New Internationalist

We Are Sick And Suffering; We Want You To Accept Us

Issue 346

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AIDS / STIGMA

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End the stigma
HIV/AIDS is not a punishment or a warning; it's an illness. Too often people with AIDS are painted as unfortunate victims who are then stigmatized and shunned. This triggers a cycle of fear and denial which frustrates both treatment and prevention.
‘We are sick and suffering; we want you to accept us'
Daniel Kalinaki reports from Uganda on what
people with AIDS are doing to help themselves.

Aids was first identified in Uganda in 1982 at a small fishing village on Lake Victoria. The local people initially believed the new disease, nicknamed ‘slim’, was caused by witchcraft.

People suspected of having AIDS were left to waste away. Neighbours refused to shake their hands, share plates and cups with them and, in some cases, even talk to them.

That began to change in 1986 when the new government of Yoweri Museveni found that more than half of a group of Ugandan soldiers taken to Cuba for training had tested positive for HIV. The vulnerability of the armed forces prompted the Government to declare openly that HIV/AIDS was threatening to become a disaster and to call for international help to fight the epidemic. The AIDS Control Programme was launched in 1987 and the Uganda AIDS Commission a year later.

Within a few years, by 1992, Uganda became the first African country to announce a fall in the HIV infection rate. But why did it happen in Uganda? And not in much richer countries like South Africa or Nigeria?

‘The answer could lie in the way the community responded to the threat of the epidemic,’ says Joyce Kadowe, a social scientist at the Uganda AIDS Commission (UAC).

‘Both the Government and NGOs have done a lot of work, but you can’t discount the role of community-based organizations and people living with HIV/AIDS.’

Those people include women like Florence Kumunhyu. Then a 33-year-old mother of seven, Florence tested positive for HIV in 1993 after her husband and two co-wives died in ‘suspicious circumstances’.

When the epidemic exploded, people living with AIDS in Uganda started talking to other people, encouraging them to take the HIV test, to live positively and support the sick. Soon small, community-based organizations began to appear, especially in the countryside. The lets-do-something-about-it spirit quickly spread – a legacy of the strong bonds of kinship and community from African traditional society.

For Florence Kumunhyu, it started with weekly visits to Iganga Development and AIDS Concern (IDAAC) near her village in Iganga district, 140 kilometres from the Ugandan capital Kampala. At IDAAC, a volunteer NGO based in a local hospital, she received counselling and treatment for the opportunistic diseases which follow infection by the HIV virus.

‘But I realized that the people in my community were not benefiting from this service because they were not open,’ she says. Florence began to encourage people in her community to go for HIV testing at IDAAC. When this didn’t work she took the next step.

‘I decided to form a drama group to teach people about how to protect themselves from AIDS and also not to fear those of us who already have it.’ Many of the women in Florence’s village are now members of her group. The group has no name and no funding but they walk several kilometres to other villages to sing, dance and act out dramas on HIV prevention. ‘We are sick and suffering,’ they sing, ‘but we are human beings and want you to accept us.’

Initially, the group faced stigma and discrimination. ‘Now there are many people who have AIDS or know friends and relatives who have AIDS,’ says Florence. ‘Now they have stopped laughing, instead they come out to help us whenever they can.’

It is this ability to do so much with so little that has given Uganda the edge in its fight against the epidemic.

There are many other ‘Florences’ scattered all across Uganda. In Kampala, Major Rubaramira Ruranga, an army officer who is HIV positive, runs the group NGEN+, while across town the National Community of Women Living with HIV/AIDS (NACWOLA) has similar aims. Groups like The Aids Support Organization, NACWOLA and NGEN+ receive outside funding, but Florence and others like her just have big hearts and love for one another.

Their success shows the importance of involving people living with HIV/AIDS in prevention work.

‘We should be involved in the fight against HIV/AIDS,’ says Rev Gideon Byamugisha, the first priest in Africa to declare he was HIV positive. Rev Byamugisha now runs an HIV prevention programme in the Namirembe diocese of the Protestant Church of Uganda. ‘We are best placed to seek and identify solutions to the problems that affect us and also ways of stopping the spread of the disease, so we should be fully involved.’ Rev Byamugisha was recently appointed to the board of the Uganda AIDS Commission – the first person living openly with HIV to sit on the board.

Even though the spread of the disease has slowed (the number of pregnant women testing HIV positive fell from 6.8 per cent to 6.1 per cent between 1999 and 2000) there are still 1.4 million people living with HIV/AIDS in this country of 22.7 million people. There is virtually no social welfare system and community shock absorbers have long been worn out by the sheer numbers. The government, whose efforts to fight HIV/AIDS are funded largely by donors, is already feeling the strain of the epidemic on the economy.

Uganda will need a lot of support to repair the damage that AIDS has wrought. However, the country will have to use home-grown solutions to solve the social problems and one such solution is to empower people like Florence Kumunhyu and others living with HIV/AIDS to be at the forefront of the fight against the epidemic.

‘We need to involve the people living with HIV/AIDS more in our activities,’ says Joyce Kadowe. ‘They are not the problem, but part of the solution.’

Daniel Kalinaki is a freelance writer and
journalism student living in Kampala.


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