Secrets and lives
Janet Kyabita did not know her husband was HIV-positive until the doctor told her he was about to die. He had slipped into a coma and infections had reached his brain.
Her first reaction was anger; she wanted answers, but he was gone. "At least if he was alive I could have talked. I had nobody to ask questions," she says.
That was in June 1997. Julius, 48, was a director at the Institute of Adult and Continuing Education in Kampala, the capital of Uganda. Janet, 33, was a secondary teacher with 10 years' experience. She feared it wouldn't be long before she lost her job. "I was not open about it, but they knew my husband had died. And when they know, they tend to take you off (the staff)because they know you will fall ill and it's costly to support you."
It was another six months before she could bring herself to take the test for HIV, the virus that causes Aids. She tested positive. Her life was falling apart. She quit her job before she was pushed, not knowing how or if she would survive with two children, Juliet Amoli, now five, and Joe Eturu, now 11. Worse, she did not know if they were HIV-positive too.
"The young one might be sick," she says. "She has a skin rash and TB - they are obvious signs. Most HIV parents have HIV babies."
In a country with no social security system, she found a lifeline by joining the National Association of Children and Women living with Aids (Nacwola), which has 5,000 members nationally. She joined the association's training team, teaching other members how to prepare their children for their death, and making home visits to support members.
At the Kampala headquarters of Nacwola, which includes a training room the size of a garage, a meeting room and offices, Janet finds solace in working with women in the same position. "Everybody here is infected, so there's no pointing fingers," she says.
She trains people in how to make and use a memory book, a sort of DIY version of This is Your Life that has become an important tool for helping children and mothers come to terms with their fate.
Infected women are encouraged to write about their children, their family and special events in their life such as the day they were born so that when the mothers die, the children have some memories to latch on to, some account of their roots.
"The memory book helps us to disclose our (HIV) status to our children. There's a page where we write about our health. That's when we tell them we may not be around when they grow up," says Janet.
The book helps save important family history. "It gives the child a sense of belonging. They can see where they came from and keep precious memories, usually photographs. It's so they can remember us not only as HIV sufferers - maybe their mother was a dancer, used to enjoy swimming, something like this."
Mother and child also choose a foster parent - "the people who will be useful to you", someone the child feels free to talk to - who is then featured in the book. The mothers are also encouraged to write their will.
Janet has not been able to fill in the page about her HIV status yet. "It's not that simple," she says fearfully.
In the school holidays the Nacwola office holds seminars for children. They learn how HIVAids is spread, and how to protect themselves, and a few myths are debunked - such as the belief that you can catch it from sharing cups or that condoms offer 100 per cent protection.
"We also teach them assertiveness and how to care for their sick parents without getting infected," says Janet. "If their fear is to touch the vomit - you can catch it from vomit if you have cut your finger - we tell them to wear gloves when they clean it up."
Her role at Nacwola has helped her keep going in the face of demoralising setbacks. One attempt to get back into teaching failed at the second interview, when the head, who had initially been enthusiastic, noticed the scaly scars on her skin and sent her away. The head told Janet's friend who had recommended her: "How could you send me a sick woman?" Children also suffer discrimination if it is known that their mother or father is HIV-positive or has died of an Aids-related illness. This drives parents to secrecy, depriving the children of the extra psycho-social support they might need from their teachers. "There's still a high degree of stigma," says Janet. "Even the children will be stigmatised, so parents don't tell the school that they are sick."
Janet's story could be told a million times over, because the Aids problem in Uganda and most of sub-Saharan Africa is a social tragedy as great as any world war. Yet in most countries it is met with official silence, and the fear of social stigma means its impact on children and on teachers has barely been examined.
Of the 14 million people worldwide who have died of Aids-related illnesses, 11 million lived in Africa. Around 1.8 million of those died in Uganda, leaving an estimated 1.7 million children under 18 now living with just one or no parent at all. That figure could soar in the next few years as the estimated 2 million Ugandans who are infected fall ill and die. Across Africa, nearly 5,500 funerals are held for Aids victims every day.
Tramping around the schools, hospitals and clinics of Uganda, you find startling statistics almost everywhere. In the half-a-dozen schools I visited in four different areas of the country, the average proportion of orphaned pupils was between 25 and 30 per cent. According to a British aid official in Kampala, up to 50 per cent of the children on Kalangala island in Lake Victoria are orphans.
