Introduction

I now turn to the lives of young people who lost one or both parents, many to the HIV and AIDS epidemic, in the Amatikwe neighbourhood of Okhahlamba. In doing so, I trace the ways in which the young people themselves often sought relationships of care with adults, including relatives and neighbours. A focus on everyday life enables an appreciation of the multiple and varied nature of the young people's lives and begins through a description of their relationships; a description that is at odds with the assumptions of passivity and unmitigated vulnerability circulating in discourse concerning ‘AIDS orphans’.

In an essay inviting research to do with children in relation to geographies of political violence and structural inequalities that are in themselves violent, Veena Das and Pamela Reynolds (2003: 1) acknowledge that forms of violence can be most fruitfully considered together. When they are treated separately, being poor is perceived as a condition not unlike an illness. It is constituted as a generalized lack where poor people are rendered passive victims, and yet paradoxically often blamed for their poverty. As a consequence, poverty is depoliticized. In contrast to the idea of considering children as passive victims, Das and Reynolds call upon researchers to ‘focus on the child navigating the everyday with care-giving responsibilities and devising strategies of survival’. Paying attention to children, a task more difficult than is often assumed, allows suspension of ‘the tendency to interpret [their] lives within the languages and scripts we use for understanding adults’, and the shedding of ‘assumptions taken-for-granted about normality and pathology’ in relation to children's survival strategies (ibid: 2). The strength of Das and Reynolds’ approach is to uphold what I shall refer to, for heuristic reasons, as the double nature of everyday life worlds – a consideration of the everyday life of children and youth as holding within them a ‘continuous recreation of both belongingness and survival’ (my emphasis) (ibid: 1).

The spectre of the AIDS orphan, as it has circulated in global discourse across many forms of media, has linked the idea of parental death to various kinds of social pathology. In the most extreme cases, it is assumed that children who lose their biological parents through death necessarily remain without adult guidance, do not receive proper care, become homeless; and are in danger of not being socialized appropriately, and, therefore, of demonstrating criminal, anti-social behaviour.

From March 2003 to February 2006, I lived in Okhahlamba, a portion of the uThukela District in the South African province of KwaZulu-Natal. I had come to this mountainous region abutting the northern Drakensberg (Dragon's Mountain) to record the experiences of people living in a context of HIV and AIDS among African communities in the Ngwane and Zizi chieftaincies, and adjoining African freehold settlements. I hoped that whatever I came to write would reflect the concerns of rural people and would pay close attention to local ways in which the illness, through time, was folded into everyday life, as well as how people used language to reflect upon its devastating presence. My aim was to provide an ethnographic record of a particular period in which suffering from the illness was acute, and where, prior to readily available antiretroviral treatment, death was inevitable. In particular, I wished to trace repertoires of care outside of the formal institutional domains of hospitals and clinics, in order to show what people in limited circumstances brought to bear on the illness when there was little assistance forthcoming from the state. As it happens, the book spans a period in which antiretrovirals were initially unavailable, and moves on to a time when treatment became accessible in various ways. It therefore begins with the presence of overwhelming death and mourning, after which hope gradually became manifest in the recovery of a number of people through antiretroviral therapies and ‘the return’ of bodies they could recognize as their own – bodies that had recovered from a state of emaciation.

Notwithstanding the ‘crisis of representation’ that has unsettled anthropology over the last 25 years by overturning the discipline's former claims to objective ‘truth’ (see Clifford 1988, Clifford & Marcus 1986), I uphold the value of ethnographic study both as a research methodology and as an art of writing. In so far as ethnographic research implies protracted interaction with people over time, where an attempt is made to reflect a range of local views and practices pertaining to interlocutors ‘in the field’, it provides important records of and insights into the unfolding textures of everyday life (Fabian 1983). These are textures that include the presence of the anthropologist, a presence that has its effects.

