A must read book about HIV and stigma

Having just finished reading Jonny Steinberg’s latest book on HIV/AIDS, called The Three Letter Plague, many feelings and thoughts swirl through my head. It is a shocking, sad, depressing, yet uplifting and insightful book – all at the same time – and should be required reading for opinion formers in South Africa.

Steinberg spent much time in villages in Lusikisiki in the Eastern Cape and followed a young man he calls Sizwe around, while investigating the nurse-based ARV programme initiated by Doctors Without Borders in the area.

Many things in the book confirms what most informed readers would already know: that HIV carries a serious stigma in this country; that many people in South Africa are confused about the causes of HIV and how to treat it; that the HIV epidemic has strong political undertones in South Africa because of our history of colonialism and apartheid.

But what forcefully struck me about the book is the sensitive and nuanced way in which Steinberg exposes the complexities of this epidemic in a rural area utterly unfamiliar to a white middle class person like myself. He takes the reader into villages where cars and even television sets are never seen and where people negotiate the complex relationship between their own traditions and the Western influences in often surprising ways.

Reading the book made me realise again how little some of us city folk know about the lives of people living in many rural parts of South Africa and how complex the relationship is that some people have with the Western/colonial/white world that many of us in the chattering classes belong to or take for granted.

I like the fact that he highlights the fantastic work done by some of these folks in some of the villages and that he portrays the heroic dignity and strength of especially some of the rural woman in these parts, while at the same time discussing the often vicious and selfish attitudes and behaviour of others. He does not shy away from talking about the more difficult aspects of a culture that to some extent have been decimated by the colonial experience.

It seems to me the book goes a long way to explain – without justifying – the AIDS denialism/dissidence of President Mbeki by focusing on the relationship that especially rural black men have with the epidemic and the life-saving ARV’s. He points out that these ARV’s are seen by some as an invention of western white doctors and that many black men feel humiliated about having to rely on them. By relying on ARV’s, he argues, some people might feel that they would once again be enslave by the white man.

Paradoxically, despite this highly sensitive and even sympathetic look at the culture and beliefs of people living around Lusikisiki, it seems to me the book indirectly shines a harsh light on President Thabo Mbeki’s “leadership” on HIV/AIDS. As a self-proclaimed intellectual and as a compassionate leader, one would think that the President would have confronted these issues in a sensitive but firm manner in order to help people overcome the stigma of HIV and the stigma associated with taking ARV’s.

Yet, after reading this book I wonder whether the President himself is not perhaps the prisoner of shame and fear and whether he has not failed the very people whose lives depended on him transcending these colonially instilled feelings of fear and shame.

Steinberg makes clear that even if President Mbeki had confronted the fears and stigma head on, had publicly gone for an HIV test and had championed the use of ARV’s, there would still have been those who would not have tested and would not have arrived at clinics before it was too late.

But I cannot help but think that strong leadership on this could have saved countless lives and that the tragedy of Mbeki’s Presidency and of the history of HIV in South Africa over the past ten years has been that he has not been able to do that because he has not addressed his own demons.

In any event, this is a book that might open many eyes and might – unexpectedly – even garner some sympathy for our desperately flawed President and his unconscionable attitude towards HIV/AIDS.

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