Mail & Guardian, Living out loud, 30 January 2004
Another HIV book arrives on my desk to add to the groaning pile of what I call my “HIV/Aids bandwagon” collection. But it was heartening to see the usual pitfalls being avoided in a new book called Long Life, a compilation of stories from 13 HIV-positive women who are refreshingly not just the subjects of an Aids book but also the authors, writes Nawaal Deane
nother HIV book arrives on my desk to add to the groaning pile of what I call my “HIV/Aids bandwagon” collection.
It is with skepticism that I view books on HIV/Aids because the pandemic has become an income-generating industry that tends to leave out its victims. Making money off Aids — even indirectly — is not politically correct, especially among activists, when the vast majority of people with the disease suffer poverty and are disempowered.
Don’t get me wrong, I am the first to admit that even journalists benefit from reporting on the pandemic — whether it is through awards or even free trips to Barcelona.
So it was heartening to see these pitfalls being avoided in a new book called Long Life, a compilation of stories from 13 HIV-positive women who are refreshingly not just the subjects of an Aids book but also the authors.
The women’s group was born out of participants from the Memory Box Project at the University of Cape Town, run by a team of Aids researchers and psychologists. Project leader Jonathan Morgan says the book was the result of a “definitional ceremony, where people who may experience themselves as sick, shameful, hopeless, unemployed and useless tell their stories in the support group with members hearing and encouraging each other”. The women in the group were asked if they would like to share their stories with a wider audience — and from 30 participants, 13 volunteered.
It is hard to digest all the stories in one sitting because of the intimate nature of the narratives. It feels as though one is peeking into a diary with all the secrets written down and decorated with private photographs. Every page in the book is unique. The book also works as a cultural-political campaign in response to the government’s delay in rolling out anti-retroviral (ARV) drugs. Although the government has since released the treatment plan, the book stands as an educational guide to anti-retroviral treatment.
The women take the reader into their lives, where they share their dreams in a simplistic style. Imperfect spelling and grammar reinforce the authenticity of the stories.
The book does not shy away from some “Thabo-bashing”. There is an amusing scenario where President Thabo Mbeki is answering God on his failure to provide treatment for his people. In the book Nondumiso Hlwele writes: “Here in South Africa the president is not always telling the truth. Jussus, it is bad.”
This is echoed in other criticisms of government’s inaction until last October. “Many people in the government say that poor people are too stupid to understand how to take ARVs. We love these drugs. We never forget. This is the most important thing to us,” writes Bulelwa Nokwe.
Flipping through the glossy pages, one is struck by the intriguing use of body maps to illustrate the stories. Jane Solomon, art director of the project, came up with the idea of each woman having her own body map. “Your body has recorded many memories — some positive and others painful. There are scars, beauty spots and feelings that you carry on your body,” says Morgan.
The women were told to lie down on big sheets of paper, where their physical outlines were traced. They then had to colour and paint the map in an image of themselves. “First we did not know what we were doing, we just thought we were playing around with colours,” writes Hlwele. “But when we were finished, you could see yourself lying there, your pain is lying there and you have released what you feel.”
Many of the women drew the HI virus in their bodies together with the scars and babies they carried. Morgan said that the process and publication of the book has become an empowering experience for the women.
Hlwele, who was chosen to go to New York to launch the book, says she was bombarded by art dealers who raved about the body maps. The Constitutional Court has also offered to buy their original body-map paintings. The burning question remains: “Who gets the royalties?”
Hlwele says the Bambanani group will but it has decided to share it with members of the project and other contributors to the book. “My life has changed since I joined the project and [Morgan and Aids researchers] came to us when we had no hope. Now I have been offered a job at the university.”
Morgan says they have approached an intellectual property rights lawyer and the group signed consent forms. “They could withdraw their stories or withhold their surnames at any point up until the book went to the publisher,” he says.
The women retain full copyright over the paintings and will receive
all the money if the originals are sold.
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