AIDS in the Shadow of Biomedicine

Inside South Africa's Epidemic

Isak Niehaus

• Publisher: Zed Books
• Year: 2018
• ISBN:
  9781786994769
• Edition: 1
• Topic: Social Sciences
• Subtopic: Anthropology
• Index: Social Sciences

The Bushbuckridge region of South Africa has one of the highest rates of HIV infection in the world. Having first arrived in the area in the early 1990s, the disease spread rapidly, and by 2008 life expectancies had fallen by 12 years for men and 14 years for women. Since 2005, public health facilities have increasingly offered free HAART (highly active antiretroviral therapy) treatment, offering a degree of hope, but uptake and adherence to the therapy has been sporadic and uneven. Drawing on his extensive ethnographic research, carried out in Bushbuckridge over the course of 25 years, Isak Niehaus reveals how the AIDS pandemic has been experienced at the village-level. Most significantly, he shows how local cultural practices and values have shaped responses to the epidemic. For example, while local attitudes towards death and misfortune have contributed to the stigma around AIDS, kinship structures have also facilitated the adoption and care of AIDS orphans. Such practices challenge us to rethink the role played by culture in understanding and treating sickness, with Niehaus showing how an appreciation of local beliefs and customs is essential to any effective strategy of AIDS treatment. Overturning many of our assumptions on disease prevention, the book is essential reading for practitioners as well as researchers in global health, anthropology, sociology, epidemiology and scholars interested in public health and administration in sub-Saharan Africa.

1

Introduction

In 2001, the LoveLife AIDS awareness campaign established a Y-Centre at a trading centre near Impalahoek. LoveLife aimed to promote ‘motivational optimism’ and ‘positive sexuality’ as a lifestyle brand among local youth. The centre offered computer training, ballroom dancing, studio broadcasting and basketball. It also housed a ‘wellness room’, where youth received health-related counselling, and a ‘chill room’, where they read LoveLife literature. The Y-Centre attracted hundreds of young people.

Throughout my fieldwork, I nonetheless heard constant criticisms that LoveLife promoted urban American street styles. I was told that instructors taught attendants to sing the ‘pizza’ song: ‘A Pizza Hut, a Pizza Hut, Kentucky Fried Chicken and a Pizza Hut, McDonald’s, McDonald’s’. During one promotional event, LoveLife parked a massive yacht on a trailer outside the centre to celebrate a voyage it had undertaken to Antarctica. The irony of the spectacle of a boat in the middle of a semi-arid environment did not go unnoticed by passers-by. Girls often played netball, a popular South African women’s sport, on the basketball court (Wahlstrom 2002; Stadler 2011: 85–9). Residents also commented critically on a LoveLife poster that asked: ‘If you aren’t talking to your Child about Sex, Who Is? In vernacular kinship models, it is the obligation of the mother’s brother (malome) and mother’s younger sister (mangwane) – not of the mother and father – to speak to boys and girls about sexual matters.

The muted frictions arising from LoveLife’s campaign demonstrate the salience of cultural miscommunication. Many villagers perceived earnest attempts to raise awareness about AIDS as alienating impositions. This was especially apparent when organisations such as LoveLife made dubious assumptions about the universal appropriateness of specific modes of entertainment, consumption, personal ambitions, games and ways of speech. Such initiatives seem to treat local meanings and practices as irrelevant, or as exotic exemplars of cultural difference that constitute barriers to HIV prevention and treatment. The latter stance is most apparent in the prejudicial views of polygamy, wife exchange, the levirate and dry sex as facilitating the spread of HIV in Africa (Gausset 2001).

One can rightly ask: where are the anthropologists? The marginalisation of anthropological expertise runs counter to the expectations of the enthusiastic founders the subdiscipline we now call medical anthropology. Physician-anthropologists such as Leslie (1976), Kleinman (1978) and Helman (1984) warned of the dangers of biomedical reductionism, which offered too limited a vision to grasp the complexities of health problems. Kleinman (1978) called on anthropologists to engage in comparative ethnographic research of medical systems as cultural systems and envisioned a key role for anthropologists as brokers within clinical practice and public health programmes. But the salience of bureaucratic logic and objectivity in international public health proved to be a formidable obstacle. Endeavours to measure morbidity and mortality rates have attracted far greater resources than attempts to understand ‘lived experiences of sickness’ (Kleinman 1995).

