Wednesday, February 29, 2012

Keep back 200 feet: Feeling awkward around special needs folks

I'm about to be real frank about some thoughts and feelings I used to have about interacting with people with special needs. I think it's important to say these things because our ambivalence in dealing with this population is part of the reason our kids (and their parents) have such a hard time integrating into society. And this segregation probably results in even more awkwardness around our kids.

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.)

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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.


  1. Super brave insight. It is so hard for me not to focus on what other people are thinking. I struggle with keeping that self-consciousness from affecting my "public parenting" but it is really hard. I can't imagine how much harder it is when your child never falls neatly onto the norm. I guess it will get better when society diversifies and when you/we rise above our perception -- or even the reality -- that others are judging us and our kids.

  2. What a wonderful path to be on -- living in the open! I'm sure that it will be a challenge at times, but I know (without any doubts) that you have the wherewithal to pop any and all bubbles that you and those around you have.

    Thank you for opening up. I feel even closer to you than I already did.



  3. Jenny--

    What you say is so true and insightful - and, I think, applies to some extent to almost any kind of "otherness" that exists. There's this odd social pressure to not even acknowledge differences or uniqueness or anything that is unusual. It's as if when we are a part of the general public, we don't know how to deal with anything outside the norm. I think maybe kids are our best compass in some ways. For example, we were out and there was a man with a really painful looking rash over most of his body. The kids, of course, asked questions about it with no sense that it might be "inapprorpiate" or better discussed at another time - like outside of the man's hearing. Maybe they are right. Part of the discomfort of interacting with people who fall outside the norm is the sense, from very early, that it is something to not be discussed. Maybe this is a part of the problem?

    Love your blog. Thanks.



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