Today, June 13 is World Albinism Awareness Day. Can we talk about these beautiful creatures?
Afin 1, afin 2, afin 3…
This line was from a Yoruba movie I watched when I was just a little child. I remember that the woman who had the albino children faced a lot of insults, names calling and accusations of infidelity because she, a dark-skinned woman married to an equally dark-skinned man, had children with albinism.
The only explanation was that she must have had an affair with an albino to have given birth to albinos. Nothing she said or did could prove her innocence.
Guess what? That sort of formed my belief about albinism until I got into secondary school and my biology teacher taught me about genes, mutation and hereditary.
Let’s get some facts straight here:
Albinism is an inherited disorder characterised by the complete or partial absence of melanin pigment in the skin, hair and eyes. It is caused by mutations in one of several genes that produce or distribute melanin. The lack of melanin (the pigment responsible for the colour of the skin, hair and eyes, and protects the skin from the harmful effects of ultraviolet light) or the reduced amount of melanin production in people with albinism predisposes and makes them more susceptible to sunburn, skin damage, skin cancer, and visual impairment at an early age.
Albinism can be inherited in an autosomal recessive manner i.e. even though this disorder is hereditary, the chances of it been passed on to the next generation is low.
People living with albinism are called albinos. However, some find this term downright offensive and derogatory, some do not, depending on the context in which it was used.
The most preferred term is “Person with Albinism” (PWA).
Side Note: Using this opportunity to apologise to my friend Demola whom I call ‘Demola Afin’. By the way, he has no albinism, but it sure looks like he does. I promise to stop, unless you don’t mind, of course. *wink*
And just like humans, animals, and even plants can have albinism.
I have never been friends with anyone living with albinism, but growing up, I saw movies and read stories that made me realise that albinism is a condition that many do not understand. Blame our superstitious and archaic mentality or the fact that we do not like to research subjects and have a better understanding of them before we shook our mouths into the matter (before discussing).
If you are friends with PWA/albino, then you must have an idea of their problems, challenges and struggles, such as stigmatisation, discrimination, torture, torments, names calling, harassment, bullying, injustice and social rejection. YOU may have, at some point, been guilty of any of these. I’m not judging; I understand that in some parts of the world (peep at Africans), albinism is clouded by our superstitious belief system.
Although, there can never be a justification for how these beliefs and misconceptions sometimes make us borderline infringe on the human rights of persons with albinism.
Five Misconceptions/Myths about albinism
1. Albinism is a curse or punishment: it is commonly believed that albinism is a curse/punishment from the gods for a sin committed in a family, or the atonement of the wrongdoing of ancestors.
TRUTH: Albinism is not a curse. It is a hereditary condition, and a school of thought even believes one in 70 people carries the gene for albinism.
2. People with albinism are sacred beings: this false belief has contributed to the murder of albinos for stupid reasons such as sacrificing them to appease the gods, harvesting and selling their body parts for money, good luck, and power rituals. Some even believe that albinism is the cure of HIV/Aids hence, leading to the rape of girls and women with albinism and further spread of the disease.
TRUTH: People with albinism are not sacred, and neither do they possess any special or magical powers. They are as normal as any other person without albinism.
3. Albinism is contagious: Has your body ever touched that of a PWA and realized your skin colour changing too? Of course not! This misconception that albinism is contagious has sadly, contributed to the discrimination, tormenting, names calling, bullying, rejection and stigmatisation of people with albinism.
TRUTH: Albinism is non-contagious. You can’t have albinism after you’ve been born because it is an inherited genetic condition that can only be passed onto a child if one or both parents carry the defective gene of albinism.
4. Albinism is as a result of the mother’s infidelity: Just like in my opening, illiteracy and ignorance make a lot of people accuse mothers of children with albinism of cheating. This misconception has cost many women to lose their marriage and home, face harassment and endure slut-shaming. Some have even been accused of witchcraft.
TRUTH: Any of both parents can carry the recessive gene for albinism and pass it on to their children, even when none of them have albinism. This means, two normal pigmented parents can have a child with albinism.
5. People with albinism cannot have normal pigmented children. This is absolutely untrue.
TRUTH: so long one of the parents is not a carrier of the recessive gene for albinism (autosomal recessive inheritance pattern), they can have normal pigmented children. And even when both parents carry the gene, the chance of their children being born with albinism is one in four.
Now that you know the truths about albinism, I hope we can start treating PWAs like the normal people that they are? Below are some call to actions for everyone.
Call to Actions
1. If you have a child with albinism, it is important to protect their skin from the sun by using sunscreen with a high SPF factor, wearing hats, long, dark-coloured and long-sleeved items of clothing. This is to prevent premature skin ageing, solar skin damage, reduce sunburn and the risk for skin cancer.
2. Most PWAs have some form of visual impairment which means they may need proper eye care treatments. Don’t mock them for squinting or for not recognizing you from afar.
3. Stop stigmatising or discriminating persons with albinism. It only proves your level of ignorance.
4. Stop violating the human rights of PWA because of their condition. They are as beautiful and wonderfully made as you are.
5. Whenever and however you can, help sensitise as many illiterate mothers of children with albinism, their friends and even the PWA themselves to protect them from condemnation, social rejection and self-esteem issues.
6. Treat PWA as you would people with normal pigmented skin -with love and respect.
7. We, the media, have a huge role to play in sensitising the populace and demystifying the misconceptions about albinism. If you have a platform or a decent amount of following and influence, you have the responsibility to educate your audience.
Go ye into the world and preach THIS gospel! Happy World Albinism Awareness Day.