BOOKS



We are all the Same
by Jim Wooten

"The author, an award-winning senior correspondent for ABC News, has written an extraordinarily moving account of a courageous South African boy's battle with AIDS that is also a scathing indictment of South African leaders who have failed to confront the AIDS epidemic in their country. Nkosi, born in 1989 in the former Zululand, was infected by his poverty-stricken mother, Daphne. As Wooten recounts, Daphne moved heaven and earth to insure that her son would be provided for after her own death and agreed to his adoption, at age three, by Gail Johnson, a white South African, who had met Nkosi at a hospice. A hero in her own right, Johnson nourished Nkosi's strong spirit, which gave out only when he died at the age of 12.

Before then, Johnson and Nkosi traveled internationally to gain support for Nkosi's Haven, a home for women and children with AIDS in South Africa. Looking at the larger picture, Wooten points out that Nelson Mandela refused to deal with the AIDS crisis because he was embarrassed to speak publicly about sex (a position he later said he regretted). Mandela's successor, Thabo Mkebi, has also hampered attempts to get antiretroviral drugs to AIDS victims, absurdly denying that the virus HIV exists. According to Wooten, 20% of South African girls are currently infected with HIV and 7,000 infants die of AIDS each month. This powerful account puts a human face on a catastrophic epidemic that grows worse daily."

Obituary:

Nkosi Johnson, the black face of Aids in South Africa, was a child who should not have died. The 12-year-old boy captured worldwide attention last July in Durban, when he chided his country's President Thabo Mbeki in front of thousands at the 13th International Aids Conference, for the politician's handling of an epidemic that will claim millions more lives in South Africa.
President Mbeki left part way through Nkosi's speech. Perhaps he was unable to stomach hearing from a skeletal child a plea for something to be done to save others from the fate he knew, all his life, awaited him.

Heeding the plea would also have meant accepting what the president has publicly questioned - the causal link between HIV and Aids. Mbeki includes among his advisers on Aids a number of so-called "dissidents", including those who believe that Aids does not exist, despite the graveyards rapidly filling with young bodies.

Nkosi Johnson did not go gentle into the night. HIV attacked his brain in December last year, causing seizures and brain damage. Expected to last only days, he fought death for five months. The schoolkid who told, "the worst jokes in the world" according to his mother, was unable to talk; the boy who loved pizza and Coke was fed through a naso-gastric tube; the child whose favourite game was cops and robbers lay immobile in bed wearing nappies. Throughout his life Nkosi has been a symbol of HIV/Aids because he encapsulated the reality, the injustice and the discrimination of the epidemic.

There are two HIV epidemics in South Africa, one for the poor and one for the wealthy. For most of his life his was the human face of the former, the one that means an early death. For most of his 12 years his family could not afford the drugs which would probably have kept him alive through adolescence, and maybe even into adulthood. That, perhaps, gave him more in common with the estimated 4.7m South Africans with HIV.

Only about 10,000 have the money to pay for anti-retroviral drugs. In the last year of his life, Nkosi was able to get therapy after an American woman donated the cost of the treatment. Unfortunately, his body was too weak for the drugs to save him.

At the age of two, Nkosi was left at a care centre for HIV-positive people by his mother, who was terrified of her community's reaction were it to be known that she and her child were infected. One of the directors of the centre was Gail Johnson, a white woman who took Nkosi home and became his de facto foster mother.

In 1997 he made headlines around the world when his primary school was not keen to accept an HIV-positive pupil. They had failed to consider the power of an angry mother - Gail Johnson took the school on in the media and in the courts until Nkosi became a welcomed pupil. He enjoyed school, although if he had remained healthy Nkosi would have had to repeat a year, the result of too little diligence with respect to homework.

Gail and Nkosi Johnson's fight raised awareness of the stigma facing HIV-positive children and led to the implementation of policies to protect them. In the same year, Nkosi's biological mother, Nonthlanthla Nkosi, died. He met his father for the first time at her funeral.

When he stood on the stage in Durban in July last year at the 13th International Aids Conference, Nkosi had two messages.

The first was on behalf of those living with HIV in a country where they are shunned and attacked - and a woman has been stoned to death for publicly admitting she was HIV-positive. "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 said.

The other was to beg that something be done for the estimated 200 babies a day born with HIV. South Africa's government has come under intense local and international criticism for failing to implement preventative programmes that could halve such vertical transmission of the virus. Such children have roughly a 25% chance of dying before their second birthday.

Nkosi was an emblem of struggle, but he also wanted to live. A poignant comment on Nkosi and the realities of Aids in South Africa, came from a friend of his at Nkosi's Haven, a house set up by Gail Johnson in Johannesburg for women and children with the illness: "He used to wish he was a white person because he never saw a white get sick. And he didn't want to be sick."

Nkosi, observed Mbeki's predecessor Nelson Mandela, was bold, indeed he was an "icon of the struggle for life". Maybe Nkosi's power was because he was an "innocent victim" who caught HIV through his mother rather than through sex; perhaps it was because he had no agenda than to live for as long as he could and to help others from suffering similarly; possibly it was because he was black and poor. But Nkosi Johnson's large bony head, frail skeletal body, and thin voice have become as much an emblem of suffering, activism and revolution in the era of Aids in South Africa as the dead body of Hector Petersen, being carried after the massacres in Soweto in 1976, was in the time of apartheid.

• Nkosi Johnson, campaigner, born February 4 1989; died June 1 2001