Breaking the Silence: South African Representations of HIV/AIDS 9781847010704

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Ellen Grünkemeier

Breaking the Silence SOUTH AFRICAN REPRESENTATIONS OF HIV/AIDS

Breaking the Silence

Breaking the Silence South African Representations of HIV/AIDS ELLEN GRÜNKEMEIER Department of English Leibniz University of Hanover

James Currey is an imprint of Boydell & Brewer Ltd PO Box 9, Woodbridge, Suffolk IP12 3DF (GB) www.jamescurrey.com and of Boydell & Brewer Inc. 668 Mt Hope Avenue Rochester, NY 14620-2731 (US) www.boydellandbrewer.com Copyright © Ellen Grünkemeier 2013 1 2 3 4 5 17 16 15 14 13 The right of Ellen Grünkemeier to be identified as the author of this work has been asserted in accordance with sections 77 and 78 of the Copyright, Designs and Patents Act 1988 All rights reserved. Except as permitted under current legislation no part of this work may be photocopied, stored in a retrieval system, published, performed in public, adapted, broadcast, transmitted, recorded or reproduced in any form or by any means, without the prior permission of the copyright owner. Every effort has been made to trace the copyright holders of illustration 4.5 British Library Cataloguing in Publication Data A catalogue record for this book is available on request from the British Library ISBN 978-1-84701-070-4 James Currey (Cloth) The publisher has no responsibility for the continued existence or accuracy of URLs for external or third-party internet websites referred to in this book, and does not guarantee that any content on such websites is, or will remain, accurate or appropriate. Papers used by Boydell & Brewer are natural, recycled products made from wood grown in sustainable forests.

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Contents List of Illustrations Acknowledgements

1

Introduction

2

Mapping the Terrain

3 4 Ê Ê

Ê

10

T HE S OUTH AFR IC AN HIV / AID S EPID EM IC

Between Medicine & Culture Approaching the Epidemic through the Lens of Cultural, Postcolonial & Literary Studies

10 16

HIV/AIDS as a Taboo Topic

29

A C ULT URE OF SILENC E

29 32 42

/>Žˆ˜}Ê,œÕ˜`Ê̅iÊÃÃÕiÊUÊ œ˜vÀœ˜Ìˆ˜}Ê̅iÊÃÃÕiʈ˜ÊˆÌiÀ>ÀÞÊ/iÝÌÃÊU Confronting the Issue in Visual Texts

Imagery Symbols

67 67

/…iÊ,i`Ê,ˆLLœ˜ÊUÊ
`ÕÃ̈˜}Ê̅iÊ,i`Ê,ˆLLœ˜Ê̜Ê̅iÊ-œÕ̅Ê
vÀˆV>˜Ê

«ˆ`i“ˆVÊUÊœ`ˆvވ˜}Ê̅iÊ,i`Ê,ˆLLœ˜Êˆ˜Ê-œÕ̅Ê
vÀˆV>˜Ê
ÀÌÊœÀ“ÃÊUÊ The ‘H.I.V. POSITIVE’ T-Shirt of the Treatment Action Campaign

Metaphors Ê

1

S E T TING THE AG END A

Statistics Political & Social Responses Creative Responses Ê

vii viii

90

-ÕÃ>˜Ê-œ˜Ì>}½ÃÊ7œÀŽÊœ˜ÊiÌ>«…œÀÃÊUÊiÌ>«…œÀˆVÊ,i>ˆÃ>̈œ˜ÃʜvÊ HIV/AIDS in South Africa: INFECTION IS WAR UÊ
˜Ê
ÌiÀ˜>̈ÛiÊ Conceptualisation: INFECTION IS A DRAGON UÊINFECTION IS WAR: Incorporating

ՏÌÕÀ>ÞÊ-«iVˆwVÊ i“i˜ÌÃÊUÊINFECTION IS STRUGGLE

v

vi Contents

5

The Origin of HIV/AIDS

Ê Ê Ê

Welcome to Our Hillbrow: Creating and Circulating Stories about 6É
 -ÊUÊ œ“«ï˜}Ê/…iœÀˆiÃʜ˜Ê̅iÊ"Àˆ}ˆ˜ÊœvÊ6É
 -ÊUÊ

œ“ˆ˜}ÊvÀœ“Ê̅iʼ"ÕÌÈ`i½\Ê*>ViÊUÊ6É
 -Ê>ÃÊ>ʏœL>Ê *>˜`i“ˆVÊUÊ œ“ˆ˜}ÊvÀœ“Ê̅iʼ"ÕÌÈ`i½\Ê-œVˆiÌÞ

Myths

Healing HIV/AIDS Ê Ê Ê Ê Ê Ê Ê

6 Ê Ê Ê Ê Ê

114 114

134

/…iÊÀ>“iܜÀŽÃʜvÊi>ˆ˜}Ê>˜`Ê ÕÀˆ˜}ÊUÊKhabzela: Investigating >˜>Ê…>L>½ÃʈviÊ>˜`Ê i>̅ÊUÊ>˜>Ê…>L>½ÃÊ iVˆÃˆœ˜\Ê iVˆ˜ˆ˜}Ê
˜ÌˆÀiÌÀœÛˆÀ>ÃÊUÊ>˜>Ê…>L>½Ãʼ …œˆVi½\Ê
ÌiÀ˜>̈ÛiÊ,i“i`ˆiÃÊUÊ ¼
“>∘}ÊÀ>Vi½\Ê*Àœ`ÕVi`Ê>˜`Ê*Àœ“œÌi`ÊLÞʼ ÀÊÀi˜i½ÊU ¼
vÀˆV>½ÃÊ-œṎœ˜½ÊUÊ ÀÊ >À˜>À`\Ê>˜Õv>VÌÕÀˆ˜}ʼ
vÀˆV>½ÃÊ-œṎœ˜½ÊU /ˆ˜iÊ>˜`Ê iÞÊÛ>˜Ê`iÀÊ>>Ã\Ê*Àœ“œÌˆ˜}ʼ
vÀˆV>½ÃÊ-œṎœ˜½ÊUÊ /ˆ˜iÊ>˜`Ê iÞÊÛ>˜Ê`iÀÊ>>Ã\Ê
`ۜV>̈˜}Ê̅iÊ œ˜Vi«Ìʜvʼ …œˆVi½ÊUÊ Sangoma Nene’s Herbal Medication

Literary Genres

163

Life Writing

163

AIDSAFARI \Ê
`>“Êiۈ˜½ÃÊ,i«ÀiÃi˜Ì>̈œ˜ÊœvÊ6É
 -ÊUÊ /…iʘ`ˆÛˆ`Õ>ÊUÊ/…iÊ œiV̈Ûi\Ê7…ˆÌi]Ê>i]Êœ“œÃiÝÕ>Ê -œÕ̅Ê
vÀˆV>˜ÊˆÛˆ˜}Ê܈̅Ê6É
 -ÊUÊWitness to AIDS: Edwin

>“iÀœ˜½ÃÊ,i«ÀiÃi˜Ì>̈œ˜ÊœvÊ6É
 -ÊUÊ `܈˜Ê >“iÀœ˜½ÃÊ,œiÃ\Ê *ÀˆÛ>ÌiÊÛ°Ê*ÀœviÃȜ˜>ÊUÊ6ˆÃÕ>ÊˆviÊ >ÀÀ>̈ÛiÃ\Ê/…iÊ >“L>˜>˜ˆ 7œ“i˜½ÃÊ,i«ÀiÃi˜Ì>̈œ˜ÃʜvÊ6É
 -ÊUÊ/…iʘ`ˆÛˆ`Õ>ÃÊUÊ The Collective

Teenage Fiction Ê

/ii˜>}iʈV̈œ˜Êˆ˜Ê­-œÕ̅®Ê
vÀˆV>ÊUÊ1 

]ÊSara: The Empty CompoundÊUÊ>ۈ˜Ê>˜`Ê6>ÊÀÕ}iÀ]ÊA Story of Hope! For Teens and AdolescentsÊUÊ œŽÕ̅Տ>Ê>âˆLՎœ] In the Fast LaneÊUÊ Dianne Hofmeyr, Blue Train to the MoonÊUÊÕÌâÊÛ>˜Ê ˆŽ]ÊStronger than the StormÊUÊi˜˜ÞÊ,œLܘ]ÊPraise Song

7

Afterword

186

221

ME ANING S MAT T ER

Bibliography Index

224 239

$ISCLAIMER 3OMEIMAGESINTHEPRINTEDVERSIONOFTHISBOOKARENOTAVAILABLEFORINCLUSIONINTHEE"OOK 4OVIEWTHESEIMAGESPLEASEREFERTOTHEPRINTEDVERSIONOFTHISBOOK

List of Illustrations

3.1 3.2 3.3 3.4 3.5 3.6 4.1 4.2 4.3 4.4 4.5 4.6 4.7 4.8 4.9 4.10 4.11 4.12 4.13 6.1 6.2 6.3 6.4 6.5 6.6 6.7

Zapiro, The Death of Parks Mankahlana Zapiro, The Death of Peter Mokaba Sue Williamson, From the Inside: Johannes Bukhali Sue Williamson, From the Inside: Benjamin Borrageiro Sue Williamson, From the Inside: Benjamin Borrageiro’s Statement Sue Williamson, Joubert Park Project A Red Ribbon Around My House: Pinki A Red Ribbon Around My House: Title Brett Murray, AIDS Memorial in Company’s Garden in Cape Town Penny Siopis, Baby in Red Mboniseni Khanyile, Imbenge: ‘AIDS Kills’ Nombuso Nkwanyana, Imbenge: ‘HIV AIDS IS A KILLER’ Gideon Mendel, TAC March in Durban Gcina Mhlophe, Ithemba Means Hope: Body’s Defence System v. HI-Virus Fiona Khan, Hi! I am HIV Positive: HIV v. White Blood Cell Hijltje Vink, Brenda Has a Dragon in Her Blood: Brenda’s Dragon is Awake Hijltje Vink, Brenda Has a Dragon in Her Blood: Dragon v. Soldiers AIDS Mural at the Bartel Arts Trust Centre in Durban Zapiro, The New Struggle Adam Levin, AIDSAFARI Edwin Cameron, Witness to AIDS Jonathan Morgan and the Bambanani Women, Long Life. Positive HIV Stories: Body Maps UNICEF, Sara – The Empty Compound UNICEF, Sara – The Empty Compound: Opening Page Gavin and Val Kruger, A Story of Hope! Lutz van Dijk, Stronger than the Storm

49 49 60 61 64 65 70 70 72 76 83 83 89 96 99 101 101 104 107 171 177 182 191 191 198 207

vii

Acknowledgements

Many people assisted me while I was researching and writing this book. In particular, I would like to thank my colleagues and friends at the University of Hanover and the University of Dortmund for their active encouragement, astute comments and invaluable suggestions as well as for many a lively discussion – above all Jana Gohrisch, Jürgen Kramer, Ellen Risholm, Rainer Emig and Kirsten Rüther. I am also indebted to the reviewers whose insightful observations and feedback helped to improve the quality and expand the breadth of the manuscript. At James Currey, I am grateful to Jaqueline Mitchell and Lynn Taylor for seeing the book through the various stages of its production and to Frances Kennett for expert copy-editing. A special thanks goes to the artists and writers for their kind permission to reproduce cartoons, photographs and other copyright material. While every effort has been made to trace and acknowledge copyright-holders, I apologise in advance for any unintentional omission or error. My research was supported by the German Academic Exchange Service whose grant was indispensible for the success of this project – without an extended stay in South Africa this book would not have been possible. My colleagues at the University of the Western Cape as well as many other individuals in South Africa enriched my work in countless ways and have left a lasting impression on my thinking. Finally, I wish to express my deepest gratitude to Tim for his ceaseless trust in my abilities, his unwavering patience in good as well as bad times and for sharing his medical expertise with me. Likewise, I give heartfelt thanks to my parents Angelika and Herbert, to my sister Antje and brother Martin for their unconditional support.

viii

1

Introduction SETTING THE AGENDA

IF YOU don’t SPEAK OUT ABOUT HIV/AIDS, IT BECOMES A BURDEN – John, HIV Positive

In her photographic series ‘From the Inside’ (2000-2002), the artist Sue Williamson addresses the South African epidemic by engaging with people living with HIV/AIDS who are willing to disclose their status and to pose for portrait shots. She has statements they make about the virus and its effects painted on walls in public places around Cape Town and Johannesburg, which she then also documents as photographs. These are then printed side by side with the portraits. John Masuku, quoted above, is one such subject of the series.1 Both Masuku’s statement and his participation in the art project demonstrate his openness about HIV/AIDS and his commitment to public discussion. Sue Williamson and John Masuku thus unite their productive and artistic efforts to face the epidemic in a forthright and compelling manner. Williamson’s work on ‘From the Inside’ was commissioned for the Thirteenth International AIDS Conference held in Durban, South Africa in July 2000 and led to her collaboration with Masuku and other South Africans living with HIV/AIDS. Since 1985 the conference has regularly taken place in many cities around the world.2 Organised by the International AIDS Society in cooperation with United Nations agencies (UNAIDS), international non-governmental organisations and groups from the host country, this event commonly brings together more than ten thousand individuals from various backgrounds, including medical professionals and scientists, community health care workers, people living with HIV/AIDS, AIDS activists and journalists. Although, in the meantime, other AIDS conferences with more specific topics and goals have been established successfully, the World AIDS Conference is still considered a ‘key event in the AIDS 1

2

The dual image consisting of John Masuku’s portrait and the photo of his statement is included in an art catalogue published on the occasion of a solo exhibition of Williamson’s work (Williamson 2003, 9). For a more detailed discussion of the project ‘From the Inside’, see pp. 58-64. Initially taking place annually, the international conference has been held biannually since 1994, with regional conferences in alternate years. In the last few years, the conference was hosted in Yokohama (1994), Vancouver (1996), Geneva (1998), Durban (2000), Barcelona (2002), Bangkok (2004), Toronto (2006), Mexico City (2008), Vienna (2010) and Washington (2012).

1

2 Breaking the Silence

calendar’ (Schneider 2002, 160) due to its long history, large scale and interdisciplinary approach. The Durban AIDS conference both acknowledged the culture of silence that has long surrounded HIV/AIDS in South Africa and called for intervention and open discussions. The title of my study, ‘Breaking the Silence’, draws on this central focus of the conference, which certainly provides an apt premise for tackling the virus. Yet there are other ways of contextualising this phrase. In a controversial act, the Durban conference organisers declined to exhibit photographs of the HIV/AIDS epidemic taken by the Dutch photojournalist Geert van Kesteren in Zambia, arguing that they reinforce negative stereotyping and the victimisation of Africans living with HIV/AIDS by portraying only black Africans – thus not accounting for the fact that the epidemic affects all people regardless of race – and by depicting their subjects as ‘victims’ dying of AIDS rather than living with the virus (von Strauss 2004, 47). As the journalist Alexandra von Strauss (2004) shows in her contribution to the South African periodical Critical Arts, the debate is based on two conflicting readings of the theme ‘Breaking the Silence’. While van Kesteren portrays the people’s suffering to shock his audience into an awareness of the HIV/AIDS epidemic, his objectors want to create an atmosphere of hope and openness in order to overcome the stigma, taboos and myths that have prevailed. Studying and contextualising the different positions, von Strauss demonstrates in what ways representation is intertwined with questions of authority and inequality. I would take it one step further and, playing off John Masuku’s statement, point out that speaking out about HIV/AIDS not only is a response to a ‘burden’, but also becomes a ‘burden’ by triggering a number of questions that need to be addressed: How does the silence around HIV/AIDS become evident and what does it mean? Which discourses have kept silent about the epidemic, and which have addressed it? Why should the silence be broken and can it be overcome? Who has the power to break the silence and who has (not) raised a voice to speak out? What role do South African cultural products and practices play in breaking the silence and representing HIV/AIDS? The Thirteenth International AIDS Conference in Durban marks a historically significant moment in that it was the first meeting to be held in the ‘South’ (Schneider 2002, 160) and, so far, the only one hosted by an African country. The venue offered an ideal opportunity to bring into international focus the HIV/AIDS epidemic in southern Africa and to address global imbalances in the distribution of wealth and power that shape inequality in AIDS education, prevention and access to treatment. The latest statistics make apparent why sub-Saharan Africa is still a particularly appropriate centre of attention. The region has been most heavily affected by the epidemic: an estimated 22.9 million people live here with HIV/AIDS and the countries with the highest

Introduction: Setting the Agenda 3

HIV prevalence worldwide are located in this area (UNAIDS 2011, 10). ‘In 2010, about 68% of all people living with HIV resided in subSaharan Africa, a region with only 12% of the global population. SubSaharan Africa also accounted for 70% of new HIV infections in 2010’ (ibid., 7). These figures indicate the severe impact HIV/AIDS has had on sub-Saharan Africa as a whole; and yet wide variations within and between the countries are not to be disregarded. Estimated to have witnessed the highest adult infection rate in the world, South Africa has frequently been singled out for the extent and particularities of its epidemic. Exploring possible reasons for the rapid spread of the virus in this country, the historian Shula Marks locates the South African HIV/AIDS epidemic in distinct ‘high-risk situations’ such as certain forms of migrant labour, massive (forced) population movements during apartheid, anti-apartheid resistance and the resulting lack of social cohesion (Marks 2002). In the face of such historically and socio-politically distinct contexts, this study concentrates specifically on South Africa. Referring to the advent of HIV/AIDS in the 1980s, Pieter Fourie and Melissa Meyer describe apartheid South Africa as ‘a rich societal Petri dish within which HIV and AIDS could flourish’ (Fourie & Meyer 2010, 59). Employing a metaphor from bacteriological research and ‘mixing’ it with society, this phrase indeed highlights how a phenomenon like HIV/AIDS is entangled in diverse fields of knowledge and practice. Exploring the cultural manifestations of the epidemic, I investigate representations of HIV/AIDS in South African literature, cartoons, murals, photographs and films. As implied by the theme of the Durban conference, the epidemic had long been marginalised, if not ignored, and was scarcely addressed in South African literary and cultural products. This might come as a surprise since South Africa, as alluded to above, is one of the countries in the world most affected by the virus. Yet even this absence signifies as it constructs HIV/AIDS as a taboo topic. Correspondingly, fictional and other aesthetic texts do not simply ‘reflect’ or ‘mirror’ an ‘empirical reality’ but have a share in determining which issues do or do not receive attention and are thus rendered (un)speakable or (in)visible. The meanings with which HIV/AIDS has been invested are neither ‘inherent’ in the virus nor in the texts, but they are constantly produced, circulated, consumed, negotiated, challenged and appropriated. Although this study is primarily concerned with artistic depictions of HIV/AIDS, signifying practices are not exclusively at work in literature and culture but also, amongst others, in the discourses of medicine, epidemiology, virology, economics, sociology, health policy and communication. Taking into consideration the specific cultural, social, political and historical contexts, I read South African representations of HIV/AIDS as cultural constructs that are shaped by, but in turn also shape, these discourses.

4 Breaking the Silence

Discussing the varied texts as sites of complex social practices and power structures, the book will dissect the cultural politics of the South African epidemic. While it is necessary to identify a terminology to demarcate and define the field of study, it is also challenging; the act of naming – far from ‘innocent’ – invokes power hierarchies and is one of the most basic ways of producing meaning. The medical terminology concerning the Human Immunodeficiency Virus (HIV) and the Acquired Immune Deficiency Syndrome (AIDS) has become so established and familiar over the last decades that the terms seem to be ‘natural’. In order to break with this ‘naturalisation’ and accentuate that the terminology is not ‘given’ or ‘neutral’, the majuscule-spelling ‘HIV/AIDS’ is featured here, thereby highlighting that the names are acronyms from medical discourse. The terms are defamiliarised because they are not easily lexicalised nor integrated into written English; they stand out from the page, arousing the reader’s curiosity and interest. The spelling thus draws attention to the meanings that have been produced and perpetuated, both inside and outside of medical discourse, by scientists, politicians, individuals living with HIV/AIDS, the media and indeed people in general. Moreover, combining the acronyms in the phrase HIV/ AIDS implies the orthodox medical understanding that the syndrome is caused by the virus. Questions about the virology have caused major controversies in South Africa, particularly during Mbeki’s presidency, which is why it is constructive to use this spelling. Furthermore, I use the phrase ‘people living with HIV/AIDS’ to point out that people do live with the virus and need not be ‘dying’, especially in times of antiretroviral medication which does not heal HIV/AIDS but helps to delay the outbreak of AIDS and to reduce the opportunistic infections that define the syndrome. While I do not neglect that people suffer from and die of AIDS-related diseases, I want to problematise an uncritical – and sensationalist – terminology that generally refers to people living with HIV/AIDS as ‘AIDS patients’ or even as ‘AIDS victims’. Connoting helplessness and dependency, these terms unduly dramatise the situation of HIV-positive people.3 Much has been written about the diverse medical, psychological, epidemiological, demographic, sociological, economic, political, historical and cultural dimensions of HIV/AIDS; and much research has interventionist and instrumental aims such as discovering transmission routes, exploring new blood tests, vaccines and treatment options, improving antiretroviral treatment adherence, evaluating AIDS 3

Since language is a significant part of a successful response to the pandemic, UNESCO has developed Guidelines on Language and Content in HIV- and AIDS-Related Materials (2006) that problematise stigmatising words and provide alternative non-discriminatory terms. For a discussion of terminology, see also Jan Zita Grover, ‘AIDS: Keywords’ (1988). In analogy to Raymond Williams’s Keywords: A Vocabulary of Culture and Society (1976), Grover identifies and scrutinises recurrent terms used across medical, political and media discourses to discuss HIV/AIDS.

Introduction: Setting the Agenda 5

education strategies or finding explanations for the rapid spread of the virus, especially in southern Africa. This study, by comparison, is of no such immediate social relevance because it is primarily concerned with textual representations. Its key contribution is to identify, analyse and critically reflect upon the signification of HIV/AIDS. This kind of intellectual research is important, nonetheless, because the representations have a profound impact on people’s attitudes and behaviour. The close readings and critical analyses provided here can help raise awareness that the epidemic is not only a medical issue, because it is also imbued with meanings through language, literature and culture. A number of publications inform my work, either in terms of their methodological approach to analysing the signification of HIV/AIDS or in terms of their regional focus on the (South) African epidemic. Studying representations of the epidemic in western media and sciences, Cindy Patton examines the ways in which HIV/AIDS is ‘invented’ as a ‘crisis’. In keeping with the constructionist understanding of the approach that also informs my study, Patton’s book is tellingly entitled Inventing AIDS (1990). As early as 1988, Douglas Crimp edited a collection of essays AIDS: Cultural Analysis/ Cultural Activism that follows a similar argument. Outlining the contention of the volume in his introduction, Crimp states that AIDS does not exist apart from the practices that conceptualize it, represent it, and respond to it. We know AIDS only in and through those practices. This assertion does not contest the existence of viruses, antibodies, infections, or transmission routes. Least of all does it contest the reality of illness, suffering, and death. What it does contest is the notion that there is an underlying reality of AIDS, upon which are constructed the representations, or the culture, or the politics of AIDS. If we recognize that AIDS exists only in and through these constructions, then hopefully we can also recognize the imperative to know them, to analyze them, and wrest control of them. (Crimp 1988, 3)

Acknowledging the ‘existence’ of the epidemic and the ‘reality of illness, suffering, and death’, Crimp emphasises that he does not call into question the impact the virus has had on individuals. Yet, by drawing attention to the construction or, in Patton’s terminology, the ‘invention’ of the epidemic, he wants to confront the alleged ‘underlying reality of AIDS’. The editor and the other contributors respond to the epidemic as cultural practitioners. Arguing that art can have a social function, they bring together analytical and activist concerns and call for cultural practices that further critical engagement in the struggle against the epidemic, as, for example, the work of the AIDS Coalition to Unleash Power – ACT UP – does (ibid., 7). Most of the contributions are preoccupied with the North American epidemic and its ‘naturalised’

6 Breaking the Silence

association with homosexuality. Crimp self-critically comments on his volume’s ‘lacunae [...], the most important of which is attention to the cataclysmic problem of AIDS in the Third World, a problem about which one hears only a deafening silence in the dominant media in the US’ (ibid., 15). Judging from today’s perspective twenty-five years later, an isolated discussion of ‘AIDS in the third world’ runs the risk of ignoring the complexities of the global networks of the flow of capital and the political imbalances of power. Furthermore, Crimp’s description of ‘the cataclysmic problem of AIDS in the Third World’ is in itself problematic as it creates contentious meanings. Nevertheless, Crimp’s statement illustrates that HIV/AIDS has frequently been discussed in terms of its American and European contexts alone. In the introduction to her analysis of the western AIDS discourse of the 1980s and early 1990s with a special focus on Germany, Brigitte Weingart gives reasons for the exclusive focus and scope of her study. She argues that although HIV/AIDS is a global pandemic, its discursive formations are shaped by local specificities and, judging from a western point of view, ‘African AIDS’ appears to be a phenomenon in and of itself (Weingart 2002, 1617). Some scholars actually studied the ways in which ‘African AIDS’ has been produced in western media and sciences (Patton 1990, 7797; Treichler 1999, 99-126, 205-34; Watney 1990). However, although concerned with a similar issue, the analytical focus here is modified: rather than investigating western inventions of an African epidemic, the present study looks at South African representations of HIV/AIDS and thus provides an Africa-centred perspective. Research in history, political sciences, sociology, economics, health communication, media and cultural studies serves as a backdrop to my study because these scholars explore the regional impact of HIV/AIDS on (South) Africa and have done much-needed fieldwork.4 Some publications deal with the African epidemic at large and thus give a general overview; some pay particular attention to regional manifestations and characteristics; in other publications the perspectives are balanced, providing both broad outlines and specific case studies. The thematic and disciplinary variety is also evident in a range of relevant (South) African journals.5 Moreover, there are several 4

5

Some well-known scholars in the AIDS field have studied historical (Iliffe 2006, Marks 2002, Walker, Reid & Cornell 2004), economic (Kauffman & Lindauer 2004, Nattrass 2007), bioethical (van Niekerk & Kopelman 2006), social and cultural (Kauffman & Lindauer 2004, Lagerwerf, Boer & Wasserman 2009, Squire 2007, Swanepoel & Hoeken 2008, Walker, Reid & Cornell 2004) or political issues (de Waal 2006, Fourie 2006, Leclerc-Madlala 2005, Nattrass 2007, Poku & Whiteside 2004, Youde 2007; and, with a primary focus on AIDS denialism and conspiracy theories: Cullinan & Thom 2009, Fourie & Meyer 2010, Kalichman 2009, Nattrass 2012). The periodicals regularly feature original research on the epidemic (e.g. Critical Arts: SouthNorth Cultural and Media Studies, Communicatio: South African Journal of Communication Theory and Research, Communicare: Journal for Communication Sciences in Southern Africa) or are exclusively dedicated to HIV/AIDS in (South) Africa (e.g. African Journal of AIDS Research, SAHARA: Journal of Social Aspects of HIV/AIDS).

Introduction: Setting the Agenda 7

organisations, networks and programmes that conduct and/or support research on the South African epidemic.6 With its in-depth analyses of the literary and cultural dimensions of the epidemic, this book adds to the growing corpus of critical work on HIV/AIDS in South Africa. As the virus and the syndrome have been imbued with a variety of meanings in South African texts, it is my aim to identify and analyse the central signifying practices and forms of representation. Compared to general academic interest, the epidemic has not met with equal critical attention in literary and cultural studies research. HIV/AIDS has long been a taboo topic in South Africa and this lack of creative output has left its imprint on the academic field. References to fiction by scholars in other disciplines, however, make apparent the need for close readings. In AIDS and Power. Why There Is No Political Crisis – Yet, a sociological analysis of the epidemic, Alex de Waal refers to African novels on HIV/AIDS, arguing that these texts can provide insight into what discussions are sparked by the epidemic (de Waal 2006, 32-3). Briefly describing the plot of Unity Dow’s Far and Beyon’ and Phaswane Mpe’s Welcome to Our Hillbrow, de Waal sketches how the texts deal with HIV/AIDS. As his study is informed by a different disciplinary framework, he does not explore the novels as creative, complex and polyvalent texts, thus missing much of their potential. It is up to literary studies scholars to recognise and close this gap by adding their perspective to the multi-faceted analyses of the epidemic. There are some publications that explore (South) African literature on HIV/AIDS, several of which focus on Phaswane Mpe’s acclaimed novel Welcome to Our Hillbrow.7 This present study not only takes into account such prominent writers and texts, it also looks at ‘new’ literature that has not yet received widespread critical attention. Moreover, going beyond the exclusive focus on literature and considering a wide collection of creative texts, I include discussions of murals, cartoons, photos and films. The Discourse of HIV/AIDS in Africa, a collection of more than fifty short essays edited by Emevwo Biakolo, Joyce Mathangwane and Dan Odallo, covers a broad range of issues, regions, languages and approaches with varied material. Several of the contributions are concerned with the examination of literature, film, photography or art; yet, the space of the edited volume is too limited to provide detailed readings of individual texts as offered in this 6

7

Among these networks are the Social Aspects of HIV/AIDS Research Alliance (SAHARA); the Centre for AIDS Development, Research and Evaluation (CADRE); the Centre for Social Science Research (CSSR) at the University of Cape Town with its AIDS and Society research unit as well as the Centre for Communication, Media and Society (CCMS) and the Health Economics and HIV/ AIDS Research Division (HEARD) at the University of KwaZulu-Natal. They make their research accessible to interested (inter)national audiences on their websites. For example, the working papers of the CSSR are available online (http://www.cssr.uct.ac.za) and the CCMS provides access to various relevant unpublished PhD and Master’s theses (http://ccms.ukzn.ac.za). For publications on South African literature on HIV/AIDS, see Attree 2004, Attree 2010, Hawley 2004, Hlongwane 2006, Hoad 2005, Hoad 2007, Rasebotsa 2003.

8 Breaking the Silence

study.8 Examining the social and cultural dimensions of the epidemic, the local debates and practice-oriented approaches are relevant points of reference for contextualised readings of literary and visual texts. Due to two major conceptual considerations, I will not be able to explore all gaps in research on South African representations of HIV/ AIDS. Firstly, the study is limited to texts in English: just one of the eleven official languages in South Africa and spoken by only about 8.2% of the 45 million South Africans, it is clearly surpassed by isiZulu (23.8%), isiXhosa (17.6%) or Afrikaans (13.3%) (Davis 2007, 90). Although these figures seem to render South African writing in English less significant, English is a world language and has therefore been of major (economic) relevance to the publishing industry as it opens up not only national but also international book markets. Contrary to South Africa’s official language policy that promotes equality and multilingualism, the language practices in media, publishing, education and administration show a tendency towards unilingualism in English (Kamwangamalu 2003). It remains to be seen whether ‘English will continue to be the pre-eminent language of South African literary practice’ (Davis 2007, 90). While these arguments can explain the priority still given to English, the focus also implies that colonial imbalances of power are not overcome, but rather reinscribed. Consequently, this study cannot – and is not meant to – police the field. While it identifies and addresses some of the key issues and signifying practices, the need for further research will also become apparent, especially on texts about HIV/AIDS in African languages. This book explores a range of texts – cartoons, paintings and photographs – that do not prioritise any of the languages spoken in South Africa as they rely on visual signs. Secondly, despite the inclusion of various cultural products, my research was limited to selected texts that are accessible and available for close readings. Some media that have been influential for South African cultural practices such as participatory theatre, (street) theatre performances, radio and 8

Scholarship in (health) communication, media and cultural studies also comprises relevant empirical work and case studies that help to establish the field. HIV/AIDS messages in ‘edutaining’ radio and television programmes (Malan 2009, Milton 2009, Tufte 2001) or in campaigns such as loveLife (Delate 2001, Delate 2007, Lubinga et al. 2010, Lubinga & Jansen 2011, Martins 2007, Posel 2004, Thomas 2004, Tomaselli 2009) have frequently been subject to investigation. loveLife is an HIV/AIDS awareness and prevention campaign targeted primarily at South African youth. Especially its billboards have triggered controversy and critique because they often feature complicated rhetorical expressions and abstract images. Another prominent project in the HIV/ AIDS field in South Africa is DramAidE (Drama in AIDS Education). Founded by the theatre education scholar Lynn Dalrymple, this non-governmental organisation uses participatory theatre as a means of HIV/AIDS education. Affiliated with the Centre for Communication, Media and Society (CCMS) at the University of KwaZulu-Natal and working with secondary schools and universities in South Africa, the organisation develops and implements culturally specific forms of public health communication (Durden 2010, Durden & Tomaselli 2012). Influenced by this approach of participatory theatre, Louise Bourgault also explores the potential of African performance (including oral narratives, songs, dances and plays) as a means of AIDS education in her book Playing for Life. Performance in Africa in the Age of AIDS (2003), with material from Mali and South Africa in particular.

Introduction: Setting the Agenda 9

television broadcasting unfortunately cannot be included here for pragmatic and methodological reasons. All in all, I do not intend to close discussion with this book; instead, it is meant as an incentive to continue dialogue about HIV/AIDS in South Africa. Following this introduction, I go on to outline the theoretical and methodological framework of this study, locating HIV/AIDS between medicine and culture. By drawing on cultural, postcolonial and literary studies, this integrative approach is productive for a systematic investigation of the meanings with which HIV/AIDS has been imbued in South Africa. In the main body of the text each section is dedicated to one of the central signifying practices, namely silence, imagery, myths and literary genres. Although the infection spread rapidly, for various reasons the epidemic was not a priority in government politics or in literature for a considerable length of time. As shown in Chapter 3, there are by now numerous textual representations, but many of them still skirt their way around the issue rather than confront it directly, thereby constructing HIV/AIDS as a taboo topic. In Chapter 4 I analyse recurrent symbols and metaphors, examining to what extent they conceptualise the infection as a global pandemic or pay attention to the cultural and historical particularities of the South African epidemic. Some cultural constructions of HIV/AIDS have become so pervasive that they are perceived as ‘essential’. These ‘naturalised’ meanings are the subject of investigation in Chapter 5, which explores myths about the origin of the virus and about healing the infection. And finally, I turn to life writing and teenage fiction because these literary genres have been among the most significant in responding to the epidemic through cultural products.

2

Mapping the Terrain THE SOUTH AFRICAN HIV/AIDS EPIDEMIC

Between Medicine & Culture While HIV/AIDS is usually associated primarily with medicine, it is by no means limited to this field. Reaching out beyond medical concerns, HIV/AIDS cuts across discourses and involves a variety of aspects such as historical, economic, political, social, psychological, ethical and cultural issues. Highlighting the abundance of meanings, connotations and attributions generated around HIV/AIDS, Paula Treichler coined the frequently quoted phrase ‘epidemic of signification’ (Treichler 1999, 11). Bringing together the medically connoted term ‘epidemic’ with ‘signification’, which relates to issues of language and meaning, she outlines the broad context and significance HIV/AIDS has come to acquire. ‘The AIDS epidemic is cultural and linguistic as well as biological and biomedical’ (ibid., 1). Edwin Cameron argues along similar lines when he states that ‘AIDS has from the outset been as much a battle of ideas as a battle about bodies, organisms and cells’ (Cameron 2004, 7). Their statements trigger questions that help to explore the unique markers of HIV/AIDS, thus setting the ground for the discussion: Why has HIV/ AIDS not been considered solely a medical issue? What makes it stand out from other infectious diseases and thus ultimately prone to the production of meaning? And why is the epidemic likely to generate conflict, as Cameron’s use of the battle metaphor suggests? HIV/AIDS is still not fully understood by medical researchers and, although the syndrome can be medically managed with antiretroviral therapy, neither cure nor vaccine is available. A lack of detailed and clear information is of particular significance and consequence in times of modern medicine and technology. The discovery and introduction of penicillin in the first half of the twentieth century provided a revolutionary therapeutic option for curing bacterial diseases, thus making medicine seem almost omnipotent in overcoming infections.1 Despite their undeniable success, antibiotics are not to be mistaken for the ultimate cure because they are effective in treating bacterial infections 1

In 1928 the English bacteriologist Alexander Fleming discovered what he called penicillin, which was not used on patients until the 1940s because of initial difficulties with its industrial production. In 1945 Fleming received the Nobel Prize for Medicine for his scientific breakthrough.

10

Mapping the Terrain 11

only, not viral ones. In this context of medical history, the advent of HIV/AIDS in the 1980s highlights the lasting vulnerability of modern societies to infectious diseases. Held to be a ‘new’ and ‘fatal’ pandemic, HIV/AIDS provides a large-scale opportunity for the production of meanings. ‘The terror generated by AIDS, and the amount of cultural attention paid to it, requires a cultural explanation’ (Benson 2002, 153). Bringing back associations, metaphors and mythifications of cancer, syphilis, cholera or the influenza epidemic, HIV/AIDS has regularly been compared to these diseases (Marks 2002, Sontag 1990). All these medical conditions have been read as signs imbued with diverse ideas and concepts. The projection of meaning and fear onto the diseases has worked in a similar way: Susan Sontag argues that ‘societies need to have one illness which becomes identified with evil, and attaches blame to its “victims”, but it is hard to be obsessed with more than one’ (Sontag 1990, 104). For this reason, cancer, which has long been the most feared disease, is no longer the centre of attention (ibid.), but has been replaced by HIV/AIDS, comparable to and yet unlike any other illness because of its distinct configuration and collection of characteristics. Unlike syphilis, cholera or cancer, AIDS is not an illness but a syndrome, as the name ‘Acquired Immune Deficiency Syndrome’ suggests. Not just a terminological specification, this distinction is significant because it has various consequences for the diagnosis of and response to the pandemic. AIDS is an immune system disorder characterised by a broad spectrum of possible illnesses ‘that an intact immune system can usually manage but which take advantage of the “opportunity” provided by weakened immunity to proliferate in the body’ (McGovern & Smith 2001, 34). Thus ‘the very definition of AIDS requires the presence of other illnesses, of so-called opportunistic infections’ (Sontag 1990, 104). AIDS is therefore the product of a formal definition: the diagnosis is based on blood test findings and on AIDS-defining illnesses such as pneumonia (pneumocystis carinii), a rare cancer called Kaposi’s sarcoma, encephalitis, lymphoma and oesophageal thrush or other fungal infections (McGovern & Smith 2001, 32-3). With a long list of possible illnesses comprising more than twenty indicators, the definition of AIDS is complex and controversial (ibid.) and the ongoing review process reveals the construction and variability of the syndrome. While medical sciences appeal to standards of objectivity and are commonly held to be reliable, the discussion about the diagnostics of AIDS challenges this understanding. ‘That AIDS is not a single illness but a syndrome, consisting of a seemingly open-ended list of contributing or “presenting” illness which constitute (that is, qualify the patient as having) the disease, makes it more a product of definition or construction’ (Sontag 1990, 116). The syndrome is thus not ‘given’, ‘fixed’ or ‘universal’; it is identified on the basis of a variable catalogue of illnesses and symptoms.

12 Breaking the Silence

AIDS was first reported in the United States in 1981 when medical doctors took notice of an immune suppression in young homosexual men for which they could not find an explanation. In the early 1980s, before the standardised name Acquired Immune Deficiency Syndrome was introduced, several terms were used. The act of naming underscores the compulsive desire to define and thereby ‘come to terms’ with the issue. Most of the attributes relate to the supposed exclusive prevalence of the syndrome among homosexual men: GRID (gay-related immune deficiency), ‘gay lymph node syndrome, gay cancer, gay plague, homosexual syndrome, community-acquired immunodeficiency (CAID), and acquired community immunodeficiency syndrome (ACIDS)’ (Scarce 2001, 299). Although some of the names are not unlike today’s established terminology, they still ‘forged an early social and cultural link between homosexuality and AIDS’ (ibid.). The classification creates additional layers of meaning and politicises the epidemic since homosexuals are identified as members of a supposed ‘risk group’. This concept has been ‘used to stereotype and stigmatize people already seen as outside the moral and economic parameters of “the general population”’ (Grover 1988, 27), thereby isolating and blaming homosexuals as well as prostitutes, drug users and other marginalised social groups. From the outset, gay and AIDS activists in the United States have called attention to and criticised the construction of difference and hierarchy inscribed in the terms. Although the official phrase Acquired Immune Deficiency Syndrome does not directly name homosexuals as a ‘risk group’, the perception of the pandemic has, nevertheless, strongly been shaped by the fact that the syndrome was first identified in homosexuals in the United States (de Waal 2005, 222). The reports of an ‘inexplicable’ and thus particularly threatening immune suppression immediately brought scientists onto the scene. ‘Rarely in medical history has there been such an accelerated scientific search for the cause of a syndrome’ (ibid., 221). As a result of extensive and parallel research, scientists from US-American and European institutes soon identified the virus that causes the syndrome, ultimately named the Human Immunodeficiency Virus (HIV).2 Despite these early successes, ‘scientific progress was marred by acrimonious competition over credit for the discovery. [...] The clash of egos and institutional interests slowed progress in developing a test [...] and further research into possible treatment’ (ibid.). Although the pathogenesis of HIV/ AIDS still cannot be fully explained, the virus in itself can be described accurately.

2

The scientists Dr Robert Gallo at the National Cancer Institute in the USA, Dr Jan Levy at the University of California and Dr Luc Montagnier at the Pasteur Institute in Paris identified the virus simultaneously, leading to various names for the virus until it officially came to be called HIV in 1987 (de Waal 2005, 221).

Mapping the Terrain 13 HIV is a particular type of virus, a retrovirus, and more specifically, a lentivirus, a particular type of retrovirus. Many viruses cause acute infections that are cleared by the immune system, leaving lifelong immunity as the only reminder that the infection ever occurred. Lentiviruses, however, are never completely eliminated from the body. Primate lentiviruses, including HIV, are additionally able to infect CD4+ cells, a component of the immune system. The loss of CD4+ cells is largely what devastates the immune system in individuals with AIDS. (Kestler, Medley & Horn 2001, 327)

Not only does this complex virology set HIV/AIDS apart from other infections, it also has consequences for the prevention and medical treatment as well as for the social perception of HIV/AIDS. Stressing the unique features of the virus and the ways in which it has been conceptualised, Shula Marks states that, compared to other infectious diseases like syphilis, HIV has gone one better by attacking and destroying the immune system which is itself supposed to fend off disease. Moreover, by becoming part of the genetic material of the person it infects, it has what has been termed the ‘ultimate camouflage’. People who carry the virus have few if any obvious signs of infection, and many may well be unaware of their infection, but can still pass it on to others. Meanwhile the virus itself constantly changes, thus evading the armoury of the most sophisticated of modern drugs. All this makes it the ideal killer. (Marks 2002, 16)

This description serves well to single out HIV and to highlight its impact on the body’s immune system. Nevertheless, Marks exaggerates the virus’s scope. The personification and the use of war metaphors suggest that the destruction of the immune system is the ultimate objective of the virus, whereas, as pointed out by Kestler, Medley and Horn, ‘HIV’s sole activity is the production of new copies of itself. The fact that this replication can cause disease in the virus’s host organism is an unintended side effect. In fact, HIV’s activity is not intended to kill its host, but rather to continue finding new cells to permit replication’ (Kestler, Medley & Horn 2001, 327). Here it becomes apparent how academic texts concerned with the analysis of HIV/AIDS can also construct the virus through language and imbue it with meaning. As the virus is transmitted through body fluids, with sexual intercourse as the most likely way of infection, HIV/AIDS is not only a global phenomenon but ‘also the most personal’ (Marks 2002, 16) and thus gives rise to certain associations. ‘Like other sexually-transmitted infections, AIDS is surrounded by stigma, including shame, secretiveness and denial’ (de Waal 2005, 221); and, ‘precisely because the virus is transmitted sexually, it makes government and indeed public health intervention particularly fraught’ (Marks 2002, 16). HIV/ AIDS is therefore not limited to medical matters and cannot be viewed in isolation. The epidemic is a multi-faceted phenomenon that is

14 Breaking the Silence

interrelated with broader social issues and taboos. Nourishing secrecy and concealment, the ‘epidemic is distinctive in that it is unseen’ (Walker, Reid & Cornell 2004, 20). HIV has a long incubation or latency period: on average, people experience a time-lag of ten years between the HIV infection and the appearance of AIDS-defining symptoms, even without antiretroviral treatment which would further delay the syndrome (Fätkenheuer, Salzberger & Diehl 2004, 843). For years the virus remains ‘invisible’ and thus ‘abstract’, enabling individuals, society and government to pay little attention to the spread of the epidemic. Statistics make apparent the delayed ‘visibility’ of the HIV/ AIDS epidemic in South Africa. While HIV prevalence was less than 1% in South Africa in 1990, it increased rapidly over the following years to about 12% in 2000 (Dorrington et al. 2001, 21). Analysing and discussing the findings of successive ‘Afrobarometer’ surveys3, Alex de Waal speaks of a ‘missing link. People overwhelmingly acknowledge that there is an AIDS epidemic, but do not take the next step of accepting the consequences’ (de Waal 2006, 13). While public concern about the epidemic has grown among South Africans, the polls indicate that HIV/ AIDS does not head the list of priorities, ranking below unemployment, crime and poverty. This observation is the starting point for de Waal’s investigation in which he argues that ‘if African voters are not concerned with HIV/AIDS, it follows that the politicians they vote into office will not be impelled to make AIDS a priority’ (ibid., 8). The long dormancy of a relatively asymptomatic HIV infection highlights the complexity of such a viral infection’s presence in that it cannot be accounted for with a simple ‘healthy v. ill’ dichotomy. It is inappropriate and imprecise to consider people who carry the virus as ‘healthy’ because this classification neglects their need of access to counselling, to health care facilities and to treatment. At the same time, however, it is too simplistic to classify them as ‘people with AIDS’, as ‘patients’, as ‘suffering’, as ‘ill’ or even as ‘dying’. Although HIV/AIDS cannot be cured, antiretroviral medication (Manos, Negron & Horn 2001, 51-3) helps to increase the number of CD4+ cells and to decrease the viral load, thus halting the advent of the syndrome; moreover, it reduces the frequency and severity of AIDS-defining illnesses. In order to minimise the replication of the virus and to reduce the risk of drug resistance, different drugs, commonly referred to as highly active antiretroviral therapy (HAART), are usually taken in combination (a ‘cocktail’) rather than as a monotherapy. Since the 1990s, the biomedical standardised care of HIV/AIDS comprises life-long antiretroviral therapy and additional pharmaceutical drugs to treat opportunistic diseases. Despite its obvious benefits, there are major drawbacks to 3

First conducted in 1999 by scholars of the University of Cape Town, the ‘Afrobarometer’ surveys systematically ‘measure’ public opinion in many African countries on a wide range of issues (de Waal 2006, 7).

Mapping the Terrain 15

antiretrovirals, especially their side effects and interactions with other drugs. To make the drugs most effective, people have to adhere to a strict regimen and schedule their eating habits accordingly, which is why the therapy disrupts their social and professional lives. Under the right economic conditions, this treatment strategy can and has turned the syndrome into a medically manageable chronic condition such as diabetes or hypertension, which is why I prefer to speak of ‘people living with HIV/AIDS’. There are certainly major differences between HIV and AIDS because ‘the syndrome AIDS cannot itself be contracted, nor can the opportunistic infections that constitute the syndrome be readily communicated to those with healthy immune systems. What can be contracted is the Human Immunodeficiency Virus’ (Grover 1988, 19). By using the combined phrase ‘HIV/AIDS’, I do not intend to present the terms as synonyms but to highlight both the connections and the differences between the infection and the syndrome. When relevant I differentiate between the virus and the syndrome in order to indicate, for example, whether someone tests HIV-positive or is diagnosed with AIDS. In order to avoid generalisations, I work with two terms from the medical discourse, epidemic and pandemic, which scientists use to differentiate between two main forms of contagious diseases affecting a large number of people; and this distinction can also be applied to other fields of research such as literary and cultural studies. An infectious disease which occurs in a limited period of time and in a specific place is called an epidemic, whereas the term pandemic refers to an infection which is limited in time but not in place (Gaus et al. 1999, 621, 628). In using the term epidemic, the focus is on characteristics of the infection that arise locally and have an impact on the region’s culture, society, economy and politics. In the examination of a pandemic, however, the centre of attention shifts: scientists try to find general concepts which can explain major similarities and differences between the regions affected by the infection, even if they run the risk of losing local sensitivity and oversimplifying the situation. Both terms, epidemic and pandemic, refer to infectious diseases of a limited time span. When AIDS was first described, researchers used these terms because they assumed that HIV/AIDS might soon be overcome or even eradicated. However, the end is still not in sight and therefore some researchers prefer to speak of AIDS as an endemic (see, for example, de Waal 2006, 6), defined as an infectious disease occurring in a particular place over an unlimited period of time, as in the case of malaria (Gaus et al. 1999, 621). The question about the future of HIV/AIDS cannot yet be answered; therefore, I do not include endemic as a category of analysis and work instead with the more common terms epidemic and pandemic because they allow for a differentiation in geographic focus.

16 Breaking the Silence

Approaching the Epidemic through the Lens of Cultural, Postcolonial and Literary Studies The general theoretical and critical framework of this book is set by the ‘common ground’ of cultural and postcolonial studies, to cite the title of a collection of articles in which their interrelations are explored (Klein & Kramer 2001). Questions of power and resistance, of dominance and subordination, of inclusion and exclusion are relevant to both approaches and form major routes into the analysis of South African representations of HIV/AIDS. Arguing that the aesthetic qualities of a text also signify, a literary studies approach expands the analytical framework of this study. Cultural Studies As an interdisciplinary field, cultural studies embraces disciplines such as media studies, sociology, politics, history and anthropology, all of which have constantly shaped and redefined the approach. Its overall subject is the critical engagement with culture as a site of power relations, defined by Stuart Hall in the following terms: What has come to be called the ‘cultural turn’ in the social and human sciences [...] has tended to emphasize the importance of meaning to the definition of culture. Culture, it is argued, is not so much a set of things – novels and paintings or TV programmes and comics – as a process, a set of practices. Primarily, culture is concerned with the production and the exchange of meanings [...] between the members of a society or group. (Hall 1997a, 2)

Based on this understanding of culture, cultural studies is not so much characterised by its objects but can best be understood as a perspective or analytical focus through which cultural processes and social relations are studied. Outlining the specificities of the field, Lawrence Grossberg criticises that ‘cultural studies is too often being used merely as an excuse for disciplines to take on new, usually popular, cultural objects’ (Grossberg 1997, 246). By defining cultural studies mainly on the basis of its objects, one falls short of recognising the key concerns and contributions of cultural studies, namely the politically engaged investigation of culture. Cultural processes and phenomena are invested in politics and power structures and cultural studies aims to uncover these political dimensions of apparently apolitical cultural issues. In an interview Stuart Hall describes the political edge as the defining marker of such analyses when he states that ‘the question of the politics of culture or the culture of politics [...] is at the centre of cultural studies’ (Hall in Chen 1996, 396). Reflecting on hierarchies

Mapping the Terrain 17

and on principles of inclusion and exclusion, scholars can pay and call ‘attention to all those voices, positions, experiences which have been ruled out of any dominant intellectual and political formation’ (ibid.). In fact, unequal power relations become evident within cultural studies itself. The field has often been dominated by and limited to European and North American perspectives, whereas cultural studies work from other regions around the world has been relegated to the margins. With his seminal article ‘Dare We De-Centre Birmingham? Troubling the “Origin” and the Trajectories of Cultural Studies’, Handel Kashope Wright (1998) goes against the Eurocentric dichotomy of ‘centre’ and ‘periphery’, triggering a debate about the histories and forms of cultural studies (e.g., McNeil 1998, Tomaselli 1998). Presenting alternative locations such as the Kamiriithu Community Education and Cultural Centre in Kenya, he challenges the common assumption that cultural studies has its roots exclusively in the Centre for Contemporary Cultural Studies (CCCS) in Birmingham. Arguing that cultural studies developed differently in different parts of the world, he considers the CCCS to be just one of the field’s several origins. Endorsing this polycentric conception, Keyan Tomaselli and Handel Kashope Wright edited an issue of Cultural Studies dedicated to African cultural studies – later published as a book entitled Africa, Cultural Studies and Difference (2011) – which ‘contributes to the mapping and development of a plurality of African cultural studies and to making space for African approaches in the evolving international discourse of cultural studies’ (Tomaselli & Wright 2008, 173). They draw attention to the rich and substantial corpus of politically interventionist African cultural studies ‘being developed primarily by Africans on the continent as well as African émigrés in the diaspora’ (ibid.), and ‘only occasionally noted by dominant Western cultural studies [...], which seems largely oblivious of developments on, in and from the African continent’ (ibid., 181). Highlighting the geopolitics of producing and circulating knowledge, Tomaselli criticises that ‘battles [about the ownership and voice of cultural studies] are fought out at conferences and in publications, usually in the First World metropoles of academic production’ (Tomaselli 1999, 4).4 It is therefore one of the overall aims of African cultural studies to counter the marginalisation of African scholarship in the dominant articulations of cultural studies. 4

There are a number of ‘alternative’ publications concerned with African cultural studies. Similar to centres, conferences, research and study programmes, publications can serve as an indicator of ongoing research and practice in the field. Tomaselli and Wright briefly describe the scope of various journals, including Africa Media Review, Critical Arts and Journal of Cultural Studies (Tomaselli & Wright 2008, 179-80). Although not directly concerned with African cultural studies, Shome also refers to journals that regularly provide space for cultural studies work from different parts of the world (Shome 2009, 706).

18 Breaking the Silence

This focus on decolonising the field augments ongoing debates about globalising cultural studies. In attempting to deconstruct the narrative of (British) ‘origins’ and move beyond North Atlantic centered logics for studying culture, various cultural studies scholars have positioned, framed, or articulated cultural studies through a logic of the ‘international’ that has emphasized the importance of recognizing cultural studies work in diverse global, and especially nonwestern, contexts. (Shome 2009, 694)

However, the politics of ‘internationalising’ cultural studies can be problematic as well because ‘the vantage point from which the “internationalizing” rupture seems to occur, and the point of departure into the international, for the most part, continues to be the West’ (ibid., 700). Addressing the relation between its regional and international variants, Keyan Tomaselli and Handel Kashope Wright state: as Africans we can only be at home in international/ transnational cultural studies when we can say ‘African cultural studies’ without non-Africans raising an eyebrow and us feeling like biting our tongue. Better yet, we can only be at home in cultural studies when non-Africans engage African cultural studies without us raising an eyebrow and wishing they would bite their tongue. (Tomaselli & Wright 2008, 184)

In their investigation of power relations, many scholars have emphasised the political potential of cultural studies. In his recently published Cultural Studies (2008), the sociologist Oliver Marchart coins a neologism and introduces the phrase of a ‘political turn’ because the political dimension is not adequately accounted for in the term ‘cultural turn’ (Marchart 2008, 26).5 Accentuating this characteristic of cultural studies, Grossberg argues along similar lines. ‘Certainly cultural studies is, in the first instance, concerned with cultural practices, but only in the first instance, as its entrance into the context of the unequal relations of force and power’ (Grossberg 1997, 248). These inequalities can be made visible in analyses of central themes 5

Marchart gives three major reasons for the political edge of British cultural studies (Marchart 2008, 23). Firstly, the working-class background of the key thinkers Richard Hoggart and Raymond Williams has left its imprint on the cultural studies project. Democratising a previously elitist understanding of culture, they focus on the variety of British cultures, including everyday and working-class cultures. Secondly, historically and politically speaking, cultural studies has been closely associated with the New Left and with theoretical approaches that are strongly informed by Marxist ideas. Thirdly, due to its institutional position and particular concern for adult education, cultural studies has never been an exclusively academic field but has always been engaged with socio-political contexts. Wright also addresses the location of the CCCS in the university but considers it a ‘double-edged sword’ (Wright 1998, 35). While the affiliation with the university allows for a political intervention in the academy, it also implies that cultural studies scholars approach popular culture through an academic angle. The Kenyan Kamiriithu Centre, by comparison, is situated in the general community so that it is more immediately involved with local politics and culture.

Mapping the Terrain 19

like identity and difference. Referring to the common analytical categories of ‘race, class, gender, etcetera’, Marchart speaks of the ‘mantra’ of cultural studies (Marchart 2008, 169). As the ‘etcetera’ suggests (ibid., 209-18), the list of social markers is open-ended and can be extended to include further categories such as issues of body, sexuality, nutrition and health which are of particular interest to my study. In a cultural studies analysis these apparently private issues are stripped of their supposed ‘innocence’ and discussed as sites of power relations and inequality. Commenting on the history of cultural studies at the CCCS in Birmingham, Hall stresses that ‘[a]gain and again, the so-called unfolding of cultural studies was interrupted by a break, by real ruptures, by exterior forces; the interruption, as it were, of new ideas, which decentred what looked like the accumulating practice of the work’ (Hall 1999, 103). In its early stages, British cultural studies used to be particularly concerned with aspects of class. This exclusive focus was soon modified to include new concerns; above all, issues of feminism and racism proved productive paradigmatic shifts. In addition to ‘break’ and ‘interruption’, Stuart Hall uses further metaphors to stress the challenges of theoretical work: he speaks of ‘struggle, of wrestling with the angels’ (ibid., 101), of the ‘conundrums of theory’ (ibid., 102), of ‘an extremely difficult road’ (ibid., 103). These metaphors illustrate that the incorporation of further analytical categories into the cultural studies perspective has not been smooth but contested and hotly debated (ibid., 103-5). Unlike Hall, Keyan Tomaselli reads ‘struggle’ in the context of African cultural studies literally rather than metaphorically. Cultural studies in struggle – and I mean the kind of struggle where bullets fly, people get killed, detained, tortured and exiled – cannot be easily the same inflection of cultural studies as a philosophical topic of discussion restricted to the academy – no matter how politicized its authors might claim their practices to be. (Tomaselli 1998, 392)

As this quote makes evident, Tomaselli’s interpretation of the political agenda of cultural studies work is strongly interrelated with (the legacies of) South Africa’s distinct history. To him, African cultural studies is not an intellectual endeavour but a practice aimed at democratic empowerment. Having contributed, in whatever small way to the toppling of the apartheid edifice, the southern African variants of cultural studies, amongst many African instances, largely developed theories in situ. Contingent approaches rearticulated a kind of culturalist Marxism into not only analysis of local contexts, but also into strategies for political action. (ibid., 390)

Tomaselli defines African cultural studies in terms of activist involvement, thereby taking it one step further than the British approach.

20 Breaking the Silence

Comparing the CCCS with the Kenyan Kamiriithu Centre, Wright also addresses intellectual study and praxis as one of the central differences between these articulations of cultural studies. ‘While the Birmingham Centre represented an origin of cultural studies as a named field of academic study, Kamiriithu represented an origin of cultural studies as a community-based, production-oriented, popular-education form of study’ (Wright 1998, 34). With regard to British cultural studies, Stuart Hall also acknowledges the methodological challenges of developing an analytical approach that combines theory and politics. Although critical engagement with texts marks a central aspect of cultural studies, he cautions, ‘cultural studies will always work through its textualities – and at the same time textuality is never enough’ (Hall 1999, 106). In its western research tradition, cultural studies is a political project concerned with power relations, without, however, advocating immediately utilitarian or activist interventions and without intending to ‘leave the realm of intellection and carry its practice to the streets’ (Grossberg 1997, 263). To exemplify his argument about the distinctive but difficult political dimension of the field, Hall draws on the HIV/AIDS pandemic and provocatively asks what cultural studies can contribute to urgent social, political or medical issues.6 As Hall’s argument corresponds exceptionally well to both the subject matter and the methodology of this study, which can best be characterised as a British cultural studies approach centred on South Africa, I quote the relevant passage almost in its entirety: AIDS is one of the questions which urgently brings before us our marginality as critical intellectuals in making effects in the world. And yet it has often been represented for us in contradictory ways. Against the urgency of people dying in the streets, what in God’s name is the point of cultural studies? What is the point of the study of representations, if there is no response to the question of what you say to someone who wants to know if they should take a drug and if that means they’ll die two days later or a few months earlier? At that point, I think anybody who is into cultural studies seriously as an intellectual practice, must feel, on their pulse, its ephemerality, its insubstantiality, how little it registers, how little we’ve been able to change anything or get anybody to do anything. [...] On the other hand, in the end, I don’t agree with the way in which the dilemma is often posed for us, for it is indeed a more complex and displaced question than just people dying out there. The question of AIDS is an extremely important terrain of struggle and contestation. In addition to the people we know who are dying, or have died, or will, there are many people dying who are never spoken of. How could we say that a question of AIDS is not also a question of who gets represented and who does not? [...] Unless we operate in this tension, we don’t know what cultural studies can do, can’t, can never do; but also, what 6

See also Paula Treichler (1999), How to Have Theory in an Epidemic.

Mapping the Terrain 21 it has to do, what it alone has a privileged capacity to do. It has to analyse certain things about the constitutive and political nature of representation itself, about its complexities, about the effects of language, about textuality as a site of life and death. Those are the things cultural studies can address. (Hall 1999, 106-7)

Bearing in mind the different articulations of African and British cultural studies, this study attends to the tension between intellectual and political concerns in that it explores the particularities, and especially the social dimensions, of the South African representations of HIV/AIDS. Representation is a key practice in the production of meaning, defined by Stuart Hall in very general terms as ‘using language to say something meaningful about, or to represent, the world meaningfully, to other people’ (Hall 1997b, 15). Language is understood here in a broad and inclusive way, referring to written and spoken words, to visual images and to objects in general, all of which can function as signs (ibid., 18). On the basis of this broad understanding of language, cultural studies is concerned with interdisciplinary analyses of texts in a wide sense, including varied cultural products that construct meaning. Stuart Hall stresses the efforts and decisions involved in the signification process when he states that ‘representation is a very different notion from that of reflection. It implies the active work of selecting and presenting, of structuring and shaping: not merely the transmitting of already existing meaning, but the more active labour of making things mean’ (Hall 1982, 64). Since the so-called ‘cultural turn’ in the humanities and social sciences, meaning has not been thought to be ‘given’ or ‘pre-existing’, to be inherent in the ‘things’, the ‘world’ or in texts; instead, it is ‘constructed, produced. It is the result of a signifying practice – a practice that produces meaning’ (Hall 1997b, 24). Meaning is ‘not straightforward or transparent’ but ‘changing and shifting with context, usage and historical circumstances. [...] It is always being negotiated and inflected, to resonate with new situations’ (Hall 1997a, 10). Consequently, meaning is never finally or universally ‘fixed’; it needs to be ‘read’ and therefore involves a continuous dialogic and analytical process of production and reception. The interdependency of meaning and contexts also implies that meaning is produced differently in different cultures and at different historical moments. A cultural studies approach is, as Grossberg writes in his definition, ‘radically contextualist’ (Grossberg 1997, 254). An event or practice (even a text) does not exist apart from the forces of the context that constitute it as what it is. Obviously, context is not merely background but the very conditions of possibility of something. It cannot be relegated to a series of footnotes or to an afterthought, to the first or

22 Breaking the Silence last chapter. It is precisely what one is trying to analyze and it is the most difficult thing to construct. (ibid., 255)

The context is not, as Grossberg goes on, ‘empirically given beforehand; it has to be defined by the project’ (ibid.). Moreover, the practice of representation is not ‘neutral’ or ‘egalitarian’ but inscribed in power relations, which is why meaning is ‘often contested, and sometimes bitterly fought over’ (Hall 1997a, 10). As Tomaselli’s literal reading of Hall’s struggle metaphor has shown, these issues have been all the more pertinent to (South) Africa. Although British cultural studies does not emphasise political work and praxis in the way the African approach does, it does not consider signification a mere intellectual game, either. Signification processes have considerable social consequences because ‘cultural meanings are not only “in the head”. They organize and regulate social practices, influence our conduct and consequently have real, practical effects’ (ibid., 3). Meaning can be assigned so firmly to people, events, objects or ideas that it comes to be seen as ‘natural’ or ‘true’ and is therefore readily accepted without further examination. Like cultural studies, postcolonial studies calls for an interdisciplinary and contextualising approach that serves to read texts as sites of power relations. Postcolonial Studies Characterised by the ‘attempt to make the field of knowledge more representative’ (Gandhi 1998, 52), postcolonial studies recognises perspectives that have long been eclipsed from dominant fields of knowledge; hitherto marginalised or omitted voices have come to be explored and included. Confronting the established colonial power structures, postcolonial studies challenges western domination and demands egalitarian access to the production, circulation and negotiation of meaning and knowledge. Concerned with areas such as history, politics, culture and literature, the approach of postcolonial studies explores and challenges dominant views of the relations between (ex-)coloniser and (ex-)colonised and raises questions about the impact colonial and imperial rule has had on the (former) colonies of the European empires and vice versa. The colonial history of the territory now known as South Africa began in 1652 with European conquest and settlement.7 Under Jan van Riebeeck, a group of Dutch settlers established the first white 7

Marx (2004) combines overviews with case studies in order to explore the heterogeneous history of the African continent between 1800 and the present. Ross (1999) focuses exclusively on South Africa and gives concise insight into ‘how South Africa became a single, though not uniform, country’ (Ross 1999, 1). Yet more specifically, Beinart (2001) addresses South African history of the twentieth century and Bickford-Smith, van Heyningen & Worden (1998) investigate the history of Cape Town. In his article informed by literary studies, Davis (2007) is primarily concerned with English writing in South Africa. Yet, like several other literary studies scholars, he locates his discussion of literature in historical and political contexts.

