A couple of days ago I found myself in the car with a sleeping baby and an hour to kill, so I went for a drive. There’s a cemetery in the middle of the city. I like driving up the hills and trying to absorb the view through osmosis, in hopes that I’ll leave a little calmer and wiser.
I watched the sunset for a few minutes before I realized I’d happened upon a flock of teenagers. It was that late afternoon witching hour filled with supposed boredom and an inexhaustible need for togetherness. I watched them sitting on the hoods of their cars, making fun of each other, laughing, and I felt an actual ache in my chest. So ordinary and unremarkable, yet I found myself unable to think of anything else.
I admit that I indulged in some cheesy thoughts about bright futures, dreams, and an oyster analogy.
There was one girl among maybe ten boys, and so of course I imagined one of my girls being her. It came fairly easily. Maybe she was that girl who seemed happier making friends with boys. Maybe she was someone’s girlfriend or sister. At any rate, I mentally time travelled ten years to plop Mouse or Chipmunk in there to see how it felt. Truthfully, the thought kind of disappointed me. It seemed so vanilla. If I’m honest, I have vague notions of the girls growing up doing something other than just wiling away hours with boys playing hacky sack in some cemetery. The moment I thought it, I realized how silly it was to set up vague expectations like that for your children.
Then I tried to imagine LP being one of those boys and I paused. It wasn’t so easy. The idea of him going to meet a crew of friends, maybe with his girlfriend, and kicking a hacky sack around did not seem ordinary at all. Then I felt a second ache in my chest.
Now don’t get confused. I wasn’t feeling that ache because I think there is something about LP himself that precludes him from partaking in that ordinary teenage moment.
What hurts my heart is the idea that the rest of the world might never allow him, a person with Down syndrome, to experience such ordinariness. Here I am worrying about whether my daughters will be ordinary—as if that were something intrinsically bad—while my son may struggle for that choice. I’m fully aware of what parents of pre-teens and teenagers (with Down syndrome) say; I know it is likely that social inclusion will get more difficult. Withheld, even. I can see how it becomes harder to fight the tide, especially if institutions or other parents don’t see eye to eye on what is right.
What should I do, then?
I’m trying to remember that looking ordinary has very little bearing on a person’s real life. Being ordinary is more often than not a façade, after all. We are all different and extraordinary in some way or another. Plus, LP might not want what I saw in the cemetery that day. Still, I do think that some people are afforded the privilege of taking their differences out when they want, while others are involuntarily branded by it.
I don’t have a fix. I want all three of my children to have choices. Plain, old, ordinary choices. Choices between which friend to hang with. Choices between who to date. Choices between places to go. Later on, I might even want them to have fair choices in employment, living arrangements, finances. Is that asking for too much?
Mouse pronounces the word “remember” with a “b” instead of an “r” at the beginning. Bemember.
I asked her once if she noticed her own pronunciation. She sat back thoughtfully, held up her hands and tilted her head in that exaggerated way unique to young children (something about the small arms and chubby bodies), and smiled. She said that it was on purpose because the act of remembering, or bemembering if you will, is about thinking about how you were being. In her words, it came out something like, “Well… Bemembering is for how you loosed to be.” (At the time, she also had a really hard time with words beginning with “u”. She’d always add an “l” in front. So “used to be” became “loosed to be”.)
I was entranced with the resulting stream of questions. Read the rest of this entry »
Part 2 of my ramblings are here.
What is the problem with intellectual disability?
Can’t get a job. Can’t read. Can’t talk. Can’t understand.
The notion that intellectual disability (ID) is negative seems a matter of common sense to quite a few people. It is one of the often cited reasons in commentary and articles that advocate for research with an eye towards “curing” Down syndrome. Neither side seems to refute the idea that ID is intrinsically bad. It seems to be a given. Read the rest of this entry »