A Resolution in Response to a Declaration

My friend, Lisa, over at The Far Side of Complexity recently wrote an excellent post about the way we, as special needs parents, approach questions about our children. Lisa did a marvelous job of articulating a lot of things I have recently been thinking and feeling.

Truth be told, I have had the makings of a similar post brewing in my mind for quite some time, but I have always come up with a million reasons why I shouldn't write it: Fear of offending family/friends/strangers; need to finish work/clean the house/cook dinner/play with Claire; the list goes on.

After reading Lisa's post, I felt compelled to share my own views. So, with Lisa's permission, I sit here tonight, my house a mess, bags still packed from a recent trip, eating take out, putting pen to paper (or, more appropriately, fingers to keyboard).

****

Confession: When I was little, I used to be afraid of disabled people. Yes, afraid. I have no idea why. I mean, disabled people didn't hide under my bed and go "bump" in the night, and there were no rumors floating around the school yard about a band of disabled people luring kids into a windowless black van or sticking razor blades in Halloween candy. Upon reflection, I think my fear was based largely on the fact that I wasn't exposed to many disabled people growing up.

My fear remained with me into my adult years, although it transformed into discomfort. If I were to explain the reasons for my discomfort, they would probably have something to do with not knowing what to do upon encountering a disabled person. I mean, how do you interact without offending?" At a loss, I often would shy away from disabled people, unsure of how to engage.

Case in point: Just a few weeks before we found out about Claire's diagnosis, Brad and I were at Phipps Plaza, a mall in Atlanta, and, while walking through Nordstom, we passed a family pushing a teenage girl in a wheelchair. The girl appeared to be severely disabled: Her head was tilted to one side, she wore a bib, presumably to catch drool, and she was not looking around at her surroundings, perhaps because she was visually impaired. I remember seeing her and her family walking together, then quickly looking away, the first thought in my mind being: "Don't stare, don't stare."

At the time, I probably thought that this was a socially appropriate reaction. After all, we as a society have been trained not to stare. We're told it's impolite. But in my efforts to be "polite," I marginalized this family. I pretended they didn't exist for fear that the opposite reaction - making eye contact - would be misperceived as "staring," which we all know is rude. (Update after an interesting conversation with a co-worker:) Or, conversely, that my efforts to engage would be perceived as disingenuous - my politeness mistaken for "overcompensation" as I tried to demonstrate how open-minded and understanding I really was by going out of my way to be nice. (I mean, there are times when we walk through the mall and don't make eye contact with others that we pass, so why behave differently when we encounter someone with a disability?)

Undoubtedly, those same fears would have made asking about the girl's condition completely -- well -- out of the question. We're constantly taught to be politically correct and mind our p's and q's. We're told we're supposed to use certain words: "Intellectually Impaired," "Developmentally Delayed," "Physically Challenged" and avoid others. We're instructed not to ask questions like "What's wrong with him?" because the word "wrong" implies that the disabled child is somehow "different."

Like Lisa, I think our desire for political correctness has actually stifled that which it is designed to perpetuate: understanding and inclusion. To borrow Lisa's idea, parents of disabled children often spend significant time worrying about how someone asks a question, and they forget to be glad that someone actually asked about their child. And, at the same time, "the rest of the world" spends so much time trying not to offend the "parents of disabled children" that they take the path of least resistance by ignoring them.

For my part, therefore, I resolve to become an ambassador for Claire's condition. I need to constantly remind myself that every question, no matter how it is asked, is an opportunity to engage. I hope other parents of disabled children will do the same.

And for those out there who may not have a disabled child, I encourage you to start a dialogue next time you encounter a parent of a child with special needs, or at least make eye contact and smile. Yes, it may be intimidating, but remember, before they put on the shoes they wear now, many of them, myself included, were in your shoes.