Nkosi’s passion

Born Xolani Nkosi, the little black boy with the small frame and big eyes was thrown into the international spot light in his fight to be admitted into school. He was HIV-positive. At the time there was no policy to deal with the admission of an HIV-positive child, despite a Constitution that guaranteed the right to an education, and very little was understood about the methods of transmission. Nkosi won his right to an education, but it was his concern that no HIV-positive mother should be separated from her child, infected or not, which gave birth to the first Nkosi’s Haven on the Berea-Hillbrow border, and the beginning of an amazing legacy.

By David A Steynberg

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The purple Jacarandas line the narrow street outside the high-walled Houghton estate, inside which terminally ill gay men cough and come to die. It’s 1991 and the world has known about the HIV/Aids death-sentence for around 10 years now. It is a “gay disease”, according to a conservative, church-going public. A “self-inflicted”, “serves you right” kind of disease. Inside this residence, informally named the Guest House, a little two-year-old boy named Nkosi sits on the lap of a “heterosexual AWB former pilot who crossed the colour line”. Both the little black boy and the white Afrikaner have the “gay disease” in their blood.
“It was the beginning of the black heterosexual pandemic,” says a husky-voiced Gail Johnson, the controversial, round-spectacled mother figure of child Aids-activist, Xolani Nkosi Johnson.
Sitting in a high-backed chair, her darkened office and long, straightened, fire-red hair is momentarily brightened by the oversized yellow lighter held to the cigarette between her lips. Based at Nkosi’s Haven Village, characterized by its colourful cottages, the facility sits nestled atop a misty hill overlooking the road that leads to Orange Farm and Sebokeng on Johannesburg’s far South Rand. Here, over 30 destitute mothers, their children and orphans, all either affected or infected by HIV, live in a kibbutz-style system where all activities are shared among those old and healthy enough to work. In exchange, they are fed three meals a day, receive counseling, earn a stipend and their children are schooled from preschool to the completion of their tertiary studies.
It has been 10 years since one of the world’s most vocal child Aids activists entered a coma he would never wake up from, passing away in the haven he inspired. During this time two Nkosi-inspired homes for HIV-positive, destitute mothers and their children have become fully functional, with a similar-modeled farm slowly taking shape; prevention of mother to child transmission (PMTCT), something Nkosi criticized the Mbeki administration of not taking seriously enough, is every HIV-positive mother and her unborn child’s right to receive; and no HIV-positive child can today be discriminated against by not being admitted into a school based on their status. Gail believes that if Nkosi was alive today, the 22-year-old would be happy about the progresses made.
Nkosi’s story begins on February 4, 1989 when 21-year-old Nonhlanhla Daphne Nkosi gives birth to her second child, a boy she names Xolani – her first was a girl she named Mbali.
Living in Newcastle, KZN Nonhlanhla decides to leave the small supermarket she works at for a better life in Johannesburg. Moving in with her maternal grandmother in the township of Daveyton, Nonhlanhla gets a job at a hair dresser in the Benoni CBD washing and sweeping up white women’s hair clippings.
But Xolani is a sickly child, his chest forever wheezing, his nose running and refusing to feed. A worried Nonhlanhla takes her baby to the local clinic where he is diagnosed with TB. Soon after this, she will discover that she is HIV-positive; this means her son has the virus too.
“Nkosi must have been one of the first infected children because he was born in ’89,” Gail tells people. “We got a call at the Guest House one day asking if we took in children. I thought ‘why not?’ and then I thought ‘how?’”
This was the moment the pandemic changed for Gail. “Suddenly we had a little infected black kid who was two years old who was obviously diagnosed when his mother was diagnosed. She lived in Daveyton and was petrified to take him back home.”
Nonhlanhla takes Xolani to the Aids Clinic at Hillbrow Hospital where she hears about a hospice-type facility in the leafy, up market suburb of Houghton. She is told that it serves mainly white men afflicted with Aids, but she is assured that they will inquire if space can be made for Xolani. It is agreed, and a cot is prepared at the Guest House.
“All the gay boys adored him and pampered him,” Gail says, attempting to light another cigarette – the gas and flint agreeing to disagree. She adds that because HIV made everyone equal in the home, Nkosi (as he ended up being referred to because the click in his name was too difficult for some in the home to pronounce) remained protected from the discrimination that existed outside the estate walls. “Many gay men were only finding out their status or their friends were lying in the Guest House. It was a terrible time for them,” Gail remembers, her voice straining. “What was tragic was one guy who, when he walked in and was hugged by us, burst into tears. He hadn’t been physically touched in three years! Not a hand shake, not a hug…nothing!”
