Thursday, September 4, 2008
For those of you who don't know, I've been working on a book, a memoir of sorts, about my experiences raising a child with a severe disability. I'm struggling now with the structure of the manuscript, trying to shape the several hundred pages into a book. It's not linear at times and other times it's the simple telling of our story, but one of the devices I use to tell that story is the insertion of quick one or two-paragraph chapters entitled "Things People Say." The impetus to really write my book began with "things people said," the often outlandish or rude or shocking things that people say when they find out Sophie is disabled. They're also those moments where I've chosen to think "hmmm-- that'll go in my book," as opposed to "where's the gun when I really need it?"
So tonight, I had one of those "things people say" moments that just begged to be written down.
I went to a meeting at my two boys' new school tonight and picked up a friend on the way. We also went to pick up someone she knew who had asked for a ride, someone whom I've never met. We chit-chatted on the way to the event and when we pulled into the parking lot of the school a little late, realized that there were no parking spaces left. Except for a handicapped one. Now, I want to emphasize that I really NEVER exploit our handicapped placard (o.k., occasionally I overstay a meter and if it's hanging on the rear view mirror, I don't get a ticket). At risk of sounding self-righteous, I feel a sense of pride that I take it seriously, and when Sophie is not in the car, I never use a handicapped space. Except that tonight I felt like it was the only space left, and there were other cars parked haphazardly in the other handicapped spaces so it didn't seem like anyone was going to use it anyway and we were late and etc. etc.
I said, "O.K. should I use the handicapped placard?" And quickly explained that I really never use it when Sophie isn't with me. I told the woman that I didn't know -- let's call her Shirley -- that my daughter was handicapped.
She said, "What's wrong with her?"
I said, "She has seizures."
AND HERE'S THE "THINGS PEOPLE SAY MOMENT":
Shirley said, "AND THEY GIVE YOU A PLACARD FOR THAT?"
I know it sounds nutty, but my first impulse with this sort of thing is to feel apologetic and want to, well, explain things. Even though every fiber of my being is taken aback, I laugh, probably an uncomfortable laugh, and say something lame like, "Oh, no. She has more than just seizures. She doesn't walk well. She's really disabled." Like I need to prove it or something.
In the book I'd just leave it at the thing that the person said. Let it speak for itself without explanation. But the great thing about a blog is that I can also do a "Things That I Thought." And this is what I should have said in response to her rude, insensitive and ignorant remark (and she did go to an Ivy League college, so I can't give her any slack on this one for ignorance).
Oh, she's thirteen and still wears diapers. She needs help eating and drinking and walking. She has seizures just about every day. So, yeah, THEY give a placard for that. Isn't that great! To have a placard! Aren't we lucky?
The good thing about these moments is that I actually feel grateful when they occur. They make me crazy in a sense, but they really make me laugh more. And they make good stories, don't you think?