The book has drawn attention to care as a form of hospitality offered between the relatively well and the ill and dying in Okhahlamba. Forms of care were described in relation to a particular kind of illness, lesisifo, more broadly referred to as HIV and AIDS, that has come to dwell among people in ways that compromise so much of social life and yet that call for its reconstitution. The simultaneous unravelling and remaking of sociality across the boundaries of the living and the dead made up the parameters of care in the region.

Care and its opposite were found at many levels of social organisation, the dimensions of which emerged within detailed accounts of individuals’ journeys towards health and death in relation to their illness. Journeying in search of healing on the part of individuals also encompassed the qualities of variable and transforming social relationships in which they were immersed. The isolation and form of social death Nkosinathi, for example, experienced, as described in Chapter One, became manifest when his experience of extreme suffering remained unacknowledged by some members of his family. Silence and lack of recognition, the withdrawal of touch – that which insists on our humanity and on the possibility of exchange between persons – issued into being a form of profound alienation.

More generally, the unevenness of proffered care became manifest at the level of the state, in hospitals, in clinics, in relation to the comportment of nurses, home-based carers, family members and the self. Care and its intermittent withdrawal were linked to forms of institutional incoherence, where institutions bore the trace of histories of neglect and deliberate discrimination. In the intimate spaces of family, the sometimes refusal of care could be partially understood as due to state interventions within families, where mobility and migration resulted in forms of separation and estrangement – forms of separation where people nevertheless strove to reconstitute rural homes as sites of significance, and as social nodes where senses of particular forms of belonging were located.

The possibility of a degree of suspension of care within the family was also understood in relation to the visceral dimensions of undergoing AIDS, as a form of dismembering, not only of the material body, but of the social body.

As described in the Introduction, my two research assistants in Okhahlamba were Phumzile Ndlovu and Zanele Mchunu. Within the NGO where they worked, Phumzile was responsible for co-ordinating the work of volunteer home-based carers in Okhahlamba, who had trained in palliative care in 1999, and who were responsible for caring for the ill in their neighbourhoods. Zanele undertook intervention work with ‘vulnerable children and youth’, to use the terminology of the NGO and global development sectors. She had ongoing contact with children and young people who had lost one or both parents through death.

Describing the scope of their activities in more detail, once a month, Phumzile convened a large meeting of all the home-based carers within the region in the NGO offices in Bergville, in which she encouraged them in their work. On occasion, speakers were asked to address the meeting, including personnel from the Department of Social Welfare, Treatment Action Campaign (TAC) members from Pietermaritzburg, and more frequently, a doctor from the local hospital with whom carers had formed an ongoing and open relationship. Phumzile also attended support-group meetings for home-based carers in four areas of Okhahlamba, where volunteers could speak of their problems in relation to specific patients and their families, and of their own emotional turmoil in the face of the suffering they witnessed. She recorded the minutes of intermittent inter-sectoral meetings of interested parties across local communities and racial divides, where their contribution to confronting the AIDS epidemic was discussed. Groupings involved included: church groups, the police, personnel from the provincial education department, a few doctors from the local Emmaus Hospital, charitable bodies, the personnel of a small local orphanage in which only two children lived for most of the research period, other NGOs, myself and interested individuals. Phumzile attended an AIDS task group meeting set up at Emmaus Hospital, to which I was also invited. I attended many of the above meetings, recording them and writing notes concerning my observations of them.

Phumzile introduced me to the home-based carers at one of their general meetings, during the first month of my living in Okhahlamba. The group was made up of 77 members, although on average, only 43 regularly attended general meetings. Only two of the carers were men.

In the presence of death

I wish to sketch briefly the reception of individual deaths in the neighbourhoods in which I came to know people, to create an awareness of the effects of the multiplication of deaths within the society of the living; the ways in which death casts shadows amongst those who survive; the ways in which a preponderance of death is deeply disturbing to people's sense of the world and its proper construction. In the previous chapter, I dealt with how the particular forms of death attendant upon AIDS – preceded as they are by protracted, corporeal suffering, and attached to notions of shame – may realign social relationships. Here, I relate Phumzile's and my ongoing interaction with another young man, Mandla Shabalala, and his family. Through remaining close to our unfolding relationships, I seek to delineate the ways in which questions of ethics, in relation to research and in the face of a particular person's suffering, emerged through time, in careful mutual creation of co-presence. An ethical thread to our interaction could not be presupposed through an appeal to a pre-given set of rules. Instead, it emerged within sensitivities, including the capacity on our part to suspend a particular approach and to reconfigure how to listen to pain and silence at different moments. In short, through our interaction with Mandla, we learned how to accompany a particular person in his suffering. We developed an ethic of suspending too quick an understanding, of holding off the impulse to intervene, or to fill silence with speech, to allow an ill person time in which to engage in ways that they had chosen.

