A different kind of family – overcoming albinism

They have two little girls, Boitshepo (4) and Bohlale (2).

But this is no ordinary family. They are all albinos and live with the stigmatism surrounding albinism.

“It just happened that we fell in love. I didn’t choose her because she’s also living with albinism,” says Selatole.

Khanyi says they understand each other better and are able to remind each other to take care of their skin.

“Our skin is the most sensitive part of our bodies, as we have no skin pigmentation and therefore burn easily when exposed to the sun,” she says.

“We spend about R260 a month on sunscreen for our family and we also have to buy hats for our girls regularly.”

Khanyi was abandoned by her 15-year-old mother at 13 months, because the teen couldn’t stand being ridiculed for having a baby who was different to her peers.

The little girl was raised by her father who used to receive up to six months’ worth of sunscreen for free from a government hospital.

“Social workers used to visit my dad regularly to ensure that he was taking care of me properly, and to give him support,” says Khanyi.

”Today parents who give birth to children with albinism need to be informed how to raise such a child.”

Khanyi suggests that the government set up support groups headed by nurses, and that they also give out free sunscreen to people living with albinism as, without it, they are more prone to getting skin cancer.

“The government should also assist dermatologists to regularly run free tests for skin diseases and allergies, as we have very sensitive skin and easily pick up allergies and other skin problems,” she says.

Selatole adds that people living with albinism are also very sensitive to light and are mostly short or far-sighted.

Both Selatole and Khanyi went to a boarding school for children with special needs, including disability, partial blindness and hearing defects.

“At first I used to ask myself why I was born this way, but after seeing the struggles of other students at school, I saw that I was more fortunate and was consoled that living with albinism was not a disability,” says Selatole.

He adds that teachers in the rural areas were afraid of people living with albinism, and didn’t understand their needs, such as the fact that they had to sit in the front of the class to see the board clearly.

Khanyi says she approached her lecturers in varsity to explain her weaknesses and was given notes prior to classes, as well as an extra 15 minutes during exams.

“I always played the disability card, so I benefited from everything that was for disabled people, such as free bus rides,” she says.

Selatole and Khanyi agree that prejudices against people living with albinism have diminished as the years have progressed.

“People used to think that we simply vanished because there were never funerals held for people living with albinism,” says Khanyi.

“There is a myth that mutilating a person living with albinism, and using their body parts for muthi would make the muthi more powerful,” she adds.

“Families would, therefore, bury their relatives living with albinism at night, to protect them for those wanting to use their bodies for muthi; they also wouldn’t inform the community.”

“In the end, we live a normal life, except for having to deal with the constant stares from people, and questioning about whether we are brother and sister,” says Selatole.

“We are already used to this, so we don’t get offended; I even have a friend who doesn’t want to invite me to her wedding, because she says I’m going to steal all the attention,” jokes Khanyi.

According to their parents, the Mafiri sisters don’t understand anything about albinism and just know that they have to take extra care of their skin.

“I was very nervous for my children, but kids of today are very intelligent,” Khanyi says.

“My daughter says her friend told her that they both look like their mothers.”

She adds that they will not be taking their children to a special school, as they do not see albinism as a disability.