Children and AIDS

Dr Anne Bayley writes about the precarious situation of children in AIDS infected Africa, what can be done to help them, and the wider implications for all of us


This article was first published in the Spring 2008 issue of Chrism. The author's profile below is from the same date

Anne Bayley is a doctor who worked in a church hospital in Northern Rhodesia soon after qualifying. Later she trained as a surgeon, then worked for nineteen years in the Department of Surgery of the University of Zambia. There, in 1983, she began to recognise patients with AIDS in clinics and wards. Over the next two years she saw an exponential rise in patient numbers and watched with horror as HIV infections spread around East and Central Africa. In 1990 she left Lusaka and surgery, having been accepted for ordination training. She was ordained deacon in the Church of England in 1991 and priest in 1994. She wrote a book on AIDS in developing countries entitled ‘Our New Humanity’ for SPCK’s Study Guide series (1996) and has written other pieces on AIDS. Since 1999 she has returned to Africa for two to four months each year, to encourage responses to AIDS at community level in the Anglican Dioceses of Southern and Northern Malawi and Eastern Zambia.

© Guild of St Raphael

Against Very Heavy Odds

If ‘healing’ means wholeness of body, mind and spirit, then most African children in countries with AIDS don’t qualify, the odds are stacked so heavily against them. In 2004, in rural Zambia, I helped lead a workshop for adult Christians on relationships between husbands and wives (‘family life’) in the context of HIV infection. This workshop was held in a grass-fenced enclosure that was a temporary ‘church’. All day long hordes of noisy children rampaged around outside, but when we started role-plays the noise lessened, as small heads poked through the grass fence to watch dramas unfold. These children, I was told, mostly had somewhere to sleep, and some were in school. Otherwise they appeared to be excluded from family and society, owing allegiance mainly to the street group, surviving uncared-for, perhaps unloved, and recognised only as a nuisance to the community where they lived.

Children have a remarkably low profile in public life, although children under the age of fifteen represent around 45% of the populations of developing countries in sub-Saharan Africa. Children are as invisible in many societies now, as women used to be everywhere, before the twentieth-century gender revolution. Ministries of Youth and Gender or Culture or Sport exist in some countries, but I do not know of any ministry devoted only to children. Instead children’s needs are divided-up haphazardly between ‘health’, ‘education’, ‘food and agriculture’ and ‘law’, while no-one has responsibility for listening to what children have to say about their own welfare, or to their views about society. Just as important, no-one has authority to demand priority for children when funds are apportioned in national budgets. Yet adults are shaped—in body, mind, emotions and spirit—by the food they eat, the health care they receive, and their relational, educational and spiritual experiences from birth until maturity. Those first fifteen years are literally crucial to the wellbeing of individuals and societies, yet their oversight may be piecemeal and casual, based on unexamined presuppositions or fears.

Matters are little better in the Churches, for many Christians do not value children for what they are now, or respect their early relationships to God. True, we provide Christian education and ‘formation’ for adult life, but we don’t pay attention to what children have to offer to adults, as role models for discipleship—unlike Jesus, who held a small child and told his shocked disciples that they should ‘become like little children’, in order to enter his Father’s kingdom! Hans Urs von Balthasar’s insight that Jesus ‘is a child forever’, indeed the prototype for childhood, would sound strange to many Christians.

A fragile situation

Even without AIDS, most African children would be in a fragile situation. They belong to a continent where almost half the total population live in extreme poverty, on less than 1 US $ per day, and another 30% live in ‘moderate’ poverty, on between 1 & 2 US $ per day (Jeffrey Sachs, 2005). Farming no longer yields enough food, because soil is exhausted and eroding away, farmers cannot afford to buy fertilisers or seeds or cannot obtain them at the right time, and rainfall is becoming unpredictable (? climate change). As harvests fail some children starve to death and others’ growth is stunted: twelve or fifteen year-olds look four or five years too young. Preventable or treatable diseases (malaria, pneumonia, diarrhoea) kill many children before the age of five, and though primary education may be free and universal in theory, in practice it is often inaccessible or of poor quality. The chances of progressing to secondary education—or even to university—are rather small.

Children have even less status in society than women, and hardly anyone is interested in their ideas or feelings, because ‘culture’ values the wisdom of age more than the visions of youth—and obedience to unquestioned ‘custom’ above experiment or innovation. Indeed, persons who are innovative or excel in any sphere may be suspected of witchcraft, accused—and if thought guilty, punished for being ‘different’.

