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Myths or theories? Alternative beliefs about HIV and AIDS in South African working class communities a

David Dickinson a

Department of Sociology, University of the Witwatersrand, Private Bag 3, WITS, 2050, South Africa Author email: Published online: 19 Dec 2013.

To cite this article: David Dickinson (2013) Myths or theories? Alternative beliefs about HIV and AIDS in South African working class communities, African Journal of AIDS Research, 12:3, 121-130, DOI: 10.2989/16085906.2013.863212 To link to this article: http://dx.doi.org/10.2989/16085906.2013.863212

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ISSN 1608-5906 EISSN 1727-9445 http://dx.doi.org/10.2989/16085906.2013.863212

Myths or theories? Alternative beliefs about HIV and AIDS in South African working class communities David Dickinson

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Department of Sociology, University of the Witwatersrand, Private Bag 3, WITS, 2050, South Africa Author email: [email protected] Despite three decades of public health promotion based on the scientific explanation of HIV/AIDS, alternative explanations of the disease continue to circulate. While these are seen as counter-productive to health education efforts, what is rarely analysed is their plurality and their tenacity. This article analyses the ‘AIDS myths’ collected by African HIV/AIDS workplace peer educators during an action research project. These beliefs about HIV/AIDS are organised, in this article, around core ideas that form the basis of ‘folk’ and ‘lay theories’ of HIV/AIDS. These constitute non-scientific explanations of HIV/AIDS, with folk theories drawing on bodies of knowledge that are independent of HIV/AIDS while lay theories are generated in response to the disease. A categorisation of alternative beliefs about HIV/AIDS is presented which comprises three folk theories — African traditional beliefs, Christian theology, and racial conspiracy — and three lay theories, all focused on avoiding HIV infection. Using this schema, the article describes how the plausibility of these alternative theories of HIV/AIDS lies not in their scientific validity, but in the robustness of the core idea at the heart of each folk or lay theory. Folk and lay theories of HIV/AIDS are also often highly palatable in that they provide hope and comfort in terms of prevention, cure, and the allocation of blame. This study argue that there is coherence and value to these alternative HIV/AIDS beliefs which should not be dismissed as ignorance, idle speculation or simple misunderstandings. A serious engagement with folk and lay theories of HIV/AIDS helps explain the continued circulation of alternative beliefs of HIV/AIDS and the slow uptake of behavioural change messages around the disease. Keywords: Christian theology, folk and lay theories, health education, HIV/AIDS, myths, peer educators, racial conspiracy theories, traditional African beliefs

Introduction Alternative explanations for HIV/AIDS to that of medical science continue to circulate despite intensive educational efforts. Although it is not possible to measure what impact these alternative explanations have on prevention, testing, and treatment, they are clearly not helpful. This article draws on a research project that utilised peer educators to identify explanations of HIV/AIDS circulating within African working class communities. What follows is an interrogation of why these alternative explanations of HIV/AIDS continue to circulate after almost three decades of heath education. Scholarship on alternative explanations of HIV/AIDS uses a range of terminology including ‘myths’, ‘legends’, ‘lay theories’, and ‘conspiracy beliefs’. These terms capture a duality or ambiguity about how such beliefs can be viewed. They may be regarded as simply error or misunderstanding. However, they can be seen as explanations which, while incorrect when measured against scientific knowledge, have popular credibility and serve a purpose. Thus, a ‘myth’ (the term used in the research project) can describe very different things. At its most profound, ‘myths of origin’ explain how the world, people or other entity came about. Myths of origin and the worldviews they support influence social and individual beliefs and behaviour (Honko 1984, Malinowski 1984). By contrast, the idea of a myth when

invoked in ordinary language often implies, in a straightforward way, that a belief is incorrect; a misunderstanding or error. As such, the behaviour that such a misunderstanding may support is misguided, but it is not loaded with values and meaning and can be easily corrected by providing information that is intelligible to the recipient. An examination of alternative explanations of HIV/AIDS needs to distinguish between deeply held beliefs about AIDS and simple misunderstandings. Thus, for example, somebody who thinks that ‘doubling up’, i.e. using two condoms simultaneously, will provide extra protection from HIV infection misunderstands condoms. That doubling up helps prevent infection may be a widespread misunderstanding, but it is not one linked to significant beliefs. Should it be explained that two latex surfaces when rubbed together will ‘blast’ the condoms, your account is likely to be believed. Or, at any rate, any disagreement will be about the properties of latex. But if someone thinks that there are ‘worms’ in condoms and it is these worms that cause HIV/AIDS, changing this view is more difficult. The belief is not really whether condoms contain worms, but why some people are motivated to spread HIV/AIDS using worms in condoms as a vector. The collective nature of these alternative explanations is critical to distinguishing them from misunderstandings. A misunderstanding about HIV/AIDS or condoms or other

