Like everything, unless you are directly affected by something you just don’t have the time or energy to really think too much about it. Life is busy enough for all of us, as it is.
I know I don’t have the time or energy to research things that have no direct bearing or relevance on my life – do you?
Before I gave birth to my first child, I was aware of albinism. Or, rather I was aware of the term, albino. I “knew” people with albinism were pale, had red eyes and were of questionable morality. I only “knew” this because of the popular representation of albinism in literature and in the movies.
But I had never sat down and researched the condition in detail because there was no real reason to do so – it had no direct bearing on my life.
Until my first born son was diagnosed with albinism at 11 weeks of age.
Only then did I begin to question what I “knew.” Only then did I realise that pretty much all my knowledge of albinism was based on myths.
Since then, nearly 13 years ago now, I’ve learned a lot of things about albinism. And I’ve learned even more things from my son, who has not let a rare and misunderstood condition stop him from doing what he wants to do.
What I've learned about albinism -
What I’ve learned about albinism
I’ve learned that albinism is genetic – that my husband and I both carry an albinism gene and that we both gave our son one each. Neither of our families knew that gene ran on either side, so now we know that many of us are likely carriers of the condition.
I’ve learned that albinism results in a lack of melanin or pigmentation in the hair, skin and eyes. This is why people with albinism often have white hair, pale eyes and sensitive skin. Albinism can occur in all races so the condition can also present differently based on the ethnic background of the person themselves and the type of albinism that they have.
I‘ve learned that albinism comes with significant vision impairment. Our son’s vision is just short of being classed as legally blind. While he can get around without a cane or other mobility aids, he does struggle to pick up detail, has difficulties judging depth & has been known to hug strangers when out and about, thinking they are me!
I’ve learned that people with albinism do not have red eyes. Their eyes can be blue, brown, green and hazel, like everyone else’s. However, the lack of pigmentation in their body means the light that comes into the eye cannot be properly absorbed so it reflects back out again. This can give the appearance of “red eye.”
I’ve learned that people with albinism can go outdoors and lead normal lives, as long as they pay attention to sun safety. My son wears long sleeves all year round and has to wear sunscreen every day of the year to protect his skin. The lack of pigmentation means he has no natural defence against the sun – he will never tan and will always be at greater risk of skin cancer.
What I've learned about my son -
What I’ve learned about my son
Most of all, I’ve learned to never under-estimate what my son can do. I’ve always worried about him being outside in the sun too long or how he’d cope during sport and recreational activities.
After almost 13 years, I’ve finally learned not to worry so much.
Sure, he still hates applying sunscreen and has been known to tell me he has applied it when he hasn’t. But he also knows when he’s had enough time in the sun – he’s not usually out there long enough to get burned (thankfully!) – and is lost without his hat and glasses.
He has never said no to any physical challenge, despite his vision impairment. So he has come to enjoy ten pin bowling, ice skating and even laser tag over the years. While he is not a keen participant in organised sport, he IS a keen viewer of all kinds of sport and spends a lot of his time watching football, tennis and cricket online.
He’s travelled interstate and overseas, flying to New Zealand and to the US and cruising the Caribbean in the last few years. Despite complaints about having to be away from home (he’s a true homebody!), he’s still enjoyed the different sights and new experiences of places far away from home. Walt Disney World, Kennedy Space Centre and Carter Observatory are among his favourites.
From a young age he displayed an insatiable visual interest in letters, numbers and logos, despite his vision impairment. This helped him learn to read early on and has seen him develop a talent for writing. By learning to maximise his vision from the start, he’s been able to successfully attend mainstream school and has just begun his high school education in a gifted and talented class.
While I still worry about bullying and the undeniable fact that he does look different to his peers, he wears this difference as a badge of honour. The very force of his personality means that he has not yet been subject to any unwanted harassment and I’m hopeful that he has developed enough self-confidence to be able to deal with anything that may yet come his way.
Albinism is a lot of things, but it is not something to be feared or pitied. It is not something that deserves scorn, judgement or prejudice. Albinism is merely a genetic difference resulting in a lack of pigmentation.
People with albinism may look different but that’s where any difference ends.
Just ask my son.