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.


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Sizwe’s Test

I’ve just finished this book by prize-winning South African journalist Jonny Steinberg in less than a day, and I have to confess I’m stunned by its vision, intelligence and compassion. Marketed in South Africa as The Three-Letter Plague (a title I prefer), Sizwe’s Test is subtitled A Young Man’s Journey Through Africa’s AIDS Epidemic. 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.

A third character who Steinberg encounters during his visits to the area is self-appointed community health worker Kate Marrandi. Unlike the two men, Kate is not young. She is not rich like Sizwe (he runs a small shop out of his two-roomed house and is considering buying a car, which makes him a wealthy man in his village), nor highly-educated like Hermann, but she is singled-handedly getting the people of her village who are HIV-positive onto antiretrovirals (ARVs) and watching them come back to life. Kate’s success is due, much like Hermann’s, to the fact that she is an outsider. She is a Zulu, not Xhosa, and has stayed behind in Lusikisiki to serve the people after her devout husband has returned to KwaZulu-Natal to proselytize for the Jehovah’s Witnesses.

Sizwe, on the other hand, is not an outsider. He grew up in the village where he now lives. For him to take an HIV test and to live with the potential outcome of that would be a threat to everything he is: a self-made man, a father, a husband, a son. Throughout the book, Sizwe’s intelligence shines through. Steinberg says of him:

His interest in me was neither watchful nor suspicious; I had arrived from a world he knew little about, and he wanted to imagine the place I had come from. By the time we reached his parents’ homestead I liked him. He possessed a curiosity both rare and distinctive; one recognizes it the moment one sees it. It is the curiosity of a person who has no interest in confusing the boundaries between himself and others, who does not identify or envy too much.

Sizwe’s curiosity takes him along on Steinberg’s journeys through the district, sometimes as translator and sometimes as observer. His understanding of the function of ARVs grows and yet he remains reluctant to test. By testing and potentially being found HIV-positive, Sizwe will have to acknowledge his promiscuous past, he believes he would lose his business and not be able to support his family, and thus never be able to pay the bride-price for his lover Nwabisa and give their son his own name. While Sizwe understands intellectually that ARVs can keep the sick alive for many years, his culture provides an impediment to his taking the test.

Steinberg shows how Sizwe sits on the cusp between old and new: he sits between the peasant society his parents grew up in and the modern new world where technology can save lives, between poverty and relative comfort, between the traditional requirements of manhood and a new, more enlightened way. At one point, Nwabisa has to give up work to stay home and care for their child, and Sizwe agrees to pay her the salary she has lost, plus an extra 15%. This is a world where women are changing too. Steinberg describes a support group meeting for people on ARVs where women discuss loudly and in public the nature of female desire, complaining that they may not always have condoms to hand when they are in the mood.

Hermann Reuter’s challenge, on the other hand, is to entrench the services he designs so that when he and MSF pull out and hand over to provincial government, they will continue. His goal is to show that if you provide decent treatment, people will come and get it. His triumph does come: a few months after he leaves, the South African government decides that nurses can dispense ARVs, which means that people can receive their treatment in community clinics and not at far-flung hospitals. At the end of the book Steinberg says his goal was tell a story of AIDS treatment, and that there is no reason to see Hermann Reuter as emblematic of the quest to heal a country of AIDS, nor to see Sizwe’s reactions as typical of ordinary people. However, he couldn’t help seeing the two allegorically – a doctor and a potential patient in the theatre of a battle against a pernicious epidemic.

Sizwe’s Test reads easily and well. It is intimate in its insights, but broad in its perspective. I would strongly recommend it for anyone wanting to see the human side of the AIDS epidemic. I also recommend it for Jonny Steinberg’s superbly strong writing. The dust jacket calls it a “tour de force of literary journalism”, and it is.