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The new frontier
Janet van Eeden. 04 February 2004. The Natal Witness. Republished courtesy of The Natal Witness.
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Home-based carers are pushing into the rural areas to confront the ravages of HIV/AIDS with little government back-up.
?“I wish some politicians would come and spend just one week with me doing home visits. They will quickly know many families where someone has died of AIDS,?” says Phumzile Ndlovu, at the preview of Deadly Myths?, a documentary that looks at the confusion surrounding the HIV/AIDS crisis.
Ndlovu has won one of six Young South African Achiever Awards from loveLife for her work as a co-ordinator of 80 home-based care-workers in the Bergville district. One of six winners chosen out of over 5 000 entrants around the world, she will soon be on her way to Brazil with the director of loveLife to speak on her work in South Africa. Ndlovu has been part of the Deadly Myths? documentary team, assisting in co-ordinating the care-workers who chose to speak on film about their daily lives spent caring for the AIDS-ravaged people of Bergville.
?“I began to get involved with this work when I went to a youth conference at KwaSizabantu,?” says Ndlovu. ?“A group called Doctors for Life brought HIV-positive and terminally ill patients to the conference to talk to us. It was so moving that I cried all night after listening to them. So I wrote to WorldVision to volunteer my services in their Child Survival programme. Working under Monica Holst, WorldVision sent me on a few courses and soon I was giving talks on sexuality at schools for the youth in Bergville. Then I became involved with Child Survival Project Manager Mama Dube, helping her with all the home-based carers in the area.?”
?“It wasn?’t long before I was helping with co-ordinating the carers, who were looking after the terminally ill people in the rural district. The carers are mature women who are responsible for a number of homesteads in Bergville. These women help the dying, not only by feeding and nursing them, but also by sharing their love and compassion. I now do the same work, but also research, for HIVAN, which is the HIV/AIDS research and networking centre of the University of KwaZulu-Natal.?”
Ndlovu is part of a research team that is undertaking a long-term, detailed study of what it is like for ordinary people to live in a remote rural area with a high prevalence of HIV/AIDS. The team is headed by senior researcher and social anthropologist Patti Henderson. The research has contributed to the content of Deadly Myths?
The HIVAN documentary shows how women in Bergville walk miles to bring food and comfort to the sick and dying. The carers themselves are living in the poorest of circumstances, often in a one-room shack without electricity and running water. They show no self-pity but speak with deep compassion about their patients.
?“When someone is dying of AIDS,?” says Ndlovu, ?“the family usually has no idea how to cope with them. Because of the nature of the illness, the patient will suddenly develop new opportunistic symptoms that can frighten the family. The carers show the family how to deal with these new symptoms in the best way possible. The ill people and their families are able to pour their hearts out to the carers about everything. That is often more important than the little medical help they have to offer.?”
Ndlovu also talks about her role in finding doctors when the patients are desperate for help. ?“Because the community doctors are in the clinic most of the time, they seldom get to the people in the rural areas who are too ill to walk the distance to the clinic,?” she says. ?“So we help the clinic come to the patients.?”
Another minefield for those who are ill, or who are caring for ill people, is the whole issue of disability grants. ?“I think the government largely fails the people in this regard,?” says Ndlovu. ?“How on earth can we expect people to queue for their disability grants when they are, in fact, dying? Most of them desperately need the money because a lot of people are starving, but they are too ill to go to the government departments to fetch their grants. They also only qualify for a disability grant when their CD4 count (a measure of the seriousness of the disease) is so low that they can barely walk! I try to use my telephone in the office as much as possible to try to sort out all these problems but the situation isn?’t good. Many people die before they are paid what is due to them.?”
Ndlovu stresses how confusing it is for certain politicians to make the kind of statements they do about the AIDS crisis. ?“They should see how the women I work with are giving up their lives to tend to the sick and dying. These carers aren?’t paid for what they do. All they get are food parcels. I think the welfare system does not have its act together.?”
Distress over the lack of responsible input from various levels of government is seen all too starkly in the documentary, the latest from Jill Kruger, a social anthropologist and documentary producer. As the Deputy-Director of HIVAN, Kruger intends to use the documentary to broaden awareness on widespread misconceptions about the transmission of the disease and to take the debate into communities that are ravaged by HIV/AIDS. But people?’s misconceptions about viral transmission are not rooted only in their mistrust of government.
In the documentary, young men and women speak about their beliefs regarding the disease and their misconceptions are often terrifying. Some men refuse to use condoms because ?“condoms have worms in them?”. Another belief is that the lubricants in condoms are poisoned by the whites so that all the blacks will die. Some people believe that AIDS is passed on through snuff. Others believe that oranges sold by Indian vendors are injected with the virus. In contrast, some Indians believe that oranges sold by black vendors are injected with the virus.
And the myth that sleeping with children, Chinese women or old women will cleanse the sick person has been seen all too clearly in the appalling increase of rape in general, and of child rape in particular. The pervasiveness of myths like these contributes to the apparent hopelessness of the situation.
On the response of politicians, Ndlovu says: ?“They should come and live in the real world.?” |
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