The research, commingling with a certain intimacy, as is the nature of ethnographic work, was increasingly conducted with a weighty sense of the presence and possibility of death. Phumzile and I frequently attended and heard of funerals. In September 2003, Zinhle, the home-based carer of the young man whose story appeared in the previous chapter, compiled a map with me of 68 homesteads out of the hundred in her neighbourhood. We placed a red dot next to 22 out of the 68 homes in which no deaths had occurred from November 1999 to the day on which we drew the map in September 2003.

In 1994, following the first democratic elections, the new South African state sought to create a unitary public healthcare system. It was to be a particularly daunting task, given the uneven, discriminatory and inequitable structures that had been inherited from the apartheid state. Out of a number of parallel and racialized health services, the new state planned to bring together and yet to decentralize health delivery across national, provincial, district and community levels of organization. Resources and services were to be distributed between the different organizational levels in order to provide a ‘continuum of care’ for patients through various forms of referral that, in addition to hospital and clinic care, encompassed community and home-based care (Marais 2005: 64).

Great emphasis was placed on supporting communities in carrying out their own immediate care functions. Promulgating ‘the community’ as a potential resource for care followed on from primary healthcare models in which people on the ground necessarily formed an integral part. The notion of community-based care, aligned as it was with the ideas of self-reliance circulating globally within neo-liberal discourse, had particular local appeal for an emerging nation, in which each person was ‘called upon’ to play their part, and in which ‘local solutions’ were high on an Africanist agenda. Indeed, relying on community-based care was not only envisaged as an activity that would solve issues of scale, quality and sustainability, but also as one that would contribute to community solidarity and mutual assistance. In the terminology of the 2001 National Guidelines for Home-Based Care/Community-Based Care (DOH 2001a: 3), a bed-rock of community-based care was envisaged as something that would encourage ‘traditional community life’ and create ‘responsibility’ within particular localities (Mills 2004: 3, DOH 2001a: 3). The latter idea demonstrated a surprising confluence between local systems of solidarity – on which poor people undoubtedly depend – and the ideal of ubuntu, a history of cooperative struggle in confronting the apartheid state and neo-liberal ideas of self-reliance (Marais 2005: 66).

In the guidelines, written before the availability of antiretroviral medication through the public health system, care was defined as ‘the provision of health services by formal and informal caregivers in the home, in order to promote, restore and maintain a person's maximum level of comfort, function and health including care towards a dignified death’ (DOH 2001a: 1).

In Okhahlamba, death attendant upon AIDS was not perceived as the outcome of a neutral affliction for which there was no cure. Rather, death, on the scale with which it came to dwell among people, was tied up with the notion of a continuance of past social dissonance and histories of oppression, racial discrimination and dispossession. This chapter explores these understandings of a preponderance of death and illness, and how they intertwined with people's relationship with the state.

I approach the latter relationship tangentially by marking the ambiguities with which modernity was viewed from the point of view of two healers. To do so I draw on diverse conversations with them, as well as others, about the phenomenon of ill-health within the context of divisive histories in general. In their accounts, the failure of the wider world to support rural worlds is couched in apocalyptic terms, terms that reveal a sense of shared alienation from centres of power.