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related topics may be common, but unless it is worked into a larger explanation or theory, it remains a simple error or lack of knowledge that can be corrected with relative ease. By contrast, the alternative explanations of HIV/AIDS that we are concerned with are collectively maintained. Such beliefs are not, however, on the same scale as myths of origin. In this article we are therefore concerned with the conceptual space between mythical explanation of origin, and with an individual’s misunderstandings. Scholars have explored these alternative explanations of HIV/AIDS in different contexts. Levine and Siegel (1992) explain how gay men in American cities utilised components of the public health model of HIV/AIDS to construct ‘lay theories’ such as selecting partners on their visible health, to justify unprotected sex, even after these ideas had been officially abandoned as scientifically incorrect. Early in the epidemic Epstein (1997) outlined how there was a genocide frame put forward as a rallying cry for gay men’s response to HIV/AIDS, but with their incorporation into AIDS policy making, these genocidal explanations of AIDS all but disappeared. Goldstein (2004) studied ‘AIDS legends’ as a folklorist in Newfoundland, Canada, where prevalence rates were low, in comparison to either the gay communities of American cities or the general population of many African countries. These legends frequently speak to lay assessments of risk. At their most radical, Goldstein suggests they constitute a rejection of public health messages in the public’s bedrooms, with a series of AIDS legends placing risk in public rather than private spaces, such as contaminated needles left on cinema seats. Despite the extensive and rich collection of legends documented by Goldstein (2004), she does not find any direct challenge to the medical understanding of AIDS. Research among African Americans, however, indicates widespread belief in AIDS conspiracy theories (Klonoff and Landrine 1999, Bogart and Thornburn 2005) some of which directly contradict medical science. Mackenzie (2011) identifies three types of conspiracy theories about AIDS within the African American population: the implication of government in the creation of the virus; inaction of government agencies that allows genocide; and the mechanism of the conspiracy, such as testing and medication being used to spread the virus. Mackenzie argues for the need to shift away from seeing these conspiracy theories as individual, and delusional, views. Like Farmer (1999), Mackenzie (2011) points out that these theories provide a counter narrative to the dominant public discourse. These counter narratives help defend the identities of individuals ‘spoiled’ by association with high rates of HIV infection among their population group. Literature on sub-Saharan Africa cites a wider plurality of alternative explanations of HIV/AIDS, some of which contribute radically different, non-scientific explanations. In addition to racial conspiracy theories (constructed with different local detail to those of African Americans) and lay theories of how to avoid infection (also constructed with specific local content), there are African traditional beliefs. These include witchcraft, pollution, and the ancestors, as well as Christian-based AIDS beliefs.1 Authors looking at this range of HIV/AIDS explanation include: Ashforth

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(2005) on witchcraft in South Africa; Stadler (2003a), Robins (2004) and Rödlach (2006) on witchcraft and racial conspiracy beliefs as mechanisms for blaming others in Zimbabwe and South Africa; Fassin and Schneider (2003) and Fassin (2007) on racial conspiracy beliefs emerging from South Africa’s apartheid past; Ingstad (1990) and Heald (2002) on AIDS as a traditional disease in Botswana; and Liddell et al. (2005) working across the three core components of African traditional beliefs. The relationship between these alternative explanations of HIV/AIDS and bio-medicine is an area that many authors grapple with. Green’s (1994) formulation of proximal and distal understanding of illness is one way in which the integration of bio-medical and other beliefs can be achieved; bio-medicine provides a proximal (or immediate) explanation of the disease while, for example, witchcraft explains why it is that the individual, and not others, is a victim; the distal or ultimate reason. Helpful as this dual etiology of disease is, other writers point to a unstable shuttling between the allopathic and witchcraft explanations of AIDS (Hunter 2010) or that that there are two types of AIDS, one resulting from sex and the other from witchcraft (Steinberg 2008). Approaching the range of explanations of AIDS in circulation, several authors argue that there is a gendered dimension to AIDS beliefs with women more willing to accept the allopathic explanations and men more inclined to concur with racial conspiracy theories (Stadler 2003b, Niehaus and Jonsson 2005, McNeill 2009). What we can conclude is that there is a complex plurality of beliefs about HIV and AIDS at play within African communities and that we still only have a partial grasp of how and why these etic, or internal, explanations are generated, communicated and believed. Much analysis of alternative explanations of HIV/ AIDS critiques conventional health communication strategies which are frequently unaware of (or prefer to remain untroubled by) these competing explanations of HIV/AIDS. Some authors go beyond addressing the significance of these alternative beliefs about HIV/AIDS for public health. Niehaus (2009: 31) argues that HIV/AIDS can be “a vehicle for talking about moral and political decay...including the erosion of patriarchy, political corruption, the high incidence of murder and of rape and the legislation of abortion and gay marriage.” Steinberg’s (2008) account of a young man’s refusal to undergo an HIV test, for which several AIDS myths are mobilised, is linked finally to the undermining of African patriarchy and a crisis of masculinity. Fassin (2007) argues that in South Africa race is a reservoir of resentment resulting in mistrust of authority and a belief in racial conspiracy theories with which Mbeki’s AIDS denialism resonated. Clearly, alternative beliefs help determine how people individually respond to HIV/AIDS and how the epidemic is responded to collectively. It is also clear that our understanding of these alternative beliefs is incomplete. As Kunda and Tomaselli (2010: 110) have argued, “the task for researchers and consequently public health experts is the appreciation of the [HIV/AIDS] discourses operating in communities in order to better engage them.” This paper seeks to understand the etic power of these alternative explanations of HIV/AIDS that keeps them in play. After

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outlining the methodology of the project on which this article is based, a categorisation of alternative HIV/AIDS beliefs is put forward based on a grouping of recorded AIDS myths linked to a core idea forming the heart of either a folk or lay theory. There then follows a discussion on the plausibility and palatability of these theories. This helps us understand how these explanations of AIDS that compete with those of medical science continue to endure despite extensive educational programmes. A concluding section looks at folk and lay theories of HIV/AIDS as credible explanations and the need to re-think health education in the area of AIDS.

provided a useful pointer on how common particular beliefs were in their communities. Much of the workshops were taken up with developing stories or parables to counter some of the myths identified (Dickinson 2011). Towards the end of the project I conducted interviews with 23 of the participating peer educators. The interviews, between one and three hours long, were structured around the most common and most perplexing AIDS myths that had emerged during the project.

