Special needs: Albinism
Being born with albinism can be the difference between life and death, writes Margot Bertelsmann
LOOKING DIFFERENT can be difficult. Having to “wear” a part of your story on your body, baring a part of yourself to any observer, is a burden that many people living with a disability or people with a visible difference must carry.
But for most visibly different people worldwide, it remains at the level of an annoyance, something they must learn to cope with in their normal daily activities. Unless, of course, you are a person with albinism, living in one of 28 African countries where people like you are regular targets of mutilation and murder, that is. Then, your difference is suddenly a matter of life and death.
People with albinism have a variant in their melanin-producing genes, which means that their skin, eyes and hair lacks pigment and is very light. That’s all it is! A small genetic deviation, causing a small difference in colouring. But it is also everything.
According to United Nations estimates, 80 people with albinism have been murdered in Tanzania alone since 2000. The condition is commonest in that country, with one in 1 400 people affected. In other parts of Africa the figure is closer to one in 5 000 to one in 15 000 people.
Other culprits for persecuting people with albinism are DRC, Burundi, Malawi, as well as – to our shame – South Africa.
People with albinism are murdered due to persistent cultural beliefs that their body parts have extraordinary powers when used in traditional medicine.
BREAKING THE MYTHS
Myths about albinism abound: that they are the result of racial mixing; or that they disappear instead of leaving a corpse when they die.
Western culture is by no means exempt: the “evil albino” character is a lazy shortcut that has been used in films instead of proper characterisation for decades.
Movies such as The Da Vinci Code, The Matrix Reloaded and Cold Mountain (in which the character’s albinism is blamed on “inbreeding” – a complete untruth) also do not help.
For any parent with a child with albinism, this is deeply worrying.
Albinism activist Mpho Tjope runs the Albinism Advocacy for Africa NGO, which focuses on educational advocacy, teaching teachers at schools and communities about behaviours that exclude people with albinism.
Mpho says living with albinism can leave psychological marks from being
teased, abused, or excluded.
“People say we are reserved and that we isolate ourselves. They don’t understand that at times it can be hard to be ourselves.
“Doing basic things like walking can be a challenge. One could be walking, and a person would scream because they are afraid of you. Some spit and tell us we don’t belong to the black community while others refer to us as izinkawu,” relates Mpho.
He says it is about time the abuse stopped.
“Albinism is a manageable condition, but we need access to education, health and jobs so that we can contribute to the economy and not be ostracised.”
All cultures in the world can and must change when humanity’s more recent discoveries add to a pool of knowledge that disproves even some long-held traditional beliefs. It is up to all of us to stamp out prejudice and persecution, which have no place in a democratic South Africa.
Evah Maseko, from Mbombela in Mpumalanga, is a mother of four. Her 13-year-old boy Muzi has albinism.
“I am worried too much,” she says, “because there are many people who say my child is lucky, he is a millionaire (and this makes his body parts desirable). It’s not safe. They dig up dead people like him.”
Evah is also worried about abduction. “I tell my child that he must be careful, not to go off with strangers. I don’t like him to play in the street. He must stay at home. Luckily, at school, the security is tight,” she explains.
Evah’s fears are not unfounded. Recently, 14-year-old Gabisile Shabane and her 15-month-old cousin, Nkosikhona Ngwenya, were kidnapped at home in Hlalanikahle, Emalahleni in Mpumalanga. Their bodies were found days later in the field not far from home.
Two traditional healers have since appeared in court in connection with their killing believed to have been for their body parts to make muthi.
Nevertheless, Evah says Muzi is a happy, popular boy.
She says she was not surprised by her child’s appearance when he was born, because she has known people with albinism all her life.
However, she is very grateful to have found sis’gladys Nkosi.
Sis’gladys is famous in the albinism circles. She founded the Mbombela Albinism Support Group in 1998.
“Everybody was scared at that time,” Sis’gladys remembers, and she thought it was time for people with albinism to organise, educate and protect themselves.
Since then, her monthly support group has become a source of strength and community for many families, including Evah and Muzi, who like to attend because of the simple joy of being among people who look like you, and share some of your concerns.
“Every month I go to meet with sis’gladys. She teaches us, and the municipality gives us free sunscreen,” Evah says.
Four-year-old Thandaza, who lives with albinism, is also glad to see people like herself.
“When we are going, she says, ‘Mama,
when will we go to Albinism Awareness again?’” recounts her mother, Christinah Nyathi, also mother to 13-year-old Sifiso, both children are living with albinism.
Christinah says her children have been welcomed at school and never excluded.
Her only worry is what adults might do to them.
“When I see the news on TV about children living with albinism, I worry that maybe next time it will be me,” she says.
Mpho’s advice to parents of children with albinism is to love and protect their children to the best of their abilities.
“Some of us are here not because we had the best conditions, but because we were loved,” he adds. YB