Cuthbert Ramatlo was 11 years old when he was pulled aside by the boys in the neighbourhood. They cut him with a razor on his arm to see if he had blood like other human beings.
Ramatlo, now 36, is an albinism activist and an editor at the Wits Disability Unit.
September is albinism awareness month when the department of health educates the public on what the condition is about.
Ramatlo says it is a month where people with albinism should open up and make people aware of the condition.
There are many mistaken beliefs about albinism in South Africa and elsewhere. Ramatlo‘s relatives believed his mother was cursed by having two children, (himself and his brother), with albinism.
But the truth is albinism is a condition caused by lack of melanin pigmentation which affects eye sight.
“One in 30 Southern African black people is a carrier of albinism,” says genetic councillor Merlyn Glass.
People with albinism are often called derogatory names such as ‘leswafi’, ‘inkawu’ and ‘daywalker’. Ramatlo said ‘inkawu’ is a white monkey and “it’s disturbing that people with albinism are symbolised with a monkey”.
However, he says he doesn’t mind being called ‘leswafi’ as it’s just a Sesotho name for albinism.
Sifiso Mbhele, an industrial psychology graduate, says his peers at school called him ‘leswafi’ but “I developed a thick skin at an early age and didn’t take it to heart”.
There is also a myth that people with albinism don’t die but disappear. Mbhele says they are as human as the next person and obviously die as well.
Ramatlo explains there is a “justifiable background” to this myth. In the past, people with albinism would farm without protection from the sun like everyone else.
The sun burnt them until they developed skin cancer and their skin peeled off.
Family members would then hide the person with albinism in the hut until they died.
That corpse wouldn’t be viewed because the skin looked so bad. Community members would then assume the person with albinism had disappeared.
Mbhele says albinism is part and parcel of who he is: “It obviously comes with minor adjustments in my lifestyle like protecting myself from the sun, taking extra caution not to worsen my not-so-good vision and the biggest perk with that is that I get to be chauffeured around for the rest of my life.”
Ramatlo says people with albinism are capable of doing anything anyone else does – the only difference is skin colour.