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Authors : Zanele Mchunu, Eleanor Preston-Whyte
Title: AIDS and the "Leaders of Tomorrow": Children's Voices from South Africa
Publication info: Ann Arbor, Michigan: MPublishing, University of Michigan Library
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June 2005
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Source: AIDS and the "Leaders of Tomorrow": Children's Voices from South Africa

no. ns 2, June 2005
URL: http://hdl.handle.net/2027/spo.4761530.0010.019

AIDS AND THE 'LEADERS OF TOMORROW': CHILDREN'S VOICES FROM SOUTH AFRICA

Zanele Mchunu

Eleanor Preston-Whyte

Centre for HIV/AIDS Networking (HIVAN), University of KwaZulu Natal [1]

Introduction

The recent conference held by the Institute for the Humanities at the University of Michigan entitled "Reframing Infectious Diseases" provided a welcome platform for contributions from the Humanities and Social Sciences to an arena normally dominated by the Bio-Medical and Health Sciences. It also allowed the voices of particular categories of people, both infected and affected by HIV/AIDS, to be heard. Among these were the voices of South African children whose lives and futures have been radically changed by the pandemic. This paper is about some of these children, amongst whom we and our colleagues have been conducting anthropological, and particularly ethnographic, field work as an integral element in a long term rural health and community development project [2]. The area where we are working is known as Okhahlamba and is situated in what is still a relatively isolated rural area of KwaZulu-Natal in South Africa (Figure 1). Although based on a case study of a fairly small group of children and teenagers, we believe the insights we have gained into their lives and the informal lessons we have learned from the children about development practice, will hold good for many other areas in the country and for the children experiencing the epidemic in them.

To provide some idea of the magnitude of the impact of the AIDS epidemic we note that UNAIDS has estimated that by 2004 some 2.2 million children had been orphaned in the country. In Sub Saharan Africa the number stood at 12 million (UNAIDS 2004). Besides these children, there are, however millions of others who live in poverty or will have poverty forced upon them by the ravages of the epidemic. The socio-economic impact of AIDS has been the subject of considerable research in rural South Africa and, drawing on this and on our own research findings, we provide a brief overview of the broader context in which the lives of the children in our case study are played out.

[figure]
Figure 1: South Africa

Part One: The context of the Epidemic in South Africa

Adult Stereotypes of Childhood versus Reality in the Time of AIDS

In many social systems, and notably in western societies and other countries espousing a generally western model of development, children, although extremely welcome additions to the family and community, are regarded as peripheral to its running and leadership. It is adults who make all major decisions on their behalf, and who are responsible for designing and imposing the parameters of the life they lead. In turn, children's worlds and experiences are largely ignored and are often hidden from adults. These worlds are revealed when children cease to behave as adults expect them to, and then their actions, rather than being valued when appropriate, and learned from, are a source of wonder and more often than not, opprobrium. In contrast to the West, in Africa, furthermore, adulthood was and, in many situations still is, generally defined by marriage, rather than by age alone. Unmarried teenagers and even people in their early twenties tend to be regarded by conservative adults as 'merely children' and they are largely excluded from decision making until they marry. For their part, these 'children' do not easily voice opinions and take leadership roles if there are adults around, and they are expected to behave with respect to those in senior social positions. Yet the AIDS epidemic has left many children to shoulder an increasing burden within households where adults are AIDS infected and require constant care as they face increasing weakness and death. In the absence of adequate social services and home care for the dying, it is children, moreover, who not only fill the gap before death, but who, after their parents die, are often left with younger siblings to comfort and provide with ongoing care and support. The growing literature abounds with descriptions of such familial and household scenarios and highlights the fact that many of those people routinely treated as 'children' contribute in a positive and active manner to the survival of the households in which they live. It is our contention that they also have much to offer to the social and community life around them. The message of this paper is a therefore positive one and, although it is not intended to deny or underestimate the rising and horrifying statistics of HIV infection and AIDS mortality, our story to some extent offsets the ongoing and apparently relentless tragedy that is emerging in South Africa.

Nkosi Johnson: Child Icon of the South African AIDS Epidemic

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Figure 2: Nkosi Johnson Speaks at the AIDS 2000 Conference in Durban