Mapping the Terrain 23

settlement at Table Bay where they built a fort and cultivated vegetables in order to provide fresh food for the India-bound trading vessels of the Dutch East India Company. They encountered groups of indigenous peoples, San hunter-gatherers, Khoi pastoralists and Bantu-speaking peoples, who had inhabited the Cape Peninsula long before the first European settlers arrived.8 Because of its diverse peoples, cultures, languages, religions and beliefs, South Africa has an extensive history as a cultural crossroads – but also an extensive history of racism. For a long period of time the vast majority of South Africans were excluded from participating in political, social and cultural issues. With increased vigour since the 1920s, colonial powers introduced policies of racial segregation and discrimination, whereby they could control the African majority and secure their own political, economic, legislative and administrative privileges. This practice of racial discrimination could be witnessed not only in South Africa, but across the whole continent. Not until 1948, when the Afrikaner Nationalist Party came to power after its victory in the ‘national election’, did South Africa begin to stand out for its drastically rigidified racial divisions. It introduced a state policy of separateness, or ‘apartheid’ as it is called in Afrikaans, which was designed to separate South Africans in virtually all spheres of social life on the basis of race classifications. Laws passed to implement this government policy were, among others, the Population Registration Act (1950), which classified citizens by race as white, Coloured,9 Asian or black; the Group Areas Act (1950), an attempt to physically separate these racial groups; and the Bantu Education Act (1953), introducing an unequal educational system that bred conflict and later led to the student protests in Soweto in 1976. The Soweto uprising was a watershed event in the liberation struggle for years to come because the Afrikaner government was not able to regain control of society. Today, racism is no longer the basis of South Africa’s state policy as white minority rule was abolished when the ban on the African National Congress (ANC) was lifted in 1990 and the first democratic elections were held in 1994. Generally speaking, the period of decolonisation has frequently been accompanied by ‘postcolonial amnesia’ (Gandhi 1998, 4), a desire to erase the colonial past of subordination and to make a completely new start as an independent nation state. However, colonialism and its 8

9

According to apartheid historiography, Europeans arrived at the Cape at about the same time as African peoples came in from the North. This argument was constructed to justify the claim to the territory by the Europeans. It was debunked, however, when archaeological findings dating from the third century indicated that Africans had long occupied the area prior to European arrival (Davis 2007, 87). In the South African context, the term ‘Coloured’ refers to South Africans of mixed race who descend from slaves brought in from eastern and central Africa, from the indigenous Khoi and San, or from indigenous Africans and whites. The term is still widely used even though it is contentious because of underlying racial ideologies.

24 Breaking the Silence

aftermath cannot simply be set apart and considered in isolation. After official independence, formerly colonised countries are still shaped by the legacies of colonialism, apparent, for example, in prevailing social and economic inequalities. In the case of South Africa, it was the end of the apartheid regime that brought about high hopes for the future as made evident in phrases like ‘New South Africa’ and ‘Rainbow Nation’. Yet despite the euphoria about the political transition, South Africa continues to display the effects of the ideology and implementation of ‘white supremacy’. During apartheid, ‘the structural problems of the country’s society and economy had been masked by its political conflicts. The change of government brought them out into the open’ (Ross 1999, 198). Differences in education, in the levels of unemployment, in professions and incomes, in housing and living conditions, in the accessibility of medical care are but some markers of omnipresent social inequalities in contemporary South Africa. As evident in this brief sketch, South African history has been shaped by complex race and power relations that have gained in prominence and notoriety, especially during apartheid; and these contexts are also significant when analysing representations of HIV/AIDS. Postcolonial studies is an attempt to explore and confront such colonial legacies as evident in South Africa; it is a ‘disciplinary project devoted to the academic task of revisiting, remembering and, crucially, interrogating the colonial past’ (Gandhi 1998, 4). Postcolonialism is therefore understood to be a continuous process rather than simply a reference to the historical period of ‘after colonialism’. Anne McClintock, however, finds the term postcolonial problematic and emphasises that ‘the historical rupture suggested by the prefix “post” belies both the continuities and discontinuities of power’ (McClintock 1995, 12). She goes on to identify another problematic aspect of the term postcolonialism, namely its tendency to overgeneralise and to neglect differences between cultures. ‘Can most of the world’s countries be said, in any meaningful or theoretically rigorous sense, to share a single common past, or a single common condition, called the postcolonial condition, or postcoloniality?’ (ibid., 12). The attribute ‘“postcolonial” may too readily license a panoptic tendency to view the globe through generic abstractions void of political nuance’ (ibid., 11). Simon Featherstone takes up McClintock’s critique of ‘telescoping crucial geo-political distinctions into invisibility’ (ibid., 11) as this homogenisation neglects the diverse geographical, socio-political and cultural circumstances of postcolonialism (Featherstone 2005, 6). Rather than subscribing to a canon of theorists, critical concepts and core topics that have come to dominate postcolonial studies, Featherstone reflects upon the ‘nervous conditions of postcolonial studies’, as the introductory chapter of his book Postcolonial Cultures

Mapping the Terrain 25

(2005) is titled. ‘Any discipline works as much through its exclusions as its inclusions, and postcolonial studies’ relative inattention to popular culture [...] needs some consideration. It is a neglect that is, in many ways, surprising, given postcolonialism’s stated interest in reconfiguring dominant cultures’ (ibid., 8). In keeping with this critique, Featherstone breaks with the elitist focus on ‘high culture’ and tackles popular fields such as music, cinema, dance and sports instead. As evident in the emerging field of postcolonial cultural studies, recent work has gone beyond the predominantly literary focus and explored the interdisciplinary dimensions of postcolonialism. Still, literature has played a pivotal role in postcolonial studies. ‘Texts, more than any other social and political product, [...] are the most significant instigators and purveyors of colonial power and its double, postcolonial resistance’ (Gandhi 1998, 142). Ania Loomba also puts emphasis on the specific functions of literature because ‘literary texts, being complex clusters of languages and signs, can be identified as extremely fecund sites for [...] ideological interactions’ (Loomba 2005, 63). Discussing the intersections between text and context, she goes on to stress, however, that literature does not simply work as a ‘mirror’ but ‘absorbs, appropriates and inscribes aspects of the “other” culture, creating new genres, ideas and identities of the process’ (ibid.). Literature is thus a means to critically scrutinise and challenge dominant perspectives and ideas; and postcolonial studies can be understood as the inclusion and exploration of marginalised perspectives as well as a critical engagement with literature, as a way of analysing the production of meaning and the construction of (self-)representation (Döring 2008, 1314, 183-7). Given the interactions between literature and postcolonialism, it is not surprising that many scholars in this field are trained in or affiliated with literary studies (Loomba 2005, 63). Still, to situate postcolonial studies exclusively in literary studies has consequences in that this location limits the thematic scope and methodology of postcolonial approaches (ibid., 84). Philologists who follow a humanist or hermeneutic tradition have long had a pronounced focus on poetics. Stressing the autonomy of literary modes of expression, they isolate literary texts from non-literary texts and contexts as they have been ‘resistant to the idea that literature [...] has anything to do with politics, on the grounds that the former is either too subjective, individual and personal or else too universal and transcendent to be thus tainted’ (ibid., 62). While it is indeed difficult, Loomba goes on to say that it is still ‘important to keep thinking about the overlaps as well as distinctions between social and literary texts, and to remind ourselves that discourse is not simply another word for representation. Rather, discourse analysis involves examining the social and historical conditions within which specific representations are generated’ (ibid.,

26 Breaking the Silence

85). As strategies of representation and historical, political, economic and social processes heavily depend upon and shape one another, it would be counter-productive and limiting to eclipse these aspects from analysis. Loomba’s arguments clearly make apparent the affinities between postcolonial and cultural studies because both call for an interdisciplinary and contextualising approach that helps to read texts as sites of power relations. Literary Studies In view of these connections and interrelations, however, questions come up as to the characteristics and functions of literature. In fact, literary and other artistic texts can be set apart from discourses such as medicine, epidemiology, economics or law on the basis of their aesthetic dimension. Over the last years, scholars have shown renewed interest in issues of literariness, aesthetics and form (Armstrong 2000, Clark 2000, Mousley 2004, Shrimpton 2005). Not yet have they agreed upon a standardised terminology and have given the approach numerous names such as Aesthetic Materialism, Aesthetic Formalism, New Formalism or New Aestheticism (Shrimpton 2005, 12). Despite this variety, the terms indicate that the approach is indeed concerned with the specificities of aesthetic texts as the object of analysis. Critics can and should pay attention to the socially, morally and intellectually referential qualities of literary or painterly texts – as long as they retain their sense of priority. These are real but merely secondary characteristics of the distinctive mode of discourse which they have chosen to consider. Art for Art’s Sake is not a mark of triviality. For both artists and critics it is the guarantee of their professional and intellectual integrity. (ibid., 15)

Literary and other creative texts are indeed distinct and merit close analysis, as do literary devices and strategies, and therefore make up an important part of this study. Following and prioritising a cultural studies approach, however, I do not subscribe to Shrimpton’s privileging of aesthetic features over, for example, political contexts, nor do I subscribe to such a notion of ‘professional and intellectual integrity’. Jürgen Link, a prominent German literary studies scholar and editor of kultuRRevolution, a journal for applied discourse analysis, has drawn and elaborated on Foucault’s work to develop interdiscourse analysis.10 Exploring and classifying discursive formations, he distinguishes between special discourses and interdiscourses (Link 1988, 285). Corresponding to the diverse information networks of modern societies, special discourses are highly particularised, regulated and 10

Link’s work on interdiscourse analysis has not been consistently translated into English which is why I work with the German texts and offer my own translation.

Mapping the Terrain 27

institutionalised statements and social practices that systematically shape ideas, opinions, sets of knowledge and ways of behaviour, which is, for example, the case in medicine, economics or law.11 The (institutionalised) registers, regularities and processes give coherence to the discourse and define who has access to it. Under the term interdiscourse, by comparison, Jürgen Link subsumes all discursive elements and processes that create connections between these diversified sets of expert knowledge. Exceeding one particular field, interdiscursive elements serve both to cut across and connect discourses and to reintegrate special discourses into everyday contexts of general knowledge (ibid., 288-9). Reversing and compensating for the modern trend of specialisation, interdiscourses further communication and make specialised knowledge more accessible to a broader public of non-experts. Prominent examples are found in literature, art, journalism or mass media (ibid., 293; Link 2003, 14). Interdiscursive functions are dominant in those texts because they serve to popularise and circulate knowledge. The process as such, however, is necessarily fragmentary and incomplete. Due to the growing diversity of discourses, it is impossible to overcome the disintegration; only some dominant elements of historically specific special discourses are selected, accentuated and combined (Link 2003, 14). Informed by these concepts, interdiscourse analysis focuses on the processes of selection, combination and application (ibid., 15) by examining what sets of knowledge are taken from which special discourses and rearranged in interdiscourses. This model is productive for the analysis of creative texts as it does not isolate them but considers their contexts and interrelations with other discourses. Still, it also takes into consideration and underscores the specificity of aesthetic texts, marked, for example, by polyvalence. Appealing to the ideals of explicitness and transparency, special discourses tend to focus on the narrow, more precise and descriptive level of denotation, whereas interdiscourses tend to open up various connotations, include broader themes and meanings and allow for ambiguities and varied readings (Link & Parr 1990, 122). Link’s concept thus helps to explore and analyse a range of texts without neglecting their particularities and characteristics. Interdiscourse analysis is especially pertinent here since HIV/AIDS has been negotiated in and across various discourses. Although the analysis of aesthetic texts is my primary concern, the 11

Special discourses correspond to what Foucault has considered historically specific discursive formations. ‘Whenever one can describe, between a number of statements, such a system of dispersion, whenever, between objects, types of statement, concepts, or thematic choices, one can define a regularity (an order, correlations, positions and functionings, transformations), we will say, for the sake of convenience, that we are dealing with a discursive formation – thus avoiding words that are already overladen with conditions and consequences, and in any case inadequate to the task of designating such a dispersion, such as “science”, “ideology”, “theory”, or “domain of objectivity”’ (Foucault 2002, 41-2).

28 Breaking the Silence

representations do not stand for or by themselves.12 Link’s differentiation between special discourses and interdiscourses allows for locating the representations in HIV/AIDS-related discourses and for analysing the distinctive functions of aesthetic texts. As these theoretical and methodological considerations indicate, I adapt analytical categories from literary, cultural and postcolonial studies because one approach by itself can hardly do justice to the thematic and analytical focus of this study. Still, these critical terms and concepts can hardly be called a ‘tool kit’ because this metaphor falls short of recognising the complexity of the endeavour. Unlike tools, the categories are not simply given and employed to fulfil a particular task at hand (Döring 2008, 16); rather, they help to define and set the ground for the following discussion. 12

Jürgen Link himself highlights the relevance of interdiscourses for cultural studies. He argues that interdiscourses form the ‘core’ of culture and are thus of primary concern to cultural studies, regardless of its different schools (Link 2003, 14).

3

HIV/AIDS as a Taboo Topic A CULTURE OF SILENCE

Statistics HIV/AIDS has long been a taboo topic in South Africa; however, judging by available statistics (as problematic as they might be), the scope of the South African epidemic can hardly be overestimated. According to the UNAIDS World AIDS Day Report 2011, South Africa has the highest number of people living with HIV/AIDS in the world; approximately 5.6 million South Africans are HIV-positive (UNAIDS 2011, 7). Comparing the findings of national health surveys from 2002, 2005 and 2008, it becomes evident that the overall HIV prevalence has stabilised at approximately 11% (Shisana et al. 2009, 30).1 Although variations between men and women are notable, particularly in younger age cohorts, women still face a higher risk of infection in almost all age groups. The results of the three surveys show persistently high levels of HIV prevalence among women, increasing rapidly with age, reaching 6.7% among 15–19-year-olds, 21.1% among 20–24-year-olds and peaking at 32.7% among 25–29-year-old women (ibid., 30-1). Young women aged 15 to 19 are about 2.5 times more likely to be infected than their male counterparts; aged 20 to 24, they are at about a four times greater risk of infection; and in the age group 25 to 29, HIV prevalence among women is about twice as high as among men. For males, by comparison, the epidemic curve peaks at 25.8% among 30–34-year olds. Not only does the epidemic vary in its impact on men and women but also on South Africa’s nine provinces. As for regional estimates, HIV prevalence is lowest in Western Cape (3.8%), Northern Cape (5.9%) and Limpopo (8.8%), followed by Eastern Cape (9%), Gauteng (10.3%), North West (11.3%) and Free State (12.6%) and highest in Mpumalanga (15.4%) and KwaZulu-Natal (15.8%) (ibid., 32). In spite of scientific achievements and the medical progress of antiretroviral treatment, which helps to slow down the progression of the virus and potentially transforms the syndrome into a medically manageable situation, AIDS is still one of the leading causes of death 1

The Human Sciences Research Council (HSRC) conducted national health surveys in 2002, 2005 and 2008. The fourth South African National HIV, Behaviour and Health Survey 2012 is still in progress.

29

30 Breaking the Silence

in South Africa. In 2011, an estimated 43.6% of deaths were related to HIV/AIDS (Statistics South Africa 2011, 7). This high mortality rate can only be explained by the fact that not all of those people in need of medication receive antiretrovirals. By comparison with figures for previous years, the constant and considerable progress in the accessibility of treatment becomes evident. National coverage in adults was estimated to be less than 5% in 2004, prior to the public rollout of medication, and reached about 10% in 2005, 19% in 2006, 28% in 2007 and 40% in 2008 (Adam & Johnson 2009, 665). The percentage of AIDSrelated deaths decreased between 2005 and 2011 from about 52.5% to 43.6% (Statistics South Africa 2011, 7), suggesting a positive trend which can be attributed to antiretroviral therapy. Access to medication has also had a positive impact on life expectancy estimates. Between 2001 and 2005, life expectancy declined but has since increased due to the rollout of medication (Statistics South Africa 2009, 7) so that for 2011, life expectancy at birth is estimated at approximately 55 years for men and 59 years for women (Statistics South Africa 2011, 2). Even though statistics appeal to standards of objectivity and seem to ‘measure’ an ‘empirical reality’, they actually produce meaning and construct their own reality. Due to the silence and stigma associated with HIV/AIDS, it is particularly difficult to gain reliable empirical data on the South African epidemic. Major sources of information are the annual antenatal surveys conducted by the Department of Health since 1990, based on routine blood samples of pregnant women who attend public-sector antenatal clinics. These women make ‘an ideal sentinel group for monitoring the epidemic as they have recently had unprotected sex’ (Dorrington et al. 2001, 7). Limited to pregnant women, however, the surveys as such cannot provide information on total HIV prevalence rates. To estimate the number of South Africans living with HIV/AIDS (including children, men, pregnant and nonpregnant women), scientists use mathematical models to generate statistical projections of the demographic impact of HIV/AIDS. The models are constantly being readjusted and improved on the basis of further research findings in order to make the estimates more precise and accurate; and yet the calculation process indicates that the figures are not to be mistaken for ‘facts’. Resulting from interpretations and projections, the data can, in other words, be considered a construction of the HIV/AIDS epidemic. The production of meaning in HIV/AIDS statistics has fuelled a major political controversy in South Africa over cause-of-death statistics (Nattrass 2007, 92-5; Schneider 2002, 150). In 2001, Thabo Mbeki challenged the assumption that HIV/AIDS is a leading cause of death in South Africa. The independent Medical Research Council, however, released statistics that showed a substantial rise in mortality, especially among young adults, which the researchers attributed to HIV/AIDS.

HIV/AIDS as a Taboo Topic 31

Responding to these findings, the Department of Health and Statistics South Africa, the nation’s official statistics body, stressed that the figures rely on interpretation; thus, they ultimately supported Mbeki’s doubtful stance on the number of AIDS-related deaths. As Nattrass points out, the cause-of-death statistics are of central importance because political and economic responses to the HIV/AIDS epidemic can be justified by the figures. ‘AIDS denialists argue that AIDS death statistics are a figment of the imagination of demographic modellers and that any rise in recorded deaths is a product of either improved collection of death statistics or of poverty’ (Nattrass 2007, 94). Here the consequences of supposedly rigid figures become apparent simply because statistics allow for different readings which are, in this case, shaped by the (political) agenda of Mbeki and his objectors. Furthermore, the statistics of the South African epidemic approximate HIV prevalence, i.e. the total number of people living with HIV, rather than its incidence, i.e. the number of new infections over a particular period of time, usually a year. Not just a negligible epidemiological detail, the choice of statistical research instruments has wider implications for monitoring the epidemic. Prevalence figures can illustrate the general impact HIV/AIDS has, for example, on a particular country, but they provide only a vague picture because they ‘can go up and down for many reasons, including changes in surveillance methods, population migration and deaths of people living with AIDS, as well as new infections’ (de Waal 2006, 4). Consequently, they can indicate but hardly explain increases and decreases in HIV infections. With their limited focus on new infections, incidence rates, by comparison, provide an apt means of evaluating the government’s AIDS management. Since they indicate to what extent prevention strategies were successfully implemented, incidence-based statistics are a central element in the process of curbing the spread of the epidemic. In the 2008 HSRC study, scientists used mathematical approaches to calculate incidence rates indirectly on the basis of the findings of national HIV prevalence rates (Shisana et al. 2009, 37-8). Using data from the 2002, 2005 and 2008 surveys, they assumed that differences in HIV prevalence between the age strata can indicate new HIV infections. They focussed on 15–20-year-olds because the number of AIDS-related deaths still has only a minimal impact on HIV rates among young age groups. Although this methodology is a noteworthy attempt to measure new infections, the calculation is still based on prevalence statistics only and the sample size is too small to estimate incidence, for example, by province. Without reliable figures on incidence levels, however, there is ‘no discernible system of political rewards for success and penalties for failure, so we should not be surprised that governments and international institutions have not made much progress in preventing HIV infections’ (de Waal 2006, 3-4). While the

32 Breaking the Silence

findings of antenatal surveys among pregnant women are extrapolated to the general population and thus apparently serve as indicators of the total HIV prevalence, reliable data on new infections are even harder to come by. Figures on incidence rates depend heavily on regular testing and monitoring as well as on adequate systems of documentation.2 So far these challenges could hardly be met in a society where HIV/AIDS has long been a taboo topic and where the capacity of the health care system on the whole needs further improvement. Nevertheless, statistical figures, even if they are provisional estimates rather than ‘facts’, can help to describe and frame the trends of the epidemic. Yet in order to explain the rapid spread of the virus in South Africa, it is also necessary to shed light on the AIDS politics of South Africa’s governments, which have been heavily criticised for their slow and, at times, highly controversial responses. Scholars have described HIV/AIDS as an ‘epidemic waiting to happen’ (Marks 2002; Walker, Reid & Cornell 2004, 60-87), suggesting that the rapid expansion of the infection has been shaped by the complex social history of South Africa. With its migrant labour system, forced population resettlement and the ensuing disruption of social life, the apartheid regime provided ‘almost ideal social conditions for fostering the AIDS epidemic’ (Youde 2007, 74). Apartheid’s legacies such as social inequality, disempowerment, poverty, violence, unemployment and labour migration have continued to permeate social life; and poor living conditions, malnutrition and a lack of access to adequate health care facilities and equitable treatment exacerbate the HIV/AIDS epidemic. Shula Marks is careful to point out that, although these factors help to explain the spread of HIV/AIDS, they do not cause the infection; in South Africa, as in other regions of the world, it is not only poor people who contract the virus (Marks 2002, 22). Emphasising agency and empowerment as strategies to bring about change, she concludes that ‘we are not simply victims of the past’ (ibid.).

Political & Social Responses Between the unbanning of the ANC in 1990 and the democratic election of the new government in 1994, many politicians, scientists, journalists and AIDS activists were involved in discussing adequate responses to the epidemic. Some strategies to tackle the issue indicated good intentions. In 1992, a national AIDS helpline was launched. In 1993, the National 2

The search for adequate responses to the HIV/AIDS epidemic has led to the question whether or not there should be mandatory notification. The issue has caused political debates in South Africa (Schneider 2002, 147-8; Fourie & Meyer 2010, 102-5): proponents maintain that a notification system would make it easier to monitor the epidemic and to end prejudices, discrimination and denial; critics (among them many AIDS activists and scientists), however, argue against any such regulation as it limits individual rights, consent and confidentiality.

HIV/AIDS as a Taboo Topic 33

AIDS Committee of South Africa (NACOSA) wrote a comprehensive AIDS policy framework (Nattrass 2007, 39-40; Schneider 2002, 146-7; Walker, Reid & Cornell 2004, 86). In 1994, the Department of Health officially accepted the AIDS plan but, overshadowed by more general and immediate challenges of the political transition, AIDS policy was not a high priority in the new ANC government (Iliffe 2006, 142-3; Nattrass 2007, 40; Schneider 2002, 146). Still, focussed on building a ‘New South Africa’ on the basis of human rights, the government under Nelson Mandela advocated, among other issues, the formation of an adequate infrastructure in order to provide the majority of the population with improved health care (Walker, Reid & Cornell 2004, 86). Despite promising plans, the HIV/AIDS interventions of Mandela’s government are mostly remembered for their political debacles and public outcries, indicating a growing gap between the state and civil society movements. In 1996, a scandal erupted around Sarafina II, a musical designed to raise AIDS awareness, when it became public that the project was funded by a 14 million Rand grant from the Minister of Health, Nkosazana Dlamini-Zuma. Protest was triggered both by the high costs considered to be out of proportion to the musical’s outreach and by the apparent secrecy surrounding ministerial decisionmaking. While early discussions about responses to HIV/AIDS were characterised by the large-scale participation of various social agents, there was little contact between politicians (from the Department of Health) and non-governmental personnel after 1994 (Schneider 2002, 147). Another often cited example is the controversy around Virodene, an alleged cure for HIV/AIDS developed by South African researchers in 1997. Biomedical scientists and the South African regulatory authority Medicines Control Council (MCC) were doubtful as to its effectiveness and safety and therefore rejected further clinical trials. However, political leaders, including Thabo Mbeki who was Deputy President at the time, supported the drug as a South African therapy. Their ‘openness to considering Virodene can be read as championing African-initiated science in the context of the agenda for an African Renaissance’ (ibid., 151). Promoting an African response to the African HIV/AIDS epidemic and criticising mainstream AIDS science as dogmatic, the politicians accused the MCC of denying infected people a possible treatment.3 Although the dispute subsided eventually, it has had far-reaching effects and long-term consequences. ‘Not only did this controversy reignite the conflict between government and civil society over the most appropriate way of addressing the AIDS epidemic, but it signalled the start of Mbeki’s distrust for the MCC [...] and his 3

Virodene was eventually tested outside of South Africa but, as it has never been shown to be effective and safe, it has not been registered as antiretroviral treatment in any country (Nattrass 2007, 43; Myburgh 2009, 13-14).

34 Breaking the Silence

subsequent disrespect for the authority of AIDS science’ (Nattrass 2007, 41). As implied in the title of his article ‘In the Beginning there was Virodene’, James Myburgh, editor of a South African political news website, underscores that ‘the ANC’s promotion of, and involvement in, an alternative AIDS cure’ (Myburgh 2009, 2) is central to understanding Mbeki’s AIDS politics. The distrust of mainstream western HIV/AIDS science has long shaped political discussions about the epidemic in South Africa, surfacing especially during Mbeki’s first years as president and giving rise to prominent myths about alleged cures and alternatives to antiretroviral treatment (see Chapter 5). During the 1990s, South Africa witnessed a rapid spread of the epidemic and especially the decade’s early years have been criticised as a ‘missed opportunity for curbing the spread of HIV/AIDS’ (Walker, Reid & Cornell 2004, 86). Looking back at his presidency, Mandela acknowledged his government’s lack of engagement with the epidemic and publicly apologised for it. His regret gained in weight when Mandela’s son died of AIDS-related diseases in 2005 (Leclerc-Madlala 2005, 846-7). The extent of the epidemic can generally be read as a shortcoming in the presidential and ministerial responses. Yet, while better leadership would have reduced the spread, it is too simplistic to blame infection rates merely on government’s lack of action. The argument misses important aspects of South Africa’s socio-historical contexts, as Iliffe emphasises in his history of HIV/AIDS in Africa. Not only did the socio-economic structures of Apartheid make the country an almost perfect environment for HIV, but the beginning of the epidemic coincided with the township revolt of the mid-1980s and its peak took place a decade later during the transition to majority rule, which compelled ordinary people to concentrate on survival and distracted both the outgoing regime and its nationalist successor from making HIV their chief priority. Yet it would be naïve to think that even the most vigorous, stable, and popular government could have prevented South Africa from a major epidemic. [...] South Africa [...] bordered a massive continental epidemic and [...] had no identifiable core group but a great diversity of cross-border contacts that can scarcely now be traced. (Iliffe 2006, 43)

Because of its large HIV/AIDS epidemic and its historically specific situation, South Africa stands out from other regions in Africa and around the world. Still, Iliffe does not analyse this case in isolation but locates the South African epidemic in its larger contexts, thus making apparent geographical, historical and socio-political interconnections. Compared to the Mandela era, the HIV/AIDS epidemic could no longer be overlooked during Thabo Mbeki’s presidency since the expansion of the infection in South Africa became increasingly visible, even beyond the region, due to high-ranking reports on HIV/AIDS by the World Health Organisation and United Nations agencies that

HIV/AIDS as a Taboo Topic 35

brought international attention to the issue (Leclerc-Madlala 2005, 847). The government under Mbeki was therefore expected to develop and implement effective strategies in an attempt to monitor and curb the epidemic. However, especially in his first term as President (19992004), Mbeki’s stance on HIV/AIDS caused major political controversy, leading to his administration often being singled out and blamed for the unchecked spread of the epidemic. In their analysis of AIDS denialism and the history of official responses to the epidemic, Fourie and Meyer do not doubt that Mbeki’s presidency marked ‘an unprecedented concentration of controversy and denialism’ (Fourie & Meyer 2010, 36); but – similar to Iliffe – they contextualise the epidemic in that they pay attention to government inaction prior to Mbeki’s term of office. Discussing HIV/AIDS as a ‘long-wave event’ (ibid., 13), they show that South African politicians of apartheid and the Mandela government also failed to respond adequately to the epidemic. Although Mbeki has meanwhile distanced himself from his earlier denialist views, his past connections, decisions, pronouncements and silences have continued to shape the ambiguous public perception of HIV/AIDS in South Africa. ‘Views that had previously existed as “fringe notions” in the global AIDS debate were brought into mainstream South African AIDS policy deliberations’ (Leclerc-Madlala 2005, 849) when Mbeki sided with dissident scientists who challenged orthodox AIDS sciences by calling into question that HIV causes AIDS.4 Although Mbeki has never publicly denied a possible link between HIV and AIDS, his distrust of mainstream AIDS scientists became obvious, for example, in the configuration of the South African National AIDS Council, formed in 2000, to which no medical researchers or AIDS activists were appointed (Nattrass 2007, 65). In his opening speech at the Durban International AIDS Conference he maintained that ‘it seemed to me that we could not blame everything on a single virus’ (Mbeki 2000). Drawing on statistics of the World Health Organisation he considered poverty, ‘the world’s biggest killer and the greatest cause of ill-health and suffering’, as responsible for AIDS (ibid.). Of course, no one would deny that poverty and malnourishment play an important role in people’s health status. Yet, by questioning whether a ‘single virus’ can be responsible for a syndrome like AIDS, Mbeki called into question the virology of AIDS. Controversies about what causes AIDS also resulted in debates about medication and in questions of whether antiretroviral therapy is the best possible therapy. The repercussions of this dispute are not to be underestimated because treatment is a key issue with consequences 4

For example, the make-up of Mbeki’s Presidential Advisory Panel on AIDS caused major controversy because many of its members were dissidents (Cherry 2009, 26-9; Cullinan 2009, 94). Peter Duesberg and David Rasnick, for example, used the panel as a forum to circulate their opinions that there is no connection between HIV and AIDS, that antiretrovirals are toxic and blood tests inaccurate (Leclerc-Madlala 2005, 849).

36 Breaking the Silence

for the social stigmatisation of the virus and of people living with HIV/ AIDS. ‘The availability of treatment would sever the link between AIDS and death and begin to undo the fear and shame that prevent open discussion’ (Walker, Reid & Cornell 2004, 127). Government under Mbeki regarded antiretrovirals as toxic and questioned whether the benefits of this treatment would really outweigh its risks and side effects. Manto Tshabalala-Msimang, the Minister of Health, followed this stance on HIV/AIDS and antiretrovirals. Sceptical of drug-based strategies for managing the epidemic, she supported alternative dietary interventions. While nutritionally rich and balanced food is, of course, beneficial for all people regardless of their HIV status, TshabalalaMsimang focussed on particular dietary components: she advocated a healthy nutrition of beetroot, lemon, garlic and African potato, thus acquiring the nickname ‘Dr Beetroot’.5 In keeping with this viewpoint, South Africa’s conference booth at the International AIDS Conference in Toronto in 2006 featured these vegetables (Nattrass 2007, 9), thus presenting them as a governmentally approved strategy of coping with the infection. Critical comments and protests by AIDS activists, by conference convenors, visitors and scientists helped to put into international focus South Africa’s AIDS policy and to generate negative media publicity (ibid.). Doubts about the safety and effectiveness of antiretrovirals are a major reason why the provision of medication through the public health care system was delayed. Nonetheless, the government’s scepticism is not the sole reason. Bearing in mind the legacies of apartheid and South African socioeconomic realities, equitable access to treatment has posed major challenges that range from establishing, improving and maintaining health care facilities to meeting people’s basic needs concerning, among others, nutrition, water, housing and social security (de Waal 2006, 111). Similar to these resource constraints, the costs of antiretroviral therapy were a crucial factor. As the prices for the ‘highly active antiretroviral treatment’ (HAART) fell, however, the investment was no longer ‘an insurmountable obstacle. The decision not to provide them [antiretrovirals] is a social and political one, rather than economic’ (Walker, Reid & Cornell 2004, 126). In 2000, the costs of 4000 Rand per person and month had been too high for a universal rollout, but by 2003 they were down to 1000 Rand so that publicsector medication programmes were no longer unaffordable for South Africa’s health care system (ibid., 126-7). Arguing that antiretroviral therapy had become ‘cost-effective if not cost-saving’ (Nattrass 2007, 81), economists like Nicoli Nattrass underscore that government’s 5

Some of these nutritional interventions may even be harmful to people living with HIV/AIDS. The African potato was, for example, ‘shown to reduce CD4 counts and cause bone-marrow suppression in HIV-positive people’ (Nattrass 2007, 143); and both the African potato and garlic can interact with antiretrovirals, which is why they are not recommended for people who receive treatment (ibid.).

HIV/AIDS as a Taboo Topic 37

resistance against antiretrovirals was not based on purely economic reasons but had, after all, clearly political overtones. Furthering the idea about the government’s central motives, Iliffe speaks of ‘an insecure regime’s anxiety to maintain control over a situation perceived as threatening’ (Iliffe 2006, 145). He argues that government under Mbeki was apprehensive of political opponents, social organisations, AIDS activists, scientists, pharmaceutical companies and the international public as they might pressure the state into supplying antiretrovirals, ‘at the expense of its authority, its health priorities, and its wider development programme’ (ibid.). In his argumentation, Iliffe thus makes evident how questions of authority have shaped South Africa’s AIDS policy. Debates about the provision of antiretrovirals thus mainly come down to the negotiation of costs as well as political reputation and power. The controversies have frequently been described with war metaphors as a ‘fight over medication’, as a ‘struggle’, a ‘battle’ or, to cite the title of Nattrass’s publication, as a ‘mortal combat’ (Nattrass 2007). Presenting the issue as a matter of life and death, these phrases highlight the gravity of the epidemic for individuals, society and the state. In the late 1990s, the first major political and legal dispute between proponents of the medication and sceptical politicians was about antiretroviral drugs (Zidovudine and Nevirapine) that were shown to reduce the risk of mother-to-child transmission during pregnancy or delivery. Politicians were opposed to providing this medication, not least because of the high costs. They held on to this explanation even when the pharmaceutical manufacturers cut the price for poor countries by 75% and economists considered prevention programmes to be cheaper than treating HIV/AIDS in children (Iliffe 2006, 143). Because of this continued opposition to antiretrovirals, Keyan Tomaselli discusses the government’s political agenda in terms of ‘ideology’, ‘pseudo science’ and ‘sham reasoning’ (Tomaselli 2009). Although Mbeki and other leading politicians seem to rely on scientific arguments, their response is predetermined and not influenced by changes in the AIDS field. So when antiretrovirals became an affordable treatment option, it was apparent that ‘government itself became the main obstacle to treatment rollout’ (Fourie & Meyer 2010, 39). In 2002, the controversy was settled when a Constitutional Court ruling ordered the Department of Health to provide a national prevention programme, finding that the government’s policy had not met its constitutional obligation to advance adequate access to health care services (DOH 2009, 24; Heywood 2003, 311-12; Nattrass 2007, 98). Although antiretrovirals were then accessible for HIV-positive pregnant women to prevent an infection of their babies, the introduction of antiretrovirals for treating people living with HIV/ AIDS caused another stir. Treatment programmes were not initiated until 2004 and at first made slow progress as they were not launched

38 Breaking the Silence

in all provinces until the end of 2005 (Nattrass 2007, 193-4), albeit with varied success. In the Western Cape approximately every second person in need of antiretrovirals received the medicine, whereas in other provinces like KwaZulu-Natal, Mpumalanga, Free State and the Eastern Cape the coverage of therapy was much lower with about 20%, which means that only every fifth person in need of treatment received antiretrovirals (ibid., 131). This sketch of political responses to the South African HIV/AIDS epidemic is not meant to obscure existing inconsistencies within state policies and practices. Although leading politicians questioned the virology of HIV/AIDS and supported alternative medicines rather than antiretroviral treatment, government AIDS programmes such as the free distribution of condoms were still based on the orthodox biomedical understanding that AIDS is caused by the sexually transmitted virus HIV (Nattrass 2007, 50; Schneider 2002, 153). Between 1997 and 2000, the HIV/AIDS and STD Directorate of the Department of Health conducted a state-funded multimedia campaign, known as Beyond Awareness Campaign, to promote social change. Cooperating with non-governmental organisations and community initiatives, the campaign developed multilingual communication materials and promoted participatory activities such as the AIDS Memorial Quilt (Parker 2000; Tomaselli 2009, 576-7). Moreover, contrary to attempts at centralisation, provincial governments were able to act independently, as the introduction and extension of programmes for the prevention of mother-to-child transmission very well shows. In spite of the national government’s disapproval, the provincial government of the Western Cape has since 2000 offered antiretrovirals to pregnant women living with HIV/AIDS. Political resistance to the national health policy also grew in some ANC-controlled provinces. In early 2002, for example, antiretrovirals became available in various hospitals in Gauteng, not only at designated pilot sites (Nattrass 2007, 100; Schneider 2002, 154). There are also individual politicians whose position on HIV/AIDS does not comply with official government policy. The ANC Member of Parliament Pregs Govender resigned from office in 2002 in protest against an arms deal, arguing that the money should rather be used to face HIV/AIDS, poverty and violence (Govender 2009). In 2006 and 2007 during the prolonged sick leave of Tshabalala-Msimang, the Deputy Minister of Health Nozizwe Madlala-Routledge was in charge. Based on her orthodox biomedical understanding of the virus, she promoted a rapid rollout of antiretroviral treatment and consulted with civil society activist groups to address the management of the epidemic. In a controversial act, she was dismissed by Mbeki soon after Tshabalala-Msimang returned to office (Fourie & Meyer 2010, 137-42). Discontent was also growing in civil society among AIDS activist groups and scientists over what was thought to be an inadequate

HIV/AIDS as a Taboo Topic 39

response by the Mbeki administration to the epidemic. In 2000, 5,000 international scientists signed a proclamation outlining established HIV/AIDS science, thereby openly confronting dissident views (Nattrass 2007, 67-8; Schneider 2002, 149). Launched at the International AIDS Conference in Durban, the statement became known as the Durban Declaration. Subsequently published in the influential science journal Nature, the petition has received worldwide attention. The Durban AIDS Conference is also notable for a speech by Nkosi Johnson, an eleven-year-old Zulu orphan living with HIV/AIDS. Nkosi spoke out about the stigmatisation of the virus and discrimination against people living with HIV/AIDS; he also called on the South African government to provide antiretrovirals to prevent the transmission of the virus from mother to child. A year later, in June 2001, he died of AIDS-related diseases and was awarded posthumously the World’s Children’s Prize for the Rights of the Child, commonly known as the Children’s Nobel Prize. It was his outspokenness that made Nkosi Johnson a national figure or ‘brave hero’ (Cameron 2005a, 115) in the campaign for antiretrovirals and for destigmatising the virus. In the controversies over the use of antiretrovirals for prevention and treatment, the Treatment Action Campaign (TAC), the ‘largest civil society body and the most effective national formation for organising people around HIV/AIDS in South Africa’ (Leclerc-Madlala 2005, 849), has taken on a particularly prominent role. In December 1998, Zackie Achmat and others founded this South African AIDS activist grassroots organisation which has strong human rights elements in that it campaigns for equal access to antiretroviral treatment and health care for people living with HIV/AIDS and for the prevention of HIV/AIDS. TAC used to be part of the government-sponsored National Association of People with AIDS (NAPWA) that had been established in 1994. ‘With paid officers and provincial branches financed by the state, it [NAPWA] was active in education and training but did not create a grassroots movement’ (Iliffe 2006, 144). Dissatisfied with these structures and limitations, activists around Achmat first established TAC as a ginger group within NAPWA; yet in March 1999, after NAPWA had failed to campaign for the use of antiretrovirals in programmes for the prevention of mother-to-child transmission, they formed an entirely independent organisation (ibid., 144-5). In its early years, TAC was mainly a ‘single-issue campaign’ (de Waal 2006, 38), promoting, as its name suggests, universal access to antiretroviral treatment. Working towards this goal, TAC’s political strategies were marked by a critical and pragmatic engagement with government’s AIDS policies (Robins & von Lieres 2004, 581). In 2001, the activists sided with the South African government in a legal case with international pharmaceutical companies over drug patents and the use of cheap generic antiretrovirals to treat people living with HIV/AIDS in poor countries. The negotiation

40 Breaking the Silence

was successful as the manufacturers reduced the drug prices and allowed developing countries to produce generic versions (Robins 2004, 663). Despite this promising outcome, the government under Mbeki did not start to implement national antiretroviral prevention and treatment programmes, although they had become feasible. In response to this delay, TAC filed a constitutional claim against the government and finally secured a ruling that forced the government to provide antiretrovirals to HIV-positive pregnant women (Nattrass 2007, 95-100). Although this ruling was a major victory, TAC continued to demand a more comprehensive rollout of antiretrovirals as AIDS treatment. As a means to achieve its ultimate aim, the activists launched a civil disobedience campaign in 2003: they organised demonstrations, occupied government buildings and police stations and interrupted speeches of leading politicians, especially Manto Tshabalala-Msimang (ibid., 114-15). As these cornerstones in the organisation’s history show, TAC was ‘able to mobilise social and political pressure, as well as utilise the power of the courts to force government to alter its direction’ (ibid., 12). South Africa’s ‘state policy on AIDS owes much to tireless efforts by this group to prompt government into action’ (Leclerc-Madlala 2005, 849) and – despite its recent funding crisis (TAC 2012) – TAC has continued to hold the government accountable for comprehensive health care services for people living with HIV/AIDS. Unlike leading politicians of Mbeki’s administration, South Africa’s current President Jacob Zuma does not subscribe to dissident views on HIV/AIDS. Nevertheless, it became very much a talking point during his rape trial in 2006 when he admitted that he had had unprotected sexual intercourse with an HIV-positive woman and took a shower immediately afterwards to reduce the risk of infection.6 Backtracking on this statement after he was acquitted of rape, Zuma apologised for being irresponsible and not using a condom (Nattrass 2007, 170). Although respecting his regret, AIDS activists criticised that his apology cannot undo the effects of his behaviour and statements. Paradoxically, Zuma used to head the National AIDS Council that advocates the use of condoms. As a leading politician, he has had the power to make public his views on HIV/AIDS and to reach a large audience of South African citizens. Despite this infamous incident, however, Jacob Zuma’s comments on the epidemic have met with public approval as they indicate political commitment and a break with the controversial standpoint long held and perpetuated by Mbeki and Tshabalala-Msimang. In May 2005 in his address to the National Assembly, Zuma, then Deputy President, clarified that a healthy diet cannot replace antiretroviral treatment but can only serve as an additional intervention to improve people’s health. 6

For a timeline of the Jacob Zuma rape trial, see Evans & Wolmarans 2006.

HIV/AIDS as a Taboo Topic 41 Part of the management of HIV and AIDS includes the need to alleviate poverty and provide nutrition for people infected with HIV, in order to build the body’s defence mechanism. Let me emphasise that our position is that nutrition is not a substitute for appropriate treatment, but prolongs good health and serves as a solid foundation that determines the success of other medical interventions. (Zuma 2005)

In his presidential speech on the occasion of World AIDS Day 2009, Zuma spelled out his government’s HIV/AIDS guidelines: central changes to previous policies concern plans for an earlier rollout of antiretrovirals to people living with HIV/AIDS, to pregnant women and to children. Zuma also acknowledged the efforts of ‘individuals and groups who have worked tirelessly to educate, advocate, care, treat, prevent and to break the stigma that still surrounds the epidemic’ (Zuma 2009). Promoting a new beginning in the national policy, Zuma concluded his speech with an optimistic outlook. Let today be the dawn of a new era. Let there be no more shame, no more blame, no more discrimination and no more stigma. Let the politicisation and endless debates about HIV and AIDS stop. Let this be the start of an era of openness, of taking personal responsibility, and of working together in unity to prevent HIV infections and to deal with its impact. (ibid.)

Employing rhetorical strategies – especially the anaphora ‘let’ and the ‘dawn’ metaphor – he gives a vivid account of how the South African epidemic should be dealt with from that point on. In so doing, he implores his listeners to work towards this aim as well and to cooperate with the government in its efforts to gain control of the spread of the infection. Feeding into this new era of responsibility, the government under Jacob Zuma initiated a National HIV Counselling and Testing Campaign aimed at mobilising South Africans to get tested regularly.7 Compared to the policy of voluntary testing, the campaign promotes routine testing where any patient at any health facility is counselled and offered a test, regardless of individual ailments. As people can decline the offer, the test is still voluntary; however, the programme presents the test as part of a regular health-seeking practice that is not targeted at certain ‘risk groups’ only. On the occasion of the official launch of 7

The health department considers the campaign a success: more than 13 million South Africans were tested for HIV between April 2010 and August 2011 (South African Press Association 2011). There had been critical voices among AIDS activists and scientists as to whether the country’s underresourced health system would be able to cope with the consequences of the mass-mobilisation, such as an increased demand for counselling, support and treatment (Parker 2010). Mark Heywood of the South African National AIDS Council (SANAC) is well aware of the weaknesses in the health system. Nonetheless, he clearly supported the campaign. ‘We can’t say that because we’re not 100% ready, we can’t do this. We know for a fact that almost 1000 people die of Aids on a daily basis because they’re avoiding testing for HIV and they don’t understand how treatment works. There is a big price to pay for doing nothing or doing too little.’ (Heywood in Parker 2010)

42 Breaking the Silence

the campaign in April 2010, Zuma disclosed his HIV status in public, saying that he tested negative (Timse 2010). Stressing that test results are confidential, he stated that by making public his HIV status he does not want to pressure others into following his example. Although it is easier to publicise negative test results than a positive HIV status, Zuma still speaks out and breaks the taboo with which HIV/AIDS has been associated. Announcing that he himself has regularly gone for a test, he encourages South Africans to know their status. With his openness, he furthers the campaign for testing and personally reinforces government’s efforts to develop effective prevention strategies. Zuma’s AIDS policies have been received positively throughout South Africa because the strategies are aimed at attending to the epidemic and breaking with the culture of silence, stigmatisation and discrimination that has long dominated political responses. ‘South Africa has moved from pariah status to a country acclaimed for its progressive HIV policies. This is clearly the result of the right leadership at the right time!’ (Pillay 2012, 77)

Creative Responses Not only did it take the South African government years to prioritise the epidemic, the issue was also scarcely addressed in literary and cultural products (Godby 2003, 17; Hawley 2004, 39). As early as 1993, Judge Edwin Cameron cautioned that ‘we risk a failure of words, of concepts, of sympathetic insight in the face of AIDS. We need to fight this failure. We need to respond with imagination and compassion to what is happening around us’ (Cameron in Ndebele 2004, 9). While the Beyond Awareness Campaign was one of the early responses that used participatory cultural activities to further AIDS education and to advance social change, HIV/AIDS has been tackled more frequently in recent years. South Africans have begun to respond creatively in literature, films, sketches, newspapers, cartoons, photographs and other pieces of art, thereby bringing the epidemic to public attention. To name but a few examples: in an attempt to break the silence, to destigmatise the virus and to encourage people to know their health status, the Sunday Times launched a campaign in 2006 called ‘Everybody Knows Someone’ in which readers are asked to share their stories about and experiences with HIV/AIDS by having them published in the newspaper or on the website. In 2002, Takalani Sesame, the South African version of the children’s TV programme Sesame Street, introduced Kami, an HIV-positive puppet, as a means of AIDS education (Coertze 2011). In his programmes like ‘Foreign Aids’ (2002), comedian Pieter-Dirk Uys (also in the role of his alter ego Evita Bezuidenhout) makes use of humour and satire to approach the epidemic, as does the cartoonist Zapiro in his drawings.

HIV/AIDS as a Taboo Topic 43

Focussed on literary representations, the title of Hawley’s article ‘The Emerging Fictionalisation of AIDS in Africa’ (2004) points out that this shift has taken place not only in South Africa but also in other African countries. Highlighting the increasing visibility and complex imaginative exploration of HIV/AIDS in African fiction, he discusses selected texts which, as he concludes, indicate that African writers have begun to face the epidemic in their works (Hawley 2004, 44). Nadine Gordimer edited an anthology Telling Tales (2004) that attends to HIV/AIDS, albeit in a different way from Hawley’s argument on the emerging fictionalisation of the epidemic. The stories themselves do not take the virus as their subject matter, as Gordimer herself clearly states in the introduction (Gordimer 2004, x); all proceeds from the book’s worldwide sales go to the non-profit organisation Treatment Action Campaign. Writers, publishers, literary agents, artists and others participated in the project, as Gordimer highlights in her acknowledgements. Twenty-one internationally established authors, including the Nobel Prize Winners in Literature Gabriel García Márquez, ¯ Günter Grass, Kenzabur¯o Oe, José Saramago and Nadine Gordimer herself, contributed their texts without receiving any fee or royalty. Around the world publishers produced and distributed editions of the book without being paid for their efforts. Moreover, Kofi Annan, then Secretary-General of the United Nations, threw his weight behind the project by authorising the book launch at the United Nations in New York. Therefore, the anthology indirectly takes on the epidemic in that it raises money for an AIDS activist organisation, although the texts as such do not focus on the virus. By comparison, the anthology Nobody Ever Said AIDS (2004), collected and edited by Nobantu Rasebotsa, Meg Samuelson and Kylie Thomas, includes thematically relevant poems and short stories from southern Africa that make HIV/AIDS an issue and that contribute to the emerging fictionalisation. In her book review, Lizzy Attree praises the anthology as this ‘long-awaited collection is ground-breaking in its scope and courageous in its attempt to uncover taboos around the devastating disease of AIDS’ (Attree 2006, 151). Reflecting on the process of compiling texts, Meg Samuelson and Kylie Thomas emphasise in their introduction that they first encountered HIV/AIDS as a completely under-represented issue. At the beginning of 2002, when they began to work on the project, ‘there was virtually no published creative writing in Southern Africa in English by or about people living with HIV/AIDS, nor by or about those who are witness to their lives and deaths’ (Samuelson & Thomas 2004, 11). To generate literary texts that engage the virus and its effects, the editors ran a writing competition which met with an ‘overwhelming response’ (ibid.). This might be surprising as HIV/AIDS has often been neglected; yet bearing in mind its impact on southern African realities and people’s lives, this response

44 Breaking the Silence

should not come as a surprise at all. As a result of the competition, the volume brings together established authors from the region such as Achmat Dangor, Antjie Krog, Sindiwe Magona, Dambudzo Marechera and Phaswane Mpe as well as previously unpublished writers. All of them agreed to donate their royalties in order to make the anthology available in schools and libraries across southern Africa (ibid., 15). While this donation practice seems to be similar to Gordimer’s project, the two anthologies, Telling Tales and Nobody Ever Said AIDS, differ in their social functions and levels of engagement with the epidemic. With the help of authors, publishers and an international reading audience, Nadine Gordimer tried to raise money for a locally operating AIDS organisation, whereas Nobody Ever Said AIDS aims at raising awareness of the virus, especially among people in southern Africa, by addressing HIV/AIDS-related issues on the level of representation. To ensure that the volume reached its target audience, the proceeds were used to distribute the anthology in the region. In the following pages, selected texts that forge creative responses to the epidemic (some of which are taken from the anthology Nobody Ever Said AIDS) are discussed. Representing the virus, they also consider the silence surrounding HIV/AIDS and its connotations of secrecy, shame, denial and disclosure. In so doing, they attend to HIV/ AIDS without ignoring or neglecting its status as a taboo topic in South African society. Talking Round the Issue In her poem ‘Nobody Ever Said AIDS’ (Maluleke 2004), which gives the eponymous anthology its title and opens the collection, Eddie Vulani Maluleke ‘drive[s] home the devastating power of silence’ (Attree 2006, 152). She thematises the issue of denial and its deadly consequences when people deceive themselves and others as to their health status. Still, Maluleke does not openly confront the issue but writes around the subject. Although the title sets the focus and shapes the readers’ expectations, HIV/AIDS is not named explicitly throughout most of the poem, but only implied. Maluleke thus finds a way of approaching a taboo topic. Describing Friday nights at a shebeen where people drink and dance, the poetic voice starts out by looking back at a time: When we knew That fear came from A Boer face Police raids Rubber bullets Before Fear was making love (18)

HIV/AIDS as a Taboo Topic 45

Standing in a line by itself, the word ‘before’ is emphasised. As a temporal adverb it indicates a turning point that here distinguishes apartheid, when people were afraid of Boers and policemen, from the era of HIV/AIDS, when danger and fear paradoxically came to be associated with ‘making love’. Although the virus is not named, it becomes evident in the reference to the risk of infection through sexual intercourse. The line ‘When we knew’ implies that during apartheid it was easier to recognise policemen, for example, as opponents since they were marked by their uniforms and weapons, whereas HIV/AIDS is harder to visualise because ‘The enemy was in our bodies’ (19). The infection becomes visible only in symptoms like coughing and weight loss. Yet these bodily manifestations are not attributed to the virus. As the title suggests, ‘Nobody Ever Said AIDS’; instead, people claimed to suffer from TB, pneumonia, flu or cancer. All got sick and skinny like broomsticks They started coughing [...] Then they died of TB In 1996. TB? (18)

The use of pronouns like ‘all’ and ‘they’ suggests that the cases described are not extraordinary but follow a common pattern of physical deterioration. TB is named and, at first, seems to be accepted as the cause of death; but in a later line the explanation is challenged, indicated by the question mark. Although doubts as to the cause of death are expressed, the lyrical voice does not investigate the issue any further, leaving it up to the readers to draw connections between the situation described and HIV/AIDS. Throughout the poem the line ‘That was me’ (17-18, 20) is repeated again and again which indicates the speaker’s self-conception, in comparison to ‘That was them’ (19). Drawing on the binary opposition ‘me v. them’, the lyrical persona sets itself apart from others who refrain from sexual intercourse in the face of the epidemic. HIV does not discriminate but can affect everybody, regardless of one’s sex, age, race or class. Referring to ‘Men in big cars’ (18), the poem illustrates that the virus cuts across social hierarchies since ‘big cars’, suggesting a privileged life-style, do not help to prevent the infection. Drawing on repeated political controversies about the infection’s origin, the poem indirectly refers to the virology of HIV/AIDS and stresses that poverty does not cause HIV/AIDS; although, indeed, it is a major reason for the rapid spread of the infection in South Africa. Moreover, the focus on ‘men’ can be read as a sign that in Europe and North America homosexuals are considered to be ‘at risk’, whereas in sub-Saharan Africa HIV prevalence is also high among women.

46 Breaking the Silence

HIV/AIDS is presented as a pandemic that occurs in different regions around the world (18). Enumerating places as well as various groups of people, the poetic voice highlights the impact HIV/AIDS has had. Shebeen queens died The Boers died The policemen died The children were born dying [...] Gay men died Miners died (19)

The lyrical voice is not spared, either, because the speaker itself and its family members also cough and die (19). The list of cases does not include names, thus emphasising that HIV is not discussed as a phenomenon concerning certain individuals only. Although the first names of ‘Jimmy’, ‘Petros’ and ‘Jabu’ (17-18) are identified in the poem, the individualisation is broken up to indicate that these three can also stand for larger communities. In the final stanza, all groups are brought together through the first person pronoun plural ‘we’ and ‘us’, summarising that all people are affected. We all died Coughed and died We died of TB That was us Whispering it at funerals Because nobody ever said AIDS (20)

HIV/AIDS has been silenced; it is not spoken about openly but only addressed in a whisper, suggesting a taboo or secret. This behaviour ends, as the poem claims, in death. The whole poem is written in the past tense and thus suggests that the lyrical voice looks back in time, implying that the situation has changed and that denial is no longer a major problem. Despite this optimistic reading, the poem also signifies that infection equals death. This judgement might be a too pessimistic outlook because HIV/AIDS need not be fatal as it can be medically managed with antiretrovirals. Yet, similar to the AIDS memorial by Brett Murray (see p. 72), the poem serves as a reminder of the epidemic and as a warning. As long as people close their eyes to the virus, as long as the basic needs of people living with HIV/AIDS are not met and they do not receive treatment, people will continue to die of AIDS-related diseases, even if their deaths are reported as being due to some other and less stigmatised cause such as TB or pneumonia. A likely reason for such misclassification is the culture of denial and silence: out of fear of stigmatisation and discrimination, people living with HIV/AIDS keep silent about their

HIV/AIDS as a Taboo Topic 47

infection so that their death is not openly attributed to the syndrome. As it is a communicable infection, the relatives of the deceased might also try to keep the HIV infection secret. If the actual cause of death became public, they might be suspected of being HIV-positive as well, possibly infected by the deceased one. Looking at statistics, however, HIV is very likely the hidden cause for some of the listed deaths because the registered diseases – parasitic infections, for example – are rarely fatal in people with a properly functioning immune system (Anderson & Phillips 2006, 70-1). The explanations for and consequences of disguising AIDS-related deaths make apparent that the poem ‘Nobody Ever Said AIDS’, which associates the virus with death, is not outdated, despite the availability of antiretroviral therapy. In South Africa, there are some prominent examples of cases in which HIV/AIDS has been the alleged but not officially stated cause of death. It was rumoured that the writer Phaswane Mpe, who died at the age of thirty-four in December 2004, died of AIDS-related diseases. Similar to his case, there was speculation that the Zimbabwean author Yvonne Vera’s death at the age of forty was caused by AIDS, although it was officially attributed to meningitis (Attree 2005a). Pakamile ‘Parks’ Mankahlana, who served as presidential spokesperson under both Mandela and Mbeki, died in October 2000, aged thirty-six. Having been a prominent figure, his early death also stirred public interest and speculation and was widely believed to be AIDS-related. Although the government officially attributed Mankahlana’s death to ‘a long illness’ (Government Communications 2000), neither the ANC nor his family could end rumours about the cause of death. Mankahlana had always been at the forefront of the HIV/AIDS debate in South Africa. In his public role, he spoke for the government, thus representing Mbeki’s controversial stance on the virus and the refusal to offer antiretroviral treatment through the public health care system.8 Referencing the case of Parks Mankahlana, the cartoonist Zapiro published a cartoon on 2 November 2000 in the Sowetan that shows a question mark looming large over Mankahlana’s open grave (see Illustration 3.1). The question mark addresses issues that his death has brought up and that are about to be buried: ‘denial’, ‘secrecy’, ‘stigma’, ‘silence’, ‘invasion of privacy’, ‘openness’, ‘public interest’, ‘dissidence’, ‘AIDS’. The question mark is derived from the letter ‘P’ in ‘Parks’, indicating how intricately Mankahlana is connected with these themes. Although triggered by this particular incident, the issues are simply enumerated and presented in such a general way that they are not limited to Parks Mankahlana. It is up to the viewer to make 8

Of course, no one is under obligation to disclose his or her HIV status. It is, however, the pervasive culture of silence which, ironically, produces and nourishes secrecy and the shame associated with HIV/AIDS. Indeed, there are many ways of speaking about and around it without people speaking out about their own health status. This will become apparent in the textual analyses.

48 Breaking the Silence

sense of the bullet points, to analyse how they relate to each other and to the overall topic of HIV/AIDS. Only then do ambiguities, different perspectives and possible conflicts become apparent. ‘Public interest’ in Mankahlana’s HIV status and death, for example, can easily result in what his family and friends might consider an ‘invasion of privacy’. ‘Openness’ can serve as foil to contemporary South African society in which people living with HIV/AIDS and dying of AIDS-related diseases have often decided to keep silent about their infection for fear of stigmatisation, discrimination and other repercussions. Openness can therefore encourage people living with HIV/AIDS to speak out and society at large to foster tolerance as well as public discourse on the topic in a supportive and productive manner. The cartoon itself gives rise to several readings, and in its ‘openness’ provides no pat answers. Instead, it invites and even provokes reflection on roles, attitudes and behaviours towards HIV/AIDS. Peter Mokaba, ANC Member of Parliament and deputy minister in Mandela’s government, died in June 2002 at the age of forty-three. As with Mankahlana, it was rumoured that he was HIV-positive and died due to AIDS-related health problems. Yet Mokaba had always strongly denied being infected and his doctor attributed his death to ‘acute pneumonia, linked to a respiratory problem’ (Shaw 2002). In a cartoon, Zapiro playfully engages with the widespread speculation about Mokaba’s death (see Illustration 3.2). Based on different media reports, three figures attribute it to asthma, pneumonia or malaria; but with the final and ironic comment the cartoon takes a new turn – Mokaba died of ‘denial’, certainly an ailment, but hardly fatal. However if, for example, people living with HIV/AIDS deny their infection for fear of reprisal and do not start antiretroviral treatment, they run a higher risk of dying of opportunistic diseases. Zapiro’s cartoon indirectly attributes Mokaba’s death not only to his denial of being infected with the virus, but, more importantly, also to society’s implication in this culture of denial. Moreover, wearing a white coat and a stethoscope, the final commentator in the cartoon can be identified as a medical doctor. Unlike the others who quote from newspaper and radio reports and are turned to each other, he relies on an official document, the death certificate, and does not engage in conversation. It is this figure, holding the legal document and coded as knowledgeable, who reads Mokaba’s death as being due to denial. As a medical expert he has an influential voice and can speak with authority, which is why it is unlikely that his opinion would be called into question. Denial here does not simply refer to an individual, it is also applied to society at large. In South Africa, stigmatisation and discrimination aggravate the epidemic as it becomes harder for people living with HIV/AIDS to speak out in public about their infection. Published on 16 June 2002, a week after Mokaba’s death, the publica-

HIV/AIDS as a Taboo Topic 49

3.1 Zapiro, The Death of Parks Mankahlana. Sowetan, 2 November 2000. (By permission of Zapiro)

3.2 Zapiro, The Death of Peter Mokaba. Sunday Times, 16 June 2002. (By permission of Zapiro)

50 Breaking the Silence

tion of this cartoon coincides with National Youth Day, a day in memory of youth involved in the resistance against apartheid. Firstly, this date corresponds with Mokaba’s political life. He was a founding member of the South African Youth Congress (SAYCO) and became its first president in 1987. After the ban on the ANC was lifted in 1990, SAYCO was dissolved into today’s ANC Youth League, in which Mokaba served as president from 1991 to 1994. Secondly, this date suggests that the cartoon can be related to the struggles. While Mokaba was actively involved in the ‘old struggle’ against apartheid, he did not take part in the ‘new struggle’ against the spread of HIV/AIDS. Published on Youth Day, the cartoon draws attention to this gap in involvement. The prominent cases of authors and government representatives indicate the extent to which HIV/AIDS has been silenced as a possible or even likely cause of death. Similar to Eddie Vulani Maluleke’s poem ‘Nobody Ever Said AIDS’, Zapiro’s cartoons call attention to the consequences of keeping silent about and stigmatising the infection. Still, representations do not necessarily or exclusively focus on silence and denial, but also explore related issues such as the effects of disclosure. In Khaya Gqibitole’s story ‘Fresh Scars’, included in the anthology Nobody Ever Said AIDS as one of the prize-winning entries of the writing competition, the protagonist and first-person narrator Dlangamandla relates his thoughts and feelings, in fact, his inability to respond when his friend Jola, who just came back home to the village from working in town for the past months, confides in him and tells him that he is HIV-positive. To be precise, Jola does not directly announce that he is HIV-positive but hints at his infection. He states twice that ‘life has defeated me’ (Gqibitole 2004, 92-3) and that he returned to the village because he is ‘home to die’ (92). A woman whom Jola ‘had stayed with for a while’ (96) in town called him to say that she had AIDS. Although he does not spell out the nature of their relationship, the context and his further statements indicate that they had a sexual relationship. ‘Although I still loved and cared for my wife, I began to cheat on her’ (96). He goes on to say that his wife’s newborn son is HIVpositive. Jola’s presentation of events suggests that he feels responsible because he assumes that he infected his wife with the virus who, in turn, passed it on to their son. In the conversation with his friend, he explains why he confides in him, still circling around the issue. ‘But there are just too many taboos in our society. It scares me. [...] But the truth is the more we remain silent the more we will perish’ (95-6). In view of the taboos and in fear of people’s negative reactions, Jola shies away from speaking out about HIV/AIDS; yet, realising the danger of silence and its deadly consequences, he still tries to confront the issue. Not only does the situation affect Jola as the speaker but also Dlangamandla as the listener. Torn between his own well-being and his compassion for his friend, he feels burdened with responsibility.

HIV/AIDS as a Taboo Topic 51 On the one hand I wanted to help my friend, while on the other I did not want to know what was troubling him so deeply. I always tell myself that bad news is like cancer. Once you hear it, it gets you and devours you. Should I tell him to go to his family and not bother other people with his troubles? Why should it be me who should carry his cross? (95)

Faced with his friend’s implied disclosure, he does not know what to do or to say. ‘I knew then that I had to do or say something. But what?’ (96) Posing the question and leaving it unanswered, the narrator involves readers and invites them to imagine what their reaction would be like in such a situation. Dlangamandla’s helplessness might come as a surprise because he is not presented as unaware of the epidemic. The story opens with his daydream about ‘thousands of small white crosses’ (91), symbolically signifying a large number of dead people. Moreover, he recognises and is troubled by changes in his friend’s outer appearance. He compares Jola to a ‘dead locust’ and comments on his ‘skeletal hand which [...] felt as cold as a corpse’, on the ‘deep wrinkles that ran down his cheek like scars’ and on his ‘hollow and colourless’ voice (92). Dlangamandla feels distressed because their encounter creates an ‘agonising silence’ (91), which he tries to break by offering his friend some food. Even prior to Jola’s return, Dlangamandla realised that something was wrong when he recognised changes in the behaviour of Jola’s wife. While she used to be joyful and sociable, she began to isolate herself from the community. These passages indicate both Dlangamandla’s awareness of the epidemic and his inability to respond to Jola’s disclosure. In a culture of silence it is difficult not only to discuss taboo topics like HIV/AIDS but also to hear of them. Similar to the poem ‘Nobody Ever Said AIDS’, HIV/AIDS is the main theme of this story but, still a taboo, it is approached indirectly and carefully in a conversation between close friends. The title ‘Fresh Scars’ can imply traces left on both Jola and Dlangamandla. ‘Scars’ refers to marks that injuries or experiences leave on the body or mind; and the adjective ‘fresh’ suggests that these are new wounds, possibly added to older ones. The phrase allows for various contextualisations since it does not indicate whose scars the story addresses. It can connote Jola’s HIV/AIDS-related bodily symptoms, his fear of disclosing his health status, or even his worries about his wife and son. The phrase can also suggest that Jola’s disclosure affects Dlangamandla so strongly that it leaves a permanent mark on him. For both characters, the present situation adds to previous hardships that they experienced such as being unemployed or being denied access to university education, although they had done well at school. In previous situations, Jola did not despair but managed to become ‘the pride of our village’ (93); yet by the time the story is set, he feels ‘he is a defeated man’ (93). In the end, the ‘fresh scars’ of HIV/AIDS might, for Jola at least, prove to be worse than marks of the past he had managed to overcome.