In tracing the life story of Ntuthuko Hadebe, an inyanga (the most common term for a diviner/herbalist of some kind), I seek to show how his relationship with worlds beyond the one into which he was born, and to which he returned, was expansive. In his life of migrancy, he welcomed opportunities through engaging tenaciously with the ‘ways of the road’ and by keeping ‘his eyes open’. All that he encountered beyond his place of birth was coloured by the inflection of his calling as an inyanga. The second story is that of an isangoma (a diviner), Nonhlanhla Duma, a woman who was herself HIV positive and whose account of being called to undertake training as a diviner marked a return to an edge of difference, at least for the duration of the journey to her trainer's home. Her being summoned by an ancestral voice steered her, against her wishes, away from Johannesburg and its ways. Both accounts contain the importance of maintaining ‘custom’, not only in relation to healing, but in relation to a re-evocation of ‘tradition’. Yet in the face of the AIDS epidemic, both healers insisted that they had no solution to the disease within their own healing frameworks. The isangoma also spoke volubly of the favourable effects of antiretroviral treatment.

The chapter considers the parallel existence of indigenous notions of health and healing and those belonging to bio-medicine, as well as their frequent combination.

In 2001, Andries Botha, a South African artist, contributed a work to an exhibition on AIDS at the South African National Gallery. On close inspection, the piece, ‘Rupture’, proved to be a rendering of human skin. The curators of the exhibition, Kyle Kauffman and Marilyn Martin, wrote that it was a:

Botha's depiction of skin in the publication in which it appears was accompanied by a written coda:

The chapter marks both the sufferings of the flesh and the ways in which cultural understandings around HIV and AIDS in Okhahlamba at times increased the suffering of those dying of AIDS due to social isolation, and to the attachment of ideas of physical and moral pollution to those who were ill. Prior to the availability of antiretroviral treatment, notions of social and bodily coherence could not be upheld in a context of death on such a large scale. The literal and figurative dangers attached to the body's fluids were powerfully experienced in a context of AIDS, where transmission was precisely due to the permeability of bodies and the communication of fluids between sexual partners and between the ill and their caretakers.

Social worlds dictate which social categories of people may touch whom and in what ways. Spaces of intimacy in social life often begin with care of the body, through an older person tending to the bodily needs of an infant. The infant is cleansed, fed, and fondled, coming to know different parts of its own body through their being named and touched. The social relation between the older person and the child, their affinity, and to a degree their social interchangeability, is underscored.

Isihloko senkondlo yami sithi Gciwane Ndodana kaNgculaza*

The heading of my poem, it says ‘Germ, son of AIDS’**

Trinity Njoko Busisiwe

8 August 2005, performance

Philakahle Hall, Bergville

This chapter narrates the love story of two HIV positive people, Ntombikayise Dladla and Olwethu Njabulo Bhengu. Depicting how they came to desire one another and how their courtship negotiated the discovery of the affliction they held in common, it suggests the implosive presence of HIV and AIDS within a relationship, and yet indicates how they upheld their wish to embrace life. Despite being ill, they insisted on the completion of drawn-out marriage negotiations. Neither Ntombikayise nor Njabulo came from wealthy families. The completion of a marriage held the possibility of respected personhood in the face of poverty and illness, notwithstanding the sometimes repressive contours of marriage. They came to live life in an acute way, apprehending the closeness of death: an apprehension that marked a journey through fear, through an initial compulsion to allocate blame – at least on Ntombikayise's part – into a place of mutual respect and care.

Ntombikayise's and Njabulo's story is one in which illness and the building of a particular kind of union were inextricably intertwined. In facing their illness openly, and in appearing in public together to speak of it, they came to reshape, to some extent, commonly held ideas of masculinities and femininities. Ntombikayise's and Njabulo's story is atypical of an area where many men insisted, both conceptually and often in practice, on a differential standing between men and women in their negotiation of intimacy. I relate it, however, because it suggests ways in which partnerships may become stronger through adversity, rather than dissolve. It indicates an amplification of each person's sense of self over time that is reminiscent of Foucault's emergence of the ethical subject through care of the self: ‘the self taking itself as a work to be accomplished’ (Davidson 2005: 128, Foucault 1986). It is a story that, although marking changes in each individual, demonstrates the importance of interdependence between people.