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"Confetti Skin, Beauty Within" is our blog about ichthyosis and its effect on our lives. Rachel and our three boys are affected with the form of ichthyosis called "icthyosis en confetti, type 2".

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Here's our summary of our best and most important posts of 2012.

Let’s Talk, In All the Wrong Ways

We are excited to have SooAnn Roberts Pisano join us today! SooAnn is the mother of two boys with two different forms of epidermolysis bullosa and is an active voice in advocacy for those with disabilities.

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We’re all guilty of doing it. There might be at least one occasion that stands out in our memory. We’ve all stared at someone. What caught our attention? A crazy outfit or an amazing tattoo? A disfigurement or a wheelchair perhaps? How often do we strike up a conversation in hopes of finding answers to the swirl of questions rattling around in our heads? More likely, we turn away and allow the silence to serve as false proof as we pretend to others that we never noticed in the first place. We count ourselves lucky that we weren’t caught in the act, with no awkward acknowledgement or forced conversation to follow.

As a child I was taught how not to be rude. Don’t Stare, Don’t Point, Don’t Ask Questions. I think we can all agree that the Don’t Point rule should stay. Unfortunately, the other lessons on being polite are not as sincere in practice as their rooted intentions. It does not teach us to see with our eyes in the same way we would naturally. It essentially instructs us to pretend like you have zero interest at all in what we are seeing and try to appear as natural as possible. It instructs us to remain ignorant about what we do not understand.

 That’s right, I didn’t say “who.” I said said “what.” The curiosity is not necessarily in the person (after all, people aren’t new – we see them every day). It’s in the “what” that makes her different.  There is no offense intended, but if you’re on the other side there’s offense to be taken. Especially if you are a person whose difference is beyond your control, like those born with a genetic disorder or those disabled due to accident or service. After all, the “what” isn’t something separate from her. It’s not like she carries “IT” around in a bucket and then chooses to lug her “IT” bucket alongside her at all hours of day and night. We all know this, yet there are still times that we find ourselves staring, and then choose to ignore rather than educating ourselves.

 Some experts estimate it takes the average adult brain one-tenth of a second to process an object we see[1]. If we are not sure of what we are seeing, our brains dip in to our storage files to create a context for comprehension. Basically, our brains make up a scene that we can understand. And if we have no context for comprehension, it takes our brains even longer to take in what we are seeing, search for other memorable context that plausibly fits, and then spin us a story we can believe to be true based on our own experience. This may explain why we stare, but does not make it acceptable.

 As mom to a three-year-old with EB (Epidermolysis Bullosa), I have gotten used to the quizzical examinations and clumsy questions. I understand that if you have never seen a person who, on first glance, may remind you of a mummy with skin almost completely covered in gauze bandaging (even when it’s 90 degrees out!), it is likely hard to imagine what “IT” could be. I also understand – to a certain point – the moms and dads who provide a hodgepodge of fill-in-the-blank answers to their children’s questions on why my son has so many boo boos from head to toe. (I too have been at the end of my rope with two energetic toddlers pulling at my legs, just hoping to make it out of the grocery store check out unscathed…I get it.)

 I do not mind when people ask if my son has been in an accident, was burned, has allergies or eczema, has a contagious disease or leprosy. (Leprosy…really? That’s your first guess?!) I do, however, worry about how my son will handle his outer appearance being different. So far he has had the protection of being an oblivious three year old, with mom or dad by his side. With the start of preschool around the corner, I wonder how he will handle the stares and innocent but probing questions without me? I wonder how well I will do in dealing with concerned parents of his fellow classmates. I feel for his teachers and school administrators who lack the extensive knowledge about EB that I have as his parent, yet are sure to find themselves in an inquisition of less-than-gracefully-asked questions. Beyond a certain youthful age, we are expected to navigate a politically correct landscape that we as a society have created, but without finely honed skills to shape difficult, real life conversations in a productive way.

 I’d like to take this opportunity to point out the tools we indeed already have, though we may have been taught by a parent or our environment to ignore them. Admittedly, there is no one-size-fits-all solution, no golden answer. There are bound to be mounds of uncomfortable moments and conversations in our future. Perhaps if we can agree on a few ground rules to get us started, we can lessen this and head towards smoother exchanges. The input I offer here is based on numerous comments from adults with disabilities and parents of children with special needs. I also mix in suggestions that are based on my plan to prepare my son to best handle these with confidence and respect. Think of the following five notes as an amalgamated wish list to guide our future encounters, whether in the grocery store or in the classroom.  

 #1 Smile While You Are Staring At Me

Pretty easy, right? Remember that while something specific may have caught our eye, behind “IT” is a person. The very least we can offer along with our long or repeated glances is a smile.

#2 Just Ask…

We are not as cool or slick as we think, so chances are the person we noticed knows we have noticed them. They know we have questions or even strong concerns about their disorder or disability.  If you are worried about the approach, start with these four words: “May I ask you ______?” It works wonders.

#3 …And If It’s Not OK To Ask, I’ll Let You Know (With A Smile)

Recognizing that our curiosity question is an invasion of someone’s personal privacy is a common reason that we hesitate to approach the “elephant in our room.” Receiving a growl-like response is another.  If you start your question with “May I ask you”, this gives both parties a way to prevent discomfort on both sides. It provides an opportunity for someone like me to respond with a simple “I just don’t have it in me today, but if you want to learn more about EB please visit IRefuseEB.org.” I also hand out business cards that contains three sentences explaining EB and the website url. I keep these on hand for days I want to get away with just a smile.

#4 K.I.S.S. IT (Keep “It” Simple & Sweet)

This applies to both sides. Just as one person might not know how to frame the question or are worried about offending, the other might not remember what it’s like to be the novice rather than the expert. To both sides I say, hang in there. It’s going to be OK. Choosing words that are simple and reflective of good intent, and remembering to smile will help.

 On the one side, there is no bigger turn off for me than to hear, “What’s wrong with him?” You might not realize it, but this is hurtful as it implies there is something wrong with my son as a person. He has a rare genetic skin disorder, and refuses to eat carrots or make his bed even when told a thousand times. But I assure you there is nothing wrong with him. “May I ask you about your son’s skin/bandages?” is simple and just plain nicer.

 On the other side, there is no bigger turn off than to hear a drawn out, medical/technical explanation of EB and it’s impact on every part of my son’s past, present and future. I’ve made that mistake before and could just see the person’s eyes gloss over in confusion and regret. Assume that the person asking knows absolutely nothing about their question. Hence the question. I try to keep my answer to under 15 seconds in length. Also, smiling helps as it keeps people engaged in conversation. Plus, its just plain nicer.

#5 End By Saying Thank You

Again, this applies to both sides. Thanks for letting me ask/thanks for asking. Even if it was the most awkward conversation you have ever had in your life, it’s important to encourage each other to have more of them. Without these conversations we are silent, passively promoting ignorance. 

 On that note, Thank You for reading. My hope in writing this goes beyond saving people from as many uncomfortable moments as possible, or minimizing the number of are-you-$@&$-kidding-me glares in reciprocation. I hope that one reader here becomes more informed about a disorder or disability as a result of a conversation that otherwise would not have been had. I hope this proves a tiny drop towards a ripple effect that gets us to talk to each other, even if it’s done in all the wrong ways. After all, while saving face is nice, learning is what’s most important.


[1] As reported by LiveScience in its coverage on May 8, 2013 of a new study on brain processing conducted by Gerrit Maus, Postdoctoral Fellow in Psychology, University of California Berkeley

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