June 13 is International Albinism Awareness Day.
My son will be giving a series of talks to classes at his school next week in the lead up to the day. I’m so proud of him and his desire to share his knowledge with his peers. Although I suspect he’s more into the fact he will be like a teacher and have a captive audience for a short time than a desire to really encourage awareness of his condition!
Inspired by his actions (regardless of his motive!) I want to also do my bit to promote the first UN sanctioned day dedicated to increasing awareness and acceptance of albinism around the world.
It’s tragic in many ways that such a day has to be declared at all. However misconceptions, misunderstandings and mistrust have followed albinism since the dawn of time and have led to horrendous atrocities and widespread discrimination against people with albinism (PWA), even to this day.
I want my son to live a full, safe and happy life as a PWA. To that end I fully support International Albinism Awareness Day and the aim to increase awareness and understanding of albinism in order to fight global discrimination and stigma against PWA.
So, here’s 10 of the most common myths surrounding albinism and the truths behind the myths…
1. Albinism is contagious. Albinism is a genetic condition that is passed on by both parents. Each parent must be a carrier AND both pass on an albinism gene for someone to be born with the condition. It cannot be caught and is not contagious.
2. Albinism is a curse or a punishment. Albinism is a genetic condition that results in a lack or total absence of melanin (pigmentation) in the body. It is not a curse or a punishment for past wrongs. It is purely an autosomal-recessive genetic condition that affects around 1 in 20,000 people across the globe.
3. PWA are less intelligent. Albinism does not impact on a person’s intelligence. Albinism merely affects the level of melanin in the body. It has nothing to do with the brain and most people with Albinism have normal levels of intelligence. However due to the lack of melanin present in the development of the eyes, most people with Albinism suffer from significant vision impairment which can affect learning and education outcomes.
4. PWA have red eyes. PWA actually have eyes that range from blue through to brown. However, the lack of melanin that characterises the condition, means that light is not absorbed so well by the eyes and is instead reflected back out, which sometimes leads to a reddish glow in certain lighting conditions.
5. PWA have white skin and hair. Not all PWA are entirely white. PWA from an African background can instead have yellow or orange hair and can also have some level of skin pigmentation. There are many types of albinism too, some of which are characterised by reduced melanin, rather than a complete lack of it. In these cases PWA will appear to have some pigmentation and will therefore not have the stereotypical white skin and hair.
6. PWA are evil. This is a myth perpetuated by society and reinforced by Hollywood. Albinism is, for some, a confronting condition. Anything to do with visible difference is invariably met with distrust. Throughout history, most PWA have been stigmatised, demonised and ostracised, all because of how they look. Apart from looking different and having a vision impairment, PWA are exactly the same as everyone else. Exactly the same. Possessing the same feelings, fears and hopes that the rest of the community share. They are not evil.
7. PWA can cure HIV and their body parts possess magical properties. In 2000-2013 the UN Human Rights Office received over 200 reports of killings and dismembering of people with albinism for ritual purposes in 15 countries. It is also commonly believed in parts of Africa that having sex with someone with albinism can cure HIV. This is not true and has led to violent rapes and rising HIV infection rates in the albinism community. PWA do not possess magical properties nor the power to cure disease.
8. Albinism only affects appearance. Melanin is integral to developing skin, hair and eye colour, however it is also vital for the development of healthy vision. PWA often suffer from significant vision loss due to the lack of melanin present during the development of the eyes in the womb. Together with reduced visual acuity, albinism is also characterised by rapid, involuntary movement of the eyes (nystagmus), difficulty dealing with glare (photophobia) and problems with distance vision and depth perception.
9. PWA cannot go outside during the day. This is a myth. PWA can go outside at any time but need to take extra precautions when out in the sun. Protective clothing, sunscreen and a hat are required all year round to minimise the risk of skin damage from the sun. PWA are not vampires and will not melt or experience pain when out in broad daylight – they can lead a normal life, just with a little more attention to sun safety.
10. PWA are the result of inbreeding or the mixture of two races. PWA are the result of genetics, pure and simple. The rates of albinism in Africa in particular are higher than elsewhere partly due to a long held culture of intermarriage. However the greater prevalence of albinism is due to the limited gene pool not because people are being punished for following long held customs and traditions.
It seems to be a sad fact of life that those who look different will always be treated differently. The history of albinism and of PWA, even now, confirms this. Hopefully learning a little more about the condition will help people better understand it and hopefully lead to greater acceptance by society.
Do you have a question about albinism? Don’t be shy – please ask so I can provide you with a true and factual response!