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The Things We Do Not Say

photo[1]I’ve been writing about Schuyler and her disability for over ten years now, which feels like both a long time and also just a moment, a flicker. I was writing back when we called them “online journals”, I later started a blog and wrote a book, and eventually ended up giving speeches to people with disabilities and professionals and other parents and families, always speaking simply as a father. In that decade, I’ve watched changes take place in the realm of advocacy. Some of them were good; some were simply changes.

For parent advocates, there are rules now, I am told, for the things that we can and cannot say. Break those rules, and we are dehumanizing the very people we profess to love. Say the things we are not supposed to say now, and we are causing harm. Express the things we are told not to say, and we demonstrate that our love for our kids isn’t real.

I once wrote that acceptance wasn’t something I was interested in, that acceptance of Schuyler’s disability felt like surrender, like giving up before it was time. In my book, I said it like this:

We’d learned to be on our own, navigating a new world of Schuyler’s disability, and with little information and no road map. We learned that for parents like us in the situation we were in, all you can do sometimes is trust in your fool’s hope and keep going. You never give up, and you persevere, not because you’re plucky or heroic or even smart, but rather because you hate the thought that there might have been some answer or solution waiting right around the next corner, and you would miss it if you gave up too early. It’s hope, and it’s stubborn and sometimes it’s even stupid, but it’s the thing you’ve got so you run with it. You go into battle against the monster with a rubber sword because, really, what else are you going to do? 

Now it’s a thing you do not say. You do not fight your child’s disability because now that means you are fighting your child. There are no monsters, there are just children and their differences. I have even been told, on a number of occasions, that fighting for Schuyler’s right to communicate using assistive technology was wrong. Accepting Schuyler and truly loving her means allowing her to communicate with her natural voice, as best as she can. (To be fair, I don’t think this represents the position of very many advocates.)

If we don’t accept things the way we are, we’re rejecting our children. It’s a simple position, no greys, just a black and a white.

When we hear the seemingly inevitable stories of parents of kids with disabilities who hurt or even kill those children, the same discussions begin anew. Members of the media, and some parents as well, begin to ask questions. Why did this happen? Why did these parents lose hope with such overwhelming finality? What could have been done to help them, to stop them from reaching the point where they even consider committing such a monstrous act?

But these are things we cannot say. To ask those questions is to devalue the victims, to make the subtle suggestion that somehow, such an act can be justified when we start looking for causes beyond pure evil. I’ve been watching this particular scenario play out over a number of years, and while I’m not supposed to talk about it, I do think about it. I wonder if things might have been different if we’d had a different conversation a few years ago, if we’d looked for broken parents instead of vampires, if we’d sought change and relief instead of retribution and justice. And I wonder about those kids for whom the same fate might be waiting years hence. Can we help them now? Or is this a cycle that we are doomed to repeat, but not talk about, because we’re not supposed to talk about it.

In the past, I’ve also written about a process of grieving that many parents go through when given their child’s diagnosis. We learn to let go of the children we imagined in the future, the ones whose daily lives look a lot like the ones we lived in our youth. Perhaps we do this because we are bereft of imagination, or because we are endowed with more imagination than is good for us. We let go, and we grieve, and then we set our sights on this new future, the one we are committed to with all that we are, even if we don’t understand it. (And how could we?)

I am told now that this is something we do not say, either. Admitting this is to say that we would rather have another child, that we don’t value our kids unless they are unimpaired, that if we could choose, we would take that child from our imagination over the one we have.

Schuyler is now thirteen, and there are two things I will say, whether or not I’m supposed to. (You can issue me a citation if you like.) The first thing I need to say is that I wouldn’t trade Schuyler for any child in the world, real or imagined. I wouldn’t choose not to be her father, and I would do anything for her, anything at all. My life is hers, it is forfeit to her needs and it is in the service of her happiness.

The second thing I have to say is that if I were given the choice, the opportunity to give her a life without her disability, starting fresh today? If I could take her monster away and send it to the bottom of the sea or the heart of the sun, or to some distant monster zoo on the other side of the world? I would do so in an instant. I would repeat the prayer I offered the night Schuyler was diagnosed, directed at God (although in retrospect, it feels more like a Devil’s deal), to take her broken brain and make it clean and clear, at the expense of my own. I’d sign on the line before the paper hit the table.

Is that wrong, to want to take away something so central to Schuyler’s person, simply to give her the chance to live a life that I see as being potentially better than the one she has now? Is that arrogant? Does it diminish her? Perhaps. I’d say you have an excellent case for it being wrong. Maybe that’s why I’m not supposed to say it.

Here’s the thing, though. Last week, as I left the eighth grade football game where Schuyler had cheered for the first time, I found Schuyler standing with members of her cheerleading squad. They were all talking and laughing, but Schuyler stood apart. When she saw me, she said goodbye to her friends and caught up with me.

“Daddy-O?” she said. I looked down at her. “I wish I could talk like that.”

I asked her what she meant, although I thought I knew. She didn’t just mean talk with her natural voice, although that was part of it. She mimed with her hands, making fast-talking little ostriches, looking and jabbering quickly at each other.

“Do you mean you wish you could talk fast like they do?” I asked. She nodded.

“My iPad is too slow,” she said. “I want to talk like that.”

I’m not supposed to grieve for the version of Schuyler who could have had that life, who could have stood in a circle of her peers and kept up with their chatter, and who could have understood all of it, too. It’s hard to know how much Schuyler understands about her intellectual disability, but I’m pretty sure she’s noticed.

Schuyler grieves for that person she could have been, too. She lives the life she’s been given, and she lives it fiercely and with a lot of joy. But given the chance to release her monster into the wild, never to see it again, I have no doubt in my mind what she would choose to do.

One day, I hope she’ll choose to talk about it. I hope the world will be in the mood to listen.

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