Activists fighting against albinism myths live life of fear

2016-07-13 10:42
Nosipho Madlala (24), a Pietermaritzburg resident, says albinism affects the sufferer’s skin and eyesight, and their ability to work.

Nosipho Madlala (24), a Pietermaritzburg resident, says albinism affects the sufferer’s skin and eyesight, and their ability to work. (Supplied )

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Pietermaritzburg - “People with albinism are hunted,” said Nomasonto Mazibuko, the executive director of the Albinism Society of South Africa (Assa).

This was in response to the arrest of a 28-year-old woman who attempted to sell a child with albinism to a traditional healer in Manguzi (Northern KwaZulu- Natal) for R100 000. “It is very upsetting to think that something like that can happen,” she said. “I do not understand why at any stage anyone would give away a precious child for money.”

This incident is not the first of its kind in Manguzi. Last year, people living with albinism in the area called for protection after a 20-year-old woman was brutally murdered in a “muthi killing”. These murders are committed for the purposes of creating traditional medicines.

Nosipho Madlala (24), a Pietermaritzburg resident living with albinism, says she no longer feels safe. “I can’t go to certain places because of these things. Even in my community I sometimes don’t feel safe.”

Mazibuko also feels that her position as a mouthpiece for the local albinism community puts her at risk.

“I also don’t feel safe. As a person who advocates for the rights of people with albinism then I could also be targeted.”

There are a number of dangerous myths surrounding albinism.

“Some believe that people with albinism do not die but disappear. Can you imagine, the woman who was selling the child might have believed this,” said Mazibuko. “They say, if you have albinism, it is useless getting insurance or to join a stokvel because you will disappear anyway,” said Mazibuko.

Madlala shared some of the struggles she faces as a person living with albinism. “I have very poor eyesight, which is a daily struggle and some people don’t understand. You need to explain it to people. It can be a career limitation because it’s difficult to see things at work.

“Some people don’t know what [albinism] is. People don’t know how to act around me, they act very awkwardly. They sometimes don’t know which language to use when addressing me because I look ‘white’ but I’m black, so they won’t know whether to use English or Zulu.”

In South Africa, albinism is categorised as a disability. Mazibuko said that the condition’s effects on the skin and eyesight limit the sufferer’s abilities.

“Albinism affects the eyes, hair and skin. It is a disability because of the eyesight [the degree of impairment] and the skin sensitivity,” she said.

“For example, someone with albinism can’t necessarily work in the field.”

Both Madlala and Mazibuko feel that there is vast ignorance about albinism and people need to be educated.

“People should be considerate. There’s nothing really different about us. People should feel free to ask us questions,” said Madlala.

“We need to educate people that albinism is genetic. People from different cultural backgrounds and in the field of medicine should be taught that albinism can happen to anyone.

“People also think that if the child has albinism, it is the woman’s fault, but both parents can carry the albinism gene. It’s not the woman’s fault,” said Mazibuko.

Read more on:    pietermaritzburg  |  albinism

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