Seventeen year old Harry is bright, confident and has a good sense of humour. He is in year 12 and wants to study medicine next year at university. We’ve been working with Harry since he was just a baby and like his proud parents, we’re proud of the young man he is. Harry took time to share with us his experience of living with Albinism.
Image: Harry, right, pictured with friends at the International Albinism Awareness Day event at VisAbility.
What is special to you about Albinism?
I have Albinism, meaning that I have very pale skin, white hair and a vision impairment. I need to wear sunglasses to protect my eyes from the sun and improve my fashion.
Tell us about some of the challenges about living with Albinism.
Sometimes people don’t realise how little I can see especially long distance and when it is really sunny. This can be frustrating when I ask people for directions as their response is usually very detailed and I find them very difficult to follow as I can’t recognise or notice many landmarks.
I have embraced the whole idea of being different and am not shy when it comes to talking about Albinism. It can be challenging remembering people’s names but everyone is very understanding.
It can be hard to recognise people, especially when it is sunny. The glare of the sun makes it difficult to stay outside in the sun for too long.
Some teachers usually forget to enlarge my work which can be very frustrating and makes it easy to fall behind. Albinism does not restrict academic success but I am unable to achieve my potential if my needs aren’t catered for.
Sport can be quite a challenge especially when it is sunny. I’m unable to play sports like footy and tennis but have overcome this and stick to cross country and occasionally rowing.
How do you connect with other people with Albinism?
I’m able to connect with my “Albino” friends through Facebook but it’s great to catch up at VisAbility events like the one for International Albinism Awareness Day.
What is your first memory related to Albinism?
I remember getting really horribly burnt when I first started swimming, it was extremely painful and a wakeup call to always apply sunscreen.
I remember everyone asking me why I was so pale. When I was younger I didn’t have an answer. We used to joke about me having sugar in my hair.
Do you think International Albinism Awareness day can change the way people think about Albinism?
I have found there is a fair amount of confusion when it comes to Albinism. I’m often told by strangers that I’m not an “Albino” because I don’t have red eyes this sometimes can be a little frustrating.
In movies we always seem to be the villains but we need a movie where the person with Albinism is the hero. Also some people don’t realise that I also have a visual impairment, they don’t associated it with Albinism.
What is the one thing you want people to know about Albinism?
Having Albinism can be frustrating at times but you have to take the good with the bad. I always try and look at the positive side and try not to let things get me down. I have embraced the whole idea of being different and am not shy when it comes to talking about Albinism.