Parents of kids with disabilities have big moments, whether they represent success or hope or failure or despair. We have those defining moments, and then we have the aftermath. When viewed from a distance, I suspect most of our time is spent on that plain of aftermath, trying to take the lessons learned from those significant experiences and process them into the lives of our children. It’s in those long stretches where I think the real work lies.
I’ve certainly written (and spoken) plenty in the last week about the keynote presentation I gave with Schuyler on Monday, including most of the answers she gave. It was a huge moment for her, and for all of us who have worked so hard to help her to get a place where she can effectively self-advocate. As a parent, you wait for those experiences, the ones that turn down the volume of your anxiety for just a moment and whisper in your ear that maybe, just maybe, things might just turn out okay.
In the aftermath of that morning spent standing in front of a supportive crowd and feeling both proud and hopeful for Schuyler, the real work begins immediately. Schuyler’s summer is mostly over. She began summer band the day after our presentation (actually, she missed the first day to give our speech), and school itself begins in a couple of weeks. Self-advocacy is one thing when she’s navigating the relative ease of summer, but it’s quite another when she’s back in class with new students and new teachers and the same old presumptions, and most of all that yawning abyss between The Way Things Are and that faraway precipice called The Way Things Should And Could Be. Schuyler’s quest to truly be seen begins anew.
I’m going to level with you about something. And it’s not a small point, either. The truth is, I don’t work very hard at accurately representing every aspect of Schuyler’s disability here. I’m being confessional about this, but please don’t misconstrue that honesty as an apology. I’m pretty upfront about her speech disability, mostly because it’s fairly easy to identify if you meet her, and it’s the one aspect of her polymicrogyria that is at least straightforward to address. We can throw technology at the issue, and there’s a huge community of non-speaking peers from whom Schuyler can learn.
The piece of Schuyler’s self-described “little monster” that I don’t always talk about, and never in great detail, is her intellectual disability. That’s intentional, and furthermore it’s not likely to change. It’s an aspect of her condition that I don’t believe she understands very well, and subsequently I’m not sure she’s in a great place to grant me permission to discuss it in detail.
In theory, I don’t believe in withholding Schuyler’s agency from her. In practice, that sometimes happens, and is likely to continue to happen for a long time, maybe forever.
It’s a reality that many people don’t always grasp. Teachers and therapists see how capable she is in some aspects of her world, and they imagine that she’s going to be that inspirational person whom they are desperate to believe in, the Happy Ending that compensates for all the troubling ones they’re accustomed to seeing. There are many disabled self-advocates who have disabilities that preclude verbal speech or make it very difficult to navigate a neurotypical world but who don’t have cognitive impairments like Schuyler’s. Some of them criticize those of us who stand for our kids until they’re ready to stand on their own, perhaps without considering that we may never be entirely unneeded. There’s a kind of developmental privilege at work sometimes in the disability community, one that advances agency for people like Schuyler but without considering how complicated that can be.
Will Schuyler ever be able to represent herself entirely? Will she ever be able to drive a car or live in her own apartment or have a job? Pay her bills? Make her own medical and financial decisions? Forget blogging. Will she be able to feed herself? Will she ever have a relationship with someone who will treat her with respect and with dignity?
She might. But the truth is, that would represent a level of development that isn’t entirely consistent with where she is now. It’s something I hope for, with everything that I am, and it’s what I work for more than anything else in my life. But I’d be doing her a disservice if I made plans that relied on Schuyler’s complete agency over her life.
It’s tricky, and for people like Schuyler, it’s compounded by the fact that so much of her disability is invisible. When she stands in front of a crowd in her pretty dress and her bright red hair, the product of choices she’s made for her appearance, and when she speaks sentences to that crowd, sentences that she has worked over for weeks to get just the way she wants them, Schuyler presents a very put-together person.
I don’t think that’s a misrepresentation of her abilities. I didn’t improvise my speech on the fly, after all, and I didn’t show up in my pajamas. But her presentation didn’t tell her whole story. The way I present her to the world doesn’t tell it, either. I don’t intend for it to, because I don’t know her story, not enough to make it my own. I can tell my own story as I stand beside her. That’s going to have to be enough, at least until, and if, she’s ready to tell it herself. Ready, and able. There are no guarantees.
Schuyler is complicated, and as we move forward from the aftermath of her speech and start to put more possibilities in front of her, we navigate what’s possible and what’s not. We navigate, and we negotiate with her monster, and again, there are no guarantees.
More than anyone else I know or have ever known, Schuyler possesses grace. It touches us all. The one thing that I can say for certain is that it’s nearly impossible to meet Schuyler and to know her without being fundamentally changed. She has limitations, that is very true, and they are almost certainly more challenging than most people truly understand. But the limitations that hold her back the most are ours, I think. Our inability to grasp the world as she understands it, and our failure to make that world a better place for her. But God, how we are all trying. I’ll be trying to do that until my very last living breath.
As I was writing just now, Schuyler came in to kiss me goodnight. She asked what I was writing about, and I told her I was talking about her polymicrogyria and how it affects her life. (I’d told her already, but her memory can be unreliable at times. It’s a concerning attribute of her little monster that seems to have grown sharper claws in recent years.) I asked her what she thought were the hardest parts about having polymicrogyria.
“I can’t talk, and I can’t understand things sometimes,” she said. She continued in a quiet voice, “I want to talk, but that’s not going to happen, is it?”
“No, probably not,” I said, as I’ve said when we’ve had this conversation before, seemingly a hundred times before, as far back as I can remember. “But, you’ve got…”
“I’ve got my iPad,” she finished with a little smile, because she’s been in this conversation before, too.
And that was that. A hug and a kiss, and she was gone.
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