LIFESTYLE

There Is Nothing Strange, Infectious Or Supernatural About Us, Say South Africans Living With The Condition

"Some people don't even want to sit next to us thinking we carry some sort of infectious disease."

20/09/2017 09:31 SAST | Updated 20/09/2017 14:43 SAST
Carlo Allegri / Reuters
Mwigulu Magesaa (L) (14), Baraka Lusambo, (C) (7) and Pendo Noni (R) (16) wait in the lobby during prosthetic arm fittings at the Shriners Hospital in Philadelphia, Pennsylvania, U.S., May 30, 2017. All three are Tanzanians with albinism who had body parts chopped off in witchcraft-driven attacks.

"They call us derogatory names. They say we and our mothers are cursed. We are spat on. Some people don't even want to sit next us, thinking we carry some sort of infectious disease. We are hunted because some people think we have magic powers." This is according to Nomasonto Mazibuko, executive director of The Albinism Society of South Africa.

She was speaking to HuffPost SA in light of Albinism Month this September.

What is albinism?
Albinism is a genetic disorder characterised by the complete or partial lack of the pigment melanin. This results in paler skin, hair and eyes and causes vision impairment. The risk of sunburn and skin cancer is also higher among people living with albinism.

Both parents must carry the gene for it to be passed down to their children, even if they themselves do not live with the disorder. "Mothers are often solely blamed for giving birth to children with albinism, but you can't blame anyone for a gene both parents carry," said Mazibuko.

She pointed out that a person with albinism can therefore give birth to a regularly pigmented child if his or her partner is not a carrier of the gene that results in albinism.

What albinism is not

1. Albinism is not unique to Africa
But this continent has a higher prevalence of people living with the disorder, compared with other parts of the world.

According to the World Health Organisation, one in 5,000 to 15,000 people in sub-Saharan Africa live with albinism. While in Europe and North America, one in 20,000 people have the condition, according to nongovernmental organisation Under the Same Sun.

2. It is not contagious
It is a genetic condition where both parents must have the gene. One cannot catch it in the air or by sitting next to a person with albinism, or by kissing that person.

3. It is not a curse
It is society's way of trying to understand something that is different, said Mazibuko. "It is not a curse. No traditional healer or religious person has ever given evidence that albinism is a curse. It's, again, a matter of the genes."

4. There is no magic or superpowers in people living with the condition
"We are like everyone else, only with a complete or partial lack of melanin. There is nothing magical about us," pointed out Mazibuko. She expressed discontent with myths perpetuated about people living with the condition -- to the point of abducting and killing them for body parts. This is a myth particularly spread by witchdoctors who promise riches for body parts of people living with the condition.

Read: Consuming Body Parts And Sleeping With Corpses For Good Luck? Hayibo!

5. Albinism does not equate to blindness
However, because of the lack of melanin, people with albinism suffer from varying degrees of vision loss and this is why they often need the aid of spectacles. "Some of us can drive just fine," pointed out Mazibuko.

"There are also instances where some of us have lazy eyes, cross-eyes or involuntary movement of the eyes because of the condition," explained Mazibuko.

Areas of concern
"There are still a lot of difficulties we face, especially socially. Government only recently started helping us raise awareness and educate people," said Mazibuko.

She pointed out education and employment are some of the main challenges they face. "Teachers need to be patient with children living with the condition. They are as intelligent, but may need more time because sometimes they can't see clearly and therefore can't read or write as fast."

Accessing healthcare is another challenge, pointed out Mandla Gininda. He is the founder of Kwatsaduza Albinism Society Initiative, in the east of Johannesburg. "You find some nurses looking at you strangely, or just doing the very basics instead of checking important areas such as the skin and the eyes.

"We also need more doctors who deal with human genetics," he told HuffPost SA.

Mazibuko called on employers to change their attitudes towards people living with albinism. "We tell our children to get an education and they do, but after varsity, when they look for jobs, they are discriminated against because of their pigmentation."

She further condemned parents who still "hide" their children because they are born with albinism. She believes this perpetuates the stereotype that something is "strange or wrong" with people living with albinism.

Something Gininda attests to. "When they hide you, when someone greets you in the street, you do not know whether to greet back or run back home.

"Parents should instead be the number-one confidence-builders in their children because it all starts at home. If they have enough confidence, they can take on the world," said Mazibuko.

Both Mazibuko and Gininda believe that more education is necessary, especially in remote areas of the country. "From life orientation to biology class, children must be taught about albinism and that it's different, but normal," said Gininda.

Some strides have been made
Both Mazibuko and Gininda commended the level of awareness that exists in the country, compared with 20 years ago.

"You see models and musicians with albinism showing that we are normal and talented and we need to see more of this," said Mazibuko.

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International music sensation Rihanna also made headlines recently when she launched a make-up line, Fenty Beauty, which also matches the skin of women living with albinism.

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