Some 30 years into the HIV/AIDS epidemic, stigma and discrimination continue to take a toll. For example, in South Africa, some young, HIV positive mothers can find themselves homeless and shunned by their families. But there is a place where they can find shelter.
It’s called Nkosi’s Haven – named after Nkosi Johnson, a young, black South African boy. Nkosi was the star of the 13th International AIDS Conference in Durban in 2000. Infected with HIV at birth, the frail child called for better medical treatment and encouraged HIV positive people to be open about their status.
“Care for us and accept us,” he said, “We are all human beings.” Nkosi Johnson died a year later at age 12.
Nkosi johnson, 13th International Aids Conference, Durban, 2000
Nkosi and his adoptive mother Gail Johnson, a white South African, had been working to help young HIV positive mothers. Women just like his biological mother. Nkosi’s Haven was founded in 1999 in a Johannesburg suburb.
“We’ve got the two houses next door to each other in Berea, where I have 9 moms and 47 kids. And then on the First of December last year we officially opened our Nkosi’s Haven Village, which is a main house with lots of cottages. And here I’ve got 31mothers and 94 children,” says Johnson.
The village is on two and a half acres of land just south of Johannesburg.
Timing is critical
Prospects for haven residents have improved greatly over the last 10 years. That’s because antiretroviral drugs – or ARVs - are much more available. But timing is critical.
Hillary Clinton and Gail Johnson
“I’m not losing as many moms or children. But we had the death of a baby this year. We’ve got longer life span with the mothers. They look a lot healthier. But also because of the denial still in so many people’s minds a lot of the moms are coming just too late. They weigh about 24 kgs and sometimes we can’t turn them around,” she says.
Denial, stigma and discrimination, says Johnson, greatly reduce the chances of survival for infected mothers and children.
Johnson says, “You might have a 26 year old woman living with her parents and the parents will keep her hidden. So she will not be able to access the drugs because she’ll be put in the corner type of situation. Then a neighbor might intervene and it’s too late. It’s too late to turn her around even if she gets put on ARVs.”
Fear, ignorance and taboos
“A lot of the moms are refusing to be tested when they’re pregnant. So, for example, a lot of my toddlers, my two or three year olds, are infected and they shouldn’t be,” she says.
Gail Johnson says culture and tradition can make talking about sex difficult or even taboo. And that can open the door to HIV infection.
“You know, it’s sexually transmitted in South Africa. You know, that’s just nonnegotiable. But in the black community, people don’t talk sex very comfortably or easily. And because it’s a sexually transmitted disease they find it difficult to deal with. You know what I mean. A parent has to be open about sex to be able to discuss HIV/AIDS with their teenage kid,” she says.
Upon arrival at Nkosi’s Haven, young mothers are counseled first about accepting their HIV positive status.
“Very often,” says Johnson, “we find the mom has not disclosed to her children that she is positive. So, you’ve got kids moving in with us where everyone just talks HIV/AIDS because we normalize it totally. And (those children) are wondering why the hell they’re here. So mom is counseled around disclosure to her children. And then another step further after that is mom is counseled around having her children tested if they have not been tested.”
To break the cycle, Johnson says young women need to be empowered enough to say no to unprotected sex.
“You have to teach them the physiological side of sex,” she says, “the psychology of sex. You work at building their esteem, their ego, which, in turn, will allow them to say no. But at the moment they are so vulnerable because in their culture the woman hasn’t much say at the best of times.”
At the same time, she says boys must be taught that it’s ok to have smart, strong women in their lives.
Nkosi’s Haven relies on donations from many sponsors to keep its doors open. Johnson says she hopes 2011 will bring a better economy in South Africa so the haven’s projects can continue to grow.