New orientations within anthropology itself have endangered the realisation of this original project. A focus on broad processes shaping our world, and on trans-local flows of pathogens, medical meanings and therapeutic resources (Petryna et al. 2006; Petryna 2009; Ong and Collier 2005), has eclipsed earlier concerns with the particularities of sickness and healing in specific settings. Influential proponents of world systems and globalisation theory go so far as to describe the fieldwork-based approach of Boas and Malinowski, which seeks to understand micro-level social relations, ritual and symbolism, as a ‘wrong turn’ in the history of anthropology (Wolf 1982; Singer 1989). More recently, a focus on the body and ‘biopolitics’ has also threatened to marginalise concerns with social and cultural specificities. Scholars contend that individuals increasingly perceive of themselves in somatic terms, and demand rights and resources based on their membership to universal biomedical categories (Petryna 2002; 2004). In the case of HIV/AIDS, influential analysts show how sick persons fashion new selves and novel modes of belonging through testing for HIV antibodies, participating in workshops, learning to speak publicly about AIDS, and using antiretroviral medication (Biehl 2007; Nguyen 2010). From this perspective, biomedical meanings and cosmopolitan lifestyles have, like steamrollers, obliterated existing social and symbolic forms. Biopolitical theorists do not suggest that cosmopolitan practices are uniquely appropriate, but they assert that these have attained problematic hegemony. From their vantage point, songs about McDonald’s, aspirations about visiting Antarctica, basketball and free speech about sex have become integral features of the life worlds of local youth.

In this monograph, I seek to provide a detailed ethnographic account of how the HIV/AIDS pandemic unfolded in Impalahoek. In so doing, my aim is to formulate a more nuanced perspective on the way in which AIDS awareness and treatment programmes have intersected with existing social and symbolic forms; and to elucidate resultant ‘frictions’ in this regard (Tsing 2004). I contend that configurations that exist well beyond the clinic and other domains of professional healthcare – in the proverbial shadow of biomedicine – have profoundly shaped experiences of the pandemic. These include not only broader political and economic transitions – such as the end of apartheid, the entrenchment of African nationalism, and de-industrialisation – but also, and perhaps more relevant from an ethnographic perspective, meanings, practices and interpersonal relations that characterise everyday social interactions in the village setting.

Impalahoek is an appropriate site for such investigation. The village has one of the highest incidences of HIV infection worldwide. As insecurely employed labour migrants from a peripheral location, residents of Impalahoek have experienced the effects of broader political and economic fluctuations more acutely than securely employed workers from central locations. Yet, at the same time, the village is home to thriving folk traditions that are used to express difference, if not outright rejection, of cosmopolitan urban lifestyles (see Mitchell 2001: 12).

Empirically, I draw on the results of ongoing ethnographic research. Since 1990, I have visited Impalahoek for periods of at least four weeks each year, usually during the winter. Such episodic or multi-temporal fieldwork (Whyte 2013) has enabled me to observe the history of the pandemic over a 25-year period. I learned about daily life and events by doing participant observation and ‘being around’ political meetings, school staffrooms, hospitals, shops, football games, church services, rituals, divination sessions and funerals. I also conducted in-depth interviews specifically on the topic of HIV/AIDS with three different ‘snowball’ samples. Between 2002 and 2005, I recorded the sexual biographies of 27 men and documented their opinions about the origins and nature of HIV/AIDS. (Gunvor Jonnson interviewed 25 women to complement the material I collected.) I subsequently interviewed 21 persons who were diagnosed HIV-positive and used highly active antiretroviral therapy (HAART) about their experiences of sickness and therapy, and the heads of 22 households who were providing care for AIDS orphans. Although none of the samples are statistically representative, I believe that they capture some of the diversities of experiences of HIV and AIDS among villagers in Impalahoek and also in the larger Bushbuckridge region.

All informants were previously known to my research assistants and had every right to refuse to participate. They were not offered any inducement, apart from the opportunity to contribute to the production of a history of the pandemic, which would be read by students and the members of future generations. Interviews were conducted in English, Northern Sotho and Tsonga and were recorded only in writing, because research participants feared that audiocassette recordings might compromise their anonymity. I relied on research assistants to translate difficult phrases in Northern Sotho and all narratives in Tsonga (a language I do not understand). We endeavoured to visit the research participants on separate occasions, to renew acquaintances and learn about how their lives had changed through time.

Research participants were generally confident and outspoken people who valued the opportunity to relay their own experiences and to speak out against the way in which the authorities had managed the pandemic. My status, not merely as a sympathetic outsider but also as a lone white person working with and among black people, constituted an important subtext to many interviews and conversations.¹ In Bushbuckridge, white people are most frequently businesspeople and doctors, and it is likely that some research participants might have associated me with hospital and clinic-based health workers. This perception was reinforced by the fact that I spoke openly about the potential benefits of antiretroviral therapy during interviews and might well have inhibited their criticisms of biomedical interventions. But these effects were mitigated by prior knowledge of my status as a student of history and of culture, and by the perception that white persons are generally opposed to many policies of South Africa’s government.

