PEOPLE with albinism in the province met at the Thobi Kula Indoor Sports Centre to voice their grievances to social development MEC Nancy Sihlwayi last week.
Albinism Society South Africa (Assa) founder Nomasonto Mazibuko said certain myths had a profound effect on their lives. “People have many beliefs about us. We ask our ministers to make people aware that we also die and are buried, we don’t just disappear. We are saddened by the killing of people for African medicines. We interact with the chiefs, traditional leaders and healers to reason together and tell people the truth. Some people cut our hair and our graves are dug up because people believe there is luck in our body parts.”
She said many people across the country still needed to be educated about albinism. “This summit has been long overdue. We are not coming here just for a talk show, but to come up with a plan of action. The people in the health sector must be trained to care for us. The nurses also need to make mothers aware of how important it is to bond with children who are born with this condition. The department of education must teach children how to treat those with albinism. We do not want to go to special schools, we want to be included in schools in our communities from a young age. Special schools are far from home and some kids miss the chance to bond with their families. We have taken 10 people to each district to tell people.”
Benny Masamazi, 40 shared a personal story. “Growing up was painful. I was not welcomed in my family and community. My brother and sister also have albinism and my mother was called names in the village. People said she had been cursed by God. When I went to the Xhosa circumcision school some of the initiates did not want to be around me. At church they did not want me to be a leader, people said they would not be led by a monkey. Through these social development programmes, people are starting to be enlightened and to learn about our condition,” he said.
“Some people ask us for lotto numbers. I am human like everyone else. I visit different community radio stations in the province to inform people about albinism and the government must really educate people about albinism, especially in the rural areas.”
Abenguni chief Dr Langaliyakhanya Mlanjeni said people in rural communities were still trapped in certain beliefs that made them view albinism negatively. “As people who are created like others, they should be accepted and not be called names. God created us all differently. There are reasons why they are like this, it is not a curse from God. If people want blessings they should ask God and not believe in taking the body parts of people with albinism.”
MEC Sihlwayi said they were committed to assisting people with albinism prosper. “We realised there are certain things they are in dire need of and their grievances have not been heard. They have stated their problems and we have agreed to set up a provincial structure that will help them meet and discuss their challenges. They have mentioned the challenges of not having access to sunscreens in hospitals and clinics. We had R31 million set aside for disability this financial year and we want them to manufacture their own sunscreen exactly how they want it.”