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In S. Africa, Stigma Magnifies Pain of AIDS

Many Still See Disease as Fatal, Shameful

By Craig Timberg
Washington Post Foreign Service
Friday, January 14, 2005; Page A14

SOWETO, South Africa -- The very moment he learned he had contracted HIV, Sibusiso Mlangeni said he got his first taste of the stigma that comes with it. "You've been messing around," the nurse at the AIDS clinic scolded him. "You are HIV-positive."

The words delivered a wallop of shock and shame for Mlangeni, 28, who had a steady girlfriend and hardly considered himself promiscuous. But the nurse's comment, made one year ago, hinted at what lay ahead as news of the diagnosis spread.

Former South African president Nelson Mandela, center, attended the funeral of his eldest son last week with wife, Graca Machel, left, and grandson. Mandela announced publicly that his son had died of an AIDS-related illness. (Themba Hadebe -- AP)

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His father, a retired security guard who had badgered Mlangeni about losing too much weight, declared, "You are going to die." His sister, a nurse, asked Mlangeni not to stand near her. Soon he was given his own set of dishes, a crude but common reaction from families under the false impression that HIV can spread through casual contact.

"I had my own special plate," said Mlangeni, a volunteer at a hospice in this sprawling township outside Johannesburg. His bright, ready smile tightened into a grimace as he recalled his feelings of rejection. "I had my own special cup. I had my own special blanket, everything."

Last week, in announcing that his eldest son had died of complications of AIDS, Nelson Mandela urged South Africans to stop treating the disease as a sickness for which "people will go to hell and not to heaven."

The announcement by Mandela, the former president and a national icon, was a highly public attempt to fight the stigma that has accompanied AIDS across South Africa, hampering both testing and timely treatment of the disease, even as it has become the country's top killer, with 1,000 people a day dying from its ravages, according to the United Nations.

The message, like appeals made by other regional leaders in the past few years, was greeted with relief by people suffering from the affliction. Yet many interviewed in recent days said they were still treated as contaminated sinners by neighbors, friends and their own families. Some are ordered to use separate toilets or to wash outside. Others are banished.

A study of 144 HIV patients at two Johannesburg hospitals found that 38 percent had not told a single family member that they had HIV, and 21 percent had not told their sexual partners. One in 10 said diagnosis of the disease was followed by suicidal thoughts. A small number of women reported that their partners beat them after learning of the presence of the infection.

Such violent reactions remain rare, although an AIDS activist was killed outside Cape Town in 2003 after she told a group of men who had gang-raped her that she had HIV. Another woman with AIDS was stoned to death in a township near Durban in 1998. Simple shunning is far more common and deeply hurtful, say those with the virus. The reaction compounds feelings of terror and self-loathing that can accompany the diagnosis of a disease that many here believe, incorrectly, to be fatal in all cases and contracted exclusively through promiscuous sex.

Although heterosexual contact is the primary means of transmission throughout Africa, researchers say that HIV infection has now reached far beyond those who have multiple sex partners. In South Africa, according to U.N. estimates, one of every five people between 15 and 49 is infected with HIV.

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