I have to admit I used to be a theater geek in high school – I was all drama both on and off the stage. Robbie would probably say not much has changed! But one thing I can not seem to get used to is people staring us.
For me, there’s something comfortable about performing on a stage, giving a speech or doing a sermon in church. The crowd is far enough away and big enough that it becomes a faceless mass. Up close, though, is a whole different story. When we walk around in public, I see people look from Robbie to me to Emerson, their eyes squinting in concentration as they try to remember what they learned about genetics in freshman science class. I see people cooing at him, trying to catch his eye and I cringe because I know one of two things will happen: he won’t look at them because they are too far away to see (which makes everyone involved uncomfortable), or he will look at them and the light will make his eyes glow.
This second option elicits all kinds of interesting responses, as I mentioned in a previous post. My favorite recent one was in a subway in Boston last week. A man and his wife and their toddler got on the train and stood next to me, so we struck up a conversation about parenting. When the conversation got around to Emerson’s name and age, the man - standing over Emerson propped on my lap - looked down and cooed his name. To my surprise, he looked straight up at the man and consequently into the overhead lights. The man kind of did a little jump backwards, his eyes got really wide and he stuttered, “His eyes are red! How…how…unique!” He turned to explain to his wife, all in a dither, when suddenly the train doors opened at our stop. I thought about staying on and explaining the whole situation, but instead I said, “Have a good day,” and dashed out.
Of course, there are times when I get paranoid and jump the gun. The other day, for example, we were in line for ice cream at a local shop and Robbie was holding Emerson in his arms (he’s still working on those biceps). I was watching two women watching Emerson and whispering to each other, so I was getting increasingly irritated. Then I heard the woman directly behind us say, “That baby is blind.” I turned to her and said haughtily, “No, he’s not blind!”
Luckily, she was a polite woman who gently explained that she had said, “blonde” not “blind.”
“Yes,” I said, my face growing hot with embarrassment, “he is very blonde.”
At times I get so tired of this routine that I do my best to avoid conversations or I don’t go out of my way to explain things properly. Like a couple of weeks ago when I was answering questions about albinism from a group of people during a party. One man started answering questions for me, which would have been great except that his information was all wrong! He actually told them that sunlight would make people with albinism go blind! I did try to interrupt and correct him several times, but the group had already moved on to the next question. By the end, I just didn’t care anymore to make an issue out of it.
Then I see things like this YouTube video http://www.youtube.com/watch?v=R3rP-lWV9u0 and I’m reminded of how truly ignorant and insensitive people can be. If I don’t educate them, who will? The condition is just not common enough to have roving teams of albinism educators out there.
At least we have technology and the power of the internet. I’ve been able to chat with Lyra’s mom Mashawna and get ideas on how to handle the ups and downs of it all…including her recent idea about creating a “business card” with albinism facts. That way, whether at a party or riding the subway, I can just hand out a card and be done with it. No more repetitious conversations and hopefully fewer myths floating around.
The stares, however, I’m just going to have to get used to. At least with his sunglasses on and all the comments about “What a cool dude!” and “Does he sign autographs?” make me feel like a nanny rushing my celebrity baby through crowds of his adoring fans.
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