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AIDS kills over two million people every year and nearly 33 million people are infected with HIV worldwide. However, HIV prevention has slipped down the international agenda and meaningful attempts to tackle it are hampered by religious ideology and power struggles.
This book brings together stories from around the world that explore and expose the underlying 'politics of prevention' which deny millions of people life-saving education. The larger issues and trends in the global fight against AIDS are also studied, including the rise of the controversial abstinence-only movement in the US, which is now being exported to Africa.
In response to the unfavourable political climate, those worst affected by the crisis are becoming politicised in order to overcome the inertia in the international community and take truly effective action against AIDS.
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About the Author
Tania Boler is a leading specialist in HIV and Education. Through her work at ActionAid and in the United Nations, she has pioneered seminal research across Africa, Asia and Latin America.
David Archer has over twenty years experience working in international aid. He currently heads ActionAid's education team. A prolific writer and activist, David is widely recognised as one of the world's leading experts in international education.
Read an Excerpt
The Epidemic of Prejudice
Since 1981, more than 25 million people have died of AIDS. In 2007 alone 2.5 million people were newly infected with HIV. Although all parts of the world are affected by HIV, sub-Saharan Africa has been hardest hit, with AIDS currently the leading course of death. More than two out of three adults and nearly 90 per cent of children infected with HIV live in sub-Saharan Africa.
In sub-Saharan Africa, the HIV epidemic has spread over the past 30 years from east Africa (Uganda/ Tanzania/ Kenya) to southern Africa where epidemics have exploded at astonishing rates: nearly one in five adults is thought to have HIV in Namibia, Lesotho, South Africa, Swaziland and Botswana. The HIV epidemic has spread very differently between regions, with lower prevalence in west Africa, as well as within countries. Often HIV prevalence rates vary widely between cities (usually higher) and rural areas.
In east and southern Africa, most of the HIV epidemics are generalised, meaning that the virus has spread into the general population. Countries outside this region of sub-Saharan Africa tend to still have concentrated epidemics which means that HIV is generally confined to certain sub-populations such as injecting drug users, sex workers or men who have sex with men. For example, HIV is mostly contained amongst sex workers and their clients in Senegal, Thailand, Cambodia and Côte d'Ivoire. The number of countries where this is the case is probably much higher but as these groups are often so stigmatised, it is difficult to know what the actual numbers are. This is particularly the case for gay men in many parts of the world, especially Africa where many governments prefer to believe that this group does not exist. In Eastern Europe, nearly two thirds of HIV infections were caused through injecting drug use.
HIV and AIDS have changed the world for millions of people. The statistics can be so overwhelming that we can all too easily forget that each one of these people has a personal story. Yet it is in the details of individual lives that we can understand the real impact of the epidemic.
Of all the countries in sub-Saharan Africa, Uganda is the one which provides a special insight into the history and the response to the epidemic. Teo is one of the millions of Ugandans whose life has changed by HIV and AIDS.
TEO'S STORY, UGANDA
Born in 1963 in Uganda, east Africa, Teopista Burungi Mayanja – or Teo for short – was one of eight children from a modest family. Although Teo studied hard at primary school and completed her exams successfully, her family could not afford to send her to secondary school. At the time, it was possible to train as a primary school teacher without a secondary education. By the time she was 18, she was qualified as a basic-grade teacher.
In 1985, she took her first job posting in Kampala, Uganda's capital, at a large primary school with more than 2,000 students. It was then that she began to hear stories of an unknown illness:
It came from the south and people fled in terror. Neighbours warned each other in hushed tones, 'If your children are still alive, beg them to leave this place of horror.' It was killing people – young people – and fast. Stories spread from village to village, each time gaining momentum. Of one thing people were certain: somewhere, for some reason, a fury had been unleashed. The blame fell on one family in Masaka – near the border with Tanzania. They had argued with a family across the border and in revenge, evil spirits from Tanzania had been released. First, they attacked the family, sparing no one. Second, the village was destroyed. And now it was spreading across the country, hunting down those who tried to run away.
Two years later, a teacher in her school died.
She was called Lena – a beautiful young teacher, a single woman with many friends. I don't think she knew she had it. The campaign had not come out by that time. She was lean-cheeked, a beautiful girl. We just assumed she was naturally thin. But she kept falling ill. I would have to cover her lessons for her whilst she was in bed ill.
Lena's boyfriend was also a teacher at the same school and within a year, both had died. As many of the teachers had been relocated to Kampala to work at the school, they were mostly living in accommodation at the school. This contributed to the rapid spread of HIV through the school:
They were all living in accommodation in the school so they would all see each other in the evenings. They were young and they kept changing their mind and changing partners. That first teacher died soon after leaving the school in 1987. Within a few years, another 16 teachers in that school died.
