I Die, But The Memory Lives On

by Henning Mankell

  The rapid spread of the infection and the increase in the number of deaths has resulted in a drastic fall in average life expectancy in many countries. Take Zimbabwe, for example. Before HIV/Aids, mean life expectancy was 60. But the onset of Aids means that has now sunk to below 40 years of age. The US Census Bureau forecast recently that the mean life expectancy in at least eleven countries in sub-Saharan Africa would be around 30 years of age by the year 2010! Despite an increase in the birth rate, the Aids epidemic will lead to decreasing population levels in the near future.

  From the demographic point of view, the main problem in the short term is that thousands and thousands of people will die in their prime. Those left behind will for the most part be children and the elderly. This will lead in turn to an acute shortage of labour, mainly in agriculture but also in other professions. The catastrophic famines that have afflicted some countries in southern and eastern Africa in recent years are not entirely due to a lack of rainfall. The Aids catastrophe is at least as important a cause. There is simply not enough manpower in agriculture. Another grave and worsening problem is how to replace all the teachers who are succumbing to Aids.

  The HIV epidemic is estimated to have caused the deaths of between 20 and 25 million people throughout the world, of which 90 per cent have been in Africa. Last year at least 3.1 million people died of Aids, and it is now the fourth largest cause of death in the world. As the disease affects mainly those of a sexually active age, one of the tragic consequences has been a rapid increase in the number of orphans. It is estimated that overall more than 13 million children, most of them in Africa, have lost one or both parents due to Aids since the end of the 1980s.

  Not only Africa is affected

  We are now quite sure that HIV originated in Africa. It was then spread to the USA and Europe by a small number of individuals. Reports from other continents referred at first to only a very few cases. Exceptions were Brazil and the Caribbean countries. The virus spread rapidly there, leading to the same humanitarian and socio-economical difficulties as in Africa.

  Asia is about ten years behind Africa when it comes to the advance of HIV. This meant that when the epidemic was first identified, it was not possible to discuss prevention programmes with representatives of countries such as China and India.

  It will be a long time before I forget a visit I made to New Delhi in the autumn of 1987. I was general secretary of the Swedish Red Cross at the time. We had been working closely together with the Indian Red Cross for many years, especially in connection with disaster relief. After the experiences I had of the HIV epidemic in various African countries, I found it natural to discuss the matter with my Indian friends. The Indian Red Cross plays an important role in ensuring that there are sufficient stocks of blood in the country. I therefore offered help from Sweden in the form of equipment to screen the supplies of blood held centrally for HIV. The response I had from my colleague, Ajit Bhomwick, was a mixture of superiority and contempt. He said that the HIV epidemic was not a problem in India. This was because Indians did not have the loose sexual mores characteristic of us Europeans, not to mention Africans. He therefore declined any offer of assistance in this area.

  I met Bohmwick ten years later. We had both left the Red Cross by then. I asked him if he remembered our conversation from 1987. He smiled in embarrassment and admitted that he had made an error of judgment. Today, it is estimated that India has nearly five million citizens who have tested positive for HIV. The infection is spreading rapidly, especially in the big cities. It transpires that Hindu men in general visit prostitutes at least as frequently as men in Europe and the USA.

  The HIV epidemic has also reached China. For a long time the authorities refused to acknowledge the problem, but in recent years they have turned officially to WHO and UNAIDS for help. What is extremely tragic in the case of China is that a lot of the spread of the infection is due to flagrant negligence in the health service. Hundreds of thousands of poor people in rural areas were infected when they gave blood. Just as in India, promiscuity is relatively widespread, and in the longer term an extremely serious situation is in prospect.

  What is now happening in India and China is very ominous. If the epidemic develops in a similar way to what we have seen in many African countries – and the risk of this cannot be ruled out – it would mean that several hundred millions of Indians and Chinese would be affected. The human catastrophe would be scarcely imaginable in its proportions. It would also have a very serious detrimental effect on the economy of the two countries, and hence also on the world economy in general.

  Another region where the disease is spreading rapidly at the moment is eastern Europe. Authorities there are also very badly prepared when it comes to prevention programmes and direct nursing care for the afflicted.

  The HIV epidemic is a security problem

  During the first decades of the epidemic it was considered to be primarily a health problem in most countries. International meetings to discuss the implications were organised by WHO in the early days, and thereafter by UNAIDS. Those who attended were mainly health ministers and their colleagues. There was nothing wrong with that, of course, but as the epidemic spread it became obvious that more was being affected than merely health. For a number of countries in Africa, what is at stake is their survival as a nation. Decades of development aid are at risk. Whole sectors, such as agriculture and education, are facing more or less total collapse in some countries.