52 Breaking the Silence

Like ‘Fresh Scars’, Sindiwe Magona’s novel Beauty’s Gift (2008) explores the impact HIV/AIDS has on a group of friends. The alphabetical order of their names – Amanda, Beauty, Cordelia, Doris and Edith – implies a relation that binds them together; all of them are deeply affected when Beauty dies of AIDS-related diseases. The narrator, however, does not begin by outlining this personal dimension but by introducing the epidemic as a general social issue, drawing attention to the vast number of deaths and funerals in the communities. ‘There were too many of them. Way, way too many. Despite government pronouncements that the Aids pandemic was not as widespread as some health experts stated, it was obvious that the township cemeteries would soon run out of space’ (Magona 2008, 18). Due to the many deaths, ‘relatives are forced to line up funerals, programme them, because more than one home in the same family are busy with the same kind of sad work’ (21). Despite this portrayal of the epidemic’s impact on society, Beauty’s cause of death is not made explicit at first. Although the opening chapters describe Beauty’s funeral at the cemetery in Gugulethu, a township near Cape Town, the readers only learn that Beauty suffered from an ‘illness’ (9-10), from ‘TB’ (10). Her friends raise questions about her death: ‘Why is Beauty dead while her playboy husband lives?’ (11) ‘Why had she [Amanda] not confronted Beauty with her suspicions?’ (14) ‘How is it that we didn’t see this coming?’ (16) While these instances imply that Beauty died of AIDSrelated diseases, this assumption is not confirmed until later in the novel. The novel thus weaves its way around the subject. Cutting back and forth between different points in time, the subsequent chapters deal with the weeks before and after Beauty’s death. Although centred on Beauty’s (poor) health, the descriptions are so vague that they allow for different interpretations. When Beauty shows up at Amanda’s birthday with a ‘grotesque face’ (26), with ‘swollen lips’ and ‘a little swelling around the eyes’ (29), her friends mistakenly assume that she was abused by her husband. Beginning to nurse her daughter, Beauty’s mother euphemistically states that ‘Beauty is not well’ (39). As the novel is not structured chronologically but opens with the funeral, the readers, by comparison, are constantly aware that Beauty’s ‘illness’ will be fatal. The characters start to see how serious the situation is when Beauty exhaustedly drifts off to sleep during their conversation and when she grows ‘so thin’ (46) that the narrator describes her as an ‘emaciated stick of a body’ (46), as a ‘skeleton’ (48, 57), as ‘[b]one. Nothing but bone’ (57). Although this description of her physical appearance is incompatible with her descriptive name, ‘Beauty’ can also serve to disguise her condition. It is only after her death that the friends understand the symptoms as indicators of the syndrome. With hindsight, they realise that ‘the signs were there, but we ignored them’ (75). As this comment suggests, the characters are generally aware of the

HIV/AIDS as a Taboo Topic 53

epidemic but overlook HIV/AIDS – at least when they are personally involved. Silence and stigma are particularly evident in the behaviour of some characters. Beauty’s husband Hamilton actively conceals his wife’s condition and interrupts her when she wants to confide in her friends. Commenting on his intervention, the narrator states, ‘Now silence reigns’ (48). The statement can be read as a mere description of the situation in which neither Beauty nor her friends speak; yet it also characterises Hamilton who adds to the secrecy surrounding HIV/AIDS. Hamilton might be trying to keep Beauty’s ‘illness’ secret because it is likely that he also lives with the virus. Similar to Hamilton, Amanda has difficulties confronting HIV/AIDS. Shortly before her death, Beauty finally confides in Amanda and asks her to disclose her status to their friends as well. ‘And tell the others. Tell them what I say to you now. I have Aids’ (74). Amanda, however, struggles to speak out about Beauty’s cause of death, not because she herself is infected but because of the general silence that surrounds the virus. Even though Beauty asked her to tell them her secret, she can’t. She doesn’t understand why, but she just can’t. Now, she just can’t find the right words or the right time, the moment, to say what Beauty has asked her to say. [...] She will tell them because, after all, Beauty wants her to tell them. This is not her secret, not her shame. (60-1)

The words used to discuss HIV/AIDS, ‘secret’ and ‘shame’, show that the virus is more than just a medical condition, it is also a taboo topic. Due to the prevailing silence, Amanda cannot ‘find the right words’ to disclose Beauty’s infection, but finally she overcomes her own reservations and speaks out. Countering the culture of silence around HIV/AIDS, the novel evaluates Beauty’s openness (and also that of Amanda) positively. The friends understand Beauty’s disclosure as a marker that ‘Beauty had loved them to the very last. What a gift!’ (75) As suggested by the novel’s title, Beauty’s AIDS-related death is not only framed in terms of loss and sorrow but also in a more optimistic tone. On Amanda’s birthday, Beauty congratulates her with the isiXhosa phrase ‘Ukhule!’ which means ‘May you grow old!’ (22) Both the repetition of the phrase in the course of the novel and the use of an African language serve to emphasise that this wish is all the more relevant in times of HIV/ AIDS. In retrospect, the friends realise that at the time of Amanda’s birthday Beauty might have suspected or already known about her infection. Again, the readers are in a more privileged position: due to the nonlinear narration, they know more about Beauty’s severe condition than the characters. Shortly before her death, Beauty openly tells Amanda, ‘Don’t die a stupid death, like I am doing! Live!’ (74) It thus becomes evident that Beauty did not use ‘Ukhule!’ merely as a conventional blessing but as a piece of advice that Amanda and the

54 Breaking the Silence

others should look after themselves. The friends raise the question as to how Beauty contracted the virus and their comments imply that Hamilton was unfaithful and infected her (76); yet the novel does not clarify whether this assumption is correct. Although Beauty is outspoken in her warning, she does not comment on her own infection either. To leave the issue unresolved suggests that it is irrelevant how Beauty contracted the virus, it would not have an effect on the plot design anyway. The novel avoids the contentious question of blame and focuses on the more productive issue of AIDS education instead. Beauty’s death and disclosure indeed make her friends reflect critically on their own lives. ‘Beauty wouldn’t want us to be sad, she would want us to fight to live, to fight for our lives’ (78). In keeping with this aim, they try to secure their own health and begin to reconsider their own sexual relations. They ‘fight’ for their lives in that they do not shy away from their plans, even when they encounter ‘resistance’ from their partners. Amanda and her husband Zakes, for example, start their ‘own little cold war’ (89) because Zakes feels accused of being unfaithful when Amanda insists that they take a test or use condoms. To Amanda and her friends, Beauty’s death is a turning point. Their husbands, by comparison, have not realised the impact HIV/AIDS might also have on their personal lives. Similar to Hamilton, Zakes and the others try to evade the issue. While the female protagonists also have difficulties at first to face Beauty’s infection, they soon forge a more intimate bond and begin to talk about HIV/AIDS in terms of its relevance for sexual relations, their lives and families. As evident in this character constellation, the novel shows to what extent HIV/AIDS is interrelated with social conventions and gender roles.9 The idea that an AIDS-related death can function as a lesson in AIDS education is also taken up in another plot line of the novel. The twin brothers Lunga and Lungile Sonti both die from opportunistic diseases. Their family uses Lungile’s funeral to educate the community: they openly disclose Lungile’s cause of death, wear red ribbons, hand out pamphlets on sexually transmitted diseases and invite an activist who speaks about living with HIV/AIDS (83-7).10 The novel thus ends with 9

10

In an interview, Magona comments on gender issues and their relevance in the context of the South African HIV/AIDS epidemic (Attree 2010, 56-9). In his novel When a Man Cries (2007), Siphiwo Mahala also addresses the dynamics of masculinity in post-apartheid South Africa by focussing on the complex social roles of the protagonist and first-person narrator Themba as acting school principal, teacher, municipal councillor in his township community, as husband, father and lover. Themba loses his position as a respected member of his community when he takes advantage of his authority and engages in a sexual relation with the schoolgirl Nosipho, who eventually turns out to be his daughter. HIV/AIDS becomes a central feature of the novel when Themba and the readers learn that Nosipho is HIV-positive and later dies of AIDS-related diseases. Themba’s status, by comparison, remains unclear throughout the novel. See also the book review (Attree 2008) and an interview with the author (Attree 2010). The novel’s local activist organisation is called ‘Vukani’ (Magona 2008, 84), which means ‘Wake up’. This name is an intertextual reference to Magona’s eponymous play (first produced in New York in 2003) that explores HIV/AIDS in the context of other social concerns in post-apartheid South Africa.

HIV/AIDS as a Taboo Topic 55

an optimistic outlook because Beauty’s friends and several members of the larger fictional community have begun to confront the silence and stigma that have long surrounded the virus. The difficulties and effects of disclosure are also explored in one narrative strand of Rayda Jacobs’s novel Confessions of a Gambler (2003), albeit in a different context and character constellation. This novel is one of the few South African representations of HIV/ AIDS associated with homosexuality.11 Compared to creative writing from Europe and the United States, this issue barely figures in South African texts. The heterosexual transmission of the virus that corresponds to South African realities of the epidemic is explored much more frequently. In this novel, the Coloured Muslim woman Abeeda Ariefdien (referred to as Beeda) relates the story from her perspective. Her homosexual son Reza lives with HIV/AIDS and is fairly open about his health status, which is why his disclosure is not discussed as a central or problematic issue. It is Beeda who has to learn how to face and accept her son’s infection. When she states that Reza has ‘some kind of flu’, her other son Zane replies, ‘I suppose we can call it that’ (Jacobs 2003, 28). Although Zane seems to agree with his mother, the sarcastic undertone of his comment makes apparent that there is more to the illness. Zane reads Reza’s condition as an AIDS-related opportunistic illness, whereas Beeda accepts it for what it is or appears to be, the flu. Unlike Zane’s indirect statement, his wife Rabia is more direct and confronts Beeda with Reza’s infection. Beeda, however, only gets angry and does not believe her (29). It is not until later when Beeda visits Reza that she realises that her daughter-in-law is right. ‘Suddenly I knew in my heart that what Rabia had said was the truth. There was no other explanation for his gauntlike appearance. [...] Why had I seen it and not seen it?’ (30) Working with the paradox of seeing and not seeing, this question highlights Beeda’s self-deception. Similar to Beauty’s friends in Magona’s novel Beauty’s Gift, she has noticed but not made sense of Reza’s weak condition because she has been unable or unwilling to face its implications. While Reza himself is not secretive about his infection, Beeda tries to conceal it as she is particularly afraid of gossip in the community. ‘It’s easier to face God than to have the community know your business. God forgives. A community never forgets’ (25). In the course of the novel, however, Beeda starts to tackle the issue. When she reveals Reza’s health status to her friend Garaatie, it becomes evident that HIV/AIDS as such is not the main reason for her secrecy. It is rather the additional meaning conveyed in the message which frightens and embarrasses her. ‘Telling her he had Aids was telling her a lot more. It was admitting 11

Ashraf Jamal’s ‘Milk Blue’, included in the anthology Nobody Ever Said AIDS, is another text in which HIV/AIDS is placed in the context of homosexuality.

56 Breaking the Silence

that my son was gay’ (122). Her statement illustrates that she considers the link between HIV/AIDS and homosexuality to be ‘natural’. Without providing any further explanation, Beeda expects her friend to get the complete picture. Beeda finds it so hard to acknowledge her son’s infection because homosexuality is incompatible with the Muslim faith that defines her identity, family and community. As the story unfolds, Beeda grows more and more confident, willing to tell ‘the truth’ about Reza. ‘People know. He has Aids and that’s it. You can’t stop people from what they’re thinking. No matter what the truth is, they still talk. And the truth is that he’s gay, and he has Aids, and I’m not going to hide it’ (140). Thus, the novel does not so much explore the character of someone living with HIV/AIDS as of someone involved indirectly with it: the mother of a homosexual son with HIV/AIDS who comes to terms and learns to cope with the situation. The readers of the novel are in a more privileged position than the fictional characters around Beeda. As a first-person narrator, Beeda offers the readers insight into her thoughts and views. From the outset, she is very frank about the double life she leads as both a pious Muslim and a woman who goes against religious conventions. She ‘confesses’, to cite the novel’s title, that she has been gambling. This confession structures the whole novel as it forms the major plot line and gives coherence to the text. Moreover, she also reveals secondary secrets, namely her longterm affair with her brother-in-law and her son’s homosexuality and HIV infection. Presented as a complex character both investigating and selfcritically reflecting upon her own behaviour, norms and values, Beeda does not moralise or judge the behaviour of others. Although the novel explores a range of complex social, moral, sexual and religious issues from the point of view of a single character, it does not oversimplify the situation. By exploring HIV/AIDS and homosexuality through Beeda’s eyes and voice, Confessions of a Gambler adds another and – for the African context – uncommon perspective to the representation of HIV/ AIDS. Confronting the Issue in Literary Texts Compared to the texts in which speakers weave their way around the subject, the story ‘Everybody’s Got It, Don’t They?’ by Tonye Stuurman, another prize-winner of the writing competition for Nobody Ever Said AIDS, is more confrontational and directly takes on the issue of HIV/ AIDS from the largely neglected perspective of a female sex worker. As the story’s protagonist and first-person narrator, the sex worker is empowered: raising her voice, she speaks from a subject position and presents her own point of view on the epidemic. The pronoun ‘it’ used in the title opens up space for interpretation, but from the story it becomes clear that the implied reference is ‘the virus’, ‘HIV’ or ‘HIV/ AIDS’. Despite this ambiguity, the title indicates that the epidemic

HIV/AIDS as a Taboo Topic 57

cannot be ignored or denied because ‘everybody’s got it’. The question tag does not so much challenge this statement but is rather a rhetorical strategy, inviting the reader to agree. The engagement with the reader and the outspokenness continue when the story opens with the question, ‘So, what do you want to know?’ (Stuurman 2004, 114) This opening assumes a difference in knowledge and experience between the narrator and the reader. Providing a perspective considered unfamiliar to the implied audience, the sex worker introduces the readers to her life and family background, to the routines of her work and her reasons for working as a prostitute. Well aware of the prejudices against sex workers, she addresses her profession openly. ‘I get paid for sex. That’s it. I have to work for a living, don’t I?’ (114) This frankness hardly allows for a derogatory attitude towards her or her job. The narrator emphasises her statement by adding the phrase ‘That’s it’, cutting short any doubt or judgement. Again, with the help of the question tag, she asks the readers to understand her position and actions. Presenting her work as a reasonable way of making a living, she challenges common stereotypes and undermines binary oppositions in which sex workers are widely classified as ‘other’. In the context of the southern African epidemic where HIV prevalence is high among heterosexuals, the social position of sex workers is further compromised. Since the most likely route of transmission is through sexual intercourse, sex workers are set apart from the ‘general population’ and considered ‘members of a risk group’. In an attempt to channel the fears HIV/AIDS generates, social constructions of the epidemic have frequently worked with the strategy of ‘othering’. Presented as ‘dangerous’, sex workers – as well as other socially marginalised groups that show high levels of HIV prevalence such as homosexuals, drug users or truck drivers – function as scapegoats who can be blamed for the epidemic. However, by presenting the often eclipsed perspective of a sex worker, the narrator clearly points out the shortcomings of this classification. ‘I know all about AIDS and what is happening. [...] I’m HIV-positive and I try to protect myself as best I can. You can only ask the clients to wear a condom – you can’t make them’ (115). Contrary to stereotypes, the sex worker does not characterise herself as ‘dangerous’ or ‘destructive’. While she can try to make her customers wear a condom, she cannot force them because she is financially dependent on them. By blaming prostitutes for the epidemic, the common cultural constructions that favour the ‘general population’ fall short of recognising these unequal power relations. Moreover, the narrator’s depiction of customers supports the argument that the spread of HIV/AIDS cannot simply be blamed on sex workers. Rather than closing their eyes to the risk of contracting HIV/AIDS, clients have to take responsibility for their own bodies and health.

58 Breaking the Silence One of my regulars asked me the other night, ‘So, Cookie, have you tested lately?’ I looked at him and said, ‘Honey, why didn’t you ask me that two years ago when you started seeing me?’ You should have seen the shock on his face. I was surprised that he was surprised. What do these guys expect? (114)

The sex worker sees through the customer’s self-deception and is therefore astonished by his surprise and shock, as the rhetorical question indicates. Providing the usually marginalised perspective of a sex worker, this story serves to confront HIV/AIDS and to challenge widespread stereotypes about sex workers as ‘outsiders’ of society and as scapegoats. Confronting the Issue in Visual Texts Collaborating with people living with HIV/AIDS who are willing to speak out about their status in public, the artist Sue Williamson faces the epidemic head on in the photographic series ‘From the Inside’ (2000-2002), briefly discussed in the introduction. Williamson not only took portraits of people living with HIV/AIDS, she also spent time with them, discussing what impact the infection has had on their lives. The artist has their statements about the virus painted on walls in public places around Cape Town and Johannesburg. Signed with their first names and the attribute ‘HIV-positive’ or ‘AIDS patient’, their ‘messages’ are distinguished from anonymous graffiti (Williamson 2003, 28); and in exhibitions and art catalogues whole names are printed. This willingness to be named clearly breaks with the prevailing silence. In the artwork Williamson juxtaposes the black-and-white portrait with a colour landscape photograph documenting the person’s statement on the wall. Placed directly side by side, it is impossible to look exclusively at either the portrait or the photo of the quote in its context. Although the dual images seem to ‘document’ the people and the impact of HIV/ AIDS on their lives, the setup of the portraits indicates that the people pose for the photographer and that any illusion of insight into their private spheres is staged. Benjamin Borrageiro is shown in bed; Judy Seidman sits at a table in what seems to be a dining or living room, as the glass cabinet and framed pictures in the background suggest; Nosisa Ndlela sits on an armchair with an intricate piece of crochet work thrown over its back, suggesting a living room; and although Johannes Bukhali is shown against a neutral greyish background, he is portrayed in a family context with his parents. Despite the focus on individuals and their private lives, the project is also part of public space because it was exhibited in leading South African galleries and – through the ‘messages walls’ in urban areas – it also reached people in the streets. Traditionally it is the photographer who is in command of the artwork, whereas the subjects are limited in their decision-making and range of action. In ‘From the Inside’, Sue Williamson tries to reduce

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this imbalance and to collaborate with the subjects of her photos so that people living with HIV/AIDS become visible in public through their AIDS statements painted onto walls. Johannes Bukhali literally has a share in the installation because he paints his own quote in bold red letters on a wall in Daveyton, near Johannesburg. As part of the Johannesburg Art City Project in August 2002, the artwork, consisting of two photographs, was blown up to banner size and hung on the Turbine Building in Newtown, Johannesburg, reaching an even larger audience than the gallery-version or the ‘message wall’ in Daveyton. The portrait depicts Johannes Bukhali together with his parents who stand behind him, literally backing him up (see Illustration 3.3). As his parents occupy as much space in the photo as he does himself, they are characterised as an important and influential factor in Johannes’s life. Depicted in a crouching position, Johannes only reaches his parents’ waistlines. This setup is reminiscent of a family photo of parents with child. While the portrait focuses on Johannes and his parents who provide him with support, Johannes’s statement – ‘HIV/AIDS is no longer only for people who are infected, it’s everyone’s task to help!’ – strategically moves beyond family relations and refers to ‘everyone’. Since HIV/AIDS has had such a strong impact on South Africa, the epidemic can no longer be ignored; Johannes calls on all members of society, irrespective of their health status or family relation, to do what they can to engage with the issue. Although the portrait seems to convey a different message, his quote highlights that individuals and the (nuclear) family alone cannot meet the demands; a joint effort of communities and society at large is necessary to face the epidemic. Since the portrait and the statement photos are paired, the dual image brings together personal aspects of an individual living with HIV/AIDS and broader social concerns associated with the epidemic, thereby bridging private and public spheres. Compared to Johannes Bukhali’s piece, Benjamin Borrageiro’s artwork is more concerned with illness and denialism (see Illustration 3.4). Some weeks before Benjamin died of AIDS-related diseases, Sue Williamson made a portrait of him in bed. The portraits of Johannes and Benjamin differ in their range of tonalities. Compared to Johannes’s picture with its balance of greys, blacks and whites, the sepia print of Benjamin has a lower contrast and possesses a wider range of shades. By toning down the differences between very bright and very dark parts of the picture, Benjamin is shown in a more favourable light. Still, he is clearly signified as ill or, in the words of the signature under his painted statement, as an ‘AIDS patient’. Propped up with a pillow against the wall, Benjamin’s position is a sign of his physical weakness. With one of his legs, his arms and upper body uncovered, his extreme skinniness is displayed. His eyes and cheeks are hollow, some of his bones and muscles are visible through his skin. Moreover, he lies on a

(By permission of Sue Williamson)

3.3 Johannes Bukhali. Sue Williamson, ‘From the Inside’, 2002. 90cm x 200cm.

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(By permission of Sue Williamson)

3.4 Benjamin Borrageiro. Sue Williamson, ‘From the Inside’, 2000. 90cm x 200cm.

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62 Breaking the Silence

sheepskin, possibly to make him warm and more comfortable. On his bedside table one can see various objects such as a telephone, some medicine, a cup and a glass. Everything he might need is within reach, thus suggesting that he is in bed for most of the time. His head and upper body make up the centre of the portrait and attract the viewers’ attention. Yet, due to size diminution, his torso is seen proportionally smaller than the elements in the foreground of the photo such as his right foot. His outstretched leg emphasises the depth of the picture, the distance between his foot in the foreground and his upper body in the background. The portrait’s design keeps the viewers at a distance, while Benjamin’s direct gaze at the camera and thus at the audience, creates a connection. Impossible to take in the complete picture at a glance, the portrait calls for closer inspection and engagement. Lying ill in bed, covered partially by a sheet, Benjamin is displayed in a private, even intimate context. However, combined with his written statement, the dual image goes beyond the private into public realms. His quote reads, ‘I’m sick of Mbeki saying HIV doesn’t cause AIDS.’ By referring to Thabo Mbeki, Benjamin presents HIV/AIDS in its political context. Unlike Johannes Bukhali, Benjamin does not paint the statement himself. Nevertheless, his involvement is apparent in the quote’s use of the first-person pronoun and signature ‘Benjamin, AIDS patient’. Moreover, the location is also connected to Benjamin. Painted at an underpass in Gardens, a neighbourhood in central Cape Town, the ‘message wall’ is very close to where he grew up (Williamson in Kauffman & Martin 2003, 30). Written in bright red on a yellow background, his quote is made visible even in the poor lighting conditions of the underpass. Despite the snapshot quality of the photo, with a passing car blurred in the foreground, the statement in the centre of the image is in focus. Although the traffic is of little significance to the ‘AIDS message’ as such, it highlights that the wall is located at a much frequented place in the city. Through his quote, Benjamin criticises Mbeki’s contentious stance and, by extension, government’s AIDS policy in general. In the established figurative sense, the idiom ‘to be sick of’ indicates that Benjamin is angry about Mbeki calling into question the virology of HIV/AIDS. The portrait of Benjamin in bed, however, characterises him as sick, in a literal sense. Drawing on literal and metaphorical meanings, spanning private and public spheres, the dual image opens up space for varied approaches to the epidemic. In his review of the project and the exhibition at the Goodman Gallery, Sean O’Toole pays tribute to Williamson’s political commitment. ‘While firmly rooted in the present, Williamson’s AIDS project suggests a surprising continuity with history, or more pointedly with that mode of expression uniquely grounded in South African experience – protest art’ (O’Toole 2002). With the photos in the series ‘From the Inside’, Williamson returns to strategies characteristic of her earlier art. ‘During

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the 1980s Williamson was best known for work that attempted to make visible some of the people and events rendered as blanks in the national fantasy of apartheid’ (Dawes 2003, 6). In her series ‘A Few South Africans’ she portrayed women involved in the anti-apartheid struggle who were hardly ever shown in official media reports, like Winnie Mandela, Albertina Sisulu and Amina Cachalia. Without denying their aesthetic complexity, the photos have been praised particularly for their ‘political efficacy’ (ibid.). The political dimension of the project ‘From the Inside’ becomes apparent in the reactions it has triggered. Benjamin Borrageiro’s painting was changed soon after its installation at the Cape Town underpass (see Illustration 3.5). Someone crossed out the reference to President Mbeki with black paint – in an attempt to protect the politician from criticism. After remaining on the wall for about two years, the statement was finally eradicated when the whole wall was painted grey in 2003. Although most of the actual graffiti quotes were deleted, they remain visible in the artwork. Furthermore, Williamson added two photos when Benjamin’s dual image was on display in the ‘AidsArt/South Africa’ exhibition, curated by Kyle Kauffman and Marilyn Martin and hosted at Iziko South African National Gallery in Cape Town, from November 2003 to February 2004. One photo was taken by the time the name ‘Mbeki’ had been deleted in the statement and the other when the entire wall had been painted grey. Juxtaposing the original dual image with these two photos calls attention to both Benjamin’s quote and the efforts to conceal it. Paradoxically, invisibility and silence are thus made evident and even prominent. Sue Williamson used a similar strategy for the Joubert Park Project, a non-profit initiative of artists, in Johannesburg in October 2001. Similar to the installation of quotes in the ‘From the Inside’ series, about a dozen statements were put on walls around Johannesburg. However, the team was ordered to remove one ‘message’. A film clip distributed on CD-Rom with the art catalogue Sue Williamson. Selected Work shows the process of cleaning the wall. Opening with an extreme long shot to establish the scene, viewers can read the statement ‘HIV/AIDS doesn’t kill unless we don’t get: the right medicine, the right nutrition, the right living conditions, the right support from family & friends’, signed by ‘Judy, HIV Positive’. When the assistants begin to wipe it out, they are filmed in a long shot from the opposite side of the street (see Illustration 3.6). Elliptical editing and fast motion are used so that viewers can witness the whole cleaning process. The speed of the motion has the effect that the foreground action with cars and minibuses driving by is blurred, similar to the landscape photo of Benjamin Borrageiro’s quote. As static elements of the mise-en-scène, the wall and the quote in the background are in focus, whereas the cleaners’ movements are

(By permission of Sue Williamson)

3.5 Benjamin Borrageiro’s Statement. Sue Williamson, ‘From the Inside’, 2003.

64 Breaking the Silence

(By permission of Sue Williamson)

3.6 Eradicating a Statement. Sue Williamson, Joubert Park Project, 2001.

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66 Breaking the Silence

jerky and accelerated. Through the film techniques, the wall becomes the focal point of attention rather than any other elements in the frame. Due to the temporal ellipses, the clip includes some breaks and fractures. The form corresponds to the clip’s content because, similar to the eliminated time, many questions are left unanswered as to the context of the incident because it does not become clear by whom or why the team is ordered to remove this statement. Although the team follows the order and wipes out the quote, the ‘message’ is not deleted entirely as it is still accessible in this visual document. Therefore, the outcome is paradoxical: while the statement is – for whatever reason – meant to be eradicated, public attention and interest is raised especially because of the ultimately incomplete erasure. The filmic representation playfully oscillates between the poles of breaking with and re-building the culture of silence surrounding HIV/AIDS in South Africa.

4

Imagery

Symbols While the term symbol has been used differently in various academic disciplines, the diverse definitions usually do share one criterion: a symbol is not a rhetorical figure but an object which represents something else (Cuddon 1999, 885; Peil 1998, 519). Unlike signs regarded as arbitrary social constructions that need to be decoded on the basis of cultural conventions, symbols are understood to be more suggestive (de Saussure 1983, 68). Informed by a structuralist approach, Jürgen Link defines symbol as a motivated sign in which a complex iconic signifier, called ‘pictura’, is mapped onto an abstract signified, referred to as ‘subscriptio’ (Link 1974, 168; Link & Parr 1990, 115).1 This signifying process is characteristic of literature and other interdiscourses because it gives way to a range of suggested but unspecified meanings (Link & Parr 1990, 121-4). Highlighting the symbol’s ambiguity, this definition is productive for my study which is based on the understanding that meanings are not fixed but subject to interpretation and change. The Red Ribbon The one object receiving the greatest attention around the world as a ubiquitous symbol of the HIV/AIDS pandemic is probably the red ribbon which has come to stand for people’s awareness of the virus. It was originally designed in New York City in 1991 by Visual AIDS, a group of artists and art professionals. Inspired by yellow ribbons worn by US-Americans during the Gulf War in support of the country’s soldiers (Engle 2000; Sokolowski 1994, 68), the artists adopted the idea and created the red ribbon to further their own objectives, namely to raise people’s awareness of HIV/AIDS and to express solidarity with those living with the virus. Thomas Sokolowski, one of the members of Visual AIDS, enumerates the advantages of the ribbon when he states that it is ‘an inexpensive, easily produced, user1

For further differentiation, Link creates sub-categories of the symbol, depending on the medium in which the pictura is presented (Link 1974, 170-3). In keeping with my study’s broad understanding of text, this chapter is concerned with so-called visual-literary symbols in which the pictura is visual or iconic, while the subscriptio is expressed verbally.

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friendly signifier to respond to the AIDS crisis’ (Sokolowski 1994, 68). Since Visual AIDS did not copyright the symbol (Gott 1994, 32), the ribbon can be produced and worn by many people around the world. In his article about Australian art on HIV/AIDS, Ted Gott discusses the symbolic meaning of the red ribbon and quotes from a text stapled to ribbons sold in Canberra. Why a Red Ribbon? They don’t protect anyone or provide a cure from AIDS and discrimination but they are a gesture. This ribbon is a visible sign of awareness but it is not that simple. The ribbon can mean anything from I’m angry to I sympathise, it covers the spectrum of emotions surrounding AIDS. The colour red is not only for blood but for anger, passion and love as well. The inverted ‘V’ because there has been no victory. (ibid.)

Both the explanation as such and the fact that the items are sold with this information highlight the symbol’s complexity and fuzziness. Although a motivated sign, its subscriptio, its symbolic meaning(s), its intention and significance are not simply ‘given’ but have to be negotiated. For example, the red ribbon does not necessarily indicate that the wearer is personally infected with or affected by HIV/AIDS; instead, the symbol is also present among ‘legions of red ribbon wearing “well wishers” who crowd the Academy Awards or any major AIDS fund-raising occasion’ (ibid., 24). The choice of words in this quote indicates that the symbol has not met with approval by activists, particularly by many from gay communities who consider it ‘a sop for middle-class do-gooders’ (Sokolowski 1994, 69). This is a downside of its success: with rising popularisation and commercialisation the red ribbon is criticised for having lost influence. In line with this criticism, some activists have coined the slogan ‘red ribbons are not enough’ (Smith & Gruenfeld 2001, 640) in order to point out that all too often the ribbon is more a ‘politically correct fashion accessory than a meaningful social or political statement’ (ibid.). Although Sokolowski can follow such objections, he does not share them. Instead, he argues that wearing the red ribbon in public, especially in rural areas, can be ‘as much a heroic act as any street demonstration in New York City’ (Sokolowski 1994, 69). Thus, Sokolowski reads the ribbon as a symbol that continues to raise awareness of the pandemic and that indicates people’s support for and solidarity with those living with HIV/AIDS. Adjusting the Red Ribbon to the South African Epidemic As in many other societies around the world, the symbol of the red ribbon figures prominently in South Africa, where it has also been modified to address the local characteristics of the epidemic. The Nelson Mandela/HSRC Study of HIV/AIDS (Shisana et al. 2002) notes that the majority of South Africans are familiar with the symbol, to a large extent

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regardless of their living conditions.2 Exposure to the red ribbon ranges from 84.9% in urban formal surroundings and 78.8% in urban informal settings to 70.3% in rural communities (ibid., 94-5). Although urban informal and rural areas are less resourced than urban formal ones, these economic differences hardly manifest themselves in this context because the red ribbon is easily and cheaply produced, allowing for a wide distribution across social classes. In the HSRC study, the red ribbon is classified as one means of providing HIV/AIDS information. Compared to other formats such as posters, leaflets, murals, AIDS plays and community meetings, the red ribbon achieves the highest level of recognition (ibid.). Focussing on the general availability of HIV/AIDS information, the empirical survey does not investigate different ways of reading the red ribbon but accepts it as one instrument of addressing the infection. However, it is necessary to analyse the signifying process in which elements of the pictura are transferred onto the subscriptio in order to explore the symbol’s ambiguity. In South Africa, the symbol has appeared in many different forms, some of which can be read as an official and public recognition of the virus. On the occasion of the International AIDS Conference in Durban in 2000, the city hall was ‘tied’ with a red ribbon 500 metres long and weighing 700 kilos (Roberts 2001, 38).3 Its enormous size highlights the major impact HIV/AIDS has had on South Africa. Moreover, the symbol’s encircling of the city hall, rather than just any building in Durban, suggests that city council and government officials recognised the epidemic as a key concern. The project also involved the general population: different groups and organisations at grassroots level, such as the Sinethemba Street Shelter of Durban or the Technikon Natal Arts Foundation Course, contributed to this project by painting panels which were subsequently sewn into one large red ribbon (ibid., 39). As a public cultural activity, this red ribbon artwork conveyed its messages about HIV/AIDS awareness to both international Durban AIDS conference guests and the local population and thus encouraged an open response to the epidemic. With the telling title A Red Ribbon Around My House, a short documentary film in the Steps for the Future series – a collection of films about HIV/AIDS-related stories in southern Africa, created collaboratively by southern African and international film makers, people living with HIV/AIDS and activist organisations – works with 2

3

Commissioned by the former President Nelson Mandela, the study is a pioneering nationwide and community-based survey of the demographic and cultural dimensions of the HIV/AIDS epidemic in South Africa. It was the aim of the study to estimate the prevalence of HIV by sex, race, age, education and locality (differentiating between four location types, namely urban formal, urban informal, rural formal and rural informal). The scientists also explored public awareness and perception of the epidemic as well as the interventionist impact of AIDS education programmes. A similar event was staged at Iziko South African National Gallery in Cape Town in 1996 when Wola Nani ‘wrapped’ the museum with a gigantic red ribbon on the occasion of World AIDS Day (Kauffman & Martin 2003, 5).

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4.1 Pinki with a Red Coat and a Red Ribbon. A Red Ribbon Around My House, 2001. (By permission of STEPS Southern Africa)

4.2 Title in Red Letters Superimposed on Township Scene. A Red Ribbon Around My House, 2001. (By permission of STEPS Southern Africa)

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a similar idea. Comparable to the ribbon around the Durban city hall, the HIV-positive protagonist Pinki dreams of a red ribbon encircling her home. In the film’s final scene she says in a voice-over, ‘I want a red ribbon around my house the day I die [...] to make people aware that there is AIDS and Pinki was really right all the time, all the years she used to talk about HIV/AIDS.’ Shot in a shebeen, a kind of local pub in a township, it becomes clear that she does not feel near death as she enjoys herself with family and friends. Yet via the voice-over her wish is narrated. After her death, an oversized ribbon is meant to continue Pinki’s outspoken response to the virus and to educate her community about HIV/AIDS. To make the ribbon visible in the evening, she wants it to be illuminated – a plan that can also be read metaphorically. Drawing on the concepts of ‘light v. darkness’, the red ribbon functions as a means of ‘enlightenment’: with the help of the symbol Pinki brings ‘light’ to the community by raising awareness and possibly tolerance among her neighbours. Speaking out publicly about HIV/AIDS and her infection, Pinki communicates with miners, students, church members and people who call in on a radio talk show. She uses her voice to address the issue and she displays the symbol of the red ribbon, which she wears as a lapel pin in public (see Illustration 4.1), for example in a minibus or when walking through the streets. Moreover, Pinki is frequently depicted wearing a red coat, which perhaps does not immediately signify HIV/AIDS but the context and colour-coding suggest a connection. The bright red colour is introduced in the opening sequence when the title is superimposed on a township street scene (see Illustration 4.2). In a tracking shot, the camera moves along with the minibus in which Pinki rides. Houses made of corrugated iron, at times partly obstructed from view by tall grass-like plants, are visible in the background. Written in red capital letters and including the phrase ‘red ribbon’, the superimposed title serves as a visual reference to the film’s subject matter. Since Pinki is introduced as the film’s protagonist in the establishing shot prior to the superimposition of the title, the first-person possessive pronoun ‘my’ used in the title can be attributed to her. In a figurative sense, Pinki has already placed a red ribbon around her house. Her daughter Ntombi, who disagrees with her mother’s open response to HIV/AIDS, makes it all too clear that she considers their family to stand out from the community due to her mother’s public disclosure. Sympathising with her father, Ntombi is embarrassed by her mother’s outspokenness. She fears that her mother’s disclosure might trigger intimate questions and prejudices leading to the stigmatisation of the whole family and discrimination. In a futile attempt to keep her mother’s HIV status secret, Ntombi explains her mother’s sickness in terms of cancer because it is less stigmatised than HIV/AIDS. In so doing, she does not lie but offers only limited insight into Pinki’s medical

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4.3 Brett Murray, AIDS Memorial in Company’s Garden in Cape Town, 1994. (Photograph by Ellen Grünkemeier, 2007)

condition. Suffering from bone marrow cancer, Pinki has regularly received blood transfusions, thereby contracting the virus. All in all, AIDS education here includes and goes beyond family and community because the film viewer is also drawn into this process. Frequently filmed in medium close-ups, as is characteristic of interviews in the documentary genre (Bordwell & Thompson 2004, 128-46), Pinki and Ntombi seem to address the audience by looking directly at the camera. In bringing together their contrasting attitudes and comments, the film does not offer advice on how to respond to HIV/AIDS but instead underscores the complexity of the situation faced by those who are – in one way or another – affected by the virus. The South African artist Brett Murray already made use of the symbol in 1994 when he created an AIDS memorial (see Illustration 4.3). Placed in Company’s Garden, a public park in central Cape Town, his memorial serves as public art. Similar to the ribbon around the Durban city hall, the memorial’s location and accessibility imply that HIV/AIDS is a central issue relevant to everyone, regardless of social

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categories of difference. Red ribbon signs attached to street lamps in Company’s Garden repeat and support this message, suggesting that HIV/AIDS awareness is part of the city council’s agenda. In Brett Murray’s piece, the red ribbon identifies his work as an AIDS memorial; there are no other verbal or visual representations of the virus. With its design, shape and material, the memorial is reminiscent of a classic gravestone, locating HIV/AIDS in the context of death, mortality and commemoration. Because of its colour and slightly protruding position the metal red ribbon stands out from the white marble, arousing the viewer’s attention. Still, the stone does not serve as a headstone but rather as a memorial. Since it does not feature a name, date or inscription, it does not refer to a particular individual. As an AIDS memorial, it suggests that HIV/AIDS awareness is timeless and refers to all those who have died of AIDS-related diseases and those who have been affected by their deaths. With antiretroviral therapy, HIV/AIDS need not be fatal anymore; but in 1994, when the memorial was created, effective treatment was not yet available. Not until 1995 was the highly active antiretroviral therapy (HAART) shown to be effective; not until 1997 was the first HAART programme introduced in Africa, in Kampala, Uganda (Nattrass 2007, 17); not until 2004 was a public rollout of HAART initiated in South Africa after much political controversy (see Chapter 3). Drawing on these cornerstones in medical history and politics, it becomes obvious that the meanings of this AIDS memorial are neither ‘fixed’ nor ‘universal’, they shift and change. The memorial can serve to commemorate the dead and to express solidarity with those who are affected by their deaths. It can also warn people that HIV/AIDS should be taken seriously; after all, the infection is a chronic condition which has to be managed medically and for which no cure has been found. Furthermore, the memorial can also be read in terms of the availability of treatment: death need not be a direct consequence of HIV/AIDS in times of antiretroviral therapy, yet only on condition that everyone who is in need of treatment has access to it. Although substantial progress has been made in the provision of antiretrovirals since the public rollout in 2004, a significant need for therapy is still unmet and access to treatment is limited and unequal. Availability varies greatly between the provinces, ranging from low levels of coverage (between 25% and 32%) in Free State, Eastern Cape and Mpumalanga to over 70% in Western Cape in 2008 (Adam & Johnson 2009, 665). The statistics can help to analyse and evaluate the possible connotations of the symbol; yet they cannot provide one definite reading or ‘solution’. The red ribbon cannot be reduced to just one message as polyvalence is inherent in its symbolic structure. Not only is the symbol shaped by ambiguity but, in fact, by the statistics as well. The statistical figures presented here are based on the criteria of the

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South African Department of Health (DOH), according to which people living with HIV/AIDS are eligible for antiretroviral therapy once their CD4+ count drops below 200.4 However, the Southern African HIV Clinicians Society (SAHIVSOC), an influential professional HIV interest group affiliated with the South African Medical Association (SAMA), recommends an earlier intervention as the best standard of healthcare: at a CD4+ count below 350, antiretroviral therapy should be commenced (SAHIVSOC 2008, 21) because ‘patients with profound immunosuppression are at significant risk of opportunistic illnesses, and should be rapidly assessed and initiated as soon as adherence is assured’ (ibid., 18-19). The recommendations have had an impact on statistics about national antiretroviral coverage. For example, on the basis of these DOH criteria treatment coverage was estimated to be 40% among infected adults who had a CD4+ count under 200 in South Africa in 2008. By SAHIVSOC guidelines, however, more people living with HIV/AIDS would classify for treatment and thus national antiretroviral coverage would only amount to about 22% of those with a level below 350. These figures show how estimates of coverage change considerably, depending on the criteria used. Although appealing to standards of objectivity, statistics are not self-evident but have to be evaluated, for example, by comparing these different criteria to the HIV/AIDS treatment guidelines of the World Health Organisation (WHO). In 2006, the WHO recommended that people living with HIV/AIDS commence treatment when their CD4+ count falls to 200 or lower, at which point symptoms of AIDS typically begin to show (WHO 2009). Latest scientific findings, however, have proven that an earlier intervention with antiretrovirals reduces opportunistic diseases and death (ibid.). In view of this evidence, WHO updated their treatment recommendations in 2009: HIV-positive people with a CD4+ count of below 350 are now advised to start therapy, regardless of their symptoms (ibid.). Bearing in mind this contextualisation, it becomes clear that the standards of treatment applied by the South African Department of Health and the Southern African HIV Clinicians Society are informed by different theoretical frameworks and political agendas. The various criteria have a major effect on how the data are perceived. While the SAHIVSOC figures highlight the low availability and high unmet need of treatment, the DOH figures characterise the rollout of antiretrovirals as a success. The South African government under Jacob Zuma responded to the latest scientific research results and updated its criteria of eligibility accordingly. In August 2011, the current Minister of Health, Aaron Motsoaledi, announced that all South Africans with 4

Counting CD4+ cells, a particular kind of white blood cells that make up a central component of the body’s defence system, is a means to ‘measure’ immune system strength. People living with HIV/ AIDS show a decreased number of these cells. The absolute figures describe the number of CD4+ cells per microlitre.

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a CD4+ count of below 350 qualify for antiretroviral therapy (South African Press Association 2011). A significantly larger number of people living with HIV/AIDS is therefore eligible for treatment and it remains to be seen what effects the implementation of these plans will have on the statistics of medical coverage with antiretrovirals. Coming back to Murray’s AIDS memorial, the red ribbon features so prominently that this work can also be understood as an encouragement to speak out about the virus. Again, statistics and context information can be used to investigate this decoding of the symbol. Among African countries, South Africa has a well-functioning death notification system but AIDS-related deaths are seldom documented as such (UNAIDS 2008, 47) for fear of stigmatisation and discrimination. Misclassification of deaths can have major consequences as it underestimates the impact and relevance of the epidemic in South Africa and thus plays into the hands of AIDS denialists. To provide consistent and more exact information on death rates, researchers in studies of mortality have tried to determine what other listed causes of death are likely to include disguised HIV/ AIDS-related deaths (Anderson & Phillips 2006, 2). This procedure, however, can be – and has been – criticised for misrepresenting the situation since the findings are based on assumption and interpretation rather than on calculation. As discussed previously, the cause-of-death statistics caused a major political controversy in August 2001 when Thabo Mbeki questioned the estimates and interpretations that named HIV/AIDS as a leading cause of death in South Africa. The reasons for and consequences of disguising AIDS-related deaths make apparent that the AIDS memorial which associates the virus with death is not obsolete in times of antiretroviral therapy. The deaths of public figures like Parks Mankahlana and Peter Mokaba have generated widespread speculation, indicating the extent to which the infection has been silenced as a possible or even likely cause of death. As long as stigma and shame prevail, as long as HIV/AIDS is not stated as the actual cause of death, as long as there is an unmet need for antiretroviral treatment, Brett Murray’s AIDS memorial is not outdated but interwoven with the South African epidemic. Still, placing the red ribbon in the context of death, mortality and commemoration is but one form of representing HIV/AIDS through the internationally recognised symbol. In the photograph ‘Baby in Red’ (2000) depicting a naked newborn wrapped in a red ribbon, Penny Siopis takes issue with the impact HIV/ AIDS has on infants (see Illustration 4.4). Both the baby’s young age and nakedness underscore its innocence, vulnerability and dependence on others. Via the red ribbon, the baby is associated with the virus. Yet, the precise nature of this connection is ambiguous because the elements of the pictura can be mapped onto different sets of signifieds in the subscriptio. The baby itself might be HIV-positive, or it might be indirectly affected by HIV/AIDS if its mother and/or father died of

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4.4 Penny Siopis, Baby in Red, 2000. 100cm x 80cm. (By permission of Penny Siopis)

AIDS and it grows up as an orphan. The red ribbon wrapped around the baby can also be read as an indicator of the high risk of mother-to-child transmission. These different readings correspond to statistics which show that the epidemic has had a serious impact on children in South Africa. Defining AIDS orphans as children and youth up to seventeen years old who have lost their mother and/or father to AIDS, UNAIDS estimates that about 1.9 million children lived as AIDS orphans in South Africa in 2009, compared to about 580,000 AIDS orphans in 2001 (UNAIDS 2010, 186). It is estimated that 330,000 South African children (up to fourteen years old) are HIV-positive (ibid., 182). Most children are infected through mother-to-child transmission which can occur during pregnancy, labour, delivery or breast-feeding (DOH 2009, 23). If no medical precaution is taken, the risk of maternal HIV transmission is estimated to approach 30% (ibid.). Under optimal treatment conditions, when women receive a short-term antiretroviral prophylaxis, have a caesarean section and forsake breast-feeding, the risk of transmission can be lowered to less than 2% (Herold 2009, 853). In South Africa, the launch of a national mother-to-child transmission prevention (MTCTP) programme caused political and legal dispute.5 The antiretroviral drug Zidovudine had been proven to be 5

Mark Heywood, Head of the AIDS Law Project at the University of the Witwatersrand and a leading member of TAC, provides a detailed and balanced account of this controversy by contextualising the court case in contemporary political, legal and social debates (Heywood 2003). Augmenting

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a safe and effective means to reduce the risk of MTCT. The South African government decided to opt for Nevirapine instead, because this drug promised a similar efficacy but less complicated drug regimen at lower costs (Heywood 2003, 285-90). Initially, the Minister of Health and the nine provincial ministers planned to implement two pilot sites in each province testing Nevirapine, ‘both to establish the operational requirements of a nationwide programme but also to assess the effectiveness of the intervention in a real life situation’ (DOH 2008, 24). In August 2001, after the formal registration of the drug in April 2001, together with the Children’s Rights Centre in Durban and the paediatricians’ organisation Save Our Babies, the Treatment Action Campaign (TAC) launched a legal action against the government to make Nevirapine available for MTCTP through the public sector, rather than at some selected sites only (Coovadia 2009, 67-73; Heywood 2003, 290-9). The government had concerns about a national rollout of Nevirapine (and antiretrovirals in general), arguing that the costs were too high and that the efficacy and safety of the drug were not sufficiently proven (Heywood 2003, 296). In July 2002, the Constitutional Court ruled in favour of TAC on grounds that this policy does not meet the government’s constitutional obligations: there is no evidence doubting the safety of the drug; the risk of developing resistance does not compare to the infected children’s suffering or death; and the policy discriminates against the poor, who cannot afford to pay for treatment in order to obtain Nevirapine outside of the pilot sites (ibid., 278, 311). The Department of Health was ordered to make the drug available at public health care facilities without further delay (DOH 2009, 24; Heywood 2003, 312). In response to this judgement, government implemented a national MTCTP programme which has made significant progress in recent years. Between 2004 and 2006, access to prevention services increased from about 15% to 57% (UNAIDS 2008, 124) or, in other words, almost 60% of pregnant women living with HIV/AIDS received Nevirapine (DOH 2009, 13, 69). Despite this expansion, there is still a high need for prophylaxis; mother-to-child transmission still accounts for a substantial number of new HIV infections in sub-Saharan Africa (UNAIDS 2009, 35). As the photo ‘Baby in Red’ connects the red ribbon with a newborn baby, it can be read in this context of mother-to-child transmission and even as a critique of the government’s slow and initially unconstitutional response. According to the South African Constitution (1996), the state is under an obligation to promote access to health care, food, water and social security. TAC’s legal representatives argued in court that this constitutional right could be extended to include antiretroviral treatment (Robins & von Lieres 2004, 579). Penny Siopis’s photo dates (contd) Heywood’s account, Ashraf Coovadia, one of the founders of the campaign Save Our Babies, provides his perspective as a paediatrician (Coovadia 2009).

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from 2000, prior to the court case and the introduction of a national MTCTP programme in South Africa, which might suggest that this meaning is outdated. Still, even after the rollout of the prevention programme, the picture can be read along these lines as a reminder of the human rights debate during 2001 and 2002. Moreover, it calls attention to the yet unmet need for MTCTP. Like Brett Murray’s AIDS memorial, the photo does not lose significance in the age of antiretroviral therapy. Both are artworks that open up various possibilities of interpretation and contextualisation; and the red ribbon plays into this ambiguity. In Siopis’s photograph, the infant lies on its back, its arms are encased by the ribbon, so that it is prevented from moving or defending itself. Since much of the baby’s face and its individual features are concealed, the photo does not refer to a particular child but to South African infants in general who are infected with or somehow affected by HIV/ AIDS. Using the generic term ‘baby’ rather than a personal name, the photograph’s title ‘Baby in Red’ supports this generalisation. As a white baby is depicted, one could argue that the infant does not stand for the majority of non-white children in South Africa. Still, the portrayal can be read differently. Focussing on a white child and its connections with HIV/AIDS, the photo calls into question the common myth that whites do not contract the virus. Furthermore, the infant’s mouth in particular is covered by the ribbon, making the baby voiceless or possibly even suffocating it, so that the baby cannot call attention to its predicament. However, with this photograph the artist addresses the unspeakable and renders visible the HIV/AIDS epidemic. Measuring 100cm by 80cm, the photo makes plenty of room for the issue. Both through the large size and the baby’s engaging gaze, spectators become aware of and respond to the photo. As the baby looks directly at them, the viewers are drawn into the picture; they are invited to reflect both on the HIV/ AIDS epidemic in general and its impact on children in particular as well as on the function of visual arts in engaging with socio-political matters. The photograph’s visibility and outreach were broadened while it was on display in the exhibition ‘AidsArt / South Africa’, curated by Kyle Kauffman and Marilyn Martin and hosted at Iziko South African National Gallery in Cape Town, from November 2003 to February 2004. In addition to some previously existing pieces, most works displayed in the exhibition were commissioned from artists who had either worked on HIV/AIDS or who had engaged with social and political issues through the visual arts (Kauffman & Martin 2003, 6). As this contextualisation all too clearly shows, few South African artists confronted the issue in the early years of the epidemic. However, the National Gallery has played a major role in tackling the issue because the museum started to engage with HIV/AIDS in the 1990s (Allen 2009; Kauffman & Martin 2003, 5-9) when it hosted photographic exhibitions and put on display a memorial quilt produced in Cape Town as well as

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when it was wrapped in a giant red ribbon on International AIDS Day in 1996. Commenting on the connection between the baby and the red ribbon wrapping it, Penny Siopis states, ‘In this photograph [...] I wanted to emphatically connect the universal AIDS ribbon to the body of a baby so that the ribbon becomes less symbol, motif, logo than a representation of flesh and blood’ (Kauffman & Martin 2003, 26). The curators read the red ribbon along similar lines. ‘The wrapping is perhaps also meant to link more closely the inanimate object to the human beings that it is meant to represent. It reminds us also that wearing a red ribbon can be empty rhetoric if action is missing’ (ibid., 8). Functioning as a universal symbol, as both quotes emphasise and indirectly criticise, the red ribbon can come across as an abstract, eventually even naturalised and empty sign, devoid of meaning and emotion. As criticised by USAmerican activists as well, people have got into the habit of accepting and wearing the red ribbon without reflecting on its messages. A backlash has developed against the use of the symbol. In her work ‘Baby in Red’, however, Penny Siopis goes against this process in that she alienates the symbol. Using a red ribbon, not in its common form as an ‘inverted V’ but wrapped around a human body, the artist literally links the symbol with its implied meanings. Through this strategy of defamiliarisation, viewers are roused from their apathy; they are reminded of the symbolic value. The uncommon use of the red ribbon in the photo calls attention to the signifying process in which signifiers of the pictura are mapped onto corresponding elements of the subscriptio. An adult could also have served as what Siopis called in her comment a ‘representation of flesh and blood’; yet the portrayal of a baby, connoted as innocent and vulnerable, is more effective in this context. Modifying the Red Ribbon in South African Art Forms The internationally established symbol can also be modified with the help of materials and craftsmanship in order to address the local specificities of the South African epidemic. The red ribbon has been incorporated in art forms such as telephone-wire basketry and beadwork, thereby marking the products as ‘South African’. Beadwork has been a prominent feature of southern African cultures for centuries. For the most part, it has been studied by archaeologists, historians and anthropologists who have used it as a means to research the local culture and history. Beadwork, however, has hardly received any attention as an aesthetic product (Brottem & Lang 1973, 8). This lack of acknowledgement is rooted in a colonial and racist mindset according to which, until recently, ‘art’ was understood to signify products created by whites, whereas ‘craft’ was associated with blacks (Roberts 2001, 93). Implying a hierarchy in quality and creativity, this dichotomy has increasingly been contested in South Africa. By now, Zulu beadwork

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is recognised as an elaborate and creative art form, in fact, amongst the finest in all of Africa (Brottem & Lang 1973, 8). Its artisanal appeal lies in both its technical excellence and its artistic quality. Functioning as a complex semiotic system, beads signify the wearer’s social status, gender, age and marital status. To be able to ‘read’ the ‘message’, it is necessary to know the regional colour code and patterns. Modifications within the basic scheme serve to indicate individuality and changes in fashion (Jolles 1993, 47, 52). While the production of beaded jewellery is almost exclusively a female task, the adornment itself is donned both by boys and girls, men and women. Although bead supplies have increased, especially since the 1950s and 1960s, beadwork is still too expensive to be worn every day, which is why beaded body decoration has mainly been used on special occasions, for secular events such as coming-of-age ceremonies, family gatherings or marriages (ibid., 42; van Wyk 2003, 21). Despite the high costs, the ready availability of material has made beadwork a ‘remarkably democratic vehicle for aesthetic expression, available to everyone rather than just to leaders’ (van Wyk 2003, 22). It is this rich Zulu beadwork tradition that artists have drawn on in their AIDS awareness activities. In anticipation of the International AIDS Conference in Durban, artists, educators, museum staff and activists organised various public cultural activities. In addition to its exhibition on HIV/AIDS, the Durban Art Gallery, for example, organised HIV/AIDS awareness workshops, one of which focussed on Zulu beadwork (Roberts 2001, 38). Working on traditional designs and incorporating HIV/AIDS awareness messages into the jewellery, women artists created beaded ribbons which could be pinned to lapels, just like the ‘original’ red ribbon. In their shape and style the pins are reminiscent of Zulu ‘love letters’, beaded embellishment traditionally produced by Zulu girls for their lovers as a symbol of their affection. As with other pieces of beadwork, the use of colours and patterns in these ‘letters’ conveys a particular message, indicating, for example, the status of the relationship (van Wyk 2003, 24), progressing from love to courtship. This interconnection with love letters adds meaning; the red ribbon pins do not only symbolise HIV/AIDS awareness but also connote human relationships, affection, love and passion. One could argue that the spectrum of feelings surrounding HIV/AIDS is symbolised by the colour red anyway, regardless of the cultural implications of the red ribbon. In the case of the beaded pins, however, the emotional dimension is stressed due to the symbolic value attached to love letters in Zulu culture. In the beaded version, the ‘original’ red ribbon is still visible and can be understood as a symbol of HIV/AIDS. Standing in the tradition of Zulu beadwork, however, it is modified and acquires new meaning. The use of beads can be said to shape the signifying process. The virus is located in the historically and culturally specific

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Zulu context, addressing the impact of the virus on Zulu society and, by extension, on the South African population in general. In addition to the red ribbon, some of the beaded pins include the new flag of South Africa as well, thus spelling out the particular national context. The South African postal service produced an HIV/AIDS stamp in 1999, one very similar to the US-American version released in 1993 (Smith & Gruenfeld 2001, 640). Featuring a beadwork red ribbon pin, a locally specific variant of the international symbol, the stamp can be said to take issue with the South African epidemic. The booklet in which the stamps are sold supports this reading. It provides further information and advertises the national AIDS helpline, a confidential telephone service. It also includes a quote of President Nelson Mandela which indicates that the ANC-government backs this attempt at raising cultural awareness: ‘The vision which fuelled our struggle for freedom; the deployment of energies and resources; the unity and commitment to common goals – all these are needed if we are to bring AIDS under control. Let us join hands in a caring partnership for health and prosperity as we enter the new millennium.’ Drawing on their shared history of the struggle against apartheid, Mandela addresses South African citizens and calls for HIV/AIDS awareness and activism. Due to these different elements, the stamp can be understood as an official recognition of the impact the virus has had on South Africa. In addition to Zulu beadwork, a workshop on telephone-wire basketry was also held in Durban. Artists were encouraged to address HIV/AIDS through this art form and some of their pieces were exhibited at the local gallery during the conference (Roberts 2001, 39). With its beginnings in the 1950s and enjoying increasing popularity since the 1970s, telephone-wire basketry is a fairly recent phenomenon but stands in the long and rich tradition of weaving and wire-working in southern Africa (Mikula 2005, 15; Roberts 2001, 40). It has been shaped by the production and function of imbenge (or izimbenge in the plural), a beer pot lid traditionally woven of grass and palm leaf, allowing the beer to breathe but preventing insects from falling into the drink (Mikula 2005, 16). Among the Nguni peoples beer, drunk in honour of the ancestors, is of special significance. In keeping with its status, beer is served in the most beautiful clay pots, covered with exquisite lids, usually decorated by women with beadwork in the colours of the clan (ibid., 19). With the ready availability of plastic containers, the production of baskets and clay pots started to vanish, with the exception of the imbenge, which was still frequently produced in the homesteads. Consequently, the weaving skills survived and could later be resurrected by artists for telephone-wire basketry (ibid.). Whereas beadwork is produced almost exclusively by women, basket weaving has increasingly cut across the allocation of tasks by gender since both men and women participate in the manufacture of baskets. Traditionally, gender roles used to shape

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the production and use of particular objects: while working with grass, leather, wood and metal were considered part of the male domain, it was the women’s task to work with clay, to produce pots and to decorate items with beadwork (ibid., 20; Nel 2005, 8). Men used to manufacture the copper-wire baskets while women decorated them with beads, taking into consideration local colour codes. Particularly under the influence of the migrant labour system, this division of labour could not be upheld (Mikula 2005, 21) so that today the gender barrier in the production of telephone-wire baskets has fallen and both male and female artists work in this field (Fick-Jordaan 2005, 27; Mikula 2005, 23; Nel 2005, 8; Roberts 2001, 42-3). For their telephone-wire baskets, the weavers use what they call ‘scoobie wire’, strands of plastic-coated fine copper wire, each of a different colour, that make up a telephone cable. Originally intended as a means to enable telecommunication engineers to identify and service particular telephone lines, the basket manufacturers can equally benefit from the variety of colours, usually white, yellow, red, pink, purple, blue, green, brown, grey and black (Mikula 2005, 15). Telephone-wire weaving has indeed become such an important industry that factories now produce wire specifically for the artists (Roberts 2001, 42). Using coloured wire, the artists can create intricate decorative patterns, images and letters. Therefore, it is no longer necessary to decorate the baskets with beads in order to make them special (Mikula 2005, 21). As with Zulu beadwork, westerners downgraded basketry and considered the objects as ‘everyday cultural artefacts’ rather than ‘art’ which is why the items were of no particular interest to them. This colonial attitude has changed and given way to an appreciation of the objects (Nel 2005, 9). Realising the economic potential of the new market and art industry, the South African government has endorsed this growing interest in South African art products by providing financial support for training institutions (Fick-Jordaan 2005, 27). The classification as art has had an impact on the form, function and aesthetics of wire-objects. Changes in the production of the imbenge mirror this shift. ‘No longer the traditional small bowl, of which the convex, upper surface was the most important and most finely decorated, the contemporary izimbenge have wide, flared bowls and flattened platter-like forms, with decorated interior, concave surfaces’ (Nel 2005, 9). At the Bartel Arts Trust (BAT) Centre and Shop in Durban, an artdevelopment and marketing project founded in 1994, the artists have been given opportunities to display and sell their products. Curated by Marisa Fick-Jordaan in 1996, the first exhibition of telephone-wire baskets at the BAT Centre met with wide critical acclaim and generated a larger audience (Fick-Jordaan 2005, 27). Catering to the demands of the market and enabling the artists to make a living, Marisa Fick-Jordaan has encouraged the weavers to experiment with design, shape, size and

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Disclaimer: Some images in the printed version of this book are not available for inclusion in the eBook. To view the image on this page please refer to the printed version of this book.