The biggest category of Aids victims by far is children, whether they suffer through infection or loss of parents. In Uganda, an initial attempt to place children in orphanages quickly became impractical as Aids spread and the number of orphans swelled. Most of them relied instead on someone from their extended family coming forward to share the burden. But throughout Africa, the tradition of the extended family is being stretched beyond breaking point. Aids is causing the disintegration of family life in the space of a single generation. In many cases, small children are left to fend for their younger siblings on their own. In Zambia alone, 90,000 orphans are living on the streets.
In most cases, headteachers can't tell you which children have been orphaned by Aids, because no one wants to admit the cause of death. But district officials concede that the HIV virus is the overwhelming cause.
Teachers themselves are a high-risk category because they are of the sexually active age and often work away from home, increasing the likelihood of casual relationships and multiple partners. Their relative wealth also makes them a good catch for young women or even girl pupils.
In Cote D'Ivoire, an estimated eight teachers die of Aids-related illnesses every week. In the Central African Republic, 85 per cent of all teacher deaths are Aids-related. Malawi expects to lose 30 per cent of its teaching force in the next five years.
But if they contract HIV, it is not just a personal tragedy - they will find carrying out their work increasingly difficult, bringing the quality of education down.
Matthew Okot, general secretary of the Uganda Teachers Association, says that since Aids was first detected in Uganda in 1982, in the southern town of Rakai, schools have been hit hard. "If you lose one or two teachers and it's not immediately possible to replace them, that brings problems. I think it has happened a lot around the country."
The economic impact of Aids is devastating. Hit by illness and the loss of breadwinners, a rural family will typically switch from cash-crops to subsistence. Ugandan government studies show that when a father dies, his widow and eldest children must work two to four hours more every day. Girls will be forced to leave school and work at home or tend the sick. As income slides, children are withdrawn from classes for lack of money to pay school fees.
For those who still attend, learning becomes increasingly difficult. Having suffered the trauma of their parents dying a long, horrible death, these children are often taken in by guardians for whom they become a low priority - if it comes to it, the guardian's own children will be the first to go to school.
Nationally, the worry is that many of the gains Uganda has made in the drive towards universal primary education launched three years ago will be wiped out by the high Aids-related dropout rate. Indeed, the global drive to provide education for all agreed at the UN conference in Dakar this April could be undermined in this way in all the African countries with a high incidence of HIVAids.
"It does affect the performance of pupils in schools," says Mr Okot. "Orphans lack the parental care which they need so much and which complements the efforts of their teacher. And they may not have people paying their fees. It is a huge national problem. While teachers and society may be doing their best to comfort them and prepare them for life ahead, they will be haunted by the fact that they merely survived and could have perished, as no assistance is given to them."
The Ugandan government was one of the first to recognise that Aids could not be tackled unless the country owned up to having the problem. President Museveni set up a national committee for Aids prevention and an intensive public education campaign was launched in 1986, backed up by free supplies of condoms, voluntary testing for HIV and counselling services.
"Faithfulness, abstinence and condoms" was the message, and it brought results. The number of new infections tumbled from 230,000 in 1987 to 57,000 a decade later. The progress should have encouraged other countries to follow suit, but in most the rate of infection is still increasing.
Unfortunately, for millions of children in Uganda who have already become orphans or will do so in the coming years, this turnaround has come too late. A senior nurse, counsellor and community worker in a regional hospital north of Kampala recounts the case of a teacher and husband who both tested positive. The mother could no longer face having sex. She came home one day to find her 12-year-old daughter in tears. Her husband had forced himself on their daughter, condemning her to their fate.
"Defilement" of young girls, putting them at risk of contracting the virus, is a common problem, partly because older men mistakenly believe they can cleanse themselves of the disease by sleeping with "clean" girls, and partly because women and girls in Uganda have traditionally felt powerless to stand up to mistreatment by men, as evidenced by the lack of court convictions for such offences.