The name of a South African child, Nkosi Johnson echoed around the world when he shared the platform with President Mbeki at the opening of the 13th International AIDS Conference in Durban South Africa in 2000. Subsequently the world shared the sorrow of his family and other South Africans when he died from AIDS in 2001 at barely 12 years of age. Nkosi, like many, many other black South African children, was born with HIV. His mother did not know she was infected with the disease when she became pregnant, and even had she known, at that time she would have had no access to treatment to prevent the transmission of the disease to her child at birth. Although Nkosi's story, and that of the white South African woman who 'adopted' him when his own mother succumbed to AIDS is well known, it has recently been retold by Jim Wooten, one of the senior correspondents for ABC News's Nightline, in a book entitled "We Are All The Same" which was released to co-inside with World AIDS Day on December 1st 2004 (Wooten 2004). In reading this book one is forcibly struck not only by the tragedy of Nkosi's life and death, but by his indominatable spirit and his determination not to be beaten by the disease. He was determined, for instance, to attend school with other local children despite his growing frailty and frequent bouts of illness, not to mention the resistance and vociferous protests of the parents of the other children at the school who feared that their children would be infected by contact with Nkosi. As we will see, education is high on the agenda of other South African children affected by AIDS, but it often remains but a dream if both or even one parent dies.

Unfortunately, while the spread of HIV infection is closely associated with existing poverty, it also exacerbates it. Even before parents die children, and in particular daughters, are often taken out of school to care for the dying or because the sudden cessation of income from breadwinners means that the family can no longer afford school fees. In some cases such children are forced to enter the labor market prematurely and at a stage in their education when they can often secure only low paid manual and service work. Not only do such situations add to the immediate emotional trauma of living in a family hit by AIDS; they have longer term negative repercussions for the household in terms of the overall stability of the income it can command. Moving beyond the immediate household, education is increasingly indicated by development experts as the key to the regeneration of Africa, and to the ability of developing countries to achieve the sustainability enjoyed by the rich nations of the world. In the light of this it is both remarkable and hopeful that despite the epidemic, the group of children we describe here, have the confidence to call themselves "The Leaders of Tomorrow". It is their voices that are reflected in this paper.

Intervention Research with the Children of Okhahlamba

It is now recognized by social scientists that research with, and about, children requires a very particular set of skills and sensitivities (Brey 2003, Clacerty & Donald 2004, Swart-Kruger and Chawla 2002). Associated development and intervention activities that focus on children are, possibly, even more challenging. We have already drawn attention to the near universal separation of the world of those designated as 'children' and that of adults. In rural KwaZulu-Natal the gap between adults and children is maintained by a continuing conservative expectation that children will show respect and defer to their seniors, and adults in general, on all occasions. This makes it extremely difficult not only for adult outsiders, but also for adults in the community to penetrate their worlds and thoughts. By the same token it is not always easy to appreciate what lies below the surface of the respectful demeanor presented by most children and adolescents. This is exacerbated when these worlds have been invaded, and are pervaded, by grief at the loss of parents, siblings and by the subsequent destabilization of the security of the home in which they live. AIDS has thus heightened the need for the development of appropriate skills for working with the children of the epidemic on many fronts.

The approach used in the research and intervention undertaken in Okhahlamba is that of classical ethnography and team members live within communities that are experiencing the full ravages of AIDS. Within these communities many people, both adults in the prime of life, adolescents and young men and women in their twenties and early thirties are increasingly ill and debilitated. As the symptoms of their illness increase and can no longer be hidden, neighbors whisper that it must be the 'new disease' that is at work. This appears confirmed when they die unnaturally young. People in the community are, however, no strangers to poor health and high rates of mortality. Apartheid and progressive underdevelopment have led to years, and indeed, generations of poverty, to regular periods of pronounced hunger and to a paucity of accessible public health facilities. These factors have taken their toll and are now exacerbated by the demands made by AIDS both on individuals and on community morale and facilities. The concrete examples given below serve to drive this point home. Taken together, they paint an holistic picture of continuing underdevelopment and poverty - the classical scenario of rapid HIV transmission and AIDS the world over.

I. Competing calls on scarce resources

Households that are facing the crisis of AIDS forced on a daily basis to make hard choices about how both their limited income and the energies and time of members are expended. While in the past adults accompanied children and old people to clinics and hospitals, the tables are turned and it is now the children and elderly who, as the main care givers, are the ones to take the ailing to visit medical facilities and both Western and traditional medical practitioners. Seeking medical advice and treatment is both time and energy consuming. A whole day may be devoted to waiting for an infrequent bus to reach the nearest hospital or clinic. In many cases the trip may also entail first walking over mountainous terrain on foot for some hours to reach the bus stop. The alternative of a taxi or paying a neighbor for a lift can be prohibitively expensive and is only done in an emergency or if the patient is unable to walk - which in often the case with people in the last stages of AIDS. The relatively slow pace of rural life is increased by the poor coverage of the area by medical, and particularly provincial hospital and secondary heath facilities.

In Okhahlamba there is a small local hospital some thirty kilometers from where many of the children we are working with live. Although it was taken over from the mission that established it by the provincial health authorities, only some of its facilities have been upgraded and extended. It is to this hospital that the children and their parents go if they decide to consult a western medical doctor, or require such services as inoculations, antenatal and maternity care. For most the journey consists of at least an hours walk from home, invariably followed by a long wait for a bus or even a taxi. The cost of the journey may be more than that of a few days food for the whole family. The large district hospital to which the seriously ill must be taken, is about a hundred kilometers away and may well take a whole day to reach. Taxis are available, but at considerable cost, or the small trucks of neighbors can sometimes be hired for the journey. Alternatively a lift may be begged from someone who has a car and is known to be going in the same general direction as the hospital. But there are dangers. Most rural drivers are men and 'lifts' present them with the opportunity to proposition women and young girls. Alternatively drivers may proposition or demand on the side. If a young woman or girl has little money, they may suggest sex in lieu of payment. The danger of infection with HIV is clear.

An alternative to visiting the hospital is to consult one of the many traditional healers operating throughout Okhahlamba. The consultation and treatment charges levied by these practitioners are, however, often as much as or even more than that of a trip to the clinic or hospital. Private Western doctors have consulting rooms in the nearest small town, but although they may prescribe and supply some medicines (again at a cost), they invariably refer patients who need in-patient treatment to the district hospital.

On all sides the cost of medical treatment is high, and in a poor household, and one, perhaps, with only one occasional earner, competes with the need for basic food. It is often only when illness is acute that action is taken and then treatment may be commensurately more expensive. Sadly, when the expenditure is made, the treatment may come too late. In the case of basic food, the choices are just as stark. A nutritious and healthy diet is a luxury in Okhahlamba, and once again, in an effort to eek out minimal resources, the more filling and less nutritious foods may be substituted for that which is advised but which is more expensive. In the case of AIDS sufferers injunctions from medical advisors on all sides is for a diet including fresh vegetables and fruit. With the exception of a few locally grown varieties, these must be purchased at high cost from local shops. Then there are the calls of school fees, which are, as we will see, a recurrent and pressing need that tragically often has to be balanced against the provision of food. These expenses are added to in the era of AIDS morbidity and death, by the calls of neighborhood and community obligation, which enjoin on families and households the need to make regular small to sizable gifts in cash or kind when neighbors (and kin) are celebrating family events, or more often today, when they are in dire straights. The tacit understanding is that the 'debt' will be paid back when the givers are themselves are performing the same ceremonies or are in need of assistance.

II. Social Capital and the limits to reciprocity

As the above suggests, what Marcel Mauss referred to as the principle of reciprocity (Mauss 1967) operates very strongly in South African rural areas where people are involved with each other in multiple ways as neighbors, kin and church fellows. Others are long standing work mates or met each other when both were migrants in town. They have a history of living close to each other, of co-operation and, over time, of two way reciprocal support and help. This is what is often referred to as community 'social capital' (Putnam 1993, Bourdieu 1983, Campbell 2003, Grix 2001) and has been hailed as what makes communities cohere, and the individuals in them remain supportive of each other. Such communities are, it is assumed, able to weather communal crises such as natural hazards and epidemics such as AIDS. It also, Putnam has argued, makes such communities likely and able to embrace new development trajectories. There is another side to the picture, however. While at one level reciprocal obligations provide an informal mechanism for short term insurance against disaster, at another, reciprocal giving and support may strain the depth of individual and community resources. If the balance tips too heavily on the side of shared need, over time people may be unable to return the support and obligatory gifts of cash and kind from which they have previously benefited. Just when their neighbors are most in need, resources and then good will and co-operation run dry. The deepening of poverty leads to such situations, and, over time AIDS is having the same effect. Operating together, existing poverty and AIDS re-enforce each other. In such situations reciprocity becomes an insurmountable burden and what may once have been a reciprocal and supportive milieu collapses. This point is being (and has been) reached in many South African rural areas and it is AIDS that has been the final blow to a fragile system that no longer depends on subsistence livelihoods to which all family and household members contributed as they were able. Today all households are dependant on wage labor and earnings from the informal economy. Without an inflow of money, the system inevitably collapses (Preston-Whyte 1991). From the perspective of individual households and people, this trajectory is observed in continuous calls made on depleted savings, the sale of household assets such as stock and agricultural equipment, and the inability to maintain income generating family assets such as cars and trucks. The cessation of education for children is, perhaps, the worst of these negative effects in terms of the future. Such situations are common to many rural communities in developing countries. Where AIDS is prevalent, as it is in Okhahlamba, the situation is exacerbated by increasing ill health heath which leads to the loss of employment and the ability of people to generate even small and intermittent amounts of income. In addition, neighbors and kin have often to borrow and seek contributions to the ever mounting costs of medication, and the final cost of funerals, both those in ones own family and in those of neighboring households, are generally draining. Households which were made vulnerable by poverty, are rendered virtually unsustainable by the succession of illness and deaths that AIDS brings in its wake. In the language of the poverty and development discourse, these households can hardly survive "shock" after "shock", each of which increases their inability to cope and makes them more and more vulnerable to dissolution (May 2000).

III. Household level response to AIDS

There have, not surprisingly, been 'knock-on' effects on other aspects of social life and, here again, AIDS has often served to exacerbate existing vulnerabilities and hasten the major social changes that have been taking place in rural areas for nearly a century. A striking example lies in the field of family and household structure and composition. It seems likely, indeed, that the very shape and functioning of families and the conceptualization of 'family' may be changing in order not only to accommodate to new realities, but also so that 'social safety nets' develop for people who have been hardest hit by the successive shocks of poverty, underdevelopment and now AIDS. There are a growing number of what are sometimes referred to as 'complex' households because they gather under one roof a wide range of people, often spanning three and even four generations linked by ties of affinity as well as blood affinity. Attached to the household may be increasingly distant kin and even friends who are paying their way in rent to the household head. These large units contrast sharply to households that are paired down to a minimum of one adult (who is often a pensioner) and a number of orphaned children of different ages and parentage. Such domestic units are spawned by need and, in the case of those that cohere around a pensioner, respond to state welfare provisions, however small.

In the specific case of children orphaned by AIDS, a good deal of speculation and doomsday predictions claimed that the epidemic would spawn a completely new kind of domestic group - the child headed family. This has not materialized in KwaZulu-Natal. It appears as if relatively few households in Okhahlamba (and in other areas of KwaZulu-Natal) take this form despite the growing number of adult deaths. The most usual reaction to orphanhood has been for children to be dispersed among relatives and close friends. Sometimes such children are fostered either formally or informally and the life stories we are collecting tell of frequent moves between households that are temporarily able to sustain them. In many cases they have been gathered under the care of an ageing grandmother or sometimes a widowed father or grandfather. Thus in instances where young children appear to be living on their own, they are, in fact under the eye of nearby relatives or senior community members. Some traditional leaders claim to be supporting and caring for numerous orphans. In summary, there is usually a community safety around families of orphaned children. This is not to say, however, that the children do not suffer both emotionally and in terms of day to day care and support as a result of the death of parents. Nor does it mean that a time will not come when the number of orphans outgrows the ability and social resources of kin and local communities to sustain and protect them. It is here that innovative development alternatives need to be considered.

IV. Local level Understandings of HIV and AIDS, stigma and ostracism

The above are the 'hard facts' that characterize the outward form of the epidemic. They have been substantiated in numerous socio-economic surveys and by supportive qualitative research. What is more difficult to capture is the emotional toll taken on the population at large and on particular individuals, including children. One of its manifestations is related to the fear and uncertainty that has resulted from the growth in the visibility of HIV/AIDS. What is this new disease? What really causes the symptoms diagnosed by Western medicine as AIDS? These concerns are reflected in the plethora of alternative understandings of the nature and cause of HIV and AIDS which characterize local discourses around health and illness in many South African communities. In Okhahlamba these explanations center on a strong belief in the potency of witchcraft or sorcery to cause illness and misfortune. Witchcraft is said to be directed at the unwary by maliciously inclined neighbors who plant potent poisons or Idliso in their path. The actions of witches are thought to be motivated by rivalry, jealously and anger. Since this is the topic of another paper in this collection, suffice to point out here that Western medical explanations prove insufficient and unconvincing in the face of the anxiety and fear that result from the contemplation of increasing AIDS morbidity and death in the community. It is this hiatus that is filled by explanations made in terms of witchcraft. Even if, furthermore, the popular verdict is that HIV/AIDS is the reason for a particular person's symptoms, the corollary is that the infection was directed at that person by the malevolence of someone close to her or him (Ashforth 2002; 2004; Leclerc-Madlala 2002; Niehaus 1997; Stadler 2003; Reynolds Whyte 2002). This analysis draws on a much earlier explanatory framework developed by Evans-Pritchard (1937) in reference to another African situation where witchcraft both provided an explanation for 'unexpected events'. As important as explaining illness, this explanation suggested concrete steps to ameliorate the threat witchcraft poses to the individual. Until recently Western science could offer no hope of treatment. Even with the start to the long awaited government roll-out of ARV treatment, few people can realistically hope to access assistance from the Western health sector. Instead recourse is made to both the explanations and treatments offered by traditional healers. In the case study that follows witchcraft surfaced to explain a number of individual actions, as well the explanation proffered for the recent death of a prominent householder. The case material to which we now turn also raises the issue of the attitudes of the community to those who are HIV/AIDS infected and affected.

One cannot refer to AIDS in South Africa (and indeed globally) without recognizing that its overall impact on individuals and communities is exacerbated by the fact that both the HIV infected and those suffering from AIDS are stigmatized and often rejected by those around them (Parker and Aggleton 2003). This is illustrated by the objections of the group of children who call themselves the "Leaders of Tomorrow" to being referred to as orphans. In the context of rampant AIDS, the designation 'Orphan' is invariably taken to mean that one parent or both parents have died of the disease. This targets the family publicly and the children feel that the opprobrium extends to them. Fear, strong emotions and denial pervade the lives of the infected and affected. The roots of stigma are complex and the subject of considerable research. Suffice here to note that in working with the infected and affected either as researchers are in a development capacity, it is vital, not only to be aware of the impact both of stigma itself and also of the sensibilities of those affected by AIDS.

Part Two: The Story of the Leaders of Tomorrow

Before joining our research team the first author of this paper, Zanele Mchunu was employed by a large development agency (World Vision, South Africa) which was active in the vicinity of Okhahlamba. Her task was to initiate and develop micro-enterprise groups among local youth. She had been working with one such group for some time, but had encountered difficulty in maintaining the original enthusiasm displayed by the group. This is the story of the insights she developed as a result of combining ethnographic research and development practice and how these insights laid the foundation for the recovery of the group. It is also, however, the story of fairly typical South African rural children who live in the shadow of AIDS. The families from which the children come are poor and although not all are orphans and we do not know who or how many are themselves HIV positive, all have experienced AIDS related illness and death in their extended families or among neighbors. Despite this, it is to their enthusiasm and dedication the group's long term success is due.

We have chosen to adopt the somewhat unusual strategy of writing this section of the paper in the first person. This because it is based directly on the Zanele Mchunu's ethnographic field notes and analysis, as well as upon our subsequent combined reflections on the events that are recounted. After joining our team she participated in an NIH funded training and mentoring course designed to develop ethnographic skills in the context of HIV /AIDS research. This targeted not only to researchers, but persons active in community based organizations and development agencies. In the case of the latter the ethnographic skills appropriate to the contexts of their work were emphasized rather than the full gamut of in depth theoretical ethnography. These included developing in them an acute consciousness of the role of participant observer (or observing participant), listening to what community members had to say and opening the way for them to take the initiative in developing their own ideas for the future. Subsequently Zanele Mchunu and the rest of our local research team visited the children in their homes, met their families and encouraged them to chat about their life, major concerns and their hopes for the future. The team participated also in community affairs and on one occasion took a number of children to the coast for a holiday. During this time the children developed a play about their lives in Okhahlamba. In this the impact of HIV and AIDS loomed large. Finally the team encouraged the children to tell their own stories and these have proved invaluable in understanding the dynamics and constraints of local life.

I. How the project began ( As recounted by Zanele Mchunu)

When I was employed by World Vision, I was given the job of working as a development facilitator with the youth and especially with orphans because it appeared that the number of children who had lost either one or both parents to AIDS was growing dramatically in Okhahlamba. At the time the directors of World Vision were not persuaded that a developed research base was important for successful development work - they wanted to concentrate on developing interventions with orphans following existing development models. I now see that to develop good and lasting interventions one needs to do research in order to understand the community and the social context in which its members live. I try to illustrate this below.

II. Who are the "Leaders of Tomorrow"?

They are a group of some 31 children who are between the ages of 15 and 25 and who are either orphans or who are vulnerable in some way. When we began this project I decided to make lists of all the orphans in a number of districts. It turned out that the lists grew and grew and seemed to have some children on them whose parents had not died. When I asked why their names were there, the children explained that they all had the same problems - their families were poor, and because their parents had to earn money, they were often away in town. So the children had to look after themselves and their younger siblings. It was then that we realized that it was not only AIDS that was affecting them. They were already poor, and some were living alone at home and experiencing many of the same, problems as orphans. The problem of school fees is a good example.

So with World Vision I decided that we would work with all the children who wanted to join the group. In fact our group has been so successful that lots of children, both orphans and non-orphans have joined. This is very important to the ' real' AIDS orphans as they do not like being stigmatized as 'orphans' and set aside from other children and people. Like Nkozi Johnson they said "We are just the same as ordinary children" ..."there is no difference - we are all poor and need to get money so we can help feed our families and get an education".

III. What did the group want to achieve and how did they go about it?

It seemed to take a long time for the children to decide what they could do to earn this money. In fact they had some good ideas but I made the mistake of not realizing this at first. Eventually, however they decided that they would engage in two income generating projects - keeping chickens and gardening. We were lucky that some people in the local community who had land were willing to set a small piece aside for the children to use for setting up their projects. Here I learned an important lesson. Local people have lots of sympathy and goodwill for children and, if they can, many try to help. In this case a woman whose family was not using all their land offered to let the children have two large fields for their gardens. The fields were near the road and that made it easy for the children to reach them when they had finished school. They could also rely on her and her family to provide a place for them to keep their implements safely. Luckily there was enough land to put up a chicken coop as well as lay out two big fields. Because her homestead was close the chickens were also safe from thieves during the night. But she was limited in the financial help she could provide and so were the other members of the adult committee I initially set up to help with the project. This is where funding was necessary and I helped to raise this from World Vision. We anticipated that the project would become self-sustaining and pay for its own costs, but this was difficult, especially at first. This emphasizes the point that projects like these need to develop long-term relationships with potential funders and learn to report to them regularly so that they continue to help.

III. Beginning on the wrong foot : the problems I had and where I went wrong

At first I went about things in the wrong way. I got some of the adults in the area and other important people involved on a management committee. I did not ask the children themselves what they needed or what THEY wanted to do. The adults formed a committee structure and made suggestions. Although they did not say so openly the children were very angry and did not want to co-operate at all. Many stopped coming to meetings and when they did come, they said nothing - some stayed outside and just peered in the doors or, if they sat in the meeting, they just looked down at their laps. This was because as an adult they believed I should be respected and not challenged. To quote their own words " ...if you are young, you do not argue or disagree with adult ideas." However the longer I listened to them and took them seriously the more the children helped me to understand them and their feelings. Eventually I decided to ask them what they thought and what they were so cross about. At first they did not want to tell me - but at last they did. They wanted to be consulted, and they had lots of ideas of their own. Some of these were the same as those of the adults, but the children needed to feel they owned and ran the project. Even when the project was up and running, most of the decisions were at first made by the adult committee. At one point, without any explanation to the children, they simply moved the site of the gardens and the chicken coop. As I will explain later they had good reasons, but they did not think they needed to take the children into their confidence. The result was that many of the group stopped coming to the garden and seemed to loose interest in the projects. It was then that they nearly folded.

Finally I decided to facilitate a meeting with the children and the adults together, to find a way forward. First, I presented the children's point of view and this encouraged them to come out with other questions about running of the project that were worrying them - Like who was handling the money since the chickens were moved and the children had stopped participating in the project, and how many chickens had been sold? How many chickens were left? The figures did not balance. The lady who was then looking after the chicken explained that some had been sold on credit. The children were very cross, and this time they did not keep quiet. They asked for receipts. In fact the lady was asked to go away and bring the receipts back to them. Eventually she paid the money back as there were no receipts.

As time went on and it was time to harvest the crops the committee did not think to tell the children to do this. Of course the children knew quite well that the crops were ready to be harvested, but by then, they expected the committee to give them the go-ahead. This did not happen, and the crops were nearly spoiled. The committee members were very angry with the children. But the children were also angry and felt they had been misjudged. In fact the project nearly came to an end the second time!

Things got a lot better when I learned how to listen to the children to find out their problems and what they thought should and could be done. When I did this they became really interested in the project and excited about it. I soon found that they could do amazing things and that they already had many skills which they could use and also teach to other children. For instance, although at first the children seemed sad and withdrawn, I found out later that they loved doing creative things and that this made them very happy and excited. They then co-operated willingly with each other and made every effort to attend meetings. This was when they decided to name themselves "The Leaders of Tomorrow" as they had also begun to think and talk about the future and the place they might have in it. They became convinced that they could do well despite being poor and surrounded by AIDS.

V. Choosing a name: breaking with convention again

When we began the chicken and garden project I held the meetings for the children at one of the local schools. When many of the children stopped participating in the project meetings, I asked their teacher to let me have time to talk to them in school. She agreed and I asked why they were no longer interested in the project? They just kept quiet and did not say anything, this time out of respect for me. So I decided to ask them to write their reasons anonymously on pieces of paper. One of the main reasons they gave was that they did not like being branded as orphans. They said "We do not want to be called orphans". These words showed me that there was a lot of stigma in their community. In fact I realized that why some of them came late was because they had been waiting for all the other children to leave the school, before coming to our meeting. Others came only as seldom as once a month and now I understood why. They did not like being set aside from other children and felt stigmatized. So I asked them to give themselves a name. Many ordinary names were suggested, but finally they all agreed to use the name" Leaders of Tomorrow". They explained that it was a good name, as they had never heard of orphans and children running projects before. So they would be "the Leaders"- the first ones to do so!

The message I got from these experiences is that orphans and other children we think of as children are able to think for themselves. They do not always need adults to give them ideas on how to solve their problems. Where they do need advice is in carrying out their ideas and sometimes also in finding ways to get support for what they want to do. Sometimes funds come from development projects but it is also important, for children to learn how to raise money for themselves and then how to keep track of it. They need lessons in book keeping and this is a skill that they can then use in lots of situations that have nothing to do with the group. They also need advice on how to keep to routines. For instance the chickens needed to be fed regularly and this meant ensuring that feed was always available and they did not run out so the chickens would die. This nearly happened on one occasion!

VI. Competing responsibilities and priorities

a) A multitude of tasks to be done

As time went on and even when we had solved the problem of consulting the children I found that they were not attending meetings as regularly as before. Although some missed only now and then, others came only once in two months. I got very disheartened and even cross with them. But then, by being in the community with them and visiting them in their homes I saw some of the reasons why. The were not just lazy and trying to avoid the hard work like weeding and watering the garden and feeding the chickens - many had such a lot to do at home - cleaning and looking after younger siblings or running errands for older people. Even bathing was a problem and they had no running water. Many had to walk long distances to the river to get water first. What was so easy for me to do, took them hard work and a long time to do. Others had to walk for over an hour to get to where we met, and where the projects were being run. Even to get to school each day they had to walk a long way, sometimes over an hour. At first, however, they were shy to tell me these things - again they just looked down when I asked them and said nothing. The stories they wrote the research team also helped to show us how many responsibilities children have and how long it takes to fulfill them. As we went on getting to know the children they began to voluntarily update us on their lives and what was happening in them. Then we could understand their problems. But we could also celebrate their successes with them!

b) School fees versus food

Far worse for the children than balancing the competing demands on their time is the need to decide between the priorities that compete for the funds available in the household. The starkest choice is between food and school fees. In South Africa there is no free state schooling as there is in many countries of the first world, and also in a few other African countries. Thus although education is highly valued, for many families school fees represent a formidable burden each year and many, many children fall out of school simply because their parents or guardians cannot afford to meet both the fees themselves, but also the associated costs of books and uniforms. Children who have to discontinue their education prematurely are seriously disadvantaged in the market place, and many feel this as a really concrete form of personal loss. In the case of orphans, their regret at not having been able to finish school always reminds them vividly of the time when their parents died. But it is often worse than this. They may be put in the position of wanting to use money given to then for food toward school fees. Let me give you an example. One day when we were leaving for a group expedition, we met a young girl we knew well along the way to the bus. Her parents were both dead and she told us she could not go with us because she was going to the school to pay her school fees. Her migrant brother had just sent her money for food both for herself and her siblings. Because her school principal was demanding the fees, and refused to release her results unless she paid, she was rushing to do so using some of the money her brother had sent home. But she was very upset. She could not meet our eyes, but just looked down at the ground. I think she was ashamed, but she was caught between the family's needs and her school principal. It was a very heavy burden for so young a person to have to carry.

This is not an isolated case. Other school principles have been reported to the adult committee many times for bulling children to pay fees. The committee was continuously begging me to intercede with the principles on behalf of the orphans. I could see both sides of the problem. The principals are not given sufficient funding to run their schools and have to compensate by collecting the fees as best they can. This is why they are so strict. Some are, however, willing to allow orphans to pay slowly when, and as they can. In some cases, however, they complain that the marks gained by the children do not warrant them being given this chance. Again the problem is that some children have so many responsibilities and worries that they cannot concentrate on their studies. Studying for exams is often a real challenge especially if they have to find work to make some money to support their siblings.

VII. Culture and Beliefs

The other huge challenge that I faced in the project was with what we call 'culture'. People in our area really value the traditions of their forefathers but this often creates unexpected problems. In fact it was culture that lay behind the decision made by the adult committee to move the garden. It turned out that the head of the homestead where the gardens were first planted died suddenly. This meant that the whole family went into deep mourning and had to perform a series of traditional ceremonies to cleanse themselves of the pollution that death is thought to bring upon the relatives of the deceased. They have to slaughter a goat or a beast. Sometimes if the person died and was buried away from home, in hospital for instance, the relatives have to visit the grave to collect his or her spirit and bring it home. They take a special branch and carry it to the grave and then home. Along the way they talk to the spirit telling it what they are doing. Once home they put the branch in the rafters and feel satisfied that that the deceased is with them. This kind of ceremony and a number of others that are obligatory can take up much of the time and energy of the relatives and, in any case, they cannot go around and do things freely until all the ceremonies are complete - usually in not less that a year. There must also be quietness and respect in the homestead. This was why the adult committee decided that it was better to move the gardens and the children. BUT they did not explain this to the children. Had they done so, the children would have understood and not been so annoyed. They all know perfectly well what restrictions mourning puts on people and particularly the wife of a man who has died. They have lived through death and mourning in their families a number of times.

It is apparently little things like not making a formal explanation that can disrupt and endanger a whole process!

