Nkosi Johnson's enduring legacy
30 November 2012
South Africa's famous child Aids activist, Nkosi Johnson, was born with HIV and died at the age of 12 in 2001. At the time of his death, he was the longest-surviving child born with HIV in the country.
He was posthumously awarded the first KidsRights Foundation's international Children's Peace Prize in Rome in November 2001 for his efforts in support of the rights of children with HIV/Aids, and his legacy continues to live on through Nkosi's Haven, which houses and supports HIV-positive mothers and children.
Nkosi rose to international prominence in July 2000 when he delivered his self-written address, televised worldwide, to 10 000 delegates at the 13th International Aids Conference in Durban.
"Hi, my name is Nkosi Johnson," he began. "I am 11 years old and I have full-blown Aids. I was born HIV-positive."
More than a statistic
Nkosi was born Xolani Nkosi on 4 February 1989 in a township east of Johannesburg. His mother, Nonthlanthla Daphne Nkosi, was HIV-positive and passed the virus on to her unborn child. He became a statistic: one of more than 70 000 children born HIV-positive in South Africa every year.
Xolani was a fighter. He survived beyond his second birthday, unusual in HIV- infected babies. As the disease began to take its toll on Daphne, she and Nkosi were admitted to an Aids care centre in Johannesburg.
It was there that Gail Johnson, a volunteer worker, first saw the baby boy and his ailing mother.
"It was a very personal and mutual understanding," Johnson said. "I had had a graphic encounter with an Aids death close to my family, and I wanted to do something more than just talk about it. And there was Nkosi. All I had to do was to reach out to him."
Daphne readily agreed for Gail to become Nkosi's foster mother.
"I know she loved me very much and would visit me when she could," Nkosi said of his mother in his July 2000 speech.
"And then the care centre had to close down because they didn't have any funds. So my foster mother, Gail Johnson, who was a director of the care centre and had taken me home for weekends, said at a board meeting she would take me home. She took me home with her and I have been living with her for eight years now."
Daphne Nkosi died of an Aids-related illness in 1997.
"She went on holiday to Newcastle - she died in her sleep," Nkosi said.
"And mommy Gail got a phone call and I answered and my aunty said, please can I speak to Gail? Mommy Gail told me almost immediately my mommy had died and I burst into tears."
Fighting for school
Also in 1997, Gail Johnson attempted to enrol Nkosi - then eight years old - at a school in the Johannesburg suburb of Melville. When the boy's HIV status was discovered, there was immediate opposition from teachers and parents.
"Mommy Gail went to the school, Melpark Primary, and she had to fill in a form for my admission and it said does your child suffer from anything, so she said yes: Aids," Nkosi said.
"My mommy Gail and I have always been open about me having Aids. Then she phoned the school, who said we will call you and then they had a meeting about me.
"Of the parents and the teachers at the meeting, 50% said yes and 50% said no."
Gail went public with a complaint and won her case. Nkosi went to school.
"The Aids workshops were done at the school for parents and teachers to teach them not to be scared of a child with Aids," Nkosi said. "I am very proud to say that there is now a policy for all HIV-infected children to be allowed to go into schools and not be discriminated against."
Nkosi soon became a national figure in the campaign to de-stigmatise Aids, with provincial education departments across South Africa moving to draw up new policies.
Speaking to the world
His big moment came in July 2000, when he addressed delegates at the 13th International Aids Conference in Durban.
A tiny figure in a shiny dark suit and sneakers, 11-year-old Nkosi Johnson held an audience of 10 000 delegates in occasionally tearful silence as he told his story.
"Care for us and accept us - we are all human beings," he said at the conclusion of his speech. "We are normal. We have hands. We have feet. We can walk, we can talk, we have needs just like everyone else. Don't be afraid of us - we are all the same."
In October 2000 he took the same message to an Aids conference in Atlanta, Georgia.
"It is sad to see so many sick people," he said. "I wish everybody in the world could be well."
'Half the size of nothing and still fighting'
But Nkosi was not well when he returned from the US. He had a quiet Christmas, and then collapsed. Diagnosed with brain damage, he had several seizures and became semi-comatose. Yet he hung on.
"Look at him," Gail told a local newspaper. "Half the size of bloody nothing and still fighting."
Nkosi died at 5.40am on Friday 1 June 2001.
"We chatted about death ... He had strong feelings about letting me down," Gail said. "I told him I would miss him and no one could take his place."
He was given a hero's burial in Johannesburg in a funeral attended by thousands of mourners.
"It's a great pity that this young man has departed," former President Nelson Mandela told reporters. "He was exemplary in showing how one should handle a disaster of this nature.
"He was very bold about it and he touched many hearts."
Taking the fight further
The story of Nkosi Johnson galvanised Aids-awareness campaigners.
After the boy's death, South African Social Development Minister Zola Skweyiya acknowledged Nkosi's contribution.
"We South Africans - and all others on this continent and in the world - have to learn to acknowledge and treat with humanity those who are living with Aids," Skweyiya wrote in the Sunday Times.
"There can be no better monument to Nkosi, the child who has made us confront our frail humanity and our own deepest fears, than this."
For all the misery Nkosi had to suffer, he was one of the lucky ones, according to Johnson. "He was accepted, he was loved."
Part of his legacy lives on through Nkosi's Haven, which has expanded to include projects in which people living with Aids are given care and employment in communal environments.
"At Nkosi's Haven, all of our mothers and children, currently totalling approximately 160, live in total freedom at one of our two locations in Johannesburg," the organisation's website reads.
"Through all of the work we do, we ensure that our residents learn how to live with Aids, not die from it.
''He's given Aids a face and allowed people who are still afraid of being associated with Aids to grieve openly," Johnson said. "Most importantly perhaps, his fight and his bravery have given hope to many, many people."
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