Novelist CATHERINE DUNNEwrites about her visit to a community in South Africa which has been ravaged by the 'twin evils' of HIV and TB
THAT MORNING as I arrived, cloud hung low over Table Mountain. The air was heavy, grey, sticky with the threat of thunder. My destination was some 40km to the southeast of Cape Town: Khayelitsha, one of the largest and fastest-growing townships in South Africa.
Its name means “New Home” in Xhosa. It is a sprawling gathering-together of dwellings, spread-eagled along the outskirts of Cape Town. It is impossible to discern where Khayelitsha tumbles into the neighbouring townships of Nyanga and Crossroads, impossible to see where one begins and the others end.
Cape Town may be one of the most beautifully located cities in South Africa: it glories in the dramatic backdrop of Table Mountain and stunning views of the sea. Historically, it is also one of the most segregated. Well over half a million people live here in Khayelitsha.
Giuseppe De Mola, the Médecins Sans Frontières (MSF) project co-ordinator, tells me that Khayelitsha has one of the highest rates of HIV and TB in Africa – one of the highest rates, in fact, in the world. This is a community that still continues to be ravaged by the twin evils of HIV and tuberculosis, the latter often drug-resistant to an alarming extent.
At first, I am taken aback. I know a little about the HIV epidemic in South Africa. I’ve read up on it, done some research. But where I come from, tuberculosis is now a cultural memory – still a potent one, but nonetheless it is just that, a memory. It was once “an epidemic, a curse, a scourge” in my father’s words.
In Ireland, tuberculosis had always been “the poor man’s disease” and the stigma was a powerful one. The resonances for me here in Khayelitsha, more than 60 years later, are deeply distressing.
Right now, throughout the world, 4,000 people a day are dying from TB, the majority of these in sub Saharan Africa. It causes more premature deaths than any other disease: and these deaths tripled between 1997 and 2005. Some 4,000 people each day. Every day . . .
Giuseppe De Mola tells me of the pilot programme for Drug Resistant Tuberculosis (DR-TB) that has been developed by MSF in Khayelitsha over the past three years. Because of the prevalence of HIV, and the lowered immune systems that come with it, DR-TB is rampant in the township. Tuberculosis is a particularly opportunistic disease and poor living conditions facilitate its spread. I am anxious to find out how it is possible to tackle this scourge that continues to keep an entire community in its grip.
In 2007, MSF in conjunction with the City of Cape Town and the Provincial Government of the Western Cape, developed a pilot project to do just that. An essential part of MSF’s work was to raise community awareness, and to start to remove the sense of shame that TB and HIV always seem to bring in their wake.
These combined forces gave birth to a new and radical system, one that allowed patients to undergo treatment at their own local clinic, while still living at home with their families, still staying anchored within their own communities in Khayelitsha.
I had many steep learning curves during the short time I was in South Africa. One such curve was learning to re-define language. Words such as “epidemic”, “poverty”, “stigma” acquired new meaning: a meaning well beyond my sheltered understanding. I’d heard something of the story of Gugu Dlamini while I was there, and I felt compelled to find out more about her.
In the late 1990s, Dlamini was a 36-year-old mother of one, living in the eastern part of the province of KwaZulu Natal. At that time, 20-30 per cent of the population had been diagnosed with HIV or Aids. It is more than reasonable to assume that the real percentages were, in fact, a great deal higher, as the prevailing social stigma around HIV was particularly intense at that time.
This was something that Dlamini knew well. In many cases, women were the ones who presented for testing. Men seemed to prefer to remain in denial. Dlamini herself had been diagnosed as HIV positive and became an activist in her home province, attempting to encourage other people, women and men, to come forward for testing.
On December 12th, 1998, she gave a radio interview in which she openly discussed her HIV status. The reaction to her disclosure was both immediate and violent.
That afternoon, she was punched by a man whom she recognised. She reported the incident to the police, terrified by the savagery of the attack. To say that the authorities were lax in following up her complaint is something of an understatement.
Later that evening, Dlamini was set upon again, this time by a mob who beat her unconscious. She later died from her injuries.
“Come and get your dog,” the mob taunted her boyfriend. “We have finished with her.”
In the campaigns that followed, MSF played a pivotal role in re-educating the public that HIV was a disease like any other.
