Schuyler and the Big Questions

Every day, in ways both incremental and dramatic, I’m watching Schuyler grow into her own.

Last week, I spoke to a local chapter of an international philanthropic women’s organization. I talked about my book and assistive technology and disability rights, but most of all about Schuyler. She’s at the core of what I most often have to say, as she lives at the center of who I am and what I know and understand about the world around me.

I was asked to give this presentation by one of the organization’s members, someone I’ve been friends with since I was a student in college. I don’t think I’m selling myself short to say that back then, neither of us would have foreseen a future in which I was speaking and signing books and being fancy, let alone being capable of successfully raising an amazing daughter like Schuyler. I’m not sure I would have put money on even keeping a kid alive for fifteen years. We step up and we find our capabilities, I guess. Sometimes the best we can ask for is that our mistakes not be of an irreparable nature, and that we learn from them.

Schuyler was in attendance, as she is mostly these days when I speak. It’s been about a year since I last spoke without her being present, due to the all-important state STAAR testing that no one is allowed to ever miss, ever. I decided after that conference that I don’t want to do appearances without Schuyler any more, not if she wants to go, and she always wants to go. I’d been feeling weird about it for a while, and last year was finally too much. My presentations feel hollow to me without her there to advocate for herself and fill in the spaces that my inadequate storytelling leave blank. More than that, though, she deserves to hear what I have to say about her, and to disagree and speak for herself when necessary.

When I spoke last week, I knew I was appearing before a group that had a lot of deeply religious members. I learned a long time ago that when speaking to groups like this, it doesn’t do any good to pull punches or whitewash where my own spirituality is concerned. When I wrote my book, I touched on the topic of God more than I think anyone who knows me expected. My agnosticism is of a variety that leaves plenty of space for God, and which would like some answers to some vexing questions about kids like Schuyler and the hard world they live in.

When speaking to groups where I know there are going to be a lot of people of faith present, I still talk about God. I talk about Faith and God and my own broken spirituality and what kids like Schuyler may be able to teach us about such things. I kick open the door to a conversation that isn’t about convincing anyone or being convinced, either, but rather an exploration of perspectives that might just bring us all a little closer together. I’m not religious, and I’m certainly no Christian, but I don’t need to be snotty about it and assume that believers won’t listen to me or treat me with respect. I like those conversations. I try to draw them out with my speeches when it’s appropriate.

Schuyler has heard me speak a number of times about God and Faith and my own fall after her diagnosis, but for some reason, this time it caught her attention. After my presentation, as we were having questions and answers, Schuyler tugged on my sleeve and indicated that she had something she wanted to say.

“I have a question for everyone,” she said, her electronic voice amplified by her little speaker with the big sound.

She typed away on her iPad as we all waited expectedly. I mouthed to the group that I had no idea where this was going.

“Do you all believe in something?” she asked. There was a general agreement that most everyone held a belief in something.

“Like what?” she asked.

There was that soft audience murmur and a few people gave different answers, all of which were well-thought out and seemed to satisfy Schuyler. She went to a phrase that she’d carefully programmed into her device a few months ago, after a long conversation we’d had about Faith.

“I am a theist,” she said. “I believe in God but I don’t believe in religion.”

I confess, I was a little nervous. I knew that was a pretty conservative Christian crowd. But that’s the thing. Schuyler put herself out there, she expressed her beliefs clearly and respectfully (and with a crisp British accent, which probably doesn’t hurt her credibility), and people responded to her with respect. The conversation she sparked was a good one, and no one told her she was wrong. I think she was pleased with the outcome.

It would be easy to say that she was brave to lay it all out on the table like that, but I’m not sure she understands the risk she’s taking when she speaks with such candor. Perhaps she’s right; maybe it’s not really a big risk after all. She doesn’t get pressured to embrace religion very often, and when she does, she tends to blow it off or respond creatively.

Last year, one of her classmates told her she couldn’t celebrate Easter because she’s not a Christian. She responded by asking us if she could make up her own holiday to take place at the same time so she and anyone else like her could have a holiday with everyone else. Thus was Monster Day born. I loved her explanation, which she reposted on Facebook this year.

Dear friends from Facebook,

Your truly,
Schuyler R.H.

I love that last part especially. “Monster’s Day is for EVERYBODY!!” Schuyler does inclusion better than the rest of us, I think. She also understood long before I ever did that people can talk about things they don’t agree about without hurting or demeaning each other, and that respectful diversity of belief adds strength to relationships, not weakness.

For someone who’s supposed to have an intellectual disability, Schuyler can be a lot smarter about some things than anyone around her, myself most of all. As she continues to find her voice, she’s also discovering that she’s not afraid to use it.