“Living with albinism in a black community has made me realise that I am different and that there’s something wrong with me.”
These are the words of 23-year-old Mohawu Modikoe from Soweto.
Growing up in Dobsonville, Modikoe said even though his parents never treated him differently, they made him spend most of his childhood indoors where he had less interaction with peers his age. That made it harder to make friends as the looks he got from people made him feel like there was something wrong with him.
“I had a beautiful childhood, with parents and siblings who were loving and caring. Most of my primary school days I was indoors. It was in high school where I got out and there were people who were calling me names like “umlungu” (white person) and that made me realise that I was different but I didn’t mind them,” Modikoe said.
He said he had moments when he was rebellious, got involved in fights.
“I was exposed to everyone and anyone and I never went to any special school. I just adapted to my surroundings,” he said.
He said even though he is the only one in his family living with albinism, he was not treated like he was different from them. While he may have struggled to fit in socially, Modikoe said when it came to love and relationships, girls just love him.
“I was a shy person growing up so it wasn’t easy for me to approach girls, so they still approached me first. I was always scared that if I tried they would look at me differently, but that wasn’t the case,” he said.
Modikoe is a DJ, a sound engineer and an event organiser.
He says he does not really feel like he can be a voice for those living with albinism because he does not believe there is anything wrong with them.
“For me, I don’t even look at myself as a person who lives with albinism, I’m the same as other people, the only difference is what everybody can see but I feel like every other person,” Modikoe said.
He said the only thing that irritates him is how parents of kids who are living with the condition do not give their children the exposure to be with other people which leads to name calling because they are hidden from the world.
“It would help a lot if parents learn more about the condition.”
Modikoe loves music, going to the gym and taking care of his relaxed hair.
Physically looking after his skin is quite expensive for him as he has to buy products which have a high sun protection factor, especially during summer.
“I do not go out in the sun, I try to be indoors a lot especially in summer because it is bad for my skin and eyesight,” he said.
He said he would appreciate if people asked about the condition of him instead of calling him names or being weird towards him.
He said he finds it strange that there are people out there who are killing those living with the condition of their body parts.
“There is a lot we should be focusing on than people’s skin colour.”
His friend, Musa Chabalala, says Modikoe is a good person.
“I don’t find anything wrong with him because there is nothing wrong with him,” Chabalala said.
Albinism is an inherited condition where a person is unable to produce normal colouring of the skin, hair and eyes (lack of pigments). The condition can be limited to the eye or involve the eye and the skin.
Modikoe is among thousands of South Africans who are living with the condition and others have come out to embrace who they are. Refilwe Modiselle is one of them, she is a South African model and entertainer born in Rockville, Soweto and the country’s first professional fashion model with albinism.
She says as a model she wants beauty to be appreciated without someone getting over excited because it’s a person with albinism instead of just appreciating the beauty of who it is and not what it is.
“It’s also creating the wrong idea for those with albinism, that to be acknowledged as handsome or beautiful you have to become a model. No no and no. By becoming a model was not the benchmark to say that’s all you have to aspire to do in life and that’s the pinnacle of making it in life.
“God just happened to use me as a vessel for that particular career path to help change conventions of how we’ve been labelled in the context of beauty and also show you that actually, it’s not about just being a model, there’s far more I’ve gone on to do with my life that you may not have heard of,” she said.
Albinism Society of South Africa is an organisation Nomasonto Mazibuko established to enhance the self- esteem of people with albinism, enable and support parents to care properly for children with albinism and create socially acceptable conditions for people with albinism.
It runs a number of projects and programmes as well as workshops and seminars. The other aim of the society is collecting and disseminating information on albinism to the community.