Acceptance of albinism
The misconceptions about albinism and albinos have decreased over the years.
This is according to Dr Maria Mogane, a paediatrician from Sunward Park Hospital.
“Years back, albino babies would be killed when they were born as people thought they were as a result of witchcraft. And because they have nystagmus, which is an involuntary, rapid and repetitive movement of the eyes, ignorant people were afraid of them,” she says.
September marks Albinism Awareness Month, and the Albinism Society of South Africa (ASSA) will embark on door-to-door campaigns and roadshows to educate and change stereotypes about people living with albinism.
ASSAwishes to reach as many communities as possible, changing myths, mindsets and cultural beliefs that hinder and pose a threat to human kind and the life of people with albinism.
The United Nations Human Rights Council has called on states to take all measures necessary to protect people with albinism, an inherited genetic condition that reduces the amount of melanin pigment formed in the skin, hair and/or eyes.
The Council strongly condemns attacks on people with albinism and urges States to ensure accountability for the perpetrators.
According to the council, NGOs working on albinism have documented 186 ritual attacks against people with albinism since 2000 while abductions and killings were recorded in 15 African States.
The council further goes on to say that in several African countries, it is believed that body parts of persons with albinism possess magical powers capable of bringing riches if used in potions produced by local witchdoctors.
Mogane says that other myths around people living with albinism, is that they don’t die, but disappear, and that they are not normal.
Mogane adds that there isn’t enough being done to inform both the community and people living with albinism about this hereditary skin condition.
“More awareness programmes must be held the Department of Health. When a child is born with albinism, it is an opportunity for healthcare professionals to give information to the family about the condition,” she says.
Mogane adds that healthcare professionals are also not well-informed about the condition, and this is an issue that should be looked into.
Mother of two, Khanyi Mafiri (32) from Dawn Park, is living with albinism.
She says the biggest challenge she faces is that her skin is very sun-sensitive.
“I can’t sit in the sun for too long, otherwise my skin feels like its burning and being poured with boiling water. We have to always wear long sleeved shirts and pants,” she says.
Mafiri says growing up, herself and her husband (who is also living with albinism) were discriminated against as people used to call them ‘white’ and many other derogatory terms.
“People were very concerned that our eyes were not stable and that the color of our eyes was also different from theirs,” she says.
Mafiri says her children, at crèche level, who are also living with albinism do not share the same struggles today with their peers.
Mogane believes that the acceptance of people living with albinism today is improving and that people no longer see them as abnormal.
She, however, blames ignorance on the fact that the condition is not very common.
