In July 2000, a young frail South African took to the stage of the 13th International Aids Conference in Durban and changed the narrative surrounding HIV/AIDS in his country and in the greater world.

“Hi, my name is Nkosi Johnson,” he began. “I am 11 years old and I have full-blown Aids. I was born HIV-positive.”

That was enough to break any heart and get anyone thinking. After castigating the government for not doing enough for people like him, he concluded, “Care for us and accept us – we are all human beings. 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.” When Nkosi died at the age of 12 in 2001, he was given a deserved hero’s farewell by thousands of mourners. The ripples of his work are still being felt almost 15 years later.

The beginning

Born Xolani Nkosi on the 4th of February in 1989 in a town on the East Rand, no one could have expected the young HIV-positive boy to live let alone live and be a world-wide icon. Nonthlanthla Daphne Nkosi, his mother was HIV-positive and the boy was born infected. Daphne could not provide the care that the child needed and while at an AIDS care centre in Johannesburg, they met Gail Johnson, a volunteer worker. Gail would become Nkosi’s foster mother and when the care centre closed down, she took him home. Daphne would then die of an Aids related illness in 1997. She had maintained a functional relationship with her son even after Gail took him in and naturally, the boy was aggrieved. In his 2000 speech, he said of her, “I know she loved me very much and would visit me when she could.”

The young activist

“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, adding, “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.”

This was in 1997 when Gail Johnson attempted to enroll Nkosi at a school in Melville, Johannesburg but the teachers and parents opposed his enrollment. A very militant Gail took the issue to the public and ultimately won her case also opening doors for other children in similar conditions.

“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,” the young activist would later say. The fight for education had thrown him in the epicenter of activism and there was no going back now.

In July 2000, the world was to meet the small figured young boy with ideas bigger than him on the stage of the 13th International Aids Conference. It is here where he told the world, “Don’t be afraid of us - we are all the same.” In October of the same year, he carried his gospel to another conference in Atlanta Georgia in the United States of America. The world now knew of the little fighter who was alive to the realities of a world he was to leave shortly. Nkosi died the following year at 5.40 am on Friday the 1st of June 2001.

A legend who did not die

He might not be with the world now but his legacy lives on through Nkosi’s Haven which according to its webpage “has expanded to include projects in which people living with Aids are given care and employment in communal environments”.

“Through all of the work we do, we ensure that our residents learn how to live with Aids, not die from it,” the page also reads.

His adoptive mother, Gail Johnson says, “He’s given Aids a face and allowed people who are still afraid of being associated with Aids to grieve openly. Most importantly perhaps, his fight and his bravery have given hope to many, many people.”

Nkosi Johnson might have said “We are all the same” but no greater mistruth than this has ever been told. We are not the same, Nkosi was a cut above everyone else. He had a beautiful mind and beautiful heart. Have any words wiser than these been said of Aids? “I want people to understand about Aids to be careful and respect Aids. You can't get Aids if you touch, hug, kiss, hold hands with someone who is infected.” Once Aids is no longer a justification for segregation, a part of the war against it has been won. Nkosi was one of Africa’s first heroes. Writing for the Daily Maverick, one Anso Thom rightly called him the Hector Petersen of the Aids Generation. He should be celebrated.

Visit Nkosi’s Haven find out how you can help keep Nkosi’s legacy alive.