It is probably unsurprising that costs overtook income – a result of a non-supportive and highly homophobic community. In November 1991 a decision is taken to close the Guest House’s doors at the end of January the following year. But what to do with Nkosi? His mother is still unable to care for him and Gail can’t bear putting him in another home. “I said I would take him – he knew us,” Gail says. “There was the Sacred Heart Foundation in Kensington and another place in Boksburg, but I thought how can you screw a little kid around like this? He goes from township sick into a hospital, into the Guest House and then into this place with more strangers - all in three years.”
Nonhlanhla was still working in Daveyton, according to Gail, and would ask if Nkosi could visit her. Gail always complied, emphasizing that she never “took” Nkosi away from Nonhlanhla, but that circumstances forced both women into this situation. “She gave him up because of circumstance. She had no alternative but to keep on working to put Mbali through school,” Gail explains. “She was petrified that the community would find out that she had an infected child because that made her infected too.”
By the time Nkosi turns five, he has been living with Gail, her husband, Alan and daughter Nicci for two years. He is part of the Johnson family and one of his favourite things is going to Kayalami because Alan is a member of the Guild of Motoring Journalists. While he is soon accepted by the Johnson's social circle, other women pull Gail aside and ask if she washes his bed linen separately, if she keeps his cutlery apart from the rest of the family's and if she wears gloves when picking him up.
“Nkosi taught people, by his very existence, that HIV was transmitted mother-to-child via blood or through sex,” she says. “And not by hugging him or by eating off the same spoon!”
Teaching Nkosi about his own disease was about teaching him his own responsibilities to himself and those around him. He had “baddies” in his blood, Gail would tell him, explaining that the vitamins she was giving him helped to fight off the baddies. “He also knew his baddies could be bad for someone else,” Gail says, adding that other mothers’ ignorance regarding HIV and infection often angered her. “Other people’s children were actually more dangerous to him because he was the one with the compromised immune system. They could sneeze on him; chicken pox could kill him.”
In one year Nkosi would learn the meaning of discrimination, fear, stigma and prejudice, as well as the answer to his question of “does everyone who has Aids, die?”
It is the beginning of 1997; Nkosi is seven turning eight and he keeps asking Gail why he is not in school yet. Gail has already applied for Nkosi to attend Melpark Primary in Melville. On the form, where it asks if Nkosi suffers from anything, Gail writes HIV/Aids. “Nkosi was well known in the community around the school,” Gail says. “If someone saw him at school and created havoc, I thought let’s rather be honest and have the havoc now before he gets admitted.”
An urgent governing body meeting is called where the admission of a little black, HIV-positive boy is discussed. Split down the middle, no decision is made on Nkosi’s admission. “The Star phoned me the next day informing me about the meeting,” Gail says. “One mother even wanted to wrap her child in Cling Wrap!”
While Gail fights to have Nkosi admitted - his plight making international headlines - his mother Nonhlanhla passes away in her sleep at her father’s house in Newcastle. “His mom’s death really drove home the reality of Aids at the time,” Gail tells us. “He said, ‘mommy never said goodbye’. And that ‘it’s not right for children to be separated from their mommies because of Aids.’”
This is the moment Nkosi the boy becomes Nkosi the Aids activist. He continually asks Gail what is happening with the other children who have Aids. He knows they exist because he sees them on the News. Are they also going to be separated from their mommies like he was?
“I just wish that the government can start giving AZT to pregnant HIV mothers to help stop the virus being passed on to their babies…I think government must start doing it because I don’t want babies to die,” Nkosi bravely says at the opening speech at the 13th International Aids Conference in Durban in 2000.
While many people have an idealised idea of Nkosi, speaking to Gail it soon becomes clear that he was a normal, sometimes naughty, little boy. Lighting yet another cigarette, Gail paints a picture not too many people are familiar with.
When Nkosi was finally admitted to the school Gail fought so hard to get him into, Gail was told that she shouldn’t expect a report card. She understood. Nkosi had been touring a lot and was sometimes not at school. But that wasn’t the reason. Nkosi hadn’t attended his classes all year! He would often be spotted walking the corridors and greeting the teachers or talking with the gardener. Even the school principal let him get away with it. He would often, according to the principal, come to the office and ask if he could have a pizza.
Nkosi loved pizza, according to Gail. But she rarely allowed him to eat it because its oiliness gave him diarrhea. It was an obsession that drove him to steal money out of a woman’s purse one Sunday while she was praying in church.
Despite this, Gail remembers Nkosi as a child with a compassion like no other. His wish for HIV-positive mothers and their children to remain together led to the first Nkosi’s Haven being opened on April 14, 1999.
“He loved that place, and he was like royalty there,” Gail says. “He couldn’t understand why people were being kicked out of their homes just because they were infected. The moms and their children were telling him their stories. If Nkosi could have opened 50 bloody Havens a year he would have – no doubt about it. That was his compassion!”