Albinism is a condition which is often misunderstood. Guest blogger, Tapiwa Gwen Marange, gives a candid account of her experiences, as an African woman with albinism.
In the black community they say we are white. In the white community, they say we are whiter than white, and I say does skin colour really matter?
In Africa, giving birth to a white child causes confusion, mistrust and in the search of an explanation, superstitions abound. We, people with albinism, are stigmatized. We are seen as outcasts, our families are ashamed of us and society does not embrace us. In some cases pregnant women spit in their clothes when they come across a person with albinism as a way of asking their gods not to give them a child with albinism. It is so sad that, in Zimbabwe, some men with HIV rape women with albinism, believing that the virus will be cured. In other countries like Tanzania people with albinism are murdered by those who believe that their body parts can bring wealth or boost one’s political career. All these are harmful beliefs which cause people with albinism to live in constant fear for their safety.
We are in the 21st century and what seems to be wrong in this day and age is a society which discriminates others because of their skin colour. Families reject children with Albinism and mothers who give birth to children with Albinism are often abandoned by their husbands. Women with albinism endure the agony of not being accepted by their in-laws. Then there are employers who refuse to hire a well qualified job applicant, due to fear of causing discomfort to other workers or that their pale skin might scare away potential customers.
Some school children with albinism are reluctant to attend school as they fear being laughed at and called nasty names such as “murungudunhu’ or “inkawu.” These terms are intended to degrade and hurt those with the condition. I remember my first day in school, nobody wanted to sit next to me, no one wanted to shake my hand. I was constantly teased and called ‘musope ane masamba’ – an albino with freckles. I was a child; this hurt and confused me. Now I am a grown woman and the same scenario still exists. But now I do not hurt or feel confused because I now know who I am.
What is albinism?
Albinism is an inherited generic condition that is present at birth. It is characterized by lack of melanin, the pigment that gives colour to the skin, hair and eyes. The skin lacks the dark pigment melanin which helps protect the skin from the sun’s ultraviolet radiation. This means people with this condition have an increased risk of sunburn and skin cancer caused by direct sunlight. In order to avoid sun burn, people with albinism have to use sunscreen lotion with a high sun protection factor (SPF) and always wear protective clothing before getting into the sun.
Banish the superstition
Albinism is not a disease but a condition which is not contagious. It cannot be spread by physical contact. Albinism cannot enter the womb of a pregnant woman just because she looked at a person with albinism. In spite of what superstitions say, my having albinism does not make me a lucky charm. Albinism is only the lack of skin pigment.
Albinism is not a curse, albinism is beauty. People with albinism deserve dignity just like every other human being. In one of his songs, the late great Lucky Dube sang the words, ‘different colours one people.’ We might have a different skin colour, but we are all equal and made in the same image.
Before making judgments about people, based purely on skin colour, we must always ask ourselves; WHAT REALLY IS COLOUR? Once we interrogate our prejudices, we are one step closer to ending discrimination against people with albinism.
Gwen Marange is the founder of Alive Albinism Initiative, a platform to educate society and to empower people with albinism.