4.5 Mboniseni Khanyile, Imbenge ‘AIDS Kills’, 2005. Diameter 39cm.

4.6 Nombuso Nkwanyana, Imbenge ‘HIV AIDS IS A KILLER’, 2001. Diameter 24cm. Private collection. Photograph by Dan Cole. (By permission of Allen F. Roberts)

colour in order to develop an individual style and to create innovative items of high quality (ibid., 26-9). These production and marketing processes provide contexts against which written and iconographic representations of HIV/AIDS in telephone-wire baskets can be read. The imbenge ‘AIDS Kills’ (39 cm in diameter) by Mboniseni Khanyile signifies HIV/AIDS both verbally and visually in that it incorporates AIDS education slogans and the red ribbon (see Illustration 4.5). HIV/ AIDS serves as a central issue, both literally and figuratively: in the centre of the imbenge, the red ribbon is shown four times, thus putting emphasis on the symbol and its meanings. Between the ribbons there are four red crosses that connote AIDS-related deaths, especially if read in connection with the warning conveyed in the title ‘AIDS Kills’. The core consists of a large red plus sign which, in this context, might stand for ‘HIV+’ or ‘HIV-positive’. Yet, its shape differs only marginally from the crosses which is why its symbolic value is ambiguous. Moreover, the piece depicts four people standing next to a house who are not directly connected with the red ribbons because the orange background of the middle section sets them apart from the imbenge’s centre, coloured in green. Depicted in black, white and violet, they are not linked with the ribbons via the use of the red colour, either. Yet, with four figures shown, they match the number of red ribbons and crosses. Therefore, it is open to interpretation if and in what ways the figures are linked to the virus. The imbenge also features some medical facilities that are grouped together and characterised by red crosses on

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a white background. A man standing next to the main building can be identified as a doctor because of his white coat, which clearly differs from the other people’s clothes. Although the house and four people as well as the medical facilities and doctor are placed on the same level and background, their connection is not specified. All in all, the imbenge with its different sections, AIDS education phrases, red ribbons and crosses, houses and people opens up a range of meanings because the signifiers of the pictura can be mapped onto different sets of signifieds in the subscriptio. In the imbenge by Nombuso Nkwanyana the virus is also addressed verbally and visually (see Illustration 4.6). The slogan ‘HIV AIDS IS A KILLER’ is spelt out in bold capital letters. Written in white on blue, the phrase stands out from the background and thus arouses attention. In a symmetric setup, the imbenge shows two houses facing each other with red ribbons on the white roofs. The ribbons melt into the red outer rim of the imbenge suggesting that the impact of HIV/ AIDS is not exclusive to these homes and communities but is a much broader social issue. Two further red ribbons are placed in the spaces between the houses, thus underscoring the ubiquity of the virus and its effects. Echoing each other, the ribbons also contribute to the visual balance of the design. Unlike Mboniseni Khanyile’s work, however, this imbenge does not feature any people, with the effect that its symbolic representation of HIV/AIDS is detached from a personal level. Moreover, the position of the symbols seems to suggest that HIV/AIDS comes from the outside and closes in on the houses and communities. This representation can be read in terms of an influential myth about the origin of the virus, according to which HIV/AIDS comes ‘from the outside’ (see Chapter 5). While the red ribbons are placed in the very centre of Khanyile’s imbenge, the core of this plate is coloured white, suggesting unaffectedness by the virus. Compared to the ‘original’ ribbon, its modified versions incorporated in South African beadwork and telephone-wire basketry are neither as cheap nor as easy to produce. Paying tribute to the skilfulness and creativity associated with these art forms, the pieces are mostly produced for sale, sold, for example, in the African Art Centre in Durban and in museums and other shops around the country. As articles of trade, they are available to those who can afford to buy them, be they locals, visitors or art collectors. Due to increasing commodification, these South African adaptations of the red ribbon are faced with the same criticism as the ‘original’ in the United States. Turned into gifts, souvenirs, collectables or fashion accessories, the pins and izimbenge can be said to lose their status as significant political statements. Yet by including visual and symbolic references to HIV/AIDS, they continue to raise awareness and, after all, money. As Allen Roberts, one of the editors of the academic journal African Arts, writes, many people

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involved in the South African art business have sponsored HIV/AIDSawareness activities since the 1990s (Roberts 2001, 38). Moreover, the profits from the sale of the bead ribbons, telephone-wire baskets and other products can also go towards museums, artists, HIV/AIDS education and art projects. The ‘H.I.V. POSITIVE’ T-Shirt of the Treatment Action Campaign Compared to the red ribbon, which is certainly a global phenomenon despite its regional variations, there are symbols which are more firmly rooted in the South African locale; t-shirts designed by the Treatment Action Campaign are one of the most prominent examples. At about the same time that the Treatment Action Campaign was launched as a South African AIDS activist organisation in December 1998, Gugu Dlamini, a 36-year-old South African HIV-positive woman from KwaMashu near Durban, disclosed her HIV-positive status in public. Shortly afterwards, some of her neighbours turned on her and stoned and stabbed her to death for shaming the community (Cameron 2005a, 53-4; Power 2003, 59). Gugu Dlamini has come to represent the stigmatisation of HIV/ AIDS. As a reaction to this crime, TAC had t-shirts printed: on the front, the shirts featured the phrase ‘H.I.V. POSITIVE’ in large capital letters, on the back a photo of Dlamini and the slogan ‘Never Again’ (Nattrass 2007, 45; Power 2003, 59). Subsequently, different versions have been produced, addressing particular incidents and issues. Repeating its ‘H.I.V. POSITIVE’ slogan, the t-shirt has long become a trademark of TAC and a symbol widely recognised in South Africa. Like the red ribbon, it opens up space for ambiguous meanings that have to be analysed and negotiated; the t-shirt can serve as a visual means of speaking out about HIV/AIDS, of expressing solidarity, of taking a stand for AIDS awareness, prevention and education. Unlike the red ribbon, however, it has not been established internationally to address the global pandemic but, closely linked with the activities of the Treatment Action Campaign, it implies the South African HIV/AIDS epidemic. Commenting on the t-shirts, Zackie Achmat, a co-founder of and key figure in the organisation, compares them to the yellow Star of David that Jews were forced to wear during the Nazi regime (Power 2003, 59). It is said that after the Nazis had invaded Denmark in 1940, the Danish king Christian X, reigning from 1912 to 1947, started wearing the Star of David to express solidarity with the Jews. People across the country are said to have followed his example, thus deceiving the Nazis and beating them at their own game. As problematic as any such analogy between the t-shirt and the yellow star certainly is, it serves to provoke the public and to draw attention to TAC’s objectives and the t-shirt’s functions. If many people wear ‘H.I.V. POSITIVE’ shirts, regardless of their health status, it becomes impossible to identify, stigmatise or discriminate against South Africans living with HIV/AIDS. Consequently, the shirt

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has an inclusive effect and visibly unites AIDS activists in one large group, thus cutting across medical or social categories of difference such as HIV status, class, race or gender. Oversimplifying the situation, however, the analogy falls short of recognising one major difference between these contexts with regard to agency and power. Under the Nazis, Jews were compelled by law to attach the Star of David visibly to all their clothes, whereas it has never been obligatory for anybody to wear an ‘H.I.V. POSITIVE’ shirt. Rather, created by activists for activists, the product serves as a sign of group identity and self-empowerment. The visual culture scholar Annwen Bates points out that TAC breaks with the stereotypical image of AIDS in (South) Africa. ‘Unlike images of the overwhelmed, emaciated and semi-naked African body, these activists wear a transcultural item of clothing, the sloganned T-shirt, while acting in support of HIV-related causes’ (Bates 2007, 75). By choosing to put on the shirt in public, TAC volunteers become active, take responsibility for people’s lives and make their position and political engagement visible. Some individuals have greatly contributed to the symbolic value of the shirt, one of whom is Zackie Achmat. Living with HIV/AIDS himself, he became known for refusing antiretrovirals until they were made available to all South Africans through the public health system. In media reports about TAC marches, speeches and court hearings, he has typically been depicted with the ‘H.I.V. POSITIVE’ t-shirt, thus helping to establish it as a TAC trademark and symbol. By wearing the shirt on a regular basis, Achmat renders visible both the epidemic and AIDS activism in South Africa. In a symbolic act, former president Nelson Mandela also used the shirt to show that he throws his weight behind TAC. In December 2002 when he came to Khayelitsha, one of the country’s largest townships on the outskirts of Cape Town, to visit a local AIDS clinic, a patient presented him with an ‘H.I.V. POSITIVE’ shirt and Mandela put it on immediately (Nattrass 2007, 109-10; Power 2003, 65). Taking into account Mandela’s social standing and (international) reputation as the first democratically elected president of South Africa, this single gesture adds authority and gives publicity to TAC and its objectives. The AIDS clinic in Khayelitsha is run by the organisation Médecins Sans Frontières (MSF) which has provided – in partnership with the Western Cape provincial government – antiretroviral treatment in a pilot programme since 2000 (see Chapter 3). This project has been important to TAC as it demonstrated both the political and medical benefit of generic antiretrovirals for South Africans living with HIV/ AIDS (Nattrass 2007, 105). Taking into consideration this context, Mandela’s gesture puts special emphasis on TAC’s campaigns for treatment. Following the President’s example, the current Minister of Health, Aaron Motsoaledi, also donned a TAC t-shirt at an international conference. This gesture epitomises the break of Zuma’s government

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with Mbeki’s controversial AIDS policies and suggests that politicians and AIDS activists will no longer work against each other but join forces to tackle the HIV/AIDS epidemic. While the t-shirt has gained in significance and popularity through individual public figures who wear it in support, TAC’s mass mobilisation has also led to large-scale participation by South Africans who display the t-shirt in public. Since its foundation in 1998, TAC’s membership has increased considerably. With more than 16,000 volunteers and 72 full-time staff members in more than 250 local branches, TAC has become Africa’s most visible AIDS activist organisation (de Waal 2006, 40). TAC’s activist strategies have spanned local, national and global dimensions, ranging from legal action against international pharmaceutical companies about patent rights and the production of generic antiretrovirals to advocacy networks and to locally based work in schools, factories, churches and community centres (Robins 2004, 664). While the large majority of its volunteers are working-class township youth and unemployed African women, many of whom are HIV-positive mothers trying to obtain antiretroviral treatment for themselves and their children, TAC cuts across divisions by race and class and includes students, trade union members, business people, scientists and journalists (Robins & von Lieres 2004, 580). Successfully recruiting many volunteers into the organisation, TAC has helped to give previously powerless people a voice and political agency (ibid.). Still, the organisation was also criticised for being dominated by Zackie Achmat, Nathan Geffen and Mark Heywood, showing, as the journalist Janine Stephen argues, that TAC also had to grapple with race and gender representation and that the black female leaders Vuyiseka Dubula and Nonkosi Khumalo were not adequately recognised in public (Stephen 2009, 168-9). Alongside TAC’s activities such as civil disobedience campaigns, marches and court cases as well as information platforms such as press conferences and website documents (Wasserman 2007), the shirts, worn in everyday life, at funerals, at street demonstrations and other venues, have fuelled the organisation’s visibility in South Africa. A photograph by Gideon Mendel, a renowned South African photojournalist who has repeatedly addressed HIV/AIDS in Africa in his work, pays tribute to the t-shirt’s prominence and symbolic value. Shot at a TAC march in Durban in 2000, organised on the occasion of the AIDS Conference, the central image section of the photograph features prominently on TAC’s website. The picture is part of Mendel’s documentary photography project A Broken Landscape. HIV&AIDS in Africa (2001) which was on display in the Iziko South African National Gallery between December 2001 and April 2002. The exhibition became accessible to a larger audience, especially in Europe and North America, when it was shown in Italy, Great Britain and the United States and subsequently published

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as a book in cooperation with the international anti-poverty agency ActionAid. Discussing the risks photographers run in thematising HIV/ AIDS in Africa for an international audience, Michael Godby cautions: Typically, photographers in Mendel’s situation, impelled by a sense of urgency to communicate both the scale of the pandemic and the appalling human costs, tend to create images of extreme suffering in the representation of poverty, malnutrition, deprivation and pain. Such images are, of course, rhetorical. They are designed to mobilize their viewers to take action to assist the subjects of the photographs. But, inevitably, these images are the views of outsiders, well-intentioned in their own way, but outsiders nonetheless who tend to speak over the heads of their subjects. (Godby 2003, 17)

While reminiscent of the criticism Geert van Kesteren faced when it was decided not to exhibit his photographs at the AIDS Conference in Durban, Godby, however, argues that Gideon Mendel goes beyond stereotypical representations as he brings together photos and narratives of people living with HIV/AIDS, of their families and communities, of sex workers, health care givers, AIDS educators and activists. Several of these stories are organised in short photographic essays that cover a certain period of time and show the same people in different situations so that viewers are not simply presented with snapshots but can get an understanding of the subjects’ roles and identities (ibid., 17-18). The project design also shapes the reception process: to enable spectators to analyse the complex meanings and aesthetics of a single photograph, of a series of pictures and of the overall venture, they need time. Therefore, exhibitions and book publications are an apt medium for Mendel’s documentary photography (ibid., 18). Mendel’s photo of the TAC march in Durban is a black-and-white image (see Illustration 4.7) showing a group of adults, both men and women probably in their twenties, all of whom wear ‘H.I.V. POSITIVE’ t-shirts that indicate the picture’s contexts of HIV/AIDS and the Treatment Action Campaign. Taking into consideration that the march was organised on the occasion of the International AIDS Conference, the t-shirts can be read as TAC’s attempt to call international attention to the South African epidemic. The identical t-shirts highlight the focus on the organisation and its joint effort rather than on individual responses to HIV/AIDS. Taken in a medium long shot, the photo focuses on the protestors and downplays the surroundings, yet still includes parts of banners and posters on which words like ‘HIV’, ‘AIDS’, ‘Treatment Action Campaign’ and ‘Nation’ are discernible. In addition to the t-shirts, these phrases help to contextualise the picture. The framing of the image balances specific details and individual features against more general characteristics of the group of marchers as a whole. As the group is not contained within the photo’s frame but goes beyond it, the image implies the presence of more protestors, suggesting a large gathering. For the

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4.7 Gideon Mendel, TAC March in Durban in 2000. A Broken Landscape. HIV & AIDS in Africa, 2001. (By permission of Gideon Mendel and Corbis Images)

viewers of the photo, however, it is impossible to find out more since the frame shapes the scale of the event and thus their understanding of the march itself. The marchers hold each other’s hands, smile and, judging by their open mouths, shout or chant. Their photo captures them in the middle of movement, suggesting that they are marching, dancing or most likely doing the so-called ‘toyi-toyi’, a marching dance that was performed during apartheid in street demonstrations to protest against the regime and to intimidate the police forces. In the series A Broken Landscape, the photo is accompanied by Zackie Achmat’s comment on the march. ‘The importance of this march historically is that it helped to change international perceptions. The image of AIDS in Africa is usually one of powerless people, emaciated and dying. What the march showed is that there are many of us who are healthy and fighting to stay healthy’ (Achmat in Mendel 2001, 194). The statement corresponds with Mendel’s photography as it represents TAC volunteers as a large, strong, powerful and enthusiastic group. Achmat’s idea of ‘fighting to stay healthy’ is expressed visually in the photo. Mendel provides an image of the South African epidemic that is characterised by mobilisation, activism and agency. Although he cannot overcome the imbalance of power between the photographer who creates and controls the image and the subjects who have little scope for making decisions, Gideon Mendel ‘has explored the potential of his medium to empower his African subjects’ (Godby 2003, 16). Rather than speaking for the individuals in his images or over their

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heads, Mendel has them ‘speak’ for themselves. In the photo of the TAC march, the protestors’ open mouths literally illustrate how they raise their own voices in public. Positioning themselves as a united and active front against the spread of the epidemic and against the stigmatisation of the virus, also with the help of the t-shirts and the ‘toyi-toyi’, the group calls attention to HIV/AIDS and to treatment opportunities that were still largely inaccessible in South Africa in 2000. Since its creation in 1998, shifting medical, pharmaceutical, political and social realities have shaped the Treatment Action Campaign. In its early years, TAC was primarily concerned with providing access to antiretroviral treatment and with breaking down the stigma surrounding HIV/AIDS. However, over the years and especially since the introduction of HAART programmes in South Africa in 2004, TAC interventions have become more diverse, outgrowing the original main objective. The organisation ‘has positioned itself as part of a wider struggle for social and economic rights in South Africa’ (de Waal 2006, 38). Its programme has come to include, for example, treatment literacy campaigns in which TAC provides education and training on scientific health issues such as HIV/AIDS prevention and treatment. Promoting such ‘expertification from below’ (Robins & von Lieres 2004, 585), TAC encourages and trains people who have historically been at a disadvantage within the context of existing power relations, especially women, to take control over their own bodies and lives. It thus opens up ‘spaces for a remarkable democratic discourse on health citizenship’ (ibid., 580). The development has also had an impact on the t-shirt’s meanings. In view of TAC’s strategies and objectives, the symbol’s subscriptio is subject to change and can include a range of readings. Originally promoting AIDS awareness and treatment, the shirt has also come to connote further issues such as mass mobilisation, community advocacy and self-empowerment.

Metaphors Like symbols, metaphors – especially war metaphors – have been pervasive in representing infections in general and HIV/AIDS in particular, both as a global pandemic and as a national epidemic. Comparable to the red ribbon, artists have worked with and adapted internationally known metaphors to have them signify the particularities of the South African epidemic. The journalist Johnny Steinberg recounts how an AIDS counsellor advises two young HIVpositive Xhosa women to go to the nearest clinic for a CD4+ count. The following day, the women return, but without the results; by the time the women had arrived at the clinic, they had forgotten the instructions. The counsellor realises that she made a mistake: she instructed the

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women in English and used the term ‘CD4+ count’, whereas she should have said, ‘Count your body’s soldiers’ in isiXhosa (Steinberg 2008, 215). Unlike this AIDS counsellor, the women are neither trained in medical issues nor is English their mother tongue, which is why they had difficulties understanding and remembering the instructions. Here it becomes evident that metaphors function as interdiscursive elements that reintegrate complex issues of special discourses into common knowledge. Non-experts are able to understand the medical procedure of ‘measuring’ the immune system’s strength because they can make sense of war imagery, of ‘counting the body’s soldiers’. Studying the use of metaphors is therefore of particular relevance to public health communication in order to develop effective interventions that fit people’s cultural frame of reference (Lengwe Kunda & Tomaselli 2009). Although imagery can help people to follow the scientific explanation, metaphors do not simply illustrate complex issues or enable communication. Like symbols, metaphors contribute to the cultural construction of HIV/AIDS by creating meaning and shaping the ways in which people conceptualise the virus and its impact on the human body. Due to their pervasive use, military metaphors have become institutionalised as a common feature of language. These kinds of metaphors are considered ‘conventional metaphors’, in contrast to creative ones (Knowles & Moon 2006, 6). Part of everyday usage, people hardly read the expressions as metaphorical. To account for this lack of recognition, the metaphors are sometimes classified as ‘dead metaphors’. Zoltán Kövesces, however, points out that this categorisation ‘misses an important point; namely, that what is deeply entrenched, hardly noticed, and thus effortlessly used is most active in our thoughts’ (Kövesces 2002, ix). In their prominent work Metaphors We Live By (1980), George Lakoff and Mark Johnson initiated this cognitive linguistic view of metaphor. The title of their study indicates that they understand metaphors by no means as ‘dead’ but as ‘alive’ and central in influencing people’s reasoning. Kövesces draws on these pioneering ideas and explores subsequent scholarship that both derives from but also expands on the work by Lakoff and Johnson. In cognitive linguistics, metaphor is defined as a way of understanding one concept in terms of another concept (Kövesces 2002, 3-13; Lakoff & Johnson 1980, 3-9); certain elements of the source domain are ‘mapped’ onto the target domain. Scholars differentiate between what they call conceptual metaphor and metaphorical realisations, i.e. possible linguistic or nonlinguistic manifestations of a conceptual metaphor. A new and specific terminology has been introduced in order to highlight differences that this approach has to other theories of metaphor. Convention has it that conceptual metaphors are written in capital letters, with the metaphorical domain mentioned first. For example, contracting HIV/

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AIDS can be discussed in terms of the metaphorical conceptualisation INFECTION IS WAR. Typical features of the source domain war are mapped onto the contraction of HIV/AIDS so that the virus is represented as an enemy and intruder causing physical conflict. Cognitive linguists argue that metaphors influence people’s way of thinking. If infection was conceptualised through another metaphor, the understanding of medical issues would be different. Susan Sontag’s Work on Metaphors In her essays Illness as Metaphor (first published 1978) and AIDS and Its Metaphors (first published 1989), both of which have been highly influential in shaping this field of research, Susan Sontag analyses the metaphoric use of illnesses such as leprosy, syphilis, tuberculosis, cancer or AIDS. In a later volume containing both essays, she begins her analysis by clarifying that ‘illness is not a metaphor, and that the most truthful way of regarding illness […] is one most purified of, most resistant to, metaphoric thinking’ (Sontag 1990, 3). She acknowledges that ‘one cannot think without metaphors’ (ibid., 93) but nevertheless, she wants to minimise the use of metaphors because they ‘load’ illnesses with meaning and thereby contribute to the suffering and add to the stigmatisation of people living with the disease (ibid., 180). Sontag tries to calm the imagination when she makes the metaphoric trappings of cancer explicit, compares cancer metaphors with illustrations of tuberculosis and other diseases. Aiming at demystification she wants cancer to be regarded ‘as if it were just a disease – a very serious one, but just a disease. Not a curse, not a punishment, not an embarrassment. Without “meaning”’ (ibid., 102). In the second essay, AIDS and Its Metaphors, she extends her argumentation and critique of metaphors to focus on AIDS, a condition which was not well researched at the time of the text’s publication. In fact, HIV/AIDS is still incurable and particularly prone to the production of frightening and intimidating meanings, fantasies and myths. While attitudes towards cancer have changed over the years, ‘the advent of this terrifying new disease, new at least in its epidemic form, has provided a large-scale occasion for metaphorizing of illness’ (ibid., 104). Efforts to reduce the mortality of HIV/AIDS are often expressed with the help of military metaphors such as ‘a fight, a struggle, a war’ (ibid., 98). Sontag would like to see this particular metaphor retired because it contributes to the stigmatisation of the virus as well as of those infected with it. The military metaphor ‘overmobilizes, it overdescribes, and it powerfully contributes to the excommunicating and stigmatizing of the ill’ (ibid., 180). People who are HIV-positive or who have fallen ill with AIDS (or people who are suspected of being infected or ill) are isolated from society and regarded as enemies. Because of the metaphors, stigmatisations and mystifications that surround the virus,

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HIV/AIDS ‘brings to many a social death that precedes the physical one’ (ibid., 122). Testing positive for HIV – or, as Susan Sontag points out, having been tested for antibodies to the virus rather than the virus itself – is often equated with being ill (ibid., 120), although HIV/AIDS is categorised as a slow disease with a long latency period between the contraction of the virus and the first symptoms of opportunistic diseases. The metaphors have very real consequences because they inhibit people from getting tested and from seeking counselling or (early) treatment. Not only is HIV/AIDS ‘fought against’ by physicians, but ‘war is waged’ against the virus by society as a whole (ibid., 98). In what is thought to be an ‘emergency’, expense and outcome are no longer of importance since in this situation all means seem to be justified and ‘no sacrifice is excessive’ (ibid., 99). HIV/AIDS should not acquire metaphorical meaning but rather be shown for what it is, a virus, a syndrome. Similarly to what happened to other diseases like leprosy, the mythification of AIDS is bound to be overcome ‘when the illness is much better understood and, above all, treatable’ (ibid., 181). Metaphoric Realisations of HIV/AIDS in South Africa: INFECTION IS WAR In Kgebetli Moele’s novel The Book of the Dead (2009), which received the K. Sello Duiker Memorial Award 2010, one of the South African Literary Awards, the conceptual metaphor INFECTION IS WAR is a central literary strategy of representing HIV/AIDS. Divided into two parts, the first half of the novel, entitled ‘Book of the Living’, traces the life of the protagonist Khutso – his youth in a poor and rural community, his studies at the University of the North, his relationship with his wife Pretty and their son Thapelo. HIV/AIDS is introduced to the novel when Pretty tests HIV-positive and commits suicide. Learning about her HIV status only after her death, Khutso blames her for infecting him. He despairs but finally realises that ‘something had possessed him and it made everything that had happened to him irrelevant. It’s okay, it told him. This is life. What has happened doesn’t matter. What matters is to live. This is life and it is for the living. It has to be lived’ (Moele 2009, 80, emphasis added). In a naive reading, this quote sounds reassuring because Khutso is reminded that life is worth living, regardless of his HIV status. However, in the course of the narrative it becomes clear that ‘something’ and ‘it’ refer to the personified virus, which is also used as first-person narrator in subsequent parts of the novel. It (ab)uses Khutso and others living with HIV/AIDS for its own benefit because they help the virus to spread the epidemic. The second half of the novel, ‘Book of the Dead’, is organised as a journal in which the virus and Khutso keep record of new infections; the first entry is dedicated to Khutso himself, the following ones to the women whom he infects. The concept INFECTION IS WAR is omnipresent because the novel, especially in the journal, repeatedly features numerous metaphorical

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realisations that all draw on the semantic field of warfare; these include ‘battle’, ‘fight’, ‘front line’, ‘conquest’, ‘mission’, ‘command’, ‘recruit’, ‘forces’, ‘legion’ and ‘soldiers’. Characterising Khutso and others living with HIV/AIDS as ‘soldiers’ implies that they are ‘dangerous’ because they are ‘armed’, ‘fight against’ and possibly ‘kill’ others. In this context, Khutso’s descriptive first name reads like an ironic, or even cynical, comment: ‘his mother had named him Khutso because that was what he brought to her: peace’ (14). Moreover, the ‘soldiers’ are presented as part of a large organisation, referred to in the novel as a ‘legion’, which illustrates the large number of people living with HIV/AIDS. To fulfil its ‘mission’, the personified virus wants its ‘soldiers’ to ‘fight’ as long as possible. Khutso ‘must save his life, not for himself but for the cause’ (133); therefore the virus even makes him take antiretroviral medication. It sounds paradoxical that the virus recommends antiretroviral medication but the virus explains its position. ‘ARVs. I like them. In fact, I love them. I want my soldiers to live as long as they can. I want them to have the freshest faces for the longest time, so that no one ever suspects that they are sick’ (133). This quote makes apparent that the ‘soldiers’ are not identifiable as such. An HIV infection can remain ‘invisible’ and thus ‘abstract’ for a long period, which is why individuals might be HIV-positive without knowing it themselves. Such a case is presented in the novel: ‘Nkululeko thought that he was knowledgeable, that he could outwit my forces, but what he didn’t know was that he was already on the front line – and he stayed there for a full four years, a grade-A soldier working for me tirelessly night and day’ (138). Written from the perspective of the virus, this quote cynically illustrates different levels of knowledge. While this character is still unaware of his infection, the virus praises him as a particularly good ‘soldier’. Although the novel’s representation of the epidemic is steeped in the metaphor INFECTION IS WAR, the virus stresses that the infection is not about coercion or conflict. ‘You lovingly summon me. I don’t break in. My schemes are not like that. I am willingly invited in, and only then do I take up my position and do my work’ (77). This comment underscores that the spread of HIV/AIDS might be a highly intimate phenomenon because sexual intercourse is the most likely transmission route, although it neglects the reality of forced or nonconsensual sex. Generally speaking, INFECTION IS WAR is a very conventional form of representing HIV/AIDS, which is why people often hardly register the metaphorical terms and phrases. The Book of the Dead, however, uses some strategies that invite the readers to reflect upon the representation of HIV/AIDS. The military metaphors are employed so frequently, if not excessively, that it is difficult not to take notice of them. Moreover, with the virus as a first-person narrator, the novel uses a strategy of defamiliarisation intended to make the readers aware of the signifying

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processes. Finally, the novel engages with the concept of authorship when the virus states at the very end, ‘I have conquered another author of no mean talent, and we are starting another book together for the cause’ (165). This quote creates an ambiguity: on the level of the story, ‘author’ refers to someone living with HIV/AIDS who will follow Khutso’s example and keep ‘another book’ of new infections; on the level of the literary communication, the quote implies that after Kgebetli Moele tackled the issue in The Book of the Dead, another author will write another novel about the epidemic. Although Ithemba Means Hope (Mhlophe 2006) is also a South African manifestation of the metaphor INFECTION IS WAR, it works differently than the The Book of the Dead – not least because Ithemba Means Hope is short and targeted at children and youth. From his perspective as a protagonist and first-person narrator, the eleven-year-old boy Themba tells the readers about his friend Philisiwe who has suffered from various ailments and then learns that she has AIDS. To give support, Themba accompanies Philisiwe and her mother to the clinic when Philisiwe is tested for HIV. Themba’s parents are HIV-positive which is why he feels ‘a bit of an expert’ (7). Nevertheless, he benefits from the explanations of the AIDS counsellor, Sister Gabela, as much as Philisiwe does. They learn that ‘little by little, the HIV weakens the mind and the body. A healthy body is good at defending itself against sicknesses like TB or flu or stomach trouble. But the HI virus destroys the body’s defence system and makes the body weaker’ (12-13). In this explanation, the target domain of the infection with HIV is discussed in terms of the source domain war or, to be more precise, in terms of characteristic features of war such as attack, defence and destruction, which are mapped onto the concept of infection. Ithemba Means Hope features many colourful and realistically drawn pictures which add to the message of the written text. Unlike the other illustrations, the pictures about the functioning of the immune system are part of the story as they are presented as the AIDS counsellor’s drawings. Introducing and commenting on them, Themba writes that ‘Sister Gabela drew these images to explain what happens’ (13). Presented as if they were drawn in pencil on lined paper and provided with hand-written explanations, the visual arrangement supports the idea that these images stem from Sister Gabela’s AIDS education (see Illustration 4.8). Operating with the same metaphorical concept as in her oral explanation, the drawings depict the workings of a healthy and a weakened body’s defence system. The germs and the viruses are personified and depicted as living beings equipped with boxing gloves. With the help of comic-book-style sketches, movement and feelings such as pain and dizziness are indicated. The pictures illustrate metaphorically that an infection equals a fight between the body’s defence system and germs. In the case of the healthy body, the defence system can

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4.8 INFECTION IS WAR: Body’s Defence System v. HI-Virus. Gcina Mhlophe, Ithemba Means Hope, 2006. (By permission of Shuter & Shooter Publishers, Pty, Ltd)

overpower the germ. The distribution of strength is made apparent as the single germ is of less body mass than the defence system. With its arms outstretched and no longer aiming at its opponent, the germ is about to fall over due to the blow it received. As for the weakened body, however, two ‘HI-VIRUSES’ outnumber and defeat the defence system. Lying on the ground, the immune system holds its head, arms and legs close to its body in an attempt to protect itself from further beatings. Smiling mischievously, the viruses keep boxing the beaten defence system so that it has no chance of regaining strength. In her depiction, Sister Gabela imitates the representation of HIV conventionally used in medical scientific publications: she shows the virus with its knobbly surface structure. The viruses are thus set apart from the germ shown in the first image. Furthermore, her attention to detail in drawing the virus characterises the AIDS counsellor as well-informed and familiar with specialist literature in which microscope images are often replicated or imitated in schematic drawings to demonstrate how the virus works in the body. Taking into consideration that young people are the target audience of Ithemba Means Hope, the metaphorical realisations can be read as didactic means of explaining complex issues. Representing her message both verbally and visually, the AIDS counsellor clarifies the effects an

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HIV infection has on the human body and its immune system. Expert knowledge in the special discourse of medicine is not necessary in order to understand her explanations. Both the fictional characters and the young readers can comprehend the counselling on the basis of their understanding of the source domain war. Furthermore, Themba and Philisiwe create their own realisation of the conceptual metaphor. The AIDS counsellor provides them with statements like ‘What’s good for the virus is bad for the body; and what’s bad for the virus, is good for the body!’ (16) The creative arrangement of her words as an antithesis appeals to the children and reminds them of a ‘fighting song’ (16), which is why they keep chanting the lines. In analogy to a war song, Philisiwe prepares herself – with Themba’s support – for ‘the battle against AIDS’, namely for the time to come when she will take antiretrovirals. The protagonists do not only passively receive but actively contribute to the manifestations of the concept INFECTION IS WAR. In Ithemba Means Hope, the characters use, create and perpetuate military metaphors and, in general, Susan Sontag’s criticism holds true for these manifestations. However, the metaphors can also be said to be beneficial for the characters and the reading audience. Functioning as interdiscursive elements, they make key ideas of medical expert knowledge on HIV/AIDS accessible to non-experts, here primarily to children and teenagers. Furthermore, the HIV-positive Philisiwe is not considered an enemy. In the character constellation with Themba, she is presented as equal, as a close friend. Since the protagonists use the metaphorical realisations creatively, they claim an empowered position for themselves. Hi! I am HIV Positive (Khan 2002, no pagination), is another book for a young audience, mainly younger children, that works along similar lines. Its first-person narrator is the six-year-old HIV-positive girl Thandeka who lives in KwaZulu-Natal, together with her mother and grandmother. Her mother is a health worker who runs a health care centre in their village. She educates Thandeka about the virus, which is why the girl is well-informed about HIV/AIDS and can pass on her knowledge to the readers of the book. As in Ithemba Means Hope, the text in the book is accompanied by many coloured pictures, including charts from the health care centre that Thandeka refers to in order to explain how HIV/AIDS enters the body. Describing the infection with HIV in words, Thandeka states, We all have blood cells in our blood. There are white and red blood cells in our body. The white blood cells are like soldiers in the body. They fight any illness (bad germs) and help to keep us strong. When the aids virus HIV enters the body, this virus pretends and acts like a soldier, like a white blood cell. It pushes its way into the white blood cell eating all the nourishment and strength of the white cell. Soon the white cell dies and the HIV cell

98 Breaking the Silence becomes stronger. It bursts open and spreading lots of little HIV cells to all parts of the body soon the body becomes very weak from the virus.

The infection is not introduced by a metaphor but by an explicit comparison, ‘white blood cells are like soldiers.’ Still, the metaphorical conceptualisation INFECTION IS WAR runs through the quote. In order to illustrate the impact of the virus on the immune system, characteristic features of the source domain like soldier, invasion, fight, defeat and death are transferred onto the target domain. Thandeka also evaluates the process when she characterises illnesses as ‘bad germs’. She creates a binary opposition of ‘white blood cells v. germs’ and associates the dichotomy with ‘good v. bad’. Her judgement is based on moral categories which clearly go beyond the scope of the physical body. As Susan Sontag criticises, this evaluation can give rise to the stigmatisation of and discrimination against infected people. The expressions are accompanied by visual metaphorical manifestations, presented as elements from the aforementioned charts on display at the health centre. Both the white blood cell and the virus are presented as human figures with very muscular bodies (see Illustration 4.9). Using a narrative strategy reminiscent of comics, a sequence of three images serves to illustrate the course of events. After entering the body the virus can overpower the white blood cell. On the one hand, the virus stands upright with its hand on its hip, a gesture that shows that it is able to keep fighting. The white blood cell, on the other hand, lies on its back on the ground without showing any attempt to defend itself against the virus. In the next image, the HIVfigure starts to eat the body of its opponent. The white blood cell is still recognisable because of its unchanged position on the ground, but its body has come to look like an empty bag of skin. In the final image, the virus has gained considerably in strength, whereas the white blood cell is no longer detectible; only some unidentified body parts are left scattered across the ground. The sequence can be criticised for its limited scope and fatalistic outlook. As only one white blood cell is shown, it looks as if all white blood cells disappeared and there was no chance of recovery. Yet this comic-book-style narrative ‘misses the full picture’. Antiretroviral medication can halt the activity of the virus and thus contribute to a revival of white blood cells and the body’s immune system. This treatment option, however, is not accounted for in the image. As this analysis shows, interdiscursive elements do not simply ‘reflect’ and circulate information from special discourses but contribute to the cultural construction of the issues with which they are concerned. In this case, the metaphorical realisation paints a bleaker picture than the special discourse of medicine since treatment options are erased. In Ithemba Means Hope, recovery is not specifically addressed, either. However the body’s defence system is presented as

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4.9 INFECTION IS WAR: HIV v. White Blood Cell. Fiona Khan, Hi! I am HIV Positive, 2002. (By permission of Fiona Khan and Peter Sanderson)

only weakened, not destroyed or eradicated, which is why the text’s message is less pessimistic. In Hi! I am HIV Positive and Ithemba Means Hope, the conceptual metaphor INFECTION IS WAR is realised verbally and visually. Following Susan Sontag’s argumentation, both texts can be criticised for their war metaphors because they add to the stigmatisation of the virus and, by extension, also of those living with HIV/AIDS. In Hi! I am HIV Positive, the moral evaluation of germs as ‘bad’ feeds into this misconception. The visual manifestation of the virus can be criticised along similar lines. HIV and the white blood cells are presented as human figures fighting each other. The transferral of ideas about the virus onto people living with HIV/AIDS is already inscribed into the illustration. Compared to this depiction, both the immune system and the virus are shown in a more alienated way in Ithemba Means Hope. Although personified and presented with arms, legs and faces, they do not come across as humans because of their egg-like shape. Furthermore, the picture is drawn in pencil on lined paper so that the manifestations call for more distance and reflection than those in Hi! I am HIV Positive. Applying Sontag’s findings to these manifestations, it becomes obvious that she does not differentiate between the functions of metaphors in different genres. With regard to Hi! I am HIV Positive and Ithemba Means Hope, the classification of these texts as children’s and teenage fiction can also be made productive for this analysis. On the one hand, war metaphors as interdiscursive elements can be of advantage to this genre and its didactic function as they make key ideas of medical knowledge accessible to non-experts. Complex biomedical processes of an HIV infection are reduced to their basic elements. Children and teenagers can learn what effects the virus has on the physical body without any special training or expert knowledge. On the other hand, however, metaphorical realisations can be particularly problematic in this genre. Through the texts, young readers grow more and more familiar with this way of representing HIV/AIDS. They learn to accept the conceptual metaphor INFECTION IS WAR as ‘natural’ or ‘given’; they are

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not encouraged to expose the metaphor, to reflect on its connotations and functions or to think of other possibly less problematic ways of bringing across the information. An Alternative Conceptualisation: I NFECTION IS A D RAGON In spite of its pervasiveness, INFECTION IS WAR is not the only conceptual metaphor to represent HIV/AIDS in fiction for a young target audience. The children’s book Brenda Has a Dragon in Her Blood is structured by the creative metaphor INFECTION IS A DRAGON.6 The title and the frequent repetition of the phrase ‘Brenda has a dragon in her blood’ (Vink 2005, 19, 21, 26, 33) pay tribute to this conceptualisation. In describing the HIV-positive status of the three-year-old protagonist Brenda, the narrator states, ‘Brenda has a dragon in her blood. His real name is HIV and he is a naughty virus dragon’ (19). Elements of the source domain dragon are transferred onto the infection with HIV, the target domain. These elements include attributes of a dragon such as dangerous, scary and hard to control. Another significant feature of the source domain dragon is its characterisation as a mythical creature. According to cognitive linguistics, the mappings of the source onto the target domain are partial (Kövesces 2002, 79), which means that the correspondences are established on the basis of selected attributes only. Still, if the readers of Brenda Has a Dragon in Her Blood activate the element ‘mythical’ to comprehend the target domain of the infection with HIV, the metaphor will trigger a major misunderstanding. The reading would give way to the idea that the virus does not exist but is only part of an imaginary fable world. The dragon, which lives with Brenda, is realised visually in every illustration of the book that features the little girl. In most images, the dragon is asleep and depicted as fairly small. Positioned on the floor next to other, larger objects such as two large pumpkins or a stone, in an open and overflowing drawer, behind a radio, underneath a bed or sofa or in other equally marginal places that hardly catch the eye of the reader, the portrayal of the nameless dragon suggests that Brenda does not notice or suffer from its presence in her everyday life. The narrator argues that it is the medication of antiretrovirals that sends the dragon to sleep (21). As long as the dragon is asleep, attributes such as dangerous and wild are implied but not yet apparent. However, the dragon’s behaviour changes significantly as soon as it wakes up and makes Brenda feel sick. No longer illustrated as small or asleep, it is represented as a big creature, positioned in the centre of the illustration (see Illustration 4.10). When Brenda remains in bed, the dragon sits by her and stares at her. Not only do the images show what happens once 6

Brenda Has a Dragon in Her Blood was originally published in Dutch as Brenda heeft een draakje in haar bloed (1998). Nonetheless, the book is included here because it is distributed in South Africa by Biblionef, an organisation that donates books to children and adolescents, especially in rural areas and in townships.

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4.10 INFECTION IS A DRAGON: Brenda’s Dragon is Awake. Hijltje Vink, Brenda Has a Dragon in Her Blood, 2005. (By permission of Hijltje Vink)

4.11 INFECTION IS A DRAGON and INFECTION IS WAR: Brenda’s Dragon v. Soldiers. Hijltje Vink, Brenda Has a Dragon in Her Blood, 2005. (By permission of Hijltje Vink)

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the animal is awake, the narrator also describes the effects in words. HIV dragons which wake up are dangerous. They start to fight the little soldiers that live in everybody’s blood and protect us. In the beginning the soldiers are strong and win easily. But the longer they fight, the more tired the good, little soldiers become. Then they can’t fight as well and slowly, slowly the dragon starts to beat the soldiers. (23)

In this description, the creative conceptual metaphor INFECTION IS A DRAGON is combined with the conventional one INFECTION IS WAR. Although the dragon metaphor structures the children’s book, the narrator still draws on the source domain of war to explain the workings of the immune system. The inclusion of the war metaphor highlights how prominent and influential this conceptualisation is. Used again and again, the metaphor INFECTION IS WAR has become institutionalised and shapes human thought to such an extent that it becomes very difficult to discuss the process of an infection without drawing on this concept. Like the metaphorical verbal expressions, the illustration that accompanies the narrator’s statement is a visual manifestation combining both the dragon and the war concepts (see Illustration 4.11). The background of the illustration is coloured in red and takes on the form of a drop, resembling an over-sized drop of blood and indicating that the fight takes place within a person’s blood. In fact, the image does not so much show the fight itself but rather its outcome, namely the dragon’s victory. Although clearly outnumbered by the seventeen soldiers, the dragon is so powerful that it beats the soldiers. Lying on the ground, motionless and without any order, the soldiers seem to be dead. With their uniform clothes and boots, their helmets and shields, they are characterised as a homogeneous group. Since only shields and no weapons are visible they are presented as a defence troop rather than armed forces equipped for attack. In comparison with the soldiers, the dragon is big. With its tail, wings and arms raised and its jaws opened, it looks frightening and aggressive. Like the soldiers, the dragon does not have any weapons and, contrary to common illustrations of dragons, it does not breathe fire either. The distance between the dragon and the group of soldiers counter-indicates a physical attack. All in all, it is not the actual fight between the dragon and its opponents that is of concern in the drawing. Instead, the dragon’s power over the soldiers is at the centre of attention. The illustration can therefore be read as an effort to reduce the prominence of the conceptual metaphor INFECTION IS WAR. Brenda Has a Dragon in Her Blood is an attempt to overcome the well-established military metaphor and to represent HIV/AIDS through a new and creative metaphor but INFECTION IS WAR still plays into this representation of HIV/AIDS and the creative metaphor INFECTION IS A DRAGON gives rise to other problems, as the reading of a dragon as an imaginary creature has shown.

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I NFECTION IS W AR : Incorporating Culturally Specific Elements An AIDS mural at the Bartel Arts Trust Centre (BAT) in Durban incorporates specifically South African features by creating intertextuality with depictions of traditional Zulu warfare (see Illustration 4.12). Compared to the previous texts, the mural is more easily accessible to the general population. As a wall painting in central Durban, its limits are shaped by geographical factors rather than social categories of difference. The Nelson Mandela/HSRC Study of HIV/AIDS shows that murals achieve a high level of recognition. In urban formal surroundings, 60.5% of the people indicate that they are exposed to HIV/AIDS information via murals and billboards (Shisana et al. 2002, 94-5). Since the mural at the BAT Centre does not work with verbal signs, it does not privilege one of the languages spoken in South Africa over others and thus does not favour or exclude particular language communities. Among other elements, the mural depicts a small group of personified phallic condoms which go to war with an enemy not visible in the frame. They carry spears, sticks and shields, and their faces, in particular that of the condom in the centre of the picture, look serious, determined, angry. They all stare in the same direction, focussing on something outside of the mural’s frame, with their brows wrinkled. Some of them are painted with an open mouth that appears to shout. One condom sports a red ribbon and the adornment of the other condoms is also influenced, both in shape and colour, by the red ribbon. Although the enemy is invisible and although there is no further information on the mural’s message, the depiction of condoms and the red ribbon is enough to locate the image in the context of the epidemic and to read it as a manifestation of the conceptual metaphor INFECTION IS WAR. Especially the weapons and shields indicate that the condom soldiers stand in the tradition of Zulu warriors. In the nineteenth century, the Zulu were organised in a strong and cohesive political system, as opposed to the loosely structured, smaller chiefdoms of the southern Nguni peoples like the Xhosa. To establish and maintain this centralisation, the Zulu developed an age-regiment system in which young men between puberty and marriage were recruited to fight, hunt and work on behalf of their king (Davenport 1987, 65). The regiments were major instruments of power, functioning both as military forces and as means of state authority and control (Marx 2004, 52). The age-regiment system was not exclusively practised by the Zulu but also by other peoples in southern Africa; the extent of centralised power, however, is characteristic of the Zulu. Especially in the early nineteenth century, under their king Shaka, the Zulu had unchallenged supremacy in the region (ibid.). Since the wall painting alludes to Zulu history, the fight against the spread of HIV/AIDS is presented as relevant to the Zulu people and to KwaZulu-Natal, the province in

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4.12 AIDS Mural at the Bartel Arts Trust Centre in Durban. (Photograph by Ellen Grünkemeier, 2007)

contemporary South Africa in which the Zulu mainly live. Moreover, the mural suggests that certain characteristics of the Zulu regiments can be transferred onto the group of condoms. In analogy with the centralisation of forces among the Zulu, the fight against the spread of the virus also calls for a systematic and well-organised approach. The war against HIV/AIDS is presented as a task for men because the military forces are depicted as condoms; they are associated with young men in historical Zulu age-regiments; and their warfare activity is connoted as stereotypically male. This representation, however, is not consistent with present-day South African realities. Far more women than men are actively involved in addressing the epidemic in that they function as volunteers, activists, care givers and AIDS counsellors (de Waal 2006, 40).7 Due to the interconnections with Zulu history, the 7

This tendency also becomes evident in the National HIV Counselling and Testing Campaign of Jacob Zuma’s government: 60% of those tested for HIV were women; more men shall be involved in future testing campaigns (South African Press Association 2011). The majority of TAC’s activists

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mural can be said to function as a culturally specific realisation of the conventional conceptual metaphor. Still, there are further elements in the wall painting which do not allude to traditional Zulu warriors, such as the hats and trainers worn by some of the condoms. They can be read as signs that the spread of the virus is not limited to this province but has had a global impact, highlighting that HIV/AIDS cannot only be considered a local phenomenon but is also a pandemic. The mural, a postcolonial pastiche, works with allusions and implied references and is characterised by many layers of signification. Compared to the previously discussed manifestations, the centre of attention is shifted in the mural. It is not concerned with the battle between immune system and virus within individual bodies; instead, the wall painting refers to the fight against the epidemic in KwaZuluNatal and, by extension, in South Africa, thus addressing a broader social dimension. Below the condoms the heads of a group of people, like an audience watching the scene, are visible. Most of them are coloured light brown, although some are depicted as red. The choice of colours suggests that the people painted in red can be identified as living with HIV/AIDS. The relative number of people in red, one in three, supports this reading even if it paints a bleaker picture than statistics, according to which the HIV prevalence among adults aged 15 to 49 varies greatly between the provinces. KwaZulu-Natal is found to have the highest HIV prevalence of about 25.8% (Shisana et al. 2009, 35). The condoms’ weapons are pointed neither at the audience in general nor at its red members in particular but in the direction of their gaze. Although the spectators are passive and removed from the condom warriors, the red figures stand out from the crowd and are linked – through colour – with warfare and the ribbon-bearing warriors. Again, this reading underscores that the wall painting thematises the epidemic as a social issue that goes beyond the realm of the individual. Living in regions with a relatively high HIV prevalence, people are confronted with and affected by the virus, even if only indirectly because they themselves are not infected. INFECTION IS STRUGGLE The fight against the epidemic is frequently signified as the ‘new struggle’, thereby establishing an analogy with the ‘old struggle’, the resistance movement against South Africa’s state policy of apartheid (Horne 2004, 406). Not only does the connection become apparent in (contd)

are also women; it is estimated that they make up about 70% of the members (Stephen 2009, 166). Jonathan Morgan, a psychologist who organised a memory box project in a township near Cape Town, has also witnessed a similar trend. Support, education or discussion groups are mostly made up of women since men are less willing to know their HIV status and to face the epidemic. Only one man, called Thobani, took part in the project, but he dropped out before he finished telling his story. To highlight this gap of involvement, his incomplete project work is also included in Morgan’s edited book Long Life (2003). For a more detailed discussion of this art book, see pp. 180-6.

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the corresponding phrases ‘old struggle’ and ‘new struggle’, continuity between the struggles can also be recognised in the degree of overlap amongst the people involved. Many South Africans who fought against the apartheid system are still active in the fight against the spread of HIV/AIDS; to name just a few: Zackie Achmat of the Treatment Action Campaign used to be an anti-apartheid activist; the comedian Pieter-Dirk Uys has given his voice to the struggles by ridiculing and criticising the system of apartheid as well as governmental AIDS policies; the photographer Paul Weinberg has used his camera to fight in both struggles; and the cartoonist Zapiro has made use of his pen to express criticism. Focussing on the connection between the old and the new South African struggle, Zapiro’s cartoon ‘The New Struggle’ (see Illustration 4.13) is an intertextual reference to Sam Nzima’s famous photograph of Hector Pieterson, one of the first school children shot dead in the Soweto riots. The uprising was a defining moment in the liberation struggle. On 16 June 1976, black students in Soweto protested against the directive of the Afrikaner National government that wanted to impose Afrikaans as the language of instruction in township schools. While this issue and its ideological implications occasioned the march, further aspects aggravated the situation and played into the unrest, such as the general resentment of the Bantu Education system, rising unemployment and the housing shortage among the black population (Davenport 1987, 430-5). The initial reaction of the South African authorities to the outbreak was repression: they tried to put down the uprising by force, by setting dogs on the marchers, firing teargas and live bullets. In these clashes with the police and the protest’s violent aftermath, hundreds of blacks, many of them youths, were arrested and killed (Davenport 1987, 434; Ross 1999, 143). Nowadays the events are commemorated on the day of the initial outbursts as Youth Day, previously known as Soweto Day. Sam Nzima’s photo, published around the world, came to represent the brutality of the police during the Soweto disturbances of 1976 and, by extension, the apartheid regime. It shows the mortally wounded twelve-year-old Hector Pieterson being carried by a fellow student and Hector’s horrified sister running next to them. Zapiro’s cartoon was published in the Mail and Guardian thirty years later, on Youth Day 2006. It is a re-writing, or rather re-drawing, of Nzima’s picture. The set-up of the image is exactly the same. An unconscious boy is carried by an older young man in dungarees, a girl with her hand outstretched in sorrow running alongside him. Even details of Zapiro’s cartoon concerning clothing, movement or facial expression correspond closely to the photo. However, the victim’s jumper displays ‘HIV/AIDS’ in large letters, matching the cartoon’s title ‘The New Struggle’. The cartoon makes use of Nzima’s iconic photo of the old struggle and appropriates it to take on South Africa’s

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4.13 Zapiro, The New Struggle. Mail and Guardian, 15 June 2006. (By permission of Zapiro)

present challenge, the HIV/AIDS epidemic. Taking into consideration the different connotations that the conceptual metaphors INFECTION IS WAR and INFECTION IS STRUGGLE have in South Africa, Sontag’s critique of military metaphors appears in a different light. The struggle metaphor not only connotes stigmatisation and victimisation of the virus and those living with it; it also draws on a shared South African history and cultural memory of the old struggle and its positive outcome (Horne 2004, 417). As such it gives hope for the future and promises possible success in dealing with the HIV/AIDS epidemic. In both Nzima’s photograph and Zapiro’s cartoon one can only see the victim’s head in profile and not the face with its individual features, unlike the faces of the teenage boy and girl. Like Hector Pieterson, who has come to represent casualties of the protest in Soweto in general, the boy in Zapiro’s cartoon stands for people living with HIV/AIDS in general. Both illustrations, however, deal with a particular age group – youth. Many of the people killed or injured in the Soweto riots were school children; and HIV/AIDS has also had a great impact on young people. Of the about 5.6 million infected South Africans about 1.3 million are under 25 years of age (Dorrington et al. 2006, ii). Like the depiction of the boy’s face, the background in Zapiro’s cartoon also invites a generalisation. The surrounding is completely blackened and the three figures are spotlighted. Unlike Nzima’s photo with its typical township houses, the background does not provide any clues as to the setting. Had it not been for the cartoon’s title ‘The New Struggle’ and the intertextual correspondence with Nzima’s photo, it would not have

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been possible to locate this drawing in its specifically South African context. As for the forces that killed these boys, it is remarkable that the perpetrators are not shown in either of the two images. From history it is known that Hector Pieterson was shot by the police (Ross 1999, 142). By extension, the former Afrikaner Nationalist government can also be held accountable for his death because its decisions sparked the student protests. Introducing apartheid as a state policy, the Afrikaner Nationalist government was regarded as the enemy in the old struggle. In the new struggle, the other boy seems to have died from HIV/AIDS. Like all the other so-called ‘AIDS victims’ the boy has ‘fallen prey’ to the syndrome. With the help of antiretroviral treatment, however, HIV/ AIDS is potentially a medically manageable condition, comparable to chronic diseases that require regular medication and check-ups but are not considered terminal illnesses. Therefore, the classification of the boy in the cartoon as an ‘AIDS victim’ is too simplistic. Zapiro’s cartoon can indeed be read as a critique of the AIDS policy of Mbeki’s administration. By analogy with the case of Hector Pieterson and the old struggle, responsibility for the boy’s death lies with the government which is blamed for its unwillingness to face the extent of the HIV/ AIDS epidemic and to react accordingly. Although equitable access to treatment has posed major economic and administrative challenges in South Africa, the late and insufficient rollout of antiretrovirals has markedly political and ideological overtones (see Chapter 3). The situation is further aggravated by the fact that this new struggle is fought in the times of a democratically elected government. The political transition gave rise to high expectations and the ‘New South Africa’ is supposed to cater to the needs of the general population, whereas the apartheid regime used the political apparatus to systematically oppress, discriminate against and murder the non-white majority of South Africans. ‘Although the apartheid government began to acknowledge the AIDS “problem”, they approached the issue in a manner that strongly suggested that AIDS was a black disease and therefore posed no threat to the white population’ (Fourie & Meyer 2010, 147). The Afrikaner Nationalist government therefore met considerable resistance when it stirred into action and tried to launch education and prevention programmes in the early 1990s. The programmes were held to be a racist conspiracy to control the population growth among blacks by convincing them – as expressed in the so-called ‘ABC slogan’ – to abstain, be faithful and ‘condomise’. Anti-apartheid activists lampooned the acronym AIDS, claiming that it meant ‘Afrikaner Invention to Deprive us of Sex’ (Meredith 2005, 667). Working with the binary oppositions of ‘us v. them’, ‘black v. white’, ‘African v. Afrikaner’, this phrase underscores power relations in apartheid South Africa. Since the end of white minority rule, this mythification of HIV/AIDS

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has no longer been prominent. The ANC government is not suspected of such a racist ploy, but its lack of action has often been heavily criticised and also ridiculed. In his shows, the satirist Pieter-Dirk Uys stages a conversation between Thabo Mbeki as South Africa’s President (1999-2008), represented by a puppet, and Pieter Willem Botha, Prime Minister (1978-84) and President (1984-88) of apartheid South Africa, impersonated by Uys himself. In this discussion, Botha, a strong advocate of racial segregation and white superiority, is impressed by Mbeki’s ability to kill off the black majority of South Africans with the help of AIDS, thus succeeding where apartheid failed. Mbeki, however, smiles and corrects Botha when he states that he does not kill people but simply lets them die. With this sarcastic sketch Pieter-Dirk Uys strongly criticises Mbeki’s uncommitted AIDS policy as feeding into the racist ideology of apartheid. Reading his behaviour in this way, Uys calls into question whether Mbeki fulfilled his role as a democratically elected president who is expected to act on behalf of his people. Nelson Mandela is not included in this sketch although the epidemic was not a priority of his presidency, either. Unlike Mbeki, however, he has not been confronted with such heavy criticism. The different reactions to their AIDS policies can only be understood in context (see also Chapter 3). Firstly, in the early years of democracy many other issues demanded attention, which might explain, though not justify, Mandela’s lack of commitment in this particular area. Secondly, Mandela had meanwhile started to address HIV/AIDS in public. Thirdly, Mandela’s lack of commitment had not caused such a stir as Mbeki’s questioning of the virology of HIV/AIDS. Unlike the anti-apartheid movement, the new political struggle was not designed to target government but has been concerned with fighting against the spread and stigmatisation of HIV/AIDS. As a leading organisation in this new struggle, the Treatment Action Campaign, for example, has drawn on activist methods employed in anti-apartheid resistance which largely results from the fact that many TAC protestors were also involved in the earlier struggle. Still, the interventions differ from the fight against apartheid: in its campaign for equitable access to treatment, TAC has not worked towards destabilising or overthrowing ANC rule. Despite opposing stands on health issues, many TAC leaders and volunteers are members of the ANC and generally sympathetic towards what they consider the people’s government (de Waal 2006, 36) – which is not to say, however, that TAC has not been perceived and criticised as ‘anti-government’ or ‘unpatriotic’ (Robins & von Lieres 2004, 582). TAC has followed a very pragmatic course of action: while siding at one point with government in order to challenge international pharmaceutical companies over patent rights, profits and the production of generic antiretrovirals, TAC also criticised Mbeki’s official support for AIDS dissidents and launched legal action against

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the government. As these interventions show, TAC has negotiated its relation to the government without, however, calling into question the legitimacy of ANC rule. This marks a major difference between the old and the new struggles. Alex de Waal concludes that ‘TAC is a stepchild of the popular struggle that brought racist rule to an end’ (de Waal 2006, 36). Using the metaphor ‘step-child’, he highlights that in some respects TAC continues the earlier struggle as if it were a child following in its parents’ footsteps. Taking into account the differences in the struggles’ objectives and enemies, the correlation of the old and the new struggles needs some qualification, expressed here as ‘stepchild’. Despite this difference and the cynicism expressed in Uys’s sketch, the metaphorical conceptualisation INFECTION IS STRUGGLE can be discussed as an optimistic mode of representing HIV/AIDS because it implies that there are promising ways to cope with the epidemic, but they require action. This expectation is also made apparent in a one-page advertisement that the National Youth Commission put in the Cape Argus and The Star, local daily newspapers from Cape Town and Johannesburg, on 15 June 2000. Like Zapiro’s cartoon, this text is published in the context of Youth Day and reproduces Nzima’s photo of Hector Pieterson. The analogy is introduced right at the beginning in the headline ‘The struggle lives on – AIDS is now the focus.’ The main body of the advertisement’s text begins with the exclamations that ‘24 years ago brave young people fought against apartheid and defeated IT! 24 years later there is an unseen enemy attacking youth – HIV-AIDS!’ Drawing on apartheid and especially its eventual abolition, the metaphorical conceptualisation provides an activist outlook. Furthermore, the advertisement’s reference to the old regime creates a sense of unity among readers because apartheid and the resistance movement play an important role in cultural memory. The recurrent use of the personal pronoun ‘we’ supports this group identity because it includes all the readers as well as writers of the text. It calls out to involve and spread the information among ‘our mothers, fathers, brothers, sisters and friends’. With this enumeration of (family) relations, personal networks are taken into account as well. The advertisement wants people to unite and to fight together in this new struggle because any and everybody can contract the virus: ‘HIV-AIDS does not discriminate! It attacks black and white people, young and old, rich and poor. Anyone who engages in unprotected sex is at risk of contracting HIV-AIDS.’ By pointing out the potentially universal risk of infection, the advertisement addresses all South Africans and debunks the popular belief that whites cannot contract the virus. Even though the information is in keeping with medical special discourse, the reality of HIV/AIDS in South Africa is different. According to statistics, the burden of the epidemic is distributed unevenly between different groups of people since HIV

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prevalence is highest among poor, working-class and black people (Shisana et al. 2002, 46-55). The advertisement depicts HIV/AIDS as the enemy in this new struggle, in fact, as ‘an unseen enemy attacking youth’. This invisibility marks a major difference between apartheid and the HIV/AIDS epidemic. ‘We could all see apartheid being enforced at schools, workplaces and wherever we went. We cannot see HIV-AIDS with the naked eye.’ Unlike racial segregation during apartheid, the spread of the virus is not visible and therefore harder to recognise as a risk. The present fight might be more difficult because one can hardly estimate what one is up against. In her poem ‘Nobody Ever Said AIDS’, Eddie Vulani Maluleke presents a similar idea (see p. 44): during apartheid, danger was associated with policemen and Boers, whereas in the era of HIV/AIDS, love relations can paradoxically become dangerous. The ad openly portrays HIV/AIDS as the only enemy. Unlike Zapiro’s cartoon or Pieter-Dirk Uys’s sketch, it does not allow for any criticism of the government’s AIDS policy. This is not so surprising, however, when bearing in mind that the National Youth Commission was established on 16 June 1996 as part of the new government’s plan to develop a strategy to address the challenges facing young South Africans, such as unemployment, crime, poverty and the high incidence of HIV/AIDS. Due to this close connection to the government, critical voices can hardly be expected. With this text the National Youth Commission, instead, advertises its actions and directive. In the top right-hand corner of the one-page advertisement there is a box with an explanation of Youth Day. It reads, ‘Tomorrow, June 16, is National Youth Day, a day set aside by the government to remember the contribution of youth in the struggle against apartheid.’ The inclusion of this background information triggers the question as to whether the old struggle can really be considered an essential element of cultural memory or whether most South African youth are no longer acquainted with the historical context. The struggle metaphor can also draw on larger contexts, as in the case of A Luta Continua, one of the AIDS education films in the Steps for the Future series which deals with a group of activists from Khayelitsha who live with HIV/AIDS and who make short documentary films about their experiences. A Luta Continua combines these clips with footage of the production process and public screenings. Although the film’s title does not name HIV/AIDS explicitly, the topic is implied in the struggle metaphor used in the Portuguese title which translates into English as ‘The struggle continues’. ‘A Luta Continua’ has been the central slogan of Frelimo, the Front for the Liberation of Mozambique. In 1975, when Mozambique became independent from Portugal, Frelimo established a single-party government based on Marxist principles. As the slogan indicates, the struggle continued after independence. Frelimo wanted

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to liberate the people from internal oppression largely based on class differences and feudal structures. Promoting social integration and the concept of a coherent Mozambican nation, the governing party introduced a programme of social reform that covered education, the liberation of women, health issues and the economy (Newitt 2001, 546-50). The ongoing struggle not only affected Mozambique’s internal affairs but also its position as a newly-independent country in southern Africa. With the collapse of Portuguese rule in Mozambique and Angola, the ‘white laager’ of settler territories in southern Africa began to disintegrate. As a response to these geopolitical changes, the South African government under P.W. Botha propagated a destabilisation policy known as the ‘Total Strategy’ (ibid., 560-3; Ross 1999, 164-5). As part of this policy, the South African apartheid regime fuelled the Mozambican civil war (1977-1992) between Frelimo and the anticommunist Mozambican National Resistance (MNR or Renamo) in that it backed and financed Renamo. Although the main objectives of the destabilisation policy have never been clearly stated, some reasons for this involvement can be identified. Firstly, South Africa thought itself confronted with what it considered a ‘Marxist threat’ (Davenport 1987, 500). Secondly, Frelimo actively supported the African National Congress (ANC) and its members in exile. Bordering on South Africa, Mozambique functioned as a major transit station for ANC activists. Thirdly, together with Tanzania, Zambia, Botswana, Angola and Zimbabwe, Mozambique was one of the so-called frontline states. Opposed to the racial segregation in apartheid South Africa, these states were willing to support paramilitary liberation movements if their aims could not be reached peacefully. Fourthly, the South African government tried to prevent the states from gaining economic power. With this aim in view, it was a strategic decision to weaken Mozambique because of its location on the coast. With its title, the film about AIDS activism in South Africa draws on Frelimo’s central slogan, thus suggesting parallels between struggles in Mozambique and South Africa after the end of white colonial rule. In the context of the film, the phrase ‘A Luta Continua’ connotes the fight against the spread of HIV/AIDS and for access to medication. Busiswe Maqungo, one of the film’s AIDS activists, comments on the continuity of struggles when she says, ‘The previous struggle has been won, that is the freedom one. But we still must go on fighting because we haven’t got the real freedom. We are not free yet as long as we are still living with HIV/AIDS and there is nothing done with that.’ Even with the official end of apartheid, the dream of ‘real freedom’ has not come true because people are now held down by the virus. In post-apartheid South Africa, access to medication is still largely shaped by racial categories. When asked why only blacks and not whites contract the virus, one of the activists points out that everybody can be infected and goes on to argue

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that whites have better access to treatment and therefore seem to suffer less from the opportunistic diseases that define AIDS. Mass mobilisation was a high priority for Frelimo; especially the inclusion of women and the working classes was considered essential to the continuity and success of the struggle (Newitt 2001, 542-3). The film can also be read in terms of this policy. The AIDS activists take their short films about living with the virus to shopping malls and taxi ranks in the township. They also discuss HIV/AIDS-related issues such as contraction, prevention, stigmatisation or medication with the black township audience. Screening their stories at public and busy places in the vicinity and talking about the subject matter in English and isiXhosa, the activists ensure that they can reach a large group of people. Since A Luta Continua combines the short films with footage of the screenings and discussions, it thematises the activists’ efforts to raise awareness among the township community and mobilise its inhabitants. In so doing, the activists and the film contribute to the ideas of the Treatment Action Campaign. In fact, TAC features in the film in various ways, showing that the activists support the campaign’s cause. Some of the activists wear ‘H.I.V. POSITIVE’ t-shirts, and the film also includes footage of a TAC rally and press conference with Zackie Achmat. As HIV/AIDS has long been a taboo topic in South African literature and culture, all of these metaphorical realisations are noteworthy attempts to address the issue and to break the culture of silence. Furthermore, the metaphors help to convey complex medical knowledge and give impetus to a public and well-informed discussion about the epidemic. Nonetheless, the representations themselves must be discussed and analysed in a critical manner because they contribute to the cultural construction of HIV/AIDS.

5

Myths

The apparently ‘sudden’ emergence of a ‘new’ and ‘fatal’ disease has given rise to mythifications that shape the social construction and perception of the pandemic. One of the most prominent examples is the naturalised association of the virus with homosexuality (see Chapter 2). Generally speaking, myth is a cultural construction through language, imbued with meanings, connotations and ideologies. In his text ‘Myth Today’, published in his well-known work Mythologies (1957), Roland Barthes explains that myth goes beyond the lexical meaning of a sign and refers to a broader meaning or meta-message. Contrary to the linguistic system in which the connection between signifier and signified is arbitrary, mythical meanings are ‘always in part motivated’ (Barthes 1993, 112) in order to make the myth more effective. Nevertheless, the motivation is fragmentary; it is not ‘natural’ but ‘naturalised’ (ibid., 116). Due to this constructed causality, myth seems to be ‘justified’, to be ‘innocent speech’ (ibid., 118), thereby inviting people to accept it without asking further questions or exposing problems. Myth does not deny things, on the contrary, its function is to talk about them; simply, it purifies them, it makes them innocent, it gives them a natural and eternal justification, it gives them a clarity which is not that of an explanation but that of a statement of fact. (ibid., 132)

My study draws upon and expands Barthes’s work: to explain the relation between myth and its meaning, Barthes speaks of ‘deformation’ or ‘distortion’ (ibid., 108) and his choice of words suggests that there was a ‘myth-free social reality’ which, in myth, is ‘misconceived’ or ‘misrepresented’, implying that there are ‘right’ and ‘wrong’ representations. Following a constructionist approach, however, my study is based on the understanding that myths, like other forms of representation, are created and perpetuated in interdiscourses and special discourses.

The Origin of HIV/AIDS The origin of HIV/AIDS has been imbued with an abundance of meanings because the virus has frequently been coded as coming ‘from the

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Myths 115 outside’ which can either refer to a place – the origin of the virus is mostly attributed to Africa – or to people whose behaviour is considered irresponsible and ‘outside’ the norms of white, Christian, middle-class society. These cultural constructions serve to further prejudices and to reinscribe binary oppositions such as ‘self v. other’, ‘white v. black’, ‘heterosexual v. homosexual’. Phaswane Mpe’s novel Welcome to Our Hillbrow (2001) shows how HIV/AIDS is mythified in its fictional world, mainly because of the stories created by and circulated among the characters. In early 1991, Refentše, a young black man from the rural village Tiragalong in the Northern Province of South Africa, comes to live in Johannesburg to pursue his studies at the University of the Witwatersrand. He moves in with his cousin who lives in Hillbrow, a neighbourhood in the northeast of the central business district of Johannesburg and close to the university, renowned for its dense and multi-racial population, lively street life, poverty, high levels of unemployment, crime and violence. All the characters’ lives are shaped by infidelity and death. Refentše splits up with his girlfriend Refilwe when he finds out that she has had other lovers besides him. Years later, after he completed his studies and is employed as a lecturer at Witwatersrand University, Refentše commits suicide by jumping off a twentieth-floor balcony after he witnesses his girlfriend Lerato’s betrayal with their mutual friend Sammy. Feeling implicated in his death, Lerato also commits suicide and Sammy loses his sanity. Refentše, however, had been unfaithful as well when he had made love to Bohlale, Sammy’s girlfriend, who is subsequently run over by a car. Refentše’s former girlfriend Refilwe, who moves to Oxford to complete her studies, returns to Tiragalong at the end of the novel because she is dying of AIDS. Refentše’s name, which is ‘Sepedi for “we have won”’ (Hunt 2006, 113), can be read as a sarcastic comment on this plot in which all major characters die. Grieving for Refentše (and – to a certain degree – for the other characters as well) the text is reminiscent of an elegy, even if written in prose and not in verse. The reader learns straightaway that at the time of narration the protagonist is dead because the text opens with the phrase ‘If you were still alive, Refentše, child of Tiragalong’ (Mpe 2001, 1), which is repeated with slight variation at the beginning of the second chapter (29). Located on the outside of the narrated world, the unreliable narrator is not involved in the story as a character. Throughout the novel he calls Refentše by his name and addresses him directly in the second person singular, thereby strongly involving the reader who feels spoken to as well. This particular writing style, especially the direct address, is reminiscent of African oral cultures and traditions of story-telling. Only the last two chapters, ‘Refilwe on the Move’ and ‘The Returnee’, which focus on Refentše’s former girlfriend Refilwe, deviate from this second-person narrative.

