TONGUE-TIED

I’ve been thinking that I’m an expert on most things disability, and most certainly Down syndrome since I have a young daughter with an extra copy of the 21st chromosome. The moment I realized I was wrong was oh so very awkward.

I was at a Down syndrome conference. The corridor of the hotel is buzzing with parents and vendors mingling between sessions. The theme is inclusion.

With a fresh cup of coffee in hand and a smile on my face, I look around and see a lot of familiar faces. Then a friend approaches and introduces her daughter. A beautiful teenage girl who has Down syndrome. It was like looking at my future.

I smile and say, “hi.” She smiles and says, hi back. Then I freeze. Time seems to slow down, way down. I look around and see a crowd of people suddenly appear around us, all eyes on me, especially the mother’s. I felt myself jump out of my body as I began to sweat. This microsecond in time felt like an eternity. My mind races as I try to figure out what to say next. The pause lingers, too long. I look back at her mother before turning to her and say, “So, are you having fun?” She says, “yes.” I turn to her mother and say, “sorry, I need to go to the bathroom.” I cower away in shame.

I stand in the bathroom and wonder, what just happened?

Since then, I’ve been trying to piece together why I felt so uncomfortable. I recall that before I had my son, I felt very uncomfortable trying to talk to little boys. Now that boy talk is part of my every day life, I know exactly what to say. No matter the season, I ask them what they’re going to be, or just were, for Halloween. Once I get this critical information, we move on to discussing the types of movies, books, and television shows they like. This is a winning formula. Yet when I’m around teenage boys, I’m back at square one. I have no idea how to talk to them since I haven’t had to relate to teenage boys since I was a teenage girl and we all remember how awkward those exchanges were.

But there’s more to my exchange with this teenage girl with Down syndrome. When I’m around our neighbor’s teenage sons, I’m not squirming or sweating. I just don’t know how to talk to them and don’t really care much. Why was having the most basic conversation with this teenage girl so different?

I finally opened up to a friend and colleague about this and she immediately knew the answer. She said, “It’s because you didn’t grow up with Inclusion.” The proverbial light bulb turned on as I remember … when I went to high school, people with disabilities were in the back trailers. I didn’t even know we had people with disabilities at our high school until my senior year, when I had my first class in the back of the school. They were even on a different lunch schedule.

The first person I ever met who had Down syndrome was my daughter. Coming to this realization makes me cringe. This is one of the many reasons I fight to have my daughter included. It’s important for her; but it might be more important for her typically developing peers.

There is a level of comfort we all gain by simply being around different types of people. Young, old, rich, poor, male, female, disability or no disability; interacting with a wide range of people allows us to gain from their different perspectives.

I’m still no expert. But becoming aware of my hurdles is helping me learn and grow as a person. I’m making an effort to make up for lost time and experiences with people who have disabilities. And I will continue to fight for Inclusion, because now more than ever, I know it’s a vital part in changing our world … one person at a time.

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