Methodology

This section organises the AIDS myths collected by the peer educators into three folk and three lay theories of AIDS. 2 I differentiated folk from lay theories based on their reference to a wider body of knowledge that exists independent of HIV/AIDS. These were Christianity (of certain denominations and/or theologies); African traditional beliefs; and racial domination linked to the power of authority. These bodies of knowledge were applied to the problem of HIV/AIDS which is interpreted through this lens. By contrast lay theories were generated in response to a particular situation, in this case HIV/AIDS, and the problems it presents. The boundary between folk and lay theories is not impervious, just as it is not between folk and lay theories and the biomedical canon of knowledge. However, by organising alternative explanations of HIV/AIDS in this way this study argues that there is order and coherence behind many of reported AIDS myths that might otherwise be dismissed as ignorance, idle speculation, or simple misunderstandings. Folk and lay theories are based on a core idea or set of ideas around which specific myths or legends form auxiliary theories.3 Thus, at the heart of each folk or lay theory of HIV/AIDS are a set of core ideas from which auxiliary beliefs, expressed as particular AIDS myths, are generated. It is this combined core idea and the specific expressions or formulations that are linked to it that make up each distinct folk or lay theory of HIV/AIDS. The nesting of auxiliary beliefs can involve several levels resulting in a layered belt of hypotheses that help explain the durability of these alternative theories. An illustration of this dense layering is provided by the common AIDS myth, with many variants, that the HIV virus is being placed in condoms. This frequently presents as an auxiliary hypothesis to that of (white) scientists having deliberately created HIV/AIDS which in turn forms an auxiliary hypothesis to that of AIDS being a weapon of racial genocide. For those who do not believe that this is true, AIDS as racial genocide is not a credible explanation. However, such racial conspiracy theories and their auxiliary hypotheses may not be easy to discredit in the minds of others. A belief that condoms are infected with HIV with the intention of infecting blacks lies not in the scientific robustness of such a proposition, but on its plausibility to an audience with little scientific schooling; even less commitment to scientific methods; with experiences of racism; and who are aware of, and give credence to, historic exemplars of the involvement of science in racial genocide such as the Tuskegee experiments (Thomas and Quinn 1991) or,

Between October 2008 and July 2009, I ran a participatory action research project (Whyte 1989) with a group of 28 African workplace HIV/AIDS peer educators at ‘Digco’, a South African mining company, for which ethical clearance was obtained from the Wits University Human Research Ethics Committee. The project involved the peer educators recording AIDS myths that they heard in their communities, overwhelmingly African townships, and developing stories that could be told in response. The AIDS myths that peer educators were asked to report were defined as: a belief about HIV/AIDS that is not true (by current scientific consensus) but which some people believe is true, and which is collectively constructed, transmitted and adapted. This latter aspect, an AIDS myth’s collective nature, was something that emerged during workshop discussions with the peer educators. Of the peer educators, 75% were men, a figure that needs to be compared against the workforce of Digco which, not untypically for a mining company, is 89% male. On average, they had been employed by Digco for 11.9 years (ranging from 1 to 28 years). Eight had been peer educators for more than 6 years, 6 for more than 3 years, and 12 for less than 3 year. Education ranged from below Grade 8 to four with national diplomas. A total of 11 peer educators had passed Grade 12, and 7 had passed Grade 11. Their home languages indicate a range of ethnicities reflective of the townships around Digco. The predominant home language was isiZulu (17 peer educators). The other languages spoken at home were: four Sesotho (four), isiXhosa (two), Sepedi (two), Xitsonga (two) and SiSwati (one). Two peer educators also used a second language at home, one spoke Sepedi and the other isiZulu. Each peer educator was issued with a digital recorder and was asked to provide reports in the language of their choice. Over 300 recordings were submitted in English, Afrikaans, isiXhosa, isiZulu, Sepedi, and Sesotho. These were translated and transcribed into English. Most reports were on AIDS myths that had been encountered within peer environments. A series of six workshops provided an opportunity to discuss the AIDS myths that had been recorded. It also allowed a rough gauge of how common some of the reported myths were using a ‘vox pop’ technique in which the peer educators present were asked if they had heard a particular myth within the last two years. This technique excluded a ‘friend-of-a-friend,’ newspaper or television as sources. While ‘rough-and-ready’ this vox pop technique

A classification of alternative explanations of HIV/AIDS

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in South Africa, Dr Basson’s biological warfare programme (Niehaus and Jonsson 2005). Focusing on individual AIDS myths may be misleading. We can spend a lot of time analysing a particular AIDS myth (and even longer trying to discredit it) but we would fail to see the ‘wood for the trees’. What we need to understand is not individual beliefs that differ from the scientific explanation of AIDS, but core ideas from which there are generated. The next section organises the AIDS myths recorded in the project around six ideas at the core of three folk and three lay theories of HIV/AIDS.

