Why did you write this book?
Because there is nothing else in this country that is changing people’s emotional landscape more than AIDS. It’s very hard to access this landscape and write about it. There is still a great deal more to say.

What is 'Three-Letter Plague' about?
It’s the story of a young man who is healthy, successful, monogamous and married. Someone who thinks about and plans his future … yet he thinks he is positive and he won’t test.

Why?
The book explores the shame and psychological complexity that surrounds the disease. Sizwe lives in a place where there are limited ways of expressing how he will be a man. He wants to do what his grandfather did. He wants to be the patriarch his grandfather was. That is the biggest thing for him. That is what he wants for himself and his children. HIV is carried not just in the blood but in the semen. For him it is a curse that will leave him without a legacy. It is an attack on his intimate core, his sense of manhood.

Is Sizwe ‘everyman’?
Of the 480 000 people on ARVs in South Africa 70% of them are women. Many men are staying at home and dying. In that sense he is an everyman. But of course things won’t be exactly the same in an urban area. Everything is modulated by context but the theme of men being too afraid to test is universal – not just specific to South Africa.

How do we tackle men’s reluctance to test and seek treatment?
What men need is for treatment to be normalised. This is difficult when it is a site of battle. MSF (Medecins Sans Frontieres) ran a successful programme but their approach to men was wrong. They thought they could build a big social movement that would be so loud it would destroy shame. Men tend to run away from a social movement like that. MSF’s anwer to shame is that you create a loud social movement so your neighbours can know (your status) and say ‘join us’. That doesn’t appreciate how deep and complicated shame goes. A man like Sizwe would run away from this. In his mind to have the poison in his blood is to be a ruined man. He’s lived in a culture where for two centuries people have been saying join our cult and you will be healed. (The AIDS programme in Lusikisiki) reminds him of this stuff.

How can those involved in prevention and treatment programmes change their approach?
I’ve taken a problem and told a rich and detailed story of one man. It is for treatment workers to extrapolate from that and see what is useful and what is not. The social movement was successful in many ways and did many good things. But there was a specific category of men who would not be drawn in. We need to fight for treatment and we do need a social movement. I’m not saying it didn’t work.

Does the problem lie with men’s approach to their health generally?
Although research has shown that men take less responsibility for their health generally, with HIV the situation is exacerbated. The fact is that it is a sexually-transmitted disease that is carried in the semen. It is an attack on masculinity. Black men in this country have experienced domination as a process of emasculation. They were once patriarchs and this was taken away from them. This (epidemic) slots in very closely to the experiential history of domination. It is an attack on them as black, an attack on them as men. The shame of having this thing so close to your manhood, to issues of procreation, hits masculinity very hard.

How does writing this book leave you feeling about the country’s ability to combat the epidemic?
Objectively there’s not much reason to feel hopeful. Prevention has failed. A huge amount of money has been spent but it is patently clear that nothing has worked. If we can’t have a national conversation about things that are intimate and fundamental then what can we talk about? It says difficult stuff about us. In the last 20 years we have become a very sexualized, consumption-oriented society. People talk about sex in freer ways but it’s almost become a mask. In fact sexuality in this country is fraught and painful. All this talk is another mask to get away from it. This cocktail of masculinity, race and sex is about people feeling humiliated in ways they can’t describe. Where do you begin talking about it? It’s very hard. On prevention I think we’re really stuck. We need to concentrate on treatment. People are getting sick and will keep getting sick. Treatment makes it all visible. Perhaps visibility on a mass scale will provide an important vehicle to talk about it. We need to throw a lot of money into treatment and hope that it will do a lot of the work.

Is the fact that people are dying not having an impact on people’s behaviour?
Not in itself. When these programmes arrived in Lusikisiki there were funerals in every village every week. But when you asked people in the area how many had died they would say ‘five or six’. It’s easy to deny the numbers because deaths are disguised by opportunistic infections; any neurological disorder would be considered ‘witchcraft’. The local knowledge just wasn’t in a position to absorb the epidemic.

And if government had spearheaded this social movement?
People say if (President Thabo) Mbeki would test, everyone would test. But look at Sizwe. He saw that treatment worked. He knocked on the door of the sick and dragged them out (to go for testing and treatment). But the twist in the tale was that he wouldn’t do that for himself. What is his relationship to the people he’s helping? He is saying this is good enough for them but not for me: they are ruined men; I don’t want to be a ruined man.

What role do you think women can and do play?
They bear the brunt (54% of HIV-positive people are women) and yet they deal with it so much better than men when they get sick. Women can live with the contaminants in their blood more easily. They can deal with it better; do something about it. But it’s very hard for them to lead from the frontline … Sixteen, seventeen-year-olds leave Lusikisiki to look for work in cities like Durban and the chances are they will get money for sex. They bear the brunt of stigma too. They are accused of sexual greediness much sooner than men.

Doesn’t the fact that women are routinely tested in antenatal clinics explain why more women than men are going for treatment?
There is a big gap between testing and going onto treatment. The fact that more women than men are on treatment is not simply because they are getting tested (in antenatal clinics). There is more to it than that. For men the idea of not being autonomous, the idea of having your potency stolen from you is a uniquely male crisis. It messes up men.

Why is there so little research on men?
There is a hesitancy to deal with things that are difficult. Men are difficult.

But not all men are like Sizwe?
Of course some men are rising to the challenge. Thirty percent of those on treatment are men. But just as it’s harder to get them on treatment, it’s also harder to keep them on it. I met around six to seven husbands and wives on treatment – half of them absconded from treatment and went to the church.

Don’t they see that ARVs work?
Sizwe thinks that HIV poisons the blood and that if he took the pills several times a day each time he would be reminded of that poison. Dirt and contamination were what the pills reminded him of. I expect the opposite would happen though if he did go on them. … (SABCOHA patron) Edward Cameron told me that he did not realise it then but for 12 years he felt that his blood was dirty. This only went away when he started taking ARVs and he saw them as cleansing. But there is a harsh moral edge to this cleansing: nurses tell you that you have to stop smoking and drinking when you take ARVs. Once you become an object of cleansing, the moral element enters. You start seeing others as dirty … this is where you see the cultish element to the social movement. There is something that smacks of the reborn, something quasi-religious about it, particularly in this context, where most people are villagers in a rural area. It excludes people who then become outsiders. The TAC has done amazing work but stitched in are limitations and this is one of them. It’s a weakness that is also a function of its strength.

Have people involved in prevention been defensive in their response to your book?
It’s early days yet but those who’ve read it who are working in a treatment environment have been very engaged by it.

You’ve recently moved to New York to research your next book. Tell us about it?
It’s a story of a community of 5 000 Liberian refugees who live in a New York housing project on Staten Island. They all come from a terrible civil war. The book will explore what happens when a whole section of people have been taken across the ocean to start new lives in the United States.