AIDS Stigma
Busi has been too weak to get out of bed for the past two months. Her tiny eight-month-old baby, Nomsa, hangs limply in her listless arms. Even crying takes too much effort.
Her home-based carer changes the sheets, which are streaked yellow with diarrhoea. She asks Busi’s mother how she is coping, but the mother shrugs and turns away so that we cannot see her tears. Five small children turn their worried faces towards us.
“AIDS is not spoken about here,” whispers the carer in warning, as I prepare to interview Busi.
Thoko’s breath rasps in her throat. She leans forward to take a sip of water from the cup held to her lips by her grandmother. “I have told my family what is wrong with me,” she tells me slowly. “But it is my boyfriend’s family. They might make trouble.”
Her boyfriend, with whom she has a child, died a few months back. She gets small change from his family for her daughter.
Miriam’s mother takes me outside. “I don’t mind if my daughter tells you her story,” she says. “But this place where we are staying belongs to my brother. He doesn’t want people to know about this AIDS business. I am afraid that if this gets in the newspapers, he will make us leave. And then where will we go?”
Busi, Thoko, Miriam, Baby Nomsa. They parade before my mind’s eye. No flesh, fat or muscle left on their suffering bodies. They know, we know, their families know that this is AIDS. But as long as that small word is not spoken in their communities, the pretence can be maintained.
With five million South Africans living with HIV, this is denial on a grand scale.
“I don’t know why people don’t want to talk about it or accept it,” says Thulisiwe Luhabe, an HIV positive nurse. Her life actually improved once she disclosed to her matron that she was HIV positive.
“I was working in the medical wards, exposed to so many infections and I was getting sick all the time,” says Luhabe.
Once she told the matron she had HIV, she was given a month’s sick leave then moved to wards where she wasn’t constantly in contact with people with infectious diseases.
But others who have disclosed have not been that lucky. Think of Gugu Dlamini, stoned to death in a Durban township by local youth who felt she was bringing their area into disrepute for telling people she had HIV. How many of her attackers have since died of AIDS?
Pretty’s mother would talk about her daughter’s HIV status. But that was because the teenager with the sweet high voice (who has since died) was infected by a rapist. Others who have contracted HIV through blood transfusions will also talk about being HIV positive.
But the stigma associated with those who get HIV from consensual sex is still extremely high.
Most adults have sex. Yet we seem to become a nation of self-righteous hypocrites when confronted by sexually transmitted HIV.
Driving this stigma is the seething accusation that if you had sex willingly, then you asked for it. As if anyone, caught up in the dizzy hormones of desire, could possibly think of a death and disease at that moment.
But time and again, I have been told that AIDS is a Biblical punishment brought down on a promiscuous world that has lost its morality.
I met a man recently who had lost two daughters within two years to AIDS. He was so angry, particularly with his younger daughter.
“How could she still go with the boys, after she saw what happened to her sister? How could she? I am so angry that I don’t even feel sorry.”
Bongi Zulu’s kind lover became cruel and cold once she told him about her HIV status ‘ even though he was the one who had infected her.
Perhaps we want to blame those who get HIV because we are so afraid. If we can externalise the blame, somehow locate it within the realm of “they” ‘ the loose bitches and the playas ‘ then it won’t affect us.
Medical anthropologist Professor Suzanne Leclerc-Madlala says AIDS stigma in Africa is made worse by the disease’s association with witchcraft.
“Because the disease is invisible, takes a long time to manifest, and is linked to illicit sexual activity, there are associations with witchcraft,” she says. “People often say they have been bewitched rather than accept they have HIV.”
Besides, she adds, sex has always been a taboo subject in this country.
“Now suddenly this disease has forced us to talk about sex, and this is very uncomfortable for most people,” she says.
AIDS counsellors countrywide have often said that those who accept their HIV status live longer, as they are free from the secret burden.
“This is why the women with HIV live longer. The men are the worst at admitting,” a Soweto counsellor told me.
AIDS stigma is complicated and multi-layered. But it’s result it simple. Stigma prevents us from comforting those who need it most. People are living in mental anguish, alone with HIV and in fear of being discovered. Others have retreated hopelessly to their homes to die of opportunistic diseases that can be cured. Stigma and prejudice are making us inhuman.
Author
Kerry Cullinan is the Managing Editor at Health-e News Service. Follow her on Twitter @kerrycullinan11
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AIDS Stigma
by Kerry Cullinan, Health-e News
November 28, 2002