Stopping the stigma around albinism

A rare genetic condition where the body produces little or no melanin, the pigment that colours skin, hair and eyes, albinism is a lifelong condition that affects one’s colouring, skin sensitivity, eyesight and vulnerability to skin cancer. It can affect anyone regardless of their gender or ethnicity but is most prevalent in sub-Saharan Africa, where a lack of education is at times deadly.

Mathiba’s story

While she’s no stranger to the challenges that those with albinism face, Mathiba embraces the condition and through #ProudAlbinism empowers others to do the same. She says her healthy self-image comes from her mother who fought to ensure she could attend a mainstream school and always encouraged her to pursue her dreams. Even though her mother and father do not have albinism, they both have relatives with the condition. “Both parents must have the gene to produce a child with albinism,” she explains.

“My mom always instilled confidence in me,” Mathiba recalls. “She didn’t want to take me to a special needs school. She therefore had to fight for me to be accommodated at a mainstream school because the teachers there did not want to go an extra mile to provide me with reasonable accommodation.” Many children with albinism do go to special needs schools because they generally have visual impairments and face discrimination from both pupils and teachers.

“When it comes to being in class, we sometimes struggle with certain types of handwriting, and certain colours of chalk,” Mathiba explains. “Our eyes are also affected by light and if the classroom is very bright, you cannot see the chalkboard, so we sometimes need dimmer classrooms.” Due to her mother’s determination, Mathiba successfully completed her mainstream schooling, largely supported by teachers who understood her condition and helped to accommodate it. “There’s a reason for special needs schools but any parent has a right to take their children where they feel that they will be comfortable,” she says.

“We are only human and there’s nothing magical about us, we are who we are.”

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Ignorance & misconceptions

Mathiba is grateful for her education, but she encountered ignorance and battled misconceptions along the way. “In high school, I was asked if it’s true that we don’t die, that we go to a mountain and disappear,” she says. The remark was particularly upsetting as she had lost her niece who had albinism and died the age of one and a half because she was neglected at a hospital. “I’ll never forget that her coffin was white and she was wearing a red beanie,” she says.

“But people said to me, ‘we’ve never seen the grave of a person with albinism’. A gravestone will never say there’s a person with albinism lying here, a gravestone does not state whether a person had a disability. I find our African people so ignorant because that’s where myths mainly come from. We are only human and there’s nothing magical about us, we are who we are.”

These dangerous myths have also led to some people with albinism being cast out by their parents and communities and even killed or dismembered for their body parts for use in muti. This persecution has been promulgated and exploited by witch doctors and others who use such body parts as ingredients in rituals, concoctions and potions with the claim that their magic will bring prosperity to the user.

Mathiba personally felt the sting of stigma when she entered a beauty pageant in her hometown of Atteridgeville in 2010. Yet armed with her unshakeable self-belief, she ultimately took home the crown. “People were shocked that a person like me could want to enter a pageant and they questioned my confidence and whether I really was considering joining the pageant,” she recalls. “I asked, why not? I’m beautiful just like those other girls on the stage.” The only contestant with albinism, Mathiba simply enjoyed herself. “I had fun on stage and people were rooting for me. Little did I know that I was going to win.”

Mathiba wrote and produced a fashion film called A Daughter of Destiny which highlights women and children with albinism.

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Educating through fashion, film and workshops

In her work with fashion and filmmaking, Mathiba wrote and produced a fashion film called A Daughter of Destiny which highlights women and children with albinism. “Many people with albinism have never been in front of a professional camera,” she says. “So, #ProudAlbinism gave them that experience through my film.”

While Mathiba says that while it can sometimes be difficult to get photographers to volunteer for the fashion shoots she plans as part of her initiative, there are some who believe in it, as well as fashion designers who lend them clothes. “On a photo shoot we did for 2021 International Albinism Awareness Day, we didn’t use a fashion designer or a makeup artist – we were just bare faced, we didn’t have any makeup at all, we were wearing just nude tights and nude bras.” The photo shoot was later chosen to be featured in Italian Vogue, a source for great pride for Mathiba.

Through #ProudAlbinism, Mathiba has also done sensitisation sessions at two schools in Gauteng where there are a small number of kids with albinism. “There’s still a lot to teach, educating teachers how to reasonably accommodate a child with albinism, and teaching the little ones that you can play with this child while encouraging them to help the child put on sunscreen and wear a hat. This child is a human with the same psychology as everyone, he or she just doesn’t have pigment.”

Mathiba is thrilled at the positive impact that these talks have had, with some kids subsequently volunteering to help their friend with albinism to put on sunscreen and a grade one child with albinism now passing with great marks as his eyesight is being accommodated. While Mathiba’s nephew has albinism, her daughter does not, which was in fact initially a source of disappointment for her, she says. “Albinism is beautiful. I just love myself the way that I am. I wouldn’t want to be anything or anyone else.”

“Albinism is beautiful. I just love myself the way that I am. I wouldn’t want to be anything or anyone else.”

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