Battling Albinism's enduring stigma

A young SA woman who refuses to let Albinism define her, calls for help to battle hurtful misconceptions.

Siphosethu Mbuli. Picture: Aletta Harrison/EWN

CAPE TOWN - "On a day-to-day basis, it's the small things that people wouldn't recognise or wouldn't really take into account," Siphosethu Mbuli explains.

You'd be forgiven for expecting a bigger complaint from a "black woman in a white skin" - as she describes herself. The soft-spoken 22-year-old has never known what it is not to stick out. To be "hyper-visible" - as she calls it - is an inescapable everyday reality for her.

But ironically, she explains, that is not the main challenge Albinism presents for her. In actual fact her sight problem, the last thing people would notice, is what affects her most every day. It's also one of the least considered problems experienced by those born without melanin.

Hailing from a small village just outside King William's Town in the Eastern Cape, Mbuli was born to a family wholly unequipped to care for a baby with Albinism and a rural community typically ignorant about the condition.

Superstitions and preconceptions about Albinism are rife in South Africa and Mbuli was quickly ostracised. Despite maturing into a remarkably self-assured woman, the painful memories manifest as a pink blush on her ivory skin.

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"Kids wouldn't want to play with me. Some women in my village, when they were pregnant, they wouldn't want me to play with their kids or to be in the same room as them during their pregnancy. Apparently it was bad luck for them to meet someone who has Albinism, because that means their child will have Albinism as well."

She says children started teasing her and calling her names.

"It really was difficult. And you know, besides the difficulty of the discrimination I received from my peers and other kids growing up, I received it from older people as well who would say certain things about me or my family, which I really didn't understand," she recalls.

Besides the social pressures, there were very practical challenges in the form of high medical expenses. Mbuli remembers her grandmother having to find an extra R1,000 a month to pay for specialists and extras like sunscreen with no outside help.

"There hasn't been any official support that I recall ever receiving from government or the state or anything. I grew up with my grandmother, my parents passed away young, and she was on a pension grant and she had to take me to an eye specialist and to a dermatologist. All these things that cost a lot of money, and she knew nothing about the condition and she didn't have any information about it.

"It was a learning process… painful mistakes could have been avoided if more resources and information was available."

Mbuli says although we know a lot more about Albinism in 2016, the regularity with which she encounters misconceptions is a great cause of frustration. From the archaic belief that those with Albinism have magical powers to the mistaken belief that it is a separate race.

"I've had a lot of people in the past identifying my race as being 'Albino' which I find wrong on so many levels. And it's things like that that I really don't appreciate and also being called 'Albino' is not something that I accept or like. I'd rather have you say I'm a person living with Albinism - it's a condition I have it, it's not who I am.

Mbuli says the misinformation which persist is only partly due to a lack of information or assistance from governments on the continent. She says people with Albinism themselves need to speak up to help dispel common misconceptions.

According to the Albinism Society of South Africa (ASSA), not all people with the condition qualify for financial assistance from the state.

ASSA estimates there are around 35,000 people living with Albinism in South Africa and that according to the latest research, which is over a decade old, it affects ¼,000 black South Africans.

The organisation's Nompumelelo Mazibuko says although there is some support from government, more needs to be done.

"There still a need to have policy amended to accommodate issues of discrimination [and of] Albinism as a disability," she told Eyewitness News via email.

The problem is also that different individuals require varying degrees of support, as sight problems range from slight to extreme. This means more consideration towards children with Albinism in schools, affordable eye care. Sunscreen should also be listed on the essential drug list, since children with Albinism are at severe risk of skin cancer.

Having completed a BSc Chemistry degree at the University of Cape Town, Mbuli is now pursuing a career in radio broadcasting. But it's no coincidence that she has ended up in the public domain. Instead of hiding from the world, she says she made the decision to face it head-on. She hopes that through talking about Albinism she can help raise awareness to combat stigma and boost support for the next generation of people with the condition.

"Vulnerability is not an easy thing, because talking about a condition that you live with every day is not an easy thing to do, but it really is important that people with Albinism themselves start being part of the conversation.

"But also, government needs to meet us halfway by providing resources for people to find more information about Albinism, especially in South Africa."

Mbuli has overcome a barrage of challenges to find her feet and embrace her identity. But even though Stellenbosch is a long way from King William's Town, she is at times frustrated when the same misconceptions and ideas keep on cropping up.

However, she refuses to be defined by other people's ideas about her.

"And that's the main thing, I'm Siphosethu Mbuli - I have interests and hobbies and friends, I do things, and down the line you can mention that I have this condition. So it's not a defining factor, it's something that I have. The defining characteristic of who I am can't be a condition."