posted Thursday November 12th, 2015
Today’s one of those days where I wouldn’t mind having a good cry.
Not a burst-int0-tears-at-the-drop-of-a-hat cry, but the kind you schedule, like Holly Hunter’s character in Broadcast News — where she sits on the bed in the hotel room, unplugs the phone, takes a deep breath and lets it rip.
It started this morning when I stumbled on the fact that not only do the gifted kids at Sophie’s school get to take drama, they also have a journalism elective.
I guess that makes sense, I chuckled to myself. Given the state of my chosen profession it will take only the best and brightest to get us out of this mess.
No journalism for Sophie, or the rest of what I call the “general population,” the kids who didn’t test into the gifted school-inside-a-school. All the kids on campus — gifted or not — can take choir, band, visual art, home economics, computers, Spanish and P.E. But other electives, like drama, sustainability and journalism, are “project based” and reserved for the gifted kids who passed a special test.
Sophie really wants to take drama. And, now that it’s come up, journalism.
“I’m going to talk to the [principal of the gifted school] about it again today,” she told me in the car this morning.
“Oh no, please don’t. You’ve already –” I began. Then I stopped. “You know what, Sophie?” I said. “Say whatever you want.”
Maybe Sophie knows best. I’m beyond knowing what to do. Last week, she made the junior varsity cheer squad. I found myself wondering whether she would have been chosen if there’d been a way to mask the fact that she had Down syndrome from the decision-makers — if her loud voice, memorized cheers, coordination, ballet-inspired grace, high kicks and ability to do the splits would have gotten her in. Her merits, with no qualifications. I’ll never know. The skids were greased. And not in a bad way, necessarily, certainly with the best intentions. But they were greased.
Now the question is, where else to get slick? And that is what has me wanting to cry, because I don’t know the answer. Am I pushing too hard, or not hard enough? What is Sophie capable of? What does she need? When do all the requests for equality get obnoxious? Where is the fucking instruction manual?
After weeks of pleasant conversations at the district level, I’ve made no progress beyond the promise that maybe someone will sponsor a drama club again this year for all the kids at Sophie’s school. It doesn’t appear that anyone’s willing to budge on the question of fairness — explaining why the gifted kids get more options than the non-gifted ones. If a gifted kid can take Home Ec, why can’t Sophie take Drama?
And so I’ll take it up the ladder, hoping the conversations will stay pleasant, but knowing that’s not likely if I have a hope of achieving anything. (And by achieving anything I’m not referring to just Sophie — this is unfair to the hundreds of typical kids who also attend that school and have limited options for electives.)
It doesn’t end there.
Sophie’s been asking for a while why other kids at her school are going on an out-of-town trip to tour colleges. I mentioned it to a couple of staff at the school, who decided Sophie should apply to the program, which is designed for college-bound kids. (Which is sort of depressing — why aren’t all, or at least most kids considered college-bound in middle school?) So now I have another form to fill out. I don’t mind the paperwork, but I’m worried about the implications.
Every week, it seems, a new college program for people with developmental disabilities pops up. So yes, Sophie will be able to “attend college” in some form. But will it look anything like that out-of-town college tour? Hard to say. Am I just setting her up, showing her what will never be hers?
It reminds me of the conversation I had with her ballet teacher (who happens to be my mom) when I pressed on the issue of whether Sophie would ever be able to dance on pointe. My mom emailed back with a detailed explanation of the physical reasons it would be dangerous, and concluded, “Sure you could put her in a pointe shoe with lots of gel and stand her at the barre but it would be wrong in every way, especially that it would give Sophie hope that’s not realistic.”
For me, that ended the pointe shoe chapter decisively. I still look at pictures of friends’ daughters getting fitted for their pointe shoes with a little sadness, but both Sophie and I have moved on. (At least, she hasn’t mentioned it lately.)
But drama class, journalism class, the dream of attending an awesome college — those are not physical like pointe shoes, they are tougher pages. I’ll need Sophie’s help to turn them.
As I was sitting down to write, a friend posted this on Facebook:
“If disability awareness does not lead to inclusion and full integration and parity, then it is little more than tokenism.”
She’s right. Some days I think that if I see one more television news story about a young person with Down syndrome being elected homecoming king or queen, I’ll scream. I like the fact that people with Down syndrome are modeling, bring awareness and diversity to the runway, but I can’t help but think, “Really? That’s the best we can do?” And I’ll always be conflicted when it comes to cheerleading, no matter how much Sophie loves it.
But none of this is as simple as a status update. Putting Sophie on the cheer squad isn’t enough, I know that. So just what is enough? What does integration and full inclusion and parity look like? Where do we compromise and where do we refuse to stand down?
I don’t fucking know, and that’s the part that has me frustrated.
But I put on mascara this morning. So I’ll have to schedule that cry for another day.