Impacts of HIV infection and AIDS on children in Africa

AIDS reached Africa about twenty-five years ago, changing lives of individuals, families, communities and whole regions in devastatingly inter-linked ways. Spread of HIV is mainly heterosexual or vertical (from parent to child, through mothers) or, occasionally, through contact with infected blood. In some countries 20% or more of adults are HIV-infected, while secondary (opportunist) infections are more numerous than in the West and nutrition is worse, leading to rapid progression to AIDS-defining illness and to early deaths. Antiretroviral drugs (ARVs) are available, but only to small numbers of people: death less than ten years from infection remains the norm.

AIDS has four major impacts on children:

Children infected with HIV

World wide, about 2.5 million children are living with HIV infection—and 90% of them live in Africa. Most were infected at birth from an HIV-positive mother or during breast-feeding. While a few are infected through contact with blood, older children usually acquire HIV through sexual abuse by infected adults. As young children have immature immune systems, AIDS develops more rapidly than in adults and children die more quickly. Although they respond well to ARVs, few children receive treatment because suitable drug formulations are not available, doctors lack appropriate experience, or (perhaps) children are not ‘high priority’, like health workers, teachers or politicians.

‘Amasiye’—orphans

Both parents are usually infected with HIV, so numbers of orphans have risen steeply, and are still rising. By 2004, a cumulative total of twelve million African children had lost one or both parents to AIDS, and that number is expected to reach eighteen million by 2010 (Report of the Global AIDS epidemic in 2004). In South Africa, where the epidemic is relatively ‘young’, the proportion of orphans is expected to rise from 12% of all children in 2003 to 18% of all children by 2010.

In Lusaka, in 1989, when teachers and doctors started to discuss the impact of AIDS on children, we couldn’t use the word ‘orphan’. ‘We don’t have orphans in Africa’, we were told, ‘the extended family cares for them’. This was indeed the case thirty years ago, but since the mid-1980s numbers have increased to historically unique levels, so that coping mechanisms of families and society are exhausted. In the past, orphans might be cared for by uncles and aunts, but today parents’ siblings often die of AIDS, too. A whole generation of children may live with one elderly grandparent who has no pension—and no fit adults to help her to grow food for ten or more grandchildren, or to enlarge her hut to accommodate them. However, in ten years’ time grandparents may be a lost species: orphans in 2015 may have no-one to care for them—if their potential grandparents died in 2000.

In 1989, we adopted a euphemism ‘children in distress’ to avoid the word ‘orphan’, mindful that ‘distress’ starts for children long before the first parent dies, and extends far beyond the obvious emotional and practical impacts of losing one or (usually) both parents. Nearly half of orphaned children stop going to school, because they are needed at home to care for dying parents or younger siblings. Children share the stigma associated with AIDS and (later) the additional stigma of being orphans: ‘amasiye’. If the man dies first, his widow may lose her home and property—as ‘custom’ over-rides new laws designed to protect her interests. When both parents die siblings are often separated to live with relatives in different towns; there are hardly any families that are not caring for ‘extras’, as a Zambian friend described the excess children in his own family. The temptation to treat these children differently from one’s own must be strong, and there is evidence that some orphans are used as unpaid servants—others are abused, physically, emotionally or sexually.

There is a dangerously pervasive myth, strongly entrenched, that sex with a virgin cures AIDS—while some traditional healers add that sex with a related child is especially efficacious! Children who are infected at or after birth usually die within two or three years, but those infected through sexual abuse survive several years, with stunted growth, chronically ill. Untreated, they do not mature at puberty.

The early deaths of parents deprive young people of teaching, values and role models that normally shape socialisation and adult behaviour. Moreover, ‘culture’ dictates that parents shouldn’t teach their own children about puberty and sexual relationships but delegate the task to relatives. Today, when urbanisation, AIDS deaths and work away from home have disrupted most extended families, many youngsters do not receive accurate teaching at all. Sexual health clinics are geared to adult’s needs and may subject young clients to accusatory questioning, so young people are unlikely to visit them for advice or access to condoms, though they do value—and use—‘youth friendly’ clinics, where these are provided.