  For Africa as a region, the epidemic is also a security problem. How will certain countries be able to function, how will law and order be maintained, if the disease is not brought under control in the near future? This was the theme of a conference organised by the UN Security Council a few years ago. The initiator was the then American Ambassador to the UN, Richard Holbroke. As far as I am aware, it was the first time the Security Council had taken up a theme of this kind for detailed analysis.

  We shall be condemned by future generations if this kind of passivity is allowed to continue.

  With hindsight it is relatively easy to say what ought to have been done in the way of preventative measures at the end of the 1980s. There was already enough knowledge and experience to organise an effective prevention programme, but this experience did not lead to the action we now know should have been taken. Governments ducked the issue and the international community failed.

  A few countries have managed to buck the trend. This is true of Uganda and Senegal in Africa. It also applies to Thailand, and to some extent Brazil. The common denominator in these countries is very active government involvement. President Museveni has played a pivotal role in Uganda. All taboos have been stood on end. Ministers and other opinion formers have actively and systematically preached "safe sex". The distribution of condoms was a matter of course. But serious attention has also been paid to questions of abstinence before marriage and faithfulness within a relationship. These countries could serve as models for others.

  There is no contradiction when it comes to putting resources into prevention, and also providing support and assistance to people who have already been infected and/or fallen ill. Prevention and nursing care must go hand in hand. What is the point of undergoing tests if there is no care available if you turn out to be carrying the virus? In this respect an individual firm can play an important part. Many companies, especially in South Africa, have become actively involved in preventative work and also help to pay for and distribute ARVs among their employees.

  What we must now work to achieve is co-operation between all countries of the world in a long-term and systematic campaign to slow down and eventually stop the advance of the HIV epidemic. We must not allow the worst-case scenario to become reality, and must prevent the epidemic continuing to spread for another 60 years .

  What is needed first and foremost is total frankness about the disease and the ways in which it is passed on. A stop must be put to all those who continue to agitate against sex education and the use of condoms,
and who think, like some parts of the Bush administration, that the disease can be controlled simply by preaching sexual abstinence.

  Just as important is to mobilise sufficient funds to pay for preventative measures and the care of those who have the disease. We have a special responsibility for the welfare of the millions of orphans that the epidemic has already left in its wake.

  We must think big. Even if the USA and the EU have increased their contributions significantly, it is not nearly enough. We must work towards a tripling or quadrupling of the current levels of funding. At the same time the countries at the receiving end must revise their budget priorities and make health care their number one concern.

  Special efforts must be made in funding research to produce a vaccine, and to develop better and cheaper drugs. In this respect the US government has a major responsibility. Hitherto it has turned a blind eye to the activities of the giant pharmaceutical companies instead of making clear the self-evident fact that drugs must be distributed at the lowest possible prices in the poorest countries, and that the only alternative is the imposition of a compulsory licence for countries where Aids is widespread.

  Finally, it is important to do everything possible to prevent the spread of the epidemic in countries like China and India. It is estimated that so far only 0.5 per cent of their population has been infected. It should still be possible to prevent a catastrophe of the kind that has befallen a large number of African countries. In order to achieve this, everything possible must be set in motion now. In a few years it will be too late.

  Anders Wijkman, 2003

  Member of the European Parliament,

  formerly Assistant Secretary General of the UN,

  member of the board of Plan Sweden

  Life in the Time of HIV

  "Through my photos, I wanted to make people more aware of Aids, to show the consequences of the disease and to give advice. But I also wanted to demonstrate the hope that I still have in life, despite my illness"

  Julie, former photographer

  Fondation Femme Plus, Democratic Republic of Congo

  In 2000, Christian Aid, one of the UK's leading aid and development agencies, gave cameras and photographic training to HIV-positive women working with the Kinshasa-based women's organisation Fondation Femme Plus so that they could record images from their own lives – create their own testimony of life in the time of HIV.

  Fifteen women documented their day-to-day lives with families and friends, and doctors and hospitals, and their vision of the social tragedy caused by HIV. The result, the exhibition Positive Negatives, which opened in London and Kinshasa before touring the UK and Ireland, was a unique and powerful record for their children and future generations.

  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.