Although Teo began to realise that it was AIDS that was killing her colleagues, she was unable to convince her family that AIDS had even intruded upon their own lives. In 1987, her sister died of an AIDS-related illness. At the funeral, Teo noticed that one of her younger sisters, Rosa, had lost a lot of weight and was looking very unhealthy.
Teo tried to talk to her mother and warn her that Rosa had AIDS. Her mother was distraught. AIDS was only for bad people. How could her own daughter suggest such a terrible thing? She shouted furiously at Teo: 'I did not expect that from you of all people. How could you say that against your sister?'
Teo asked her mother if she could take Rosa back to Kampala as they had better doctors there. This seemed to make things worse. There were tears and ranting. Her mother consulted her neighbours and became convinced that the family was cursed. It was a spell and not an illness. Teo was blamed for having too much education and creating divisions and difficulties. To Teo's despair, all the neighbours agreed and decided to send Rosa to the traditional 'witch doctor' instead.
When her mother asked her for the money, Teo was torn. She could see the trauma that she had caused her mother but she was desperately worried for her sister Rosa. Against her better judgment she finally agreed to pay for the traditional healer and she returned to Kampala alone.
Three months later the news came that Rosa had died.
Rather than convincing her mother that Teo had been right, Rosa's death led her mother deeper into the world of superstition and folklore. Once again she consulted the traditional healers. On one level Teo could see this was understandable. The traditional healers offered her mother not only an explanation but a cure. If she believed her daughters had died of AIDS, there would be neither cure nor hope. Teo's mother turned against her – effectively banishing her.
But despite all the money her mother spent on the healers and witch-doctors, just four months later a third daughter died of AIDS.
At this third funeral Teo arrived again. This time Teo herself looked pale and ill. The neighbours stared and said to one another: 'See that family; now even the educated one is bewitched.' Teo's mother saw them staring. She was ashamed and desperate. Was there no end to this curse – three daughters dead in the space of seven months and a fourth looking ill? What was going on in the spirit world? For what sins was she being punished? Surely now her daughter Teo would accept that something was wrong? If she too was ill was that not proof that education and science were no protection? That the real explanation lay in the spirit world – in the religious universe? Teo's mother pleaded with her to go and visit a traditional healer herself – to be cleansed of the angry spirit – to break the curse before it was too late. Only he would be able to do something.
Teo wouldn't listen. She refused to visit the healer and returned to Kampala. Concerned about her health she went to the hospital. After an anxious wait she was told that, rather than being sick, she was in fact pregnant. Teo rejoiced and sent the news to her mother, hoping this would reassure her. Instead her mother rushed to the local traditional healer with the news and sent back a message to Kampala. You must come back and give birth in the local river – only then will the curse be lifted. Teo refused. She stayed in Kampala and gave birth in a hospital. The baby was healthy – but the rift between mother and daughter widened.
Losing three sisters to AIDS devastated Teo and the situation with her mother was making matters worse. Back at school her colleagues continued with their whispering, 'You see that one, she is also a victim because she was going to bed with so and so, who was going with so and so.' The teachers gossiped and gossiped, without ever saying the word 'AIDS'; those individuals who were the focus of slander shrank away from the crowd. Ostracised, they started to apply for transfers – either to get away from a school where everyone was pointing a finger at them or to go to a place where no one knew them. Fleeing to a new place often didn't offer the solace they sought, for as soon as they were found out, they would be forced to move again.
Even though Teo's own family had been hard hit by AIDS, the silence which enveloped AIDS at that time in Uganda meant that she was unable to talk publicly about the disease. Teo was promoted to be head-teacher of a school with 26 teachers. As the outgoing head-teacher left, he warned her: 'Sara was a good teacher but is now very ill. She is very ill, she is (whispering) "infected" ... I was planning to transfer her.'
Teo soon found that three of the 26 teachers in her charge had HIV. Colleagues kept suggesting that she transfer them away from the school and away from their sight. Teo wanted to broach the subject with her staff but found it simply too awkward. What if the HIV-positive teachers were angry? And how could she help anyway? What could she do? She felt powerless. One option was to register them as sick; in this way they could claim sick pay while not working. After six months they had either to retire or return to school. The twist was that there was no provision for a replacement teacher if anybody took sick leave.
Then in 1997 there was a radical change to primary schooling in Uganda that made Teo's life even more complicated. President Museveni declared that the first four children in every family would be allowed to go to school for free. Most people in the world take free education for granted but in Uganda, as in many African countries, parents had been expected to make a contribution – to pay school fees. Even though the amounts were modest, millions of children, particularly girls, were being excluded from school because their parents could not afford to pay.
