Speech given at the Opening ceremony of the 13th International AIDS Conference in Durban, July, 2000
“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 center for HIV / AIDS-infected people. My mommy was obviously also infected and could not afford to keep me because she was very scared that thecommunity 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 center had to close down because they didn’t have any funds. So my foster mother, Gail Johnson, who was a director of the care center 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.
She has taught me all about being infected and how I must be careful with my blood. If I fall and cut myself and bleed, then I must make sure that I cover my own wound and go to an adult to help me clean it and put a plaster on it.
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. 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.
And in the same year, just before I started school, my mommy Daphne died. She went on holiday to Newcastle- she died in her sleep. 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. 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.
Then I saw my father for the first time and I never knew I had a father. He was very upset but I thought to myself, why did he leave my mother and me? And then the other people asked mommy Gail about my sister and who would look after her and then mommy Gail said ask the father.
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.
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 to pregnant HIV mothers to help stop the virus being passed on to their babies. Babies are dying very quickly and I know one little abandoned baby who came to stay with us and his name was Micky. He couldn’t breathe, he couldn’t eat and he was so sick and Mommy Gail had to phone welfare to have him admitted to a hospital and he died. But he was such a cute little baby and I think the government must start doing it because I don’t want babies to die.
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 center 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!”
Nkosi Johnson, July, 2000