Persons with albinism are human, too!
6 Oct 2020
By Samantha Malebana
A 31-year-old actress and motivational speaker has taken it upon herself to film an albinism awareness documentary, that addresses the misconceptions and myths people have about people with albinism.
In the documentary titled Born Survivor, Regina-Mary Ndlovu from Ennerdale, Gauteng, is filmed going from house to house in the Ekurhuleni township of Katlehong, educating people about albinism.
“Pain, silence, the devil’s ugly voice and self-judgement from all the discrimination I faced, activated me to do the documentary because no matter what I went through, it was not for me to keep quiet but for me to tell somebody that they can overcome it too, because you can only imagine how many more persons with albinism are experiencing discrimination out there,” Ndlovu told ThisAbility.
She said she was contacted by two production companies, StoryScope and Bump, after China Global Television Network (CGTN) put out a commission for a documentary about gender-based violence and other issues of Africa. The documentary was screened by CGTN on September 13.
She chose Katlehong because that is where she volunteers at the Hand That Gives charity organisation for children with disabilities.
Albinism is a condition characterised by the production of little or no pigment melanin, resulting in pale skin, hair and eyes.
Apart from the need for people with albinism to put on sunscreen or wear big sun hats whenever they go out, they also have to deal with persecution and murder because of myths that people with albinism are cursed and their body parts can cure HIV.
Even then, Ndlovu said she was not scared for her safety as a person with albinism to go into the homes of strangers to raise awareness about the condition.
“[The problem] is not what people do not know about albinism; it is what they refuse to know or to see. They refuse to see people with albinism as humans,” she says.
Peggy Kasengele, Ndlovu’s mother, says she did not know the importance of applying sunscreen on a child with albinism to protect them from sunburn nor that her daughter experienced discrimination because of her condition, until she was old enough to tell her all about it.
“This documentary will bring awareness to a lot of parents out there raising children with albinism to know better on how to protect their children, be it health-wise or to be aware of the discrimination they might be experiencing,” Kasengele said.
Ndlovu says part of her raising awareness is to educate people on their use of language that a person is not an ‘albino’ but ‘a person with albinism’.