VIII. Poison (idliso) and witchcraft

Also connected with culture is the problem of witchcraft which is the fear that one of the neighbors is killing people by sending diseases like TB and AIDS to them. Most people in the area believe that witchcraft exists, and is often the cause of their illnesses and misfortune. Witches are usually thought to be people who you know, but who you suspect of hating you and wanting to harm you. The other day I gave a lift home to the woman whose husband agreed to give the land to the children to run their money-making projects. As we were driving along she asked me specifically not to drop her at her own home, but to leave her on the road well before we reached it. Thinking that this might have something to do with not being seen publicly because she is in mourning for her husband who had just died, I agreed. However she corrected me saying her wish to be so far from home had nothing to do with respect; it is because she did not want to pass too close to her neighbors. She had, in fact, been telling me in the car that after her husband's death she consulted a diviner (traditional healer or sangoma) who told her that he had been bewitched by one of their neighbors. She was simply trying to avoid going close to the home of the neighbor who might fit this description. It was better to be seen on the road when she was in mourning than to pass too close to that neighbor.

The woman went on to explain that witches kill the people against whom they have a grudge by burying poison in the road so that if they walk that way and step over it, it can enter their system (Ngubane 1977). For many years in Okhahlamba when people have been diagnosed with TB, it has often been put down to witchcraft. Now that AIDS is also prevalent, the same explanation is often given. If one suspects that an illness is caused by witchcraft, and especially if one cannot explain how one caught it, it is decided to go to a diviner to find out. He or she may confirm ones fears and although no direct fingers are usually pointed, these healers usually indicate the general direction that the infection may have come from. We often think this is bad but it does provide people with an explanation, and in the case of AIDS, it may be preferable to a death sentence as the diviner also usually offers some advice as to how relatives of the deceased may protect themselves from the same problem.

So these are all things which are on my mind when I think of my work with the children in our area. One other thing I remember vividly is the time the team arranged an outing to the beach in Durban. We stayed for quite a while, and the children played in the sea (which many had never seen before) and they composed and acted in a play. They choose to write about AIDS and how people in rural areas try and get medical treatment from all sorts of places - including the diviners (izangoma). They were wonderful actors and actresses - maybe we will see some on TV one day!

Concluding Remarks

The text of our case study was taken from a report which Zanele Mchunu wrote on her research and intervention work with children in Okhahlamba. It serves in a vivid manner to bear out many of the points that are being made by social scientists studying the repercussions of the AIDS epidemic in South Africa. It is important also because it allows the voices of some of the children living through, and affected by, AIDS to be heard not only by researchers and development agencies, but in the international arena. We wish to thank the organizers of the conference at which the paper was originally presented for the opportunity to make these often neglected voices heard.


Zanele Mchunu is a researcher at HIVAN, the University based Centre for HIV/AIDS Networking (HIVAN) in Durban. She has served as Orphan Project facilitator for the uThukela Child Survival Project. She is also responsible for coordinating the activities of the Home Based Care and the Community Health Workers. See also http://www.hivan.org.za/campussupport/sondelajuly/story1eng.asp for a personal story.

Eleanor Preston-Whyte (Ph.D., University of Natal 1969) is a respected researcher in the field of Social Anthropology, with extensive experience in co-ordinating individual research projects, as well as faculty and central academic research structures. She currently holds a research professorship in the School of Development Studies at the University of KwaZulu-Natal. Together with Professor H. M. Coovadia of the University of KwaZulu-Natal, she also heads HIVAN. Throughout her research career, Professor Preston-Whyte has been instrumental in advancing the cause of multidisciplinary research, and particularly that in the field of the bio-medical and social sciences. Professor Preston-Whyte has published widely in her own field of Social Anthropology, with her specialist subjects spanning the Dynamics of Family and Kinship Structures, Adolescent Sexuality and Reproductive Health, and more recently, HIV/AIDS and Population Studies. Over the years, she has served on numerous national and international research and funding bodies, resulting in the development of a personal wide network of colleagues and potential partners upon whom HIVAN draws for its work. Besides its research and networking functions, HIVAN is committed to developing research capacity in local South African researchers. Professor Preston-Whyte leads this actively and personally mentors a number of young researchers.

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NOTES

1. This paper was earlier presented at the "Reframing Infectious Disease" conference, Institute for the Humanities, University of Michigan, December 2-4, 2004. The Editors thank Institute Director Danny Herwitz for his assistance.

2. We refer here to our research team in Okhahlamba which is made up of Dr Patti Henderson, Pumzile Ndlovu as well as Zanele Mchunu. We are grateful for support of the team both during fieldwork and in the conceptualization of this paper. The research intervention work reported on here is funded by the National Institute of Health, Rockefeller Foundation, the Atlantic Philanthropies, the Carnegie Corporation and World Vision South Africa.

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