Wednesday, April 28, 2010

A Post Worth Reading

Fionn's hair - before brushing

I just wanted to share this post written by another mother of a child with albinism. We don't necessarily take the same approach to the word "albino" as their family does, but she has great points and interesting links. Her discussion of how people equate people with albinism to animals with albinism really struck home for me. When Emerson was first diagnosed, friends and family were constantly emailing me chain emails with pictures of white squirrels or deer. I really appreciated it because they sent it out of love for what we were going through and it was a reminder of how beautiful and diverse the natural world is.

Over time, though, these kinds of emails started bothering me. When sent by someone close to us, I appreciated their intention, but the fact remained that they had received this chain because this animal was a "freak" to be gawked at. The hundreds of people who had passed the email along before it got to me most likely did not pass it along because they knew someone with albinism and understood what it meant. They hit "forward" because it was a digital freak show - just like the "People of Walmart."

Just this morning I was at Trader Joe's having one of those outings where everyone in the building decides to invade our personal space. One woman stopped and started stroking Fionn's hair repeatedly, several stopped and stared point blank. Then one man came running up and got right into Fionn's face, saying, "Is he albino?!!" I said politely, "No, he has albinism." The man didn't seem to hear me and, speaking in the loudest voice possible to attract the two or three people in the store who weren't already staring, proceeded to run the entire list of hackneyed expressions about the color of his eyes and hair. The only new one was, "He's a million dollar baby! A million dollar baby." As he ran his fingers through Fionn's already manhandled hair. (Thank goodness the one with apparently irresistible curls is also the social one. If Emerson was in Fionn's position, I'd be breaking a lot of arms.)

As if this wasn't enough, the man then yelled, "Wait, I have to go get my wife so she can see him!" I tried to make an exit, but apparently said wife was very close. As we repeated this entire scene again, at full voice, another parent with a boy Fionn's age shot me a very sympathetic look. He and I had exchanged pleasantries several times during the shopping trip and our boys had taken an interest in each other. His look said a lot. And I appreciated it.


  1. As hard as it is, try not to think too badly of these poor stupid people. Human frailty is such a very real thing, but for the most part they mean well. For what it's worth being ignored isn't that great either, I'm a middle-aged woman--there is nothing more invisible.

  2. I'll use Saskia's new favorite phrase: O.M.G! I think I would be breaking arms on a regular basis. What makes people think they can act that way towards children! Your kids are human beings, not cute little pets. No one has a right to touch them uninvited, or make comments about them other than, 'what a cutie!' oooh, that just makes me furious!

  3. Emerson's thinking "touch my head... I dare you freak...!"

    On a side note you take the most amazing pictures, they really capture the personalities of your boys.

  4. If it make you feel better... and I am sure it doesn't... People try to touch Will all the time. The especially like to touch his toes... and rub his hairless head. And I apologize for once sending you a picture of a albino crocodile. I didn't realize that is bothered you.

  5. I have no idea how you remain polite to these people day in and day out. They're not mean...but they are insensitive and ignorant and need to be educated as to how to treat people with respect. DO NOT touch another person's child without permission (cannot believe that), I don't care how beautiful s/he is. Strangers have stroked Ally's head in public and I asked them to stop. Children are not "show and tell"...seriously...this is just basic etiquette.