looking at life through a platinum blonde fringe.

My story part 2

So this is the second part of my talk. I actually thought I’d lost it … not to be.

To those people here with albinism…hi. I understand your journey.

But can I say something? This conference, even though it’s called AFA beyond the stereotype…’s not all about us.

Oh its about albinism, but it’s not all about us individually.

You got teased and bullied? Me too. So did the other people here. But you know what? If you still have problems with that, you are allowing that ten or twelve year old school bully still have power over your life. Are you really still afraid of that ten year old?

People are insensitive. That’s because they’re human and they’re scared or unsure.

It hurts, but instead of being bitter and angry why can’t we use that emotional energy for education, for advocacy and for informing people of our condition?

I make absolutely no apology for calling it a condition. Albinism has been called a genetic mutation, a disease and an anomaly.

What would you like it to be called? Then it’s our role to educate people to that.

I overheard conversations yesterday from all round the place, most of which I have filed away in a vague part of my brain.

Some I want to answer to were comments I heard after (mother of a child with albinism) beautiful and heartfelt talk.

“Can’t she see we’re all successful?”

“Don’t they know how much we achieve in our lives?”

“How could she say she cried when her baby was diagnosed? How insulting”.


When I was convinced my ten day old daughter was deaf I cried for days (She wasn’t by the way it was amniotic fluid in her ear canal)

It in no way lessened my love for her or her perfection. It didn’t make her look inferior or inadequate in my eyes. I wasn’t saying deaf people need sympathy or that they are in any way “defective”.

As a parent you want the absolute best for your child and you want smooth roads to success ad no barrier to achievement. When something, anything looks like it may even remotely mar that perfect canvas you project, be it being deaf or having albinism – you heart breaks a little.

Not because of the diagnosis or the life led by those with the same diagnosis… but because your child will have a hurdle of some sort to get over before that perfect life can be attained.

“Can’t these people see how successful we are and that we are intelligent achievers?” YES YES YES

That is what gives (her) and every other parent here the courage and inspiration to get out of bed every day and fight for their child. Not because we have had challenges, but because we have faced and overcome them.

Parents, please don’t let our stories here upset or frighten you.

YOU are the connection between your child and their adulthood. YOU are the key to their self acceptance and their individual success.

By being here, seeking information, you are making the first major inroads. Thank you so much for that.. .

Some if us talk on or touch on bullying or teasing. I bet you were a victim of that also. Maybe you were the fat kid the tall kid or the nerdy kid.

Maybe you were the kid who brought garlic and olives to school for lunch every day.

When we talk about this we are in no way negating your own experience or saying ours was worse, it’s just that here, we feel safe to talk about it.

Be your child’s voice. If their school claims it has a zero tolerance of bullying, make them believe it. (I have talked to school principals on mean girls and physical violence; it only takes one voice)

Equip your child. No more than they need or can emotionally cope with at any given age or stage but empower them with information about their world and look for the good in it.

Don’t focus on the negative. They tell you your kid won’t drive? What do they know? With the advances in GPS and bioptics, etc…who KNOWS?

It’s not up to you to tell them what they can’t do, show them what they CAN.

Be open an accessible at all times. Let them know they can discuss anything when they’re ready.

Don’t pursue it or lead conversations, just be there.

Adopt a mentor. Any of us would be happy to email or chat to your child.

Join the AFA, seek us out on facebook.  If there’s anything you’re not sure of you can ask there and someone has been through it and can help.

By the way… Did you see those kids on the beach with (photographer)  last night?

Have you seen their joy and their passion? Never lose sight of that.

Your child will BE OKAY. You child will be MORE THAN OKAY.

They’ll be fabulous and beautiful and gorgeous when you are and when you allow them to be – fabulous and beautiful and gorgeous about their albinism.

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