Years ago, I worked in a large publishing company in New Jersey. The headquarters was in an old warehouse--really long corridors, metal cubicles (yes, I know!), cement floors. One of the employees was a dwarf. I dreaded seeing him at the other end of a long hallway because I knew I would feel flustered when I eventually walked by him and I had so much time to fret about my reaction. Where would I look? Do I look away? Act like I'm busy reading something? Try to look at him, but just long enough?
At one point, this coworker wore a t-shirt that read "Keep Back 200 Feet." Today I know that this is a standard-issue firefighting shirt, but at the time, I was sure the words were a direct message to people like me, who stayed far away from him because of our embarrassment. (I know--the world revolves around me.)
This awkwardness was pretty typical for me. And when the person with special needs was a child, my response usually went like this: First I had a great desire to confirm (by subtly peeking) that something was indeed "off," and then I tried to diagnose the disorder myself. (I wonder why this was reassuring to me?)
Then something like smugness entered in. I/we don't or even WON'T have that problem with our kids. This is an ugly truth, but there was some part of me that thought that I was immune to having a special needs child. Why, I follow all the rules, of course, all the prenatal testing, vitamins, risk aversion, etc. In my mind, there was a smidgen of blame for the parents of special needs kids.
This is not pretty, and I'm ashamed of what cycled through my mind. But I think at the bottom of this ugliness was an awkwardness, even fear: This is too close. It makes me nervous. I don't know what to say. I feel bad for the parent. And for goodness' sake, I really don't want that. Please, God, I couldn't bear that burden. My responses were a form of distancing, I believe. We distance ourselves from the awkwardness and, sadly, from the kids and parents.
Enter autism. For the first six months after Soren's diagnosis, I worked so hard no to make the Others feel less awkward. I'll admit I tried to extinguish any typical autistic behavior that Soren exhibited (walking in circles and echolalia, for example). I stayed home from places where his behavior would be more noticeable (the grocery store). And I kept this diagnosis from most friends and acquaintances. I just didn't want the judgment, the pity, the awkwardness, and definitely not the distancing.
So this blog is a freedom of sorts. I want to be transparent, and I want to move from protecting Others from feeling awkward to just living our lives out in the open. I hope that some day, we all will have been around enough unique people that we won't feel so awkward and we'll instead pop that bubble that separates us from what we fear.
I'd love to hear your feedback on this issue.