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Welcome to Our Hillbrow: Creating and Circulating Stories about HIV/AIDS Urban life in Hillbrow is the centrepiece of the story, as the novel’s title suggests. Readers are introduced to everyday life in Hillbrow and are also familiarised with its geography since the grid of streets is portrayed in detail especially in the first chapter, tellingly entitled ‘Hillbrow: The Map’.1 Refentše is fascinated both with the vitality and the dangers of Hillbrow. Spending the first night in his cousin’s flat all by himself, however, his worries and fears dominate, ‘you drifted in and out of these Hillbrow anxieties, with your memory constantly jogging back to Tiragalong with such nostalgia that one would have thought you had not been there for at least a year’ (9). It does not take long for Refentše to get accustomed to life in Hillbrow and soon he insists that he belongs to Hillbrow as much as to Tiragalong so that the narrator starts to address him as ‘child of Tiragalong and Hillbrow’ (29, 30, 36, 38, 41, 47-8, 62). Running through the whole text like a chorus line – another feature of the oral tradition which influences the novel – the phrase ‘Welcome to our Hillbrow…’ is repeated frequently (2, 5, 10, 27, 62, 79), sometimes twice on a single page (2, 79), sometimes with slight changes (68, 104, 120). The reader is introduced and welcomed to this surrounding, to our Hillbrow. Topics included in the novel are migration, discrimination, violence, crime, drugs, HIV/AIDS, poverty, education and the division of urban and rural life because they are part and parcel of everyday life in this neighbourhood. Due to this thematic variety, the literary critic John Hawley considers Mpe’s novel a significant literary achievement which is ‘neither solely focused on AIDS nor awkwardly advancing it as a metaphor for larger social ills’ (Hawley 2004, 43). Welcome to Our Hillbrow explores the epidemic in its complexities, thereby avoiding simplistic or moralising depictions. The representation suggests that ‘large portions of African society have accepted it [the virus] as a permanent feature of their environment and as an issue that must be acknowledged in the same way that crime, drugs, and political corruption are recognized’ (ibid.). Of the topics enumerated above, only some receive attention in the fictional public space of the novel. Although the epidemic is tackled in the novel, its under-representation is also explored. Official radio or television programmes broadcast news concerning crime and violence such as rape, car hijacking and murder (4-5), whereas they keep silent about HIV/AIDS, about the contraction, effects and possible treatment of the virus. Instead, news is spread mostly through stories that make their rounds on ‘the informal migrant grapevine’ (4). Early on in the novel the first of such pieces of gossip is presented: 1

The cartographic representation of Hillbrow stands in the tradition of (literary) images of districts like Sophiatown in Johannesburg or District Six in Cape Town. Hillbrow was declared a ‘whitesonly’ zone under the Group Areas Act of 1950 but since the 1970s it has gradually become a ‘grey’ area, a cosmopolitan residential area for mixed races.

Myths 117 One of the stories that you remember vividly was of a young man who died of a strange illness in 1990, when you were matriculating […]. He died, poor chap; of what precisely, no one knew. But strange illnesses courted in Hillbrow, as Tiragalong knew only too well, could only translate into AIDS. (3)

Much scientific research had been done by 1990 on the contraction and spread of the virus (see Chapter 2), but in the fictional world of the novel – even though the syndrome is identified and referred to with the acronym AIDS – the infection is mythified: it is represented as ‘strange’, as ‘frightening’ and ‘fatal’, thus providing room for sensation and speculation. However, this perception is undermined by the narrator whose attitude towards the myth is conveyed in the quote above through the epistemic modality of the auxiliary verb ‘could’: ‘strange illnesses courted in Hillbrow [...] could only translate into AIDS.’ He attributes the alleged diagnosis of ‘unknown’ diseases to presuppositions about Hillbrow rather than to critical examination and medical knowledge. He thereby questions the reliability of the information distributed through the stories. This introduction of the syndrome on the third page sets the tone for the rest of the novel because the virus is represented in myths which are circulated by the characters and (indirectly) criticised by the narrator who exposes them as constructions. As a fictional text, Welcome to Our Hillbrow allows for this ambiguity, for a variety of opinions and for indirect comments and evaluations. The complexity of perspectives becomes evident in the miseen-abyme structure of the novel. Refentše explores the virus and its social, psychological and physical effects through writing. While he decides to ‘produce at least one novel, or a semblance of one, based on [his] impressions of Hillbrow’ (30), he ends up writing a short story about one particular aspect of Hillbrowan everyday life, HIV/AIDS. As readers of Welcome to Our Hillbrow, we are not presented with his manuscript but learn only indirectly about the story’s plot. His protagonist is an HIV-positive woman from Tiragalong who is in her third year of a Bachelor of Arts degree. In order to finance her studies she works ‘in the kitchens’ (56), as the white suburbs of Johannesburg are often called because many black women earn money there by doing household work. Introduced as a black woman, maid and student, her identity is created through broad categories. As she is not given a name, she is not individualised but can be read as a representative of South Africa’s urban population. When – for whatever reasons – her infection becomes public, the villagers of Tiragalong discriminate against her. Believing that she contracted the virus by sleeping around, they claim that ‘she deserved what she got’ (54). In his short story, Refentše is careful to point out sexual intercourse as the most likely route of transmission. He does not give room to any speculations that

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foreigners can be blamed for her infection or that she has fallen victim to witchcraft. Not only does his short story deal with the contraction of the virus and subsequent stigmatisation; it also portrays the AIDSinflicted body of his main character when Refentše draws attention to her weight loss.2 Showing AIDS-related symptoms, she becomes the subject of local gossip. ‘Those who met her in the city […] said that she was so thin, her clothes were simply hanging on her bony frame. She would have made a better scarecrow than the real ones […], they said’ (58). As in this quote, various forms of the verb ‘to say’ are repeated throughout the novel, emphasising that information on HIV/AIDS is spread orally through gossip and stories. Refentše criticises the villagers because ‘they did not realise that they were the sources of her scarecrow state’ (58). In an attempt to flee stigmatisation and ostracism, the protagonist of his story decides not to return to Tiragalong anymore. Her plan fails, however, as she has to discover that ‘a conscious decision to desert home is a difficult one to sustain. Because home always travels with you, with your consciousness as its vehicle’ (55). Since she cannot escape she comes up with another resolution, namely ‘to pour all her grief and alienation into the world of story-telling’ (55). Narrative agency is her strategy to deal with the epidemic; she takes to ‘novel-writing as a sanctuary’ (58), like Mpe himself. Interviewed by Lizzy Attree, Phaswane Mpe states that he started Welcome to Our Hillbrow in a ‘moment of depression’ (Attree 2005b, 139) and used ‘writing as therapy’ (ibid., 141). This method of ‘Healing with Words’, to quote from the title of the interview, is also employed by the main character in Refentše’s short story when she starts to write a novel about her own experiences, ‘about Hillbrow, xenophobia and AIDS and the prejudices of rural lives’ (55). The structure of Welcome to Our Hillbrow with its story within a story within a story illustrates that HIV/AIDS pervades the text: it is dealt with on every fictional level, in Mpe’s novel, in Refentše’s short story and in the novel written by his female protagonist. Such duplicated – in fact even triplicated – representation can be identified as a literary strategy to stress the omnipresence of HIV/AIDS. Phaswane Mpe’s Welcome to Our Hillbrow was published to wide critical acclaim, both nationally and internationally. It was shortlisted for the Sunday Times Fiction Award 2002 and the Sanlam Literary Award for Fiction 2001; and around the world it has been added to the syllabi of (university) courses on (South) African literature. His fictional characters, however, are less successful as writers. Refentše manages to have his short story published but is not, as it turns out, satisfied with the result. 2

In combination with weakness and chronic diarrhoea, the loss of body weight and muscle mass is an often experienced manifestation of AIDS in Africa so that the syndrome has been nicknamed ‘Slim’ or ‘Wasting Syndrome’, see Hooper (1990) and Horn (2001).

Myths 119 Euphemism. Xenophobia. Prejudice. AIDS. You wrote your story to think through all these issues, child of Tiragalong and Hillbrow. But your story was neither long nor sophisticated enough. You realised when it was published that it would never be sufficient. You became keenly aware that no matter what other stories you might write, none of them would ever be sufficient to answer such imponderables. (60)

Refentše believes that he did not reach his goal. The topics seem too encompassing to be dealt with satisfactorily in a short story. The woman in his story writes a novel which might solve this problem because a book provides more room for discussion; yet she does not succeed, either, because the publishers do not accept her manuscript. She is very disappointed, especially since she thought of writing as a way of coming to terms with her experiences. For her, writing does not, as she hoped, have a cathartic effect but results in ‘grief and bitterness when the sanctuary proved to be too fragile’ (58). The publishers’ rejection adds to the character’s burden of being excluded from the village’s community so that, in the end, she becomes the scarecrow people talk about. The narrator of Welcome to Our Hillbrow explains that the novel is declined because of the language – the novel is written in Sepedi3, not in English or Afrikaans – as well as the topic she addresses, namely HIV/AIDS implying sexuality and the body. She did not know that writing in an African language could be such a curse. She had not anticipated that the publishers’ reviewers would brand her novel vulgar. Calling shit and genitalia by their correct names in Sepedi was apparently regarded as vulgar by these reviewers […]. They considered it fine, for instance, to call genitalia by their correct names in English and Afrikaans biology books – and even gave these names graphic pictures as escorts – yet in all other languages, they criminalised such linguistic honesty. (56)

With his sarcastic comments, the narrator openly criticises the reviewers for dismissing the novelist’s writing as ‘vulgar’. He suggests that they do not appreciate the novel for its own merit; instead, their criticism is informed by unvoiced presuppositions about the perceived inferiority of African languages and literatures. This ideological legacy of colonialism and apartheid can account for the evaluation, but to a certain extent only. After all, the reviewers do not classify her text as ‘inferior’ but as ‘vulgar’; this criticism can be read against the history of racial stereotypes. Not only relevant to the analysis of this particular text passage from Welcome to Our Hillbrow, racial stereotyping also shapes the mythification of HIV/AIDS in general. 3

Sepedi is a dialect of the Sotho language of the Bantu family. Sometimes it is also referred to as Northern Sotho even though this term is more inclusive because it refers to all the dialects of the Sotho language, not only Sepedi. Sepedi is recognised as one of South Africa’s official languages. It is spoken mostly in the provinces of Limpopo, Mpumalanga and Gauteng.

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Stereotypically, blacks are considered to show ‘immoral’ behaviour, apparent in what is thought to be their ‘excessive’ and ‘uncontrollable’ sexuality. This projection is of significance to the cultural construction of HIV/AIDS because sexual intercourse is the most likely transmission route of the virus. The stereotype derives from an explanation of the genealogy of the different skin colours, based on a by now common interpretation of the Bible. Blacks are regarded as successors of Ham who looks at his naked father when he lies in his tent drunk. Ham tells his brothers about this incident and they enter the tent averting their gaze in order to cover Noah’s nakedness. When Noah wakes up and learns about what happened he punishes Ham for his misdeed, his lack of respect. In perpetuity Ham shall be ‘a servant of servants […] unto his brethren’ (Genesis 9.25) and Ham’s offspring shall have a black skin. When Noah divides the earth among his children, Ham receives Africa. The punishment is based on Ham’s morally questionable behaviour because he breaks a sexual taboo. Ham is the biblical figure traditionally understood as the progenitor of the ‘black’ nation. Blackness, that is race, as an operative category, becomes a further means of drawing the boundaries between permitted and forbidden sexuality. Ham is condemned because he looked upon his father’s nakedness. His gaze rested upon the genitalia of his father, upon the origin of his progeneration but also the mirror of his own sexual identity. (Gilman 1989, 29)

Black skin is devalued because it is read as a sign of transgression and sinfulness, of immoral and overtly sexual behaviour. As a black author who writes about HIV/AIDS, the woman of Refentše’s fiction is, if only indirectly, also confronted with this stereotype. The identity and cultural inscriptions of Ham (and his brothers), however, are constructed and contingent, as the American historian Benjamin Braude stresses. He exposes the ‘wilful Africanization of Ham’ (Braude 1997, 120) which is based on a series of misreadings of the Bible story. Before Gutenberg invented the printing press ‘content and meaning of a biblical genealogy […] were much more variable than in post-print Europe’ (ibid., 107). In biblical references in sources from the middle ages, the story of Noah and his sons is presented differently. Ham and his brothers are not linked with particular continents but inhabit overlapping regions of the world (ibid., 110). In the earliest manuscript of the Travels of Sir John Mandeville, completed in 1371 in medieval French and one of the most widely read texts of its time, Ham is awarded Asia, his brother Japhet Europe and Shem receives Africa (ibid., 116). While some sources identify Ham as African, he is not portrayed as black but as white, as are his brothers (ibid., 121). In the course of later centuries, however, Braude notices a shift in paradigm which he attributes to the European contacts with West Africa, the

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increase in slave trade and the promotion of racism. By the nineteenth century the link between Ham, Africa and black is so deeply inscribed in the European view of the world that the connection has since been accepted as the ‘correct’ reading of the Bible (ibid., 119). The interpretation has come to be so well-established that it seems ‘natural’. Both the supposed inferiority of African languages and the stereotypically immoral behaviour of blacks can serve as frames of reference to explain why Refentše’s protagonist is shown to encounter difficulties in publishing her Sepedi novel on a sexually transmitted infection like HIV/AIDS. Competing Theories on the Origin of HIV/AIDS Special discourses also produce and perpetuate cultural constructions of the virus. Although disguised as ‘neutral’ and ‘innocent’ statements, the scientifically accepted theories about the origin of HIV/AIDS in Africa can also be discussed in terms of myths. In the sciences, research is based on figures, tests and experiments, thus appealing to standards of reliability and validity. However, among others, the Australian sociologist Brian Martin voices his scepticism about this perception of research, pointing out that it is not guided by logic and reason only, but also influenced by political agendas and presuppositions. Given that facts are in part dependent on theories, that unwelcome facts can be challenged or dismissed, that theories can be maintained despite discomforting evidence, and that many scientists are highly committed to their preferred theories, there is an abundance of evidential, conceptual and psychological resources for waging scientific disputes, not to mention material resources including laboratories, salaries and publishers. (Martin 2001, 940)

Because of gaps and uncertainties in the scientific explanation of the origin of HIV, competing theories about the origin of HIV/AIDS could rise; and these show how observations are interpreted in different ways and used to create myths about the virus. Although AIDS was first reported in the USA in 1981, many medical scientists have come to believe that the virus had been active in Africa for at least twenty years. Earlier cases from Africa in the 1960s and 1970s, which had gone undiagnosed, could be identified in retrospect. Because of these findings, HIV/AIDS is often thought to have originated in central Africa and then to have spread to other parts of Africa and the world until it finally reached the so-called ‘First World’, the USA and Europe (de Waal 2005, 221-2; Meredith 2005, 362-7; Sontag 1990, 150). The spread of HIV/AIDS is commonly explained as follows: the virus stems from Rwanda, Burundi and Congo-Kinshasa (today’s Democratic Republic of the Congo); it spread to other African countries especially during wars (for example, the Ugandan-Tanzanian War between 1978

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and 1979); it reached Haiti through educational technicians, working for the UNESCO in Congo-Kinshasa between 1960 and 1975, returning regularly to Haiti on holiday; migrant workers brought the infection from Haiti to the Caribbean and homosexual tourists, in turn, to the United States (Vangroenweghe 2001, 925). This sequence of events is, as Cindy Patton argues, based on racial and racist ideas. When the West found itself beset by a deadly little virus of unknown origin, it sought the source elsewhere; nothing of this sort, it was argued, could have arisen from the germ-free West. So the best research minds of the Western world set off on a fantastic voyage in search of the source of AIDS. (Patton 1990, 83)

Through her sarcastic overtones, Patton unmasks and highlights the bias that informs this theory. Researchers were committed in advance to the hypothesis that HIV did not originate in ‘the germ-free West’ but in Haiti or Africa. Susan Sontag argues along similar lines, stressing the racist implications of the inquiries. ‘Africans who detect racist stereotypes in much of the speculation about the geographical origin of AIDS are not wrong. (Nor are they wrong in thinking that depictions of Africa as the cradle of AIDS must feed anti-African prejudices in Europe and Asia)’ (Sontag 1990, 140). Scientists create a special affinity between the infection and Africa; they construct HIV as an African virus. Yet this is neither the first nor sole example of an ‘Africanisation’ of an illness. Following the ‘classic script for plague’, AIDS is regarded as coming from somewhere else, as yet ‘another infestation from the socalled Third World’ (ibid., 139). This signification process is informed by colonial ideologies. Like the plague, the virus is mythified and used to uphold global power imbalances. Not a mere medical condition, HIV/AIDS functions as a cultural projection of racist stereotypes, contributing to the discursive marginalisation of Africa and Africans as ‘other’. This depiction of the epidemic is in keeping with a generally negative image of Africa. While Africa was considered a ‘mysterious place, but often viewed positively’ (Hall 1997c, 239) in the middle ages, the ambiguous perception is exchanged for a more negative one in the nineteenth century when Europeans created the image of the ‘dark continent’ to justify their exploration and colonisation of Africa. Declared the descendants of Ham, Africans were identified with nature and sexuality; they became symbols of ‘primitive barbarians’ in contrast to the ‘civilised world’. The binary oppositions of ‘culture v. nature’, ‘superior v. inferior’, ‘white v. black’ have shaped global power structures and have had an impact on theories about HIV/AIDS in which scientists, academics, politicians, journalists and others produce and propagate myths. The idea of ‘African AIDS’ is one such example of how the construction of meaning oversimplifies the situation (Watney

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1990, 94). Even though many countries in Africa are (strongly) affected by the virus, every country has its own epidemic with its cultural, social, political and economic particularities. However, the umbrella term ‘African AIDS’ denies the continent’s diversity and creates an unrealistic unity which would be unacceptable for Europe or the United States.4 The notion of ‘African AIDS’ is a projection which follows, as Simon Watney argues, the reasoning of racial difference and racism. ‘The construction of “African AIDS” tells us much about the West, and its major strategies of self-knowledge, rooted in systems of difference and Otherness. But even more importantly, it serves to justify and validate the continued, genocidal indifference to the longterm consequences of HIV infection amongst people of colour’ (ibid., 95). While ‘African AIDS’ says little about the African epidemic, it says much about those who create, perpetuate and benefit from this construct because the virus is being used to solidify dichotomies and power relations. In Africa, by comparison, the hypothesis that the virus can be traced back to its origins in Africa is challenged and turned on its head. ‘Many doctors, academics, journalists, government officials, and other educated people believe that the virus was sent to Africa from the United States, an act of bacteriological warfare (whose aim was to decrease the African birth rate) which got out of hand and has returned to afflict its perpetrators’ (Sontag 1990, 140). Further popular explanations of the cause of the epidemic are informed by a similar mindset: ‘“white doctors” who inject patients with AIDS when they go for tests; the CIA and pharmaceutical companies who want to create markets for drugs in Africa; the use of Africans as guinea pigs for scientific experiments with AIDS drugs’ (Robins 2004, 654). While these conspiracy theories present a counter-reaction to the western-centred perspective, the virus is still signified through myths. Powerful people – whites, Europeans and Americans – are blamed for the deliberate fabrication of the virus as a means to scare (black) Africans away from sexual intercourse and reproduction in order to reduce their number and to further their marginalisation. Paying tribute to the prejudices and racism (black) Africans are faced with, this assumption is illustrated in a ridiculing translation of the acronym AIDS which is said to mean ‘American Invention to Discourage Sex’ (Ashforth 2002, 124). This lampooned explanation works along the same lines as the slogans by some antiapartheid activists, in which AIDS was blamed on the apartheid government. People also suspected that Wouter Basson, head of the chemical and biological weapons programme of the apartheid regime, 4

Problematising the simplistic construction of a homogenous ‘Africa’, Patton uses the equivalents ‘North America’ and ‘Euro-America’ to indicate the collection of relatively homogenous Northern administrative states, wanting her readers to ‘take note of their discomfort at having their cultural space discursively reduced in this way’ (Patton 1990, 78).

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collaborated with the American scientists to invent the virus (Nattrass 2012, 16-19). Regardless of the specific context, the signification of HIV/AIDS is thus used to reinforce social dichotomies of ‘white v. black’ and ‘African v. European/American’. What all of these cultural constructions share is ‘the image of AIDS and HIV coming from “the outside” to infect hitherto healthy persons or populations’ (Benson 2002, 153). Depending on the perspective, ‘outside’ here refers to either Africa or America; and this sense of absolute difference is created and perpetuated in both positions. Sander Gilman brought forward an argument on diseases in general that, when applied to this context, can help to analyse why HIV/AIDS is represented in this way. ‘We need to locate the origin of a disease, since its source, always distant from ourselves in the fantasy land of our fears, gives us assurance that we are not at fault, that we have been invaded from without, that we have been polluted by some external agents’ (Gilman 1988, 262). Tracing the virus to a source in the distance means to free oneself of the responsibility and consequences linked with the infection; instead, the ‘other’ is blamed. Coming from the ‘Outside’: Place Myths surrounding the origin of HIV/AIDS feature prominently in Welcome to Our Hillbrow. According to the general opinion in the fictional public realm, black foreigners from other African countries are responsible both for causing and spreading the virus. The foreigners are made scapegoats for almost all social problems in South Africa such as unemployment, violence and crime; the epidemic is just one issue blamed on them. Regarded as inferior they are looked down upon and derogatively referred to in the novel as Makwerekwere, a slang word ‘derived from kwere kwere, a sound that their unintelligible foreign languages were supposed to make, according to the locals’ (20). The linguistic difference is used by the South African characters to create a binary opposition between their own and the other supposedly ‘unintelligible’ languages, between themselves, ‘the locals’, and the foreigners, thereby setting themselves apart from the immigrants. However, the etymology of the word Makwerekwere is contested. It is also said to be an attempt to reproduce the twittering of queleas, small migratory birds native to eastern and southern Africa, which, similar to locusts, fly in large groups and devastate the harvest (Nixon 2001, 29). This explanation establishes a metaphoric connection between queleas and ‘foreign Africans’, both of which are thought to travel in large numbers to other countries where they find a better life at the expense of the locals. Despite the ambiguous etymology, these examples show that South Africans’ prejudices and racism towards black Africans have found their way into language. With the help of this collective name, a certain group of immigrants is identified and marked as ‘different’ from South Africans.

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The binary opposition ‘South Africans v. (black) Africans’ runs through the novel. It does not go uncriticised since Refentše unmasks such polarity as a construction, especially in his frequent arguments with Cousin who remains nameless throughout the novel and can therefore be said to function as a mouthpiece of public opinion. Like many other South Africans, Cousin blames Makwerekwere for the social problems of life in Hillbrow. In their quarrels, Refentše accuses him of ‘being a hypocrite’ (17) because his ‘vocal support for black non-South African [football] teams, whenever they played against European clubs, contrasted so glaringly with his prejudice towards black foreigners the rest of the time’ (17). Refentše sees his cousin as caught up in contradictions because, depending on the circumstances, Cousin’s categorisations change. In general, he identifies himself as South African and considers immigrants from other African countries as ‘other’; in other contexts such as international football games, however, Europeans take the place of Makwerekwere. Still, in everyday life Cousin insists ‘that people should remain in their own countries and try to sort the problems of the respective countries, rather than fleeing them; South Africa had too many problems of its own’ (20). This issue is often a subject of discussion and disagreement because Refentše does not share his cousin’s point of view. ‘Many of the Makwerekwere you [Cousin] accuse of this and that are no different to us – sojourners, here in search of green pastures’ (18). Refentše shows the immigrants in a different light when he compares them to himself and his cousin, thereby overcoming entrenched dichotomies which distinguish between ‘us v. them’, ‘self v. other’. Like themselves, immigrants come to South Africa, to Johannesburg, to Hillbrow, hoping to find a better life. Furthermore, they have not come to stay for good but for a limited period of time only, as the term ‘sojourn’ suggests, comparable to South Africans who found refuge in other countries during the apartheid regime. ‘You [Refentše] would want to add that some Makwerekwere were fleeing their war-torn countries to seek sanctuary here in our country, in the same way that many South Africans were forced into exile in Zambia, Zaire, Nigeria and other African and non-African countries during the Apartheid era’ (18-19). The narrator emphasises that Refentše takes notice of similarities between South Africans and the immigrants, reducing the prejudices and discrimination against black non-South Africans. None of these conversations is given in direct speech. Instead, they are recollected by the narrator who recounts Refentše’s and Cousin’s arguments. He does this by addressing Refentše with phrases like ‘you would challenge’ (17), ‘you would want to add’ (18), ‘Cousin would not agree with you’ (20). The use of the modal verb ‘would’ indicates that Refentše and Cousin are most likely to have had such discussions regularly. Their arguments – presented by the narrator – are basically

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the same in every debate, which is why they are not presented in direct speech as it might prioritise one particular incident. Instead, the narrator uses modal verbs to convey the repetitiveness of the discussion. Due to this writing style and the lack of quotation marks, it is not always obvious whose comments are being presented: it could be the narrator who addresses Refentše throughout the novel as ‘you’, but the pronoun can also refer to Cousin because Refentše is talking to him. Even though it is possible to avoid confusion by reading the text closely, this presentation has the effect of stressing the content of the conversation, regardless of the speakers involved. Welcome to Our Hillbrow thus provides general perspectives and judgements, not just opinions of particular fictional characters. Moreover, the border between recollected conversations and thoughts also gets blurred. For example, Refentše ‘would want to add’ (18) details relating to similarities in history between immigrants and South Africans, but later the readers find out that he ‘would, usually, however, spare Cousin these historical details’ (19). Thus, a passage which at first reads like Refentše’s comments to Cousin turns out to be the narrator’s description of Refentše’s attitudes and thoughts. In passages like these it becomes clear that the narrator hardly mediates between the characters and the readers. Implicated in this second-person narrative and faced with a variety of perspectives, the readers are not encouraged to rely on the narrative, they have to form their own opinions. In most cases, Refentše has given up explaining his position again and again since Cousin is well aware of his arguments but still not convinced. ‘Cousin would always take the opportunity during these arguments to complain about the crime and grime in Hillbrow, for which he held such foreigners responsible; not just for the physical decay of the place, but the moral decay’ (17). HIV/AIDS is not explicitly named in this quote, but immigrants are made responsible for the ‘moral decay’ which can also include the spread of the virus. Even though Cousin’s arguments are presented, it is made clear that this opinion is not just that of a single character. The text spells out explicitly that Cousin’s attitude and ‘words were echoed by many others’ (17). Again, Refentše does not agree. ‘It was your opinion that the moral decay of Hillbrow, so often talked about, was in fact no worse than that of Tiragalong’ (17). Not calling into question the ‘moral decay’ as such, he still makes clear that he does not hold foreigners accountable. It is as much a problem among the villagers of Tiragalong as in Hillbrow with its diversity of inhabitants. In other text passages, both origin and spread of HIV/AIDS are openly attributed to Makwerekwere: This AIDS, according to popular understanding, was caused by foreign germs that travelled down from the central and western parts of Africa.

Myths 127 More specifically, certain newspaper articles attributed the source of the virus that caused AIDS to a species called the Green Monkey, which people in some parts of West Africa were said to eat as meat, thereby contracting the disease. Migrants (who were Tiragalong’s authoritative grapevine on all important issues) deduced from such media reports that AIDS’s travel route into Johannesburg was through Makwerekwere; and Hillbrow was the sanctuary in which Makwerekwere basked. (4)

This quote evinces the tendency of South Africans – and Cousin is only one of them – to discriminate against black immigrants from other African countries, as they are made responsible for HIV/AIDS. They are blamed for bringing ‘foreign germs’ which allegedly stem from the ‘Green Monkey’, a long-tailed monkey species living in sub-Saharan Africa, to South Africa, to Johannesburg and particularly to Hillbrow. The origin of the virus is attributed to central and west Africa and thus used to justify and further South Africans’ xenophobia. The prejudices encountered by the Makwerekwere in the novel are rooted in South African history: during apartheid, action could be taken against ‘foreign Africans’ under the immigration laws such as the Aliens Act (1937) or the Admission of Persons to the Republic Regulations Act (1972), which was amended by the Aliens and Immigration Amendment Act of 1984 (Cameron 2005b; Omond 1986, 127, 209). The stigmatising and discriminating quality of these laws is depicted in the choice of words for non-South Africans, ‘Aliens’, and the definition of the term ‘foreign Africans’ which referred to people from neighbouring African countries and to blacks from the Bantustans.5 The Admission of Persons Act prevented Africans who were considered ‘undesirable’ from entering South Africa; and people who became ‘undesirable’ could be removed. In the 1980s after the first cases of HIV/AIDS were diagnosed, these laws were used in an attempt to control the virus. Non-South Africans living with HIV/AIDS, especially migrant workers who had often been discriminated against, could be deported on the basis of the amended regulations. Meeting with the opposition of civil-rights activists, the coercive measures ‘became almost instantly unenforceable’ (Fourie & Meyer 2010, 65), and were officially abolished when the Aliens Control Act (1991) came into force. From then on, a person could no longer be rendered ‘prohibited’ on the basis of HIV/AIDS (Cameron 2005b). Contextualising the HIV/AIDS epidemic, Susan Sontag points out that ‘[e]pidemic diseases usually elicit a call to ban the entry of foreigners, 5

Under apartheid, certain parts of South Africa were designated as so-called ‘homelands’ for Africans; some of which were eventually declared independent states but not recognised as such internationally. The Afrikaner government determined that the Africans belonged to one of the following groups: Ndebele, North Sotho, South Sotho, Swazi, Tsonga, Tswana, Venda, Xhosa or Zulu. Considered citizens of separate countries within the borders of South Africa, Africans were treated as ‘foreign’, not as ‘South African’. As a consequence of this policy, they could be deported and were forcibly removed. As many blacks as economically feasible were to ‘return’ to the allotted regions of their ethnic groups (Omond 1986, 110-21; Ross 1999, 135-7).

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immigrants. And xenophobic propaganda has always depicted immigrants as bearers of disease’ (Sontag 1990, 150). Although the novel’s representation of the origins of the virus might read like xenophobic propaganda, it is in keeping with the theory most commonly supported in medical discourse. HIV is described as closely linked with the simian immunodeficiency syndrome (Marx 2001, 331; Nattrass 2012, 28-31) that was detected in different species, among them the African green monkeys in west, central and east Africa. The transfer of the virus from apes to humans might have been possible by any of several ways, ‘a hunter butchering a monkey and getting blood from it into a cut, a monkey biting a human or a person eating undercooked monkey meat’ (Martin 2001, 939). While this transfer is thought to be the basis of the human-to-human transmission of HIV, there have been numerous other theories about the origin and spread of the virus, as indicated above, which challenge this established view. In his research, Brian Martin noticed that different hypotheses have been treated differently. While the so-called ‘cut-hunter theory’ has not been examined very closely because it carries the onus of proof, competing ideas, especially the vaccination hypothesis, according to which HIV/ AIDS was spread during mass vaccination campaigns in Africa in the late 1950s, have been subject to intense criticism. Martin comes to the conclusion that the difference in critical reception does not go back to scientific methods but results from non-scientific factors. The vaccination theory has met with far more disapproval because it is threatening to the image and reputation of science; it stigmatises medicine for causing AIDS and it reduces public trust in vaccinations (ibid., 942). Committed in advance to the hypothesis that medicine cannot be blamed for the creation and spread of the virus, researchers have never thoroughly scrutinised this theory. Since the cut-hunter theory is well established in scientific discourses and hardly leaves room for challenging ideas, it is not surprising that it is also dealt with in literature, as in Welcome to Our Hillbrow and its representations of (the source of) HIV/AIDS. The production of myths about immigrants as bearers of a disease is not limited to HIV/AIDS. As Susan Sontag points out, xenophobic propaganda and myth-making have a long history: in the late nineteenth century foreigners were stigmatised as bearers of cholera, tuberculosis, typhus and yellow fever (Sontag 1990, 150). The stigmatisation of immigrants is not limited to a certain country, either, since racism, xenophobia and prejudices against people from ‘the outside’ are not limited to South Africa. Welcome to Our Hillbrow also explores the promotion of fear and racism in Great Britain. HIV/AIDS as a Global Pandemic Even though the focus lies on the South African context, the final chapters of the novel also consider AIDS in Europe. After completing

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her Bachelor of Arts in English and Sepedi, Refilwe, Refentše’s former girlfriend from Tiragalong, decides to do her Master’s degree in Publishing and Media Studies in Oxford, England, rather than applying at Witwatersrand University. Arriving ‘in our England in the new millennium’ (101), she encounters, if not personally, discriminating behaviour of the customs officials at Heathrow Airport in London against Africans, especially Nigerians and Algerians. Seeking evidence to confirm the general suspicion that ‘they were all drug dealers, or arms smugglers, engaged in trading weapons for their civil warwracked countries’ (101), the officials turn the luggage of the African passengers inside out. Similar to black immigrants in South Africa, Africans are faced with prejudices in England. Refilwe ‘learnt there, at our Heathrow, that there was another word for foreigners that was not very different in connotation from Makwerekwere [...]. Except that it was a much more widely used term: Africans’ (102). Generally speaking, ‘Africans’ is a lexeme which denotes people from the African continent; in this context, however, especially the connotations of the word prevail. Heathrow and Hillbrow are linked in their fear of the foreign. ‘Our Heathrow strongly reminded Refilwe of our Hillbrow and the xenophobia it engendered’ (102). Describing both Heathrow and Hillbrow with the personal pronoun ‘our’, the narrator sarcastically connects the characters and readers with these two places. The binary oppositions ‘Europe v. Africa’, ‘us v. them’, ‘self v. other’ are challenged, as are the stereotypes connected with this distinction. ‘Hillbrow in Hillbrow. Hillbrow in Cape Town. Cape Town in Hillbrow. Oxford in both. Both in Oxford. Welcome to our All…’ (104). Here it becomes obvious that xenophobia and myths are essential components of everyday life in Hillbrow and can just as well be encountered in Cape Town and Oxford. ‘Welcome to our All…’ – the elision opens up space to represent many other places in the world, highlighting that social concerns are not territorially fixed. Nonetheless, to come from South Africa is not the same as to come from Africa, as Refilwe learns at the airport and during her stay in Oxford. South Africans are met with far less suspicion than people from other African countries. The favourable treatment cannot simply be explained by the fact that South Africa used to be a British colony since that would also be true of immigrants from other countries in Africa such as Kenya, Nigeria, Sudan or Zimbabwe. It has to do with the public perception of South Africa, which has been viewed very positively since the end of apartheid. ‘South Africans, black and white, were very fine people these days, thanks to the release of Rolihlahla Mandela from Robben Island in 1990 and his push for the 1994 democratic elections. Was that not a miracle!’ (100) As he does repeatedly throughout the novel, the narrator voices his own opinion by using ironic overtones and thus qualifying his own narrative. He is

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sceptical whether such praise of a single person is justified. ‘These and other such laudatory noises appeared forgetful of the fact that Mandela was not the only player in this game of politics’ (100). Critical of the superficial and idealised understanding of South African history, the narrator indirectly questions the privilege South Africans enjoy in England. Unlike other Africans, they do not have their ‘passports […] scrutinised, signatures checked, double checked and triple checked’ (102) and they do not have to register with the police. HIV/AIDS, or rather stereotypes about the virus and its origin, play a major role in this difference in treatment. Africans are held responsible, as the narrator points out, for the spread of the infection and for illnesses in general. ‘These Africans from the West were the sole bringers of AIDS and all sorts of other dirty illnesses to this centre of human civilisation’ (101-2). Africans are perceived as ‘primitive outsiders’ who are accused of bringing diseases to Great Britain, to the ‘inside’, ‘to this centre of human civilisation’. Through his exaggerated and ironic description, the narrator uncovers the underlying ideological imperatives of racism and colonialism. In so doing, he de-naturalises the myth; he creates a distance and ridicules the alleged threat the ‘dirty and infected other’ poses to the ‘civilised world’. In the novel, Africans are not banned from entering Great Britain, but they are put through lengthy medical tests on their arrival. South Africans, however, can simply fill in a form. ‘Yes I saw a doctor before I left, and no, I am not HIV-friendly…’ (101). This confirmation says more than that the person took a test which was negative. The neologism ‘HIV-friendly’ is coined to signify people’s attitude towards those living with HIV/AIDS, stressing that the person in question is neither HIV-positive nor supportive of infected people. Refilwe’s time in Oxford is presented with a strong sense of foreboding. Although she is a young and apparently healthy woman, her death is foreshadowed. When she recommends Ways of Dying, an acclaimed novel by the South African writer Zakes Mda, to a friend, the narrator comments that, at that point in time, ‘Refilwe could not have known that her family would soon have cause to mourn on her behalf’ (108). The novel deals with Toloki who works as a professional mourner. He is paid to attend funerals in townships and to mourn for the dead. Through this intertextuality the tone is set for Refilwe’s death. In Oxford, Refilwe meets a young Nigerian who closely resembles the late Refentše. The Nigerian is therefore referred to as ‘the stranger-whowas-not-a-stranger’ and ‘stranger-whose-face-was-Refentše’s’ (110); he is not given a proper name. Like Refilwe and Refentše before, they fall in love with each other. When ‘her Nigerian had learnt about his illness, he had bid Refilwe goodbye in order to go and waste away at home, in Nigeria’ (115). Even though AIDS is not made explicit, the diagnosis is suggested by the choice of words: the expression ‘waste away’ is typically used to describe the symptoms of AIDS because people start

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losing weight rapidly. Refilwe, too, is diagnosed with AIDS. Like her lover, she starts losing weight and, in the end, she comes to resemble the scarecrow of Refentše’s fiction (120). Refentše’s short story has always had a great impact on Refilwe; reading the story enables her to look at life from a different angle and makes her rethink her own attitudes, prejudices and behaviour. As she is diagnosed with AIDS, the connection between Refilwe and the woman in Refentše’s short story is deepened. Refilwe and her lover think about returning together to either Nigeria or South Africa but ‘he did not want to become someone else’s burden’ (115), and Refilwe ‘wanted to die here at home, to be buried in the sunscorched lands of the Northern Province’ (116). For this reason, Refilwe returns to her home village by herself. She is welcomed, but behind her back the villagers talk about her so that Refilwe has to cope with gossip, prejudices and ostracism, like Refentše’s heroine. She experiences difficulties in facing her friends, family and community because ‘they all judged her to be just a loose pair of thighs with voracious appetite – thighs in search of wandering penises to come and caress them’ (116). In Refilwe’s case, villagers could easily jump to the conclusion that her Nigerian lover, as one of the hated Makwerekwere, infected her. This reading seems to be promoted in the novel because her lover is not given a name but repeatedly characterised via his Nigerian nationality. However, the novel clearly breaks with such xenophobic presuppositions. The narrator calls him ‘our Nigerian brother’ (119, 122) and by using the pronoun ‘our’ and the noun ‘brother’, he overcomes assumed differences and establishes a close connection between the South African and Nigerian characters. Moreover, he unmasks the stereotypes about Makwerekwere as bringers of HIV/AIDS because he states explicitly that both Refilwe and the Nigerian have been HIVpositive for many years. Given the long latency period of the infection, it does not come as a surprise that neither of them knew of their HIV status. While we as readers do not learn anything about the Nigerian’s background which might compromise his reputation, we know about Refilwe’s past. She used to be Refentše’s girlfriend in Tiragalong until he found out that she betrayed him with others. Refentše accused her of ‘open-thighedness’ (32) and considered it ‘absolutely despicable to be so sexually loose’ (34). The narrator, however, undermines Refentše’s moralising stance by pointing out that he has since had ‘occasion to rethink [his] self-righteousness’ (34), because he in turn betrays his friend Sammy when he has sexual intercourse with Sammy’s girlfriend Bohlale. Cracks in Refentše’s judgement on Refilwe begin to show and Refentše himself loses credibility. Willing to forgive her, he later asks himself, ‘Surely in her act of betrayal, she had merely done what all human beings are capable of doing?’ (34). Moralistic and condescending

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accusations of Refilwe are not given much space or authority in the novel but are exposed as simplistic. Although Refilwe and the Nigerian live in England when they are diagnosed with the syndrome, HIV/AIDS is not explored as an English (or British or European) topic but still exclusively discussed in connection with Africans. The description of Refilwe’s experiences at Heathrow and in Oxford serves to show that the same myths and stereotypes operate in England. British immigration policy and the treatment of Africans at the hands of the custom officials reinscribe the myth that HIV/AIDS comes ‘from the outside’, equalling ‘Africa’. Susan Sontag argues that this utilisation of AIDS is very common in Europe and the United States because the ‘AIDS epidemic serves as an ideal projection for First World political paranoia. Not only is the socalled AIDS virus the quintessential invader from the Third World. It can stand for any mythological menace’ (Sontag 1990, 150). HIV/AIDS can be functionalised to underscore binary oppositions, even on a metaphorical level. The novel by Phaswane Mpe, however, challenges this representation by exposing the mythification of HIV/AIDS as a cultural construct. Coming from the ‘Outside’: Society ‘Outside’ does not exclusively refer to a geographical place; it can also be read metaphorically as a means of ‘othering’, referring to people whose behaviour is regarded as ‘irresponsible’, as ‘deviant’ and ‘outside’ of what is perceived to be the social norm. Villagers from Tiragalong are highly suspicious of people from the city, particularly of women. Especially Refentše’s mother ‘hated the Hillbrow women with unmatchable venom – a human venom so fatal it would have put the black mamba’s to shame’ (39). The black mamba is a viper, one of the world’s most poisonous snakes, living in tropical and southern Africa; and this species serves as a point of reference to illustrate the attitude of Refentše’s mother. Presented metaphorically as ‘venom’, her hatred of Hillbrow women is compared to – and even said to outdo – the poison of the viper. In an attempt to explain her strong disapproval, the narrator states that the ‘mother knew that all Hillbrow women were prostitutes, who spent their nights leaning against the walls of the giant buildings in which they conducted their trade of underwaist bliss’ (39). In sub-Saharan Africa, where HIV prevalence is high among heterosexuals, sex workers are distinguished from the ‘general population’ and represented as ‘members of risk groups’. To Refentše’s mother, Hillbrow women signify the ‘outside’: firstly, they live in the city which is unlike Tiragalong’s rural life; and secondly, allegedly working as prostitutes, their behaviour does not meet what she considers a socially acceptable norm of sexuality. The attitude of Refentše’s mother is presented as absolute since she knows that all women in Hillbrow

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work as prostitutes. However, her position is undermined and ridiculed when the narrator informs the reader that Refentše’s mother has ‘never been to Hillbrow, nor to any part of Johannesburg’. Her judgement is solely based on the stories of migrants, of whom, as the narrator points out, a ‘significant number […] happened to be shoppers themselves’ (39). By contextualising the situation and providing ironic comments, the narrator exposes the migrants as unreliable sources and unmasks the mother’s views as prejudiced so that she loses credibility. Moreover, HIV/AIDS has frequently been associated with homosexuality. This cultural link has been naturalised, strongly based on the fact that doctors first took notice of the immune deficiency in homosexuals. Representations of this myth can also be found in Welcome to Our Hillbrow: There were others who went even further, saying that AIDS was caused by the bizarre sexual behaviour of the Hillbrowans. How could any man have sex with another man? they demanded to know. Those who claimed to be informed – although none could admit to having seen or practised it personally – said such sex was done anally. They also explained how it was done – dog style – to the disgust of most of the people of Tiragalong, who insisted that filth and sex should be two separate things. Surely, this large group argued, it was the shit that the greedy and careless penises sucked out of the equally eager anuses, that could only lead to such dreadful illnesses? (4)

Again, it is Hillbrow that is identified as the ultimate origin of the virus. Unlike Refentše’s mother who holds women responsible, other characters point their fingers at homosexual men because their sexual practices are considered deviant and irresponsible towards others, as becomes evident in the description as ‘greedy’ and ‘careless’. Moreover, their sexual behaviour is stigmatised by the comparison with animals, whose behaviour is driven by instincts, not rationality. Not only are homosexual men made responsible for spreading but also for having caused the virus. Associated with ‘shit’ and ‘filth’, sexual intercourse between men is said to ‘lead to such dreadful illnesses’. Here, ‘illnesses’ is used in the plural form which could refer to the fact that AIDS is a medical condition defined by a number of possible ailments, but it could also imply that HIV/AIDS is not the only infection for which homosexuals are held accountable. Even if the text passage deals with Hillbrowans and does not explicitly name foreign Africans, they are also implicated if the word Makwerekwere is understood, as Neville Hoad suggests, to be a homonym of the English word queer (Hoad 2007, 81, 109). In this reading, foreigners in particular would be associated with homosexuality and HIV/AIDS. The readers do not learn any details about the people who produce and circulate this myth since they are not introduced or named but

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generally referred to as ‘most of the people of Tiragalong’, or with pronouns like ‘they’ or ‘others’. In spite of this lack of further information, the messages cannot simply be ignored since they are shared by a ‘large group’ of people. The narrator, however, expresses his doubts as to the reliability of the information by pointing out that those who spread their perception only claim to be informed, but do not provide any arguments, let alone personal experience, to substantiate their allegations. Widespread presumptions are criticised again and again throughout the whole novel: both the narrator and Refentše undermine the naturalisation of myths about the origin of HIV/AIDS by calling into question the reliability of the statements and the characters who circulate such stories. Cultural constructions concerning the virus’s origin are one of the major myths that shape South African representations of HIV/AIDS; another is concerned with treatment options. In Welcome to Our Hillbrow, AIDS is considered a ‘killer disease’ (113), irreversibly leading to death. Diagnosed with the syndrome, Refilwe wants to return home to die and be buried. There is no reference to, let alone discussion of, antiretroviral medication, which would help to delay and reduce the opportunistic diseases. In the latter half of the 1990s, when the novel is set, the average black South African did not have access to the medication because it was not available through the public health sector; perhaps therefore antiretrovirals are not mentioned at all. The novel briefly touches upon two supposed remedies, Virodene and the African potato, neither of which is offered as an option, let alone a ‘solution’. Described as ‘the latest pharmaceutical invention for the treatment of AIDS’ (119), Virodene is not presented as helpful because its effectiveness is considered highly questionable. As a natural remedy, the African potato is ‘said to out-perform all other pharmaceutical inventions’ (119), at least in the initial stages of the syndrome. This illustrates how fictional representations of HIV/AIDS remedies intersect with political debates because some South African researchers and politicians, including Thabo Mbeki, promoted Virodene as a possible cure; and the African potato was one of the dietary components advocated by the Minister of Health, Manto Tshabalala-Msimang.

Healing HIV/AIDS HIV/AIDS can be medically managed with antiretrovirals, but no cure has yet been developed. Nonetheless, myths about how to heal the infection are widespread. Frequently created and circulated by those who benefit from it financially and/or politically, the myth is a cultural construction based on scepticism of antiretrovirals and of the medical establishment that developed and recommends this AIDS medication.

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Moreover, emotional aspects play into the mythification as well. The idea that HIV/AIDS can be cured and permanently overcome is a more empowering and reassuring prospect than life-long dependency on medication. The Frameworks of Healing and Curing In order to examine myths about healing HIV/AIDS, they need to be contextualised in the scientific and popular frameworks of standardised and alternative medicine. Until the twentieth century illnesses could not be cured: the cause of a sickness could not be permanently eradicated with the help of any particular therapy. Instead, medical practitioners treated the symptoms in order to reduce patient suffering. With scientific progress and especially since the discovery of antibiotics in the early twentieth century, it has become possible, at least in many cases, to go beyond the treatment of mere symptoms and to tackle the causes of infectious diseases. The HIV/AIDS pandemic ‘occurred within a scientific framework and accompanied a popular mind-set that took almost for granted the ability of modern science to cure infectious disease’ (Smith 2001, 185), which can explain why researchers, practitioners and activists have been preoccupied with the search for a cure, but as yet to no avail. Since the 1990s, the biomedical standardised care of HIV/AIDS has included life-long antiretroviral therapy to decrease the viral load and additional pharmaceutical drugs to treat opportunistic diseases. This allopathic approach is commonly understood as the ‘norm’, set apart from alternative treatment strategies that have not been approved by the local regulatory authority (Onstott 2001, 150-1). In the case of HIV/AIDS these alternatives include traditional medicines, holistic approaches or special diets. Health care in South Africa is characterised by medical pluralism in which biomedicine and African traditional healing form two central paradigms (Wreford 2005, 55).6 Acknowledging that it is difficult to define traditional medicine due to its diversity and regional differences, the World Health Organisation stresses, nonetheless, that a working definition is essential. It characterises traditional medicine as ‘diverse health practices, approaches, knowledge and beliefs incorporating plant, animal, and/or mineral based medicines, spiritual therapies, manual techniques and exercises applied singularly or in combination to maintain well-being, as well as to treat, diagnose or prevent illness’ (WHO 2002, 7).7 Historically, the parallel existence of traditional and 6

7

As problematic as the terminology ‘traditional’, ‘African’ medicine – compared to ‘western’, ‘biomedical’, ‘allopathic’ medicine – might be, these established terms are used here for lack of productive alternatives, despite the politically charged meanings attributed to the concepts. The World Health Organisation differentiates between ‘traditional’ and ‘alternative’ or ‘complementary’ medicine, defining the latter as ‘a broad set of health care practices that are not part of a country’s own tradition, or not integrated into its dominant health care system’ (WHO 2002, 7).

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allopathic health care came about because African healing systems have been so adaptive and durable that they were by no means destroyed by the introduction of colonial medicine (Feierman 1985, Vaughan 1994). Operating side by side, both practices construct ‘body’ and ‘illness’ differently (Wreford 2005, 57-9). Biomedicine is driven by scientific principles, by a mechanistic understanding of the body tending to separate body and mind. With its focus on pathogens, the human body is turned into an object. Based on ancestral connections and power, African healing, by comparison, explores the ‘underlying cause’ (ibid., 77) of the illness. Addressing the symbolic value of the ailment, the treatment reaches beyond the physical aspects of the disease and includes the individual’s psychological well-being. It is shaped by ‘a holistic approach to life, equilibrium between the mind, body and their environment, and an emphasis on health rather than on disease’ (WHO 2002, 21). Due to the different methods used for diagnosis and treatment, traditional healers have their own fields of expertise and can be broadly classified as diviners, herbalists, faith healers, traditional surgeons and traditional birth attendants (Gqaleni 2007, 178; Pretorius 2000, 250-1). The general distinction between the two health care paradigms is also apparent in terminology: ‘curing’ is more often associated with western biomedicine, while ‘healing’ is used to describe the supposedly inferior work of African practitioners (Vaughan 1994, 294-5). Jo Wreford, herself a social anthropologist and a sangoma, an African traditional healer, brings attention to the different connotations of the term ‘cure’, stressing that African healers understand ‘cure’ as an ‘absence of symptoms’ (Wreford 2005, 64), not necessarily as a permanent obliteration of the disease. To avoid misunderstandings and false hopes, she therefore recommends the phrase ‘restore to health’ (ibid., 66). Despite the ‘supposedly obvious contrast between the practices’ (Vaughan 1994, 291), scholars are cautious of creating and furthering crude dichotomies between traditional and allopathic health care. Largely informed by presuppositions held by researchers and practitioners, the binary oppositions result from cultural processes that subscribe to and further entrench power structures. Although practices of traditional healing did not vanish during colonialism, proponents of biomedicine have used the supposedly superior and scientific quality of the approach to justify ‘biomedicine’s claim to hegemony’ (Wreford 2005, 58). The colonial attitude of prioritising western biomedicine has long prevailed, which is why the process of formal recognition of traditional and complementary medicines has taken so much time (Gqaleni 2007, 178). However, they are now officially acknowledged, evident, for example, in the setup of the Medicines Control Council, which oversees the testing and registration of medicines in South Africa: two of its eleven technical expert committees, consisting of specialists

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trained in that particular field, are concerned with these approaches (ibid., 180-1). Moreover, the great number of African healers indicates the crucial role traditional medicine has played in the health care system. It has been estimated that there are about 185,000 traditional practitioners in South Africa (ibid., 178) and that 60-80% of the South African population visit traditional healers ‘as their first contact for advice and/or treatment of health concerns’ (Pretorius 2000, 250). The traditional medicine sector is estimated to reach approximately three billion Rand a year (Ndaki 2009, 147). As this discussion shows, simplistic binary oppositions obscure the dynamic and heterogeneous realities of medical practices in (South) Africa. Due to their number, expertise and social standing in the communities, African healers can make key contributions to tackling the HIV/AIDS epidemic. Despite the generally promising potential of the traditional and complementary medical sector, some practitioners have abused the HIV/AIDS epidemic for their own benefit. The epidemic is a ‘lucrative opportunity’ (Richter 2003, 13) because the costs of traditional medicine in contemporary South Africa should not be underestimated. In the case of conditions such as AIDS, ‘it would be necessary for a family to pay for an extended course of treatment with a traditional healer – typically the equivalent of one month’s wages for an industrial worker’ (Ashforth 2002, 134). Given the absence of a biomedical cure and the unmet need for antiretroviral treatment, practices and remedies that promise to provide a ‘solution’ are examples of what Marlise Richter criticises as ‘AIDS opportunism’ and ‘AIDS entrepreneurship’ (Richter 2003, 13). Khabzela – Investigating Fana Khaba’s Life and Death These considerations serve as a backdrop for a close reading of the biography Khabzela. The Life and Times of a South African (McGregor 2005), in which the South African journalist Liz McGregor traces the life story of the late popular radio disc jockey Fana Khaba, known as ‘Khabzela’. In April 2003, Khaba announced on air that he was HIVpositive. With the financial support of his employers at Johannesburg’s youth radio station, Yfm, Khaba could have afforded antiretroviral treatment prior to the public rollout of HAART in South Africa, but after trying the drugs for a couple of days he refused to continue with them. Instead, he experimented with a range of alternative remedies promoted by practitioners, care takers, family members, friends and colleagues, many of whom presumed that their recommendation was the best and possibly even only response to the syndrome.8 In January 8

As most of the remedies are not thoroughly explored and discussed elsewhere, it is not possible to juxtapose the representations from the biography with others from special discourses in order to arrive at a more critical evaluation of the alleged cures. The lack of material becomes evident, for example, when Nicoli Nattrass, in her academic study on the political controversies about the provision of antiretrovirals, refers to McGregor’s biography of Fana Khaba in order to discuss

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2004, at the age of thirty-five, he died of AIDS-related diseases. In the preface to the biography, Liz McGregor reflects on her writing process. Asked to interview an HIV-positive black celebrity for Poz, a US-American magazine for people living with HIV/AIDS, McGregor comes across Fana Khaba ‘by accident’ (ix) in 2003 when he discloses his health status in public. Since ‘this particular tale got under [her] skin’ (x), she does not simply move on to the next story after finishing the interview but keeps researching Khaba’s life story. Her interest also results from her personal background as the investigation is a good opportunity for her to readjust herself to life in South Africa. She had only recently returned to the country, after spending almost two decades in London. She understands the research as personal ‘catchup time’ (x). Revealing and reflecting on her own agenda and presence in the text, she makes visible the perspective from which she tells the life story. This strategy of positioning herself makes apparent that she does not claim to tell ‘the truth’ about Fana Khaba. Speaking as a white, well-educated and privileged woman who has lived abroad for many years and who is unfamiliar with a township background like Fana Khaba’s, she highlights the limitedness of her description. She investigates Fana Khaba’s life and death as an outsider; especially the ideas about possible remedies for HIV/AIDS are new to her and arouse her attention. Her standpoint shapes her narrative and the implied reading audience. Inside and outside of South Africa, readers with a similarly privileged background and with more or less insight into South Africa’s diverse peoples and cultures will be able to follow McGregor’s train of thoughts. Taking into consideration the political implications of the biography’s construction, one can criticise that Liz McGregor is the subject of this story, while she relegates Fana Khaba to a less influential position in which he is largely written about and spoken for. McGregor relates her personal encounters with Khaba; they meet three times before his death. Yet, because of brain damage resulting from AIDS, his comments did not make much sense to her (xi). As a result, the life story is not so much shaped by Khaba’s perspective but mainly built on information provided by his family, friends, colleagues and others whom Khaba consulted in medical issues, and the journalist mediates their contributions. In order to be able to pursue her investigation, McGregor applied for a writing fellowship to the University of the Witwatersrand Institute for (contd)

alternative treatment options (Nattrass 2007, 124-6); and the volume edited by Cullinan and Thom (2009) comprises a contribution by McGregor based on her research for the biography. However, there is material on the controversial German doctor and businessman Matthias Rath (Nattrass 2007, 159-62; Thom 2009) who promotes a range of high-dose vitamin products as treatment for heart diseases, cancer and HIV/AIDS. The South African Medical Association and the Treatment Action Campaign built a legal case against Rath, preventing him in 2008 from conducting clinical trials in South Africa and from publishing advertisements that characterise his products as a cure for HIV/AIDS (TAC 2008).

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Social and Economic Research – a distinguished institution known by its acronym WISER. The fact that McGregor got the post illustrates the high level of academic and popular interest in the story of Fana Khaba but also, more generally, in the South African HIV/AIDS epidemic. In 2005, her biography of the DJ was first published and was shortlisted for that year’s Sunday Times Alan Paton Award: South Africa’s most prestigious book prize for non-fiction. In 2007, the book was reprinted with a preface by Zackie Achmat of the Treatment Action Campaign. These instances can be read as signs of the success and the critical approval with which McGregor’s book has met. Not only does the journalist describe Khaba’s personal and individual features, she also works out the social structures that have shaped him by exploring major events in Khaba’s life: his upbringing in Soweto; his development from unregistered student, to minibus taxi driver and then to successful disc jockey; his way of dealing with HIV/AIDS. As the subtitle The Life and Times of a South African suggests, McGregor locates Fana Khaba in the contexts of contemporary South Africa, arguing that Khaba ‘could not have been made anywhere else but in South Africa in the tumultuous closing decades of the 20th century’ (xi). Moreover, the indefinite article used in the sub-title suggests that Fana Khaba’s case can be read as an example of the lives of (black) South Africans in general. Taking these circumstances into consideration helps her to examine Khaba’s life and death, especially his decision to refuse antiretroviral therapy. Introducing the subject matter, McGregor opens the book with a detailed and unabashed account of Khaba’s death: Fana Khaba died a horrible death. The HI virus had destroyed his brain, leaving him demented and hallucinatory. He could no longer move his arms or legs. He could neither defecate nor urinate. The colostomy bag attached to his bowel to drain his waste was leaking blood. Pus seeped from the wound left by the operation to remove his intestines. A vast bedsore had eaten away his right buttock. More bedsores festered on his back, hips, ankles and elbows. (ix)

In these first few sentences of the preface, the author enumerates various aspects of Khaba’s physical condition, so that the reader is directly confronted with his death in all its ugliness and agony. Yet, in going on to call his death ‘premature’ and ‘all the more tragic because it was preventable’ (ix), McGregor qualifies this opening description by contextualising his death. Unlike many other people living with HIV/ AIDS, she argues, Khaba had the chance to avert his death because he could have had access to antiretroviral treatment which he declined. Being in the powerful position to make decisions about his health and medication is a clear sign of Khaba’s privilege, setting him apart from most black South Africans. However, having decided against

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antiretrovirals, he is left with little time or space to act, as McGregor visualises it: ‘Fana was on a roller-coaster to self-destruction’ (3). The metaphor can be decoded as an illustration of various ups and downs in his health status as well as a loss of control and agency. No longer able to change direction or to stop the ride, Fana Khaba heads straight and inevitably towards his own death, for which the journalist holds Khaba himself responsible, as the word ‘self-destruction’ shows. To McGregor, his death is of less concern than seeking an explanation for his decision to decline treatment. She focuses on ‘the central paradox of his death – why he refused the drugs that might have saved him’ (xi). Similar to her description of his death as ‘premature’, ‘tragic’ and ‘preventable’, the term ‘paradox’ also highlights that McGregor’s position is not ‘neutral’ or ‘distanced’ but shaped by her own presumptions. In her investigation, the journalist encounters people whose understanding of HIV/AIDS and antiretrovirals does not subscribe to the explanations of the medical establishment.9 McGregor has never questioned the apparently ‘natural’ statements of the biomedical scientists. In the course of her research, however, she comes to realise that this view on the virus is not ‘universal’. Since the journalist had been living in the UK from 1985 to 2003, for almost all the time that the virus has been known, it is not surprising that she accepted the dominant conceptualisation of HIV/AIDS. Taking into consideration competing perspectives (although not necessarily agreeing with them) McGregor makes an effort to represent the complexity of the issues and to unmask the constructedness of apparently ‘innocent’ statements. In his foreword to the 2007 edition, Zackie Achmat approves of this approach. ‘In her biography of Fana Khaba, Liz McGregor avoids seeking the single cause of infection, denial, fear and death. Khabzela is a moving and complex account of masculinity, culture, tradition, class, race, sex, religion and politics in the age of HIV and AIDS’ (viii). Fana Khaba’s Decision: Declining Antiretrovirals Faced with Fana Khaba’s AIDS diagnosis, his employers at Yfm studio management show a supportive attitude. Although the DJ works as an independent contractor and is not on a medical aid plan, the Yfm managers offer to continue to pay his salary and medical expenses 9

Satch, a taxi driver who runs errands for Yfm and is a close friend of Fana Khaba, confronts McGregor with his theory about the origin of HIV/AIDS, according to which the virus was manufactured by someone called ‘Apollo’ in order to kill black people and to benefit financially by making them healthy again. In Greek and Roman mythology, Apollo is one of the most central gods associated with both curing and death. Such ambiguity is employed in this cultural construction of HIV/AIDS, in which one force is considered able to produce and to halt the infection. Satch argues that ‘they have a cure in New York but they want lots of black people to die first’ (4). Although he does not specify whom he refers to as ‘they’, the racist implications that inform the statement become apparent, nonetheless. Unlike the theories discussed above, however, the myths referred to by Satch do not only concern the origin of the virus but also a cure that is supposedly available but held back by ‘them’.

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until he is well enough to return to his post as a presenter (158). In return, they expect Fana Khaba to start antiretroviral treatment and to take time off to recover. Yfm has a stake in this arrangement because the radio station could become the first in South Africa to broadcast a regular show on people living with HIV/AIDS, hosted by Fana Khaba. In order to secure exclusive insights, the managers want the DJ to refrain from giving interviews and to produce ‘a daily audio diary that would both keep contact with your listeners and be an educational and inspirational message on HIV/Aids’ (158). Although both sides would benefit from this arrangement, the managers do not succeed in their aims. Fana Khaba starts antiretroviral treatment but gives it up after a couple of days, turning to alternative remedies; he dies within a couple of months. Fana Khaba does not give reasons for his decision. ‘“Why?” I asked Fana. He pretended not to hear the question’ (3). Recognising Khaba’s ‘antipathy’ (72) to antiretrovirals, Liz McGregor investigates public perception of the medication and comes across the similar yet different case of Zackie Achmat. Living with HIV/AIDS like Fana Khaba, Achmat politicised his own health status by refusing antiretrovirals. Taking on the role of a representative of the South African AIDS epidemic, he refused treatment until it became accessible to all South Africans through the public health care system. As a leading AIDS activist, his stance generated publicity for the lack of access to medication. In 2003, The New Yorker published a long article on him, tellingly entitled ‘The AIDS Rebel. An Activist Fights Drug Companies, the Government – and His Own Illness’ (Power 2003). The documentary film It’s My Life in the Steps for the Future film collection also explores Achmat’s provocative decision. Shot over five months, the film combines private and public images of Zackie Achmat by including sequences filmed at his home, at friends’ houses or his doctor’s office, at TAC rallies and in court rooms, as well as original footage from news programmes. One scene shows a telephone conference with his friends, colleagues and the TAC executive members during which Achmat explains his refusal, although his health is poor and it is time for him to start taking antiretrovirals: My position is based on an understanding that I want a right of life for myself but I want the right of life and I want to live in a political community in which that right is extended to every person. If such a political community does not exist and the only reason that you die […] is because you are poor when you are sick, then I do not want to be part of such – on a conscience basis and on a moral basis – I could not be part of such community.

Achmat clearly states his priorities and puts the needs of the community first. He adopts this provocative stance in the name of the majority of South Africans living with HIV/AIDS, namely poor, black

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people who would otherwise remain faceless and voiceless since they lack political power. While many South Africans look up to Zackie Achmat as a hero, some disapprove of his drug strike, arguing that such martyrdom is not productive. Yet regardless of what people think of the sacrifice, Achmat’s protest actions convey his human rights agenda. However, such motives do not become apparent in Fana Khaba’s decision-taking. When interviewed by McGregor, Fana’s mother Lydia Khaba states that Fana has never been political. Even in the face of the tumultuous period of the 1976 uprisings in Soweto, she describes her son as ‘…just neutral. He would never take a stand. But, from a young child, he always wanted something to do with radio’ (36). As her comment shows, Fana Khaba has always been determined to achieve his aims, though not in a political sense. Nonetheless, Zackie Achmat presents Khaba as a fellow AIDS activist in his speech at the DJ’s funeral. Not only does Achmat use this strategy, but, as Liz McGregor remarks critically, almost all the speakers enlist Fana Khaba for their own purposes and, at times, competing messages. After his death, Fana Khaba is instrumentalised, turned into a ‘brand […] that could now be shaped into anything anyone wanted’ (19). Trying to find explanations for his rejection of the drugs, McGregor interviews his companions. Greg Maloka, one of Fana Khaba’s colleagues and the general manager of Yfm, provides McGregor with two possible explanations, both of which seem ‘equally persuasive’ (160) to the journalist. Firstly, the decision might result from Fana Khaba’s character traits such as ‘his refusal to accept what was offered to him and his determination to achieve his dreams’ (160). Had it not been for these qualities, Fana Khaba would not have been able to pursue his goals and become a DJ. Yet in the case of HIV/AIDS, Greg argues, this willpower has turned into a stubbornness that is counterproductive to his recovery. Secondly, Greg reasons that Fana Khaba has been led to believe that he must decide between the two paradigms of ‘western v. African’ influences. Read in terms of the framework of curing and healing, Greg’s argument illustrates that the DJ – and probably also Greg himself – is influenced by the simplistic dichotomy of biomedicine v. traditional healing practices. Greg believes that the different views have played a fatal role in Fana Khaba’s life, especially when he began to suffer from dementia and was therefore unable to make rational decisions. Khaba’s aim was to become well and therefore, in Greg’s words, was willing to ‘take whatever steps would make him better: whether it was kneeling down and praying or taking antiretrovirals or going to inyangas [herbalists]’ (161).10 Enumerating concrete practices, 10

Fana Khaba’s mother is a devoted Jehovah’s Witness and she brought up her children accordingly. Greg’s comment on praying can be read in this context. In their official publication Awake! Jehovah’s Witnesses state their belief that there will be a solution for HIV/AIDS because ‘[i]t is not

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Greg highlights the different messages and pieces of advice. Yet, unable to think and reason properly, Fana was overburdened by the variety of possibilities and recommendations, which is why, as Greg supposes, ‘at some point, he got overpowered by a particular belief and he thought all those western medicines were not going to help him’ (161). Following this reasoning, Khaba’s drug refusal was not the result of an active or rational decision-taking process but rather a way of coping with what he believed to be the necessity to decide between these two opposing possibilities. Physically and mentally no longer able to oscillate between the viewpoints and unable to expose the dichotomy as a construction, Fana Khaba gave in to one stance. His behaviour pays tribute to the powerful consequences that the construction of binary oppositions creates. His sense of being torn between two paradigms would have been counterproductive to antiretroviral therapy anyway because the medication requires strict adherence. Sibongile Radebe, Khaba’s fiancée, emphasises that Fana Khaba began taking antiretrovirals but then stopped after about a week. Starting to feel worse, he believed that they were going to kill him (151, 181). Bearing in mind the heavy side effects that accompany antiretrovirals, particularly at the beginning of the treatment, it might not be surprising that Fana Khaba had the impression that the drugs harmed rather than helped him. Sibongile argues that antiretrovirals ‘couldn’t do much in his body because he didn’t believe in them’ (181). This comment conveys Sibongile’s holistic understanding of treatment according to which physical ailments cannot simply be treated with pharmaceutical or biochemical interventions because mental and spiritual elements as well as confidence in the medication are equally important. Concerned with healing rather than curing, Sibongile accepts Fana Khaba’s decision and does not put pressure on him to take antiretrovirals without believing in their efficiency. McGregor goes on to analyse why Fana Khaba could not live with the side effects and continue the therapy. She argues that ‘acknowledging how ill he was and submitting to the treatment required to make him well would have required a temporary surrender of his independence, a reversion to an infantile state’ (150). This ‘surrender’ or ‘reversion to an infantile state’ would have meant that Fana Khaba no longer had control over his own life but would be dependent on medication and on the support of his family in general and his mother in particular. In an attempt to comprehend Fana Khaba’s situation, McGregor also draws on her own background. For a few days each month, McGregor takes an HIV-positive child out of an orphanage. Looking after the boy, she realises the great effort and responsibility of taking care of his medication even though (contd)

God’s will for humans to be forever plagued with illness’ (Jehovah’s Witnesses 1998). As long as there is no cure available, they recommend prevention as the best strategy of facing the HIV/ AIDS epidemic.

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the orphan is very obedient and accepts whatever medicine she gives him. To make antiretrovirals work for Fana Khaba, McGregor argues, he would have had to behave in a similarly compliant way and ‘revert to childish submissiveness’ (151). Contextualising the situation, McGregor illustrates how Fana Khaba would have struggled with a position that would have gone against his self-image. Taking his professional career and future into his own hands, Fana Khaba managed to make his dream of becoming a radio presenter come true against all odds. Known as ‘the DJ of the poor’ (102), he never made an effort to disguise his humble background but encouraged poor black South African youth to follow his example (111-15). Furthermore, weakness and inferiority are incompatible with gender stereotypes, according to which men take up the dominant role and exercise power over women. As for the reasons why Fana Khaba turned away from antiretrovirals and to alternative medicine instead, Sibongile argues along similar lines as Greg Maloka: she believes that ‘at some point he just got desperate and took whatever people said would cure him’ (151). In his distress, Fana Khaba would try anything that might help him and put him back into the position of a man in charge of his own life. In the case of Khabzela, a person of public interest in South Africa, seeking treatment has what appears to be an empowering effect. To promote their individual remedies and alleged cures, many people visit and flatter him, attempting to convince him to give their particular treatment a try. ‘Once again,’ McGregor argues, ‘there were people fawning over him. He had power. He could make a healer famous by trying out his or her cure’ (151). Like the journalist, Angie Diale and Masi Makhalemele, two women who work as AIDS counsellors and who accompany the DJ for six months, are able to see through the attention he receives. ‘All these doctors, traditional healers – all wanted a piece of him. They knew they could become famous through him’ (156). Being once more the centre of attention, Fana Khaba feels respected. However, the situation is deceptive because this attention is (similar to Yfm’s offer of antiretrovirals) based on a strong commercial self-interest. The DJ does not so much return to being an active and powerful man, but is instead turned into an object or brand. Similar to those speaking at his funeral, the practitioners have their own agenda and use Fana Khaba to market their product. To argue that Fana Khaba distrusts biomedicine and therefore refuses to take antiretrovirals would oversimplify the situation because this argument is still caught in false dichotomies. Bringing together diverse voices and arguments, McGregor highlights the complexity of Khaba’s decision. To explain his behaviour, various factors have to be taken into account: the social context of his (family) life, his deteriorating health and dementia, the side effects of antiretroviral therapy, and his despair in trying to get healthy and to return to his life as a DJ.

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Fana Khaba’s ‘Choice’: Alternative Remedies Fana Khaba explores various alternative medications, including nutritional interventions, such as ‘Amazing Grace’, ‘Africa’s Solution’ and a herbal remedy prescribed by an African healer. The idea of ‘choosing’ medication has been highly controversial in the context of the South African HIV/AIDS epidemic as it implies different but equally effective and safe treatment options. While she was Minister of Health in Mbeki’s administration, Manto Tshabalala-Msimang advocated nutrition and micronutrients as promising interventions. Studying the political controversies over antiretrovirals, Nattrass strongly disapproves of this ‘confusing discourse of “choice”’ (Nattrass 2007, 143). She does not doubt that a healthy diet is good for all people, regardless of their HIV status. What she evaluates as ‘confusing’, however, are the false promises of the alleged ‘choice’ which result from simplified and limited descriptions (ibid.). Stressing that antiretrovirals do not heal HIV/AIDS and that they have unwanted side effects, unlike a healthy diet, Manto Tshabalala-Msimang presents them as inferior to the alternatives. As her statements reveal her limited assumptions about ‘good’ medicine, she can be said to mythify alternative remedies and to confuse patients as to the most appropriate and reliable treatment option. This unbalanced presentation is not in keeping with the concept of ‘choice’ because people living with HIV/AIDS are not provided with all the research results and information necessary to weigh up different options. The Treatment Action Campaign argues along similar lines. TAC respects people’s right to choose the course of treatment they follow according to their belief. But this is only part of the story. People with lifethreatening illnesses are vulnerable and desperate. This despair allows for families, elders, leaders, opinion makers and health professionals to influence ‘choices’. We urge individuals and families to take informed decisions based on scientific evidence. While certain herbal and other remedies may alleviate AIDS symptoms, no evidence yet exists to show they are equally safe and effective alternatives to antiretroviral medicines. (TAC 2006)

This newsletter makes evident why TAC prefers antiretrovirals although the infection is still not fully understood and although alternative remedies might also have a positive impact on people living with HIV/AIDS. Antiretroviral therapy has been clinically tested and found to be safe and efficient. TAC implores South Africans to make informed decisions; but, left with no research results on alternative treatment and with no clear guidance by the government, South Africans have to negotiate the variety of therapies by themselves. The journalist Kanya Ndaki warns that ‘the discourse made popular by the Health Minister and other public figures in framing traditional medicine in opposition to Western medicine has

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created an environment ripe for charlatans, quacks and opportunists’ (Ndaki 2009, 146). They can exploit the epidemic for their own financial benefit because, unsurprisingly, ‘the lure of the cure is only too evident’ (Nattrass 2007, 163). Fana Khaba seems to be tempted by the prospect of a cure, as his ‘healing odyssey’ (ibid., 125) suggests. During their initial meeting over lunch in a shopping centre in suburban Johannesburg, Liz McGregor gets a first look at Khaba’s alternative medication when he asks the waiters for raw garlic and olive oil. Together with lemon, African potato, beetroot and other vegetables, garlic and olive oil are components of the nutritional intervention promoted by Tshabalala-Msimang. The journalist classifies Khaba’s requests as ‘increasingly bizarre demands’ (2) – an evaluation that can either be read as a sign that McGregor is not familiar with the governmental HIV/AIDS policy because she has stayed abroad for many years; or she is very well able to see through the demands but, through her choice of words, highlights that she is suspicious of this treatment approach. ‘Amazing Grace’: Produced and Promoted by ‘Dr Irene’ During their first meeting, Fana Khaba also mutters about ‘amazing grace’ (2) and McGregor mistakenly believes that he is praying over his food. However, when he takes a couple of tablets from ‘a plastic bag full of red and yellow pills’ (3), she learns that ‘Amazing Grace’ is his medication. Realising her misunderstanding, McGregor starts to write ‘Amazing Grace’ as a brand name with capital letters. The name of the product is reminiscent of the eponymous Christian hymn in which the lyrical voice converts to Christianity and is saved by God. In such intertextuality, the brand name suggests a religious dimension to this treatment. The packet spells out that the drugs are a ‘Super Immune Booster. An extract of natures [sic] pure natural herbs. Recommended dosage: two capsules three times a day’ (3). Described with the terms ‘super’ and ‘booster’, the beneficial and strong impact of the drugs on the patients’ immune system is highlighted. With its choice and repetition of words, the slogan calls attention to the natural or ‘inartificial’ quality of this remedy: ‘nature’, ‘natural’, ‘pure’ and ‘herbs’. Both the emphasis on natural ingredients and the spiritual references suggest that the pills cannot do any harm and do not have any side effects. Indirectly, ‘Amazing Grace’ is thus contrasted with antiretrovirals and other pharmaceutical products that have been developed chemically by scientists in laboratories. McGregor does not find out what the specific ingredients of the tablets are but Irene, the woman behind this remedy and who produces and distributes the medication, tells her that all components can be found in a supermarket, suggesting that the remedy is an ‘ordinary’ product. The cure’s potency, Irene claims, is derived from ‘the invisible divine ingredient’ (188). Another striking feature

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of the slogan on the packet is the grammar mistake in the genitive (of nature). It might simply be a careless mistake, which is, however, unlikely on the label of a product. It can also be read as a sign that supports the content of the message: the capsules are not produced by an educated elite of scientists but by an average person who does not speak English as a mother-tongue and therefore makes one of the most common mistakes among non-native speakers. After her meeting with the DJ, McGregor learns more about ‘Amazing Grace’ from stories that Fana Khaba’s friends and family members tell her as well as from her own research. The way in which the journalist hears of ‘Amazing Grace’ indicates the main means of circulating information about this supposed cure, namely by word of mouth. Former patients who consider themselves healed present their health status and body as evidence of the drug’s success. They can therefore be said to contribute to the construction and spread of the healing myth. Although they have nothing to gain, the people are willing to spread their accounts of ‘Amazing Grace’, illustrating how convinced they are of its efficacy. There are other explanations for this low-key marketing strategy. If ‘Amazing Grace’ was advertised officially, the South African Medicines Control Council might interfere with the manufacture and sale of the remedy. This regulatory authority has to ensure that the drugs sold in South Africa are safe and therapeutically effective. As the legal debate about the production and use of generic antiretrovirals has shown (see Chapter 3), pharmaceutical companies want to secure their drug patents and market share, which is why they might try to eliminate rival (complementary) products. Spreading the information on a grassroots level is a cheap and highly efficient way of convincing people of the remedy. The immediate and informal advertising implies confidentiality, suggesting that ‘Amazing Grace’ is a secret cure available only to a select few. People who trust in this remedy have their share in this secrecy because, although willing to spread the information, they keep silent about the supposed cure when faced with doctors and hospital staff (179). Again, this behaviour can be traced back to the established dichotomy between biomedical and alternative approaches. Irene, the manufacturer of ‘Amazing Grace’, upholds and benefits from the binary opposition because it is her business to promote and sell her remedy as a cure. In the case of Fana Khaba, a woman seeks him out after hearing of Khabzela’s condition on the radio (178-81). Bringing forward the case of her husband as a promising example, she strongly recommends the herbal treatment. Neither the woman nor her husband are referred to by name but with generic terms such as ‘woman’, ‘man’, ‘wife’ and ‘husband’, securing their anonymity and suggesting that this case can serve as an example. The woman explains how her HIV-positive husband had been terminally ill and in hospital until he started

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taking ‘Amazing Grace’, which supposedly made him healthy again. Simultaneously, the husband started antiretroviral treatment. Neither the wife nor Sibongile, Fana Khaba’s fiancée who tells McGregor about the incident, presents the man’s well-being as a result of taking the antiretrovirals; they believe in the healing qualities of ‘Amazing Grace’. Writing about the apparently miraculous improvement in health, McGregor strongly relies on Sibongile’s vivid account, which she presents mostly in direct speech so that the readers can get a fairly immediate impression of her viewpoint. Additionally, the journalist expresses her own opinion and doubts about the reason for the man’s recovery when she comments critically on Sibongile’s description of events. Presented with two different explanations, the readers can get an idea of the complexity of the issue. Fana Khaba and his family are not at all sceptical; they are intrigued by the success story which is why the DJ is taken to Irene, whom they refer to as ‘Dr Irene’ (177, 181). While the title of Doctor signifies medical knowledge (in the field of western medicine) and a superior position, the use of her first name suggests a certain familiarity that serves to overcome differences in power. Irene is a white, Afrikaans-speaking woman in her early sixties from Brakpan, a town east of Johannesburg in the mining and industrial area of the East Rand. Referring to Irene, Greg Maloka of Yfm speaks of ‘the woman in Boksburg’ (161, 177). Boksburg is a town close to Brakpan; yet, this geographical inaccuracy underscores that meanings about Irene and ‘Amazing Grace’ are circulated informally through oral communication. Having left school early, Irene does not have much formal education, let alone a degree in medicine. Addressing her as ‘Doctor’ indicates the image others have created of her. In an attempt to provide more accurate information, McGregor refrains from using the doctor title and merely writes about ‘Irene’ instead. After their personal encounter, McGregor describes Irene as ‘a little daffy granny’ (183). The term ‘granny’ pays tribute to her age but also generates connotations of endearment, presenting Irene as warmhearted and caring. This characterisation is supported by the adjective ‘daffy’ that describes her as somewhat strange in an amusing way, not as intimidating or threatening. The expression renders her harmless so that she does not come across as a profit-oriented businesswoman as one might have expected of someone who produces and distributes an AIDS remedy. McGregor underlines this portrayal when she writes that Irene is ‘entirely without any air of self-importance, despite the preposterous claims delivered in her soft, quick voice’ (183). These attributes do not blind the reader to the fact that Irene mythifies ‘Amazing Grace’ as an AIDS cure and makes quick and substantial sums of money out of it. Following Irene’s advice, the patients take two tablets three times a day so that the costs for treatment are 100

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Rand a month with an extra fee of 40 Rand if the patients want the drugs to be delivered. According to Irene, about two thousand people use ‘Amazing Grace’, most of whom are black and live with HIV/AIDS (188). To evaluate these figures, it is important to bear in mind that the ingredients can be purchased at a supermarket – for probably fairly reasonable prices. Still, McGregor is careful in criticising Irene because she herself also benefits from the HIV/AIDS epidemic. Had it not been for Fana Khaba, the journalist might not have had such a promising story or a WISER writing fellowship. Unlike Irene, however, McGregor does not sell false hopes to desperate people. Despite Irene’s financial benefits, the journalist believes that Irene is ‘benign in intent’ (188), in keeping with her affectionate depiction of Irene as ‘granny’. Discussing the case of ‘Dr Irene’ and her product ‘Amazing Grace’, McGregor also analyses Irene’s attitude towards antiretrovirals. The AIDS counsellors Masi Makhalemele and Angie Diale strongly advise Fana Khaba to take antiretrovirals. Angie Diale explains that antiretrovirals ‘are specifically made to deal with the virus within you, to fight the virus. The herbs are good to boost your immune system’ (181). The AIDS counsellor is tolerant in that she does not insist on antiretrovirals as the sole medication but is willing to accept complementary treatment such as Irene’s herbal remedy. However, Fana Khaba does not agree with this compromise because he believes that antiretrovirals harm him and he claims that Irene warned him about them. Recalling their conversations with the DJ, the AIDS counsellors remember how Khaba said that Irene ‘emphasised over and over again that he mustn’t take ARVs [antiretrovirals]. He said Irene said that they would make him sick’ (178). Telling McGregor about Khaba’s opinion on antiretrovirals, Masi Makhalemele is careful to point out who said what to whom. Using complex sentence structure and indirect speech, she highlights that she only repeats Irene’s instructions and Khaba’s fears, thereby making sure that the statements presented are not confused with her own perspective. Judging from her conversation with Irene, McGregor comes to the conclusion that the ‘injunctions against ARVs were all Fana’s. Irene never at any point told me that ARVs were poisonous. Indeed she had no problem with their being taken in conjunction with her Amazing Grace, although she would maintain that they were unnecessary’ (188). Taking into account Fana Khaba’s state of mind as well as his negative experiences with the side effects of antiretrovirals, it would not be surprising if he presumed instructions that Irene had never given. The dichotomy between allopathic and traditional treatments is so established and naturalised that it could have influenced Khaba’s thinking. The claim that antiretrovirals are toxic had been circulated by leading politicians of Mbeki’s administration so that suspicion about antiretrovirals has come to be widespread in South Africa (see Chapter

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3). Even if Irene did not instruct Fana Khaba along these lines, the DJ might have made up further advice that is in keeping with the general discussion of the treatment. Discussing Irene’s motivation for producing and promoting ‘Amazing Grace’, McGregor emphasises Irene’s good intentions but also draws attention to Irene’s financial benefit. Furthermore, a Christian healing ethic plays into Irene’s motivation for producing and promoting her remedy, evident, for example, in the intertextual reference of the drug’s name to a church song. According to her own account, Irene became involved in the ‘business of saving lives’ (184) when her eldest son died of brain cancer at an early age in 1970. Explaining the divine purpose of this incident, she says, ‘I could not understand how the Lord could allow this child to be taken. It was only much later when I got involved with people with Aids that I could understand. Because I could not feel their pain, I couldn’t feel compassion for them if I hadn’t been there’ (185). With hindsight, Irene considers her child’s death an important turning point in her life because it marks the beginning of her concern for ill and dying people. In the distressing period of her child’s death, the local minister of the Dutch Reformed Church rejects Irene because she is married to a South African of Greek descent and of Greek Orthodox faith. Deeply impressed by a preacher from the Full Gospel Church whom she meets at her child’s deathbed, she turns to this evangelical faith instead. In her conversation with McGregor, Irene launches at times into ‘evangelical-speak’ (185), illustrating the prominent role her faith plays in her life and especially in her role as the woman behind ‘Amazing Grace’. Not only does the brand name pay tribute to her deeply religious mindset, it also comes across in the mission statement which she reads to McGregor. In 1998, HIV/Aids was the topic of discussion and concern. People were dying at such a tempo that a cure was on everyone’s lips. I do believe the Holy Spirit dawned on me. A force greater than myself led me to believe this was a divine intervention and the only cure as the Holy Spirit is like a consuming fire. Despite the negativity, mocking and criticism, I had not been disappointed. My highest expectations were met and my first patient with full-blown Aids recovered and tested negative after using the medicine for only four months. Realising that this is a God-given miracle, I decided to call it Amazing Grace. My mission is to reach out to the oppressed and dying. The Lord confirmed through prophecy that he had given in front of me an open door no man shall close. I would like to cater for countries such as Uganda, Malawi, Nairobi and the rest of Africa. (183-4)

In this statement, Irene constructs ‘Amazing Grace’ as a divine intervention, as a cure for HIV/AIDS. Using the noun phrase ‘negativity, mocking and criticism’, she does not state who criticised her remedy and thus leaves her critics without a face or voice. Attributing the

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apparent success of her medication to a divine force, Irene does not claim healing powers for herself. She considers it her ‘mission’ to turn to people living with HIV/AIDS and to distribute the drug. Irene presents herself as very unassuming when she says, ‘The honour and glory go to the Lord. I take no credit for myself’ (188). However, her modesty can also be read differently. Putting oneself into an inferior and passive position can also be considered a strategy to avoid responsibility. Irene is successful in staging herself as God’s helping hand. The woman who comes to pick up Fana Khaba in order to take him to Irene remarks that ‘Irene is a Christian. Whatever she does it comes from God’ (179). As this comment shows, the woman places Irene’s actions and medication in a divine framework. Sibongile argues along similar lines when she states, ‘I feel Irene was sent by God somehow’ (180). Unable to explain the effects Irene has on Fana Khaba, Sibongile believes that the intervention is part of a divine plan which also puts Irene’s advice beyond doubt. Like the grammar mistake on the product’s label, the final sentence of the mission statement shows Irene’s lack of general knowledge and formal education. Enumerating countries where she wants to make her drug available, she includes Nairobi, not a country but the capital of Kenya. Regardless of her mistake, the list of countries can be read as a sign that Irene is primarily concerned with healing people in Africa. With this focus, Irene presents ‘Amazing Grace’ as a local remedy to treat the African epidemic, whereas antiretrovirals are distributed globally. Irene’s qualifications for developing and prescribing a drug are not specified, but McGregor becomes aware of what her patients consider to be her expertise. ‘Irene was equated in their minds with “medicine”; white western medicine. [...] But she also brought in divine agency and emotion, which most medical practitioners failed to do’ (179). Since Irene is white, her patients, mostly blacks, directly associate her with biomedicine and the fields of knowledge it entails. This classification subscribes both to colonial stereotypes and to the dichotomy of ‘western v. African’ medicines; the mindsets are so established that they have come to be naturalised. Irene’s ‘expertise’ is thus largely based on her patients’ presuppositions. Following a holistic approach that caters to her customers, Irene is thought to combine the two major medical paradigms, which is why she meets with particular approval, not only by Fana Khaba. Irene runs her business from a building adjacent to her house, characterising her as a pragmatic businesswoman who tries to find a cost-efficient and convenient place for her trade. Separating her workplace from her private sphere also shows how professionally she has set up her business. Due to the high turnover of the herbal remedy, she can afford to pay six employees and hardly ever conducts consultations herself. She has one professional AIDS counsellor

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working for her, two assistants for administrative work with the case files and three assistants for the consultations with new patients. In addition to the staff, ‘several pastors [are] wandering in and out – all black and from various evangelical churches’ (189). Like the brand’s name and Irene’s mission statement, the presence of the pastors also makes visible her evangelical faith as one of the major driving forces in her business. Following the practices of healing, the assistants take care of the patients’ physical well-being, while the preachers provide them with spiritual support through prayer. McGregor writes about the consultations that there is ‘no attempt at physical examination. Patients’ symptoms were ticked off a list and a diagnosis made. Treatment didn’t vary, whatever the symptoms. Everyone got Amazing Grace, dispensed with a prayer’ (189). Using passive verb forms, McGregor illustrates that the cases are dealt with in a standardised manner. In particular, the choice of words and the ironic tone when writing about the prayers convey the journalist’s doubts about the efficacy of this treatment. The consultation practice seems to be less geared towards the individual than the focus on healing suggests. However, McGregor seems to be fairly isolated with this critical attitude because Irene is very successful in promoting and selling ‘Amazing Grace’ as is evident in both the high sales figures and the vigour with which (former) patients circulate their success stories. Irene has made a stronger impression on Fana Khaba than any other practitioner (177). When he first starts the herbal treatment, it seems to work better than other treatments. Friends and family report how Fana Khaba is taken to Irene as a paralysed man but within twenty-four hours after the consultation and after swallowing the first few pills he is up on his feet and able to walk. According to Sibongile, it is this incident that makes Fana Khaba ‘believe in Irene. He wanted nothing but Irene. […] [H]e believed in Irene more than in the pills, more than in himself and God’ (181). To Fana Khaba, Irene as a practitioner and minder becomes the centrepiece of the healing procedure, while the medication is mere embellishment. The DJ’s fascination with her is so strong that he sticks with Irene even though the improvement in his own health is only temporary. His AIDS counsellor, Masi Makhalemele, is convinced that Fana Khaba takes Irene’s advice because she is white (178-9, 190). Discussing skin colour as the most obvious marker of difference suggests that Masi subscribes to racial stereotypes. This assumption might help her to come to terms with the fact that the DJ adheres to Irene, but not to his black AIDS counsellors. ‘Africa’s Solution’ Although Irene has left a strong impression on him, Fana Khaba stops consulting her at some point and stops taking ‘Amazing Grace’ (185). In his desperate search for a cure, he turns to other remedies, one of

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which is a liquid herbal remedy with a name as impressive as ‘Amazing Grace’, namely ‘Africa’s Solution’. The brand name implies that this tonic is produced by and for the people in Africa as an answer to local health issues, for example, to the African AIDS epidemic. Comparable to Virodene and ‘Amazing Grace’, it suggests a promising outcome for African research and medicine. With its distinct visual elements, the label of the bottle supports this geographical focus. It depicts a map of Africa and makes use of the colours of the African National Congress (ANC) – black, green and yellow/gold – which symbolise the people, the fertility of the land and the mineral wealth. The term ‘solution’ is polyvalent; it promises to solve health concerns and it highlights the form of the medication. Unlike ‘Amazing Grace’ or other tablet remedies, it comes in liquid form so that it can be taken orally, it can be used as a tincture to treat wounds, abscesses or sores and it can even be fed in a drip, as in Fana Khaba’s case (197). Dr Barnard: Manufacturing ‘Africa’s Solution’ Dr Barnard, whom McGregor meets during her research, is an Afrikaner biochemist in his early sixties, who was a university lecturer before he set up his own company Bermins that produces ‘Africa’s Solution’ and other immune-boosters. His full name is Hendrik Christoffel Barnard; going by the name of Chris Barnard, he evokes memories of the renowned doctor Professor Christiaan Barnard, a key figure in medical history because he was the first surgeon in the world to transplant a human heart in South Africa in 1967. Emphasising the similarity of their names, the biochemist Dr H. C. Barnard constructs a connection between himself and the surgeon, thereby making the most of his colleague’s high reputation and medical expertise. Tine van der Maas, a nurse who strongly advocates his products, refers to him as ‘Professor Barnard’ (197). As in the case of ‘Dr Irene’, the title indicates the admiration with which the nurse regards the scientist. Again, the title is part of the image others have created of the biochemist, which is why McGregor sticks to ‘Dr Barnard’. Dr Barnard’s background in biochemistry is of great significance to his work, as the company’s guiding philosophy conveys. The molecular function of the body must be sustained at an optimal functional level so that the body can fight disease and cure itself. Bermins products are not medicines, but contain the necessary essential elements of the different systems in the body and in cases of disease, natural products from nature to help the body’s fight against the disease in the most natural way possible. (198)

The company places its immune-boosters in the field of natural remedies by repeating the terms ‘nature’, ‘natural’ and ‘essential’ in this statement. However, the scientists focus exclusively on the physi-

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cal body as a mechanical apparatus. Typical of a biomedical and curative approach, this understanding sets apart Bermins’s drugs from traditional healing practices. Moreover, the company makes public their products’ lists of ingredients, including their exact amounts. This openness can be read in terms of the company’s self-image. Their remedy is not a ‘secret’ or ‘mystery’ but a ‘scientific invention’. In a conversation with McGregor, Dr David Spencer, one of southern Africa’s leading medical experts on HIV/AIDS, explains that immuneboosters can be marketed as food supplements, which do not require the approval of the Medicines Control Council (222-3). The social scientist Corinne Squire also points out that ‘Africa’s Solution’ is available from South African pharmacies (Squire 2007, 22). Although not backed by independent research and testing, the distribution through pharmacies distinguishes ‘Africa’s Solution’ from other drugs marketed and sold less officially, for example, by street vendors or from home stores as in Irene’s case. Dr Barnard himself says that it was his intention to produce an immune-booster for ‘the indigenous people of this country’ (198) when he realised that there was ‘no good vitamin preparation on the market for the lower-income groups’ (198). With this comment, he presents himself as a benevolent manufacturer concerned with the under-privileged population of South Africa. To use McGregor’s words, he stages himself as a ‘philanthropist’ (200) when he stresses, ‘I started Bermins and I put all my money into it. I started it mainly to help the government and help the people’ (200). He feels ‘mildly embarrassed by the grandiosity of his product’s name’ (197). By bringing together different aspects and voices, McGregor makes sure that his humanitarian self-image does not remain uncontested. She points out that ‘Bermins was doing very well for Dr Barnard. Even though it was only three years old, turnover was already five million a year and growing at the phenomenal rate of 25% a month’ (201). The journalist includes the sales figures and evaluates them with the effect that the readers do not lose sight of the fact that Dr Barnard is a well-educated and privileged Afrikaner. Making much money with his products, he is less charitable and selfless than his self-presentation suggests. Dr Barnard himself undermines his position when he tells McGregor that ‘he expected turnover to increase to Rand 5 million a month by the end of 2005’ (201). It is this exceptional progress that arouses McGregor’s interest. Trying to find reasons for Bermins’s success, she discovers that the steady increase in turnover mainly results from many big companies that buy the immune-boosters for their workers (201). Trying to explain why the corporations buy this particular remedy rather than one of the many others that are on the market, McGregor argues that ‘the very public support given by the Minister of Health, Manto Tshabalala-Msimang’ (201), is the cornerstone of Bermins’s growth. At a talk in Cape Town, the nurse Tine van der Maas introduced

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‘Africa’s Solution’ to the minister. Apparently, the nurse’s report convinced the minister; thereafter she promoted healthy nutrition and ‘Africa’s Solution’ as a treatment for HIV/AIDS. As a leading politician, she had a voice and presence in the media so that her recommendations had great influence on the public perception of AIDS interventions. Due to the minister’s advice, Fana Khaba’s AIDS counsellors, Angie Diale and Masi Makhalemele, have used ‘Africa’s Solution’ themselves (201). As AIDS-educated people who support antiretroviral treatment and who are sceptical of alleged cures like ‘Amazing Grace’, their example makes apparent how much power public figures can have in influencing people’s opinion and behaviour. Dr Barnard discusses the efficacy of ‘Africa’s Solution’ in carefully vague terms. He refers to the experiments conducted by Tine van der Maas to support his points, but his claims have not been backed by independent research. Although curing is an issue in the company’s guiding philosophy, the immune-boosters are not presented as a direct cure. Instead, healing powers are said to lie primarily in the body itself and the remedies are to enable the body to ‘fight disease and cure itself’ (198). In the company’s pamphlet, people living with HIV/AIDS are advised to take ‘Africa’s Solution’ as a life-long medication, in addition to a special mixture of grated lemon and olive oil. They are also warned that the ‘food supplements do not replace any medication prescription of a doctor’ (200). These instructions indicate how careful the Bermins Company is in operating in the AIDS medication industry. Dr Barnard does not dispute the necessity or efficacy of antiretrovirals, but says that people living with HIV/AIDS only ‘need the anti-retroviral drugs in the initial stage to get the body in charge of the virus’ (200). He considers antiretrovirals ‘a solution but not the solution. If you repair the body, if you get the biochemical reactions of the body functioning properly, you wouldn’t need anti-retrovirals for a long time. Africa’s Solution is developed in a scientific way to do just that: to repair the body’ (200). Again, Dr Barnard does not actively call ‘Africa’s Solution’ a cure, but says that it is meant to ‘repair the body’. One could argue that the choice of words is of no relevance because the outcome is the same, namely an improvement in health. Yet, the verb ‘to repair’ stresses the mechanical process, emphasising the biochemical approach. By pointing out the scientific development of ‘Africa’s Solution’, Dr Barnard underscores its supposedly high quality, setting it apart from ‘quack’ remedies. Dr Barnard is not very territorial because he considers both antiretrovirals and ‘Africa’s Solution’ as valid answers to HIV/AIDS. One might therefore get the impression that his statements cannot be located in the framework of the healing myth. Nonetheless, he can be said to contribute to the construction of ‘Africa’s Solution’ as an AIDS cure. Due to his scientific training and rhetoric, he seems to be unbiased. Analysed closely, however, Dr Barnard’s a priori assumptions about

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antiretrovirals can be unmasked and, contrary to his humanitarian selfimage, Dr Barnard makes a huge and rapidly growing profit because Bermins has become a leading company in the South African market for natural remedies. Tine and Nelly van der Maas: Promoting ‘Africa’s Solution’ Promoting a treatment strategy that is oriented towards healing rather than curing, Tine van der Maas and her mother Nelly take care of people living with HIV/AIDS in South Africa. They advocate a nutritional intervention consisting of lemon, garlic, olive oil, ginger and ‘Africa’s Solution’ (206). Apparently, they were sent personally by Manto Tshabalala-Msimang (5) to treat Fana Khaba with this special diet. Still, Tine’s role and involvement go further as she acts as his minder: she takes care of him, she feeds him, she helps him get some exercise, she changes his nappies (5-13), in short, she does everything in an attempt to restore his health. Tine van der Maas is a 49-year-old nurse and her mother Nelly a 69-year-old social worker. Unlike Irene, they are not attributed the title of Doctor but are mainly referred to by their first names. They use their status as a strategy to play down the difference in power between themselves as white, privileged women and the general population, the target group of their programme. They also convey their self-image in their choice of words when, for example, describing the impact of the African potato, one of the ingredients of ‘Africa’s Solution’, on the immune system. Normally, your white blood cells have a gun, and when an infection enters the body they shoot it … poof, poof. With the African potato your white blood cells have an AK-47. Now when an infection enters the body they shoot … rattattattattattatat. It makes the white blood cells much stronger. (207)

Rather than using a medical register, they employ interdiscursive elements such as war metaphors and personifications as well as onomatopoetic expressions imitating the sound of gunfire, thus making sure that people do not need any special knowledge or training to understand their explanations. Whereas Dr Barnard is careful about actively advertising ‘Africa’s Solution’ as an AIDS cure, Tine and Nelly van der Maas openly promote the tonic’s healing effects and produce a film about their work in KwaZulu-Natal to promote their intervention. Categorising their film as a ‘documentary’ (207) and as ‘evidence of the effectiveness of their method’ (205), they claim to give a ‘truthful’ and ‘objective’ account of the success of their treatment, suggesting that the information is trustworthy. Still, a documentary is an aesthetic construct, the result of a complex production process involving staging, selecting, arranging and editing the individual sequences of the film (Bordwell & Thompson

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2004, 128-46; Borstnar, Pabst & Wulff 2002, 31). Tine and Nelly van der Maas want to have their film broadcast on South Africa’s national public television (205) because they would be able to make their programme known to a large national audience. As a step towards this goal, they made the film accessible online (van der Maas, Power to the People). Referring to their treatment as ‘the Lazarus Programme’ (205), they draw on the biblical story of Lazarus’s return to life (John 11.1-45). Lazarus’s sisters send word to Jesus that their brother is ill. Jesus is delayed on his way to Bethany where he learns that Lazarus is dead and was buried four days prior to his arrival. Nevertheless, Jesus assures the sisters that their brother will come to life again. Opening the grave and calling out to him, Jesus raises Lazarus from the dead. The resurrection is witnessed by the sisters as well as by some Jews. Due to this incident, the Jews are convinced of Jesus’s power and start to believe in him. This intertextual reference suggests that, through the women’s treatment, people living with HIV/AIDS will be able to rise from the sick bed and return to everyday life. Claiming a position similar to Jesus’s in the biblical story, Tine and Nelly van der Maas characterise themselves as powerful healers. By drawing on a biblical story, they place their work in a Christian framework, implying that compassion and altruism are their motives for helping others. Since many South Africans are Christians, it is very likely that many of them – regardless of their age, gender, race or education – are familiar with the story and therefore able to understand the positive connotations of the term ‘Lazarus programme’. Tine and Nelly van der Maas have maintained repeatedly that they do not turn a profit when promoting ‘Africa’s Solution’ or their special diet. They even claim ‘poverty’ (208), to quote McGregor’s ironically used term, declaring that they have taken money neither from the government nor from Bermins (208). In spite of their assertions, however, there have been rumours that they receive a cut from the sales of ‘Africa’s Solution’ (217; Squire 2007, 23). One of their supporters, Kim Cools, claims that Tine receives Rand 1 for every bottle she sells (217). What seems to be a very small share can easily turn out to be a regular income when taking into consideration the tonic’s great market share. Working on commission and holding a financial interest in ‘Africa’s Solution’ can also explain their efforts in trying to get as many people as possible on the treatment. Similar to Irene’s prescription of ‘Amazing Grace’, Tine and Nelly van der Maas put everyone on their programme, regardless of the individual ailments (209). As in the cases of Irene and Dr Barnard, the rumours about their commercial profit undermine their altruistic motives and expose the favourable construction of their self-image. Kim Cools and Tine van der Maas no longer cooperate with each other because they have fallen out over money (217). Without going

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into detail, the dispute illustrates how central financial issues are to the programme, albeit a supposedly humanitarian undertaking. Tine and Nelly van der Maas: Advocating the Concept of ‘Choice’ Even though he does not regard them as the only or best ‘solution’, Dr Barnard recognises the value of antiretrovirals, at least in the initial stages of the syndrome, whereas Tine and Nelly van der Maas voice strong objections to the therapy, emphasising that many people have become resistant to the drugs and suffer from severe side effects (210-11). Supporting Manto Tshabalala-Msimang’s stance, Tine and Nelly van der Maas criticise that people living with HIV/AIDS are not given ‘a choice’ (210). They claim that South Africans are not (adequately) informed about alternative remedies, but directly put on antiretrovirals. While they seem to argue for an empowerment of people living with HIV/AIDS and for informed decision-taking, these supposedly ‘innocent’ arguments resonate with their own agenda. Endorsing the concept of ‘choice’, they construct a basis for promoting their alternative medication which has been eclipsed from standard biomedical treatment approaches. Tine and Nelly van der Maas’s scepticism about the established HIV/ AIDS medication extends to AIDS science in general. Sketching her perspective on the widely accepted understanding of the infection, Nelly van der Maas says, ‘People believe HIV leads to Aids, Aids leads to death. You get the propaganda from TAC saying that unless you take anti-retrovirals you will die’ (210). Classifying the policy of the Treatment Action Campaign as ‘propaganda’, she suggests that the activists spread false or biased information in order to ‘misrepresent’ the infection and to ‘misinform’ people. Her statement implies that there are ‘right’ and ‘wrong’ conceptions of the infection, with TAC advancing ‘incorrect’ ones. She herself, by comparison, does not present the connection between HIV and AIDS as an established fact. Using the verb ‘to believe’, she suggests that many people think that the virus causes AIDS but that they might be mistaken. Nelly van der Maas thus voices the key argument of AIDS dissidents who question the virology of HIV/AIDS and claim that the symptoms attributed to the syndrome are most likely due to malnourishment. Not only does Nelly van der Maas express this point of view; in a meeting of supporters of ‘Africa’s Solution’ attended by McGregor, various members of the audience mention TAC ‘repeatedly and bitterly as the enemy, the tool of Big Pharma, the pharmaceutical mafia, well funded, powerful and ruthless’ (204). Both the remarks of the audience and McGregor’s evaluation of the way in which these comments are brought forward, namely ‘repeatedly and bitterly’, show how suspicious and critical the supporters of ‘Africa’s Solution’ are of the activists. This negative understanding strongly challenges TAC’s generally favourable public

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perception and media representation. While the organisation has been known for its campaigns to make antiretrovirals accessible by taking on pharmaceutical companies and patent laws, the audience here identifies TAC as an opponent. The discrepancy shows that the organisation has come a long way since its foundation as a grassroots organisation in 1998. TAC has become such a well-established institution with professionally operating structures and much influence that groups like the supporters of ‘Africa’s Solution’ construct negative images about it. Setting themselves apart from TAC, the group aims at presenting its own practices in a more favourable light and, ultimately, at selling its own remedies. In a concluding paragraph about Tine and Nelly van der Maas, McGregor pictures the two women as ‘lady missionaries’ who have ‘no place in a modern, democratic South Africa’ (212). The journalist thus characterises their attitudes and behaviour as inappropriate and outdated. Throughout her discussion, McGregor is much more critical of the two women than she is of Dr Barnard. Writing about the latter in one chapter and the two women in another, the journalist differentiates between their opinions, motivations and benefits. While this distinction is helpful, it is even more productive to bring both cases together, since Dr Barnard and Tine van der Maas take on different roles in marketing ‘Africa’s Solution’. Dr Barnard stages himself as a scientist who hesitates to openly call the remedy an AIDS cure, and as biochemist who stresses the mechanical processes within the physical body. Representing the curing paradigm, his position differs from the healing strategies performed by Tine and Nelly van der Maas. Unlike Dr Barnard, they interact directly with people living with HIV/AIDS and actively market the tonic as an AIDS cure. Still, both Dr Barnard and Tine and Nelly van der Maas mythify ‘Africa’s Solution’: although they convey supposedly ‘harmless’ ideas about immune-boosters, their statements are informed by naturalised ideological presuppositions. McGregor also criticises the behaviour of those who tolerate and thus indirectly support their practices: I thought it a source of shame for us that they [Tine and Nelly van der Maas] were given such ready access to desperately ill people to practise their potions on. Like many white people before them, they were using Africa’s poverty to create a playground for themselves where they could play out their self-aggrandising fantasies. In Holland, they would not have been allowed to experiment on humans. Surely South Africans deserved the same respect? (212)

Using the pronoun ‘us’, McGregor includes both herself and the readers in her criticism; and through the stylistic device of a rhetorical question, she encourages critical reflection. Drawing on the context of colonialism, McGregor compares Tine and Nelly van der Maas to

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‘many other white people before them’ who have exploited Africa and its peoples. In so doing, she unmasks the healing myth as a means to exploit infected people financially and emotionally by selling them medication alleged to be their cure. Fana’s trust in the alternative remedies and its promoters has exemplified his ‘susceptibility to white miracle-peddlers when he was dying and desperate’ (137). Following the ideology of ‘white supremacy’, Africans are willing to believe that whites might be able to cure HIV/AIDS. McGregor gives another explanation for the openness of the Khaba family towards white people. In Watchtower, the official publication of the Jehovah’s Witnesses, the people who have been saved are mostly depicted as white (137). Presented as the saved ones, whites are characterised as benevolent, as charitable and as acting according to God’s will. Bearing in mind that Lydia Khaba is a devoted Jehovah’s Witness, these representations might have shaped the family’s favourable image of white people. Sangoma Nene’s Herbal Medication McGregor qualifies her account by relating that Fana Khaba not only trusts white people in medical issues but also frequents African healers such as Sangoma Nene who practises in Soweto. Fana Khaba’s friend, Satch, is sure that Nene can help the DJ because he was able to heal Satch’s stomach problems. Through his warm recommendation, Satch contributes to the positive public image of the sangoma and his healing powers. As in the case of ‘Amazing Grace’ and ‘Africa’s Solution’, former patients (as well as their families and friends) spread the information about alternative remedies, convinced that they have restored them to health. When the journalist interviews Nene about Fana Khaba, he asks her to call him ‘Mr Magic’ (192). This nickname pays tribute both to his sense of humour, as McGregor points out, and to his powers, coded as influential and invisible. Sangoma Nene explains that he receives his healing powers from God and that the ancestors function as mediators, passing on God’s instructions concerning the ailments and treatment of a patient. He works as a healer and as a pastor in an evangelical church: his garage serves both as a consulting room and a church. Traditionally, the healer relies on strong herbs, but Fana Khaba is too weak to stomach this medicine because of his diarrhoea. Instead, Sangoma Nene makes Fana Khaba drink blessed water taken from a river. As for treating HIV/ AIDS, the healer says, ‘The doctors haven’t found a cure for this. The anti-retrovirals can only hold the illness. They can’t cure you. But on the traditional side, there is nothing that can’t be cured. We get rid of the illness by getting rid of the poison’ (194). Nene’s statement indicates that he thinks of the virus as a poison sent by evil forces. The social scientist Adam Ashforth reads the epidemic in similar terms. He stresses that this conceptualisation of HIV/AIDS should

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not be mistaken for irrationality or superstition because it is ‘entirely plausible for people suffering from diseases related to AIDS to interpret their afflictions as a form of witchcraft’ (Ashforth 2002, 123). Given its medical record, it becomes evident why HIV/AIDS is prone to be located within this framework (ibid., 128): the infection is still not fully understood; the list of possible symptoms is long; the extended latency period makes it hard to identify the source of the infection; the time between the infection with HIV and the advent of AIDS varies greatly, as does people’s life expectancy with the syndrome. Reading HIV/ AIDS in terms of witchcraft does not imply that the virus cannot also be understood as sexually transmitted. People can accept that the virus is transmitted through sexual intercourse with an HIV-positive partner but ‘it does not necessarily follow that the origin of the misfortune lies in that particular person’ (ibid., 132). Instead, the witchcraft causing the infection could have been sent by any acquaintance ‘motivated by jealousy and hatred into malicious action’ (ibid.) against this particular person. Central questions that arise from this complex record – Why are people infected? Who is responsible? – can be answered within the witchcraft paradigm (ibid., 127-8), presuming a malicious force manifest in isidliso, isiZulu for ‘poison’ or ‘poisoning’ (ibid., 129).11 This understanding also shapes the treatment strategy: it takes African healing practices to tackle isidliso, for biomedical medication cannot cure the poisoning. Within the witchcraft paradigm of suffering and misfortune, there is no such thing as an incurable disease. For if illness and death are caused by the action of others, healing is a matter of a struggle between the curative and the restorative powers of the healer on the one hand and those of the evil forces on the other. As in any power struggle, success cannot be guaranteed, but neither can failure. (ibid., 131)

Ashforth’s concepts can be made productive for analysing the practices of Sangoma Nene. With his traditional understanding of healing, Sangoma Nene believes that all diseases can be treated and that all people can become healthy again. Contrasting his method with that of medical doctors, Nene focuses on the source of the illness, rather than its physical symptoms only. For this reason, he considers himself to have a chance in healing people. In comparison with Irene or Tine and Nelly van der Maas, he is not as absolute about the success of his alternative treatment. He stresses that patients should come and see him in the early stages of the syndrome; otherwise, the patients 11

Ashforth goes on to analyse the social consequences suspicions of witchcraft can have. Making people responsible for misfortune and illness generates conflicts, and possibly the desire for revenge, within families, communities and society at large (Ashforth 2002, 133-5). As for the political implications, he studies what challenges the democratic government is faced with due to this witchcraft paradigm (ibid., 135-9).

162 Breaking the Silence have ‘a fifty/fifty chance’ (194). As his comments illustrate, he is well aware of the fact that his treatment might fail, in which case patients would have to move on to the next healer whose powers might be able to overcome the evil forces. In her relatively short chapter on Sangoma Nene, Liz McGregor only discusses his ancestral calling as a motivation for healing. This depiction marks a major difference in comparison to her investigations into other alternative remedies. It suggests that commercial interests, presented as a highly problematic aspect of the healing myth, are not so much an impetus for Sangoma Nene as they are for Irene, Tine and Nelly van der Maas, as well as the manufacturer Dr Barnard. Careful not to moralise but to create a critical distance, McGregor contextualises and evaluates her investigation. Self-critically, she points out that there are many ways in which people instrumentalise Fana Khaba and others living with HIV/AIDS.

6

Literary Genres

Life Writing In the mid-1990s, the publication of AIDS memoirs reached a peak (Demmer 2007, 295). With few exceptions, however, they were written by white US-American homosexual men who offered insight into the lives of people who were affected by what was then considered a terminal illness. With the introduction of antiretrovirals, these ‘chronicles of dying’ (ibid.) lost in relevance because the number of AIDS-related deaths was in decline in North America and Europe. In South Africa, however, the situation is different; the epidemic has long been a taboo topic and treatment is not as widely available. Exploring their lives with HIV/AIDS, Adam Levin’s AIDSAFARI (2005) and Edwin Cameron’s Witness to AIDS (2005a) render the virus and its effects visible to the public. In the art book Long Life: Positive HIV Stories (2003), the Bambanani Women not only write about their experiences and lives but also express themselves visually, mainly through painting and photography. ‘Life writing’ is an umbrella term referring to a variety of texts about the ‘self’ or ‘individual’. One reason for using the term ‘life writing’ in this study becomes apparent in the term’s connotation: unlike ‘autobiography’ or ‘chronicles of dying’, the term spells out the writers’ interest in and focus on staying alive. Another major reason is its inclusiveness. In her introduction to Essays on Life Writing, Marlene Kadar defines ‘life writing’ as a category of ‘texts that are written by an author who does not continuously write about someone else, and who also does not pretend to be absent from the […] text himself/herself’ (Kadar 1992, 10). As this working definition shows, life writing is a broad generic term. In comparison, ‘autobiography’, which has been of central concern in the western canon (Wagner-Egelhaaf 2005), can be understood as a more exclusive alternative. The literary history of autobiography has centred on dominant, white and male, history whereas non-white and/or female voices have been suppressed and undervalued (Kadar 1992, 7). Life writing, however, allows for a broader scope of texts and perspectives; and this diversification of voices is also acknowledged in The Uses of Autobiography (1995), a

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collection of essays edited by Julia Swindells. Even though Swindells does not employ the term ‘life writing’ but stays with ‘autobiography’, she supports the arguments about the new and radical uses of the genre: Autobiography is now often the mode that people turn to when they want their voice to be heard, when they speak for themselves, and sometimes politically for others. Autobiography now has the potential to be the text of the oppressed and culturally displaced, forging a right to speak both for and beyond the individual. People in a position of powerlessness – women, black people, working-class people – have more than begun to insert themselves into the culture via autobiography, via the assertion of a ‘personal’ voice, which speaks beyond itself. (Swindells 1995, 7)

The term life writing can and has been used as a category to classify autobiographical writing by marginalised social groups, defined, for example, by race, class or gender. As ‘the text of the oppressed’ with ‘a “personal voice”, which speaks beyond itself’ the narratives not only speak for an individual but also for a collective. ‘Whereas Western European educated man can both speak for his ideological environment and be seen to represent it, women, black people and working-class people, because of their political position, are not placed to conceal the tensions between consciousness and the social world’ (ibid., 4). These life narratives differ from western middle-class autobiographies because the experiences described are not discussed in terms of a universal status but read as representative of a particular interest group. Postcolonial studies is generally concerned with the inclusion of marginalised voices and with the analysis of literary (self-)representations (as discussed in Chapter 2). Life writing’s potential to provide insight into diverse and hitherto socially and culturally unrecognised positions is also the reason why this genre has been of particular significance in postcolonial literatures (Döring 2008, 65; Moore-Gilbert 2009). In South Africa, life writing has become a highly productive field since the abolition of apartheid in 1994 (Michael & Nuttall 2000). Compared to earlier decades in which autobiographies were often banned, the political transition has allowed for a plurification of voices; it has legitimised and supported the negotiation of identities.1 However, the variety of subjects and perspectives by no means solves the problem of ‘difference’, as Linda Anderson is careful to point out, because ‘the claim to speak for others is always problematic and can also elide further differences under an assumed representativity’ (Anderson 1

Particularly in the context of the Truth and Reconciliation Commission (TRC), memoirs, testimonies, confessions and other personal narratives have flourished, especially of those who were silenced during apartheid. With Archbishop Desmond Tutu as its chairman, the TRC produced a report on the human-rights abuses that occurred between 1960 and 1994. This report is based on public hearings in which victims of the apartheid regime could tell their stories and in which victimisers were questioned about their offences.

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2001, 104). In spite of its empowering quality, the identification of a subject as a spokesperson for a marginalised social group runs the risk of creating generalisations which are difficult to sustain. A contentious question that has often been asked in the study of autobiographical texts concerns the issue of ‘truth’ and ‘authenticity’. Following this mode of reading, the autobiographical text would be considered a ‘historical document’ which refers to a ‘social reality’ existing ‘outside’ of the text. However, the preoccupation of critical writing on autobiographical texts has also shifted over time. As Sidonie Smith explains, it has moved from ‘the life (bios), to the self (autos), to the text (graphe) of the autobiographer’ (Smith 1987, 1). Emphasising ‘life’, nineteenth-century literary critics were concerned with questions of the ‘truthfulness’ of the autobiography. With the beginning of modernism they became interested in ‘autobiography as a creative, interpretive act’ (ibid.), analysing the relation between self and society as expressed in the text. Influenced by the turn to postmodernism, which has ‘challenged the referentiality of language and authenticity of the self, rejecting notions of intentionality, truth, meaning, and authority’ (ibid.), literary criticism has come to focus on autobiography as the ‘play of signification’, on its ‘artifice of identity’ (ibid.), on the ‘textual self’ (Rusk 2002, 4). Adam Levin actually makes a point of reflecting on the ‘authenticity’ of his own memoir AIDSAFARI: ‘And there is no point in me writing a memoir that is not the truth, the whole truth and nothing but a bunch of reconsidered lies’ (Levin 2005, 215). As the ironic play with this intertextual reference to the oath sworn in a court of law illustrates, literary critics are not the only ones who consider the ‘play of signification’ in life narratives. AIDSAFARI: Adam Levin’s Representation of HIV/AIDS Adam Levin is a thirty-year-old author and journalist. His book AIDSAFARI, first published in 2005, is, as the sub-title spells out, A Memoir of My Journey with Aids. Written in journal form, it describes his life as a white, male, homosexual South African with opportunistic diseases. In chronological order, he records incidents over a two-year period, from April 2003 to June 2005: from his decision to take an AIDS test to a time when he starts to adapt to living with the syndrome or, in his own words, ‘a journey from paralysis to gradual agility’ (Levin 2005, xii). In his AIDS memoir, Adam Levin criticises that, ‘burdened by stigmas and fear, Aids had hidden itself’ (146). In spite of the large numbers of people fallen ill with AIDS, Levin believes the sick ones to be invisible. He himself feels as if he were ‘locked in a closet’, as if he ‘was the only person in the world with Aids’ (146). Keeping a log of his time in the sick bed and subsequently publishing it as a book makes him visible. Yet, before Adam Levin can even start to think about such

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a personal AIDS story, he himself has to overcome his fear and his tendency to keep silent about living with the syndrome. Throughout the book, Levin self-consciously reflects upon the problems he faces with writing and publishing an AIDS memoir. Hoping that ‘it could be useful’ (47, 78), he wants to write about living with the virus but wonders how to do it, especially how to bring his memoir to an end (109, 205) and how to ensure that people care to read it (62). Frequently, he doubts the value and significance of such a text (x, 108), which is why he even stops working on the book for six months (107). He also struggles with his fears of personal exposure (xi). As a first step, he has to learn to voice the word ‘Aids’, which is still hard for him in the period following the diagnosis: I remember how frightened I’d been to say the word in the beginning, how I’d always hidden it behind its safe, polite acronym: HIV. But I forced myself. I said it in shopping malls, around lunch tables, at family gatherings. Aids, Aids, Aids, I said. And the more I said it, the less frightening it seemed, for the more familiar a word becomes, the closer one comes to its meaning, and the easier it becomes to live with. (165)

By saying the word ‘Aids’ repeatedly in different surroundings and in the presence of other people, he manages to break with the silence, shame and stigma surrounding the syndrome. Being able to name it makes it less frightening because it can be addressed, an important part of ‘coming to terms’ with it. Levin’s spelling of ‘Aids’ supports this process of familiarisation with the syndrome. Although not resulting in a shift in meaning, the minuscule-spelling suggests that the term is not treated as an acronym but as a neologism, as the linguist Thorsten Eitz explains (Eitz 2003, 82-90). Since ‘Aids’ is easily lexicalised and integrated into written English, neither the word nor the syndrome are particularly emphasised. In the end, when publishing the book, Adam Levin is very outspoken about the symptoms, diagnosis, treatment and restoration; his daily trials of living with the syndrome are presented in a very direct way. Judging from his comment quoted on the back cover of the book, Pieter-Dirk Uys’s fears do not materialise. ‘I’d thought at first that this would be a depressing book, but this was furthest from my mind as I read, for the second time, Adam Levin’s remarkable memoir of horror, humour and hope.’ AIDSAFARI works in two different ways. On the one hand, it is such an open and detailed account that it provides the reader with an intimate knowledge about living with HIV/AIDS. Organised chronologically, the reader is invited to follow Levin closely through these two years. On the other hand, Adam Levin manages to create a textual self that allows for some distance and reflection. Because of the aesthetic elements employed – especially mockery, sarcasm and the use of tropes – the life narrative does not become depressing.

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Adam Levin constructs himself via representing his body affected by HIV/AIDS. He sheds light on various facets of living with the infection, including his early attempts to close his eyes to possible AIDS symptoms such as dramatic weight loss, night sweats, shivers and pain in his feet. Encouraged by his parents, he overcomes his fear and sees a doctor for a full medical check-up including an AIDS test. He shies away from taking the test, but when it comes back positive he admits, ‘It’s not really a surprise for me. I guess I’ve known for a while’ (16). His behaviour shows how he fools himself: even though he can see the symptoms and knows that they can be indicative of HIV/ AIDS, he is unwilling to read them as such and denies them.2 Apart from those early symptoms, his blunt description of the decaying body includes a long list of other ailments: diarrhoea, bedsores, neuropathy leading to strong pain in his feet, Kaposi’s sarcoma, tuberculosis and stomach cramps as a result of his morphine addiction. A preliminary summary of his medical history reads like this: This was the bottom line: They tell you the worst. The very worst. And you find yourself face to face with your greatest fears – not only are you HIV-positive, you have – capital letters – AIDS. A couple of months later, you find out you’ve got fucking cancer. A month after that, they toss in tuberculosis. You’ve lost a third of your body weight and your damaged nerves keep you in excruciating pain 24/7. You can hardly stand, let alone walk. Your cancerous eye is bloodshot, and your lesions sting – on your arm, on your dick. And you get other pains in weird places. Your hair starts falling out like autumn leaves and you look like some hobbling corpse. (102)

The unabashed openness about his health status is supported by his choice of language. Medical terms derived from Greek or Latin would be more precise in describing his ailments. Rather than using such an abstract and specified register, Levin employs a more informal style which brings his medical record closer to the reader. Writing in the vernacular he uses swear words like ‘fucking’, the vulgar and sexually connoted term ‘dick’, everyday expressions like ‘24/7’ as well as a poetic comparison between his hair and autumn leaves in order to illustrate his description. By using everyday language from which the readers are not alienated, he moves them emotionally, though not melodramatically. While Levin generally prefers to write about ‘Aids’, he uses the majuscule-spelling in this summary and gives a metalinguistic comment of how to read (out) and stress the acronym: ‘you have – capital letters – AIDS’. Through this self-reflexive instruction, 2

A similar behaviour can be found among fictional characters in novels. In Sindiwe Magona’s novel Beauty’s Gift (2008), Beauty’s friends only begin to read Beauty’s symptoms as signs of the syndrome in retrospect, after Beauty’s funeral. Likewise, Abeeda Ariefdien, the protagonist and narrator of Rayda Jacobs’s novel Confessions of a Gambler (2003), deceives herself until she later admits that she was unwilling to read her son’s symptoms as indicators of AIDS-related opportunistic diseases.

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similar to a stage direction, the primary focus is shifted. No longer is Levin’s individual health status at the centre of attention, but rather the (largely negative) connotations of the syndrome in general, as, for example, produced and perpetuated in the media. The enumeration of diseases and the speed and lightness with which they are added to his medical record when, for example, TB is also ‘tossed in’, exemplify the sarcastic tone of Levin’s writing. The following mocking remark is another case in point: ‘At the time I begin my treatment, my viral load is 429 000, which, I must point out, has never been a lucky number for me’ (28). Thus, Levin uses a tone which does not have a depressing effect but allows for distance. Furthermore, the long quote above is one of the few passages written in the second-person singular – a writing mode with which Levin creates a distance between himself and his textual self. At the same time, he directly addresses the readers and draws them into his narrative. Levin’s role and position as a patient as compared to a medical practitioner can be read against Michel Foucault’s influential ideas on the status of doctors. In his work The Archaeology of Knowledge, Foucault explains that medicine has been shaped by a long tradition of knowledge and power. The status of doctor involves criteria of competence and knowledge; institutions, systems, pedagogic norms; legal conditions that give the right – though not without laying down certain limitations – to practise and to extend one’s knowledge. […] This status of the doctor is generally a rather special one in all forms of society and civilization: he is hardly ever an undifferentiated or interchangeable person. Medical statements cannot come from anybody; their value, efficacy, even their therapeutic powers, and, generally speaking, their existence as medical statements cannot be dissociated from the statutorily defined person who has the right to make them, and to claim for them the power to overcome suffering and death. (Foucault 2002, 55-6)

Familiar with the technical register, with the institutionalised spaces with the special fields of knowledge and particular practices, the doctor takes on the subject position in the medical discourse, treating the patient – and, informed by a biomedical approach, the patient’s body in particular – as an object. The doctor’s status reinforces and perpetuates his/her power over the patients who, in turn, are ascribed to a less powerful and less active position, submitting themselves to the doctor’s proficiency. Through his/her trained and well-informed gaze, the doctor is able to ‘read’ the signs on and in the patient’s body and to identify them as symptoms, as Foucault points out in his work The Birth of the Clinic. It is also this gaze which sets a mere observer apart from the medical doctor, who is backed by a medical institution and apparatus (Foucault 1973, 89). In the late eighteenth and early

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nineteenth centuries, significant changes took place in medical studies. Medical institutions were reorganised; clinical methods were revised; specified medical registers were formed, and the medical gaze came to be understood as including various senses, seeing as well as hearing and feeling. Supported by the medical apparatus, the ‘medical gaze embraces more than is said by the word “gaze” alone. [...] The medical gaze is now endowed with a plurisensorial structure. A gaze that touches, hears, and moreover, not by essence or necessity, sees’ (ibid., 164). No longer are symptoms considered to be ‘given’ or, in Foucault’s terms, the ‘sign no longer speaks the natural language of disease; it assumes shape and value only within the questions posed by medical investigation’ (ibid., 162). With the help of his/her senses, knowledge, training and medical technology, the doctor has to identify, analyse and classify the symptoms during the examination of and conversation with the patient. It is this medical gaze with its underlying power relations to which Levin is subjected. Through the binary opposition ‘you v. they’ he clearly sets his textual self – and by implication also the reader – apart from the doctors. However, employing a sarcastic tone to describe the medical examination and its results, he plays down the difference in power. Rather than submitting himself to an inferior position, Levin wins back the power to define himself and to write about his life with HIV/AIDS. Through a rhetoric that is characteristic of interdiscursive texts, Levin mediates between lay readers of his memoir and the medical topic that he discusses. This writing style is in keeping with his aim to make his narrative ‘useful’ (47, 78) in breaking the silence around the virus and in coping with possibly threatening and intimidating situations. Levin’s detailed description of the infected body is balanced by an equally clear and detailed representation of his treatment, especially with antiretrovirals. Hardly any room is given to alternative remedies. Levin briefly refers to Manto Tshabalala-Msimang and her advice concerning nutrition; but rather than going into the possible positive effects of these recommendations, he zooms in on the answer of the medical establishment to HIV/AIDS. While taking Nevirapine, one of the earliest antiretrovirals, he suffers from heavy side effects and is soon put on a different medication, a combination of Kaletra and Invirase (24-7). Not only does he provide the names of the antiretrovirals but also concrete features of the drugs he has to swallow twice a day: Three big orange pills first – the plastic rugby ball ones. Then the white oval one – hate the oval, it always sticks. Now the other lot – the yellow one with its weird vanilla flavour. Uggh, the blues. The green oval one. Then the five little blue and yellows – they’re the easiest, so I leave them till last. Done. (4)

By describing the colour, shape, number and taste of each of these

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different capsules and by comparing them to everyday objects like ‘plastic rugby balls’, he paints a more vivid picture than by giving the abstract and pharmaceutically correct names only. Again, in an attempt to integrate knowledge of medical special discourse into everyday contexts, he combines two different registers: the technical jargon of medicine and pharmacy with common imagery. In order to do away with widespread cultural constructions of the epidemic, he also explains how antiretrovirals work. Even if the drugs are able to restore his health, they cannot reverse his contraction of the virus, they ‘cannot destroy the HI virus’ (27). Since he explains his medication in detail, his memoir can be said to function as a means of AIDS education. Although HIV/AIDS is not represented as a ‘fatal’ condition, it is shown to be a serious infection which cannot be healed and which is not easily dealt with. The Individual To relate these personal experiences of HIV/AIDS, Adam Levin uses the first-person singular self-reflectively so that the focus on himself as an individual is stressed, an emphasis which he considers appropriate. ‘“I”, which was, after all, where it had all begun, and where it all ultimately ended up. At I’ (xiii). This focus on ‘I’, on a particular ‘individual’ is also supported visually by a large photograph of Adam Levin, shot by a friend for an exhibition of people living with HIV/AIDS and reproduced in his AIDS memoir. The photograph visually provides another insight into his life; showing him in a medium close-up with a naked chest so that his thin and fragile body frame is exposed, it goes far beyond the ‘standard’ author’s press photography and adds to the linguistic representations of his body. The cover design of the book in the original Zebra Press edition also takes up the individual as the centre of attention (see Illustration 6.1). Suggesting that it depicts Levin’s draft of the Preface, the cover displays a handwritten and thus individualised text in a grey pen or pencil on a white background, resembling a white sheet of paper. The text is, in fact, the Preface but for some slight variations. From the beginning, the memoir is thus personalised. The title of the book as well as the author’s name are presented in irregularly drawn letters suggesting that they are handwritten rather than printed. Furthermore, the letter ‘i’, both in ‘AiDSAFARi’ and in ‘LEViN’, is printed in red and in lower case letters, in contrast to the black majuscules used otherwise. Thus ‘i’ – or ‘I’ – is emphasised, a reading which is also supported in Levin’s Preface. Thinking about the title, he first came up with ‘2’ both as a reference to the extremely low cell count when he was diagnosed with AIDS and as a metaphor for being given a second chance. Yet ‘“2” seemed glaringly inappropriate for a journey that had been so distinctly solo’ (xi). In an attempt to capture the personal

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6.1 Adam Levin, AIDSAFARI, 2005. Cover of Zebra Press Edition. (By permission of Zebra Press)

dimension, he coins the term ‘Aidsafari’, derived from the Swahili word for journey, ‘safari’ (xii). The neologism is also reminiscent of his first book, The Wonder Safaris (2003), in which Levin relates his travels through several African countries. This intertextual reference highlights both the similarities of and the differences between the two books and journeys. While both depict new experiences and changes, the AIDS safari is used metaphorically, as it ‘had not required a single step. It had been the journey in my head and through every aching nerve in my body. The journey inside’ (xii). To illustrate his state of body and mind, Levin uses the journey metaphor throughout his AIDS memoir, thus emphasising the unknown terrains he has explored and the new impressions he has gathered. Even though Levin follows the traditional topos ‘Life is a journey’, frequently used in autobiographies (Christen 1999), he also plays with and alienates it by using the word

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‘safari’, which, in English, does not connote simply any voyage but a journey in Africa to see and/or hunt ‘wild’ animals. Nevertheless, Levin also struggles with the limited scope of his memoir. ‘I wrestled with the egotism of writing sixty thousand words about myself, and I doubted its value’ (x). Although the clear emphasis on the individual is one of the key features of life writing in general and although it seems to be justified in this context, Levin also reflects critically on the book, precisely because of its self-centredness. The Collective: White, Male, Homosexual South African Living with HIV/AIDS As a journalist and author well-known throughout South Africa, Adam Levin has a function in society which goes beyond his private life. By openly disclosing his health status, he breaks with the secrecy and shame that nourish the culture of silence associated with HIV/AIDS. The extent of silence becomes clear to Adam Levin when he is first diagnosed with AIDS. Looking for books which might prepare him for what is to come, he cannot find anything because ‘the conspiracy to keep this disease walled in silence had triumphed’ (x). Hoping to ‘chip away at a single brick of that immense wall of silence’ (x), he decides to publish a book on HIV/AIDS, ‘a simple memoir, detailing the daily trials of the disease that so few people seemed at all familiar with’ (77). Through the publication of his AIDS memoir, he might be considered a spokesperson for people living with HIV/AIDS. Following the argument of Julia Swindells outlined above, his memoir might be read as a ‘text of the oppressed and culturally displaced, forging a right to speak both for and beyond the individual’ (Swindells 1995, 7). Both homosexuals – whether or not they are HIV-positive – and people living with HIV/AIDS are marginalised social groups that have been faced with discrimination. Although South Africa is one of the first countries in the world to protect the rights of homosexuals in its constitution,3 homosexuality is still a taboo topic, as is HIV/AIDS. With the help of an AIDS narrative like Levin’s, (homosexual) people living with the virus can assert their subjecthood and make themselves heard in dominant culture. In fact, this voice has been heard. In 2006 Adam Levin won the Sunday Times Alan Paton Award for AIDSAFARI (jointly with Edwin Cameron for Witness to AIDS). Awarded annually, it is a prestigious prize for non-fiction in South Africa; at 50,000 Rand it is South Africa’s financially most profitable award for South African writing in English. Due to this award, the winning memoirs as well as the short-listed 3

§9 Equality subsections 3 and 4 of the Constitution of the Republic of South Africa (1996) read: ‘(3) The state may not unfairly discriminate directly or indirectly against anyone on one or more grounds, including race, gender, sex, pregnancy, marital status, ethnic or social origin, colour, sexual orientation, age, disability, religion, conscience, belief, culture, language and birth. (4) No person may unfairly discriminate directly or indirectly against anyone on one or more grounds in terms of subsection 3.’

