"Inspiration" can be something of a dirty word in the disability community, and I think that's probably appropriate much of the time. The popular term is "inspiration porn" – and we've all seen it: Photos of disabled kids accomplishing ordinary tasks in defiance of their impairment, often with a quote for those of us who aren't disabled, perhaps shaming us to stop our whining. We’ve all seen stories on the news of plucky kids overcoming the obstacles, or just as often, of their friends and families saving the day with acts of charity or simple kindness.
I suppose the goal is to put our lives and our challenges into some kind of perspective, but to me, it also feels a little like I'm supposed to tell myself, "Things could always be worse. I could always be THAT person."
You can see why that might be problematic.
For me, the idea of being inspired by my daughter is more complicated. There's a great deal that Schuyler brings to the table. For her, it's all about how she moves through the world on her own terms, and what that actually means. For Schuyler, it means being awash in a world of complex communication, trying to make herself heard with a voice that can be hard to understand or via technology that requires a great deal of patience and a slower pace of conversation from those around her.
It also means trying to follow concepts that may challenge her more than those around her, and working hard to make sense of a reality that frankly confuses her much of the time. Schuyler doesn't want to occupy a world apart, and as much as I might want to give her the option of living a kind of Life Lite, we push her to find a way in a universe for which she is often ill-prepared.
It's daunting for her, and she is often overwhelmed, but you'd never know it from her attitude, or her fortitude in moving forward. In the 13 years that Schuyler has been in my life, and particularly in the years since she was diagnosed, Schuyler has shone a light back at those of us who would take care of her and help carve her own path. She doesn't mean to shine that light, and I certainly don't believe that she was placed on this earth to make the rest of us better people somehow. That's the worst kind of inspiration porn there is.
But there are many who believe that in our lives, we meet the people we're meant to know, and if we're open to those people, we end up growing, much as they hopefully do from knowing us. That's an idea I can get behind a little more easily, but if that's the case, I can say without hesitation that in the spiritual exchange between Schuyler and myself, I have been the clear winner. I've been the one who has grown the most, and continue to grow because of her. Is that a kind of inspiration? I suppose it might be.
What I can say for certain is that I'm not the man I once was. I'm certainly not a good person, I wouldn't say. I'm hardly a great husband or a wise provider for my family. Before Schuyler required me to open my heart and embrace a kind of empathy that I'd never known, I was a deeply flawed and selfish person – as I am today. But I used to be worse, often shockingly so.
One of the reasons that I speak out so enthusiastically against use of the so-called "R Word" is that it wasn't to long ago that I was something of a serial offender myself. Perhaps I'm driven now by the zeal of the convert. Maybe it's guilt. Well, it's definitely guilt. Perhaps it's a kind of penance that I can never fully pay, not just to Schuyler but to the countless whom I encountered before her, many of whom whom I no doubt offended and hurt over the years.
I think that any growth on my part must be because of Schuyler, because of her own giant trusting heart and her fierce, unconditional love for me, a love that I am desperate not to win, because I have it already and always have, but rather to deserve. Schuyler gets up every day and she moves into the universe like a storm front, and her success or her failure on any given day is almost beside the point. She perseveres because it's what she has to do to be in the world. And so I try to put myself together as a kinder and more humane person. A better person. The father she deserves.
I've got a lot of work to do, and frankly, I'm running out of time. That's hard to think about sometimes, knowing as I do how far I really am from becoming the person I would be proud of being. In the 2004 remake of The Alamo, the day before the final battle, Jim Bowie tells his arch rival, William Travis, that if he were to live a little longer, he might just become a great man. Knowing that they are marked to die in the coming battle, Travis replies with words that could very well be my own.
"I think I will probably have to settle for what I am now."