Albinism – the ugly truth.

A few years ago there was a cluster of news specials on the atrocities in Tanzania with people who have albinism.  There are still countless stories of albinos being hunted down and their limbs hacked off for sale to witch doctors.   The fear and horror they live with is mind boggling and resonates with me at a very deep level.

Any Google search will bring up endless articles of the ongoing atrocities, but there is a particular website  with some very current information and is a Canadian company advocating justice for these endangered people.
I became aware of the plight of tens of thousands of albinos in Tanzania before we adopted our first little girl from China.  I was astounded to learn of the hardships they faced due to powerful myths and those taking advantage of the ignorance of others for financial gain.

In China, although life is better in the urban centers, albinos are considered bad luck.  I have heard it said that it’s not because of the albinism per se, but rather not being born “normal” and therefore forever ostracized in case their bad luck was contagious.

Because of this, albinos aren’t sent to school, struggle to find employment and many times end up blind due to poor vision care.

So that there is no misunderstanding, this is not a plea for support of this particular cause. I would, however, like to dispel a few misconceptions that I have encountered since bringing Elena (who is 2, from China and has albinism) home a few months ago.

What most people ask me is if she is delayed in anyway.  If she were, that would be fine, but she isn’t, and through my research prior to adopting her older sister, I discovered that higher intelligence is one characteristic of albinism.  At this point, Elena seems to be a pretty normal little 2 year old.

The other characteristics that most people are aware of are lack of pigment in the skin and eyes, light sensitivity and low vision.

These are all true, but just as not one of us is exactly the same as another, not withstanding multiples, the same holds true for people with different degrees of albinism.

Almost everyone is surprised that Elena’s eyes are a beautiful sky blue and not pink or purple.  As far as I know, there are no albinos with pink eyes.  At times, due to low pigment in the eye, the blood vessels might show through – just as ours can after a late night – but most have envy worthy blue eyes.  The gene is recessive which means that neither parent need have any visible albino characteristics.  Same can be said for the children of two albino parents, they may not have any physical manifestations of albinism.

I have been asked some very unexpected questions:

Did you know she’s albino?

Is that her hair and if so, what colour would you call that?

Can she see?

Is she slow?

She doesn’t look Chinese, are you sure?

Why won’t she open her eyes, what’s all the squinting about?

Although I’m shamelessly sarcastic at every possible opportunity, I try to bite my tongue and look at them as an opportunity to “normalize” her condition to other people.

Eric (8) who utterly cherishes her, worries endlessly about the bullying she’ll face at school and the stares and whispers we already get.  He is the consummate big brother and her biggest ally.

Patrick (5)  on the other hand is proud of her uniqueness.  His innocence is inspiring and beautiful and I wish it would never end.  A friend in the playground was trying to show him his cool toy and Patrick said “you want to see “cool”, look at my sister, she’s albino and she can’t see like we can and she’s really cool” all the while hugging her and beaming with overt pride.

It makes me wonder where our biases are born.

If you want to know more about the albinos in Tanzania, I’m sure anyone at “Under The Same Sun” would be happy to answer any questions you might have.

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