‘Show me a child who doesn’t want to fit in’
Dedicated UWC Master’s student is going places on albinism ‘normalisation’ policy quest
SEPTEMBER is Albinism Awareness Month – a chance for the wider community to become better informed about the needs and challenges of the hundreds of thousands of people living with albinism. Albinism is an inherited genetic condition that reduces the amount of melanin (pigment) formed in the skin, hair and/or eyes.
There are different types of albinism, and the amount of pigment in the eyes varies from one person to the next.
People living with this condition don’t enjoy any special privileges – anywhere in the world – and the global albino community often suffers personal ridicule and discrimination.
But there are many who are working hard to change this.
And it is comforting to know that here in Cape Town, someone living with albinism is herself quietly conducting essential research to help secure the human rights of all those affected.
Hape Peshoane, 30, from Lesotho, a Master’s student in the Department of Women and Gender Studies at the University of the Western Cape (UWC), intends to raise awareness about the life experiences of albinos – and particularly the experiences of albino women in heterosexual relationships.
Even the term “albino” versus “person with albinism” remains a hot topic in the albinism community, Hape says.
There are some who don’t want to be labelled by a word that has such potential to cause pain and find it dehumanising to be defined by a condition which is beyond their control.
Others have made peace with the word and don’t mind when others refer to them as “albinos”. “Personally, I don’t have a problem with it,” she says, “but I understand those who do.”
Hape left for France at the beginning of the month to collect data and to strengthen her research.
With this step – continuing her education post-matric, first at the University of the Free State and currently at UWC, and leaving her home country – she is already disproving many assumptions around people living with albinism.
According to her studies, the latter often resign themselves to living their lives as disabled people, steering away from normal social interaction for fear of being stared at, or for the sake of not making others feel uncomfortable. Hape shares some of the challenges faced by people with albinism:
“Having no skin pigment is a great challenge and a great expense,” she explains. “You can’t use a sunblock with an SPF lower than 50; it won’t have much effect. Also, not all people living with albinism realise the danger of not applying a good sunblock, because there simply weren’t enough awareness campaigns around it – and to us skin cancer is a cruel reality.” Growing up was just as difficult. “Show me a child who doesn’t want to fit in and enjoy playing outside in the sun?” she says. “Not to mention being forced to wear sunblock and sun hats every day, which made you feel less normal than the other kids.
“At primary school I would get into fights for being bullied for the way I look,” she adds. “But we had a fantastic support system at home, and there were members of the community, particularly our neighbours, who would speak up for us as a family living with albinism.”
There are further challenges, as albinos are generally colour-blind and often have poor eyesight. “Our spectacles need to be tinted because the absence of melanin means abnormal development of the retina since it becomes more sensitive to light – the tint assists with reducing the amount of light entering the eyes,” she says.
“And operating a cellphone is also a challenge: the text is simply too small, even if it is set at the biggest font.”
Her four siblings have all inherited the same condition. Each has bad eyesight, but she’s the worst off because of a childhood accident when she ran into some wire.
“My brother and father are able to drive and are married to normally-sighted partners who can help them in challenging driving conditions like reading overhead road signs indicating turn-offs.
Then there’s never feeling entirely safe because of superstitions, misunderstandings and traditional beliefs. “The body parts of people living with albinism are often used in muti,” Hape said.
And then there are those unfounded beliefs that albinos are good-luck charms.
“People may befriend you, but you realise very late the friendship was not genuine. You only notice or become aware when you enter a relationship that they believe you will attract good luck or money in their lives.
“Otherwise there is no other way of telling unless you enter in one, thus making us vulnerable.”
Although already 30 years old, she secretly hopes to be able to drive one day.
“I would have even greater difficulty driving in the years to come, because my partner is visually impaired and he won’t be able to help me read road signs from a distance as my brother and father do,” she says.
“But that is not going to stop me from achieving that; eventually I will come up with techniques to help me cope.”
Her vision issues affected her early on – at primary school already. “I had to repeat Grade 5, simply because I couldn’t see properly.
“And this type of thing can demoralise people with albinism – they often think they’re not smart enough to make it.”
She feels strongly about the potential of her research – there are so many unanswered questions.
“Why is it that I’m not treated the same way as females with melanin by the opposite sex?” she asks. “It’s an interesting question – my next thesis will tackle that.”
She’s happy to be involved in the formation of policy affecting people living with albinism.
“I feel I have a constructive and relevant part to play,” says Hape, “and I am excited about what the future holds for people living with albinism.”