Brenna and Courtney Westlake wrote for last year’s Ichthyosis Awareness Month Blog Project. Brenna is two now – and she’s grown so much. She wears glasses now (so cute!) and is progressing with her feeding. Courtney is learning a lot about the social aspects of Ichthyosis – her post for this years IAM blog project is testament to that.

I’m really glad Courtney wrote this post. I feel like I’m forever battling with people trying to convince them that it’s not ok to ask someone about their appearance. When I was in NYC I had a particularly rude woman interrupt me to ask whether I had laser treatment or was sunburn. I shut her down politely. She ended the exchange by telling me I should be glad someone is even talking to me!

On recalling the story, people asked whether the woman was really being rude, or did she mean well?, or even whether I should have used this situation as an education opportunity? I’ve experienced enough questions and comments to discern what’s rude and what warrants a detailed reply. As for the educational opportunity – I just want to get on with my day, you know. I educate where I can – more so here – but I’m not obliged to in real time. Questions and comments are tiring, and very intrusive. I think it’s very easy to dismiss rudeness and acceptance of intrusive questions when one is not experienced in being asked them.

You can follow Brenna’s progress and Courtney’s reflections here. Brenna has Harlequin Ichthyosis.

Say hi to Brenna and Courtney again!

“It took me many months, but I finally realized what Carly meant when she has written many times about how personal it is to ask someone about why they look the way they do.

My daughter Brenna was born in December 2011 with Harlequin Ichthyosis – a different form of ichthyosis than Carly’s, but very similar in appearance – and most questions that have come my way about Brenna’s skin have been kind and caring. But after a cashier at Babies R Us last year practically shrieked, incredulously, “did your baby get SUNBURNED?!”, I was indignant and defensive.

I realized that asking about someone’s appearance is a lot like asking someone how much money is in their bank account.

It may be no big deal. Just as some people may be very comfortable with the ‘total’ line on their checkbook, someone might be completely nonchalant about discussing their visual difference.

However, it’s a very personal question, and it could be offensive.

It might embarrass that person, or there may be a long and upsetting story behind the answer.

And the bottom line is that it doesn’t matter. Just as you shouldn’t treat anyone less kind because of how much money they have, your reaction to someone who looks “different” should be the same to someone who doesn’t have physical differences.

Because, as I’ve learned in nearly 2.5 years with Brenna, “different” is actually not so different after all.

You may first notice Brenna’s deep red coloring or her dry skin flaking off as she plays…but once you realize that her appearance doesn’t matter, you’ll simply see a child enjoying life with her brother and her parents.

You’ll see a child who loves animals and pizza, who can’t get enough of her pacifier, and who begs for book after book. A toddler who throws fits when she doesn’t get what she wants and who will jump at the chance to go for a walk in her stroller any time.

And I would guess that once you stop paying attention to her skin, you’ll realize she’s not so different from your own children.”

 

May is Ichthyosis Awareness Month – I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.