Far more common is the situation of a group of Nacwola children in Arua, a bustling trading centre on the border with Congo and a short drive from southern Sudan. The aid lorries bound for Sudan, streams of incoming traders and people displaced by continuing conflicts to the west, north and east of the district make it a high-risk area for the transmission of HIV.
The group is run by an inspirational art teacher, Rose Atibuni, 33, who is HIV-positive.
One by one, in a clearing in front of a group of thatched huts in Obolofuku village, the children explain their predicament. It is a litany of personal loss.
Bernard Econi, 10, Onduandera Judith, 12, and Muluta Gillian, 13, lost their father in 1992. Mundura Liberia, 10, and Ambaru Jacinta, 13, lost their father, then their mother, in 1995 and then their brother two years ago. Baraki Saffi, 14, lost his father when he was one and his mother when he was seven.
Tisia Prisca, 13, tells her own story: "My parents died, my father when I was five and my mother when I was nine. My brother died four years ago when he was five. A teacher who was a friend of my mother looks after me. Her husband died in 1992."
Most admit to going hungry. "We find it difficult. Sometimes there is no food for us. When my mother was there I had shoes," says Ambaru Jacinta.
"Sometimes I go hungry," says Tisia Prisca. "Sometimes we come for lunch and don't get anything because there is no food, and go back to school with no lunch."
Others tell of problems staying in school. Baraki Saffi was going to secondary school but can no longer afford the school fees. Maluta has had to repeat a year but fears she can't keep up. "It's impossible. Because I have to do work at home to survive when mother is sick, I don't go to school regularly." She has to fetch water, prepare food, go to the grinding mill, cook and wash clothes - and do her homework. "Two to three times a year, I am off school for a week to 10 days."
About 15 children in the group have similar stories. At Nacwola, they get a chance to sing songs, write poems and make friends without worrying about the stigma they encounter at school.
"At school they tell you you are an orphan and you are starving," says Liberia. "I want to stay with friends who are orphans because if they have parents they can make you think of your parents. If you stay together you don't feel sad."
The group, which is supported by the charity Save the Children, teaches the children life skills including how to stand up to bullying at school, how to protect themselves from the Aids virus and, in the case of girls, how to resist unwanted pressures from older men.
Maka Saffi, 16, who lost her father and mother and three of her father's other wives, says: "(At school) they tease us, saying we are the girls whose father died of Aids. We tell them it's normal to have HIV. Their parents probably do but don't know it."
The sad truth, though, is that many of the younger orphans may themselves be HIV-positive through prenatal transmission. But few of the Nacwola mothers have their children tested, because the stress would be too much to cope with on top of their own HIV status.
Unlike Janet Kyabita, Rose Atibuni had someone to yell at when she found out she was HIV-positive. Her husband, Raphael, 35, also a teacher, had been ill for some time and had been secretly tested, but could not bear to tell Rose the result. So she went to the hospital and got tested herself.
When she came back she exploded. "I said, 'How can you be so selfish?' I blew my head off. He had had many partners. In his heart of hearts, he knew."
But far from giving up, Rose decided to confront the issue head on. She marched into school and told her headteacher. "I told him I have a big problem, but I don't want it to interfere with my teaching. I was new, but I said the only thing was to accept it."
One colleague told her she was not alone, but many kept their distance. Yet the more bold Rose became in being open about her status, the stronger she became, and the more her stature grew among her colleagues. "When my husband died in 1992, he looked like a scarecrow. But they said, 'This woman is improving'."
Now Rose finds she commands respect from the children because she can talk to them about intimate subjects such as sex, which parents, even now, often shy away from - a common problem in spreading the Aids prevention message. And she believes she is a better teacher for it.
The trained counsellor employed by her school to promote healthy living constantly calls on her to share her personal experience with pupils so they grasp the importance of protecting themselves.
But Rose's greatest achievement is the support system she runs through Nacwola for the child outcasts of Arua's villages, the Aids orphans.
"We are championing something that will benefit others," she says, "so that they will not feel the strain so much." Her only regret is that her husband, Raphael, did not live longer, so that he might have encouraged men to be open too.
If you would like to help fund Nacwola's work, cheques should be sent to Save the Children, Nacwola appeal, 17 Grove Lane, London SE5 8RD. Or call the credit card hotline on 020 7701 0894, quoting the Nacwola appeal