Remarkable
People in History
NKOSI
JOHNSON - The face of AidsT
The
following is the speech Nkosi Johnson, 11 years old, made for
the opening ceremony of the 13th International AIDS Conference
in Durban:
"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
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 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!"
He
was born Xolani Nkosi in a township slum east of Johannesburg.
He never knew his father. His mother, Nonthlanthla Daphne Nkosi,
was HIV-positive and passed along the virus to her unborn baby.
He became a statistic-one of more than 70,000 children born
HIV-positive every year in South Africa, where an estimated
one-half of the population under the age of 15 will die of AIDS-related
causes over the next decade.
But
Xolani was a fighter. He survived beyond his second birthday,
which is unusual in HIV-infected babies. As the disease began
to sap his mother's strength, he was admitted with her to a
crowded AIDS care center in Johannesburg. It was there that
Gail Johnson, a volunteer worker, saw the wide-eyed Zulu boy
and his ailing mother. She was obviously dying, and he was living
on borrowed time. "It was a very personal and mutual understanding,"
says Johnson. "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."
His mother readily agreed for Johnson to become Nkosi's foster-mother.
As Nkosi Johnson he had a home in a neat Johannesburg suburb
and a wide circle of friends at Nkosi's Haven, the AIDS care
center Johnson founded and named after him. Nonthlanthla Nkosi
died of an AIDS-related illness in 1997. In the same year, Gail
and Nkosi Johnson won a different battle. When she tried to
enroll him in primary school, there was opposition from some
parents because of his HIV-positive status. Johnson went public
with a complaint and won her case. Nkosi went to school.
That controversy made Nkosi a national figure in the campaign
to destigmatize AIDS, and provincial education departments across
the country were required to draw up new policies. His big moment
came last July, when he addressed delegates at the international
AIDS conference in Durban. A tiny figure in a shiny dark suit
and sneakers, nervously holding a wireless microphone, Nkosi
Johnson, all of 11 years old, held an audience of 10,000 delegates
in rapt, occasionally tearful silence as he told the story of
his birth and his life. "Please help people with AIDS," he said.
"Support them, love them, care for them."
Later
that year 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."
Though probably the longest surviving child AIDS victim in South
Africa, Nkosi was clearly not well when he returned from his
U.S. trip in October. He had a quiet Christmas, then he collapsed.
Diagnosed with brain damage, he had several seizures and became
semicomatose. Yet he hung on. "Look at him," Johnson
told a local newspaper. "Half the size of bloody nothing
and still fighting."
The story of Nkosi Johnson has galvanized AIDS-awareness campaigners.
With at least one of every 10 South Africans HIV-positive, the
country faces a public health disaster that will hit poor, populous
black communities the most. Nkosi once said he wished he were
a white person because he never saw a white person get sick.
Dr. Zola Skweyiya, Minister for Social Development, warned last
year that the AIDS epidemic could result in blacks becoming
a minority in their country. Editorialized the national Sunday
Times: "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. 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 that Nkosi has had to suffer, he is one of
the lucky ones, says Johnson. "He was accepted, he was
loved." Among those calling at the Johnson home last week
were schoolfriends whose parents once warned them not to get
close to him. The children at Nkosi's Haven are also missing
the little boy who organized their cops-and-robbers game and
always wanted to be the top cop. Contributions to Johnson's
aids care trust have allowed for the opening of a second Nkosi's
Haven in the Johannesburg townships this month. Johnson hopes
there will be many more. Nkosi's name-in Zulu it means Lord,
or King of Kings-will live on.
