Albinism Awareness Month: UWC researcher Hape Peshoane sheds some light on living with albinism
Albinism is an inherited genetic condition that reduces the amount of melanin pigment formed in the skin, hair and or eyes. People living with this condition often face ridicule and discrimination - and a lack of understanding.??
But many people with albinism are making significant contributions to research and academia - like University of the Western Cape (UWC) Master’s student Hape Peshoane, who is quietly conducting essential research to help secure the rights of those living with albinism…and also living with albinism herself.
Hape, who is completing her studies in the Department of Women and Gender Studies in UWC’s Faculty of Arts, intends to raise awareness about the life experiences of albinos - and particularly the experiences of albino women in heterosexual relationships.
With September being 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 - here’s what you might want to know.
Living With Albinism in the Twenty-First Century
There are different types of albinism, and the amount of pigment in the eyes varies from one person to the next. And even the term “albino” vs. “person with albinism” remains a hot topic in the albinism community, Hape says.
There are some who feel that they don’t want to be labeled by a word that has such potential to cause pain, or who feel objectified by the condition and find it to be dehumanizing. Others have made peace with the word and don’t mind when others refer to them as “albino.
“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 this month to collect data to strengthen her research. With this step - continuing her education post-matric, and also leaving her home country (Lesotho) - she is already defying many of the pre-conceived ideas that exist around people living with albinism.
According to her studies, people with albinism 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.??And those aren’t the only challenges they face.
“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. But not all people living with albinism realize the danger of not applying a good sunblock, and to us, skin cancer is a cruel reality.”
?Growing up wasn’t easy either.
“Show me a child who doesn’t want to fit in and enjoy playing outside in the sun?” she asks. “At primary school I would get into fights for being bullied for the way I look. But we had a fantastic support system at home, and there were members of the community, particularly our neighbors, who would speak up for us as a family living with albinism.”??Further challenges: albinos are generally colourblind, and often have poor eyesight.
“Our spectacles need to be tinted, because the absence of melanin means abnormal development of the retina - and the tint helps reduce the amount of light entering the eyes,” she says. “And operating a cellphone is also a challenge: the text is simply too small, even at the biggest font.”
?Her four siblings all have the same condition, each one with bad eyesight - but she’s the worst off, due to an accident when she ran into metal wires as a child.??
“My brother and father are able to drive and are married to normally-sighted partners who can help them in challenging driving conditions, reading overhead road signs which would indicate turnoffs.”
?Then there’s the problem of never feeling entirely safe - emotionally or otherwise - because of superstitions and misunderstandings.
“The body parts of a person living with albinism are often used in muti,” according to Hape. And people may befriend you, but you realize very late that the friendship was not genuine - they believe you will attract good luck or money in their lives. Otherwise there is no other way of telling, unless we enter into a friendship, thus making us vulnerable.”
Looking Around, Looking Ahead
??Hape’s vision issues affected her early on.
”I had to repeat grade 5, simply because I couldn’t see properly. And this type of thing can demoralize people with albinism - they often think they’re not smart enough to make it .”
Hape secretly hopes to be able to drive one day, despite those issues.
?“Unfortunately, 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.”
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 by the opposite sex as females with melanin?” she asks. “It’s an interesting question - my next thesis will tackle that.”
?She’s happy to be part of policy forming matters in favour of 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.”