Death before Dying: Understanding AIDS Stigma in

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Death before Dying: Understanding AIDS Stigma in the South African Lowveld Isak Niehaus

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(School of Social Sciences, Brunel University) Version of record first published: 28 Nov 2007.

To cite this article: Isak Niehaus (2007): Death before Dying: Understanding AIDS Stigma in the South African Lowveld , Journal of Southern African Studies, 33:4, 845-860 To link to this article: http://dx.doi.org/10.1080/03057070701646944

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Journal of Southern African Studies, Volume 33, Number 4, December 2007

Death before Dying: Understanding AIDS Stigma in the South African Lowveld* Isak Niehaus

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(School of Social Sciences, Brunel University)

This article explores some of the social and cultural factors that have undermined effective treatment and care for persons living with AIDS in South Africa. Drawing on ethnographic fieldwork conducted in Bushbuckridge, I observe that AIDS stigma has been both pervasive and intense. However, contrary to conventional wisdom, I argue that the association of AIDS with sexual promiscuity has not been the major source of its stigma. Instead, I suggest that denial, silence, fear and fatalism have stemmed from the construction of persons living with AIDS as being ‘dead before dying’, and from their symbolic location in the anomalous domain betwixt-and-between life and death. This article also challenges the notion that older cultural practices in the folk domain impede an effective biomedical response to AIDS. I see the construction of persons with AIDS as ‘dead before dying’ as an outcome of the manner in which biomedical discourses have articulated with religious and popular ones. In this process the notion that AIDS is a fatal terminal illness carries as much symbolic weight as the popular association of persons suffering from AIDS with lepers and zombies.

Introduction When I visited Impalahoek – a village in the Bushbuckridge municipality of the South African lowveld – to conduct ethnographic research in 2003, my research assistant, Ace Ubisi, was extremely upset.1 Ace said that his friend, George Bila, had recently died from AIDS, and said that he was furious about the manner in which George had been treated by the local hospital and also by his own kin. George became ill during 1999, whilst he worked for a construction company in Gauteng, and returned home to his wife. But George’s parents accused her of witchcraft, and told George to live with them. When George became really ill he began to attend hospital, but the nurses tired of treating him and sent him home. George’s parents then brought him to live in a small room, outside their home. Some neighbours said that George had malaria: others that he had AIDS. Maybe George had both malaria and AIDS. He was very thin and he had black spots on his legs. After four months George could no longer walk. George lay on a mattress – not on a bed. He had diarrhoea and his family members no longer wanted to clean his shit. They would only enter the room once a day, hold their noses, and place one plate of food and one cup of water on the floor. I could hear George scream, pleading for water. His sister sometimes came from her own home to clean him and to bring him food. She said that even if her brother should die, he had to die peacefully – not like an animal. This is because George had paid for her education. Sometimes I became angry and took him water. Then his brothers opened the door so that I could talk to him. Because it stank like hell, I would stand outside. It even stank outside where I stood. * I wish to thank my informants, as well as my research assistants, Eliazaar Mohlala and Eric Thobela, for their help. I also acknowledge valuable comments by Cecil Helman, Adam Kuper, Jean La Fontaine, Conny Mathebula, Erik Seathre, Enos Sikauli, Jacqueline Solway and Jonathan Stadler. 1 I have used pseudonyms for my field site and all personal names in order to protect the identity of my informants. ISSN 0305-7070 print; 1465-3893 online/07/040845-16 q 2007 The Editorial Board of the Journal of Southern African Studies DOI: 10.1080/03057070701646944

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None of George’s friends came to his funeral. His parents did not want us to help with the arrangements. It seemed to us that his family wanted him to die early so that they could get his pension money.

Experiences such as those of George Bila are dramatic reminders of the pervasive failure of government, of the biomedical fraternity and also of kinship networks to render effective care for those suffering from AIDS-related diseases. The South African government’s response to the devastating AIDS pandemic in the country is widely recognised as one of denial and also as inadequate.2 President Thabo Mbeki has questioned the causal link between HIV and AIDS, and rejected data suggesting that AIDS is a major source of mortality.3 The government only agreed to make anti-retroviral drugs available through public health care facilities in 2004, after a humiliating series of confrontations with the Constitutional Court.4 But apart from vocal resistance by the urbanbased Treatment Action Campaign,5 the South African government’s AIDS policies have encountered little popular opposition. Instead, the pandemic has encountered stubborn silence and fatalism in village and township settings. People living with HIV are reluctant to come forward for voluntary counselling and testing, they seldom disclose their condition, and they often refuse anti-retroviral treatment. In a random survey of 2,500 residents in the mining town of Carltonville, respondents were offered a free and anonymous HIV test, but not one person accepted.6 Another study of 726 HIV-positive patients found that 92 per cent had not told anyone of their status.7 By 2006, 80 per cent of South Africans needing anti-retroviral drugs were not receiving them.8 Kin and neighbours have shunned, ostracised and abandoned persons living with AIDS.9 In one tragic episode during 1998, Gugu Dlamini, a young woman, was stoned to death in KwaZulu-Natal after she announced publicly that she was living with HIV. Her killers reportedly felt she had ‘shamed their community’. Social analysts have not adequately explained these responses of denial, silence, fear and stigma. A common assertion is that the negative cultural baggage of AIDS arises from processes of domination and exclusion. Richard Parker and Peter Aggleton, and Paul Farmer insist that in the United States and in Europe privileged social classes have associated AIDS with marginal outsiders such as intravenous drug-users, gay men, commercial sex workers, and immigrants from Haiti and Africa.10 This association is not only statistical it also reflects social prejudice against social groups. However, the local situation in South Africa is very different. There appears to be limited ‘othering’ in discourses about AIDS victims amongst

2 By 2007 21,333,490 South Africans had died of AIDS-related diseases, and another five-and-a-half-million were HIV positive. Plusnews. HIV/AIDS Barometer – May 2007, Mail and Guardian Online (May 2007), available at ,http://www.mg.co.za/articlePage.aspx?articleid ¼ 306829&area þ /insight/hiv-aids-barometer., retrieved on 20 July 2007. 3 T. Karon, ‘You Cannot Attribute Immune Deficiency Exclusively to a Virus’, Time, 11 September 2000. ‘Mbeki versus Leon: Dear Tony’, Sunday Times (South Africa), 9 July 2000. 4 S. Leclerc-Madlala, ‘Popular Responses to HIV/AIDS and Policy’, Journal of Southern African Studies, 31, 4 (December 2005), pp. 845–56. 5 S. Robins, ‘From Rights to Ritual: AIDS Activism and Treatment Testimonies in South Africa’, American Anthropologist, 108, 2 (June 2006), pp. 312–23. 6 A. Ashforth, ‘An Epidemic of Witchcraft? Implications of AIDS for the post-Apartheid State’, African Studies, 61, 1 (July 2002), pp. 1–21. 7 R. Pawinski and U. Lalloo, ‘Community Attitudes to HIV/AIDS’, South African Medical Journal, 91 (2001), p. 448. 8 ‘ARVs Vital in the Battle Against AIDS’, The Star, 4 September 2006. 9 N. Skhosana, Women, HIV/AIDS and Stigma: An Anthropological Study of Life in a Hospice (MA thesis, University of the Witwatersrand, 2001). J. Stein, ‘HIV/AIDS Stigma: The Latest Dirty Secret’, African Journal of AIDS Research, 2, 2 (2003), pp. 95–101. 10 R. Parker P. Aggleton, ‘HIV and AIDS-related Stigma and Discrimination: A Conceptual Framework and Implications for Action’, Social Science and Medicine, 57, 1 (July 2003), pp. 13 –24. P. Farmer, Pathologies of Power (Berkeley, University of Los Angeles Press, 2005), pp. 51– 90.


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black South Africans. In the country, HIV is mainly spread by heterosexual intercourse, and wealthier and poorer people have similar risks of infection.11 A more appropriate approach is to explore the meanings of AIDS. But even here conventional wisdom that AIDS is stigmatised due to its association with sexual promiscuity provides little insight. Debby Posel shows rather convincingly that President Mbeki’s denial of AIDS is partly a reaction to racist renditions of Africans as ‘promiscuous carriers of germs’, who display ‘uncontrollable devotion to the sin of lust’.12 However, this perception is more likely to account for AIDS denial amongst South Africa’s ruling elite, who attach greater weight to African nationalist concerns than do commoners.13 Ethnographic texts show ordinary South Africans to be fairly open about heterosexuality: condoning teenage sexual exploration, accepting illegitimate children, and not allowing adultery to cause too much disruption.14 Adam Ashforth writes that in Soweto, sexual licentiousness inspires little shame: After all there is hardly a family in the country that does not have children giving birth to children, sons being sought to support their offspring, or fathers finding lost progeny they secretly sired many years back. Sexual misdemeanours are shameful, sometimes, but commonplace, nonetheless.15

South African men often argue that they are naturally inclined and traditionally entitled to be polygamous.16 They also see their capacity to have multiple sexual liaisons as a sign of masculine success.17 Promiscuous women generally provoke greater frowns, although village and township residents acknowledge that in the context of grinding poverty women engage in ‘transactional’ sex in a desperate attempt to support themselves and their dependents.18 Moreover, sexual morality is of rather marginal concern in South Africa’s numerous Zionist and apostolic churches.19 11 See H. Deacon, Understanding AIDS Stigma: A Theoretical and Methodological Analysis (Cape Town, Human Sciences Research Council Press, 2005); and O. Shisana et al., Nelson Mandela/HSRC Study of HIV/AIDS (Cape Town, Human Sciences Research Council Press, 2002). 12 D. Posel, ‘Sex, Death and the Fate of the Nation: Reflections on the Politicization of Sexuality in Post-Apartheid South Africa’, Africa, 75, 2 (2005), pp. 125–53. 13 Mbali interprets the government’s AIDS denialism as a reaction to the colonial construction of Africans as having inherently diseased sexuality. She concurs with Stoler’s argument that European nations were differentiated from sexualised ‘others’ in the colonies. M. Mbali, ‘AIDS Discourses and the South African State: Government Denialism and Post-Apartheid Policy Making’, Transformations, 54 (2004), pp. 115 –16. A.L. Stoler, Race and the Education of Desire: Foucault’s History of Sexuality and the Colonial Order of Things (Durham NC, Duke University Press, 1995), pp. 134–355. 14 P. Delius and C. Glaser, ‘Sex, Disease and Stigma in South Africa: Historical Perspectives’, African Journal of AIDS Research, 4, 1 (2005), pp. 29–36. 15 Ashforth, ‘An Epidemic of Witchcraft’, p. 7. 16 A. Spiegel, ‘Polygyny as Myth: Towards Understanding Extramarital Relations in Lesotho’, in A. Spiegel and P. McAllister (eds), Tradition and Transition in Southern Africa (Johannesburg, Witwatersrand University Press, 1989), pp. 145–66. 17 See M. Hunter, ‘Cultural Politics and Masculinities: Multiple Partners in Historical Perspective in KwazuluNatal’, in G. Reid and L. Walker (eds), Men Behaving Differently: South African Men Since 1994 (Cape Town, Double Storey Books, 2005), pp. 139–60. The absence of stigma that adheres to masculine promiscuity is dramatically illustrated by public reactions during the rape trail of Jacob Zuma, South Africa’s former Deputy President. Zuma readily admitted to having engaged in unprotected extra-marital sex with an HIV-positive woman half his age. This happened whilst his daughter slept in the same home. Yet, according to one survey, 55 per cent of black respondents wanted Zuma to become South Africa’s next president. In a show of support, Senzeni Zokwana, president of the National Union of Mineworkers, said that his union ‘did not adhere to the Ten Commandments and did not need Christians to tell it that adultery was wrong’. See ‘Alliance Cracks Grow as Union Thrashes Call for a Woman President’, The Star, 25 May 2006. 18 J. Wojcicki, ‘“She Drank His Money”: Survival Sex and the Problem of Violence in Taverns in Gauteng Province, South Africa’, Medical Anthropology Quarterly, 16, 3 (2002), pp. 267– 93. 19 Garner argues that only Pentecostal churches significantly discourage pre- and extramarital sex among members. R. Garner, ‘Safe Sects? Dynamic Religion and AIDS in South Africa’, The Journal of Modern African Studies, 38, 1 (2000), pp. 41– 69.



This article suggests that the association of AIDS with death, rather than sexual promiscuity, is the main source of its stigma. In it I draw on the results of intermittent fieldwork that I have conducted in Impalahoek, a village of about 20,000 Northern Sotho and Tsonga inhabitants, since 1990. However, the information that I present derives primarily from openended interviews with 25 informants with whom I was particularly well acquainted; and from my personal experiences of assisting my terminally ill research assistant, Jimmy Mohale, who died in September 2005. Eighteen of my informants were men and seven were women. Their ages varied from 18 to 76 years, and they included unemployed persons, as well as builders and traders in the informal sector, teachers and other civil servants. I am therefore confident that the interviews captured a fairly broad range of opinions. My argument is not entirely novel. For example, A. Ashforth and F. Viljoen observe that residents of Hammanskraal and Soweto describe AIDS as a ‘waiting room for death’, and HIV-positive persons as ‘dead before dying’.20 But neither author develops these ideas. The theoretical starting point of my analysis is Robert Hertz’s classical observation that death is frequently conceptualised as a process in which the deceased is slowly transferred from the land of the living into the land of the dead, rather than as a single event. In this process, he argues, biological death that ends the human organism and a social death that extinguishes the person’s social identity need not coincide. Biological death usually precedes social death, and in the ambiguous state between these points, the deceased is in a kind of limbo and is potentially dangerous to others. This is particularly evident in Africa, where the dead person remains an omnipresent part of the lives of his or her kin, as an ancestor.21 There are also circumstances in which social death could precede biological death, for example, where persons are confined to institutions, such as hospices, for the rest of their lives.22 My analysis is also informed by Maurice Bloch’s theory that the emphasis on the precise moment when a person dies in western legal contexts is an expression of the bounded individuality of the person. Death is more likely to be viewed as a process in contexts where personhood is more diffuse and relationally constituted.23 I observe that persons with AIDS are symbolically located in an anomalous domain between life and death, and are literally seen as ‘corpses that live’ (setopo sa gopela) or as persons who are ‘dead before dying’. These conceptions and the fatalism they engender have severely undermined effective treatment and care. They are, nonetheless, an outcome of the manner in which biomedical and public health discourses themselves have presented AIDS as a terminal illness, and have articulated with popular conceptions of death in the folk domain. The biomedical meanings of AIDS have also been coloured by the representation of AIDS as a deadlier kind of leprosy in religious discourses, and by the identification of AIDS sufferers as zombies in discourses of witchcraft.

Constructing AIDS in Bushbuckridge During the era of apartheid, Impalahoek formed part of the Northern Sotho Bantustan, Lebowa, and households depended on wages earned by male labour migrants in South

20 Ashforth, ‘An Epidemic of Witchcraft’, p. 116. F. Viljoen, ‘Disclosing in the Age of AIDS: Confidentiality and Community in Conflict’, in F. Viljoen et al. (eds), Righting Stigma: Exploring a Rights-Based Approach to Addressing Stigma (Human Rights Research Unit, University of Pretoria, 2005), pp. 68–87. 21 R. Hertz, Death and the Right Hand (London, Cohen & West, 1960 [1907]). 22 C. Helman, Culture, Health and Illness, 4th edn (London, Heinemann, 2000). 23 M. Bloch, ‘Death and the Concept of a Person’, in C. Cederroth, C. Corlin and J. Lindstro¨m (eds), On the Meanings of Death: Essays on Mortuary Rituals and Eschatological Beliefs (Stockholm, Almquist & Wicksell International, 1988), pp. 54–83.


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Africa’s industrial and mining centres. After the country’s first democratic elections in 1994, Bushbuckridge was incorporated into the newly constituted province of Mpumalanga. But although more than a decade of democratic rule has passed, the area still displays many features of a ‘Native Reserve’, such as high levels of unemployment, morbidity and mortality; welfare dependency; and the importance of kinship as an idiom for social organisation. A verbal autopsy survey, conducted by epidemiological researchers on common signs and symptoms of deaths, shows that AIDS was responsible for a dramatic reversal in mortality rates in Bushbuckridge. Until 1995, infectious diseases and malnutrition were the predominant causes of death in children, accidents and violence in adolescents and young adults, and cardiovascular diseases in adults. But between then and 2002 AIDS was the predominant cause of death in all age groups, and affected nearly all families in Impalahoek.24 HIV was rapidly spread in the context of a migrant labour system that obliged spouses to live apart for extended periods of time, and contributed to the frailty of conjugal bonds. The economy of sex in Bushbuckridge was marked by multiple sexual partners in diverse relationships: ranging from romantic love affairs in school to monogamous and polygamous marriages, long-term extra-marital liaisons, male-to-male sex in prisons, and brief sexual encounters arranged in drinking taverns. In a context of structured gender inequality25 the transfer of bridewealth, gifts and money to affines, wives and lovers was a dominant theme in these relationships, and distributed resources towards the desperately poor. This is clearly borne out by details of 42 AIDS victims. The fifteen deceased men were amongst the ‘wealthier of the poor’ and had the capacity to sustain different sexual relationships. They worked as migrant labourers or were locally employed as teachers or policemen. By contrast, the 27 deceased women were unemployed and/or single and received income from their husbands or lovers. As elsewhere in South Africa, residents of Impalahoek saw AIDS as a highly stigmatised condition. Out of a total of 25 interviewees, 24 refrained from taking HIV tests, saying that knowledge of a positive result might cause them to die sooner from stress, make nurses gossip about their status, and provoke other villagers to discriminate against them. Close kin usually shielded terminally ill persons from public view and vehemently denied that they had AIDS. They often tried to deflect blame by claiming that the sick person had been bewitched. In this context, they mainly spoke about AIDS in backstage domains.26 But even here, villagers also used euphemisms to avoid mentioning the words ‘HIV’ and ‘AIDS’ directly. They would say that a person suffered from ‘germs’ (twatsˇi), the ‘virus of pain’ (kukoana hloko), the ‘three letters’ (maina a mararo), or ‘the fashionable disease’ (ke ko lwetsˇi bja gona bjalo). Other euphemisms were that a person ‘owned a House In Vereeniging’, ‘purchased a single ticket’ (in English), ‘was on diet’ (o ya dayeta), ate moragela kgole (herbs that chase people to leave home), or that ‘the dog had shat on its chain’ (mpsya a nyele ketane, and cannot be untied). These opinions and responses were not the simple result of ignorance. Instead, they seem to be an outcome of the manner in which medical, political and religious discourses have

24 From 1992 to ’95 to 1999 to 2002 deaths from AIDS, tuberculosis and diarrhoea in the village of Agincourt increased from 71 to 546. S. Tollman et al., ‘Reversal in Mortality Trends: Evidence from the Agincourt Field Site, South Africa, 1992–1995’, AIDS, 13, 9 (1999), p. 1,095. H. Saloojee and K. Kahn, ‘INDEPTH Verbal Autopsy Causes of Death MONOGRAPH: Data Template for Agincourt’ (July 2005) available at http://www. samclark.net/Files/Chapters/Samuel-Clark_INDEPTH-Agincourt-COD.pdf, retrieved on 20 June 2007. 25 Hunter found similar trends in the Mandeni municipality in Kwazulu Natal. M. Hunter, ‘The Materiality of Everyday Sex: Thinking Beyond Prostitution’, African Studies, 61, 1 (2002), pp. 99 –120. 26 J. Stadler, ‘The Young, the Rich, and the Beautiful: Secrecy, Suspicion and Discourses of AIDS in the South African Lowveld’, African Journal of AIDS Research, 2, 2 (2003), pp. 127 –39.



actively, but not always intentionally, constructed AIDS as a liminal condition between life and death. The scale and urgency of AIDS awareness vastly exceeded that of previous public health campaigns on malaria, tuberculosis and family planning. In their quest to stem the spread of HIV, non-governmental organisations singled out AIDS for propaganda: creating the impression that the condition was somehow deadlier than other diseases. The campaigns have also focused upon prevention rather than cure: creating the impression that because the disease is incurable, it is also untreatable and that little can be done to assist any person who is HIV-positive. These messages came too late, at a time when many villagers had already been infected or considered themselves to have been infected with the HI virus. In 1992, the Health Systems Development Unit (HSDU) and Acornhoek Reproductive Heath Groups Project launched sexual health programmes. Staff members gave talks on sexual hygiene to various constituencies, including police, clergy, headmen, diviners and youth at schools. The organisations also trained teachers as sex educators. At the same time, unpaid volunteers of the Bushbuckridge Social Service Consortium provided information and support to AIDS sufferers. In 2000, a LoveLife Youth Centre was built seven kilometres from Impalahoek. The Centre aimed to promote a lifestyle of global youth culture and a positive sexuality based on romantic love, being faithful, abstinence or using condoms. It hosted motivational workshops, dancing, studio broadcasting, computer training, drama, basketball and volleyball. A LoveLife youth told me that educators at the Youth Centre frequently deployed scary tactics. He recalled attending a workshop where the attendants were told that AIDS is incurable and shown a video-cassette of Ethiopians dying of AIDS-related diseases. The only message they received about treatment was that those who ate fruit and vegetables might prolong their lives. A former goundBREAKER (the preferred spelling) of the same organisation offered the following telling criticisms of their campaigns: I worked at LoveLife because I wanted a job and I only did what I was told. I had to tell people, ‘AIDS kills! Use condoms!’ . . . We only talked about prevention. We said AIDS was incurable. That is why we must prevent it. We never told people what to do [when they were infected]. People who go around with the awareness put a bad stigma on AIDS. They will say that AIDS kills. I think that every disease kills: also high blood, sugar diabetes and TB.27 Why don’t they do blood pressure awareness? People have guns and guns kill. They don’t have gun awareness. Guns are meant to kill.