Theoretically, my analysis of health-related interactions is inspired by Ortner’s (1984) critique of a capitalist-centred world view, and by Sahlins’ (1985; 1993) attempt to rethink colonial encounters in the Pacific islands. Ortner writes, very persuasively, that history is all too frequently treated ‘as something that arrives like a ship, from outside the society in question (1984: 143). Whereas political economists tend to situate themselves on the ship, anthropologists have the unique capacity, developed largely through fieldwork, to ‘take the perspective of folks on the shore’ (ibid.: 143). For Sahlins, a central error of elite historiography is to presuppose a universal bourgeois subject and be unmindful of the culture of ‘subalterns’. ‘The agents of imperialism,’ he writes, ‘are not the exclusive players of the only game in town’ (Sahlins 1993: 9). Sahlins contends that people understood and narrated events such as the arrival of Captain Cook in Hawai’i and the landing of British colonists in Karaka Bay, New Zealand, through established symbolic structures and storylines. They acted upon these through established forms of social organisation (Sahlins 1985; 1993).

Following Sahlins’ and Ortner’s lines of reasoning, I endeavour to show how residents of Impalahoek have understood AIDS-related sicknesses, and have engaged with biomedical interventions, through existing structures of meaning (pertaining to death, misfortune and dreams); and how they have acted upon these interventions through established modes of practice (allocating blame, speaking, seeking therapy, and taking care). Structures of meaning might well be more incoherent, permeable and amenable to contestation than Sahlins implies. There is also a danger that a critical focus on cultural idioms might ignore other forms of misrecognition, such as social class distinctions (Stadler and Hlongwa 2002; Hunter 2010). These lessons are well taken. We should use them as reasons to refine our attempts at understanding meaning and practice, rather than cast them out with the proverbial essentialist bathwater.

In the remainder of this chapter, I provide a critical overview of how what has come to be known as ‘biopolitical’ theory has shaped studies of HIV/AIDS, and why I believe such a theory has endangered an understanding of the social and cultural specificities of the pandemic. I then provide a brief history of Bushbuckridge, showing how popular discourses and sickness aetiologies have shaped experiences of HIV/AIDS. In the final part of this introduction, I outline the contours of my argument, as expressed in my organisation of the book.

Biopolitics and HIV/AIDS

Over the past two decades there has been a decisive shift in medical anthropology towards the somatic and to the body as ‘subject of governance’. This interest was inspired by Foucault’s (1973; 1977) and Agamben’s (1998; 2005) observation that politics is increasingly situated at the level of biological life. Whereas earlier governments had invested in the power to ‘make die and let live’, Foucault contends that nineteenth-century European states used power to ‘make life’. This project was marked by concerns with the welfare of populations and with the ‘anatomo-politics’ of individual bodies. By implementing measures to improve health, and by monitoring, regulating and disciplining the bodies of citizens, states began to intervene in the ‘vital characteristics of human existence’. For Foucault, ‘biopower’ was exemplified by the development of scientific knowledge, and by the creation of institutions such as hospitals and asylums that implant modes of bodily conduct. ‘Biopower’ progressively extended beyond the state, to become dotted across the social landscape (Foucault 1980).

Agamben’s (1998; 2005) analysis of sovereignty begins with a discussion of the homo sacer. This obscure category in Roman law denoted a person whose crimes disqualified him or her from being a sacrificial victim, but whom anyone could kill with impunity. For Agamben, this legal category continued to be a hidden aspect of power, because the right to take life remained intrinsic to sovereignty. This is evident in the capacity of states to enforce ‘states of exception’ in which they suspend the rule of law in the name of ‘self-defence’. The threat of confining persons to zones of torture and death backs up the commands of government and extends to experts such as jurists and doctors who exercise authority over the vital existence of humans.

Rose (2001; 2006) and Rabinow and Rose (2006) develop these insights. They observe that contemporary developments in genetics, the neuro-sciences and medical technology have led to a resurgence of biological accounts of human capacities. In the emerging ‘biopolitics’, power relations attain a ‘pastoral appearance’. States and private corporations create the conditions for – and enhance the obligations of – individuals to manage their own health.² These agents embrace statistical reasoning and recommend preventative interventions to reduce risks. Such interventions to protect ‘bare life’ and restrict ‘defective’ biological propensities expand and refine strategies of control. In this process, the body is transformed into a site for working on and modifying the self. Individuals increasingly perceive the self in terms of the functioning of genes and molecules and become active participants in the ‘will to health’ (Rose 2001: 7). They see biology as improvable, invest in economies of hope, and change their life course through acts of choice.

According to Rose and Novas (2005) and Rabinow and Rose (2006), these developments pave the way for the emergence of new forms of citizenship and sociality. Biomedical technologies increasingly yield categories of social import. These categories have come to underpin the way in which ...