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:
National Organisation for Albinism and Hypopigmentation (NOAH)
Albinism Fellowship of Australia (AFA)
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Great post Kirsty. I learnt alot from it.
I guess I had never considered the role models in popular culture for albinism and the effects this may have on popular perceptions and discrimination. I look forwsrd to your future posts.
Thanks Bronwyn. I must say that there are some higher profile PWA in the US (models and musicians) but they are not very well known here and certainly not high profile enough to counteract popular perceptions. Let’s hope that can change in future.
Thanks for sharing Kirsty. There was a lot that I had no idea about.
From what I know of you, I know that Gilbert will be as well prepared as he possibly can be for ‘when’ it happens.
Have the best day !
Thanks, we’re doing our best. We get stares from strangers but no-one has said anything in my hearing, anyway. I hope the force of his amazing personality will help shield him from anything that happens to be directed his way in future – fingers crossed.
Great post Kirsty. My young fellow also has OCA and some of the comments people have made to us and him have been very confronting. I look forward to reading your future posts! Bronwyn
I’m sorry to hear that Bronwyn. I think we have been saved in a way as Gilbert can’t bear to go anywhere without a hat (even to shopping centres, the library, etc) so his hair is covered up most of the time. He also walks looking down because of his vision so I don’t think a lot of strangers recognise that he has albinism at all. Let me know if there is anything you think I should cover in future posts, I would the input of others!
Kirsty,thanks for sharing with us.I went to school with an Aboriginal girl who had Albinism. She was teased but I know we have come a long way in educating people now. All you can do is educate and support Gilbert and his peer group.
Thanks for sharing your experience Lisa. Before my son’s diagnosis I had only ever encountered a woman with albinism at my office. She was an inspiration and showed me that even with severe vision impairment, you can overcome pretty much anything. I still think of her often when I look at my son and I’m determined to give him all the opportunities that I possibly can.
That’s horrific that African story – and to happen now?? Astounding.
Didn’t Chevy Chase have a movie that raised this? (or was the Chevy Chase one part of the problem and another SNL comedian raised it – the evil portrayal?
I’m not sure about the Chevy Chase thing but the atrocities in Africa are happening and they are real. The proportion of PWA in Africa is actually higher than it is in the west and the entrenched prejudices and myths amongst the population are frightening. It is truly horrific.
Wow! This is such a thought-provoking post. I do had not considered the idea of PWA role models in popular culture. You’ve got me thinking about other minorities and their representation. This is a really important issue, K. X
Thanks Robo and thanks for sharing this too. I’ve been mulling over this one for a while and as my son gets older it’s more important for him to see that he is normal. It’s important that he realises that he is not alone in having albinism and that he can see others with albinism striving and achieving rather than the stereotypical view.
So true Kirsty, I can think of many villains with albinism but no positive role models. And to hear of those things in Africa, what am eye opener. Looking forward to reading further info from you about this.
Hello from #teamIBOT
Thanks for that. There are some high profile PWA in the US but they are nowhere near high profile enough to change the popular view anytime soon. It would be awesome to see that change in my lifetime!
Thanks Kirsty, I’d really like to learn more. I’ve always wondered how you go with outdoor activities. Things like school sports carnivals, or even family camping trips. Are they possible for Gilbert at all?
Great question Jess (gosh I sound like a school teacher, don’t I?). We have become a very indoor oriented family out of necessity. He can do things for short bursts outside but we try to keep him out of the sun in the middle of the day in summer especially. He wears long sleeved shirts, hats and sunscreen all year round. At our recent sports carnival, he spent as much time as possible under the shade of a tent and we took care to reapply sunscreen at regular intervals. It can be a challenge but we still manage to get out and about – but luckily we were not huge outdoorsy people to begin with!
foul play was the movie. from 1978. enough with the albino villains.
I couldn’t agree more Victoria!
Great post Kirsty – I went to high school with a girl who was an albino – I didn’t even blink an eye about it and actually think it was kinda cool. Good on you for posting this!
Very interesting stuff, I look forward to reading more. I love finding out more about something you know of, but not much about.
Thanks for sharing this Kirsty – it was very informative and interesting.I hope Gilbert continues to thrive and has a + self esteem with your guidance.
Bravo. I am an adult with albinism. I have HPS type 1 albinism. Sadly for us, most with HPS never get a diagnosis until something bad happens. We’re just told we have albinism. As kids, we often take the lead about how to cope with things from our parents. Finding other adults with albinism to be role models is one thing that can be done. But, just encouraging kids to take pride in who they are is the most special gift. Way to go!!!!
Thanks for this post – I learnt something today. You know I will be busy trying to think of positive examples or role models with albinism now!
Thank you so much Kirsty for raising our awareness. I remember meeting a boy with albinism. He was quite the introvert but I particularly remember his intense sensitivity to the sun. He had special sunglasses and had very pale skin.
So glad to hear that Gilbert hasn’t been exposed to any teasing or taunting.
I hope in the years to come, there’s even more awareness.
Have a look:
Go on to page 2.
Here’s a list of movies: http://www.skinema.com/AlbinismList2005.html
What a great post, thank you Kirsty! I had no idea of how albinism was considered in the countries that you wrote of. Awareness raising is so important and I am so glad that Gilbert has not been on the receiving end of anything nasty. He sounds like an awesome kid! xx
I am also an albino residing in India.Fortunately I have also not faced any such problems as mentioned by you. Though due to ignorance and lack of awareness in this part of the world many albinos to face a lot of tissues in day to day living. I am also trying in ways to spread awareness. Appreciate your effort.