AIDS awareness has also become an important part in the curriculum of ‘life orientation’ classes in all local schools.28 Each quarter, teachers at Impalahoek Primary divided the learners into three groups for AIDS awareness classes: children between eight and twelve, and boys and girls older than twelve. Teachers did not mention sex to the younger learners, but warned them not to play with scissors, razors and pins; not to touch bleeding friends; and also not to inflate any balloons (condoms) they found lying around the village. (These lessons actually propagate miasmic theories of contagion.) Teachers teach the older learners the ABC – to Abstain, Be faithful and Condomise – and demonstrated safe sex with stage props such as artificial penises and different kinds of condoms. AIDS activists targeted High School learners for even more excessive propaganda and addressed them as often as twice a week. The instructions were mainly about condoms, but sometimes also mentioned the benefits of

27 In citing these comments I do not endorse the view that deadly routine infections such as tuberculosis are separable from AIDS. Saloojee et al. report that tuberculosis accounted for 26 per cent of the immediate causes of AIDS deaths in the Agincourt survey. See Saloojee and Kahn, ‘INDEPTH Verbal Autopsy Causes of Death MONOGRAPH’, p. 10. 28 M. Gallant and E. Maticka-Tyndale, ‘School-Based HIV Prevention Programmes for African Youth’, Social Science and Medicine, 58 (2004), pp. 1,337–51.


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voluntary counselling and testing, medication and a healthy diet. Far from being untouched, my younger informants were over-saturated by these messages.29 Despite great publicity about safe sex, medical treatment for people with AIDS has remained woefully inadequate. A network of three hospitals and six clinics screened pregnant women for sero-prevalence and provided voluntary counselling and testing on request. But only in 2003 did the Masana hospital (about 30 km away) start making the drug Nevirapine available to AIDS-sufferers. In 2005, HIV and TB clinics providing outpatient services were established at the Tintswalo hospital (within walking distance). Here, a support group called Rixile (‘the rising sun’) assisted patients in applying for social grants of 780 rand per month. Political and religious discourses about AIDS were as prominent as medical ones. Villagers frequently blamed powerful outsiders for creating and spreading HIV. These included Dr Wouter Basson, former head of the apartheid government’s chemical weapons programme, and Americans who allegedly manufactured the virus; white farmers who distributed HIV-infected sweet potatoes and oranges; and funeral undertakers and corrupt government officials who blocked the AIDS cure. Within the domestic domain, women accused men of purposefully infecting others with the virus.30 At the same time, ministers of the numerous Zionist and apostolic churches in Impalahoek portrayed the AIDS pandemic as divine retribution for sin: not only for individuals having unprotected sex, but rather for a world that has gone morally astray. The ministers pointed to gay marriages, children disrespecting their parents, legalised abortions, utterly corrupt politicians, and also the high incidence of theft, rape and murder. The churches frequently constructed AIDS as a new kind of leprosy.31 A few of my informants identified AIDS itself, or the skin lesions of persons with AIDS, as leprosy. Others merely posited a metaphorical relationship between these conditions, by saying that AIDS was like leprosy. Although isolated cases of leprosy did occur in Bushbuckridge until the 1970s, few villagers were acquainted with their details. They nonetheless saw leprosy as a most contagious illness and portrayed lepers as horribly deformed and maximally ravaged persons, whose flesh literally rotted away whilst they were still alive. This trope clearly derives from biblical mythology, rather than from an accurate assessment of clinical conditions.32 There are several overlapping meanings between AIDS and biblical leprosy. In local religious discourses both conditions are expressions of God’s wrath. In the Bible, leprosy

29 A survey of medical anthropology students at the University of Cape Town interviewed 480 young adults. Their most striking finding was that their interviewees were ‘sick and tired of hearing about AIDS’. Discourses about the disease were usually couched in terms of debates about safe sex. S. Levine and F. Ross, ‘Perceptions of Attitudes to HIV/AIDS among Young Adults in Cape Town’, Social Dynamics, 28, 1 (2002), pp. 89–108. 30 I. Niehaus with G. Jonsson, ‘Dr. Wouter Basson, Americans and Wild Beasts: Men’s Conspiracy Theories of HIV/AIDS in the South African Lowveld’, Medical Anthropology, 24, 2 (2005), pp. 179– 208. 31 In colonial Africa, Christian mission societies took responsibility for the treatment of lepers and projected powerful disease symbols onto Africa. Leper settlements were places of isolation in which the Christian message was presented as the only sign of hope. M. Vaughan, Curing their Ills: Colonial Power and African Illness (Stanford CA, Stanford University Press, 1991), pp. 77 –99. Also see Harriet Deacon’s work on the historical use of Robben Island as a leprosarium and Silla’s analysis of how leprosy sufferers became social outcasts in Mali. H. Deacon, ‘Patterns of Exclusion on Robben Island, 1654–1992’, in C. Strange and A. Bashforth (eds), Isolation: Places and Practices of Exclusion (London, Routledge, 2003). E. Silla. People are not the Same: Leprosy and Insanity in Twentieth-Century Mali (Portsmouth, NH, Heinemann, 1998). 32 Clinically, leprosy, or Hansen’s disease, is much more benign, curable and less infectious than popular images thereof suggest. Leprosy is a chronic disease of the skin, eyes, internal organs, peripheral nerves and mucous membranes. It seldom produces severe disfigurement, and multi-layered drug therapy can render a patient infection-free within six months. Leprosy is amongst the least contagious of human pathogens. R. Barrett, ‘SelfMortification and the Stigma of Leprosy in Northern India’, Medical Anthropology Quarterly, 19, 2 (2005), p. 217.



(zara’at in Hebrew) is frequently portrayed as a plague, sent by God as punishment for sin. Like persons with AIDS, lepers bore an anomalous mixture of living and dead tissue, and were deemed to have died a social death, although they were actually still physically alive.33 Gilbert Lewis writes that in the Old Testament the leper was tainted with death, and ‘carried in his person a defiling taint which excluded him absolutely with any contact with holy things, even contact with clean people, even contact with the community’.34 Both conditions were also deemed to be highly contagious. In a similar manner to that in which families confined those with AIDS in-doors, lepers were confined to leprosaria.35 But villagers recognised AIDS as being deadlier than leprosy. Christians cited many biblical passages, showing how God and Jesus had cured lepers. By contrast, they saw AIDS as terminal. Another difference was that, initially, the symptoms of AIDS were invisible. This provided little comfort. In villages where the secret powers of witchcraft were a standardised nightmare, the concealed inspires greater fear than the transparent.