Museveni made the pledge as part of an election campaign and it proved immensely popular. He was swept back to power ... and children were swept into the schools. Over the coming year enrolment in schools doubled and within five years it had tripled. Although Museveni did invest more money in education by using increased revenues from debt-relief (and thus increasing education spending from 2.6 per cent to 4 per cent of GDP), the additional resources were insufficient to keep up with the increased demand.
Like most schools, Teo's school was dramatically affected. Class sizes shot up. For a time there were more than a hundred children in the first grade. Inevitably the quality of education deteriorated as children received less time from the teachers, classrooms were cramped, and there were insufficient materials or textbooks to go around. Teo doubled up classes and juggled with the teaching timetable on the assumption that things would improve once new resources came in. She sent the new enrolment figures to the government on the understanding that the school would then be allocated additional teachers. But the bureaucratic hurdles in the system meant that even when she left the school four years later she had received no new teachers.
The situation was made worse by the lack of clarity about government messages relating to free primary education. Parents started sending children to school without lunch or without scholastic materials because they thought free education meant that everything was free. Confusion also arose around the role of the teachers. The government announced that local leaders should become partners in education, resulting in many wanting to take over the role of head-teacher.
All those stresses were coming to the teachers in the classroom; a class with over one hundred students, some of whom are dozing – they have not had a meal. Some of them have nowhere to sit, so you have to walk over them. And here you are, and you also feel ill. That is the kind of stress I am talking about. Given the situation at the time, teachers did not have a voice.
Overwhelmed with the new pressures, the teachers in her school who had HIV were often too weak to work. It was erratic. Perhaps one week they would be fine and the next not. Sometimes the sick teachers would sit in the classroom but be too weak to teach. The students talked about it at break time and would then go home to tell their parents.
Teo started receiving visits from worried parents – mostly mothers. For a while she was receiving such a constant stream of angry parents that she suspected that they must have had some local meeting to discuss the situation. The mothers wanted to know why their children were not being taught properly. Why was the teacher always ill? Actually they didn't care to know why the teacher was ill – they just wanted a replacement.
Teo replied diplomatically: 'I am handling the situation'. But behind the scenes she was more anxious than ever.
It seems rhetorical to say that prejudice kills people – but Teo's story shows that all too often the stigma attached to HIV can be as deadly as the disease itself.
A recent review suggests that the stigma related to HIV and AIDS is more severe than that associated with other life-threatening conditions and that it often extends beyond the disease itself to anybody working with people with HIV. Prejudice about HIV and AIDS thrives in Europe as much as in Africa and Asia. It affects adults, teenagers and children. Prejudice takes many forms and many guises. It can be seen in a subtle shift of body language or felt in the form of direct abuse. Inevitably those who suffer from the prejudice about HIV become the most sensitive to its manifestations and often people with HIV begin to 'self-stigmatise' as they begin to feel inferior and imagine that everybody else sees them as such.
For many, HIV is linked with issues of immoral behaviour such as sex work or drug use. The stigma related to HIV is therefore often reinforced and exacerbated by the stigma which already exists for groups such as gay men, drug users, prison workers or sex workers. Molly, an Irish teenager, recalls what happened when the children in her class found out she had HIV:
The worst thing was that people assumed my parents were heroin addicts. No one seemed to think it could've been sexual transmission. For me that would have been a lot better – more sort of innocent. But no, everyone assumed my parents were heroin junkies, which made it seem like it was more their fault, more self-inflicted. As soon as it came out, I couldn't face school again. No one could do anything to make it better. There's nowhere more brutal than the school playground. Where I came from there's nothing lower than having junkies for parents.
Because of the stigma and fear associated with HIV, people are reluctant to get tested. Indeed, it is estimated that more than 80 per cent of people with HIV do not know they have the virus. Stigma also blocks people from accessing services, including counselling and treatment. Most of all, stigma means people who do test positive often keep their status a secret.
Max, a 15-year-old boy from London, England, who was born with HIV, says:
People don't need to know unless they need to know. I don't tell anyone unless I can't avoid it. I know they would react badly because people don't have a grasp of what AIDS is. I keep it to myself because it is guaranteed that, if people knew, there would be a majority against me instead of a minority. In life there's always a minority against you and you can deal with that but you can't deal so easy with a majority. If I realise that a person is okay to understand it and take it all in, and not react as if I am someone who is going to kill them if they stand near me or talk to me, then maybe I might consider telling them but I won't unless they really need to know.
Excerpted from "The Politics of Prevention"
Copyright © 2008 Tania Boler and David Archer.
Excerpted by permission of Pluto Press.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.
Table of Contents
1. The Epidemic Of Prejudice
2. The Impact Of Aids On Education
3. A Crisis In Education
4. The Power Of Prevention
5. Beyond Prevention
6. From Personal To Political
7. Religion Versus Science
8. The Politics Of Aid
9. The Power Of Money
10. Concluding Remarks