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books (including Liz McGregor’s Khabzela) have received widespread media coverage. Speaking out as a homosexual man with AIDS in AIDSAFARI, Adam Levin has contributed to breaking with the underrepresentation of the issue. However, as explained above, there is also a downside to the collective voice. The empowering quality of AIDSAFARI might be deceiving, since the memoir falls short of representing the epidemic. Unlike most South Africans living with the infection, Adam Levin is a white, well-educated man with a good chance of survival. He has access to antiretroviral treatment and his family supports him, both financially and emotionally, as Levin himself emphasises (ix, 17, 50). Clearly, these features mark him as highly privileged compared to the majority of South Africans living with HIV/AIDS since the prevalence of the virus is highest among poor black people living in urban informal settlements (Shisana et al. 2002, 56-61). For these reasons, Adam Levin does not represent the face of HIV/AIDS in South Africa; still, he tries to identify himself with all the other (South) African HIV-positive people. He wants to think of all the people living with HIV/AIDS as closely connected to each other, similar to a large family. I yearned to feel some solidarity with these people. They were my brothers and sisters in this disease. […] I searched for a sense of empathy, but I could not access it. Sympathy, yes – but, somehow, these people seemed as distant and unimaginable to me as they ever had. […] I hoped for some kind of shift or revelation but it never came. (44)

Contrary to his hopes, he has to realise that his privilege sets him apart from the majority. Careful to acknowledge this distance, he differentiates between his idealist yearning and his experience. The focus on a limited social spectrum of the epidemic in South Africa also becomes apparent in Levin’s depiction of other people with HIV/AIDS. Only one woman from a lower class, Elsie, who used to work as his parents’ domestic worker, is discussed in his memoir. When she loses weight, starts to cough and tests positive for tuberculosis, she is suspected of having AIDS (12). She gets sicker and cannot work anymore, whereupon she moves to her sister’s home in a township and dies a few months later, allegedly from poisoning (75-6). Elsie is the only example Levin gives of someone from a less privileged background and whose AIDS symptoms are silenced by her relatives. Otherwise, he relates encounters with well-off people who feel comfortable in disclosing their health status, like Charles and Stephen, two businessmen with AIDS who have recovered under antiretroviral treatment (90-1, 159-63). Even though the readers do not learn much about either of them, the short description makes clear that, unlike Elsie, both have a privileged social background similar to Levin’s. Due to their similarities and shared experiences, Adam Levin feels closely

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related to them. For the first time he experiences the ‘empathy’ (91) he has been hoping for, not just ‘sympathy’. As Adam Levin reflects on the very limitedness of his experiences in living with HIV/AIDS, he does not purport to speak for others, but represents the infection in one of the many ways and voices possible. The sarcastic tone of his narrative stresses that he refuses to be treated as an ‘AIDS victim’. His self-conception most probably also shapes the reading audience. Craig Demmer convincingly argues in his book review that those who are most likely to benefit from AIDS narratives like AIDSAFARI are people with a similar financial and educational background who are interested in personal accounts of living with HIV/ AIDS in South Africa, rather than the majority of HIV-positive South Africans (Demmer 2007, 297). Witness to AIDS: Edwin Cameron’s Representation of HIV/AIDS Edwin Cameron, a judge in the Supreme Court of Appeal in South Africa, wrote about living with HIV/AIDS in his book Witness to AIDS (Cameron 2005a). Unlike Levin’s memoir, Witness to AIDS is not organised chronologically but thematically. In eight chapters, two of which are co-written with Nathan Geffen, a leading member of the Treatment Action Campaign, Cameron discusses personal experiences of living with HIV/AIDS as well as several topics linked with the epidemic in South Africa: the spread of the virus in Africa, governments’ responses to HIV/AIDS, access to and costs of antiretroviral treatment, the role of the pharmaceutical industry and the impact of patent laws. It is a well-researched text, academically footnoted and indexed, with various references to political speeches, court cases, articles, statistics and studies so that it is a revealing account which both includes and goes beyond his personal experiences. Witness to AIDS might be categorised as a typical example of an autobiography in that it includes documentary material to record Cameron’s life and circumstances. However, the text also challenges exclusive features of the autobiographical genre in that Cameron provides diverse perspectives, many of which have frequently been eclipsed from dominant fields of knowledge. Like Levin’s memoir, Edwin Cameron’s account of HIV/AIDS openly displays the virus and its effects right from the beginning. I knew that I had AIDS when I could no longer climb the stairs […]. Two flights, four landings, forty stairs. But on that day in late October 1997 I couldn’t. Each step seemed an insuperable effort. My energy seemed to have drained from my legs. I was perspiring grey exhaustion. My lungs felt waterlogged. My mouth rough and dry. No pain. Just overwhelming weariness. […] My mouth and lungs told me what I didn’t want to know, didn’t need to be told. I had AIDS. Acquired immunodeficiency syndrome.

Literary Genres 175 An accumulation of rare afflictions of the human body. Uncommon lung infections. Unusual cancers. Disabling funguses. (9)

Edwin Cameron knows about the virus and its effects on the body. Unlike Levin in the first symptomatic stages, he is willing to read the signs in and on his body. Although Cameron is not a medical expert, he is able to identify the symptoms so that – at least for his own body – he operates with what Foucault considers the medical gaze. When Cameron suffers from ‘grey exhaustion’, ‘weariness’, ‘waterlogged’ lungs and a ‘rough and dry’ mouth, he realises that he has fallen ill with AIDS-related opportunistic diseases, even before a trained doctor confirms this diagnosis. Also addressed are ‘rare afflictions of the human body’, symptoms of AIDS from which he might suffer in the future. Here the body is represented in its various potential stages: how Edwin Cameron’s body is affected at the beginning of symptomatic AIDS, and how possible future symptoms, similar to descriptions of opportunistic diseases in medical textbooks, might shape the body. In the course of the memoir, Edwin Cameron presents the cornerstones of his medical history: testing positive for HIV, being diagnosed with AIDS and starting with an antiretroviral therapy. Cameron is first diagnosed as HIV-positive in December 1986. Unlike Levin, who decided to take a test, Cameron is caught in surprise because a doctor had sent Cameron’s blood sample for testing without prior consultation and without his approval. Cameron characterises the doctor as ‘my doctor, a well-meaning family friend on the point of retiring from a much-loved practice in Pretoria’ (47). Through the rhetoric of this characterisation, especially the use of the possessive pronoun ‘my’ as well as the positively connoted terms ‘well-meaning’, ‘family friend’ and ‘much-loved practice’, Cameron establishes a connection between himself and the doctor. Yet this episode clearly shows the hierarchy of ‘doctor v. patient’ which is based on their difference in power and knowledge. Cameron is assigned to the passive and subordinate position of the patient who has to cope with the power the doctor exercises – not only over his body, but also over his life and free will. Suffering from opportunistic diseases, Cameron is diagnosed with AIDS in October 1997. Guided in his judgement by widespread cultural constructions of the infection, the radiologist first struggles with the diagnosis. A judge, white and affluent, properly dressed in a suit, after a working day at court, Cameron neither seems ‘AIDS-wasted’ (18) nor does he ‘“look” like someone with AIDS’ (19). Unable to trust the X-rays and his own medical expertise, the radiologist consults colleagues and calls Cameron’s doctor to find out if Cameron is ‘at risk’ before he finally discusses his findings with Cameron (19-20). In spite of his training and knowledge, in spite of the institutionalised space that supports him, in spite of the specified register that he can understand and apply,

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the radiologist does not primarily rely on his medical gaze but on naturalised stereotypes. The radiologist might also shy away from the diagnosis out of fear of consequences for himself. Diagnosing someone, especially a publicly known and influential man like Edwin Cameron, with the virus might be understood to be an intrusion into his/her private life and the doctor might be considered to have ‘denounced’ the public figure as ‘at risk’. After the onset of AIDS, Cameron starts an expensive antiretroviral therapy. At that time, the public health sector did not supply medication, but as a well-paid judge he has ‘choices’ and is given a ‘second chance’ (41) at life and health. Powerful as they are in fighting the viral load, antiretrovirals ‘unavoidably affect other body functions – upsetting the digestive system, causing painful nerve abreactions (tingling, numbness) and redistribution of body fat’ (17). Regardless of the long list of possible side effects, the positive results of taking the drugs are apparent when Cameron manages to climb to the top of Table Mountain after only four weeks of treatment. In contrast to less affluent people who cannot afford this expensive combination therapy, Edwin Cameron – like Adam Levin – belongs to the privileged South Africans who can pay for and benefit from this treatment (15). Edwin Cameron’s Roles: Private v. Professional While Cameron’s own medical history is a relevant part of the account, it is not necessarily the focus of attention because Witness to AIDS is structured by ideas circling around the epidemic in South Africa. Throughout the text, Cameron moves into and out of the private realm, pointing out how HIV/AIDS divides his life into his private life and his life as a judge. At times, these two parts are juxtaposed paradoxically. As a judge, he deals with HIV/AIDS in committees and by making public statements and recommendations; he also deals with it personally, in his own body. While he has always been outspoken about HIV/AIDS in his judicial function, he keeps quiet about his own health status. Especially after the onset of AIDS, it exhausts and unsettles him to maintain these two roles because the secrecy diverts much energy. He therefore comes to the conclusion that ‘sooner rather than later, [he] would have to unite the public and the personal’ (33). In spite of his legal right to remain silent, he decides to state openly that he is HIVpositive (62-5). After his public disclosure, which is met with mostly positive and supportive responses, there is no need any more to keep his personal (and bodily) involvement secret. In Witness to AIDS, Edwin Cameron offers an intimate view of his private life. Adding (family) photographs to the written text, he provides information on his life with HIV/AIDS as well as on his impoverished and broken family background, his upbringing at a children’s home in the Eastern Cape, the deadly accident of his twelve-year-old sister

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6.2 Edwin Cameron, Witness to AIDS, 2005. Cover of Tafelberg and I.B. Tauris Editions. (By permission of Tafelberg Publishers)

Laura, his successful education and professional career, his privileged position during apartheid because of his classification as ‘white’. Yet, compared to Adam Levin’s account, Witness to AIDS does not draw as much detailed attention to the individual. Even though the cover of the book features a large close-up of Edwin Cameron suggesting such exclusive focus (see Illustration 6.2), the text is less centred on him than AIDSAFARI is on Adam Levin. He positions himself in the background of his own life narrative. The conventional first-person pronoun that Cameron uses to relate his experiences features much less in this memoir, both in frequency and importance, than in AIDSAFARI. Throughout his life narrative, as Loren Anthony points out in a Sunday Times review, Edwin Cameron’s ‘clear authoritative voice cuts a path between the silence and panic of the Aids pandemic’ (Anthony 2005). Cameron achieves such an ‘authoritative voice’ through his dispassionate writing style, which can best be characterised in terms of the judicial system: he gives testimony to what is going on in and around him. As the title Witness to Aids

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suggests, Edwin Cameron feels ‘called as witness to AIDS’ (123). As witnesses usually do, he offers his memories, experience, knowledge and, here in particular, his body as evidence. In analogy to his position and work as a judge, Edwin Cameron goes beyond the personal and private. Trying to apply the court’s rules of honesty and objectivity, he considers varied arguments, facts, laws and court decisions in his life narrative. Edwin Cameron’s attempts at objectivity can be seen, for example, in the two chapters written jointly with Nathan Geffen of the Treatment Action Campaign. Cameron steps back from the conventional focus of an autobiography and its idea of exclusive authorship. Moreover, he not only considers himself but also relates the stories of others with whom he is linked by the somatic fact of living with the infection. Similar to Levin, Edwin Cameron – white, male, well-educated and relatively affluent – holds a privileged position in society. Unlike Adam Levin in AIDSAFARI, Edwin Cameron includes various references to different groups of people: children and adults, men and women, black, Coloured and white, poor and affluent people, people with and without publicity in South Africa, thus providing a complex picture of the epidemic. Cameron’s late gardener, whom he gives the pseudonym ‘Gladwell’, claims to suffer from tuberculosis and to have been tested HIV-negative, but Cameron suspects that his failing health is due to AIDS. Cameron broaches the subject of HIV/AIDS with him, offers him financial and medical help to give Gladwell a ‘chance’. However, fear of stigmatisation and ostracism is so powerful that Gladwell turns down his help, insisting that he is not infected. Instead he returns to Zimbabwe, where he dies soon afterwards (72-3). To illustrate and reflect on the cultural construction of HIV/AIDS and the social pressures associated with it, Cameron also relates the infamous case of Gugu Dlamini, who – unlike Gladwell – spoke out and was subsequently murdered by her neighbours. This reaction serves to counter-balance the positive and supportive responses to Cameron’s public disclosure. Moreover, Cameron sketches the stories of two well-known activists, Simon Nkoli and Zackie Achmat, to show their political involvement as well as private lives with HIV/AIDS. Both Nkoli and Achmat have been engaged in the struggles against apartheid and against the spread of HIV/AIDS. Simon Nkoli, an ANC-member and homosexual activist who died of AIDS-related diseases in 1998, regarded the equality of homosexuals as an integral part of the struggle for human rights and against the apartheid regime. With his activism and openness about being gay he has had his share in bringing the homosexual movement in South Africa forward and securing constitutional equality for all people, regardless of their sexual orientation. In keeping with this honesty and courage, Nkoli also spoke out about living with HIV/AIDS; as did his

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family and friends when they openly stated his cause of death in a media statement. He started an antiretroviral therapy but without success. As for the treatment failure, Edwin Cameron reasons that Nkoli’s virus had become resistant to the medication. Unlike the ‘drug-naïve’ (57) Cameron who benefits from a combination therapy, Nkoli had taken antiretroviral drugs successively as single medications. A different and tough stance on medication was adopted by Zackie Achmat: though increasingly suffering from opportunistic diseases himself, Achmat did not start with antiretrovirals until the government’s 2003 promise to make treatment available through the public health service. The availability of medical treatment is also considered in connection with the TAC member Christopher Moraka, a black, unemployed man from Nyanga, a township near Cape Town. Edwin Cameron uses his example to explain and criticise the impact of pharmaceutical patent laws. Like Cameron a few months earlier, Moraka suffers from oesophageal thrush, a painful fungal infection of the throat which makes it impossible to eat or drink properly and which can be fatal if not treated. Unlike Cameron, however, Moraka is unemployed, does not have medical insurance and cannot afford fluconazole, a successful treatment against thrush. In 2000, a few months before his death, Christopher Moraka addressed the Parliament health committee, pointing out how poor people are denied access to life-saving drugs (157-60). The excessively high prices are, as Cameron explains, a result of patent laws which allow pharmaceutical companies to hold the exclusive right to produce the drugs, and thereby secure large profits. The analysis of the working practices of the pharmaceutical industry is but one example of how Cameron circles out of the private realm of his own body and life and into the public sphere. Even in his criticism, Edwin Cameron is mindful of his position in the public eye of South African society. Although Levin is also publicly known, his role and publicity as a (fashion) journalist and author differs from Cameron’s as a judge. Statements, attitudes, or behaviour that might be acceptable for Adam Levin, Zackie Achmat and others, are not considered appropriate for a judge. Cameron is very conscious and mindful of the implications of his judicial office. He is of the opinion that ‘judicial office requires those assuming it to accept some limitation on how openly and fully they can participate in public debate on contentious current political issues’ (149). He argues that current political issues can reach the courtroom and play a part in legal cases. If judges have taken part in the public debate and have committed themselves to one view, it would be inappropriate for them to hear the case because they would not be able to act as impartially as is expected of them (149-50). However, his own health status and his understanding of human rights and justice have made Cameron speak out about HIV/ AIDS-related issues. His stance is of consequence to his role as a judge:

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so openly has he stated that he benefits from antiretroviral treatment, so strongly has he expressed his opinion that everybody has a right to life through treatment that he cannot and will not hear cases dealing with access to treatment (150-2). Concerning this particular matter, Edwin Cameron considers it justifiable to violate the principle of impartiality and to take sides in this current political debate. Cameron’s role as a judge also has an impact on his choice of language. He uses the judicial phrase of a ‘second chance’ to apply it metaphorically to living with HIV/AIDS. In the first chapter tellingly entitled ‘Second Chances’ (9), he relates court cases in which appeals against convictions and sentences are negotiated. Such cases include that of a young man charged with insurance fraud, a policeman taken to court for murder and attempted murder and a 1985-apartheid lawsuit in which the so-called ‘Sharpeville Six’ were accused of murder. Neither the accused nor the offences seem to be linked with the infection in the least. Still, Cameron establishes such a connection. Similar to the accused, whose appeals resulted in second chances, Edwin Cameron hopes for a positive prospect. ‘I, too, yearned for a second chance at life’ (28). Diagnosed with AIDS, he wants to give in to the syndrome as little as possible and to work as a judge in the newly democratic South Africa. Through his supportive behaviour towards his late gardener and through his stance in the political controversy about the treatment of HIV/AIDS he openly shows that he would like all South Africans in need of antiretrovirals to be given a second chance. With his public disclosure, Edwin Cameron hopes to encourage other well-known Africans to follow his example. ‘When I made my statement, I was confident that within a very short time other African leaders would follow – cabinet ministers, entertainers, sports stars, Members of Parliament. This has not happened’ (65). Confronting this culture of silence, Cameron’s Witness to Aids contributes to the destigmatisation and rational discussion of the virus. Visual Life Narratives – The Bambanani Women’s Representations of HIV/AIDS Not only can literary life narratives recount people’s experiences with the virus. In South Africa and elsewhere, art projects have also been used in a similar way. Memory books and boxes, for example, are created to depict people’s memories, stories and lives with HIV/ AIDS. Making use of verbal and visual forms of communication, their aesthetic features and forms differ from the literary texts discussed previously. In spite – and because – of these differences, the memory works are noteworthy as they also contribute to the representations of HIV/AIDS. The colourful art book Long Life: Positive HIV Stories (2003) is an outcome of a community-based project in Khayelitsha, a large township near Cape Town. Published by Jonathan Morgan, then

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a clinical psychologist at the University of Cape Town (UCT), and the Bambanani support group of HIV-positive women, the carefully designed book relates the women’s life narratives through drawings, painting, photography and writings. Given the financial and staff constraints on the South African health care system in general and on township clinics in particular, the connection with the university has been crucial to the whole project. It has provided the women with the necessary resources and opportunities to produce body maps and to make their life stories public. In 2001, the Memory Box Project was set up at the University of Cape Town as part of the AIDS and Society Research Unit. Directed by Jonathan Morgan, researchers organised workshops in which support groups of HIV-positive people could participate in the Memory Box Project. The concept has its roots in Uganda in the late 1990s (Almeleh 2004, 7-8; Vasquez 2004, 5; Wienand 2006, 3-4; Witter & Were 2004). Conceived prior to a rollout of antiretroviral treatment in southern Africa, memory boxes were initially thought of as a therapeutic tool to enable HIV-positive people to deal with the psychological and practical issues surrounding death. To record their lives and family histories, HIV-positive men and women collected photographs, documents and stories about their lives in boxes, thereby preparing legacies for their family members, especially for their children who were left with an intimate reminder of their parents and with detailed knowledge of their own identity. In this context visual material is of special significance. Regardless of their age and education, children are able to understand the stories because they are presented in a ‘language’ that the children can ‘read’ and relate to. As for the creation and intention of memory books and boxes, the advent of antiretrovirals has been influential. Although the rollout of medication in South Africa (and other countries in Africa) is still affected by various problems and not everybody in need receives treatment, the drugs have become available through the public health care system so that living with the virus has become possible; the infection needs no longer be a death sentence. In response to the changes, the UCT Memory Box Project aims at signifying hope and life. Subscribing to this optimistic and future-oriented view, the book, published as one of the results of the project, is tellingly entitled Long Life: Positive HIV Stories. The book records the work of the Bambanani support group for women living with HIV/AIDS. In body-mapping workshops, the twelve group members Babalwa, Bongiwe, Bulelwa, Maria, Ncedeka, Noloyiso, Nomawethu, Nomonde, Nondumiso, Ntombizodwa, Thozama and Victoria painted life-size pictures of their bodies (see Illustration 6.3). In this creative and visual exercise, they traced their body outlines and learned to see how their memories and experiences (with HIV/AIDS) are inscribed onto their bodies. Not subjected to a doctor’s powerful

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6.3 Body Maps of the Bambanani Women. Jonathan Morgan & the Bambanani Women, Long Life. Positive HIV Stories, 2003. Memory Box Project of the AIDS and Society Research Unit, Centre of Social Science Research, University of Cape Town. (By permission of the Centre of Social Science Research and the Bambanani Women)

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medical gaze that ties them down to an inferior position, the women can reclaim agency over their own bodies. In a final step, the women presented their body maps to the group; the paintings were used to facilitate further discussion and to enable the women to voice their narratives (Almeleh 2004, 10). Even though the memory book is not solely aimed at young children, visual communication is still highly significant in this context. It avoids privileging any of South Africa’s eleven official languages and it can prove very productive when discussing HIV/AIDS as it does not rely on a specialised medical register. The Individuals The book is a collection of individual life narratives. Each chapter of the book deals with one member of the support group. Starting with a fullpage copy in colour of the woman’s body map, the chapters provide her (first) name and life story, photos of her everyday township life as well as drawings and samples of handwriting. The only exception is the first ‘chapter’, which deals, or rather was meant to deal with Thobani, the only man in the group who soon dropped out. In his case, the one-page ‘chapter’ features an unfilled-in tracing of his body, the very first step towards a body map. Nevertheless, his empty body outline is included in the book in order to mark that a ‘man’s story and a man’s perspective would have been welcome’, as Jonathan Morgan points out (Morgan & the Bambanani Women 2003, 14). The remaining twelve chapters deal with the twelve African women from Khayelitsha who make up the support group. Although the chapters are structured similarly and include comparable information, the life narratives differ significantly from each other both in writing and painting and are thus presented as individual. Contrary to their often muted and suppressed position in society, the women are here empowered because they are in charge of their own stories. With the body map as a starting point they can lay claim to their own bodies and lives. One major aspect in which the accounts differ is the question of disclosure. Some of the women feel confident in disclosing their health status outside of the support group to their partners, children, relatives, to their friends and in their neighbourhoods, while others have not done so in fear of discrimination and isolation. Four women feel comfortable stating their full names in the book, whereas the others give only their first names. One woman presents herself as ‘Victoria’, an English pseudonym, because she does not want to make her Xhosa name public. Nevertheless, all women give detailed and personal information on their lives, their dates and places of birth, on their upbringing and their families. Four of the women who do not state their family names still include a photo of themselves in the book. Even if the self-portrait is slightly unfocussed, as in Noloyiso’s case, it can still help to identify the women. The discrepancy between the women’s outspokenness

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about their HIV status in this book and their unwillingness to disclose their infection as openly otherwise is due to the fact that the women interpret ‘disclosure’ differently. Some women disclose ‘fully’, others ‘partially’ by speaking out about HIV/AIDS in communities and townships outside of Khayelitsha but by remaining silent about their status in their households, families and neighbourhoods (Almeleh 2004, 17-18). ‘Victoria’, for example, who prefers to use an alias and who told only her brother about her infection, facilitates memory box workshops in Zimbabwe. She can thus avoid stigmatisation in her everyday life but still contribute to AIDS education and activism. ‘Victoria’ and the other women negotiate their openness in public depending on what audience they address. Moreover, the women’s disclosure in this book can be read as an indicator of the reading audience. The women might feel safe to speak out because they consider it unlikely that the people of their local communities in Khayelitsha will have access to such an expensive art book. As these differences in the presentation of names and photographs show, it is up to the women themselves to decide what they want to make public about their private lives. That is why the chapters about the twelve women can be characterised as a collection of individual stories rather than a homogeneous text. The Collective Not only do the women present themselves as individuals; they also see themselves as a support group and as representatives of a social group. The collective quality is expressed in the similarity of the body maps, resulting mainly from the clear instructions that the women were given by the workshop facilitators when creating their paintings. The shared identity and mutual support of this collective also become visible in the name the women chose for their group, ‘Bambanani’, which translates from isiXhosa as ‘to support each other, to lend hands’ (Morgan & the Bambanani Women 2003, 5). This collective identity is, in turn, visualised in the body maps. When tracing the outlines of their bodies for the body maps, the women work in pairs. On one piece of cardboard the partners draw around each other’s body so that the two outlines overlap each other, with one looking like a shadow. In a society where silence and stigma have dominated the epidemic, this shadow can function metaphorically. The women come to realise that they are not the only ones infected and that they do not have to cope with the virus by themselves. As the Bambanani group, the women speak with a collective voice – literally using the pronoun ‘we’ – and with a clear activist agenda, as becomes evident in the women’s introduction to the book. ‘We Bambanani women are making this book because we want to teach people living with HIV how to live with HIV. […] We want to tell the whole world that we are many and we are working’ (ibid.). As

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this quote exemplifies, the Long Life book adheres to genre conventions different from Cameron’s and Levin’s literary narratives because it can be classified as an expository text that explicitly spells out its political and educational agenda. The Bambanani women provide the audience with a less privileged perspective. Besides living with HIV/AIDS, the women’s lives also share other features such as poverty, unemployment, domestic violence and inequality – circumstances which differ significantly from Levin’s and Cameron’s. Even though the memory box project is primarily concerned with the epidemic, it also addresses the social context of township life which strongly shapes the women’s identities and lives (with HIV/AIDS). Nonetheless, the women are in a position similar to that of the two privileged white men as far as their roles as patients are concerned. Like Levin and Cameron, they are also subjected to the medical gaze of trained doctors. Dealing with differences in education and knowledge in a productive way, the women find ways of overcoming their supposedly inferior roles. By using alternative forms of languages, they develop their own ways to explain and communicate their experiences. Drawing, painting and writing about their experiences as well as sharing them in the ‘safe’ environment of the memory box project and the support group, helps the women to reflect on their situations and to (re)appropriate their bodies and identities. Furthermore, the women employ a language which cuts across entrenched boundaries of western and traditional medicines. Trying to understand their ailments and treatment, they make their own interpretations. Nondumiso, for example, uses the term ‘muti’ (Morgan & the Bambanani Women 2003, 39), the isiZulu word for medicines, to describe how her tuberculosis was treated at the hospital. Making sense of the unknown and possibly confusing situation by drawing on concepts which are familiar to her (and to the other women), she can overcome the insecurity and alienation patients often experience in their hierarchical interaction with medical practitioners. Providing further (medical) information, comments of health care workers and researchers are woven into the women’s life narratives. One such comment shows that the doctors at the governmental clinic in Khayelitsha, which is run by the international organisation Médecins Sans Frontières and has provided antiretrovirals since 2000 in a pilot programme, support the active involvement of their patients, especially in questions of treatment and adherence. Speaking for his colleagues and himself, Dr Herman Reuter comments that we have put our patients in charge of their own health. Most clinics do not expect patients to participate in any decisions taken at the clinic. To successfully treat people living with HIV, we have to provide them with enough information that they can make their own decisions about their health. Our success was symbolised by the patient knowing his own

186 Breaking the Silence folder number off by heart. (Reuter in Morgan & the Bambanani Women 2003, 50)

Not only do the women try to take an active and self-determining role as patients; they are also supported by their doctors who do not play out their powerful and supposedly superior position but take an interest in their patients’ understanding and active decision-making. In conjunction with the empowering and expository quality of the project, the body maps are also artworks. ‘Outside the walls of formal art exhibitions [...], many organisations and community initiatives implement art in their activist strategies’ (Allen 2009, 411). The Bambanani project is one of them, aiming at a creative process through which the black women – who are at the historically less powerful and often marginalised outskirts of South African society – are enabled to express themselves.4 Still, the body maps have wider repercussions than the original production context of the support group suggests. After all, the women not only ‘document’ the impact HIV/AIDS has had on their lives but construct their body maps by means of selection and arrangement. This artistic dimension becomes all the more prominent through the publication of Long Life in an art book style and through exhibitions showing the original life-size body maps. The body maps are thus not only immediately relevant for the support group but, like AIDSAFARI and Witness to AIDS, they also contribute through ‘life writing’ to the cultural construction of the South African epidemic.

Teenage Fiction Given that HIV/AIDS has long been a taboo topic, it is all the more surprising to find that a comparatively large number of books addressing the infection have been published for young readers, even dating back to the early 1990s. The genre of teenage fiction is particularly prone to the production and circulation of meanings about HIV/AIDS because the texts are often used as instruments in AIDS education. Not only are teenagers made aware of the virus through fictional stories, and not only do they encounter ‘facts’ about its contraction, medical treatment or prevalence; the texts also shape the public perception of HIV/AIDS among teenagers. Many researchers address children’s and teenage literature con4

The Keiskamma Art Project in the Eastern Cape, consisting of more than 100 artists, is another prominent example. The Keiskamma Altarpiece, a complex artwork made of beadwork, appliqué, embroidery and photography, is one of its major works (Keiskamma; Allen 2009, 412). In 2006 MAKE ART/STOP AIDS, an international HIV/AIDS network of scholars, artists and activists, brought the altarpiece to the International AIDS Conference in Toronto as well as to other places in North America (MAKE ART/STOP AIDS).

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comitantly, making apparent that it is demarcated by age and thus distinguished from adult literature. The selection of a teenage fiction corpus is thus mostly defined by the recipients, rather than by textual characteristics (Ewers 2000, 15-23; Gansel 2003, 8-9). One defining feature of teenage fiction is its didactic function, according to which texts shall be ‘useful’ and serve to instruct young adults. Teenagers are meant to read about and thus be introduced to various fields of knowledge (Ewers 2000, 178). Depending on contemporary circumstances, these can include, among others, technical, medical, historical, political, geographical and religious issues. Simultaneously, teenagers shall be confronted with and explore norms and values through the literary texts (ibid., 179). Social conventions, morals, gender roles and examples of socially (un)acceptable behaviour can be represented in order to advise and guide teenagers. Teenage fiction thus functions as an instrument of socialisation and education for young readers. Moreover, it aims at aesthetic education (ibid., 180). Teenagers shall become aware of artistic literary features, thus developing reading competences and an understanding of the concept of ‘literariness’. This final aspect underscores the complexities of the issue: while educational purposes of teenage fiction are one decisive element, teenage fiction also classifies as literature and as such it is defined by poetic characteristics. However, Ewers cautions that these different dimensions should not be understood as crude dichotomies. ‘Aesthetics or didactic concerns, pedagogy or art, autonomy or utility – these appear to me to be alternatives that are less and less adequate to grasp the most recent developments of children’s and youth literature’ (Ewers 2006, 280). In addition to the didactic and aesthetic dimensions, accommodation is a central category for the analysis of teenage fiction, concerned with the question whether the texts are appropriate for the teenagers’ social, linguistic and cognitive competences, for their ability to decode literary texts as well as for their tastes, interests and situation in life.5 Nonetheless, the concept of accommodation is not to obscure the fact that teenage fiction has two addressees: teenagers and adults. Even in the case of texts which are written specifically for and adjusted to teenagers, literary communication is enabled by adults such as book sellers, teachers, librarians and parents because they select, purchase and/or recommend books. Although the decision-making process of adults has greater impact in the context of children’s literature, adults still have their share – more or less directly – in the literary 5

To explain that a literary text is ‘adapted’ to a particular reading audience, critics have used the term ‘adaptation’. However, as Ewers correctly points out, this term is not particularly helpful as it is an already established term in literary studies, but with a different meaning (i.e. the transferral of a work into another medium, for example, the re-casting of novels as films). To overcome this ambiguity, Ewers suggests using the term ‘accommodation’ instead to describe that the perspective of a particular reading audience is inscribed into the text (Ewers 2000, 205).

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communication of teenage fiction. They function as mediators or, to use Ewers’s term, as ‘gate-keepers’ (Ewers 2000, 102) who ‘guard’ teenagers and their reading. Compared to texts from earlier centuries in which both groups of recipients were addressed openly, teenagers are now usually the only explicit and official addressees of youth literature (ibid., 104-5). However, the powerful position of adults has not been abolished; it has only become less obvious because adults have come to be unofficial and implicit addressees (ibid.). Teenagers are not meant to be aware of this double address but to think of themselves as the only recipients, as independent readers and decision-makers. Therefore adults function as the implied readers of the literary text. It is mainly outside of the literary text itself – in the paratext (Genette 1997) – that the double address and communication can be achieved. While an attractive and well-designed cover, for example, can be aimed at teenagers to raise their attention, other information on the book jacket can serve as a guideline for adults, such as indicators of an award-winning author or book, positive reviews by known literary critics or publishers’ recommendations concerning the target age group. Teenage Fiction in (South) Africa Compared to its counterparts in Europe and the United States, the body of (South) African creative writing for children and teenagers is still slim but growing. Philomena Osazee Fayose concludes her overview article on African children’s literature on the optimistic note that ‘children’s literature in Africa is growing steadily. The output has increased and the variety and forms have become diversified’ (Fayose 2004, 935). The same is true of research in this field. Although it has been a ‘sadly neglected area of critical enquiry’ (Khorana 1998, 136) and ‘researchers dealing with African children’s literature have been almost non-existent’ (Fayose 1991, 73) both in Africa and in other parts of the world, over the past few decades, scholars have begun to show an increased interest in African fiction for young readers, evident in a growing number of contributions in books, journals and periodicals (ibid.; Osa 2001, 166). Within Africa, South Africa is known for its very good publishing infrastructure; it has become Africa’s ‘most prolific publisher of books for children’ (Heale 2004, 950). South Africa’s leading position on the African market for books for young readers becomes visible, for example, in the context of the Noma Award for Publishing in Africa, a prestigious African book prize. South African entries have, however, been considered ‘problematical in terms of the Noma Award’ (Schmidt 1998, 42) as its publishing industry is so well developed that it is not in as great a need of promotion as other African countries. South Africa’s submissions of books for young readers represent up to 30% of the total

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submissions (ibid., 29, 42). This ‘flood’ of entries (ibid., 42), as it is metaphorically referred to, illustrates the country’s leading position on the African market. The observation ignores, however, that books and reading (for pleasure) are still a privilege in South Africa.6 Although teenage and adult fiction is usually less expensive in production than full-colour (picture) books for children, the retail prices are high and the availability of books, especially outside of urban centres, is low. The multiplicity of languages in South Africa aggravates the situation. For these reasons, children and teenagers will encounter books mostly through and in schools. In these circumstances, many publishers focus on the production of school texts because this field is profitable and guarantees sufficient and constant sales. Thus, the conception ‘books = school’ (Heale 2004, 947) still prevails in South Africa, as it has done in other parts of the continent.7 In North American and European criticism on teenage fiction, researchers mainly focus on voluntary reading; set texts used as mandatory reading in schools are usually not taken into account (Ewers 2000, 16). However, this distinction between school and leisure reading is less appropriate and productive in the (South) African context. The focus on publishing texts that can be used for classroom discussion is also visible in South African teenage fiction on HIV/AIDS because schools are an undeniably central institution in the process of making teenagers aware of and teaching them about HIV/AIDS. In 2005, the Department of Education and Health introduced the learning area ‘Life Skills’ as an obligatory subject in all schools (von Maltzan 2006, 195).8 Students are to be prepared for ‘life’ by learning about health 6

7

8

To make books available for all South Africans, the Centre for the Book, a unit of the National Library of South Africa in Cape Town, encourages reading, writing and publishing books in all local languages. Following this directive, book launches, conferences, writing groups and workshops are organised. Also aiming at the promotion of reading, organisations like Biblionef South Africa donate new books in the eleven official languages to schools, crèches, children’s homes and other institutions mainly frequented by children and youth, especially in rural areas and townships. Biblionef also provides institutions with a lockable and easy-to-carry steel trunk if there is no space otherwise to store the books properly and safely. In under-privileged areas where books and library resources are scarce Biblionef has also helped to set up informal libraries in converted second-hand sea containers. While Eurocentric influences have long been predominant in the books read in schools (Fayose 2004, 928), a need for local material has been recognised by teachers and authorities, by authors and publishers so that more and more (South) African texts have been introduced into (South) African schools (Flockemann 1998, 145). The number and variety of books have increased that ‘draw from the African worldview and are written in a language and style which the children can understand and appreciate’ (Fayose 2004, 927). The supplementary readers for schools in the Heinemann Junior African Writers Series (JAWS) are but one example of this development. The series is produced by an international publishing house, but relies on African authors and illustrators and, on the textual level, displays African protagonists, themes and settings. Looking at the National Curriculum, it becomes obvious that life skills are considered an important learning area. In addition to literacy (40%) and numeracy (35%), life skills make up 25% of the time and emphasis in the foundation phase. In the intermediate phase, the time allocation for life orientation is reduced to 8% but still has a considerable impact because it receives as much attention as, for example, technology (8%) or arts and culture (8%), compared to languages (25%), mathematics (18%) and natural sciences (13%) (Department of Education 2005).

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issues, about their personal and physical development, about society and in the higher grades about possibilities for their professional future (Department of Education 2005). Thus, a market has been created for fictional and non-fictional texts and workbooks to cater to the needs and interests of students, teachers and life-skills facilitators. Recognising the lucrative opportunity, large publishing houses well-known for their children’s and youth literature such as Maskew Miller Longman or Tafelberg (Heale 2004, 950) produce material in great numbers and high quality. The texts are printed on good-quality paper; most feature well-designed, colourful covers and some include black-and-white illustrations to accompany the written text. Fictional texts can be used not only in literature classes but also in life skills lessons, albeit with different educational goals. While teachers and students would work on fiction as aesthetic products in literature classes, in life skills the contextualisation of the representations would be of greater concern. Like the bulk of stories published for young readers throughout Africa, many of the texts on HIV/AIDS are written in a realist mode. A possible explanation of this tendency might be that realist stories ‘give an honest and sympathetic treatment to current social, economic and political issues in society in order to help children [and teenagers] come to terms with them’ (Fayose 2004, 932). While Fayose interprets the writing style as a successful accommodation of the teenage target audience, it should not be mistaken to imply that the texts function as a ‘mirror’ of ‘social reality’. As creative texts, they produce (ambiguous) meanings. UNICEF, Sara – The Empty Compound Featuring the eponymous African adolescent character, the Sara series addresses youth issues such as education, peer-pressure, sexuality or HIV/AIDS that affect teenagers in Africa. Developed and used by UNICEF since 1994 and published in cooperation with Maskew Miller Longman, the wide range of materials includes comics, readers, activity books and wall charts. Available in English, French, Portuguese and Kiswahili, they have been put to use in many African countries, especially in southern and eastern Africa. To meet the specific requirements of the South African school curriculum, Sara: A Life Orientation and HIV and AIDS Education Course has been created for life skills lessons and consists of a workbook and a teacher’s guide for each grade. Analysing the representations of HIV/AIDS, one particular Sara story, Sara – The Empty Compound (UNICEF 2000) is of interest.9 Told in pictures and speech bubbles, the comic book tells the story of how Sara’s cousin dies and his pregnant wife Sofia and their child come to 9

In addition to its original format of a comic book, the story is now also available as a written text to appeal to adolescents who do not particularly enjoy picture stories.

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6.4 UNICEF, Sara – The Empty Compound, 2000. Cover of the Comic Book.

6.5 UNICEF, Sara – The Empty Compound, 2000. Opening Page of the Comic Book.

(By permission of UNICEF South Africa)

(By permission of UNICEF South Africa)

live with Sara and her parents. Because of rumours that AIDS-related diseases were the cause of death and that Sofia might be infected as well, Sofia is stigmatised and excluded from the community. These reactions also have an impact on Sara who sympathises with Sofia. In the end, Sofia decides to take a test in order to find out about her health status; and, especially with the help of Sara’s parents and the school teacher, the community learns to speak out about and face HIV/AIDS. Neither the comic book’s title nor the cover indicates that the virus is the story’s main theme (see Illustration 6.4). Painted in bright colours and taking up the whole page, the cover depicts a family scene. Standing in front of a traditional round hut with beautiful hedges, trees and flowers surrounding it, the pregnant Sofia and her in-laws welcome Sara and her parents who have come to visit. HIV/AIDS is thus not only represented in terms of stigmatisation or exclusion but also in terms of inclusion and community. However, the cheerful atmosphere of the cover is harshly contrasted with the first image of

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the story depicting the funeral of Sofia’s husband (see Illustration 6.5). Again covering the whole page, the image shows how young men carry the coffin, followed by a large group of mourners. Shown from a high angle, the image establishes the scene because the viewers can see much of the surrounding, the landscape, the huts, the fields and paths. Sara’s uncle bemoans the death of his son who, according to him, died ‘so young’ of ‘cancer’ (1). In the comic format the different perspectives are not prioritised or evaluated. Still, the claim that cancer was the cause of death is contested by other characters directly after the funeral. One woman believes AIDS to be the cause of death; another woman claims a curse to be responsible for his death (2-3). Thus, various views are presented in direct speech and stand next to each other in equally uncommented speech bubbles. Although there is no narrator to guide the recipients by judging the comments and the situation, it becomes clear in the course of the text that HIV/AIDS is a central issue. Attributing the death of Sofia’s husband to cancer is most probably an attempt to keep silent about the virus. Sofia is blamed for her husband’s death; she is stigmatised and ostracised, both by her in-laws and the larger village community. This reaction can be read as a sign of the people’s suspicion that, regardless of the officially stated cause of death, the husband died of AIDS-related diseases. Their behaviour is informed by the presupposition that, since HIV/AIDS is a sexually transmitted disease, Sofia might be HIVpositive herself. Sympathising with her but unable to expose people’s judgement on Sofia and her late husband as social constructions, Sara turns for an explanation to her parents who point out to her that silence and stigma surround HIV/AIDS, resulting in such an exclusion from social life. Since the events are mainly perceived through Sara’s eyes, the readers also receive guidance when she is given this explanation. At some point, Sara herself is ostracised for being close to Sofia, which makes apparent that the fictional public does not treat the infection as an exclusively medical issue. Imbued with projections and fears, HIV/ AIDS goes beyond a somatic condition. Faced with the gossip, Sara’s teacher comes to her rescue and states, We don’t know if Sofia has HIV/AIDS. And even if she does, she needs our support, not our hatred. […] Even if she is HIV positive, do you think she is the only one in the village? […] Unless we face up to this disease and tell the truth, it will finish us all off. (26-7)

Using the phrase ‘even if’, she stresses that the students do not know whether Sofia is infected and that their position is pure speculation: thus she makes the students aware of their presuppositions. Indirectly, she also evaluates Sara’s behaviour positively. Supported by some of her peers and by influential figures such as her parents and teacher, Sara is represented as a good role-model.

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The comic has an optimistic ending. In the final images, Sara’s fellow students are shown helping Sofia cultivate her compound, suggesting that they have reconsidered their behaviour and have begun to follow Sara’s example. Sofia has taken an AIDS test but does not yet know its results. This open-endedness of the comic book implies that the results do not have further consequences because, regardless of the outcome, Sofia is treated and accepted as a full member of the community. The ending suggests that HIV/AIDS has come to be regarded as a mere medical issue. In fact, the cover of the book suggests such a positive outlook. Sofia’s husband is not represented in the picture, while all other family members are visible. Decoding the cover – again – after having read the comic, one can assume that this family scene takes place after the death and funeral of Sofia’s husband. Sofia is not stigmatised or excluded from the community, as is suggested by the way she is depicted close to her mother-in-law in the family scene. Thus, the image contrasts the message of the title Sara – The Empty Compound: the compound is no longer empty but functions as a meeting place. Although the comic book relies heavily on images rather than written text, it cannot be mistaken for a children’s picture book. To be able to decode the images and to make sense of the plotline, the recipients must have certain cognitive competences that cannot yet be expected from children. Moreover, the protagonist of the story is Sara, introduced and characterised as an adolescent girl by the setting, the character constellations and her outer appearance. Sara – The Empty Compound is accommodated to teenagers in Africa, but not specifically to South African youth. Both in the pictures and the text, the setting is characterised as rural Africa through the depiction of the traditional round huts and the characters’ clothing, through migrant labour and everyday tasks like fetching water from the well. Yet, the setting is not specified any further as the text is written completely in English, without any references to African languages, to cultures, religions, towns or cities. The comic book thus allows for a broad marketing strategy: it can be distributed in various African countries without making any changes necessary to adapt the story to the local specificities. Despite this accommodation to youth, some of the paratextual elements address both teenagers and adults. The comic book features a user’s guide on the final pages of the book, which includes a one-page non-fictional text on HIV/AIDS, including statistics and suggestions of how to face the epidemic, thereby augmenting and contextualising the creative representation of HIV/AIDS in the comic. The guide also enumerates the objectives of the story and provides content-related questions. Some questions are targeted at all recipients; some questions are geared to certain sub-groups, to girls, boys, parents or community members. Various possible follow-up activities are outlined as well.

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With these paratextual elements, the pedagogical function of the booklet is stressed. Adults are included as the unofficial addressees of the comic because they can facilitate the discussion of HIV/AIDS in their roles as parents, teachers or older community members. Gavin and Val Kruger, A Story of Hope! For Teens and Adolescents While Sara – The Empty Compound serves to make its readers aware of the characters’ motives and to critically engage with their own presuppositions, the novel A Story of Hope! (Kruger 2006) does not invite such reflection. Organised in a dogmatic pattern of binary oppositions, ‘good v. bad’, ‘moral v. immoral’, ‘innocent v. guilty’, the novel singles out one ‘correct’ way of behaviour: sexual abstinence. Readers are not presented with strategies of how to live productively with HIV/ AIDS, they are advised on how to avoid the contraction of the virus in the first place. The book is published by the non-profit organisation ‘Focus on the Family Africa’. While the organisation is not affiliated politically or denominationally, it follows general Christian ethics: its prime directive is ‘to be sensitive to the needs of families and, most importantly, meet those needs with strong, biblically based advice and resources’ (Focus on the Family Africa). Its main outreach is through radio broadcasts, newsletters, books and pilot projects launched in schools, churches and youth clubs. The literary potential of (teenage) fiction is of little relevance to A Story of Hope! because the organisation uses it primarily as an expository text to spread its moral agenda. In the novel, the twelve-year-old protagonist Hope is confronted with HIV/AIDS in various ways. Her younger sister Joy dies of AIDSrelated diseases after she contracts the virus by playing with a needle that her brothers and their friends used to inject drugs. Diagnosed as HIV-positive, their older brother Manny learns that condoms are not 100% safe; he starts taking antiretrovirals. One of the brothers’ friends, Bill, who takes drugs and was sexually abused by one of his mother’s boyfriends, is attracted to Hope. When he is diagnosed with AIDS and dies shortly afterwards, Hope realises that she could have contracted the virus if she had given in to Bill’s sexual advances. Hope, however, decides to adhere to the instructions that she is to abstain from sex before marriage. In the end, she is happily married with three children and finally dies an old woman. Although the story time of A Story of Hope! covers several decades, the main focus – both in emphasis and length – lies on Hope’s teenage life; only the final chapter provides the readers with highlights of her adult life: her graduation as a nurse, her marriage, her role as a mother, later as a grandmother and finally, her peaceful death. This extension of the story time serves to show that the story of Hope follows the principle of poetic justice. As she learned to abstain from sex before marriage, Hope is represented as ‘good’ and ‘virtuous’ and is therefore ‘rewarded’

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with a long and happy life. Her very name already suggests that there is ‘hope’ for her and that her story ends positively. With its plot and character design, and with its focus on social norms and values, the novel shows generic affinities with conduct books that became popular in the eighteenth century. Throughout the novel, strong ethical views on HIV/AIDS are propagated, based on the principles that also shape the organisation behind this publication, Focus on the Family Africa. By reading the text teenagers are warned about HIV/AIDS. Whereas AIDS education programmes often run under the so-called ‘ABC slogan’ – abstain, be faithful, ‘condomise’ – this novel is geared towards a single aspect: abstinence is presented as the only reliable and trustworthy option. The narrative situation is an important textual strategy used to underscore this message. The story is told by a didactic narrator who explicitly evaluates the views and actions of the characters. In so doing, he makes frequent use of foreshadowing, of exclamations and accusations. ‘What a pity Hope did not have a mother to guide her and show her how to avoid the dangers that were soon to come her way!’ (14) In this statement, for example, the narrator expresses his concern for Hope and indirectly reproaches her mother for not teaching her about sex and sexually transmitted diseases. Moreover, he holds Hope’s brothers responsible for the death of Joy by condemning their behaviour. ‘How terrible to think that the two big brothers, who should have helped to protect their young sister, had actually indirectly caused her death through their reckless high risk, destructive behaviour’ (45). The responsibility and blame that the narrator places on them is emphasised by references to her as their ‘little sister’ (9, 11, 34, 38, 52), as ‘little Joy’ (20, 22, 33), ‘little innocent Joy’ (33), ‘little precious Joy’ (33), ‘poor little Joy’ (33). With her attributed name and such phrases, Joy is characterised as a ‘virtuous’ young girl ‘in need of protection’. She is displayed as a ‘victim’, both of the syndrome and of her brothers’ behaviour. This characterisation serves to emphasise that teenagers like Joy’s elder brothers are not only responsible for themselves and their own lives, but that their actions have significant consequences for others as well. Read in terms of gender roles, the constellation also implies that men should take care of women, who are thereby relegated to a passive position. Within the story, two characters in particular function to support the narrator’s comments and judgements: Blessing, a man who gives a talk about HIV/AIDS at Hope’s school, and Granny, an old woman in the neighbourhood. Although she is not the grandmother of Hope or other children in the street, she is called Granny, which suggests the importance of the (extended) family. This name characterises her as an old and benevolent woman to whom the children feel close. Granny

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is presented as trustworthy and experienced so that she functions particularly well as a mouthpiece for the novel’s moral message. When Granny tells Hope about puberty, about the changes in her body and feelings, about love and sex, Hope does not question her comments but accepts them as ‘given’. Stressing the difference between ‘true love’ and ‘empty lust’ (18), the choice of words already indicates that Granny’s opinion contributes to the novel’s moralising education. At school, Blessing instructs the students along similar lines. Drawing on his own experiences and mistakes, he warns them about sexual intercourse before marriage. Similar to Hope and Joy, it is his very name that indicates that he has been ‘blessed’ because he sees and regrets the mistakes he has made in life, especially ‘his bad decision to have sex before marriage’ (29). At the same time, his name indicates that he can be a ‘blessing’ to others, especially to teenagers, because he can teach them ‘to avoid the mistakes he made when he was young’ (52). This characterisation of a man who has learned from his mistakes also supports the novel’s generic affinity with conduct books. Both Granny and Blessing function as educative voices whose comments on abstinence are represented as different from – and evaluated as better than – regular sex education at school. When Blessing gives his ‘wonderful talk’ (29) at school, he and his speech are described in much detail and very positively. The instructors of the sex education talks, however, are neither given names nor are they characterised in any other way; they are simply referred to as ‘some people’ (21). Contradicting Granny’s and Blessing’s advice, ‘these people taught them how to have sex, even at her [Hope’s] age, as long as they used a condom’ (21). Although criticising established school curricula, the novel is not used to challenge the construction of meaning, knowledge and authority; the criticism is merely an attempt to replace dominant sex education messages with the lesson on abstinence promoted by the organisation Focus on the Family. In the course of the novel, the socially and politically approved AIDS education instructions are presented as problematic. Although Manny has always used condoms, he has contracted the virus through sexual transmission because, as a doctor explains to him, condoms are never absolutely safe. Abstinence is held even higher when Manny admits that ‘even though he had used condoms to protect himself physically from sexually transmitted diseases (or, so he had hoped), he always felt so bad after having sex with the many girls he had slept with’ (40). Not only marked as medically relevant advice, abstinence is also presented as emotionally ‘rewarding’. Earlier in the text, the narrator hints at this outcome and warns the readers that Manny is not a good role-model: If only someone had told Manny that there was no reliable study in the world that proved that the condom was one hundred percent protective

Literary Genres 197 against sexually transmitted diseases. In fact, most studies implied that this was not nearly the case. In a country where AIDS was rampant, any failure rate in the use of condoms was too dangerous a chance to take. Manny was about to find out. (23)

Described as ‘rampant’, the South African HIV/AIDS epidemic is constructed as an immense, uncontrollable threat to all sexually active people. Through Manny’s example, the use of condoms is represented as unsafe and the message of the safe-sex instructors is discarded as untrustworthy. ‘Poor Manny was so angry with the people who said this was “safe sex” because he had, in fact, been misled’ (40). This notion implies that he is not to blame since responsibility lies with the instructors who promote what is considered ‘incorrect’ information. The novel can therefore be read as a critical engagement with South African school curricula on sex education, taking issue with the dominant knowledge perpetuated in the educational system and challenging it as ‘unreliable’, ‘misleading’, even ‘dangerous’ and ‘lifethreatening’. This criticism corresponds to the fact that Focus on the Family Africa runs its own projects at schools: the No Apologies: The Truth about Life, Love and Sex programme. The project’s subtitle spells out the organisation’s assumption that its signification of the epidemic is ‘the truth’, implying that there is just one ‘right’ strategy of coping with the situation and that all other instructions are ‘untrue’. In addition to the literary text, information on this No Apologies programme is included in the book, as are references to the organisation’s other publications. Moreover, the book offers ‘Points for Discussion’ (54-5), including content-related questions so that teenagers can check their understanding of the text and of HIV/AIDS as, for example, ‘The causes of AIDS’, or ‘What caused Bill to rob the grocery store?’ (55) Even though some topics are framed as questions, not all of them allow for an open discussion with different answers and opinions. Instead, they are highly suggestive, indirectly pushing the readers towards the one preferred reading of the novel, as in the case of ‘Can we still live a good life even if we have made mistakes?’ and ‘Do condoms protect our emotions?’ (55) Most topics openly and strongly refer to Christian morality, as in the cases of ‘The value of marriage and family’, ‘The value of Church to the family’ and ‘The value of keeping sex for marriage’ (545). The book does not outline what exactly these ‘values’ are meant to comprise, suggesting that they do not need an explanation because they are ‘given’ and ‘universal’. None of the points for discussion reflects on the construction of the underlying value system; instead, Christianity is uncritically embraced. None touches on the literariness of the novel; instead, the text is used as a didactic instrument to promote Christian beliefs and to guide teenage readers as well as their parents. HIV/AIDS is directly introduced as a main theme of the novel as the cover displays a red ribbon (see Illustration 6.6). Attached

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6.6 Gavin and Val Kruger A Story of Hope!, 2006. Cover of the Focus on the Family Africa Edition. (By permission of Focus on the Family Africa)

to the word ‘Hope’, the symbol signifies that there is hope in the face of the epidemic. Due to the ambiguous meaning of Hope, it can also be decoded as a reference to the protagonist who is confronted with the infection. Moreover, the cover indicates its target reading audience, showing a young girl in blue jeans and a shirt. The use of a photo, rather than a painting or drawing, supports the realist mode of the literary text. The image of the girl’s face, however, is cropped just above the mouth; thus, the girl is not individualised but stays anonymous; she could be anybody. The dedication, by comparison, does not address youth but children. ‘To all the children of the world. May the story of this book be real and special to you. May your smiles never grow dim.’ The reference to children cannot only be read in terms of the readers’ age but also of their status as family members: regardless of their age, the teenage readers are children to their parents, they belong to a family or – as shown in the novel through the role of Granny – a family-like network built on mutual understanding and trust. As the name Focus on the Family Africa already suggests, this

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is the organisation’s ideal and its prime concern. In keeping with the organisation’s directive, the novel also includes a ‘Foreword to Parents’ (2-3). Parents are encouraged to teach their children about ‘life, love and sex in order to give them some form of protection against high-risk practices’ (2). This is the only teenage novel analysed in this study that openly acknowledges both teenagers and parents as addressees of the novel. In keeping with the guiding principles of Focus on the Family Africa, parents are implicated because they are considered influential in instilling values and norms in the younger generation. By appealing to the authority of parents, the organisation implies its conservative conception of family structures and hierarchies. Not only are parents advised on how to communicate the issues discussed in the novel to their children, they are even invited to read the book as well, possibly together with their children (3). On the back cover, this overt double address is also spelt out in a short book review. ‘Whether you are going through teenage life or you are a parent raising teenagers, the “Story of Hope” is a must for you.’ Written by an authority figure, Reward Ngcobo, who is the No Apologies Manager of Focus on the Family Africa, the recommendation is intended to have an impact on adults. Nokuthula Mazibuko, In the Fast Lane In the Fast Lane10 (Mazibuko 2007) is one of twenty novels published in the Siyagruva Series of Novels for South African Teens since 2002. The series is non-sequential, so the novels can be read independently. As a frame to the novels, one of the authors, Russell Kaschula, who is also scholar of African languages coined the term ‘siyagruva’, which translates as ‘we are grooving’ (Malan 2003). The term refers to the Siyagruva Scene, a dance studio located in Claremont’s Stadium in Cape Town which serves as the central setting of the novels and as a meeting place for the Siyagruva group of eight teenaged characters from different neighbourhoods with different cultures, religions and languages.11 The term ‘siyagruva’ connotes fun and entertainment, 10

11

The author and general editor of the Siyagruva series, Robin Malan, states that the novels are written specifically for South Africans with English as a second or third language (Malan 2003). While the novels are targeted at teenagers, they might also appeal to adult non-native speakers, who are not accustomed to reading foreign-language texts. Printed in large font and double-spaced with only nineteen lines per page, the text is not dense in the least and is easy to read. Like two other novels of the series, In the Fast Lane is available not only in English but also in isiXhosa, published under the title Oomashayela Phezulu in 2004 (Kaschula 2007, 76). It thus becomes evident that the series pays tribute to the diversity of languages spoken in South Africa. In addition to the characters that feature in In the Fast Lane, Brunette and Samantha, the eight characters comprise, briefly introduced, the following teenagers: Thabiso, a former dancer who sits in a wheelchair after an accident and now works as an administrator at the dance studio; Shelley, who experiences her privileges of coming from a white and affluent family as a burden; Mncedisi from the Eastern Cape with an ancestral calling to become a diviner; Regan, who loves dancing and can thus manage to free himself from gang culture; Rashaad, a Muslim who struggles to balance his religious beliefs and his homosexual identity and Zadie, who tries to abstain from sex.

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suggesting that the characters enjoy themselves at the dance studio and that teenagers will enjoy reading the books. The novels’ themes are as extensive as the repertoire of characters; the series explores social roles and identities, living conditions, violence and crimes, drugs, xenophobia or, as in the case of In the Fast Lane, teenage pregnancy and HIV/AIDS. The protagonist, Brunette, who has lived with her father in Langa, a township in Cape Town, since her parents’ divorce, spends the summer holidays with her mother in Soweto. Her friend Samantha accompanies her. Brunette’s seventeen-year old cousin Kedibone also stays with them. A few weeks before, Kedibone found out that she is HIV-positive after she gave birth to her baby. Worn out, she attempts to commit suicide. As Brunette and Samantha find and take her to the hospital in time, she can be saved. In the end, supported by her family and a social worker, Kedibone is optimistic that she will get used to living with the virus and the responsibility of looking after her baby. While in Soweto, Brunette and Samantha learn a lot about HIV/AIDS. Moreover, Brunette grows more confident and decides not to give in to sexual advances and is therefore determined not to bow to peer pressure. The story is focalised mostly on Brunette. Not infected herself with HIV but affected by the virus, nevertheless, Brunette provides her perception of HIV/AIDS. The text confronts a lack of knowledge about HIV/AIDS among its reading audience. In the Fast Lane does not provide a non-fictional section as teenage fiction sometimes does;12 instead, information is explored and negotiated in the literary text. Similar to the roles that Sara’s parents and teacher serve in Sara – The Empty Compound, Ma’ Cele, the social worker, is of great importance to the novel’s educational intent on AIDS. After Kedibone’s suicide attempt, Brunette’s mother turns to Ma’ Cele for help and arranges for her to talk to Kedibone. Thus, the need for professional help and counselling, even among adults, is highlighted. The social worker comforts Kedibone with the words, ‘After all we are all people, singa bantu sonke, mntwan’ami. Amaphutha siyawenza, it’s no use crying over spilt milk’ (45). Given South Africa’s linguistic diversity, codeswitching is represented as a common feature of everyday life, which is why Ma’ Cele’s phrase in isiZulu is not translated into English.13 Since only some words or phrases are inserted in isiZulu, readers who do not understand the language can still follow the narrative. In this conversation, the use of isiZulu serves to underscore that the social 12

13

Published by Kagiso Education of the Maskew Miller Longman group, the Kagiso HIV/AIDS Initiative Readers with five fictional stories, for example, offer a glossary of relevant terms and facts about HIV/AIDS. Compared to a coherent text as included in The Empty Compound of the Sara Communication Series, the question-and-answer structure of the information allows for an individual reading process as the readers are able to skip facts which they feel they already know. Translated into English (Kaschula 2007, 78), the social worker tells Kedibone: ‘After all we are all people, we are all people, my child. We all make mistakes, it’s no use crying over spilt milk.’