Behind all of the statistics, though, lie myriad personal stories waiting to be told. Before the roll-out of antiretroviral therapy (ART), a whole generation suffered enormous losses because of the rampage of HIV. In too many township houses, grandmothers are the core of the family, bringing up children whose parents died young because of the twin assaults of HIV and TB.
Lindiwe tells me one such story. I am anxious to meet her. It is beginning to get late, and evenings in the township are not a safe place to be. She invites me to her house.
Hers is one of the few brick-built homes in that part of Khayelitsha and her sense of pride is palpable. A piece of carpet rests on the concrete step that leads up from the street; bone china is displayed in a wooden cabinet in the small living room; all the surfaces are polished, gleaming.
Lindiwe is soft-spoken, smiling. She remembers well the indignities of living under apartheid. “We had to eat from separate plates,” she says. That memory still stings, still embitters.
She used to earn her living as a domestic worker, travelling from the Ciskei in the late 1970s to join her husband in Cape Town. He had gone before her, to look for work. But Lindiwe discovered on her arrival that her husband had taken up with another woman, and was living openly with her.
She took her four-year-old daughter, Lydia, and accepted a position as a live-in maid with a white family. She recalls that her room was barely big enough for one. Hard years followed.
When Lydia was barely 20, she gave birth to a son. Lindiwe never knew her grandson’s father, and Lydia refused to discuss him. Single motherhood was no novelty in the townships – then or now. In their culture, young black girls believe that a baby is the most valuable gift they can give to their lover. It means he will love them more, look after them better. He will draw them into his arms, into his family, and they will be his responsibility forever. The reality can be somewhat different.
Within a short time of her son’s birth, Lydia was diagnosed as both HIV and TB positive. She began to drink heavily in the local shebeens. Lindiwe was at her wits’ end. She was trying to be mother, grandmother and provider: providing, among other things, for her daughter’s expensive daily TB injections.
When Nelson was two, he also was diagnosed as HIV and TB positive. When he was seven, Lydia died. Now Lindiwe was, like so many other women of her age, solely responsible for bringing up her grandson. “A whole generation gone,” she says.
Five years ago, Lindiwe, supported by and together with members of her family, disclosed to Nelson that he was infected with HIV and with TB. He still attends the Ubuntu clinic in Khayelitsha, is compliant with his medication, is doing well at school. He is now 15 years of age.
But what of his future? “Employment prospects are very bad. I cannot afford to pay for him to continue school.” Lindiwe’s eyes fill. “I am afraid for him – afraid of drugs and alcohol. And the company he keeps.”
Khayelitsha’s population is overwhelmingly young, unoccupied and disaffected. Lindiwe fears for her grandson’s safety: she is terrified of how late he comes home now, coming closer and closer to the unofficial curfew, pushing the boundaries all the time. “These streets are very dangerous,” she says. But she tries to be positive about the future. “God gives me strength.”
She is a huge advocate of the clinics established by MSF, makes sure her neighbours know about them, tries to ensure that everyone spreads the word. Without them, she would not even have her grandson Nelson.
We say goodbye and as I leave, she points to my bright green “Beat TB” T-shirt, the black slogan an eye-catching one. “I want one of those,” she says. “I will wear it every day!”
I promise to get her one. I walk to the car, never more conscious of the thousands of miles – in every sense – that separate my life from hers.
Busisiwe's story
Busisiwe Beko and her daughter Othandwayo
Two years ago, I was found HIV positive, I had TB and I was pregnant. I started ARVs , but my TB treatment did not work.
When my baby was two months old,
I learned I had MDR-TB . My baby was found free of HIV, but as she had to stay with me, she got MDR-TB. I finished my treatment in September 2007.
And my baby continues until November. On December 2nd, she will be two and will have spent most of her life on a very harsh treatment. I’ve struggled a lot all this time, but we are now cured of MDR-TB and happy and very proud.
Nondusimo's story
Nondusimo, an MSF support group worker
Diagnosed with HIV and with multi-drug resistent tuberculosis (MDR-TB), Nondusimo came to live with her brother, sister-in-law and two children in Khayelitsha township, Cape Town, where she received treatment and counselling at MSF’s Ubuntu clinic in the heart of Khayelitsha.
Treatment for MDR-TB involves upwards of 15 pills per day and injections. Co-infection with HIV further complicates the treatment with additional anti-retroviral pills, and associated side effects ranging from nausea, vomiting, diarrhoea, dizziness, loss of appetite, weight redistribution and other sensitivities. Today, she helps counsel and support others coping with the same challenges.
