Ignorance is the crucial reason the epidemic has run out of control. Surveys say many Africans here are becoming aware there is a sexually transmitted disease called AIDS that is incurable. But they don't think the risk applies to them. And their vague knowledge does not translate into changes in their sexual behavior. It's easy to see why so many don't yet sense the danger when few talk openly about the disease. And Africans are beset by so plentiful a roster of perils - famine, war, the violence of desperation or ethnic hatred, the regular illnesses of poverty, the dangers inside mines or on the roads - that the delayed risk of AIDS ranks low.
The Outcast
To acknowledge AIDS in yourself is to be branded as monstrous. Laetitia Hambahlane (not her real name) is 51 and sick with AIDS. So is her brother. She admits it; he doesn't. In her mother's broken-down house in the mean streets of Umlazi township, though, Laetitia's mother hovers over her son, nursing him, protecting him, resolutely denying he has anything but TB, though his sister claims the sure symptoms of AIDS mark him. Laetitia is the outcast, first from her family, then from her society.
For years Laetitia worked as a domestic servant in Durban and dutifully sent all her wages home to her mother. She fell in love a number of times and bore four children. "I loved that last man," she recalls. "After he left, I had no one, no sex." That was 1992, but Laetitia already had HIV.
She fell sick in 1996, and her employers sent her to a private doctor who couldn't diagnose an illness. He tested her blood and found she was HIV positive. "I wish I'd died right then," she says, as tears spill down her sunken cheeks. "I asked the doctor, 'Have you got medicine?' He said no. I said, 'Can't you keep me alive?'" The doctor could do nothing and sent her away. "I couldn't face the word," she says. "I couldn't sleep at night. I sat on my bed, thinking, praying. I did not see anyone day or night. I ask God, Why?"
Laetitia's employers fired her without asking her exact diagnosis. For weeks she could not muster the courage to tell anyone. Then she told her children, and they were ashamed and frightened. Then, harder still, she told her mother. Her mother raged about the loss of money if Laetitia could not work again. She was so angry she ordered Laetitia out of the house. When her daughter wouldn't leave, the mother threatened to sell the house to get rid of her daughter. Then she walled off her daughter's room with plywood partitions, leaving the daughter a pariah, alone in a cramped, dark space without windows and only a flimsy door opening into the alley. Laetitia must earn the pennies to feed herself and her children by peddling beer, cigarettes and candy from a shopping cart in her room, when people are brave enough to stop by her door. "Sometimes they buy, sometimes not," she says. "That is how I'm surviving."
Her mother will not talk to her. "If you are not even accepted by your own family," says Magwazi, the volunteer home-care giver from Durban's Sinoziso project who visits Laetitia, "then others will not accept you." When Laetitia ventures outdoors, neighbors snub her, tough boys snatch her purse, children taunt her. Her own kids are tired of the sickness and don't like to help her anymore. "When I can't get up, they don't bring me food," she laments. One day local youths barged into her room, cursed her as a witch and a whore and beat her. When she told the police, the youths returned, threatening to burn down the house.
But it is her mother's rejection that wounds Laetitia most. "She is hiding it about my brother," she cries. "Why will she do nothing for me?" Her hands pick restlessly at the quilt covering her paper-thin frame. "I know my mother will not bury me properly. I know she will not take care of my kids when I am gone."
Jabulani Syabusi would use his real name, but he needs to protect his brother. He teaches school in a red, dusty district of KwaZulu-Natal. People here know the disease is all around them, but no one speaks of it. He eyes the scattered huts that make up his little settlement on an arid bluff. "We can count 20 who died just here as far as we can see. I personally don't remember any family that told it was AIDS," he says. "They hide it if they do know."
Syabusi's own family is no different. His younger brother is also a teacher who has just come home from Durban too sick to work anymore. He says he has tuberculosis, but after six months the tablets he is taking have done nothing to cure him. Syabusi's wife Nomsange, a nurse, is concerned that her 36-year-old brother-in-law may have something worse. Syabusi finally asked the doctor tending his brother what is wrong. The doctor said the information is confidential and will not tell him. Neither will his brother. "My brother is not brave enough to tell me," says Syabusi, as he stares sadly toward the house next door, where his only sibling lies ill. "And I am not brave enough to ask him."
Kennedy Fugewane, a cheerful, elderly volunteer counselor, sits in an empty U.S.-funded clinic that offers fast, pinprick blood tests in Francistown, Botswana, pondering how to break through the silence. This city suffers one of the world's highest infection rates, but people deny the disease because HIV is linked with sex. "We don't reveal anything," he says. "But people are so stigmatized even if they walk in the door." Africans feel they must keep private anything to do with sex. "If a man comes here, people will say he is running around," says Fugewane, though he acknowledges that men never do come. "If a woman comes, people will say she is loose. If anyone says they got HIV, they will be despised."
Pretoria University's Mary Crewe says, "It is presumed if you get AIDS, you have done something wrong." HIV labels you as living an immoral life. Embarrassment about sexuality looms more important than future health risks. "We have no language to talk candidly about sex," she says, "so we have no civil language to talk about AIDS." Volunteers like Fugewane try to reach out with flyers, workshops, youth meetings and free condoms, but they are frustrated by a culture that values its dignity over saving lives. "People here don't have the courage to come forward and say, 'Let me know my HIV status,'" he sighs, much less the courage to do something about it. "Maybe one day ..."
Doctors bow to social pressure and legal strictures not
to record AIDS on death certificates. "I write TB or meningitis
or diarrhea but never AIDS," says South Africa's Dr. Moll.
"It's a public document, and families would hate it if anyone
knew." Several years ago, doctors were barred even from
recording compromised immunity or HIV status on a medical
file; now they can record the results of blood tests for
AIDS on patient charts to protect other health workers.
Doctors like Moll have long agitated to apply the same openness
to death certificates. MORE>>
