I have come into contact with so many people through writing about Ichthyosis. Many of them are parents of kids with Ichthyosis - and they've all got one thing in common. They're all fighting for their child's rights - both medical and social. I see so many of my own childhood experiences repeated - the exclusion and bullying. 20 years on and things haven't changed. Luckily the support network is bigger and so much more accessible though.
Lucy is a woman I admire - shes a mother to Aubry and Chloe - Chloe has Ichthyosis. Lucy is bold and outspoken and I love her assertiveness. She once said she got tattoos to make people stare at her rather than her daughter Chloe. How amazing is that?
Like many proud parents, Lucy posts pictures of her daughter on Facebook. Recently she wrote of how some of the photos of Chloe were reported as offensive and abusive. How awful. I wish people were not so ignorant to think this way about those with visible differences.
Lucy shares anecdotes of parenting Chloe - and while the encounters they've experienced make me sad, the kick arse way she handles them makes me smile.
A few weeks ago I saw this from Lucy:
"This little boy comes up and starts touching chloe.
Chloe let's him pick off a scale that's been bugging her with her help... boy goes back to his mom with it. She starts freaking out and grabs hand sanitizer that's on the stroller and starts telling him in a stern voice about not wanting to catch anything...
I run over "oh my gosh. You almost caught awesomeness. I can't believe it. Thank god your mom only allows you to catch rudeness and spread that around!"
The little boy looks at his mom and I shit you not says "why was I not suppose to touch her mom, she's not dirty." And there she sat not knowing what to say."
Lucy then commented:
"The best part was this little boy of no more than 4 years old. His approach to Chloe...
The wonder in his eyes. He shared with us the story of how he got this huge scab on his elbow from trying to ride his brothers bike. He was curious, he sympathized his elbow with chloes skin.
He asked if he could touch it, if it hurt to take the skin off. He thought it was the coolest thing to feel her skin and said how brave she was.
All I can hope is this mother sees that in her child and doesn't ruin that for him. He was an awesome kid."
And that there is a great example of how attitudes toward diversity are taught. Quite often children are so accepting of diversity, until their parents encourage them not to be.
Please teach your children that difference is nothing to be afraid of. And if they already show kindness and accept everyone, but you as an adult aren't so sure about interacting with people who look different and still have prejudices, let your children teach you something.
For more on teaching children about appearance diversity, click here. For advice for adults on talking to someone who looks different, click here. For more Ichthyosis awareness posts, click here.
wonderful story
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