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Stigma and silence threaten AIDS workers' efforts

[SWAZILAND] AIDS activist Pholile Dlamini and companion. IRIN
AIDS activist Pholile Dlamini and companion
Discouraged AIDS activists reported this week that they are not only failing to overcome the social stigma attached to people who are HIV-positive, but are losing ground in their efforts to encourage condom use. "The picture is mixed. We do have new AIDS education initiatives, and programmes to halt mother-to-child transmission of the HI virus, and new anti retroviral drugs. But there is not a health worker in the kingdom who has found a way to convince Swazis to change the sexual behaviour that breeds AIDS," said Pholile Dlamini, an AIDS activist and Manzini city council consultant. Swaziland's adult HIV infection rate of 38.6 percent is due in part to the attitude of denial most Swazis have towards the epidemic, health organisations said. "There is sheer terror about AIDS. People know it is incurable. They won't get tested, or, if tested, they postpone getting the results. When they find they are HIV positive, they won't acknowledge their condition publicly," Dlamini told PlusNews. Because few Swazis declare their HIV-positive status, the true extent of the epidemic remains hidden. As if to exemplify how unusual public disclosure remains, on Friday both the nation's daily newspapers carried front page stories about a woman who admitted she was HIV-positive status before the government's constitutional drafting committee. "So long as we do not want to learn about HIV/AIDS, it will wipe us all out - and you are getting this from someone who has tested several times, and was proved HIV-positive," Buyile Mkhatshwa, a farmer's wife in rural Siphofaneni in the eastern Lubombo region, told the committee. The committee was touring the region, collecting views from residents about the draft constitution proposed by King Mswati. Mkhatshwa pleaded for a constitution that would provide for children left orphaned when their parents died of AIDS. She was nearly shouted down by angry neighbours, who reportedly cried "Shame! Shame!" and demanded that she be removed from the gathering. But Mkhatshwa stood her ground. "I do not care about those trying to shout me down, but I mourn for your children because they will be orphaned," said Mkhatshwa, a mother of four. AIDS activists admired her courage, but said the episode was consistent with Swazi denial of the disease. "With nearly 40 percent of adults HIV-positive - and the figure goes up to half of all young adults - it is shocking that when just one person declares herself HIV-positive, it is still front page news," an official with the health ministry told PlusNews. Phefeni Vilakti, a training officer with The AIDS Information and Support Centre in Manzini, noted that "the response of the people of Siphofaneni was typical. They were afraid that people would think AIDS was in their community". Stigma and denial was so rampant it was tearing families apart. "I was told to leave home when I told my family I was HIV-positive. I'm not the only one this has happened to," said Nozipho Lushaba. Lushaba belongs to the Swaziland AIDS Support Organisation (SASO), where people with HIV/AIDS exchange information and find companionship. SASO was launched five years ago with a mandate to bring HIV/AIDS into the open by having members publicly declare their HIV-positive status. The approach was hailed as a way to counter a belief that AIDS was "a white man's or a prostitute's disease", and put a human face on the epidemic. But membership has remained small. The National Emergency Response Committee for HIV and AIDS (NERCHA), which funds AIDS-prevention programmes, is among the organisations disappointed that education campaigns have not dispelled Swazis' superstitions about the disease. "We find people are fairly well informed about AIDS. But it is not changing their behaviour, and it has not affected the way they treat HIV-positive people," NERCHA director Derrick von Wissel told PlusNews. "At some point, shame was attached to AIDS. It's only a medical condition, but people treat it as a moral failure," said Dr. Thandie Malepe of the National Psychiatric Centre. Malepe feels the prejudice was instilled by early AIDS information programmes that suggested it was a person's own fault if he or she contracted a preventable disease, perhaps by failing to use a condom, or engaging in sex with multiple partners.

This article was produced by IRIN News while it was part of the United Nations Office for the Coordination of Humanitarian Affairs. Please send queries on copyright or liability to the UN. For more information: https://shop.un.org/rights-permissions

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