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Under the skin of Albinism

For more than 20 years the Albinism Society of South Africa has supported people with albinism. Frances Aron finds out about a condition that’s often surrounded in stigma and superstition.

Sixteen years ago, Xanele Nxumalo* gave birth to a baby who was different: pale skin, pale hair and two pale, gentle eyes peering into her own.

Xanele recalls the shock of seeing her daughter for the first time. “My great grandmother had had albinism,” she says, “but we didn’t understand how it could happen to Lucia*.”

The new mother worried about the response from her community – and soon discovered that her fears were
not unfounded. “People called [my daughter] names,” she says. “I lost all my friends.”

Help finally arrived nine months after Lucia’s birth, when a campaigner from the Albinism Society of South Africa (ASSA) first knocked on the family’s door. Since that day, Xanele has been an enthusiastic volunteer for the organisation, reaching others through door-to-door campaigning, teaching truths and dispelling myths about albinism, and offering support to neighbouring communities.

Nomsanto Mazibuko

Nomsanto Mazibuko

Lucia was born with albinism, an inherited condition characterised by a lack of pigmentation, poor eyesight and sensitivity to sunlight. Without education and support, it can affect a person’s self esteem and, ultimately, their success in society. But Xanele is proud to report that Lucia, now 16, is popular at school.

“All her classmates love her!” the mother says. But the teenage boys who live next door are a constant reminder of the pervasive negative mindset that still exists in today’s society. “It is only the neighbour who says I’m a witch. Otherwise we are accepted in our community,” Xanele says.

Located in Gauteng, ASSA is driven by founder Nomsanto Mazibuko, who herself has albinism. Nomsanto is grateful to have grown up in a tolerant community, in a family with other siblings who have albinism. But when she left school she soon realised that discrimination was rife, and that many individuals who had the condition were suffering in silence.

Nomsanto’s story begins in the 1980s when she, a qualified teacher, became Head of Department of the Foundation Phase in a Gauteng school run by one of her sisters. When the post for deputy principal opened up she was a keen and suitable candidate. It was then that dormant prejudice reared its ugly head: not only was her promotion viewed as nepotistic, but parents also refused to accept someone with albinism in this position. Marching with placards, they denounced the possibility: “What can we expect from this albino person?”… “We don’t want our kids to be oppressed.”

“It is only the neighbour who says I’m a witch. Otherwise we are accepted in our community”

Instead of giving in to her frustration, Nomsanto decided to further her studies and work towards acquiring a Diploma in Project Management at Wits. She focused her project on the plight of South Africans with albinism, and won a USAID-funded trip to an albinism conference in Philadelphia, USA. It was there that she became aware of how frequently the condition occurred not only in African communities, but also in western countries.

ASSA was established in the early 1990s. Liberation was in the air as people began to taste the first sweetness of political freedom. With growing support from women at her church and the invaluable help of her mother, Nomsanto started spreading the word about ASSA.

The organisation garnered attention and was featured in several newspapers. With the growing number of volunteers, an increasing number of workshops could be held, helping people with albinism to develop their self-esteem. Families received counselling and myths about the condition were continually dispelled.

In 2005, the SA Lotto provided a windfall that assisted in the continued operation of the initiative. But as Nomsanto puts it, “what has really kept us going is that children with albinism are born every day.”

In 2010, Nomsanto retired from formal work and dedicated herself solely to running the organisation. She recalls how it was around this time that ASSA first received funding from Gauteng’s Department of Social Development.

Gradually, more and more funding flowed in from a range of local and international sources. Nomsanto recalls the cherry on top: in 2013, the UN Human Rights Council named June 13 International Albinism Awareness Day. They also declared albinism a disability, taking note of the fact that it causes poor eyesight or even blindness. This declaration was made at a critical time, as growing reports of horrific violence towards people with albinism emerged from Tanzania.

In South Africa, reported prejudice is extremely low in comparison to other African countries. Nomsanto cites the only ever proven case of violence against a person with albinism in this country: 20-year-old Thandazile went missing in August 2015. Two men have since been convicted of her abduction and killing, while the alleged witchdoctor disappeared.

Given widespread superstitious beliefs spread by witchdoctors, it’s hardly surprising that many Africans with albinism flee into hiding, fearing for their lives. This is why Nomsanto and her volunteers work so hard to alter attitudes and provide ongoing support networks.

ASSA strongly advocates that every school-going child throughout South Africa should wear a hat and sunscreen. This would be a simple way to help combat early prejudice against fellow learners with albinism, whose pale skins are particularly sensitive to sunlight.

Nomsanto also believes that antenatal clinics should educate parents on the possibility of their child being born with albinism. The genes behind albinism are typically recessive, which means that a baby must receive two copies of the gene – one from each parent – to be born with the condition. If they receive just one copy they won’t have albinism, but could still pass that gene on to their children. Because parents aren’t informed about this mechanism, they cannot understand why their infant is suddenly born with albinism when neither of them has the condition.
But the journey continues and Nomsanto is optimistic. “The fact that we have been given a day set out for just persons with albinism is an achievement,” she says. “We have been able to empower young persons throughout the country and our work is visible.”

* Names have been changed

Myths about albinism

Myth: Albinism is the result of inbreeding, incest or the mixture of two races.
This is, of course, completely untrue. Albinism is caused by a mutation in one of several genes, which are typically recessive. If the parents each carry a single copy of the gene they won’t have albinism, but there’s a one-in-four chance that their child will inherit both copies and be born with the condition.

Myth: Albinism is a curse from God or the ancestral spirits.
Many people believe that albinism is a punishment and could therefore even be contagious. Coupled with a lack of education, these are some of the principal reasons that albinism is so heavily persecuted. A lack of knowledge allows myth and superstition to take precedence over medical and scientific facts, even in the minds of people with albinism.

Myth: Body parts of someone with albinism can make potent good-luck charms.
Once again, a lack of education and the spreading of misinformation by witchdoctors has led to this misconception. This would account for the surge in killings and the desecration of graves of those with albinism in east Africa of late.

WHAT CAN YOU DO?
ASSA membership isn’t limited to people with albinism. Visit www.albinism.org.za/membership to donate and/or volunteer.