I’ve been wanting to devote a series of posts to demystifying albinism for a long time now. Albinism is such a misunderstood condition, with so many layers and complexities, that it deserves a series of posts, not just one, to tackle the main myths and misconceptions.
Our eldest, Gilbert, was born with Oculocutaneous Albinism (OCA) in 2004. OCA is a genetic condition passed down from both parents that results in limited or no melanin being produced by the body. This leads to a lack of pigment in the hair, skin and eyes, resulting in vision impairment and acute sensitivity to the sun.
Hence, why people and animals with albinism sport white hair, pale skin and light coloured eyes.
Albinism is rare – only 1 in 17,000 people are born with it in Australia. So it’s not surprising that the condition itself is not at all understood within the general community. No wonder there are so many misconceptions and myths about the condition floating about.
Apart from looking different and having a vision impairment, people with albinism (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.
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.
And it still happens now.
Look around at popular culture. When you think albinism you will probably picture the murderous monk from The DaVinci Code, or the menacing twins from the Matrix.
Silas – The Da Vinci Code
The Twins – The Matrix
More recently, the new Syfy series, Defiance, includes a menacing race of aliens who look eerily similar to those with albinism.
Tarr Family – Defiance
Personally I cannot think of any positive albinism role models in popular culture, which is actually really quite sad.
We would like to raise our boy with healthy self-esteem and a positive sense of self – it’s hard to do this when most popular references to his condition seem to be so overwhelmingly negative.
I should count my blessings however. In other parts of the world, the fate of those with albinism is grave indeed. Across Africa, PWA don’t have access to the sun protection they need, leading to the development of skin cancers and a corresponding reduction in life expectancy.
Furthermore, in Tanzania, some PWA have been murdered for their body parts, which are ground down to make potions to bring luck and prosperity. In Zimbabwe, women with albinism have been raped and subsequently infected with HIV in the mistaken belief that their condition can cure HIV infection in others.
These horrors are the latest in a long line that trace back throughout history – thank goodness these atrocities have not occurred here. However PWA are regularly subjected to bullying, teasing and discrimination because of their appearance.
Personally, we have been very lucky up to this point – we have not experienced any of this with Gilbert but are acutely aware that the time will come. Unfortunately it really is more a matter of ‘when’ than ‘if’.
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.
I intend to further discuss the individual aspects of albinism in future posts but if you have any particular questions you would like me to address, please leave a comment to let me know. I am more than happy to share my knowledge if there is any chance that it can increase awareness, understanding and encourage greater acceptance.
You can also find out more about albinism by following the links below – they have been great resources for us and will definitely help others either needing or wanting to find out more: