Though defined as disabled, the state does not accord a albinos any rights and South Africans "are as deaf as the ground", activists say.
‘South Africans are as deaf as the ground,” said Nomasonto Grace Mazibuko, the executive director of the Albinism Society of Southern Africa. “Even our government refuses to recognise us.”
One in 4 000 people in the country is affected by albinism. This inherited condition is explained as a lack of pigment, which affects the eyes, hair and skin. People living with albinism are particularly vulnerable to skin cancer and a range of eye problems that can lead to blindness.
In response to the widespread disappearances and killing of people with albinism in Tanzania, Burundi and other East and Central African countries, the United Nations officially declared albinos “persons with disabilities” in 2008.
Though South Africa signed the UN Convention on the Rights of Persons with Disabilities in 2007, Mazibuko said no recognition had been given to people living with albinism or their rights. She said public hospitals had an obligation to provide sunscreen lotion to all people affected by albinism.
But Simon Zwane, the spokesperson for the Gauteng health department, told the Mail & Guardian he was “not aware of any such programme”.
A minority under threat
A spokesperson for Chris Hani Baragwanath Hospital, Nkosiyethu Mazibuko, said: “I believe something like that [programme] is still to be rolled out, but I am not familiar with the details and I cannot confirm it.”
In Tanzania, over the past few years more than 50 people with albinism were murdered for their body parts before the government officially recognised them as a minority under threat. In South Africa, the albinism society believes it is just a matter of time before the same thing happens here.
“It is already here. I am not looking forward to the day when our government will say that 50 people with albinism have disappeared,” Nomasonto Mazibuko said.
Her concern is shared by Nthabiseng Matjie (15), a confident high-school student who loves maths and wants to be a surgeon. She said she feared for her life after she heard the news of the killing of people with albinism in Tanzania.
“I was afraid that somebody would come and get me and cut me up to pieces. I didn’t feel safe,” she said.
In May 2011, Matjie’s nightmare became a reality, with the widely reported disappearance of Sibusiso Nhatave, a 14-year-old South African boy with albinism. Nhatave was abducted outside his school in KwaZulu-Natal. The community believes his kidnapping is connected to witchcraft, but no evidence has been found. Nhatave is still missing.
Mazibuko said people with albinism were vulnerable to prejudice at many other levels. “When we get into taxis, people still move to the other side, or even refuse to use that taxi. We are still called isishawa [a Zulu word for a person who is cursed] and inkawu [an Nguni word for ‘white baboon’].”
She said that, when people with albinism applied for jobs, “we can see on the faces of the people on the panel that no way are we going to be selected. This needs to end. We should not have to feel caged in our own country.”
Matjie’s cousin, Clyde Meela, said that, in African culture, people preferred to avoid the topic of albinism. “I have never really thought about what she [Matjie] goes through every day. I love and support her, but in our culture we don’t talk about things like this,” Meela said.
“What gives us the right to ostracise people with albinism? It is us who need to change our attitude.”
Matjie wondered how much longer she would have to contend with pre-judice. “Let me be honest,” she said. “I don’t want to be an albino. I want to be black. I want to be free and normal. I want to play in the sun like other kids. I want to go to a school where people are like me, where people will understand me. I am tired of thinking about the next time that someone will judge me and give me that look.”
Mazibuko said she knew the struggle was just beginning.
“The best thing for us to do is unite and get educated,” she said. “I am waiting for the government to come knocking on our door.”