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 about 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!
Would you like more support as a special needs parent?
Subscribe to Positive Special Needs Parenting to receive updates, advice and support from someone who's been there (and is still very much there!)
i’m amazed at the date on point 7 – that’s scary! I assumed most of those were myths historically speaking, and that no one actually thought that now….
These myths are more prevalent in Africa but you’d be surprised at the level of ignorance even in our own backyard…
How awesome is your son. Good on him, i hope his talks go really well.
unfortunately misconception is much easier for most people to believe than the truth. I hope the international day makes nore people aware of the facts.
Ann, I hope the day does some good too. I fear though that fear and judgement will win out but the more people who are made aware of the reality of albinism the less that are left in the dark. It will be a slow process but fingers crossed we are on the right track.
Oh my goodness, I had no idea people with albinism were targetted for HIV “cures” or murdered for their body parts, that is truly horrific. I hope spreading awareness halts such evil practices in their tracks!
So do I Amy – it’s truly sickening.
I had no idea there were so many crazy ideas out there – and violent crimes directed at people with this. My goodness!! I already knew about the cause of this as I have read up on many genetic things over time. (I like to educate myself.) It’s scary how society behaves, I am fascinated by it.
The myths and misconceptions are universal although they are not as extreme in the developed world. It’s mainly in Africa where PWA are in the most danger and are the most misunderstood. It is tragic that people are being attacked or losing their lives because of erroneous beliefs. I really hope this international day will start making some positive change for these people x
It’s hard to believe that people believe half of those things. It feels like 1823 when I read that list. Such a lot of stigma attached to a condition someone is simply born with. Point 7 is particularly horrifying. x
Point 7 is horrendous. I have to confess that I sometimes bury my head in the sand over that one – it is hard to accept. But we shouldn’t have to accept discrimination or violence based solely on someone’s appearance. In some parts of the world it really does feel like 1823 when it comes to albinism…
Thank you so much for sharing these, I know next to nothing about albinism so always good to learn more. Thankfully I didn’t have any of these myths floating around in my head!
Most of these myths are held in other parts of the world but as this is for international albinism awareness day I thought I should address them. They are crazy but for some people they are very real beliefs – sad but true. I’m really hoping we can help change their minds so those with albinism in Africa in particular can live their lives without fear.
I’ve known about Albinism for awhile, we had a gorgeous girl with albinism at primary school I always thought she looked like an angel! Great post Kirsty!
Thanks Em. It’s wonderful when people have their own experiences with albinism but for many it is not something they have seen before. I know I didn’t have much knowledge before my son came along – being his mum has certainly been a learning curve!!!
Good on you and your son. Amazing ten points. We need to continue to talk about Albinism positively and influence the change in society. My mother is is a person with Albinism and I would not trade her for anything.
Exactly Senamile. My son is my world and he would not be who he is without his albinism. I’m going to keep trying to find ways to normalise it and try to at least do my bit to increase awareness and understanding. Thanks so much for taking the time to leave a comment – I really appreciate it!
I found this so interesting to read Kirsty. I’ve always thought Albinism was special in a beautiful way, not a freakish vampire way. I don’t understand why people can be so mean about a genetic condition. How proud you must be to see your son want to talk about his albinism. I hope he enjoys doing the talk and does well. x
Thanks Bec. I’m really looking forward to seeing how he goes and, yes, very proud he is doing his bit to spread awareness 🙂
This is awesome, love it. Knowledge is power, good on him 🙂
Dreadful that there are such ignorant misconceptions in existence. Unbelievable really. Your son is lucky to have a Mum like you to inspire him 🙂
But I’m sure he inspires you as well. It will be a proud moment for you Kirsty.
I will most probably sob my eyes out – I’m always a mess when he’s inspiring at school!
What a great post! You must be so proud of your boy! I find it hard to understand that people still believe half this stuff – it’s 2015! I love that your son is going to talk to his peers and teachers because knowledge is power and education always trumps ignorance xx
That’s the plan Sammie. Unfortunately a lot of those myths are still alive and well in other parts of the globe. We’ve been lucky enough to not face too much discrimination or judgement here but in Africa, in particular, life for PWA is not easy.
I m Nitesh from India
i m also a albino
i thankful to u inform me abt albinoism
plz give me al updates to me thanks
Hi Nitesh – thanks for leaving a comment. I don’t always write about albinism here but I will be publishing more posts in the lead up to International Albinism Awareness Day. If you want updates, please sign up to receive updates by email. You can do this by entering your email address in the subscribe box on the right hand side of my home page.
oh my goodness, I can’t believe people would believe these myths? Although, I think Hollywood perpetuates them will several big movies having the ‘bad guys’ with albinism. Thanks for education me a bit more 🙂
Wow. There are some terrible misconceptions there. Yay for your little man spreading awareness!
Thanks for writing this post and raising awareness, Kirsty. I can’t believe #7 still exists. So horrific and sad. You must be so proud of your son. Wishing him the very best for his talks x
He has blown me away this week Grace. His talks were great and then he went on the radio today and talked about albinism and his life to listeners of the ABC too. He is a special kid and I’m very lucky to be his mum!
I knew of Albinism when I was in grade school because we had one child that seemed to be lighter than me. She told us what she had going on and we continued on with our friendship. I thank you for this website, so many people need to know about the differences in a multitude of people be it albinism, autism, etc. My motto is learn, empower, love and accept people as they are. We all make up God’s beautiful blend of people.
Yay for your son creating awareness among peers, even if it is just for his 5 minutes of undivided attention. haha.
I love reading about Albinism in your posts, particularly ones like this where it is busting myths or sharing facts.
Thanks so much Kell – that means a lot to me!