Perils of adolescence

In general, sex is a taboo subject in society, partly because indigenous languages may have no acceptable or ‘neutral’ terms for sexual organs or acts; people have to use what would be ‘four letter’ words in English—which inhibits discussion. Ambivalence about ‘sex’ is common, too, with uncertainty about whether sexuality is God-given—or necessary but basically evil. When a Malawian woman theologian told clergy that ‘Sex is God’s idea—and it’s a very good idea!’ there was a sharp intake of breath. At another workshop a question, ‘Do we thank God for the good gift of sex in marriage?’ elicited only embarrassed silence: no-one dared to say, ‘Yes’.

In this setting, it is not easy for adolescents to find a safe path through conflicting messages from ‘culture’ (‘women must obey men’ and ‘men are like bees, they must drink from many flowers!’), parental injunctions (‘do not disgrace us!’), Church teaching (‘condoms are always wrong’) and unexplained urges produced by rampant hormones. In Zambia, a group of young people, Christians and Moslems, wrote a workbook together, for their peers, about sex and relationships, from their respective faith perspectives. ‘Treasuring the Gift’ (of sexuality) is used successfully in youth groups by untrained leaders and has spread from Zambia to Malawi, but it is not yet widely known, or translated into indigenous languages.

Young girls are at special risk as around one quarter are tricked or forced into their first sexual encounter by an older man, who may already carry HIV. In any case girls begin having sex earlier than boys, while their sexual organs are immature and more susceptible to HIV infection than those of mature women. As a result, young women aged fifteen to nineteen are five or six times more likely to become HIV infected than males of the same age. World-wide, half of all new HIV infections occur between the ages of fifteen and twenty-four, at the rate of more than 6,000 a day.

Social, economic and regional impacts of AIDS

Orphans lack not only their own parents as role models, but there is an absolute shortage of adults in their communities, too, because so many have died. There are few community leaders, production costs rise, workplaces become unproductive and later fail, skills are not passed on or highly developed, buildings, equipment and roads are poorly maintained and land is farmed inefficiently.

Teachers die more quickly than they can be trained and health care staff are in short supply because they, too, die early, or are lured away from ill-paid and depressing work to industrialised countries offering superior pay and conditions of service. In heavily-affected countries life-expectancy at birth has declined by fifteen or more years, and is still dropping (e.g. to thirty-six years in Malawi), while historic improvements in child survival have gone into reverse. In these circumstances economies shrink so that employment opportunities, external investment and (finally) hope also shrink. It is not surprising that teenagers often seem apathetic or depressed, and when asked what interests them, look puzzled by the question.

Obstacles to healing

Children affected by AIDS need healing—for individuals, families, communities and for unhealthy social and economic structures. But there are obstacles to achieving wholeness, beginning with the sheer scale of the ‘orphan problem’. Families and communities struggle valiantly to cope, making physical survival and continuing schooling their priorities. Wider issues of emotional deprivation, spiritual hunger or hidden despair are either too demanding to consider, or get shelved because of the challenging behaviour of older orphans: I found it difficult to suppress anger at the evening-long rowdiness of street children in Zambia in 2004. But even ‘survival’ and continuing schooling are difficult to achieve, requiring more resources than are commonly available.

One conceptual difficulty is the value placed (by both ‘donors’ and ‘recipients’) on what is tangible—food, blankets, exercise books, footballs, clothing, and the relative neglect of what is intangible—listening, laughter, play, sharing information, working together at some mutually chosen project. Such activities might cost very little, except in time and attention, yet give comfort and strength to children in distress.

A group of young men and women in Eastern Zambia decided to visit several primary schools each week, to talk to and play with all children, whether orphaned or not. Games were designed to entertain, build confidence, encourage team-work, and allow children to express feelings by modelling ‘toys’ to give insights into their preoccupations and experiences. After a year the workers were confident that the experiment was worthwhile, because children’s behaviour had improved and they talked more openly about their experiences—which included a degree of sexual harassment for about half of orphans. In end-of-year examinations, children at the ‘intervention’ schools performed better than their peers at ‘non-intervention’ (but otherwise similar) schools in the town. This project is continuing.

