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We didn’t apply to be AIDS orphans

Stigmatised, exploited and ignored, orphaned children have long been the invisible victims of the HIV/AIDS pandemic. Now, researchers have drawn out the experiences of Zambian orphans with stories, interviews and art.

Thirteen-year-old Cecelia* is a modern-day Cinderella. She rises at dawn each day to draw water to bathe her three step-siblings. She then lights the fire and prepares their breakfast before they set off for school, leaving her behind to wash clothes and toil in the fields.

Here the similarity to the fairy tale comes to an end. For unlike Cinderella, Cecelia has no fairy godmother – she will never go to the ball and it is unlikely that a Prince Charming will rescue her.

Cecelia, from Chilalantambo village in Zambia's Southern Province, is an AIDS orphan: one of some 800,000 Zambian children – 18 per cent of all children under the age of 15 – who have lost one or both of their parents to AIDS. One in three households either care for or support at least one orphan, and 90 per cent of these households live in poverty.

The scale of the AIDS pandemic means that few Zambian children are untouched. Roughly 19 per cent of the population is believed to be HIV positive. On average, 300 Zambians die from AIDS every day.

But because of widespread poverty, the capacity of the extended family – Africa's traditional 'safety net' – to cope with AIDS orphans is strained to breaking point.

Orphans are often stigmatised and blamed by relatives and guardians: for the assumed promiscuity of their parents, for using up the little money that there is, and for being themselves potentially infected. They are abused verbally, physically and sexually. And for some orphans, living rough on the streets may be a safer option.

One of the most serious consequences of stigma is that it impedes children's – particularly girls' – access to education. If money is limited, orphans are withdrawn from school first. Girls may be taken in by relatives in exchange for household work, caring for other sick relatives or agricultural labour.

These girls in turn may be forced into sex work – which puts them at extreme risk of HIV infection – encouraged by fathers or guardians to earn money for food. It's a vicious, poverty-driven cycle and researchers are now realising that children – because of their youth and economic dependence – are especially vulnerable to AIDS stigma.

A Zambian nongovernmental organisation, Kara Counselling, and the ZAMBART Research Project, have investigated the experiences of 80 Zambian children – 45 of them AIDS orphans – by using stories, drawing, drama, play and interviews. All the children are residents of Kamwala and Misisi shanty towns in Lusaka, and a town and small village – Choma and Chilalantambo – in Southern Province.

Their research confirms that orphaned children are blamed by adults and children alike and that stigma seriously affects their well-being. Orphans reported being given the heaviest workload and working harder than other children. Some do not eat with the family, existing on leftovers. Others are made to do chores at meal time and go hungry.

Girls are often given more chores and asked to carry heavier loads than boys. In a drawing a boy depicts a girl staggering under the weight of a water container bigger than herself: "This is child abuse," his caption states..

Some orphaned girls are married off to relieve struggling families. Where a girl is the eldest sibling and responsible for younger children, she may be drawn into selling or exchanging sex for money or food. Some of the older girls in the study dramatised this by portraying a father sending his daughters out at night to "find money".

The study reveals that orphans not attending school are exceptionally deprived. These children are mostly without one or both parents and though most have a home, they spend much of the day on their own – isolated and neglected.

This lack of adult affirmation, researchers believe, has a huge impact on children's self-esteem and confidence, and its loss rendered some children invisible. This was discovered during a 'name game', where children stand up to introduce themselves. For school-deprived orphans, this simple request seemed insurmountable – as if no one had even asked them before who they were.

Unfortunately, school is not always a safe haven. AIDS orphans, especially those who are HIV positive, may be shunned by classmates. Robert recounts how he was treated badly by friends who "didn't want to play with me because I had TB … they thought they might catch the disease from me."

Ten-year-old Precious confessed that her teacher, knowing she is HIV positive, sometimes turns her away from school. Chilufya, 12, told researchers that although she is not ill, her teacher chased her from school because she had "sores on her body".

One poignant finding is that very few of the children had ever talked about their bereavement despite having nursed their parents through sickness until their death. The lack of opportunities to discuss their loss led many to feel responsible for their parents' death, or to feel that they were being punished for it.

"I don't know what killed my parents and people at home don't even want me to ask them about the death of my parents," said 11-year-old Mildred.

A shocking revelation is that five of the 80 children considered committing suicide – either because they no longer wish to live or because they want to join their deceased parent(s). The interviews provided the first opportunity for these children to talk to an adult about their feelings.

Fortunately, the study also reveals that many AIDS orphans are exceptionally resilient, removing themselves from situations of abuse and seeking help when they can. They also have a remarkable solidarity with one another. Bernard, 13, drew a picture of his closest friend and wrote, "When he is beaten I go and comfort him."

Some children did report acts of kindness. Grayson, 15, spoke affectionately about two girls his family has welcomed: "We treat them like ourselves who have both parents."

Kara Counselling and ZAMBART hope the research, which was funded by Positive Action – a programme run by the pharmaceutical giant GlaxoSmithKline – through the US-Based International Centre for Research on Women, will help those battling to end the stigma against AIDS orphans, whose numbers are predicted to rise to 1.5 million by 2010.

Behind the statistics, there are glimmers of hope: experts say if Zambia can follow Kenya's example and make free education a reality, many of the causes and consequences of stigma would be tackled. Although primary school fees in Zambia were abolished in 2002, in practice many schools still charge for uniforms and equipment.

And there is the wisdom of the orphans themselves. Asked what could be done about the mistreatment of AIDS orphans in his Lusaka shanty compound, Thomas, 12, replied: "Advise people not to mistreat them. They didn't apply to become orphans."

*All children's names used are pseudonyms

Dr Virginia Bond is a social anthropologist with the ZAMBART Project. Sue Clay works with Kara Counselling.

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Panos London

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