The Sexual Hypothesis Village residents clearly recognised sexual promiscuity as a route for the transmission of the HIV. An elderly woman explained, ‘In the past we married, but today the youth have lost their morals. They ignore taboos and screw about. This is why they are dying like ants.’ Some Tsonga euphemisms for AIDS, such as sephamula (‘open up’), and phamukati (‘lie down’), also explicitly refer to women’s positions during sexual intercourse. But the recognition that husbands might infect their faithful wives, and that mothers might transmit HIV to their babies, and miasmic theories of contagion, weakened the link between sexual promiscuity and AIDS. During this research, sex was widely recognised as a source of power that embodied contrary moral potentials.36 On the one hand, villagers perceived sex as a means for procreation, pleasure and maintaining good health.37 They suggested that heterosexual intercourse ensured a healthy, balanced mixture of blood: in the sex act, a man first injected semen (known as white blood), and then absorbed the woman’s vaginal fluids (also blood). Getting married and bearing children were ideal attributes of adult personhood, and men took pride in having multiple lovers. As such, celibacy and singleness were deemed to be more dishonourable than promiscuity. Elderly informants told me that in the past kin would show their discontent to a man who had died without leaving any progeny by shoving a burning log into the anus of his corpse. Villagers were also extremely suspicious of adult male bachelors (kgope or lefetwa) who lived alone. Prolonged celibacy was said to cause poorly regulated bodily fluids, short temper, recklessness and depression. On the other hand, villagers acknowledged that sex could also be a source of danger and immorality. There was a fairly elaborate vocabulary of sexually transmitted diseases. Sex between spouses or regular lovers, who were immune to each other, was generally deemed safe because their bodies regularly exchanged sweat, blood, odours and aura (seriti). But in 33 See M. Douglas, ‘Witchcraft and Leprosy: Two Strategies of Exclusion’, Man, 26, 4 (1991), pp. 723 –36. 34 G. Lewis, ‘A Lesson from Leviticus: Leprosy’, Man, 22, 4 (1987), pp. 593–612. 35 In Cuba and in Guantanamo Bay, quarantine was, indeed, adopted as a solution for AIDS. See H. Hansen and N.E. Groce, ‘From Quarantine to Condoms: Shifting Policies and Problems of HIV Control in Cuba’, Medical Anthropology, 119 (2001), pp. 259 –292; and Farmer, Pathologies of Power, pp. 51–90. 36 S. Heald, ‘The Power of Sex: Some Reflections on the Caldwells’ African Sexuality Thesis’, Africa, 65, 4 (1995), pp. 489 –505. 37 T. Collins and J. Stadler, ‘Love, Passion and Play: Sexual Meanings amongst Youth in the Northern Province of South Africa’, Journal des Anthropologues, 82, 83 (2000), pp. 325– 37.


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the case of incest, where patrilineal kin were of the same blood, there could be no mingling, as this could result in the birth of crippled or mentally retarded babies. Inauspicious sex could bring about an excessive mixture of substances. If a woman had made love to several men, her lovers would absorb substances from each other’s bodies, via her. Should any man whom had been polluted in this manner come into contact with children, they could contract an affliction called makgoma, and experience convulsions and shortness of breath. The most commonly recognised sexually transmitted diseases are gonorrhoea (toropo), syphilis (leshofela) and afflictions that arise from sexual intercourse between men and women who are pregnant, have recently aborted, or have recently been widowed. According to local belief, such women are in a dangerous state of heat ( fisˇa). The bodies of pregnant women form a duality between mother and child; and those of women who have aborted and of widows are still contaminated by the aura of the dead baby or deceased husband. Sexual intercourse with such women allegedly cause a man to ‘shudder’ (lesˇisˇi’). The women’s heat might cause a man’s entire body to swell up and his groin to ache so badly that he might be unable to walk. In the case of abortion, a man’s blood would be poisoned; he would be unable to urinate, and he would sweat profusely and cough severely. It seems highly implausible that the association with immoral and dangerous forms of sexual intercourse could explain the horrible stigma of AIDS. Residents of Bushbuckridge recognised masturbation and homosexuality as highly immoral kinds of sexual activity,38 but they did not view these as routes for transmitting HIV. Contrary to medical knowledge, a former mineworker told me that many of his peers engaged in male-to-male sex on the compounds because they perceived it to be hygienic. I have personally asked the elderly men why they prefer [to have sex with] boys. They tell me that women bite. They say that a woman can make you ill and give you STDs [sexually transmitted diseases]. You can even die if she has committed an abortion. With women there is also AIDS. They say it is safe with a young boy. He won’t transfer any diseases to you.39

Young women who subvert the authority of their parents by freely engaging in sex were more likely to be labelled as promiscuous. Yet health workers report that women felt far less reluctant than men to take tests for HIV antibodies, to undergo voluntary counselling and to join support groups for persons living with AIDS at the local hospitals. Moreover, the sexual route of transmission does not, in itself, explain people’s reluctance to speak about AIDS. Admittedly, it is true that talk of sex was proscribed. Elders, particularly parents, were prohibited from speaking directly to younger people about sex, and vice versa. Notable exceptions were the mother’s brother, father’s younger siblings, who could speak to youngsters about sex in a pedagogical manner. Grandparents also joked with grandchildren about sex. But such joking was not reciprocal. In these forms of talk, sex was referred to indirectly, by euphemisms such as to ‘share a blanket’ (ke lepai re ya apolelana), ‘penetrate’ (tobetsa), ‘taste’ (kwa), ‘perform’ (maka) or ‘sleep’ (robala). But one could freely speak about sex to spouses, lovers, coevals, friends, and also to outsiders such as anthropologists. Moreover, cousins shared a reciprocal joking relationship, in which they frequently shared lewd sexual jokes. In this respect, AIDS differed significantly from other sexually transmitted diseases. Men freely told me about their personal experiences of gonorrhoea, syphilis and lesˇisˇi. They said that any husband who had contracted such a disease was expected to tell his wife, so that together they could consult diviners to seek a cure. But in the case of lesˇisˇi, which was 38 I. Niehaus, ‘Perversions of Power: Witchcraft and the Sexuality of Evil in the South African Lowveld’, Journal of Religion in Africa, 32, 3 (2002), pp. 1–31. 39 I. Niehaus, ‘Renegotiating Masculinity in the South African Lowveld: Narratives of Male-Male Sex in Labour Compounds and in Prisons’, African Studies, 61, 1 (2002), pp. 77–98.



potentially fatal, a man should also inform his uncles and aunts. As one man explained, ‘If you do not speak out you might breathe your last breath.’ Women tend to perceive sexually transmitted diseases as more shameful than men do, although according to a local teacher, women too have begun to now speak about them. The key difference that accounts for the silence surrounding AIDS was its terminal nature. People were confident that diviners and medical doctors could easily cure other sexually transmitted diseases and afflictions. The Sotho-speaking Malopo spirits, who possessed local diviners, were believed to confer special powers of diagnosing and treating gonorrhoea, syphilis and lesˇisˇi. By boiling tree roots in water, and using this concoction to purify the blood of their clients, diviners could heal these diseases in a matter of two or three days. Diviners could treat lesˇisˇi with herbal concoctions; place a clay pot containing glowing embers on the client’s head: and administer enemas to make him discharge thick blood.