Healing stigma and a division between north and south

Since 1997, in industrial countries, treatment of HIV-infected persons with ARVs has turned AIDS into a manageable chronic condition, compatible with healthy life, work and even with giving birth to uninfected children. Until recently the costs and complexity of treatment were thought to rule out general use in Africa, while some cynics doubted if Africans could ‘adhere’ to instructions! But since 2002 treatment programs in Africa (mostly run by Médecins sans Frontières, MSF) have shown that Africans take tablets as well as or better than Western patients, and respond in the same way, by rising from their death-beds to regain health and return to work. Reductions in prices of drugs still under patent, and manufacture of cheap but active generic copies, have allowed these developments.

In September 2003 the Director-General of the World Health Organisation and the Executive Director of UNAIDS declared lack of treatment for HIV infections in low and middle-income countries to be a global public health emergency and launched the ‘3 by 5’ initiative. They appealed to the global community to provide funds to get three million people onto ARVs by the end of 2005, as an interim target on the way to universal access to drugs.

It has not happened. Justin Malewezi, who oversees AIDS work in the Government of Malawi, commented wryly in 2005 that the tsunami generated large sums of donated money in a few weeks, in response to a disaster that killed 150,000, yet the same number of people die of AIDS in Africa every month, unnoticed.

The best (and most moral) course would be to vastly extend access to free ARVs, so that infected parents and children could receive treatment, regain health, and survive to independence. But first stigma must be reduced, for voluntary counselling and testing (VCT) is essential before treatment, and few people are willing to be tested until AIDS is an ‘open secret’ in their communities. Canon Gideon Byamugisha, a Ugandan Anglican priest who has spoken openly about his own HIV infection for 10 years, formed (with other religious leaders) an organisation to promote openness, acceptance and hope. A video of his life and witness, called What can I do? is a powerful—and entertaining—‘medicine’ for the healing of community denial and discrimination against HIV-infected people.

‘What can we do’ for children living in AIDS-heavy countries?

First, we must raise the profile of children everywhere, and take seriously the decision of the 1990 World Summit for Children to give children ‘first call on our concerns—in good times and bad’. Campaigns to ‘make poverty history’ and to change unfair world trade rules are, slowly, changing attitudes in rich nations. Yet today, over forty years after the Organisation for Economic Co-operation and Development called for high-income countries to contribute at least 0.7% of gross national product to official development assistance—only five countries actually do so, and the USA is furthest (at just over 0.1%) from this target. Perhaps it is time for a third great campaign, to put children’s and young peoples’ concerns—and views—on the world map at last.

Second, we should listen intently to young people in the Churches, greatly widen the scope of our work for and with them, and develop a deeper ‘theology of childhood’. Young people should be part of every decision-making group in parishes and dioceses, expected to contribute worthwhile ideas. They should be trusted to take responsibility, not only for their own behaviour but also for leadership and practical projects to reduce impacts of AIDS. Young people become energetic, effective educators for peers and older people, after ‘behaviour change' programs (churches can and do run them!) have transformed their own sexual behaviour from promiscuity to abstinence—or ‘secondary virginity’ as some prefer to say. At a Youth Forum in Lusaka in 1999 a poster said: ‘Teach your kids: “virginity” is not a dirty word!’ Congregations could partly compensate for absent parents by holding training camps for young people before and during puberty, and by individual mentoring for youngsters, especially teenage boys who have no fathers. Men don’t ‘know everything‘, contrary to popular opinion!

Third, we must maintain pressure on international organisations and donors to fund ARVs for all patients who need them, now and for as long as necessary, maybe decades. Demands on infrastructure will be vast. It will be necessary to train and retain staff to expand clinics and for village ‘home based care’ teams to encourage diagnosis, overcome stigma, and provide transport (bicycles?) to VCT centres.

Huge numbers of teenagers in Africa finish secondary school (and more could do so if secondary schooling was expanded and free)—yet cannot get into tertiary education or find jobs. They hang around villages and townships, bored, apparently unwanted by adult society, with few means of finding identity—except casual sex. Instead, school leavers could be trained as clinic assistants (with prospects of going on to full nursing, laboratory or medical training for the most able), or as educators, village health workers, pre-school teachers, or agricultural assistants to promote soil conservation and agroforestry. This list of potential paid work could be extended. Organisation, money and training staff would be needed, in large quantities, but basic requirements—people to train and urgent need—already exist. Healing the serious wasting diseases of chronic unemployment, low self-esteem and depression could not be more important for the true wellbeing of Africa.

Anne Bayley wishes to thank Bishop James Tengatenga, Bishop of Southern Malawi, for his thoughtful comments on the text of this article.

© Guild of St Raphael