Reporting on HIV: A Personal Reflection

I have focused on two stories aimed at giving readers insight into the personal costs of HIV through the experiences of a single individual or family.

Love in the Time of AIDS

Dec 1, 2002— One lingering look and Bongi and Elliot knew they wanted to be together. But later, their love disintegrated as lies, infidelity and a retrovirus played on their frailties and fears.

"The first thing he ever said to me was: I was so lucky to come into this room and see this lovely lady. I pretended I never heard anything although this was exactly the moment I had been waiting for."

Bongekile Zulu's face softens; the hint of a dreamy smile plays on her mouth as she remembers the 27-year-old man she met 13 years ago when she was only 19.

"He came to me and held me by the arms and asked if he could have a moment with me. His brother was so excited because he said Elliot was usually shy, and told the others to leave the room. When we were alone, Elliot said to me he loved me and wanted to see me again." ... Read more

World AIDS Day offers a rare opportunity to write a story about someone with HIV, knowing that there will be space. I decided that I wanted to write about what the virus can do to a person's intimate relationship. Often testing HIV positive is the first shocking confirmation a person has that their partner has been unfaithful to them. Women usually get tested before their male partners as they are strongly compelled to be tested when pregnant. I was looking for a woman who had discovered her HIV status and this discovery had fundamentally changed her relationship.

I searched for three months before meeting Bongi. She had never told her story to anyone before and it was very painful for her. For five days, she came to my office and we spoke for 3-4 hours. I tried to recapture the early days of being in love, then the ugliness that accompanied her disclosure that she was HIV positive. On the fourth day, I read her bits of the draft I had formulated. Sometimes the written word can be shocking to a person. She was subdued for a while after I had read my draft and checked some of the detail with her. It was only then that she dropped her bombshell: that Elliot had known long before she had tested HIV positive that he was HIV positive:

AIDS entered their lives like an intruder, tearing into their already fragile marriage and turning Elliot into a hostile stranger.

"It took me about two weeks before I told him. I started to talk, asking if he knew anything about AIDS."

Elliot's response was aggressive: "Don't talk to me about AIDS. Do I look like a person with AIDS? As from today, you must never talk about AIDS in my house," he threatened.

"When he said this he looked like a man who was about to slap me, so I kept quiet. But this thing was eating me inside, making me thinner and thinner. I knew I had to tell him, so after a while I just said to him, 'I know you don't want me to talk about AIDS. Well, I don't want to talk about AIDS but I need to talk about myself. I am HIV positive'."

Elliot remained silent. Then he got up, left the room, returning with a glass of water. "All this time I thought you were my wife," he told Bongi coldly. "But now I see you just look like all the other bitches. If I had known I would have had this problem, I would never have looked at you."

Then he set out his ground rules. "You must never tell anyone about this. You must not visit anyone and no one must visit you."

It was only by spending a lot of time with Bongi that she was able to acknowledge— even to herself— what had hurt her the most; that Elliot had turned into a violent monster that blamed her for bringing HIV into their home when all along he had known his HIV status. She had been so hurt by his denial that it was difficult for her to admit this even to herself, let alone to me. It was not until we had spent some time together that she was able to reflect on this and how much pain it caused her. This taught me that there is no shortcut to getting the important detail, especially when it is this painful. People can only tell you when they are ready.

I never interviewed Bongi in her home as she was unsure about how her family would react to her going public with her story. I always regret this as it made the story about Bongi's past in a way that was removed from her present. I also think at times my narrator's voice stands in the way of her own inner thoughts coming through.

The Loneliness of Zwe

Sept. 12, 2004— Zwelihle soaps Ndumiso thoroughly, dries him with a frayed face cloth then smears Vaseline over his square little face and body while the seven-year-old giggles and wriggles.

But before 15-year-old Zwelihle has a chance to wash himself, Dumazile Ndlovu, a neighbour, bursts in wearing her nightgown.

"You awake? Come on, wash, wash, wash. Why haven't you ironed? Look at these clothes. Go and fetch the iron, Zwe."

Wordlessly Zwe Madlala, a dark, serious teenager with big eyes, goes up the steep path to Dumazile's house. He returns a few minutes later with the iron and sets to work on a tumbled pile of school clothes that he had washed the day before. ... Read more

Zwe, Zamo and Ndumiso are a family of three brothers who live alone. They have witnessed their older sister, mother and her boyfriend dying. Zwe, who was 15 when I interviewed him, had been caring for his 11 and 7-year-old brothers for 18 months.

"Phaa, phaa, phaaa". The boys kick a flattish soccer ball around on the narrow strip of orange dust in front of the house. Each time Zwe dribbles past one of the others, a giggle of delight bursts from him— brief moments of pleasure in his overburdened young life.

Zamo, however, doesn't stick around. A bit of a comic, who often communicates with exaggerated expressions, he roams the township most of the weekend. "Just visiting", he says vaguely before disappearing.

This story relied almost entirely on observation. I wanted to show what it is like when children are running a household. But there were other reasons. There was a language barrier between us, and Zwe by his own admission did not relate well to adults. When around adults he became very withdrawn and subservient and tried not to draw attention to himself. In addition, the only interview I had with him was mediated by a fieldworker from an NGO that channelled food and clothing to Zwe's family. Photograper Katherine Muick and I simply camped out at the family home for two days and watched every exchange and detail. The boys got used to us after a while and ignored us. We were able to watch them preparing meals, preparing for school and just hanging out with friends. I had virtually no access to Zwe's "inner monologue" but there was plenty of dialogue between them to draw conclusions from.

By touching on these stories, I wanted to share very briefly some of the opportunities and pitfalls I have experienced while trying to write intimately about AIDS. I am far from succeeding, but the few lessons I have learnt are as follows:

Reporting Tips: Kerry Cullinan, Health-e News Agency

  • Long, rambling conversations work better than formal interviews. In interviews, subjects can be self-conscious. So many times, once I have stopped writing and put away my notebook (i.e. started behaving like a normal human being), the subject relaxes and becomes more him/herself than an "interviewee". Often in this "down time", a person will make their most important observations and comments.
  • Never expect your subject to be able to understand what you are looking for. Ask questions about all kinds of things. Objects that you come across in their homes, workplace, car etc are often a start. These often reveal stories that would never have come to light anyway.
  • Nothing can take the place of spending time with a person in their home environment and seeing them with family and friends. Taking photographs helps with the writing afterwards as there is usually too much to try to absorb at the time.
  • While it is fine to have an idea of what you want, it is important to be flexible. Things don't often turn out the way you expect that they will and approaching a person or story with too many preconceived ideas can blind you to realities that are often even more interesting than expected. Prioritise and simplify. Sometimes I have done so much research that I am reluctant to leave out any of the information. But then my story ends up with a blizzard of fact-confetti obscuring the narrative.
  • While it is fine to have an idea of what you want, it is important to be flexible. Things don't often turn out the way you expect that they will and approaching a person or story with too many preconceived ideas can blind you to realities that are often even more interesting than expected. It is important to try to explain to your editor/news editor/sub-editor what you are trying to achieve. Unless they have some understanding, your lovingly crafted story is in danger of being savaged by the news hounds.