Charlotte's Web

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Reading about AIDS

Today is World AIDS Day. Around the world, landmarks are being lit red, celebrities are turning off their Twitter streams and hundreds and thousands of people are renewing their commitment to universal access and human rights.

My home country, South Africa, has the highest number of people living with HIV/AIDS in the world. It seemed natural to me, when I started writing a novel three years ago, that I would somehow try to address this. So soon after we had achieved freedom from the ugly strictures of apartheid, we were struggling with a disease that seemed to target the poor – the very people who had suffered during apartheid.

During the process of writing Balthasar’s Gift, I did a lot of reading around the topic of HIV/AIDS and today, on World AIDS Day 2010, I’d like to recommend some of the books I read.

The shortest and most moving book was Rebecca Brown’s The Gifts of the Body, which I reviewed here. Brown is a former home-care worker and her compassion for the dying and unstinting generosity in meeting people’s needs was astonishing to experience. When reading about AIDS, we are beset by statistics that are huge and difficult to digest, and what Brown does is to take it down to the individual level. Her unstinting compassion shines through. I was inspired by this book to create two characters who are homecare workers and who understand the need to relate to people not as statistics but as whole human beings, who still feel, think and dream.

Another book that moved me deeply was Edwin Cameron’s Witness to AIDS, which I reviewed here. Cameron, a Constitutional Court judge in South Africa, is gay and living with HIV. In 1999, he went public with his HIV status – only a year after 36-year-old Gugu Dlamini was stoned and stabbed to death after publically declaring on Zulu-language radio that she had the virus. Witness to AIDS is part autobiography, part analysis and is gripping. AIDS disclosure is becoming less of an issue in South Africa, but in 2000, when my novel is set, it was still an incendiary issue and I centred the book around it.

I also read and reviewed Sizwe’s Test, by South African journalist Jonny Steinberg. What Steinberg does is to follow two people – spaza shop owner Sizwe Magadla and Médecins Sans Frontières (MSF) doctor Hermann Reuter – during a two-year period in which the former tries to decide whether to test for AIDS or not, and the latter does his utmost to provide AIDS testing and treatment in Lusikisiki, one of South Africa’s poorest and most remote districts. What Steinberg does so well is to empathise with both men and the adversity that they face, so that, as a reader, I understood both Sizwe’s intricate cultural difficulties with acknowledging AIDS and Hermann’s Herculean challenge in ensuring adequate services for the poverty-stricken people of Lusikisiki. This book helped me to see how having HIV/AIDS is tightly tied  up with people’s ideas of masculinity, and that to test, and to admit HIV status was, and still is for some men, testament to undermining that masculinity.

These were my top three reads, and I can strongly recommend them. Four other excellent books were:

AIDSAFARI: A Memoir of My Journey with AIDS by Adam Levin. Levin is a South African journalist and his book takes us through the daily trials of living with AIDS. It is beautifully and amusingly written.

The Virus, Vitamins and Vegetables by Kerry Cullinan and Anso Thom. This takes the reader down the rabbit hole of AIDS denialism, thankfully now on the wane in South Africa. AIDS denialism is one of the themes of the novel and I used this book to understand why an entire administration could deny the link between HIV and AIDS and question the viability of antiretrovirals.

Illness as Metaphor and AIDS and Its Metaphors, by Susan Sonntag. Passionate and moving, these two great essays gave me insight into the mythology we create around disease, which can distort the truth about illness and isolate the patient.

When Bodies Remember by Didier Fassin. This is an academic book that sets out to demonstrate how the history of colonization, domination and segregation still vividly affects today’s South Africa, most specifically with regard to treatment or the lack of it.

Do you have a World AIDS post? If so, let me know I will link to it here.

For every comment I receive on this post today, I will be making a donation to AVERT, the international HIV and AIDS prevention charity. If you would like to make a donation yourself, just click on the blue and white  ‘Stop AIDS in Children’ button on my sidebar.