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Findings Many AIDS myths and variants were identified during the research project. Some were recorded by the peer educators, others emerged during workshop discussions, and others were reported during the interviews. Some were only reported once, others on several occasions. Some were obviously closely linked to each other; the links between others only became apparent during discussions that took place in workshops or the interviews. From this process emerged a classification of the AIDS myths into three folk and three lay theories of HIV/AIDS. For each of these theories, the core ideas at the heart of theory is given along with the auxiliary theories, captured as AIDS myths in the project, that draw from and buttress these theories. Folk theories Racism and authority The core idea of a racial folk theory of HIV/AIDS is that whites are using the disease to kill or in other ways control Africans. The timing of the epidemic, at the very moment that the African majority was able to vote provides a plausible context for such beliefs in South Africa. The transition to a black majority government also negates components of this theory since it breaks the previous alignment of power and race. Some of the AIDS myths identified indicate a partial transitioning from racial to authority based explanations of HIV/AIDS. Box 1 lists the AIDS myths identified in the project and which form auxiliary theories to this folk theory of HIV/AIDS. That racist beliefs might be extended to genocidal policies has been given credence by Dr Wouter Basson (Myth 1), an apartheid-era government scientist who provides a

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parallel symbolism to the United States Tuskegee syphilis experiment. Basson investigated the use of biological weapons, though not HIV, that would target blacks (Niehaus and Jonsson 2005, Washington 2007). All the 20 peer educators in one of the project workshops reported having heard the myth of Basson developing HIV in a vox pop poll. Additionally, as Schneider and Fassin (2002) point out, longstanding attempts to control African fertility by the apartheid government contribute to the notion of racial conspiracy to reduce the African population. One of the recorded AIDS myths argued that AIDS does not exist, but that the insistence that people use condoms to prevent infection was part of a conspiracy to control the number of Africans (see Box 1). The AIDS myths linked to racial theories generally fit well into Mackenzie’s (2011) three-part breakdown of ‘AIDS counter-narratives’; the creation of the virus (AIDS myths 1–4, Box 1), a negligent response from those in authority (AIDS myths 5–7, Box 1), and the various mechanisms by which the virus is transmitted (AIDS myths 8–10, Box 1). Most of these are located in the South African context: Dr Basson, White farmers (the backbone of apartheid), and White and Indian doctors in government hospitals make appearances as originators and propagators of the disease. There is some indication of a transitioning of these conspiracy myths from being purely race based, to being based on authority in particular the current African National Congress (ANC) government (variations of Myths 5–7 and 10, Box 1). Where this is the case, such myths cease to be linked solely to a racial folk theory and transform into AIDS counter-narratives rooted in a critique of political power in which class also becomes salient. At what point these might becomes the basis of two distinctly separated explanations of AIDS in South Africa is difficult to say. Traditional African beliefs on pollution, witchcraft and ancestors Liddell et al. (2005) use the term ‘indigenous representation of illness’ to explore how Africans have traditionally understood the ultimate causes of illness — pollution, witchcraft and ancestral displeasure — that explain individual sickness and also “comprise a powerful mechanism for ensuring social cohesion and stability” (p 694). Box 2 lists the AIDS myths identified in the project and which form auxiliary theories to this folk theory of HIV/AIDS.

Box 1: Racism (and authority) folk explanation of HIV/AIDS Core idea: HIV/AIDS is used to kill or control Africans/working class or poor Africans Auxiliary theories/AIDS myths 1. Dr Basson created HIV 2. Whites/Americans created HIV 3. AIDS comes from whites sleeping with animals or black women being forced to sleep with animals 4. AIDS only affects Africans (i.e. designed in this way) 5. A cure is known, but is being withheld (by the South African government or by White scientists) 6. African traditional medicines can cure AIDS, but they are not licensed because whites want to control the number of Africans 7. Government supplied condoms are rubbish (i.e. will blast or burst) 8. HIV put in oranges/other fruit (e.g. by White farmers) 9. HIV put in condoms/condom lubricant 10. Doctors, frequently White or Indian, inject patients with HIV 11. Condoms are to control the African population (AIDS does not exist)

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Ancestral belief is the core component of traditional African belief. However, despite widespread belief in the ancestors, this provides only limited material for AIDS myths (Myth 12 and, arguably, 13, Box 2). For many Africans ancestral displeasure, as a result of being neglected, opens individuals to misfortune including sickness. Generally, however, a line appears to be drawn at the idea of ancestors being malicious enough to send AIDS, given their predominantly protective and benevolent role. More common are myths on AIDS resulting from the breaching of traditional prescriptions on sexual conduct particularly when this has resulted in pollution as a result of contact with death (Douglas 2002). These myths (14–18, Box 2) included sex with widows/widowers, sex with a woman who has had an abortion or miscarried without subsequent cleansing. Pollution beliefs extend beyond contact with death to the danger of widespread multiple sexual partnerships which transgress traditional value systems (though not polygyny). An important AIDS myth that works alongside several traditional beliefs is that indiscriminate mixing of bodily fluids (which may or may not be contaminated with disease) can create different diseases (Myth 19, Box 2). Such theories may refer to the generation of AIDS or to traditional, ethno-ecological diseases that are misdiagnosed as AIDS. The idea of AIDS resulting from pollution leads to the myth that traditional healers can cure AIDS or its ethno-ecological doppelganger. Cures based on traditional healers’ pharmacopeia frequently overlap with myths on patent medicines as a cure for AIDS (Myth 21, Box 2). In South Africa advertisements for patent medicines, used to ‘clean the blood,’ stress their herbal content and traditionally-based formulae. The ability of traditional healers to cure AIDS or other diseases is generally conceptualised not as the termination of the disease agent (as germ theory postulates), but by