The Stigma of Living Corpses The association of AIDS with dying and with death is a more likely source of its stigma, and illuminates many aspects of people’s responses to AIDS. In interviews, my informants explicitly stated that their fears of undertaking HIV tests stemmed from the possibility of discovering that they had been afflicted with a fatal and untreatable disease. Most men said knowledge of being HIV-positive would hasten rather than delay their deaths. I don’t want to suffer. I don’t want to be rude. If you test HIV-positive you will lose your memory, thinking all the time about death and dying. People will not gossip about you because you screw, but because you are dead. They will take you as dead. They will take you as a living corpse. We blacks are brought up to believe that death is a terrible tragedy. If they tell me that I am HIVpositive I’ll think of dying. I’ll automatically think that I’m dead. I will see death in my mind and I will dream of a grave. Because people fear death so much they would not want to talk to me or even come close to me.

In certain respects, villagers saw persons living with HIV and/or AIDS as being in a very similar position to those dying from any other terminal illness. They described terminally ill persons as ‘noisy ancestors’ (bakwale badimo), who were socially dead yet still physically alive. Local perceptions of treating terminally ill persons, death and bereavement have shaped people’s responses to HIV and AIDS. Since the late 1960s these processes have become more ritualised and dramatic. Until then, villagers usually buried corpses inside the yard on the very same evening as death, and only close adult relatives attended the burial. But the establishment of mortuaries and public graveyards have enabled families to host ostentatious funerals on Saturdays, often drawing an attendance of more than 500 people. Terminally ill persons were invariably secluded from fellow villagers. This practice was observed with such regularity that one middle-aged informant told me he had never seen a dying person. ‘They always hide them away.’ Only a select few people were allowed to nurse them. Traditionally a young man was nursed by his father, a young woman by her mother, a married person by his or her spouse, a widower by his brother or younger paternal uncle, and a widow by her sister or younger maternal aunt. However, due to the vagaries of labour migrancy and marital breakdown, it was usually mothers who washed, fed and cared for the sick. The proverb, ‘The child’s mother holds the knife by its sharp end’ (Mmago ngwana o swara tipa ba bogale), alludes to the hardships mothers were prepared to undergo


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to protect their children. Primary caregivers had to comfort and strengthen ( phorola) the sick person verbally. Even if the situation was gravely serious, one should never name the person’s disease; say that he or she is about to die; or speak about topics that might upset him or her. A constantly burning fire in the yard indicated sickness in a household. Nobody could enter the sick person’s room without the primary caregiver’s permission: especially not those polluted by birth, sex and death. People who had come from diviners or from church were also prohibited from entering because their prescriptions might counteract the sick person’s medicines. Relatives and neighbours were, nonetheless, welcome to visit the household, fetch water for them, and donate food for the sick person. But whereas terminally ill persons were seen as vulnerable, corpses were seen as dangerous and polluting. Upon death, the breath (moya) and aura (seriti, literally ‘shadow’) of a deceased person separated from his or her corporeal body (mmele). The aura emanating from a corpse assumed a dark, sorrowful form called thefifi, which could pollute any object, item or person with which it came into contact. Villagers believed that a deceased person’s clothes and utensils literally ‘had his body’ (O na le mmele ya ka).40 During funerals people took great care to avoid contamination. Kin immediately took the corpse to the mortuary, where they thoroughly washed and cleansed it. The bereaved family then observed a week-long period of mourning. They pitched a large tent in the yard, and the entire household slept outside their home to show grief. Members of the bereaved family observed various prohibitions. They abstained from sexual intercourse, stopped working in the fields, and refrained from touching children. If a member of the family was not at home during the time of death, he/she should enter through the main gate facing backwards, and drink water from a wooden spoon. Visitors were not allowed to take anything from the homes of bereaved families. Each evening before sunset neighbours and friends visited and consoled the bereaved family. Late on the Friday afternoon people fetched the corpse from the mortuary and placed it inside the home of the bereaved family. Here widows – who had previously been exposed to the dangers of death – prepared the corpse a final time. To minimise its heat they sprinkled ash on all windows. Because ash is the residue left when the flames of a fire have departed, it is seen as the opposite of heat, and is used as a cooling agent.41 A vigil was then held throughout the night. On the Saturday morning a funeral service was conducted at the home of the bereaved family and a hearse then transported the coffin to the graveyard. Young men usually placed items such as blankets, walking sticks, cups and plates, which had been polluted by the aura of the deceased, in the grave. Throughout the proceedings the widow’s head was covered with a blanket. A burial society then served all attendants with food at the home of the deceased. At the gate, men sprinkled everyone who entered the yard with water – both on their front and back – to cool them. After the meal, women thoroughly cleansed all utensils of the deceased. To remove all misfortune from the home, Zionist ministers sprinkled all members of the bereaved family with holy water, and cleansed the yard and all rooms with a mixture of water,

40 Villagers believed that, like one’s conscience, the thefifi of a murdered person could haunt a murderer and force him to confess. This condition closely resembled the well-known case of nueer amongst the Nuer of Southern Sudan, where the murderer had a mystical bond with the victim and was so polluted that only a leopard-skin priest could cure him through blood-letting. S. Hutchinson, ‘Death, Memory and the Politics of Legitimation: Nuer Experiences of the Continuing Sudanese Civil War’, in R. Werbner (ed.), Memory and the Postcolony: African Anthropology and the Critique of Power (London, Zed Books, 1998), pp. 58 –70. 41 W.D. Hammond-Tooke, Boundaries and Belief: The Structure of a Sotho Worldview (Johannesburg, Witwatersrand University Press, 1981), p. 145.



milk, ash and salt. This was done to ‘tie the spirit’ (hlema moya) of the deceased. But widows were still perceived as polluting and had to observe a year-long mourning period. To immunise children against their heat, they were cleansed with paraffin. Without this they might develop the affliction, mafulara, marked by profuse coughing. Throughout the funeral mourners were prohibited from speaking ill of the deceased, and pastors have even been known to describe gangsters as honourable church-goers. Nobody could refer directly to death but had to signify it by non-verbal means. For example, when a young man died during initiation the master of the lodge would break a clay pot in front of his mother.42 Symbolic inversions, such as turning around logs in a fire and placing their thick ends in the centre, also signify death. Common euphemisms for death were that the deceased had been ‘taken by a hyena’ (tsˇerwe ke phiri); ‘gone to the place of the ancestors’ (o ile badimong); that the widow’s ‘house has fallen’ (o wetsˇe ke ntlo), the ‘water had dried up’ (meetse a pshele), or the ‘sun had set’ (dikeletswe ke letsˇatsi). This resonated with the manner in which villagers avoided making direct reference to AIDS. One of the most striking aspects of people’s attitudes was their intense unease with – one can even say abhorrence of – a ‘living corpse’ (setopo sa gopela). Nearly all my informants said that they felt less disturbed by a corpse. Many had been called upon to identify the corpses of relatives at the mortuary, or had viewed corpses at night vigils. However, a dying person, although vulnerable, was anomalous – existing between the categories of life and death – and contradicted normal schemes of classification.43 Living corpses were also described as burdensome and pitiful. As one man explained: I can tolerate a corpse, but not a person who is dying. When I look at such a person his agony will be transferred to me and I will feel his pain. I will be traumatised. I will also think about those who have to care for me when I’m in such a situation.

