Thirty years ago, at the end of 1996, I came back to Nongoma after spending a couple of months in Europe doing research for my postgraduate studies. One of the first things I noticed was that a close friend of mine was ill.
I had arrived in Nongoma in 1992 to begin my ministry in the Uniting Reformed Church. I was a young white Afrikaner, unmarried, and very much out of my depth. The congregation was Zulu, the community around me was Zulu, and I was simply Deon among people whose language, customs and way of life I hardly understood.
If the women in that congregation had not taken me by the hand, I would probably have drowned. They fed me, watched over me, corrected me, made sure I was not left alone too much, and helped me understand how things worked. I had arrived thinking I was going there as a minister, but quite quickly I realised that I was the one who needed to be taught.
I made friends with young people my own age and asked them far too many questions. I wanted to know what apartheid had done to their families, what they thought of white people, what they feared, what they hoped for, and what kind of country they imagined might come after apartheid.
One of these young men became particularly close to me. He tried to teach me isiZulu, although I remained a slow learner, and he was very patient with me. More than anything, I wanted to understand how he saw the world.
When I returned from Europe towards the end of 1996, I could immediately see that he was not well.
Eventually I persuaded him to see a doctor. I will never forget that consultation. The doctor spoke to me in Afrikaans and, I think, assumed that the Zulu man I had brought with me was simply someone from my congregation, not a close friend. He said, with a bluntness that shocked me, that surely I could see what was wrong. He had Aids, he said, and he was not going to recover.
I have often thought about that moment. I do not think the doctor would have spoken in quite the same way if he had understood the relationship between us. There was a kind of violence in the casualness of it, in the assumption that the man sitting there could be spoken about rather than spoken to. I have never forgotten it.
We still had to do the blood test, but in the doctor’s mind the result was already clear.
I remember how shocked I was by my own naivety. HIV and Aids were already part of public discussion, but somehow I had not imagined that it would come this close to me. Suddenly it had the face of somebody I knew very well.
We drove for the test, and on the way I had to start preparing him for the possibility that he was HIV positive. It was a very difficult conversation. He began telling me things about his life that he had never told me before and, by the time we arrived, I think both of us knew what the result was likely to be.
A few days later I fetched him from his home because there was no telephone there. This was before cellphones became part of ordinary life, so he had to phone the doctor from my house. I sat opposite him while he listened.
When he put down the phone… I can still see his face… he said: “I’m positive. Please don’t tell anybody.” Then he asked me to take him to the market because the doctor had told him to eat more fruit and vegetables.
That moment has stayed with me for 30 years.
From then on, HIV and Aids became part of my ministry in a way I could never have imagined. I took people to hospitals, sat with congregation members and friends after they had been told that they were HIV positive, watched young men and women become terribly ill, and buried far too many of them.
There were periods when it felt as though I was conducting a funeral almost every Saturday.
The stigma was terrible. In church communities it could be particularly painful because HIV immediately became tied to questions of sex, morality and shame. We were not nearly honest enough about sexuality, and we certainly did not speak with the urgency the epidemic required. I found myself becoming a sex educator as much as a minister.
I also learnt quickly how unequal the epidemic was. People with money had more options. Poor people had very few. For many of the people among whom I worked, an HIV diagnosis still meant a slow and frightening death.
Some of the memories I carry are small ones. I remember taking yoghurt into hospital because some of my friends had become too weak to eat ordinary food. I remember sitting next to people whose bodies had wasted away. I remember a poster on the wall in one ward saying that if you jumped from an aeroplane without a parachute you would die, and if you had sex without a condom you would die.
I used to look at that poster and then at the men lying in those beds. It was only much later that I understood why that image stayed with me. The dying were being confronted very directly with their own responsibility and the consequences of their behaviour, while at the level of government responsibility was much harder to pin down.
Those were the years in which HIV and Aids became caught up in political denial, confusion and arguments about treatment. If you were sitting next to someone in a hospital bed, those arguments did not feel intellectual. They were about whether people would live.
At one stage, after years of this, I realised that I was no longer coping very well. I went to see my own doctor in Vryheid. Before I could tell him why I had come, he told me that he needed somebody to talk to. He had diagnosed so many people with HIV that he was struggling himself.
When we both realised why I was there, we laughed. It was not really funny, but I think we just did not know what else to do.
By the time I left parish ministry in 2003, I was exhausted. For years afterwards I struggled even to listen to discussions about HIV and Aids. If it came on the radio, I often switched it off because too many faces came back with it.
Years later, when antiretroviral treatment became widely available, we saw what was possible. People living with HIV could work, marry, raise children and grow old. A diagnosis that had once meant almost certain death became something people could live with.
That is what still troubles me. What about the people who died before treatment reached them, and what do we owe them?
I have often wondered why South Africa has never had a proper reckoning with those years. I am not convinced that another commission would solve it. We have had many commissions and inquiries, and we know by now that hearing the truth and acting on it are not the same thing.
South Africa has heard a great deal of truth. We know what apartheid did. We know what happened during the HIV and Aids years. We know much about the arms deal and we know in extraordinary detail how State Capture worked.
What we have struggled with is consequence.
Perhaps one of the inequalities we speak about too little is the inequality of consequence. Poor people generally experience consequences quickly. A worker who does not arrive at work has to explain himself. A family that cannot pay an account quickly discovers that rules are real. Somebody applying for a social grant must have the right documents and follow the process.
Powerful people can often delay consequence for years through lawyers, appeals, reviews, inquiries and postponements, and by the time anything happens public attention has often moved somewhere else.
I first understood this during the HIV and Aids years. The people I buried experienced the consequences immediately, as did their families and their children. Political responsibility was far harder to find.
What I learnt in Nongoma is that public policy is never abstract. In those years, decisions about HIV and Aids were felt in hospital wards and in homes where families were caring for people who were dying. The same is true of public services today: when government systems fail, the effects are eventually felt by ordinary people in clinics, in communities without reliable water, and in municipalities struggling to provide basic services.
There is also an uncomfortable part to this for people like me. As a white South African I cannot point only to the failures of the democratic state and pretend that the society from which I came did not deny accountability to black South Africans for generations. If accountability means anything, none of us can demand it only from people we dislike.
What I learnt in Nongoma is that decisions made far away eventually arrive in somebody’s life. In those years they arrived in hospital wards and in homes where families were caring for people who were dying. Today they arrive in communities without water, in broken clinics and in municipalities that cannot do the most basic things.
Thirty years later, I still think about the friend who sat opposite me in my house after speaking to the doctor. If he had lived, he would be an older man now. He might have grandchildren. He would probably still laugh at my isiZulu, and I suspect we would disagree about many things.
What hurts is the ordinary life he never had.
South Africa cannot give him that life back, or the lives of the many others who died in those years. But we can decide whether what happened will simply disappear into history, or whether knowing the truth will eventually mean that somebody has to answer for it. DM
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