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relocating the disease/affliction at a distance from the client: out in the veldt (bush) or at a crossroads (where it will be picked up and taken elsewhere by a passerby), sent back to the originating witch, or directly transferred to another person. This conception of AIDS (or more likely its ethnoecological doppelganger) is linked to AIDS Myth 16 and, arguably, 17 (see Box 2). The third major component of African traditional beliefs, witchcraft, provides an explanation for infection, often linked to existing social tensions. Several authors highlight witchcraft as an explanation that allows people to attribute blame to others actions (Macdonald 1996, Stadler 2003a, Robins 2004, Ashforth 2005, Rödlach 2006). Recorded witchcraft myths focused on AIDS or a doppelganger being sent by witchcraft/magic or via witches’ familiars (Myth 20, Box 2). Several recorded witchcraft myths formed part of a binary perspective of good and evil, with witches sending AIDS which prayer/God could heal (see the next section). Such constructions demonstrate how belief in witchcraft, a key component of traditional African belief, can be incorporated into other folk theories. Christian religion beliefs At the core of religious folk theory of AIDS, which in the context of this research is focused on Christian denominations, is a bio-moral theory that draws on interpretations of Biblical texts that link sickness to sin and offer healing. Box 3 lists the AIDS myths identified in the project which form auxiliary theories to this folk theory of HIV/AIDS. At the social level religious interpretations of HIV/AIDS (Myth 22, Box 3) allows perceived moral decay to be blamed on deviations from an interpretation of God’s law, linked to Biblical prophecy of incurable diseases in the Last Days (Myth 23, Box 3), while at the individual level it

Box 2: Traditional African beliefs: Folk explanations of HIV/AIDS Core ideas: Traditional ideas of ancestors, pollution, and witchcraft explain HIV/AIDS Auxiliary theories/AIDS myths 12. Ancestors can protect you from/warn you about HIV 13. Ancestral calling to be a traditional healer is misdiagnosed as AIDS 14. AIDS is mistaken for traditional disease resulting from taboo sexual contact (e.g. with a widow, with a woman whose had an abortion or miscarriage, etc.) 15. Traditional healers can cure these traditional diseases that are misdiagnosed as AIDS/antiretrovirals (ARVs) are harmful 16. AIDS/what is misdiagnosed as AIDS can be cured though sex with strangers/virgins 17. People cleansing for diseases misdiagnosed as AIDS may pass this disease to sexual partners through sex 18. Correct cleansing procedures will prevent traditional diseases that are misdiagnosed as AIDS 19. AIDS/disease misdiagnosed as AIDS results from mixing of bodily fluids (typically within a woman’s womb) 20. AIDS or something mimicking AIDS is sent by witches or their familiars 21. AIDS can be cured with patent medicine (stressing herbal/traditional content)

Box 3: Christian religious folk explanation of HIV/AIDS Core ideas: God’s Biblical law explains AIDS and God is capable of miracles Auxiliary theories/AIDS myths 22. AIDS is the result of sex outside of marriage/Biblically prescribed relationships 23. AIDS is a disease of the Last Days (Book of Revelations) 24. God can cure AIDS 25. You don’t have to wear a condom if you trust in God

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draws attention to individuals’ infringements of Biblical laws governing sexual conduct. While this theory places blame on those who transgress these laws, some Christian denominations offer a cure for HIV/AIDS (Myth 24, Box 3) through a process of salvation, achieved through God’s grace, provided a range of conditions are met by the supplicant. One of these conditions is faith in God’s ability to do anything. Demonstrating such faith may involve discontinuing other forms of treatment, such as antiretrovirals. In general, the message of these religious discourses is ‘no sex before marriage’ and to ‘be faithful in marriage’. The hope for a cure of HIV/AIDS is reserved, essentially, for repentant sinners. Myth 25 (Box 3) that you don’t need to use a condom if you trust God4 presents the tension between the two main ideas at the heart of this folk theory: God’s power and the need to obey God’s laws. Lay theories of HIV/AIDS Lay theories can be distinguished from folk theories in that they are put together from observations that lie outside an established canon of knowledge or belief. Although they may borrow from and overlap with folk theories (as well as scientific explanations), they utilise only selected ideas and do not indicate a wholesale subscribing to the bio-moral (Heald 2006) content of any folk theory of HIV/AIDS. Most of the AIDS myths linked to the lay theories concern ways in which HIV infection can be avoided. The first lay theory is that of partner selection to avoid HIV infection. Partner selection to avoid HIV infection We have long been aware of beliefs regarding who is and who is not infected with HIV/AIDS. Maticka-Tyndale (1992: 245) explained how “judging [sexual] partners by appearance or reputation” is used to avoid infection, or at least the fear of infection. Box 4 lists the AIDS myths identified in the project and which form auxiliary theories to this lay theory of HIV/AIDS. Cues for identifying who is likely to be infected with HIV can take different forms (Myths 26–34, Box 4). However, all are based on the same idea: selection of partners, by visual clues or character evaluation allows you to identify who is HIV-negative and who positive. Friction theory of HIV transmission Two further lay theories on avoiding HIV infection focus not on partner selection but on seeking to exploit loopholes in the understood transmission mechanism of HIV during