Elderly informants reminded me that euthanasia was fairly common in the past. Initiation masters reportedly ate tortoise hearts to ensure longevity. Even though the initiation master’s brain might be dead and his body rotting, his heart would continue beating. To relieve him (and also others) of pain, relatives would wrap his body in blankets, place it at the entrance of the cattle kraal and drive the herd of cattle over him. Other means of euthanasia included placing tsˇhipi herbs underneath the pillows of dying persons, making them inhale fofotsa (also used to terminate the life of sick animals), or treating them with a mixture of fig and python-tail fat.44 But there was also a disjuncture between AIDS and other terminal illnesses. AIDS seems to be marked by a peculiar compression of time, and the symbolic load of labelling seems so overpowering that it immediately signifies death. The very gradual progression from infection to illness to death that so frequently characterises this condition does not seem to be culturally elaborated. Even the newly infected person is ‘tainted with death’. Moreover, my informants portrayed persons living with HIV or AIDS as being exceptionally dangerous to others. Much like biblical leprosy, my informants described AIDS as an anomalous mixture of living and dead flesh, and said that the bodies of persons with AIDS literally decomposed whilst they were still alive. 42 De Heusch shows that Tsonga people draw an analogy between births, and the baking and firing of clay pots. L. de Heusch, ‘Heat, Physiology, and Cosmogony: Rites de Passage among the Thonga’, in I. Karp and C.S. Bird (eds), Explorations in African Systems of Thought (Bloomington, Indiana University Press, 1980), pp. 53 –76. 43 See M. Douglas, Purity and Danger (Harmondsworth, Penguin, 1970 [1966]). 44 E.J. Krige and J. Krige write that in the northern parts of the Lowveld, rulers ‘were not allowed to become old or decrepit, lest their kingdom suffer; and either they committed suicide or they were killed’. They observe that among the Lobedu ‘tradition decrees that the queen shall have no physical defect and must poison herself’. E.J. Krige and J. Krige, The Realm of a Rain Queen (London, Oxford University Press, 1965 [1943]), pp. 165–6.

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In the final stages AIDS is so dangerous. It is as if your flesh dies, whilst your body is still alive. Your flesh will just fall off and the bones remain. It is also as if there is no blood in your body.

In this respect, the skin lesions or ‘black spotted marks’ of persons in the later stages of AIDS were the clearest indices of death. But there were also other indices such as persistent diarrhoea, constant vomiting and coughing from tuberculosis, which indicated the loss of breath, aura and life. Persons with AIDS were also said to develop swollen glands, mouth sores and soft fluffy hair. Moreover, informants observed that the sick person became darker in colour, showing the loss or rotting of blood. Drastic slimming and boniness too were reminiscent of a corpse. My informants also spoke of the progressive loss of body functions and of reason. I visited my former field assistant, Jimmy Mohale, only two weeks before his death. Jimmy suffered badly from tuberculosis, but explained to me that his paternal relatives had bewitched him. He nonetheless complained of feeling cold, powerless and paralysed; and also of the inability to breathe, walk or see properly. The Jimmy that you did research with had only half a life. This life came from my maternal family. I only have ancestors on my maternal side. I am dead on my paternal side . . . People around here know me as being dead. That is why I don’t have to be seen. You are speaking to a dead person.

Some of Jimmy’s friends suspected that he had died from AIDS-related sicknesses. They observed that he had become extremely thin: that the texture of his skin changed; the right side of his face became swollen; and that his hair became patchy, greyish and straight.45 I wanted to visit Jimmy, but his brother told me not to enter his room because I would not be able to tolerate looking at him. We heard rumours everywhere that Jimmy was dead. One can say that he died before the actual death.

Villagers generally over-estimated the contagiousness of AIDS. Hardly anyone trusted the biomedical pronouncement that HIV could only be transmitted through sexual intercourse. In local belief, one could also contract the virus by sharing a toilet or cutlery, nursing a sick person without using latex gloves, coming into contact with his or her germs, blood and even breath. An archetypical story was of an elderly woman who had nursed her sick daughter, and then died of similar symptoms, seven years later. Moreover, people dreaded the possibility that HIV-positive persons might intentionally set out to infect others. This alludes to fears of the pollution of death, and to the manner in which AIDS violates the integrity of the body’s boundaries. These perceptions underlay excessive avoidance behaviour. Teachers informed me that pupils often refused to play with the children of AIDS victims at school. Doris Ubisi, a young woman, greeted her friends by hugging them. But one of them turned and walked away. She had apparently heard that Doris was HIV-positive. Moreover, people tended to avoid using any of the same utensils as persons with AIDS. A cup could, for instance, be affected through germs from the ill person’s mouth sores. Funeral parlours sometimes wrapped the corpses of AIDS victims in plastic bags, and warned family members not to open these, nor to prepare the corpses. Men were also known to have burnt the clothes they inherited from AIDS victims. Kin took extreme care to seclude persons with AIDS. This was done as much to protect the sick person from others, as to protect them from him or her. A teacher frequently tried to visit the terminally ill sister of a colleague, but was always told that she had been taken to relatives elsewhere. ‘Meanwhile, she was right there in the house.’ Isolation was also

45 The emphasis on the loss of hair is significant. A haircut accompanies rites of transition, including funerals. A corpse’s hair is shaven and placed alongside him or her, inside the coffin.



self-imposed. Whilst I visited Michael Ngoni we heard Christian songs faintly being sung in the house next door. Lewis told me that his neighbour had AIDS, hardly ever ventured outdoors, and would not open the door, even if one knocked. Her husband and daughter had both deserted her, claiming that she was insane, and only her mother visited. Only late in the course of the sickness did patients and their carers visit medical practitioners. Persons with AIDS were seldom hospitalised for more than a few weeks, and mainly used clinical services on an outpatient basis. Therapeutic consultations were often secretive. Lakios Rampiri, who worked as a telephone exchange operator at the nearest hospital, recalled that his neighbours woke him very late one evening, and asked him to take their sister to the outpatients’ department by car. They covered the sick woman’s head with a blanket, as if she were a widow at a funeral. Caregivers were extremely scared of contaminating exposure. Mothers, maternal aunts or siblings usually nursed the sick, but sometimes delegated these tasks to young people such as nephews or cousins. Givens Thobela took almost two years off from school to assist his frail grandmother in caring for his maternal uncle. Givens fed and cleansed him and, because his uncle was lame, Givens had to push him in a wheelbarrow to the nearest clinic, a kilometre away. Neighbours gossiped that Givens had contracted AIDS, and he asked a nurse to explain to them that she had issued him with latex gloves. Joe Ngobeni told me that his uncle, Daniel, who was a medical doctor, asked him and his wife to look after Tsepo. (Tsepo’s parents both died from AIDS-related diseases.) Daniel only told them that Tsepo had tuberculosis, and promised to provide them with medication and food, and to pay them R400 each month. However, Joe suspected that his cousin actually had AIDS. Each day at 5 [am] I had to give Tsepo five different tablets. Daniel did not tell me what they [the tablets] were for, but I saw ‘ART’ and ‘VIRUS GUARD’ written on the labels. I became so scared. I took the tablets to the doctor and the nurses at the HIV clinic and asked them what they were for. They also did not tell me, but asked me to bring Tsepo for a blood test. Then, they said, they could write a letter to the social workers so that he could get a pension. I was very scared. I thought that maybe I was also HIV-positive. I asked Daniel if I would be infected if Tsepo were HIV-positive. But he said that I would be okay if I didn’t have wounds and our blood did not mix. A nurse came to show us how to wash Tsepo and church-goers came to pray for him. Tsepo was very thin, his mouth was bleeding and he had diarrhoea all the time. If he slept on his left side we had to turn him around. We also had to feed him with our own hands. Tsepo used to shit like hell and we could only clean him when he was naked and wore no underwear. He was a living corpse. We sometimes thought he was dead when he slept. His mouth and eyes would be open. His ankles also straightened so his legs became like sticks. He was losing skin because he scratched himself so much. Some weeks he would only wake up for a few minutes. When you spoke to him you felt as if you were irritating him.