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worker tries to reassure Kedibone that she is not isolated but will receive support from her family and community. This comfort is all the more important because Kedibone’s mother, Ma’ Mokoena, distressed by her daughter’s pregnancy, threw her out of the house (28). Due to the social worker’s intervention, which again stresses that counselling is important for adults as well, Ma’ Mokoena later realises that she made a mistake (44). Not only does Ma’ Cele comfort Kedibone, she also challenges common cultural constructions of HIV/AIDS as a stigma or death sentence (50). Still, the situation is not presented in an idealised way. Despite Ma’ Cele’s support and despite their good will, the other characters are overwhelmed by Kedibone’s infection. By mistake, Brunette almost uses Kedibone’s toothbrush instead of her own. Regardless of their AIDS education at school, both she and Samantha are suddenly unsure whether one can contract the virus by using the same toothbrush. The narrator, who is located outside of the narrated world, points out that ‘Brunette felt bad about being scared of her cousin like this, but she couldn’t help herself’ (58). Brunette’s mother is faced with a similar situation: cleaning the dishes, she separates Kedibone’s plate, cup and saucer, admitting that she is only trying to be careful (59-60). These cases illustrate how the infection has instilled fear. The characters do not so much struggle with the medical implications of the infection but with its abundance of connotations. Addressing common misconceptions, the narrator exposes them as cultural constructions, without speaking from an authoritative position, and without moralising or ridiculing the characters. Not only is HIV/AIDS tackled as a projection of fears, but the various steps in a learning process are outlined in the text. Realising that all of them, including the mother, know too little ‘about this… this HIV-thing’ (60), Brunette decides to borrow books from the library. Samantha, Brunette and her mother decide to stop ‘tiptoeing around the house and whispering to one another’ (61) and instead talk to Kedibone openly and include her when working through the material to inform themselves about HIV/AIDS. When the characters tell each other what they have found out, the readers of the novel can benefit as well because the information is mostly presented in direct speech and some further aspects are added by the narrator. At one point, he comments on the characters’ worries: ‘Now they knew they didn’t have to do silly things like worrying about hugging or toilet seats, or sharing knives and forks and plates!’ (65) Evaluating their thoughts and behaviour as ‘silly’, the narrator illustrates that they were uninformed about the virus and unaware of the signification of HIV/AIDS. Still, he does not speak from a supposedly superior position as in A Story of Hope!; instead, the characters are given space to inform themselves in order to recognise and reflect on their own

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assumptions before the narrator sets the record straight to avoid any misunderstandings. The novel’s back cover features a review which is attributed to ‘a reader’ and thus to an anonymous and average, possibly teenaged reader. Unlike A Story of Hope! with its reference to an authority and open address to parents, this novel does not include features that Ewers understands as paratextual signs for adults meant to ensure that the books pass the ‘gate-keepers’. The Siyagruva series is directly and specifically targeted at teenage readers. Moreover, the back cover also provides a blurb: Remember, there are people affected by HIV as well as people infected by HIV. This is something Brunette and Samantha have no reason to worry about, until they go on holiday to the home of Brunette’s mother in Soweto. Suddenly they’re living with HIV and have to learn – quick!

Addressing the readers and creating suspense, the short and conversational description arouses the readers’ interest and invites them to share the experiences of Brunette and Samantha who are presented as ‘living with HIV’, emphasising that they are affected, even if not infected. Drawing attention to the social consequences of HIV/AIDS, the text accounts for the fact that the virus is not treated as a mere medical issue. Showing a photo of two girls, representing Brunette and Samantha, the cover of In the Fast Lane underscores that they are at the centre of attention. HIV/AIDS and teenage pregnancy are not only of concern to Kedibone but also to those around her. Moreover, the cover design pays tribute to the fact that Brunette and Samantha, unlike Kedibone, are part of the Siyagruva group and therefore feature in this and other novels of the series. As a reference to this broader context, a group photo of all eight Siyagruva characters is shown on the back cover as well as on the title page. Dianne Hofmeyr, Blue Train to the Moon Teenage pregnancy and HIV/AIDS are also of central concern to sixteen-year-old Sylvia Steytler, the protagonist and first-person narrator of Dianne Hofmeyr’s Blue Train to the Moon (Hofmeyr 1993). Written as a fictional diary (Eccleshare 2004, 547), the entries cover a short but dramatic time during which Sylvia is confronted with these issues. When she first meets Mario at a party they have unprotected sexual intercourse, which is why Sylvia is worried, at first, about being pregnant and, after Mario tests HIV-positive, about having contracted the virus. Although her worries do not materialise, she is, nevertheless, affected by HIV/AIDS because of her love relationship with Mario. Blue Train to the Moon is related from Sylvia’s viewpoint, providing the readers with her perspective on these events in her life, offering insight

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into her emotions, reactions and thoughts. The novel can therefore be considered a fictional life narrative, comparable to Adam Levin’s nonfictional journal AIDSAFARI. First published in 1993, Blue Train to the Moon is one of the earliest South African literary representations of HIV/AIDS, not only in teenage fiction. It was the 1993 winner of the Maskew Miller Longman Young Africa Award. Published in the acclaimed Young Africa series of this large publishing house wellknown for its children’s and teenage fiction, its success is also visible in its publication history: many years after its first publication, it is still in print – the fifth edition published in 2005. The diary entries cover the period from 11 October to 31 December; the exact year is neither given nor of great importance to the plot because the events are not limited to a particular year since the advent of HIV/ AIDS. Almost every day Sylvia keeps her diary, and in addition to the written text, there are several drawings – scribbling, handwritten notes, abstract patterns and small pictures – that visualise her impressions. The choice of words and typography also illustrate her state of mind. ‘If only it hadn’t happened… Why does my life seem to be a series of “if only’s”? […] if only, if only, IF ONLY!!!’ (1). This is Sylvia’s first diary entry, because she regrets sleeping with Mario. Her feelings, especially her regret, anger and insecurity, are made visible by the repetition of the phrase ‘if only’, by the syntax of her comments, by using majuscules and exclamation marks. Unsure about how to behave, she then writes, ‘I’m confused. Confused. CONFUSED’ (2). Again, the repetition, syntax and spelling emphasise her feelings. The representation of HIV/AIDS dominates the second half of the fictional diary, both in content and form, when Mario tests HIVpositive. Many central issues connected with the virus are visually highlighted, as in the case of Mario’s test. Sylvia writes in her diary, ‘Mario is having an AIDS TEST on Monday!’ (54). With this exclamation Sylvia illustrates the blow she experiences when learning the news. By using majuscules not only for AIDS, as is commonly done to indicate the acronym, but also for the term ‘TEST’, she stresses the test and indirectly its outcome. In fact, the whole sentence stands out from the rest of the text because it is positioned in the centre of the line and framed with a black zigzag-line. Thus, Sylvia’s reaction to Mario’s test and her fears about the results receive more attention than Sofia’s test in Sara – The Empty Compound, where the results are not narrated, implying that they are of comparatively little relevance. This difference in representation can be explained both by looking at the texts and contexts. Sofia suffers from discrimination in Sara – The Empty Compound but by the time she takes the test, her situation has improved as she has become an accepted member of the community. Sylvia, by comparison, has never before been confronted with HIV/AIDS; she is taken by surprise. A contextualisation of the publications supports this

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reading: the fictional diary Blue Train to the Moon was first published in 1993, whereas Sara – The Empty Compound, published in 2000, was produced at a point in time when the South African epidemic was already on the political, social and cultural agenda. In an attempt to cope with her shock, Sylvia tries to gather some information on HIV/AIDS. As she does not know whom to turn to, she starts in the school library. In In the Fast Lane, Brunette and Samantha also decide to read up on HIV/AIDS. Their time in the library is left unexplored, suggesting that it is uneventful. In Blue Train to the Moon, by comparison, the situation is noteworthy. The librarian studies Sylvia closely and asks her why she needs material on HIV/AIDS as it is not part of the syllabus, which shows that the novel is set at a time prior to the introduction of life skills and the inclusion of AIDS education in the curriculum. Finally, the librarian hands out ‘a pale blue pamphlet from under the counter and [holds] it pinched between her finger and thumb as if the paper itself was contaminated’ (57-8). This can be taken to read that the infection is eclipsed from dominant knowledge: a small pamphlet is the only material available in the school library and is stored under the counter, literally kept from view: students can only access it via the librarian. Although a library is a public space with open access to information, the production of knowledge – the inclusion or exclusion of certain aspects – is shaped by power structures. Sylvia is not able to inform herself without arousing questions and suspicion because the epidemic is generally thought of as a taboo. Sylvia accepts the little information she receives as ‘facts’ without reflection. As a result, her understanding of HIV/AIDS is shaped by the dominant social perception of HIV/AIDS. In a discussion with Mario she enquires how he contracted the virus; she wants to know whether he has had homosexual contacts – a question that implies her presumption that the virus is associated with ‘risk groups’. However, by making explicit that ‘it’s not only gays that get Aids’ (61), Mario takes issue with this widespread myth. While the information Brunette and Samantha get from reading books is presented as ‘facts’, the supposedly ‘innocent’ knowledge is problematised in Blue Train to the Moon, especially through the critical comments of Mario and an AIDS counsellor. Sylvia also explores the implications and consequences of the diagnosis, especially for Mario and herself. With HIV/AIDS an issue, Mario’s and Sylvia’s unprotected sexual relations suddenly gain in significance. At first, Sylvia’s only worry revolves around the possibility of pregnancy until, to her relief, menstruation occurs and she can forget about it (11, 19, 30). Mario’s test results, however, trigger another worry because Sylvia might have contracted the virus. Still, Sylvia is unwilling to face this possibility. Even when Mario directly asks her, ‘What about you?’ (62), she tries to ignore the risk to herself. ‘I don’t want to think what his question means. I can’t think about

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it. I feel cold inside. Even now while I’m writing, I just can’t think about it. I didn’t answer him then and I’m not going to answer myself now!’ (62) She cannot talk openly with Mario about her worries or even write them down. However, by writing in detail about how she struggles to suppress her worry, she foregrounds and emphasises HIV/ AIDS, nevertheless. When Sylvia starts to acknowledge her situation, she explores it in as much depth as she can, whether she wants to be tested for HIV. ‘Do I? Damn it all, do I? If I don’t have the test, I’ll never know if I’m HIV-positive or not. But do I need to know? How is it going to help?’ (69) Again, due to all these considerations and questions, HIV/AIDS is given much space in her diary; it is made the central issue. She also thinks about her interaction with Mario. ‘What do you say to someone when they’re telling you they are HIVpositive…?’ (61) Although she writes down different possible answers, she does not come up with a ‘solution’ because she believes all reactions are inappropriate. Still, the readers are thus encouraged to imagine themselves in a similar situation and to think about possible reactions. Mario, for example, is annoyed by people who feel sorry for him because their sympathy makes him feel hopeless (87). Instead, he wants to learn to cope and live with HIV, supported by an AIDS counsellor as well as by his family and friends. Sylvia realises that ‘Mario had already decided that he wasn’t going to shape his life by fear. […] I have to be like Mario too. I have to be positive. Everything that has happened has happened. I can’t change anything. I can only change myself’ (87). Thus, the outlook of the novel is as positive and optimistic as In the Fast Lane: both Mario and Sylvia have begun to accept HIV/AIDS as part of their lives. In the final entry on New Year’s Eve Sylvia writes, ‘I feel as if I’ve just emerged from a cocoon…as if I’ve grown up. This is a new me’ (93). Recognising this transformation and describing it poetically, Sylvia brings her old diary to a conclusion in order to start afresh in the next year with a new diary. Before putting it away, she writes across the cover of the old diary Blue Train to the Moon. Symbolically, the title refers to the Blue Train, a luxurious train running mainly between Cape Town and Pretoria, renowned for the beautiful scenery along its route, for its luxurious accommodations, excellent food and service. In the novel, Sylvia and a friend come across a Blue Train in the form of a taxi, ‘a broken-down blue Kombi that had The Blue Train painted across it’ with a driver who says, ‘Blue Train to the Moon!’ (6) From then on, they use the phrase to indicate their longing for change and a better future. With the moon as the destination, however, the phrase highlights how unlikely it is that these dreams will come true. Unable to cope with Mario’s diagnosis, Sylvia asks herself, ‘Where is the Blue Train to the Moon that can take me away from all this???’ (56) In the end, Sylvia realises, as her mother puts it, that ‘life is not a Blue Train to the Moon’

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(93). Content with her life and future prospects, Sylvia no longer tries to escape into a dream world. Lutz van Dijk, Stronger than the Storm Like Blue Train to the Moon, Lutz van Dijk’s novel Stronger than the Storm14 (van Dijk 2000) is a fictional life narrative, though not in diary form. The fourteen-year-old Thinasonke, called Thina, relates how she comes to terms with her life after she is attacked and raped by a group of three township teenagers in Guguletu, a township near Cape Town, and thus becomes infected with HIV. The novel opens with Thina’s account of how she spends a nice day in early spring on the beach with her boyfriend Thabang. Although Thina knows by that time that she is HIV-positive, her health status is not mentioned, implying that it is of no significance in this situation, neither to Thina nor to Thabang. Instead, the joyful and optimistic mood of the day sets the tone. Thus, from the very beginning, the novel emphasises that HIV/AIDS and happiness are not incompatible. While novels like In the Fast Lane or Blue Train to the Moon have an optimistic outlook, Stronger than the Storm directly opens in this mood, thus setting a different scene for the rest of the text. The description is as positive as the idyllic photo on the cover of the book (see Illustration 6.7). In the background, one can see a black girl in a white summer dress walking along an empty beach on a nice, sunny day with only a few clouds in the sky. Occupying most of the cover design, a close-up photo of a black girl smiling and looking directly at the camera is placed over this image in a photomontage. A black teenage girl is thus presented as the protagonist of the novel. Referring to Thabang and herself, Thina writes, ‘We have survived, we have overcome all of it, and absolutely nothing was in vain’ (1). She does not specify what they have been through but the choice of verbs, ‘survive’ and ‘overcome’ makes clear that she refers to a difficult time in the past. The title Stronger than the Storm has similar implications; read metaphorically, it illustrates how Thina has braved a threatening and 14

The novel was originally written and published in German under the title Township Blues. Nonetheless, it is included here for a number of reasons. First, simultaneous with the German edition, the English version of the novel was published in 2000 in Maskew Miller Longman’s distinguished Young Africa series. Second, the novel is widely read in South Africa; by 2002, the English edition was into its fifth reprint. These figures clearly indicate the novel’s commercial success, especially when bearing in mind that owning books and reading can still be considered a privilege in South Africa. Third, and closely connected with the previous point, the novel is used in schools’ AIDS education programmes in South Africa. Karen Chubb, its English translator published an accompanying guide for teachers in South Africa. A short paragraph on the back cover of the novel, addressed to adults and especially to teachers, recommends the novel and the teacher’s guide as useful instruments in AIDS education. Now available in English, Afrikaans and isiXhosa, the novel is read in many South African schools. Fourth, both van Dijk and Chubb have committed all their earnings and royalties of this novel to ‘Homes for Kids in South Africa’ (HOKISA). Founded in 2001 by van Dijk and Chubb, HOKISA is a non-governmental organisation that supports children and teenagers affected by HIV/AIDS by providing them a home. Some information on HOKISA is included at the beginning of Stronger than the Storm.

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6.7 Lutz van Dijk, Stronger than the Storm, 2000. Cover of the Maskew Miller Longman Edition. (By permission of Maskew Miller Longman, Pty, Ltd)

potentially devastating situation. By comparison with the metaphorical title Blue Train to the Moon, this one works with a conventional weather metaphor. Readers can decode its meaning before opening the book: the title shapes their expectations as does the photo on the cover. Thina does not regret the troubles she has experienced because she has gained in strength so that her confident and hopeful attitude prevails. She enjoys life, also because she can share her thoughts and experiences with Thabang. ‘It is wonderful to be able to talk about absolutely everything with him. It is a bit like therapy, good therapy’ (5). She does not try to suppress what has happened but prefers to describe her traumatic experiences and to tell her own story, which has a healing effect on Thina. Lifting a burden from her shoulders, it helps her to gain strength. ‘Being able to throw off that weight not only makes you feel light and free. If you do it in the right way, it can perhaps even make you stronger’ (20). Promoting communication and life writing as therapeutic instruments, her suggestions follow similar lines to the strategies employed by the fictional characters in Mpe’s Welcome to Our Hillbrow or by the Bambanani women in the Memory Box Project. As she relates the events of the assault and her life thereafter, Thina self-reflectively comments on the writing process. ‘Now that I have told

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Thabang the story, I want to try to write it all down. To begin with, only for myself’ (20). As the first-person narrator, Thina provides insights into her thoughts, feelings and experiences. Only towards the end of the novel does she start to think about the reception of her life narrative by others (103). In Stronger than the Storm, HIV/AIDS is first represented through Thabang’s mother. Even though the main theme of the novel is introduced through her, she is not given a name. Thus, she is characterised not as an individual but a type, as a woman living with HIV/AIDS who is primarily identified in her role as a mother. At the beginning, her illness is still considered ‘mysterious’. ‘Thabang’s mother has been ill for over a year. Nobody seems to know exactly what the problem is. Sometimes she has a cold, then she had debilitating diarrhoea for weeks on end’ (25). She has not yet been diagnosed with AIDS but the medical and social consequences already shape her life and those of her children, the teenager Thabang and the five-year-old Thobile. Suffering from various opportunistic diseases, the mother is no longer able to earn money or look after them. Taking on the role of an adult, Thabang has not been to school for almost a year. He has earned money and taken care of his sick mother and little brother. Aware of the stigmatisation surrounding the infection, Thabang wants to keep the results secret when his mother tests HIV-positive. However, needing someone to ‘confide in’ (34), he talks to Thina. ‘It is that disease…you know, the one so many people are supposed to have, but nobody wants to talk about it because most people are infected through sex… Will you keep a secret?’ I nodded dumbly. Of course I knew what he was going to say. I could barely hear his next words: ‘Mother is in the final stages of ugawulayo, of AIDS!’ (34-5)

The use of punctuation highlights how Thabang hesitates to talk about the syndrome. Due to his words and his pauses, Thina knows the diagnosis even before Thabang verbalises it. Using the phrase ‘of course’ and the verb ‘to know’ stresses the certainty with which Thina is able to identify the test results. Since she not only guesses but, in fact, ‘knows’ what Thabang is about to tell her shows that HIV/AIDS is recognised in the township, albeit not openly acknowledged. The community is indeed shown to be familiar with the epidemic as the infection has already found its way into their language. Rather than relying on the medical acronym in English only, Thabang speaks of ‘ugawulayo’ in isiXhosa. The social consequences of HIV/AIDS are made evident at the mother’s funeral and in subsequent events. Only a few people come to the funeral, ‘not even the immediate neighbours’ (41), and directly after the funeral Thabang and Thobile leave without notice or trace. Like Thina, who narrates the story, the readers are also left in the dark as to

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why they ran away until, weeks later, Thina meets them, by chance, in Cape Town. She learns that even before the funeral people had accused Thabang of having ‘brought shame not only to the family but to neighbours in the whole street’ (62). They blamed him for not managing to keep secret his mother’s health status and cause of death. When they threatened to burn down the family’s house, Thabang and Thobile ran away. In fact, Thina also encountered the suspicion and hatred of Thabang’s former neighbours. One scolded her, ‘Don’t you know that she slept around? That’s how she got sick! How else? A punishment for her sins, you can be sure of that…’ (42). With this accusation the neighbour presents Thabang’s mother as a member of a ‘risk group’ and holds her accountable for what is held to be socially unacceptable behaviour. Regardless of how Thabang’s mother contracted the virus, the strategy of conceptualising HIV/AIDS in terms of a punishment helps the neighbour to distance himself from the epidemic and blame it on marginalised social groups. Standing up for his mother, Thabang later criticises this mythification as ‘nonsense’ (62). As the mother was raising the children all by herself, she needed money and food and, in order to provide for her family, she had a relationship with an older man, perhaps hoping for financial support.15 Telling Thina how he assumes his mother contracted the virus, Thabang is careful to contextualise his explanation in order to stress that his mother can hardly be reproached for her behaviour. The notion of HIV/AIDS as a stigma – certainly a central aspect of the representation of Thabang’s mother – is introduced in the dedication of the novel in which the reader is first made aware of its focus. ‘This novel is dedicated to Gugu Dlamini, a young woman from KwaMashu near Durban who was murdered by her neighbours after she divulged her HIV-positive status on radio and TV on International AIDS Day, 1 December 1998.’ A connection is thus established between ‘fact’ and ‘fiction’. It is made clear that although it is a fictional account it can be read as an aesthetically mediated reference to the realities in contemporary South Africa. The following quote by Nelson Mandela from July 2000 also precedes the literary text. ‘In the face of the threat posed by AIDS we must rise above our differences and combine our efforts to save our people. History will judge us harshly if we fail to do so, and right now.’ Mandela’s words give credence and significance to the imperative of facing HIV/AIDS. Indirectly opposing silence and stigma, Mandela calls for solidarity and community. He uses pronouns of the first person plural – ‘we’, ‘our’, ‘us’ – to underline his message 15

As Thabang explicitly refers to one older man, his comment does not so much imply that his mother worked as a prostitute, but suggests that she had what is commonly known as a ‘sugar daddy’, a benefactor who offers material benefits in return for a sexual relationship. Sociologists speak of ‘intergenerational sex’ to address sexual relationships between partners of different age groups – stereotypically between younger women and older men. These relations are held to be ‘an important social determinant of HIV infection’ (Shisana et al. 2009, 40).

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that all people are asked to face the epidemic, regardless of their age, gender, race or class. The story of Thabang’s mother provides the context within which Thina’s assault and infection are located. Early one evening on her way home, Thina is mugged and brutally raped by three young teenagers (28-30). Although the crime is of great relevance to the plot, it is discussed in some short paragraphs only, making up no more than two pages (out of more than a hundred pages of the entire book). It thus becomes clear that the novel is not so much concerned with the assault as such but with Thina’s ways of handling the traumatic experience and the reactions of her family, her friends and her teacher. Like Sylvia in Blue Train to the Moon, Thina’s fears first circle around a possible pregnancy (31, 33). Even when she finds out that she is not pregnant, the loss of her ‘innocence’ still worries her deeply. That virginity is of no particular concern to Sylvia but of significance for Thina has cultural reasons. Thina was raped but still, with her ‘innocence’ lost, she is regarded as a ‘ruined girl’ (31) in the Xhosa community. This reputation will affect her whole family clan, both in regard to the family’s pride and the lobola, the bride price Thina can claim. To save Thina’s and the family’s honour, Thina’s mother and grandmother do everything to keep the rape a secret and instead claim that Thina is the victim of a robbery. Within the family, however, the rape and its possible consequences are addressed. Her grandmother points out that it is possible that the rapists infected her with ‘some or other disease’ (33) but Thina ‘[does] not want to know what the phrase could imply’ (33). Only when Thabang tells Thina of his mother’s infection is she no longer able to suppress her fear but realises that she is at risk of having contracted HIV. Still, she does not want to undermine her mother’s and grandmother’s efforts to keep the rape secret, which is why she does not share her worries with Thabang. In fact, it is not until weeks later when she is back at school that Thina voices her fears of having contracted the virus. Hesitatingly, she confides in her teacher, Miss Delphine, who suspects that Thina has held back information and fears. Unlike the stigmatisation that often surrounds HIV/AIDS and that Thabang’s mother and her children have experienced, the benefits of Thina’s disclosure are stressed. Telling Miss Delphine in detail about the incident, describing her physical and mental pain, Thina cries and feels relieved. ‘For the first time, I was able to share my deepest fears with another person’ (51). The conversation with Miss Delphine has the same therapeutic effect as narrating and writing down her experiences later. Although Carlotta von Maltzan characterises Thina’s courageous behaviour as exemplary (von Maltzan 2006, 196), she still criticises Stronger than the Storm as unrealistic. According to her, the novel loses its credibility because the positive responses do not correspond with the reality in contemporary South

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Africa (ibid., 195). However, this teenage novel is a fictional construct that adheres to its own aesthetic and didactic conventions. Presenting a harmonious ‘solution’, the novel affirms its audience’s hopes and wishes. In the face of the HIV/AIDS epidemic, it sustains the political and social ideals of the ‘New South Africa’, made all too obvious in the presentation of how Thina comes to terms with the assault. Not only does Miss Delphine, an educated, privileged young woman stand by Thina, but also Thabang and her older brother Mangaliso. Thus Thina can come to the conclusion that ‘I would not have to fight my personal battle against the disease on my own. Thabang and Mangaliso were on my side without reservations of any kind’ (94). It is her ‘personal battle’ because she is the one infected with HIV; yet, she does not stand alone. The use of the battle metaphor is relevant because Thabang investigates the identity of the three rapists in order to take revenge for their deed. However, his plan to murder the perpetrators fails. Where his purpose is based on hatred and revenge, Mangaliso’s non-violent strategy is presented as an effective solution. It aims at reconciliation instead of perpetuating the problems and crimes. In keeping with the values of solidarity and community called for in Mandela’s quote, Mangaliso promotes the tradition of ubuntu. ‘We can only become human if we look for humanity in others, for as long as it takes to find it. Umntu ngumntu ngabantu – I am what I am through you’ (91). According to Mangaliso, Thina ‘can become stronger, wiser, more humane’ (92), not by forgetting what the three boys did to her but by facing them and listening. Although Thina does not quite understand these philosophical ideas, she follows Mangaliso’s advice. Marked by his past under apartheid when Mangaliso was detained without trial for several months, Thina considers her brother a figure of authority in these matters of violence and reconciliation. Moreover, this character constellation corresponds to gender stereotypes, according to which men are in charge and guide women. When Zweli, one of the rapists, speaks to her, Thina learns how he hoped that sleeping with a virgin might, after all, cure him of the virus. Zweli does not deny his responsibility but asks for forgiveness and exposes ‘his own truth in all its ugliness and guilt’ (92). The crime is thus neither played down nor justified. Confronted with the naiveté and gullibility of Zweli’s perspective, Thina is able to see human qualities in him so that she does not consider him ‘a faceless monster’ anymore (94). Mangaliso’s reconciliatory approach of ubuntu is represented as successful in that it has helped to overcome feelings of revenge and to prevent further crimes.16 This outcome feeds into the novel’s tone of optimism and 16

The plot of Sindiwe Magona’s play Vukani! (2003) is similar to van Dijk’s Stronger than the Storm. Set in post-apartheid Guguletu, it also takes issue with the popular myth that sexual intercourse with a virgin can cure HIV/AIDS. Believing in this myth, the seventeen-year-old HIV-positive Vuyo rapes the fourteen-year-old Zama. In order to decide on his punishment, a community council that promotes the ideas of ubuntu is set up. Koyana, one of the adult characters, explains ubuntu as

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strength. It is also in keeping with the official reading of South African history which endorses the political transition from racial oppression under apartheid to democracy in the ‘New South Africa’. The final clauses of South Africa’s interim constitution highlight that the divisions and strife of the past, which generated gross violations of human rights, the transgression of humanitarian principles in violent conflicts and a legacy of hatred, fear, guilt and revenge […] can now be addressed on the basis that there is a need for understanding but not for vengeance, a need for reparation but not for retaliation, a need for ubuntu but not for victimization. (Constitution of the Republic of South Africa 1993, Chapter 15)

Subsequently, the Truth and Reconciliation Commission (TRC) was established to take on the past and to advance the reconstruction of society. These concepts also structure Stronger than the Storm (von Maltzan 2006, 188). Mangaliso, who is characterised as a victim of racial oppression under apartheid, does not advocate revenge but – consistent with the philosophy of the TRC – practises ubuntu. Following this non-violent strategy, he frees Thabang from his wish for retribution and enables Thina to grow stronger and to forge her future. Read in educational terms, the novel thus promotes values of solidarity and moral integrity in its readers by presenting ‘ideal’ patterns of behaviour. Thina also meets with the open-mindedness and acceptance of her fellow students when she discloses her HIV-status to the drama group. By then she is coping so well with her HIV-status that she can tell them about her infection ‘spontaneously’ and ‘without any dramatics’ (103). The positive responses of the drama group to Thina’s disclosure add another dimension to the construction of HIV/AIDS in Stronger than Storm. With the help of Miss Delphine, the students write their own play, a modern rendition of Shakespeare’s Romeo and Juliet dealing with the epidemic. Touching upon a taboo topic, Miss Delphine correctly anticipates that the play will be considered a provocation. Because of this project, the teacher herself becomes a target of heavy criticism and threats. Her car is vandalised and ‘someone had scratched the word IGQWIRHA [witch] into the enamel’ (50). A note left in the car reads, ‘To the biggest slut of Forrest Hill! You with your filthy talk about condoms and safer sex, do you want to turn our girls into prostitutes? Next time it will be you!’ (50) Although this attempt at blackmail is not further investigated in the novel, it becomes clear that the drama project is considered an affront to the township community. (contd)

follows: ‘The goal of punishment is not to destroy the transgressor, but to restore him to his basic humaneness’ (Magona 2003, 204). In the end, Vuyo is banned from social activities in the community for five years, has to pay reparations to Zama’s family and, as a means of AIDS education, must tell his story in local schools.

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The incident serves to counter-balance the supportive attitude that most of the characters have shown to Thina’s disclosure. It makes evident the extent to which HIV/AIDS is considered a taboo topic not to be discussed even in the school context or the performance of a drama group. For these reasons, the working title Shakespeare’s Condom is changed to the less explicit and offensive Township Blues. In the end, the play turns out to be a great success; the students perform to a full house over several evenings, both in the township and in a suburb of Cape Town (102). Jenny Robson, Praise Song Like Stronger than the Storm, the novel Praise Song17 (Robson 2006) does not represent HIV/AIDS as isolated, but explores related issues, including questions of punishment and justice. The seventeen-year-old girl and first-person narrator Gaone writes retrospectively about the events that take place in a small town called Meriting in November and December 2002, especially about the murder of her English teacher and choir mistress, Miss Thozama Diko. She is killed a few days after she announces during a public commemoration on World AIDS Day that she is HIV-positive. The murder story is interwoven with other plot lines that deal with the programme of the World AIDS Day commemoration, with Gaone’s family life, her worries about her younger sister Precious, her memories of her mother who died of AIDS-related diseases many years earlier and with Ebenezer, an HIV-positive senior student who retaliates by trying to pass on the virus through unprotected sex. Covering a time span from 29 November to 13 December 2002, the events of eight days are presented. Withholding information and only hinting at some aspects of the story, Gaone creates suspense and simultaneously points out that some topics are considered taboo, which is why she shies away from writing explicitly about them. In Blue Train to the Moon, Sylvia also weaves her way around HIV/ AIDS rather than confronting it. In Praise Song, the form underscores that HIV/AIDS and murder are eclipsed from representation. Literally evading and postponing these issues, the novel is not organised chronologically but in non-sequential chapters, written for example about the World AIDS Day on 1 December. Despite this equivocation, Gaone’s minuscule-spelling ‘Aids’, used throughout the novel, has the same function as in Adam Levin’s life narrative AIDSAFARI: indicating that the concept has been integrated into written English, the spelling underscores Gaone’s familiarity with the epidemic. 17

Praise Song received the 2005 Sanlam Gold Prize for Youth Literature. To market the novel as an award-winning book for teenagers, the title page announces this award. More prominently, however, the cover bears a sticker that also states the fact. Resembling a gold medal both in form and colour, the sticker catches the attention of potential buyers, especially of adults who might look for and be influenced by such a recommendation. In fact, this reference to the prize is the only paratextual element that targets adults rather than the novel’s specific teenage audience.

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Stressing Miss Diko’s fine qualities and especially her courage to speak out, Gaone gives a positive description of her teacher and thus creates what in her community is called a ‘praise song’ (128), even though it is a written, not an oral text. In his literary history Southern African Literatures, Michael Chapman states that the praise poem is ‘southern Africa’s most characteristic form of literary expression’ (Chapman 1996, 55). While commonly associated with leading public figures such as kings or chiefs, it has also had social relevance as ‘praises provided and continue to provide a focus of communal identity and solidarity’ (ibid.). Written as a novel, Praise Song does not adhere strictly to the conventions of a praise poem but appropriates the genre to pay respect to those who speak out about HIV/AIDS, be it the fictional character Miss Diko or people like Gugu Dlamini, to whom the novel is dedicated. Drawing on another genre, the novel opens like a conventional crime story with the corpse of Miss Diko and the ongoing police investigation. Yet, the novel’s main concern is not the investigation of the crime because the motive for the murder is already known to the members of the community (29). Miss Diko is stoned to death because of her public disclosure – a crime that is reminiscent of Gugu Dlamini’s murder. It is only the police who do not have a clue as to the reason (11, 13) because they do not belong to the community and thus do not know about the disclosure or about the community’s denial of HIV/AIDS. The police do not seem to get very far with identifying the perpetrator. Although Gaone knows from the start that her aunt committed the murder, she keeps this knowledge to herself for fear of the consequences. In the novel, HIV/AIDS is prominently thematised in connection with World AIDS Day. In the town Meriting, the Committee for Community Development and Upliftment (CCDU) plans an AIDS commemoration. Busy organising the day as the CCDU-president, Gaone’s aunt prepares a banner with the slogan ‘KEEP MERITING AIDS-FREE’ (38, 46, 49, 50, 79, 99) painted in bright red capital letters. Mentioned several times throughout the whole novel, the slogan receives much attention. However, the narrator Gaone picks it up repeatedly, not because she agrees but because she struggles with it. Looking at the banner ‘with disbelief’ (38), shaking her head about it and considering the slogan ‘ridiculous’ (38), ‘ironic’ (50) and ‘a lie’ (46), Gaone writes clearly and openly about her dislike, though she keeps silent in her aunt’s presence. She goes on to interpret the slogan and to explain why she objects to it. Around the world, the official AIDS Day slogan is ‘LIVE AND LET LIVE’ (46, 62); it is meant to make people think about ‘our five million citizens who are already living with HIV’ (46) and ‘to acknowledge that the disease had already touched so many of our people and that it was up to the rest of us to show them kindness and compassion and not to judge them’ (46). Gaone uses pronouns of the

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first person plural – ‘our’ and ‘us’ – to stress solidarity: people living with HIV/AIDS shall be accepted as equal members of the community and not to be ostracised or looked down upon. This attempt at creating social inclusion corresponds to the generic features and functions of praise texts. In Meriting, however, the CCDU coins its own slogan which Gaone believes to be counter-productive to the directive of the World AIDS Day. Rather than paying attention to HIV/AIDS, this slogan denies the presence of the virus in this town. Gaone exposes the statement as deceit when she points out how much time and effort the CCDU spends on securing and perpetuating the myth of an AIDSfree town: Our citizens get sick and then die even though they are still young, but the CCDU hands out programmes for their funerals declaring that they passed away due to pneumonia. Or malaria. Or after a long illness. And the Meriting cemetery spreads out beyond its brick walls, filling with graves, even the tiny graves of tiny children. (49)

Describing the people living with HIV/AIDS in Meriting, Gaone speaks of ‘our citizens’ and thus includes them in the local community. Rather than pointing her finger at them, she criticises the CCDU for denying and playing down the impact of the virus. Moreover, the phrase shows that she considers herself as part of society, although keeping a distance from the public perception of the epidemic. Enumerating the various supposed and less stigmatised causes of death – ‘pneumonia’, ‘malaria’, an undefined ‘long illness’ – Gaone gives examples of how the infection is commonly veiled. Such strategies can frequently be encountered in South African representations of HIV/AIDS: in his cartoons, Zapiro playfully engages with the speculation about the causes of death of Parks Mankahlana and Peter Mokaba; as the title of her poem ‘Nobody Ever Said AIDS’ implies, Eddie Vulani Maluleke addresses the denial of the infection and its deadly consequences; in Sara – The Empty Compound, Sofia’s father-in-law claims that his son died of ‘cancer’ because he is unwilling to acknowledge the cause of death and make it known in the community. This variety in media and genres indicates the extent to which artists have forged creative responses to the epidemic, thereby challenging the silence surrounding HIV/AIDS. Unmasking the work of the CCDU, Gaone positions herself in the discussion of HIV/AIDS and characterises herself as critical and analytical, as interested in and informed about the virus. In fact, she reads all the AIDS material to which she can gain access (17, 49, 62). Although the text does not address and problematise the construction of knowledge presented in this material, Gaone’s continuous effort to gather information can be read as a sign that each book, article, leaflet or poster offers additional meanings. Moreover, this interest in

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exploring the issue in detail serves as a means of characterising Gaone. Commenting on her behaviour, her younger sister Precious calls her ‘obsessed, completely obsessed’ (17) with this issue. From the very beginning of the novel, Gaone points out that she has ‘good reason to be obsessed’ (17) but does not explain openly to the readers what this ‘good reason’ is. Mostly through indirect hints and allusions the readers can imply that her interest is fuelled by her mother’s death of AIDSrelated diseases many years earlier. In Gaone’s memories, her mother is presented as kind and loving (44, 50) and also as sick and dying, as indicated by her skeletal body (28, 44) and her sore mouth (28, 70). In addition to these symptoms, often found in people with the syndrome, further descriptions suggest that the mother suffered and died from AIDS: the reaction of their neighbours, who avoid the family and who do not help the sisters after they have become orphans (51, 70), and the solitary funeral attended neither by friends, relatives nor neighbours but only by the two daughters and a pastor (55). Thinking about the widespread perception of the virus as ‘God’s way of punishing people who misbehave and do not live by the Bible’ (50), Gaone asks herself why people like her caring mother should be punished. Although she does not criticise this notion as a cultural construction, she questions the logic of this assumption. Only once does Gaone verbalise her mother’s infection and cause of death. In an attempt to educate and warn Precious, Gaone says, ‘Precious, no matter what you think, no matter what our aunt says, the truth is that our mother died of AIDS’ (71). By presenting her statement in absolute terms as ‘the truth’, Gaone leaves no room for interpretation or speculation and even confronts their aunt’s claims. Constructing a less stigmatised cause of death for the benefit of both the children and herself, the aunt claims that their mother died of TB. Despite her critical attitude towards her aunt, Gaone does not confront her with the denial and stigmatisation of HIV/AIDS practised by the CCDU nor with the fact that her aunt fabricated the cause of her mother’s death. Even though Gaone knows that her aunt is guilty of murdering Miss Diko, she does not openly accuse her (117). For fear of negative consequences and out of worry especially for her younger sister, she does not speak out but expresses her criticism and accusations only in this written ‘praise song’ for her teacher. The novel thus takes issue with the power structures and social consequences that play into Gaone’s decision. The two sisters are dependent on their aunt because she took them in when they lived on the streets after their mother’s death (56, 58). Precious’s descriptive name indicates how ‘valuable’ she is both to her late mother and her older sister; and Gaone promised her dying mother that she will take care of her. Therefore Gaone does not want them to become homeless again, which would indeed happen if their aunt was arrested for Miss Diko’s murder.

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Weighing up the two possibilities one against the other, holding back information or charging her aunt with murder, Gaone’s thoughts are dramatised and presented in a dialogue style as she speaks to herself (117-18), thus providing a vivid account of her reasoning. In the end, Gaone decides to keep quiet. Since the police are unsuccessful with their murder investigation, Gaone’s aunt is not convicted of murder. Nonetheless, she is brought to justice because there are, as Gaone explains, ‘other kinds of justice, more hidden and more secret, yet just as powerful’ (111). Gaone uses her aunt’s denial and fear of HIV/AIDS to punish her. Apparently worried, she speaks to her aunt about the deep cut in her aunt’s hand, which she has had since the World AIDS Day when she cut herself because she did not concentrate on chopping the food but raged on about Miss Diko’s public disclosure. ‘Aunt,’ I said. Oh so quietly. Oh so undramatically. ‘Aunt, you should take care of that wound of yours. You should keep it bandaged. It is dangerous when it is still not healed. What if someone else’s blood fell on it – someone who was infected with HIV? Their blood would get into your wound. The virus would be able to get right through into your bloodstream…’. (125)

Her aunt reacts with terror, with ‘blind and overwhelming terror’ (126) to this seemingly innocent and well-meaning advice, which is why she tries to clean the wound by scrubbing it and pouring antiseptic into it. Gaone knows that ‘that terror will be with my aunt always […] because of course she will never, never allow herself to be tested’ (126). The phrase ‘of course’ and the repetition of ‘never’ emphasise how sure Gaone is that her aunt will not take a test, but would rather live with the uncertainty of whether she contracted the virus when she killed Miss Diko. It is this uncertainty that Gaone refers to when she concludes that there are ‘punishments both more unbearable and more fitting than the laws and the judges and the courts and the prisons of our country can offer’ (126). Although Gaone’s aunt is not charged, arrested, tried, convicted of murder or imprisoned, poetic justice has been done because she will live in fear for the rest of her life. Miss Diko’s role and especially her public disclosure that triggered the crime are of central concern in the novel. For a performance at the commemoration, Miss Diko and the school choir prepare the wellknown song ‘Paradise Road’ by Joy, a black South African women’s group from the late 1970s and early 1980s. Not only are lines of the lyrics to be found on the cover but also throughout the novel (14-15, 19, 20, 31-2, 67-8, 78, 80, 106). Indented and printed in bold italics, the lyrics stand out from the rest of the text so that the song’s intertextual significance for the novel is highlighted. Although the song was already produced in 1980, before HIV/AIDS had even been given its medical name, Miss Diko considers it ‘a perfect song for World Aids Day’ (10)

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because the lyrics can be read metaphorically and applied to the South African epidemic: There are better days before us And a burning bridge behind us Fire smoking The sky is blazing… (15, 106)

Even more so than the song, the lead singer of the band Joy, Anneline Malebo, had a share in addressing HIV/AIDS. Miss Diko explains to the choir that long after the success of the band, Malebo made news again in 2002: she announced in public that she was HIV-positive, infected when she was raped (17-18). By the time of her disclosure she suffered from many opportunistic diseases that mark the onset of AIDS; and in August 2002, she died (18-19). Miss Diko has a high opinion of the singer which she clearly expresses in her exclamation that Anneline Malebo ‘disclosed her status in front of the whole country. How much courage that must have taken!’ (19). Not only does this admiration for the singer have Miss Diko prepare ‘Paradise Road’ with the choir, but she even follows the singer’s example when she makes her HIV infection public in her speech on World AIDS Day. Writing around the disclosure, Gaone presents HIV/AIDS as a taboo topic. Throughout the text, several indirect and vague references to Miss Diko’s ‘Aids Day speech’ (45) are made. She is criticised for her ‘crazy speech’ (58) in which she said ‘such things’ (25, 58), a phrase that sounds as if the message of her speech had already been conveyed and that the readers would be familiar with what she had said. It is also emphasised that Miss Diko used the loudspeakers to speak out so that everybody could hear and was, in fact, made to listen to her (25, 82, 96). Furthermore, Gaone relates the reactions of the audience: embarrassment (25, 82) and outrage (44-5, 84, 94), so that some (honoured) guests even left the function (82). More information concerning the content and wording of the speech, which is necessary to have the readers understand the situation, is only conveyed later. Cataphoric references, which link forward to information given later in a text (Halliday & Hasan 1976, 17), are used as rhetorical figures to make the text cohesive and to create suspense. Compared to other stylistic devices with similar effects, however, a cataphora is intellectually demanding because well-developed cognitive competences are necessary to decode such references. The novel thus gains in complexity. After the choir performed the song ‘Paradise Road’, Miss Diko relates the case of Anneline Malebo, with the audience ‘nodding sympathetically’ (81) – a harsh contrast to the reaction Miss Diko will later face. The very beginning of her talk is presented in direct speech (81). However, once she begins to address the epidemic, the direct speech gives way to a short description by Gaone. According to this narration, Miss Diko explains ‘in clear and precise language exactly how Aids was

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transmitted. She used words that had never been heard before in that hall, words that had never before been broadcast through loudspeakers in our town’ (82). This passage and later references to her ‘rude words’ (108) make clear that Miss Diko breaks a taboo in her speech, both with regard to its content and register. Considered unmentionable, her vocabulary is not spelled out, but only classified meta-linguistically. Since the passage is not presented in direct speech but filtered by the narrator, the readers can hardly decide for themselves whether they agree with the criticism. Later, at least some of the terms Miss Diko used are quoted, ‘words like “condoms” and “penis” and “vagina”’ (98), though not in context or full sentences. Although the choice of words is considered inappropriate by the audience, Miss Diko uses nothing but the formal and scientific vocabulary of a technical register. Still, her AIDS education is categorised as offensive. This position is reminiscent of the reviewers’ evaluation critically addressed in Mpe’s novel Welcome to Our Hillbrow when the protagonist of Refentše’s story encounters difficulties in publishing her Sepedi novel on HIV/ AIDS as it is held to be ‘vulgar’. Both cases problematise the difficulty in finding a ‘language’ to tackle the issue. Miss Diko’s public disclosure as HIV-positive aggravates the situation. Unlike the singer Malebo, thought of as an ‘innocent woman infected’ (81), Miss Diko explains that she was infected through unprotected sexual intercourse as a ‘young girl in love’ (98). This difference in how the virus was contracted feeds into the audience’s altered reaction. Miss Diko is not seen as ‘innocent’ but held accountable for what is considered ‘irresponsible’ behaviour. Moreover, the audience perceives Miss Diko’s disclosure as ‘personal’ (98), whereas they know the life story of the public figure Anneline Malebo only at a distance and indirectly through media reports. In her final sentences, Miss Diko states the reason for her public disclosure. ‘If this saves even one young person’s life, then it is worthwhile to me. Then I won’t regret that I stood up here in front of you and said what I have said’ (99). Her motive for speaking out is again presented in direct speech, thus emphasising her words as strong advice to both the fictional audience and the teenage readers. The accommodation to teenagers is made obvious in the didactic quality of her words, for she speaks about a young person and addresses issues of great interest to teenagers, such as (first) love and sexual experiences. Her words also add to the novel’s cohesion because they are relevant in another plot line where they serve as a warning to Precious. Feeling attracted to Ebenezer, a good-looking senior choir boy, Precious is willing to have sex with him, as she tells Gaone later (119). When Ebenezer starts singing ‘Paradise Road’, however, Precious is taken aback. Reminded of Miss Diko’s speech on World AIDS Day, Precious reconsiders her attitude to sexuality and realises the risk of

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contracting HIV/AIDS. Thus, Miss Diko’s wish has indeed come true: her voice has been heard because Precious does not have sex with Ebenezer. This outcome underscores that the novel’s construction follows, after all, the principle of poetic justice, although Miss Diko is murdered. Not only does Gaone’s aunt live with the fear of having contracted the virus when committing the murder, her crime cannot make undone Miss Diko’s speech, which still reverberates after her death. Through plot and character construction, the significance of her words is emphasised when the readers learn that Ebenezer is HIVpositive and tries to take revenge for his infection by passing the virus on to as many girls as possible (103-4).18 By speaking out about HIV/ AIDS, Miss Diko indirectly ‘saves’ Precious. 18

The novel does not clarify how Ebenezer contracted the virus. It merely touches upon some widespread public perceptions, without, however, problematising them. There are rumours that Ebenezer has an affair with an older and married woman, Dorianna Molefe. In analogy to the more established term ‘sugar daddy’, she is referred to as his ‘sugar-mama’ (33) which implies that she gives Ebenezer presents and money in return for company and sex. By suggesting such a relation, Praise Song goes against the stereotypical representation of sugar daddies who are depicted more frequently than their female counterparts. Mrs Molefe’s husband works as a truck driver, driving around many countries in southern Africa. Truck drivers have a bad reputation, as Gaone points out, because they are said to frequent prostitutes along their routes, thereby infecting themselves and bringing back the virus. Although Gaone is careful to stress that it is ‘unfair and wrong’ (35) to blame the rapid spread of HIV/AIDS on truck drivers because ‘many other reasons’ (35) play into the epidemic as well, she still fears that Ebenezer might therefore be ‘at risk’.

7

Afterword MEANINGS MATTER

Playing off the theme ‘Breaking the Silence’ used for the Durban International AIDS Confence in 2000, the focus here has been on texts that address the virus more or less directly, thereby breaking with the pervasive culture of silence that, in turn, also upholds the secrecy and stigma associated with the infection. Functioning as what Jürgen Link calls interdiscourses, the texts reach beyond the purview of expert groups of medical doctors, biologists, sociologists or statisticians in that they circulate knowledge about HIV/AIDS in society as a whole. In so doing, they raise awareness of the infection among South Africans and sustain political efforts to curb the epidemic. Nonetheless, texts do not simply ‘reflect’ and ‘transmit’ realities to a broad public, they also contribute to the cultural construction of the virus. For these reasons, the communication process is not straightforward but involves complex activities of producing, circulating, distributing and consuming meanings. Cultural products are polyvalent and open to various, possibly contradictory readings; therefore, they cannot provide ‘solutions’ but can serve as a starting point by encouraging further debate in the discussion around HIV/AIDS. These arguments trigger the question about the potential and function of intellectual reflection on the epidemic. Paula Treichler cautions that although HIV/AIDS can be described in terms of its cultural construction, ‘this by no means liberates us from taking responsibility for the existence of the real, material world and analyzing its intersection with our conceptions and interventions’ (Treichler 1999, 175). Compared to activist and medical interventions that engage in HIV/AIDSrelated challenges such as providing equitable access to treatment or researching for a vaccine or cure, this academic venture can be of no such immediate social relevance or direct consequence to those living with the virus. Nonetheless, even in the face of politically, socially and medically pressing matters such as HIV/AIDS, something can indeed be gained from scholarship. Through intellectual investigations and textual analyses, scholars can contribute to tackling the epidemic in that they identify and critically reflect upon the signification which has very ‘real’ consequences because it ‘makes sense’ of the infection. For example, as HIV/AIDS is entangled in diverse fields of knowledge and

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222 Breaking the Silence

practice, metaphorical representations of the virus are ubiquitous in everyday life, in interdiscourses and in special discourses. They seem to be ‘natural’ and therefore easily go unnoticed, whereas they should – as Susan Sontag has shown – be analysed, discussed, criticised, belaboured and exposed. From this vantage point, academic research on the signifying processes is, after all, socially relevant. In fact, I share Lawrence Grossberg’s ‘continuing belief that intellectual work matters, that it is a vital component of the struggle to change the world and to make it more humane, and that cultural studies, as a particular project, a particular sort of intellectual practice, has something valuable to contribute. Cultural studies also matters!’ (Grossberg 2006, 2) Pursuing an African cultural studies approach defined by its interventionist and democratising agenda, scholars like Keyan Tomaselli would probably understand the ‘struggle to change the world’ in a more literal way. Reading it metaphorically along the lines of British cultural studies, by comparison, this ‘struggle’ might not have such an impact on the material realities of the world, but it still can – and does – make a difference. The privileged position of scholars allows for distance from which to discuss issues without being personally involved or affected. ‘The intellectual’s armchair is, indeed, a considerably less hazardous – and possibly less effective – political location than the revolutionary battleground. Even so, it remains a crucial sphere of influence’ (Gandhi 1998, 63). Working towards such a ‘political location’, my study has forged a critical response to the signification of the South African epidemic. With its methodology and thematic focus of a British cultural studies approach centred on South Africa, it provides a distinct analytical perspective that contributes to the research and practice of African cultural studies and broadens the medical, economic, sociological, political, historical, cultural and ethical angles from which the South African HIV/AIDS epidemic has been explored. The ongoing debates about African and British cultural studies show that, while cultural studies is concerned with exposing and analysing relations of power, research does not ‘rise above’ but is itself entangled with political forces. Consequently, cultural studies can provide a critical reading of cultural phenomena and their contexts but cannot present a ‘neutral’ or ‘objective’ view. The practice of cultural studies has to be self-reflective as scholars need to take into consideration the cultural construction of their own work as well. As a ‘participant in the very practices, formations, and contexts he or she is analyzing’ (Grossberg 1997, 267), the scholar has to reflect on his or her ‘own relation to the various trajectories and dimensions, places and spaces, of the context one is exploring and mapping: theoretical, political, cultural, and institutional’ (ibid., 268). An investigation is therefore always defined by its research imperatives and purposes, its disciplinary,

Afterword: Meanings Matter 223

institutional and geographical contexts. Focussing on the analysis of HIV/AIDS, the conceptual limitations of research are particularly prominent. Corresponding to her ‘prologue’, Paula Treichler decides to write an ‘epilogue’ rather than a ‘conclusion’ on the cultural relevance of the epidemic: ‘Given the complexities and historical significance of the AIDS epidemic that this book has attempted to chronicle, I cannot bring myself to call this final section a conclusion. Indeed in the face of an epidemic that continues to continue, the word is arrogant and untrue’ (Treichler 1999, 315). With this ‘afterword’, I do not mean to suggest that further discussion is redundant and outdated or that the epidemic was ‘solved’ or ‘contained’. On the contrary, as questions about the future dynamics of HIV/AIDS as a global pandemic or as a South African epidemic cannot be answered, this book is intended to contribute to a critical, comprehensive and ongoing engagement. Several of the literary and cultural texts included in this study were hitherto largely unexplored although their signification of HIV/AIDS also deserves academic recognition. Furthermore, it remains to be seen if and what impact the political efforts of Zuma’s government to promote an effective prevention and treatment policy have on representations of the South African HIV/AIDS epidemic. It will therefore certainly be worthwhile to revisit and research South African representations in order to track the production of meanings and public perception of the epidemic over the next years and decades.

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Index

A Luta Continua 111-13 A Red Ribbon Around My House 69-72 abstinence 108, 194-6 Achmat, Zackie 89, 113, 140 founding member of Treatment Action Campaign 39, 87 involved in struggles against apartheid and HIV/AIDS 106, 178 refusing antiretrovirals 141-2, 179 African healers 135-7, 160-2 AIDS (Acquired Immune Deficiency Syndrome) definition of 11 denial of symptoms 45, 52, 55, 173, 178 dissident views 35, 158 misclassification of cause of death 46-50, 75, 192, 215 opportunistic infections 11, 167, 174-5, 208, 216 ridiculing translations of acronym 108, 123 wasting syndrome and weight loss 118, 130-1 AIDS Coalition to Unleash Power (ACT UP) 5 AIDS policy of South African governments see also Mandela, Mbeki, Zuma under apartheid 108 during transition to ‘New South Africa’ 32-3 during Mandela’s presidency 33-4, 81, 109 during Mbeki’s presidency 34-40, 109 during Zuma’s presidency 40-2,

74, 86-7, 104n.7, 223 inconsistencies within state policies and practices 38 alternative treatment 135-7 Africa’s Solution 152-9 Amazing Grace 146-52 confusing discourse of choice 1456, 158 herbs 146, 160 Lazarus Programme 157 special diet of African potato, lemon, garlic, olive oil 36, 40-1, 134, 145-6, 156, 169 see also Manto Tshabalala-Msimang Virodene 33-4, 134, 153 antiretroviral treatment see also Treatment Action Campaign costs 36, 77 drug patents v. generic drugs 3940, 109, 147, 174, 179 eligibility 74-5 highly active antiretroviral therapy (HAART) 14, 36, 73 medical management of HIV/AIDS 4, 10, 14, 29, 46, 170, 176 mother-to-child transmission prevention (MTCTP) 37, 40, 76-7 public rollout in South Africa 378, 73, 108, 181 side effects 15, 143, 145, 169, 176 Bambanani Women: Long Life. Positive HIV Stories 163, 180-6, 207 Barnard, Hendrik Christoffel (‘Chris’) 153-6, 159 Bartel Arts Trust Centre (BAT) 82, 103-5

239

240 Index Barthes, Roland 114 Basson, Wouter 123 beadwork 79-81, 186n.4 red ribbon pins 70-1, 80-1 Beyond Awareness Campaign 38, 42 Biblionef 100n.6, 189n.6 body maps 181-3 Borrageiro, Benjamin 58, 59-64 Botha, Pieter Willem 109, 112 Bukhali, Johannes 58-60 Cameron, Edwin 10, 42 Witness to AIDS 163, 172, 174-80 cartoons 42, 47-50, 106-8 condoms 38, 40, 57, 103-5, 196-7 ABC slogan 108, 195 Cools, Kim 157 cultural studies 16-22 African cultural studies 17-18, 1920, 222 British cultural studies 19, 20, 222 relevance of intellectual research 5, 20, 221-2 representation 3, 21-2 Dalrymple, Lynn 8n.8 Dangor, Achmat 44 Dlamini, Gugu 85, 178, 209, 214 Dlamini-Zuma, Nkosazana 33 Dow, Unity 7 Drama in AIDS Education (DramAidE) 8n.8 Dubula, Vuyiseka 87 Duesberg, Peter 35n.4 Durban International AIDS Conference, 2000 1-3, 35, 69, 80, 87 ‘Breaking the Silence’ 2, 221 Durban Declaration 39 Nkosi Johnson 39 films 63-6, 69-72, 111-13, 141-2 Focus on the Family Africa 194-9 Foucault, Michel 27n.11, 168-9, 175 Gandhi, Leela 22-5, 222 Geffen, Nathan 87, 174, 178 Gilman, Sander 120, 124 Gordimer, Nadine: Telling Tales 43-4 Govender, Pregs 38

Gqibitole, Khaya: ‘Fresh Scars’ 50-1 Grossberg, Lawrence 16, 18, 20, 21-2, 222 Hall, Stuart 16, 19, 20-2, 122 Heywood, Mark 41n.7, 76n.5, 87 HIV (Human Immunodeficiency Virus) definition of 13-14 stigmatisation of ‘risk groups’ 12, 45, 57, 132-4, 209n.15, 220n.18 HIV/AIDS ‘African AIDS’ 6, 122-3 CD4+ cells 13, 14, 36n.5, 74-5, 90-1 compared to other infections and diseases 11, 13 disclosure 47n.8, 50-1, 53, 55, 71, 137, 176, 180, 183-4, 210, 212, 219, see also Gugu Dlamini history of 11, 12, 135 mandatory notification 32n.2 reasons for rapid spread in South Africa 3, 14, 32, 34 terminology 4, 12, 15, 166 theories on origin of 108, 121-4, 140n.9 xenophobia 114-15, 122, 124-32 HIV/AIDS statistics 29-32 access to antiretroviral treatment 30, 38, 73, 74-5 AIDS orphans 76 cause of death 30-1, 75 life expectancy 30 prevalence 29, 31, 105, 110-11, 173 spread in sub-Saharan Africa 2-3 Hofmeyr, Dianne: Blue Train to the Moon 202-6, 207, 210, 213 Homes for Kids in South Africa (HOKISA) 206n.14 Human Sciences Research Council (HSRC) 29, 31, 68-9, 103 It’s My Life 141-2 Iziko South African National Gallery 63, 69n.3, 78-9, 87 Jacobs, Rayda: Confessions of a Gambler 55-6, 167n.2 Jamal, Ashraf: ‘Milk Blue’ 55n.11

Index 241 Jehovah’s Witnesses 142n.10, 160 Kagiso HIV/AIDS Initiative Readers 200n.12 Keiskamma Art Project 186n.4 Khaba, Fana see McGregor, Liz: Khabzela Khan, Fiona: Hi! I am HIV Positive 97-100 Khanyile, Mboniseni 83-4 Khumalo, Nonkosi 87 Krog, Antjie 44 Kruger, Gavin and Val: A Story of Hope! 194-9, 201-2 Levin, Adam 179 AIDSAFARI 163, 165-74, 177, 178, 186, 203, 213 The Wonder Safaris 171 life writing definition of 163-5 fictional life narratives 203, 206 non-fictional life narratives 13762, 165-86 relevance in South Africa 164 Link, Jürgen 26-8, 67, 221 literature anthologies 43-4 novels 52-6, 93-5, 115-19, 124-34 play 54n.10, 211n.16 poem 44-7 short stories 50-1, 55n.11, 56-8, 117-19 teenage fiction 95-102, 190-220 writing as therapy 118-19, 207 see also life writing literary studies 26-8 aesthetics and form 26 literature as interdiscourse 26-7 Loomba, Ania 25-6 loveLife 8n.8 Madlala-Routledge, Nozizwe 38 Magona, Sindiwe 44 Beauty’s Gift 52-5, 167n.2 Vukani! (Wake Up!) 54n.10, 211n.16 Mahala, Siphiwo: When a Man Cries 54n.9 MAKE ART/ STOP AIDS 186n.4

Maluleke, Eddie Vulani: ‘Nobody Ever Said AIDS’ 44-7, 50, 111, 215 Mandela, Nelson 81, 209 lack of engagement with HIV/ AIDS 34, 109 public perception of 129-30 with t-shirt by Treatment Action Campaign 86 Mankahlana, Pakamile (‘Parks’) 47-9, 75, 215 Maqungo, Busiswe 112 Marchart, Oliver 18-19 Marechera, Dambudzo 44 Masuku, John 1, 2 Mazibuko, Nokuthula: In the Fast Lane 199-202, 204, 205, 206 Mbeki, Thabo attitude to antiretroviral treatment 35-7, 47, 149 distrust of orthodox HIV/AIDS science 4, 33-5, 62 questioning cause-of-death statistics 30-1, 75 McClintock, Anne 24 McGregor, Liz 138-9, 140, 143-4 Khabzela. The Life and Times of a South African 137-62, 173 Mda, Zakes: Ways of Dying 130 Médecins Sans Frontières (MSF) 86, 185 Medicines Control Council (MCC) 33, 136, 147, 154 memory books and boxes 180-1 Mendel, Gideon 87-90 metaphors as interdiscursive elements 91, 97, 99, 113, 156 conventional metaphors 91, 94, 102 dragon metaphor 100-2 journey metaphor 165, 171-2 second chance metaphor 170, 176, 180 struggle metaphor 19, 105-13, 222 war metaphors 13, 37, 54, 92-3, 93-100, 103-5, 156, 211 see also Susan Sontag Mhlophe, Gcina: Ithemba Means Hope 95-7, 98, 99

242 Index Moele, Kgebetli: The Book of the Dead 93-5 Mokaba, Peter 48-50, 75, 215 Moraka, Christopher 179 Morgan, Jonathan 105n.7 see also Bambanani Women Motsoaledi, Aaron 74, 86 Mpe, Phaswane 44, 47 Welcome to Our Hillbrow 7, 11519, 124-34, 207, 219 mural 103-5 Murray, Brett 72-3, 75, 78 National Association of People with AIDS (NAPWA) 39 National Youth Commission 110-11 National Youth Day, 16 June 50, 106, 111 Ndlela, Nosisa 58 Nkoli, Simon 178-9 Nkwanyana, Nombuso 83-4 Nzima, Sam 106-7, 110 Patton, Cindy 5, 122 photography 1-2, 58-64, 75-9, 87-90 Pieterson, Hector 106-8, 110 postcolonial studies 22-6 legacies of colonialism 23-4 role of literature 25 Rasebotsa, Nobantu: Nobody Ever Said AIDS 43-4 Rasnick, David 35n.4 Rath, Matthias 138n.8 red ribbon backlash against 68, 79, 84 history of 67-8 in South Africa 54, 68-85, 103, 197 prominence of 68-9 representation see cultural studies Reuter, Herman 185-6 Robson, Jenny: Praise Song 213-20 Samuelson, Meg: Nobody Ever Said AIDS 43-4 Sangoma see African healers Save Our Babies campaign 77 Seidman, Judy 58 Shapiro, Jonathan see Zapiro Siopis, Penny 75-9

Sontag, Susan critique of metaphors 11, 92-3, 99, 107, 222 racism and xenophobia 122, 1278, 132 South Africa constitution 172 history 22-3, 103, 106, 111-12, 127 language diversity 8, 103, 119 struggles against apartheid and HIV/AIDS 45, 50, 81, 105-6 see also Truth and Reconciliation Commission Soweto Day see National Youth Day Steinberg, Johnny: Three-Letter Plague 90-1 Steps for the Future Series 69, 111, 141 Stuurman, Tonye: ‘Everbody’s Got It, Don’t They?’ 56-8 Sunday Times campaign ‘Everybody Knows Someone’ 42 (non-)fiction awards 118, 139, 172 Takalani Sesame 42 telephone-wire basketry 79, 81-5 Thomas, Kylie: Nobody Ever Said AIDS 43-4 Tomaselli, Keyan 17-18, 19, 22, 37, 222 Toronto International AIDS Conference, 2006 1n.2, 36, 186n.4 Treatment Action Campaign (TAC) foundation of 39 legal action against government 40, 77, 109-10 legal action against Matthias Rath 138n.8 membership 87, 104n.7 objectives and strategies 39-40, 85-7, 90, 109, 145 public perception of 158-9 t-shirt as trademark 85-90, 113 see also Zackie Achmat Treichler, Paula 10, 221, 223 Truth and Reconciliation Commission 164n.1, 212 ubuntu 211-12

Index 243 Tshabalala-Msimang, Manto attitude to antiretroviral treatment 36 Dr Beetroot 36 promotion of healthy diet 36, 145 support for Africa’s Solution 154-5 Tutu, Desmond 164n.1 UNAIDS 1, 3, 29, 75-7 UNESCO 4n.3, 122 UNICEF: Sara – The Empty Compound 190-4, 200, 203-4, 215 Uys, Pieter-Dirk 42, 106, 109, 111, 166 van der Maas, Tine and Nelly 153, 154, 156-60 van Dijk, Lutz: Stronger than the Storm 206-13 van Kesteren, Geert 2, 88

Vera, Yvonne 47 Vink, Hijltje: Brenda Has a Dragon in Her Blood 100-2 virginity 210, 211 Visual AIDS 67-8 Weinberg, Paul 106 Williamson, Sue ‘A Few South Africans’ 63 ‘From the Inside’ 1, 58-64 Joubert Park Project 63-6 Wright, Handel Kashope 17-18, 20 World Health Organisation (WHO) 34, 35, 74, 135-6 Zapiro 42, 47-50, 106-8, 215 Zuma, Jacob disclosure of HIV status 42 National HIV Counselling and Testing Campaign 41-2, 104n.7 rape trial 40

‘An original and unique contribution to the field, one in which literature is connected to broader contexts read through a clear analytical framework, embedded in a keen sense of the history that underpins HIV/AIDS in South Africa. It brings a refreshing, enlightening and positive narrative to bear on one of the darkest moments of South African history.’ – Keyan Tomaselli, Director and Professor, Centre for Cultural and Media Studies, University of Natal, Durban, South Africa

Jacket illustrations Front: AIDS Mural at the Bartel Arts Trust Centre in Durban (Photograph © Ellen Grünkemeier, 2007) Front flap: Nombuso Nkwanyana, Imbenge ‘HIV AIDS IS A KILLER’ 2001 (Private collection; photograph by Dan Cole; by permission of Allen F. Roberts ) Back: ‘Eradicating a Statement’ (© Sue Williamson, Joubert Park Project, 2001)

JAMES CURREY an imprint of Boydell & Brewer Ltd PO Box 9, Woodbridge, Suffolk IP12 3DF (GB) and 668 Mt Hope Ave, Rochester NY 14620-2731 (US) www.boydellandbrewer.com www.jamescurrey.com