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sex. Through the interviews with the peer educators I established that, away from the scientific understanding of the HIV virus being able to cross mucus membranes, two lay theories of transmission during vaginal sex exist. The first is ‘friction theory’ and the second is ‘the penis sucks theory.’ In interviews it became clear that the peer educators were taught the friction theory of transmission in which some damage to capillaries always occurs in the sexual organs of both men and women during penetrative sex. This meant that the two people’s blood would mix and HIV could be transmitted. In some cases it was put forward that this damage was too small to see with the naked eye (i.e. there was no visible blood), but in a supporting auxiliary theory the tingling sensation reported when washing after sex was put down to this slight but invisible damage. Box 5 lists the AIDS myths identified in the project and which form auxiliary theories to this lay theory of HIV transmission. A practical advantage of this theory for peer educators was to be able to argue against the AIDS myth that no blood on the genitals meant it was safe to have sex (Myth 34, Box 5). More significantly, however, the theory allowed trainers to avoid the difficult explanation of how HIV can cross mucus membranes, a concept which the peer educators were not familiar with.5 Friction theory was, by contrast, a convincing explanation of disease transmission that paralleled the dangers of the virus been transmitted during an accident; a mechanical explanation of infection which peer educators were extremely comfortable in describing. It also resonated with pollution beliefs within the African traditional beliefs paradigm, though this was not the intention of the training. Friction theory is able to explain the AIDS myths of the second and subsequent rounds of sex being safe without a condom (Myth 35, Box 5); the woman’s vagina has now lubricated/opened and friction reduced. The same reasoning underlies the AIDS myths of the safety of sex with an older woman whose vagina is now ‘loose’ (Myth 36, Box 5) and shallow penetration being safe (Myth 36, Box 5) since it involves less friction. The penis sucks lay theory of HIV transmission In the interviews it emerged that there is an alternative lay physiological explanation of HIV transmission from women to men (which was not taught to peer educators, but was present in their communities), based on the ‘penis sucking’. This theory posits that immediately after ejaculation the

Box 4: Partners selection lay theory to avoid HIV infection Core idea: HIV-positive individuals can be identified by distinguishing features or attributes Auxiliary theories/AIDS myths 26. Beautiful people are not infected 27. Young people are not infected 28. Fat people are not infected 29. Healthy looking people are not infected 30. Old people are not infected 31. Educated people are not infected 32. People who are not sex workers are not infected 33. Those you know well/trust are not infected 34. If there is no blood on a person’s genitals then it is safe to have sex

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penis sucks in fluids (see Niehaus 2009: 26 for a separate observation of this belief). Box 6 lists the AIDS myths identified in the project and which form auxiliary theories to this lay theory of HIV/AIDS. Neither friction theory, nor an explanation based on mucus membranes, can account for AIDS myths 38–40 (Box 6), including that sex is safe on the first round (when friction is most likely) but that condoms should be worn for subsequent rounds (Myth 38, Box 6) that directly contradicts Myth 35. However, belief in the penis sucks theory provides an explanation for this AIDS myth, based on the idea that the woman has not yet reached orgasm and released dangerous/polluted fluids into her vagina that the penis will suck up following ejaculation, an idea more explicitly indicated by Myth 39 (Box 6). It also explains otherwise perplexing AIDS myths that a man can protect himself (and not the woman) from infection by practicing coitus interruptus (Myth 40, Box 6). This lay theory is contested. This is not surprisingly given rival lay explanations of HIV transmission during sex. One of the recorded myths is based on the idea that the penis does not suck and, therefore, that a man cannot be infected with HIV when having vaginal sex (Myth 41, Box 6). This denial of the penis sucks lay theory does not, however, conform to the medical explanation or friction theory of HIV transmission, as it denies male vulnerability to infection completely. Discussion Organised into folk and lay theories, it is clear that AIDS myths are not the random products of ‘ignorance’ of AIDS facts. Rather, they form components of ‘signifying grids’ (Tomaselli 2011) which assist individuals to understand the disease, differently from the explanations of medical science. Any individual AIDS myth is not generally a standalone idea, but an auxiliary theory that is generated from, and supports, a particular core idea at the heart of a folk or lay theory. We now examine the strength of these alternative theories of HIV/AIDS in terms of their plausibility and their palatability in comparison to medical science.

