NGOs take on challenges of albinism

A variety of ailments can affect people with albinism, an inherited genetic condition characterised by the absence of melanin in skin, eyes and hair. But the challenges confronting albinos do not end there: all too often, they are also shunned and discriminated against, in Southern Africa and elsewhere.

“Traditionally it’s a taboo or a curse to give birth to an albino. Some people believe that having an albino is the result of bewitchment in a family,” says John Makumbe, professor of political science at the University of Zimbabwe and president of the Zimbabwe Albino Association—an NGO based in the capital, Harare.
He puts the number of people with albinism in his country at about 14 000.

Suspicion about interracial relationships may also come into play. “I was nearly killed at birth. The midwife thought my mother was misbehaving with some white missionaries around our area,” Makumbe says.

“Many times people refer to me as a white person. Initially it was a form of insult; now it has become a joke. Some of my friends say, ‘You white man, have you got a farm? We want to invade it,’” he says, in reference to the farm occupations that began in Zimbabwe in 2000, ostensibly to correct racial imbalances in land ownership that dated back to the colonial era.

But Makumbe is not one to take such comments lying down. “I sometimes refer to my friends as ‘you black boys’ or ‘you niggers’! Everybody laughs. That’s how you fight stigma.” While rare, albinism affects all race groups.

Lorato Moswane, a South African accountant with albinism, chuckles when asked whether people view her as a white person. “I don’t know,” she says in the commercial centre of Johannesburg. “But whenever I walk around places people look at me curiously.”

All of this can make romantic relationships difficult to forge.

“You can fall in love but the sisters, parents and friends may not like it. They will say you are degrading their family. The lady will end up dumping you because she can’t stand the pressure. Others will just disappear without telling you,” says Sanele Mtshazo, an investigator with albinism who works for the National Prosecuting Authority of South Africa.

Ailments

The ailments that typically afflict albinos can compromise their education and job prospects, although some efforts are being made to remedy this.

“About 96% of people with albinism have eye problems. They can either be short- or long-sighted,” says Arnold Christianson, a professor of human genetics at the University of the Witwatersrand in Johannesburg.

Notes Mtshazo: “Short-sightedness … reduces speed in terms of typing and writing. For example, I need more time to type and write than a person without albinism.

“In school I had always to sit in front because of my eyesight, and because of my slow response to reading and writing I never finished exams. In those days, there was no extra time [to compensate for eye problems]. A few universities now allow for extra time … when requested.”

Similarly, every school and university in Zimbabwe must ensure that students with albinism are supplied with examination papers in large print. Learners also have the benefit of special text books written in large print.

But, while ways of dealing with poor vision can be found in the classroom, a test for a driver’s licence offers less room to manoeuvre.

“Even with spectacles most of us can’t pass the eye test for driving, [but] most employers prefer people with a driver’s licence,” observes Mtshazo.

Their lack of melanin means albinos cannot do jobs that entail lengthy exposure to the sun. Melanin “protects the skin [and] the back of the eye, called the retina, from the harmful effects of ultraviolet light. Without melanin, the sun burns the eyes and the skin very easily,” says Christianson.

This puts people with albinism at higher risk of skin cancer.

“You develop blisters when you stand in the sun; always you have to work under shelter,” says Mtshazo. As a result, “You can’t work in construction … because your body doesn’t contain the pigment to protect you against the sun.”

Challenges

Faced with such challenges, various NGOs for people with albinism are conducting a variety of initiatives in a bid to improve matters.

“We visit church leaders, tribal leaders and councillors to appeal to them to help people with albinism with hats, creams and sunglasses,” says Joseph Ndinomupya, president of the Namibia Albinism Association Trust, an NGO that also looks to companies for assistance.

Elsewhere, the Albinism Society of South Africa has designated September Albinism Month.

“We encourage church leaders, social workers and teachers to speak on the condition of albinism,” says Tony Ngwenya, director of the Johannesburg-based organisation. In South Africa, one in every 4 000 persons has albinism.

While a lack of funding prevents the society from conducting programmes in the workplace to educate employers about albinism, there is an outreach to schools at present. “We have a school competition this year. It’s an essay competition on albinism, which closes in July. We encourage students to research and write about albinos.”

In Zimbabwe, says Makumbe, there have been successful efforts to move albino teachers from hot areas to milder parts, where they will be safer from the sun.

“Some ministries have also approached us to employ our people as clerks and office messengers,” he notes. “We tried to get some albinos to work in industry, but we found that some chemicals affect their skin.”

Makumbe’s association receives almost $2 500 a month from Econet Wireless, a Harare-based company. “This goes a long way to paying salaries and meeting the rent of our office,” he says. “But it’s very hard to raise fund for albinos.”

Still, he notes: “In Zimbabwe, discrimination against albinos is gradually fading away. Women are unlikely to kill their children at birth for fear that people would laugh at them.”

Region

The situation elsewhere in the region is less promising, he believes.

“We have worked with albinos in Namibia, but they are not getting the support of the authorities there. In Botswana, we didn’t get anywhere. In Mozambique it was fruitless. Up to now Mozambicans come over to Zimbabwe to collect [skin] lotions to deliver to people with albinism in Mozambique.”

These words are echoed by Ndinomupya. “Our situation is desperate,” he says, estimating that the number of people with albinism in his country is in the region of 1 000.

Statistics suggest that it is in Africa’s interest to develop solutions to the problems faced by people with albinism as rapidly as possible.

“It would appear that people in Africa have a higher prevalence of people born with albinism. The frequency is about one per 4 000 to 5 000 persons,” notes Christianson, adding that in country like Denmark it is one in 60 000.—IPS

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