Henning Mankell - I Die, but the Memory Lives on

Julie, who was once married, lived for a time on the streets of Kinshasa and later in churches after her husband and baby daughter died and she discovered that she was HIV-positive. Like many other women, she was ostracised and faced a life of destitution.

She began to work in the restaurant run by Fondation Femme Plus, a women's group founded in 1994, and visited the centre where FFP's 1200 members gather for social support, training and financial help. She was selected to join the small group of women being trained to use a camera. As a photographer, her images, like those of the other women, show a sometimes shocking and harsh reality. All the images are a powerful record for the women's families of their own feelings about living with HIV.

"Now I know how to take photos and I know how to describe the meaning behind a photograph," said Marie-Jeanne, another photographer. "Through the photos, we have shown different ways in which people suffer with HIV/Aids such as the thinness. We have also shown how women cope. I feel proud of what I've achieved. I've done something that I never thought I could do."

Several of the women photographers are still working, appearing at government functions in Kinshasa to be the official "snappers". Others are no longer alive. But they have left behind a memory – images – of their lives with HIV.

Some of the women made up family albums of photographs for their children. One of the captions from Julie, who has since passed away, reads: "The photograph was taken for a family album, which will be passed on to my children as a lasting reminder of my life."

Memories

It is this sort of work that is an increasingly powerful element of support for people who are dying and for their surviving family members, especially children, "Memory work" since the early 1990s has evolved as a vital element for people living with HIV and Aids.

The long interval between infection and becoming ill and then dying that is experienced by many people gives them time to contemplate their last months or years, answer their children's questions about their illness, and make plans for their children and other dependants.

"I miss my mother's smile"

Many young orphans are sent to live with distant relatives, foster parents, in institutions or on their own, and the risk of losing their personal history is high. These children often grow up without a clear sense of their identity, their family traditions or their roots. The sense of loss is enormous.

"I miss most of all the good times with my mother, laughing with her," remembered nine-year-old Emmanuel Kalunga, speaking to Christian Aid in his grandmother's home. "I miss my mother's smile most of all."

Memory work encourages a process of reflection and discussion that allows people living with HIV to come to terms with the practical and emotional implications of their illness. It can motivate parents to acquire the knowledge and skills to make their children's futures secure, and it provides the opportunity for dialogue and a resolution to difficult topics about guardianship and inheritance with both extended family members and children.

For children uncertain of their future without parents, memories – in the form of a book or an image – can provide a basis for a more secure future.

Memory work can give children a link to their past and help them to build a "portable" identity, understand the loss of their loved ones and develop more self-confidence, resilience and hope for the future. Memory books, boxes and baskets have been created to provide a place for the tangible pieces of a person's life. Through the collection and discussion of the stories, photos, drawings, souvenirs, body maps, family trees and other mementoes, these memory stores help families address and cope with disease, death and grief, document prematurely shortened family life, plan for children's futures, and reduce the fear that many children have as they consider life without their parents.

The increased availability of drugs, and the resultant prolonging of life, may reduce the urgency of memory work as death ceases to be the most pressing concern of people living with HIV. But work with memories will undoubtedly remain a unique way of confronting difficult issues and creating links with the past for children living in uncertain times.

Today's emergency

Today there are more than 40 million people living with HIV. In 2003, an estimated five million people became infected. Three million people died. These days, 95 per cent of people living with HIV live in developing countries. Almost three-quarters of them live in Africa.

HIV is often linked to poverty. It is a vicious circle: poor people are often more vulnerable to HIV; HIV makes formerly productive individuals and families poor. On a national scale, HIV has a devastating effect on the economies of highly affected countries. By the end of 2004, it is estimated, HIV will cut GDP by a quarter in many southern African countries.

The recent food crisis in sub-Saharan Africa was due in part to HIV. HIV has eroded agricultural productivity as men and women of working age die. People who are living with HIV are also more vulnerable during food shortages. James Morris, executive director of the UN World Food Programme, summarised the situation: "The issue of HIV/Aids is so overwhelming that it will change this part of the world [sub-Saharan Africa] for a long time to come – its impact on women and children; its impact on the labour force, on the local public and private economies. The Aids crisis in Africa will ultimately have more impact on food supplies than recurrent droughts."

The effect of HIV does not stop there. School enrolment is falling in many parts of Africa. In Swaziland, the number of children in school has fallen by a fifth. Girls, in particular, are more likely to be deprived of education as they are taken out of school to earn money or to care for sick parents and relatives.

All walks of life

HIV affects everybody, in every walk of life. Deaths among educated groups of people – teachers, health workers, key community members including priests – have led to a huge skills shortage. In Zambia and Malawi health workers have suffered a five- to six-fold increase in illness and death. The deaths of so many health professionals add to the difficulty of delivering health care in an already overburdened system.

The widespread effects of HIV are not confined to Africa. Eastern Europe and the former Soviet Union are seeing the rapid emergence of epidemics, and HIV prevalence is continuing to rise in Latin America and the Caribbean. In Haiti, six per cent of the adult population aged 15-49 is infected with HIV. In Asia, an estimated six million people live with HIV. Many are in the poorest and most vulnerable communities.

In UK and the United States, HIV prevalence rates continue to rise, too. But as treatment is widely available, the visible consequences of young adult illness and death have almost disappeared.

Some successes

The history of HIV has been marked by some successes – and many failures. Some countries, where there has been strong political leadership, have shown that HIV can be prevented and the crisis turned around. But elsewhere, political and religious leaders are turning a blind eye with terrible and fatal consequences. The opportunities offered by new drugs and the hugely energetic and committed efforts of local community groups are being ignored at the cost of lives.

Mother-to-child transmission

One notable success has been the prevention of transmission of HIV from mothers to children during birth and early infancy.

The Atlanta-based Center for Disease Control and Prevention reported its first case of possible mother-to-child transmission in 1982, and in 1985 HIV transmission through breastfeeding was described. Without interventions, mothers infected with HIV have about a one-in-three risk of passing the virus to their babies. In 1994, a study showed that the antiretroviral drug AZT could halve the rate of transmission. This landmark discovery was followed by a further trial in Thailand, which showed that another regimen – cheaper and easier for patients to take – could also halve transmission, even in poor communities.