Joe told me that, although his cousin had died more than three months ago, these memories still haunted him. Poverty and intra-household conflict severely undermined the quality of palliative care. This was evident in the case of Moses Nyathi, who had lived alone since his wife’s death in 1999. Moses worked at a local game lodge, but was dismissed for constant drunkenness at work. Hereafter, Moses sold his home and moved into a small RDP (Reconstruction and Development Programme) home, where he earned a living by repairing shoes. Moses became seriously ill and was treated at the hospital’s sub-acute ward for TB patients. After neighbours complained of the stench at his home, police broke open the door, and found that Moses had been dead for five days. Patients and their carers utilised the services of diviners and of Christian healers, especially when they suspected witchcraft that, like AIDS, did not seem amenable to clinical medicine. They sometimes interpreted the very same symptoms that others constructed as evidence of AIDS as signs that witches were trying to capture the sick person. The carers


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alleged that witches first took hold of the victim’s aura and then of different parts of his or her body, until they possessed the entire person. However, witches deceived the victim’s kin by leaving a lifeless image of him or her behind. The kin, believing that the victim was dead, bury what they assumed to be his or her body, but which was instead the stem of a fern tree that had merely been given the victim’s image. Meanwhile, at home, witches transformed their victims into zombies (ditlotlwane).46 They allegedly hid their zombies during the daytime, but employed them at night to perform the mindless tasks of domestic servants and unskilled labourers. This alternative construction deflected blame from the ill person and also created a measure of hope that he or she might still live. For example, when Sipho Mbolwane became bed-ridden from sickness, a diviner told his kin that witches had captured parts of his body. The diviner rubbed an ointment into Sipho’s skin to make him invisible to the witches at night, and brought him to an empty riverbed. Here the diviner tried to retrieve Sipho’s aura (seriti) from the witches, by beating dingomane drums for his ancestors, blowing a rhebuck horn and calling out his name. Sipho’s kin were hopeful that he would survive, but he passed away only one week later. It is significant that in this construction the seriously ill person is portrayed as a zombie who also exists in the liminal state between life and death, partially stuck in a hidden parallel world. At the funerals of those who had died of AIDS, kin seldom announced the cause of death. They often held the funeral service early in the morning, even before sunrise, making it impossible for many mourners to attend.

Conclusions Quentin Gausset observes that throughout the history of AIDS in Africa social scientists have attributed the rapid spread of the pandemic to unique and exotic cultural practices. Social scientists have seen rituals of purification, rites of passage, polygamy and African systems of belief as barriers to AIDS prevention. Gausset suggests that the problem should not be configured as one of different cultural practices such as ‘dry sex’, but as unsafe sex that may transmit the virus from one sexual network to another.47 Public health campaigns that fight against systems of belief that do not fit biomedical discourses can only be counterproductive. A careful analysis of AIDS stigma in Bushbuckridge supports this argument. There can be little doubt that the terrible stigma of AIDS, arising from the conception that AIDS victims are ‘dead before dying’ has been a formidable barrier to effective treatment and care. Yet it cannot be attributed merely to local belief. Such stigma is as much a product of public health campaigns that construct AIDS as a terminal illness, and of biomedical interventions that emphasise prevention rather than treatment, as it is of local concepts of death. In this respect, there is great need for critical reflexivity and introspection within biomedicine. The association of AIDS with death has important implications, at the levels both of theory and of practice. Harriet Deacon points to a serious imbalance in the literature on HIV and AIDS: whereas most researchers in this area examine the ways in which people view and 46 In local narratives, witches cut out the tongues of their zombies, rendering them mute. They also reduced them to only a metre in size, so that they were uniform, small and of a diminutive, childlike, status. Zombies were sexless and devoid of human desires, and worked only for maize porridge. See I. Niehaus, ‘Witches and Zombies of the South African Lowveld: Discourse, Accusations and Subjective Reality’, Journal of the Royal Anthropological Institute, 11, 2 (2005), pp. 191–210. 47 Q. Gausset, ‘AIDS and Cultural Practices in Africa: The Case of the Tonga (Zambia)’, Social Science and Medicine, 52 (2001), pp. 509 –18.



speak about sex and sexuality, few have explored the construction of AIDS-related sicknesses.48 This is understandable, given the grim and emotionally taxing nature of the latter task. Researchers, too, have remained in comfort zones, keeping silent about the more disturbing aspects of AIDS. Yet it is precisely in this unexplored terrain that its stigma presides. The construction of AIDS not only as incurable, but also as an untreatable condition without hope accounts for people’s inclination not to undertake HIV tests, nor even to use anti-retroviral therapies. The perception of persons with AIDS as ‘dead before dying’ also has consequences for efforts to stem the spread of the pandemic. In their classical study of patients in a leprosarium in Louisiana, Zachary Gussow and George Tracy show that in addition to therapy, destigmatisation was an essential strategy for healing leprosy.49 Patients did not merely respond by ‘impression management’,50 but actively struggled to overcome the onerous burden of stigma through cultural redefinition. They formulated an alternative theory to remove leprosy from its previous status as a maximal horrible sickness, constructed it as ‘mildly contagious’, and changed its name to ‘Hansen’s disease’. Through hospital visits and through engagement by ‘career patients’ in educational activities they brought the ‘real facts’ before the public. Similarly, in the time of AIDS the creation of hope hinges not only upon political struggles for social security and accessible medication, but also upon symbolic redefinition. Constructing AIDS as an infectious but manageable chronic disease, more akin to high blood pressure and to diabetes than to leprosy, is essential to its destigmatisation. Hope might well be the most important incentive for practising safe sex, taking HIV tests, and using antiretroviral therapies. Career patients, too, might be able to play an important role. In Bushbuckridge, campaigns in which healthy persons living with HIV addressed teachers’ unions are likely to be a great deal more successful than the fire-and-brimstone sermons about sexual abstinence during AIDS awareness classes at school. ISAK NIEHAUS School of Social Sciences, Brunel University, Uxbridge UB8 3PH, Middlesex, UK. E-mail: [email protected]

48 Deacon, Understanding AIDS Stigma, p. 56. 49 Z. Gussow and G. Tracy, ‘Status, Ideology and Adaptation to Stigmatised Illness: A Study of Leprosy’, in D. Landy (ed.), Culture, Disease and Healing: Studies in Medical Anthropology (New York, Macmillan, 1977), pp. 152 –69. 50 E. Goffman, Stigma: Notes on the Management of Spoilt Identity (Harmondsworth, Penguin, 1971).