Wednesday, March 19, 2008

It's hard to be cool

I took the girls to music class again and this time, I decided to bring Hannah's walker. I told the instructor at the last class that I might bring it and she was very supportive. I didn't go into details about Hannah's diagnosis, I just said that she used one and I thought it might make it easier for her to fully participate in the class. She was all for it.

So far, we've only brought the walker out with us on a few other occasions: twice to the mall and once to an environmental education center. All three times, I was pleasantly surprised by the lack of "weirdness" I experienced from people who saw her using it. We got a lot of smiles and curious looks, but that was about it. Given that we've been to music class a half-dozen times and have seen most of the same moms there, I didn't think twice about bringing the walker because I figured if there were any place where I would feel supported and safe, that would be it. So I was a little blindsided when that was where I had my first real encounter with someone's obvious discomfort around disability.

During class, when the instructor had the kids get up and dance around I put Hannah in her walker. When the instructor had them sit, I sat her down and put the walker behind me. When Hannah wasn't using it, some of the kids came over to check it out. One little girl was really into pushing the walker around and her mom kept whispering to her that it was Hannah's and that she needed to leave it alone. I told her mom that it was okay and I explained that I think it's important to normalize adaptive equipment by letting other kids explore it.

As I was talking, this mom kept her eyes averted and sort of mumbles, "As long as you're okay with it." I repeated myself, in an effort to get her to look at me, saying something like "Yeah, I just think it's good to let Hannah see other kids with her walker and for other kids to learn what it's all about." But still she wouldn't meet my eyes.

This is a mom that I've chatted with lots of times, who is always warm and friendly to the girls and I. She knows us all by name and makes a point to greet us when we see her at class or in town. It surprised me that she was so uncomfortable; I wouldn't have expected that from her but then again I really don't know her that well.

It wasn't that she was cruel or purposely offensive in any way. The whole thing really wasn't even that big of a deal in the grand scheme of things. But it still hurt that she couldn't look me in the eye while I tried to share with her how we are working through all of this. Her discomfort was another reminder that while to us, Hannah is Hannah (and oh, yeah, she can't move so well), out in the community she is a kid with an obvious disability. And not everyone knows how to handle that.

I realized that when I go out with Hannah I have to don my "thick skin" armor. I try to smile and act oh-so-cool about the fact that I'm carting around a walker for my daughter with CP. I hope that this attitude will make other people relax and then I won't have to deal with discomfort or, worse, cruelty.

But I can't control every situation and everyone else's reactions. I also can't control my own all of the time. Some days it's hard to be cool and some days I'll meet people who aren't that cool either. Even though I'm getting more and more used to and comfortable with Hannah's special needs, some days are still hard.

2 comments:

Mel said...

You are cool... and I say that because I think you handled the situation beautifully! Sometimes I don't know what to say to people. I might steal your line about adaptive equipment someday;)

Jacolyn said...

We go to KinderMusic once a week and I have to say it sucks! I have to talk myself into in every week because I know it's good for the kids. I haven't taken Grace's walker yet but have thought about. I may give it a try. It's really difficult trying to manage Grace and participate with Mack and Sophie.
btw...you did great!