You were a guiding light for the HIV generation in the 1990s, a reluctant hero and activist who smiled bravely when you first hit the headlines, as your primary school grappled with how to deal with your disease.
I recall the image of you standing on that huge stage at Kings Park Stadium during the 2000 Durban Aids conference, the dark suit hanging on to your fragile and tiny frame. But your big heart was there for all to see.
You had been rehearsing your speech for weeks, knowing that what you said would be important. I remember how excited and nervous you were at the thought that then-president Thabo Mbeki would be in the audience, but I also remember your profound disappointment when you realised he had walked out before you had completed your speech.
But Nkosi, you did not need him to be there. Thousands heard you, millions continue to repeat and hold on to those words that continue to reverberate around the world. Your speech touched so many.
An extract from Nkosi Johnson’s speech
Hi, my name is Nkosi Johnson. I live in Melville, Johannesburg, South Africa.
I am 11 years old and I have full-blown Aids. I was born HIV-positive.
When I was two years old, I was living in a care centre for HIV/Aids-infected people. My mommy was obviously also infected and could not afford to keep me because she was very scared that the community she lived in would find out that we were both infected and chase us away.
I know she loved me very much and would visit me when she could. 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.
I know that my blood is only dangerous to other people if they also have an open wound and my blood goes into it. That is the only time that people need to be careful when touching me.
In 1997 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.
My mommy Gail and I have always been open about me having Aids. And then my mommy Gail was waiting to hear if I was admitted to school. 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 [to admitting me]. And then on the day of my big brother’s wedding, the media found out that there was a problem about me going to school. No one seemed to know what to do with me because I am infected. The Aids workshops were done at the school for parents and teachers to teach them not to be scared of a child with Aids.
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.
I hate having Aids because I get very sick and I get very sad when I think of all the other children and babies that are sick with Aids. I just wish that the government can start giving AZT [an antiretroviral medication] to pregnant HIV mothers to help stop the virus being passed on to their babies.
Because I was separated from my mother at an early age, because we were both HIV positive, my mommy Gail and I have always wanted to start a care centre for HIV/Aids mothers and their children. I am very happy and proud to say that the first Nkosi’s Haven was opened last year. And we look after 10 mommies and 15 children. My mommy Gail and I want to open five Nkosi’s Havens by the end of next year because I want more infected mothers to stay together with their children – they mustn’t be separated from their children so they can be together and live longer with the love that they need.
When I grow up, I want to lecture to more and more people about Aids – and if mommy Gail will let me, around the whole country. 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.
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.”
(An extract from Johnson’s speech, delivered in July 2000.)
I remember how excited you were at travelling to the United States to meet [the comedian] Robin Williams, who you said made you laugh. You always loved jokes… you would tell the worst jokes and laugh the loudest. I think that is where my son got his crazy sense of humour from.
Do you remember when you once visited us in Cape Town? You were so sick already and I remember waiting for you at Cape Town International Airport and having to hide my shock at seeing how much you had deteriorated. The crust of thrush sitting thick around your lips, the windbreaker completely dwarfing your frame.
You were so excited to be in Cape Town and immediately wanted to go and eat ribs – you ordered the biggest rack of ribs only to stare at it and asking if we could take it home – the thrush was so bad that it was impossible for you to eat most food. The diarrhoea became so severe that we rushed you to our doctor where she put you on a drip to tide you over, even though you should have probably been in hospital.
Nkosi, on the 18 July we will all return to Durban for the Aids conference. Some of us are returnees, others are newbies who joined the HIV activist bus along the way. I want to promise you that we will not go to Durban and accept empty rhetoric, lofty promises and articulate but empty political speeches.
No, we will go to Durban expecting to live up to your dream where no child is born HIV-positive and no child needs to be separated from their mothers because of disease.
This will be a conference where the South African government will hear your message. This we owe to you and to the many other children who faced the same fate.
Lala Kakuhle [keep up the good work] gentle, beautiful warrior. We will feel your presence in Durban, we will carry you in our hearts and songs.
All our love, admiration and respect
Anso Thom has been a health journalist in South Africa since the late 1990s and met Nkosi and his foster mother Gail Johnson around the time he faced being barred from enrolling at a local school because he disclosed his HIV status. She interviewed him several times and he used to visit her family when she moved from Johannesburg to Cape Town. Gail and Anso remain in contact.