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The core idea of the medical model of AIDS is scientific knowledge, specifically germ theory and our understanding of viruses. Yet such science is often meaningless to those with little or no scientific schooling. The credibility of a core idea starts with is its plausibility. Yamba (1997: 200) points out that, where traditional beliefs are in play, it is naive to think that science will trump all in an open contest, “... biomedical discourse is perceived [by those holding to traditional ideas and perceived traditions] as reverting to concepts such as chance and accident to explain what all people know to be due to infractions of traditional norms, inevitably resulting in evil through sorcery or witchcraft.” Here, our belief in the rationality of science is turned on its head. Seen through others’ eyes, it is the explanation of science that becomes vague, flimsy, unsatisfactory or just plain nonsense. Measured against this unsatisfactory explanation, alternatives such as bodily pollution causing disease or whites conspiring to kills blacks can be more easily grasped and provide a more plausible explanation. If a folk or lay theory, represented at any moment by particular AIDS myths or auxiliary theories that are generated from it, is not only plausible but also palatable, then it will provide an attractive alternative. The palatability of alternative explanations of HIV/AIDS can come from the pleasure it allows. Key to this is the pleasure of unprotected sex and the lifting of restrictions on abstinence and faithfulness, the ABC of public health HIV prevention messaging. Once an individual is HIV-positive key aspects of palatability are first, denial that it is really HIV/AIDS and, second, that there is hope of a cure; particularly the hope for a complete cure that rids the person of the burden and stigma of AIDS. There can be interaction between these two principles. A plausible explanation will be strengthened if its recommendations legitimise, rather than deny, pleasure or hope; consequently a myth that is less attractive than medical science is unlikely to endure. Alternatively, somebody seeking pleasure or hope may well be attracted to, and be more willing to believe in the plausibility of, alternative explanations of HIV/AIDS. Folk and lay theories can promote three areas of palatability: first, a way of preventing infection; second, a cure for AIDS; and, third, the shifting of responsibility for

Box 5: The friction theory of HIV transmission Core Idea: Friction during sex damages blood vessels and results in the mixing of blood Auxiliary theories/AIDS myths 35. Sex without a condom on the second and subsequent ‘rounds’ is safe 36. Sex with an old woman is safe 37. Shallow penetration is safe

Box 6: The penis sucks lay theory of HIV transmission Core idea: The penis sucks after ejaculation drawing in fluids Auxiliary theories/AIDS myths 38. Sex without a condom is safe on the first ‘round’ of sex 39. It is safe if the man ejaculates before a woman reaches an orgasm 40. Coitus interruptus protects the man 41. A man can’t be infected with HIV because the penis doesn’t suck (a denial of this lay theory that engages with the idea of the penis sucking)

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infection and illness to a third party. In comparison, the attractiveness of the scientific explanation of HIV/AIDS is often limited. Prevention requires one of the strategies of abstinence, being faithful, or using condoms, all of which have drawbacks and limitations. While antiretroviral drugs contain the disease this is not a cure and, even without side effects, the prospect of a lifetime on pills is far from attractive. Finally, rather than allowing individuals to transfer blame to others the explanations provided by Western medicine generally link infection to personal sexual behaviour. Table 1 summarises how the different folk and lay theories of HIV/AIDS compare with the bio-medical explanation of HIV/AIDS in regard to plausibility and the three identified components of palatability. Table 1 provides a summarised comparison of the plausibility and palatability of the rival theories of HIV/AIDS. However, this simplified scheme of a complex environment has several limitations. While the table indicates the palatability of different theories in shifting of responsibility for infection it does not distinguish the extent to which this is collective and/or individual mechanism. Racial folk or conspiracy theories can be seen as demonstrating, collective, racial defence mechanisms (Farmer 1999), as well as providing an explanation for why an individual has become infected, for example, that they were injected by a White doctor. However, not all theories provide both collective and individual mechanisms for shifting responsibility. Ashforth (2005) argued that the AIDS epidemic will be interpreted as an epidemic of witchcraft. This idea has been criticised by for example Rödlach (2006), who failed to find such a proliferation of witchcraft accusations comparable to the epidemic. Rather, it seems that witchcraft remains a potential mechanism for explaining individual’s infection, but, unlike racism, is generally not seen as a credible explanation for the epidemic as a whole. Table 1 also gives no indication of whether the different theories of AIDS have a gendered dimension. Niehaus and Jonsson (2005: 179) sharply divide explanations for AIDS, with women blaming men’s careless and unscrupulous sexual conduct for infecting them, while men “invoked conspiracy theories, blaming translocal agents…

for the pandemic”. Both sets of gendered narratives allow blame to be shifted from personal responsibility to others. However, Niehaus and Jonsson (2005) see much more externalisation by men than women. While the AIDS myths reported by the peer educators in the research project often demonstrated a gender dimension in the form of blaming the opposite sex, they came from both men and women. This appeared to be a reflection of gender tensions and not a fundamentally different way of appointing blame between men and women suggested by Niehaus and Jonsson (2005). However, what Table 1 does illustrate is that all the alternative theories of HIV/AIDS are based on two factors. First, they are based on foundations that are plausible, outside of the scientific paradigm, and, second, their auxiliary hypothesis can offer, at least in some dimensions, more palatable explanations than those of allopathic medicine. Conclusion Individual AIDS myths may appear bizarre when initially encountered. However, understood as components of wider folk or lay theories their plausibility and attractiveness become apparent. Viewed from the inside they can provide credible and appealing explanations of HIV/AIDS. They are neither simple misunderstandings nor are they plucked out of the air at random. Rather, they can be linked to wider theories that provide alternative explanations to that of medical science. These explanations are not always discrete nor are they always compatible with each other. Ignoring the frequent cross fertilisation between bio-medical, folk and lay theories, it can be seen that there is a multi-faceted competition between these different theories of HIV/AIDS. Health promotion efforts should acknowledge this, rather than see it as a binary conflict with bio-medicine up against obscure and unfounded notions and superstitions. While there can be some alignment and borrowing between theories, fundamentally all theories are in competition. Moreover, the conflict is asymmetric: different theories draw on different resources, operate

