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, and the amount of pigment in the eyes varies.
The albino community often suffers personal ridicule and discrimination.
But many people with albinism are making significant contributions to human endeavours, including research and academia. Someone living with albinism is quietly conducting essential research to help secure the human rights of those living with albinism.
Hape Peshoane, 30, from Lesotho, a Master’s student at 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, particularly albino women in heterosexual relationships.
Even the term “albino” versus “person with albinism” remains a hot topic in the community, Peshoane says. There are some who feel they don’t want to be labelled by a word that has such potential to cause pain, or who feel objectified by the condition and find it dehumanising. Others have made peace with the word and don’t mind “albino”.
“I don’t have a problem but I understand those who do.”
Peshoane left for France at the beginning of the month to collect data to strengthen her research. With this step - continuing her education post-matric, first at the University of the Free State and now at UWC, and leaving her home country - she is already defying many of the preconceived ideas that exist.
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.
“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 aren’t enough awareness campaigns around it. 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 asks. “Not to mention being forced to wear sunblock and a sun hat 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.”
Further challenges: 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 all have the same condition, each one with bad eyesight, but she’s the worst off because of an accident she had 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 which to them would be difficulty with reading overhead road signs which would indicate turnoffs.
Then there’s the feeling of never feeling entirely safe because of superstitions, misunderstandings and traditional beliefs.
“The body parts of a person living with albinism are often used in muti,” Peshoane 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, inasmuch as she is aware of the status of her vision.
“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.
"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 part of policy forming matters in favour of people living with albinism.
“I feel I have a constructive and relevant part to play,” says Peshoane, “and I am excited about what the future holds for people living with albinism.”
Box is communications officer at UWC