BY ALEXANDER MATTHEWS
David Dickinson is a Wits sociology professor. His new book, A Different Kind of AIDS, explores perceptions of HIV/AIDS in South African townships, investigating the folk and lay theories that continue to surround the disease.
How did A Different Kind of Aids come about?
The book emerged from my research and reflections on the Aids epidemic. It was clear that, despite a lot of money and time spent on Aids education, there was excruciatingly slow behaviour change, particularly over safer sexual behaviour. There have been some shifts, particularly over testing and treatment, but when it comes to prevention, change has been glacial.
In 2005 I started to research what workplace peer educators, typically blue-collar workers recruited to assist HIV/AIDS programmes, were doing when communicating face-to-face with co-workers, family and neighbours. Later, I initiated a project in which 30 peer educators captured the different explanations of AIDS that they encountered. The project also developed stories or parables to counter these “AIDS myths”.
The project had some successes, but it also challenged me over how the myriad counter-narratives of the epidemic and the disease had survived almost 30 years under constant fire from a sustained health promotion onslaught. Myths can be understood differently, but however conceptualised they are not supposed to be able to stand up to science.
Who should read it?
Anybody curious over why AIDS education has been so ineffective and would like to know more about the counter-explanations of AIDS that continue to hold their ground among township populations.
Those who would like to know more about the kasi (South Africa’s townships). I researched in a number of locations, but place the main characters in two fictitious, though illustrative, townships: Potlakong, in Gauteng and Butleng, in the Free State.
Finally, social science students who wish to explore the option of research methods beyond pap n’lebese (pap and milk) research. Such standard social science research — including questionnaires or one-off interviews — can’t adequately explore AIDS beliefs or, indeed, a raft of other important issues and concerns.
Why are folk theories around HIV/AIDS so prevalent?
Because science has not yet come up with a quick and easy cure, something similar to the five-day antibiotic cure for syphilis. Without the upper hand, allopathic (Western or scientific) medicine must contend with alternative explanations of AIDS in the population.
We should not be surprised at the vibrancy of the alternative explanations of AIDS circulating in the kasi. Non-scientific beliefs, which we all hold to degrees, are elastic in nature; they will always expand to fill any void that science cannot quickly and convincingly occupy.
You’ve focused on four main protagonists to explore the non-scientific views on HIV/AIDS that many people hold. What was the reason for this?
Context. I wanted to see if people who were HIV-positive or were close to somebody who was positive gave credence to different explanations of AIDS. I wanted to be sure that what the peer educators had heard and reported was not just idle chatter, or speculation, or bragging. I wanted to see if these explanations of AIDS were utilised by people for whom AIDS was truly salient.
Having a chapter on each of four characters, and their supporting casts, allows an exploration of their lives and what their beliefs about AIDS mean in context. For example, in the chapter on Neo Pakwe’s salvation, I describe her faith that God can take away her HIV infection. I also outline, through different scenes, how her church supported her beliefs.
To be fair to the contribution that others made to the book, the contribution of the peer educators must be recognised; they laid down the foundation on which the book was built. And, to be fair to any potential reader, I should warn them that I am a further protagonist who explores the kasi and Aids beliefs, and wrestle with the conceptualisation and explanation of what I witnessed.
What is the strangest Aids-related myth you’ve encountered?
A key message of the book is that, once understood in context, alternative explanations aren’t strange. Something that, on first sight, looks bizarre or outlandish makes sense when you see an underlying idea belief structure. Theories of AIDS, or anything else, are credible within particular contexts. What you believe depends on what you already know.
What was the most surprising thing you discovered in your research?
That, despite compassion, we can end up dehumanising people.
How does religion in townships influence sexual behaviour and responses to HIV/Aids?
Religion has an enormous influence on what people think about HIV and AIDS. In the taxonomy of AIDS belief that I describe, religion, along with traditional African beliefs and racial explanations of the epidemic, constitutes the “big three” folk theories of HIV/AIDS.
However, we need to disaggregate this influence into its different components if we want to grasp how religion influences the epidemic. In terms of sexual behaviour, many Apostolic, Zionist, Pentecostal, Charismatic and other churches stress Old Testament morality. However, there is a gulf between such professed public moralities and daily practice. In terms of religion’s social influence we need to acknowledge that as preachers, prophets, priests and pastors “kill sin” from the pulpit, they also provide people with hope and a standard to hold. The hope that churches, in different ways, provide is about many things, and not just AIDS. We need to see how the AIDS epidemic is incorporated into existing religious cosmologies. This frames the way AIDS is understood within churches. Churches, provide, along with other social spaces, “AIDS speakeasies”, are spaces away from expert scrutiny where alternative explanations of AIDS are professed, believed and refined.
Why are public health messages failing to resonate with many people?
The public health slogans that emerge from the remote machinations of the AIDS establishment, often struggle to compete with the vibrancy of kasi-generated folk and lay alternatives. At least when there’s no expert making sure the lesson goes as planned. Alternative explanations of AIDS are rooted in the gritty realities of township life; they are credible in context. We’ve ignored this uncomfortable fact for a long time.
How can HIV infection rates in townships be reduced?
Infection rates have only marginally decreased, so we should stop planning to repeat what we are currently doing and reflect. Above all, we need to stop assuming that people are empty vessels waiting to be filled with the correct information on HIV/AIDS.
Where this would lead is beyond the scope of the book, but what I hope the book does articulate is a call on the need to recognise that what people believe is shaped by the conditions in which they live. And, equally important, that we can’t reduce these beliefs to a simple, dichotomous model that privileges our conceptions and dismiss the beliefs of others.
The book provides some pointers on more credible tactics that could be employed within a re-orientated, more respectful, strategy. For example, again drawing on Neo Pakwe’s experience, I explore how she successfully fashioned a stable compromise between her religious beliefs and taking anti-retroviral drugs. She doesn’t believe what AIDS educationalists would like her to believe, but what she does hold to allows her to avoid the tragic treatment odysseys undertaken by so many who jump from one alternative explanation of AIDS to another, until it is too late.
What was the hardest thing about working on this book?
I didn’t change what I thought about the biology of AIDS, but I changed my views about how we are tackling the epidemic. I realised that we were trying to help people who we didn’t understand. That meant breaking with my previous beliefs and differing with people whom I respect.