Table 1: The plausibility and palatability of competing explanations of AIDS

Theory

Plausibility

Racial and authority

Racial power relationships

Pollution

African traditional worldview

Witchcraft Ancestors Christian Religion

African traditional worldview African traditional worldview Religious belief and Bible texts

Lay theories to avoid infection Western medicine

Observation and lay physiology Science and support from allied institutions

Palatability Prevention without ABC

Cure

(limited) (limited) 6

Only via ABC

: Indicates no greater palatability than Western medical science. : Indicates a greater palatability than Western medical science.

Management as a chronic disease

Shifting of personal/responsibility Externalises to Whites or to those in authority Responsibility lies with self, but as failure to comply generally carries limited stigma. Externalises to personal enemies Responsibility lies with self, but since redemption is possible Largely amoral: based on individual being smart enough to avoid infection Responsibility for infection largely lies with own sexual behaviour

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across different spectrums of human concern and offer different configurations of assistance. This helps explain why AIDS myths have proved so hard to dislodge. Since folk and lay theories are not scientific in nature, attempting to dismantle AIDS myths using scientific information is inept. Successfully tackling one particular myth leaves the core idea from which it was generated untouched. Further, even if we were able to successfully demolish belief in all auxiliary hypothesis/AIDS myths of one folk or lay theory, the plurality of folk and lay theories means that an individual can shift allegiance to another explanation of AIDS. There is no guarantee that allegiance will be transferred to the bio-medical explanation of AIDS. The first thing to do when facing an opponent is to understand their strength. This article contributes to the body of analysis that takes AIDS myths seriously. By working across the full spectrum of these theories within South African working class communities, it has been possible to outline a categorisation that accounts for both their plurality and their tenacity in the face of strenuous health promotion. Efforts to bring about behaviour change can only be improved by understanding the plausibility and attractiveness of alternative explanations of AIDS within the psycho-social context of those we seek to educate Notes 1

2

3

4

5

There are presumably alternative explanations of HIV/AIDS provided by religions other than Christianity. These are not, however, prominent in the literature and were not present in this research. In this I am using an adapted version of Kleinman’s (1980) division of explanatory models of illness into three areas: professional, folk and popular. I use, however, ‘lay’ rather than ‘popular,’ following Levine and Siegel (1992). This organisation of folk and lay theories of AIDS draws inspiration from Imre Lakatos’ (1978) outline of how rival scientific research programmes compete. Lakatos argues that each scientific programme seeking to explain a field or area has a ‘core idea’ which lies at its heart. Protagonists of these core ideas generate ‘auxiliary hypotheses’ which explain and predict phenomena in the field of study. As well as reflecting the power of the underlying idea (and of course the strength and funding of the scientific teams committed to particular programmes) auxiliary hypotheses also protect the core idea from attack. As long as the belt of auxiliary hypotheses has vigour, the scientific programmes of which they are a part retain adherents who will generate new hypotheses based on the core idea. Lakatos was, however, modelling competition between different scientific theories which share common principles of method, evidence and falsification. We should not, therefore, directly compare the model of competing scientific research programmes with the competition of rival explanations of AIDS. Thus, while an analogy is useful, we need to recognise that these rival theories of AIDS exist in different paradigms of thought. Usually, they do not even share common methods for evaluating the auxiliary hypothesis that surround their different core ideas. This myth was not prevalent. It was recorded on one occasion and reported to have been heard by three out of nine peer educators in a vox pop count. This can be compared to, for example, the AIDS myth that God can cure AIDS which had 7 recordings and 8 out of 16 peer educators having heard it in a vox pop count. Apart from eliminating the possibility that the virus can pass

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6

through an intact mucus membrane, friction theory is otherwise in line with scientific understanding of HIV transmission, particularly the heightened risks of infection when ulcerative sexually transmitted infections are present or there is damage to the vagina as a result of rape or dry sex practices. Except Myth 25 (see Table 1).

The author — David Dickinson is a professor of Sociology at Wits University, Johannesburg. The research for this article was conducted while at the Wits Business School. He has published in the areas of HIV/AIDS in the workplace and peer education. Acknowledgements — I thank the participating peer educators for their commitment to the project. HIV/AIDS managers, nurses and medical practitioners at Digco facilitated the project in many ways. Tshepiso Moloi was an able research assistant. Administrative support was provided by Krish Sigamoney and Nirvana Sandra of the Wits Business School. A research grant from the Research Committee of the Faculty of Commerce, Law and Management at the University of the Witwatersrand funded the research. Useful comments on the research were provided by staff at Digco, at seminars at the Wits Business School and the Department of Sociology, and by two anonymous reviewers.

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