NKOSI JOHNSON DIDN’T FALL FROM A TREE
He advocated ARV treatment
THE 21st International Aids Conference to be held in Durban from today brings painful memories to Xolani Nkosi Johnson’s biological sister.
It was at this conference – hosted in 2000, also in Durban – where the then 11-year-old Nkosi Johnson made his famous speech about living with the virus.
Mbali Nkosi, 29, who lives in Daveyton, on the East Rand, said she felt like she was excluded from her brother’s life and legacy.
She said her family was not consulted or included in initiatives that involved his name.
“We ask ourselves what is going on every time we see him on television. He is portrayed as if he fell from a tree and had no family,” Mbali said.
She remembered how she struggled with her mother and brother.
“I am grateful that my mother met Gail Johnson because my brother might not have lived as long as he did. We lived in a shack. We would go to bed with cabbage and pap or bread and water. The environment was not conducive for his condition.
“My mother handed him over to Gail because she had no money and could not afford to buy his medication,” she said.
Mbali said her brother knew where he came from.
“He used to visit us and people would ask why he could not speak isiZulu. He knew only three words – and Those are the words I taught him. He knew his family,” she said.
Mbali was 14 years old when her brother died in 2001. She said she was not happy that her family continued to live in poverty while other people benefited from her brother’s name.
“I lived with my mother’s family in an RDP house. We were 17 in the house before me and my three uncles moved out. Now only two people are employed in the house. One is a cleaner and the other a security guard,” she said.
“Nkosi did not come to us, he was born with us. I had hoped that, my brother being published all over the world at least I would be taken care of. What hurts me is that he is out there and I am not getting anything from [profits] made out of his name,” she said.
Mbali believed that as the only surviving sibling of Nkosi she should have benefited from some initiatives, including a book written about her brother’s life.
“I am happy that his name is still out there and there are people who were assisted because of him and there are those who continue to benefit. That was God’s work. We, however, survive on God’s grace.”
Mbali said she had blocked out memories about her brother and no longer visited his grave at the Johannesburg cemetery.
“I last visited his grave five years ago. I am trying to close that door because it brings nothing but pain,” she said.
She said that, though she hung photos of her brother on the wall in their home, her cousins knew nothing about him. “They do not know that they are related to a person who made such a big difference in people’s lives because we do not talk about him.” IT TOOK 11-year-old Xolani Nkosi Johnson a week to compile the speech he delivered at the 13th International AIDS Conference in Durban in 2000.
According to his adoptive mother Gail Johnson, Nkosi recorded everything he wanted to say, and Johnson typed it. “He was all over the place. I asked him to stand next to me and he dictated it. I added only one word, which was ‘obviously’. I put it in chronological order. Those words were his words,” she said.
Johnson said Nkosi could not remember the whole speech because she had put it in chronological order.
“I said to him, ‘you are going to learn this’ no matter what because you are committed. We sat on the lawn and he learned it. We did not realise at the time that the virus was affecting his brain. We only realised afterwards because he started losing words. After the speech I burst with pride,” she said.
In his speech, Nkosi spoke about the pain of loosing his mother to the decease. “Mommy Gail told me almost immediately my mommy had died and I burst into tears. My mommy Gail took me to my mommy’s funeral. I saw my mommy in the coffin and I saw her eyes were closed, and then I saw them lowering it into the ground and then they covered her up.
“My granny was very sad that her daughter had died ... ever since the funeral, I have been missing my mommy lots and I wish she was with me, but I know she is in heaven. And she is on my shoulder watching over me and in my heart,” he said.
Nkosi, who was born HIV-positive, was taken in by Johnson at the age of three when a centre that cared for HIV-positive men was closed down.
Johnson recalled how Nkosi was sad when he heard that the government at the time believed that R495 was a lot of money to pay for antiretroviral treatment (ARV).
“I was watching the news with him when it came up and I swore. He asked me why I swore and I said the government was questioning the cost of medication to a pregnant woman that would assist in preventing the virus to go through to the baby. He said to me, ‘how can they say it’s too much’?
“I told him that when he speaks, he can challenge the government because he was infected,” she said.
In his speech, Nkosi pleaded with the government to provide ARVs.
As Nkosi delivered his speech, then president Thabo Mbeki walked out of the conference.
“I am not getting any profits made out of his name