If one were to try to encapsulate 2016 in a single word, and that word needed to be safe for you to use in front of children or in the workplace without getting written up by your Human Resources office, one word that might come to mind could very well be “protest”. It’s been a tumultuous year, I think that can be said without too much controversy. At the center of so much that has taken place this year, in just about every aspect of our lives writ both large and small, there has been protest. I predict that 2017’s theme might turn out to be “And you thought LAST year was made of chaos?” When it does, so much of what will likely unfold will have its roots in moments of protest from 2016, when so many of us stood up in response to a number of causes and in response to various indignities and said simply, “I can’t be silent.”
For those of us with kids with disabilities, having lived for so long with the sense that things are not how they should be and the reality that sometimes all you can do is protest, this year felt perhaps less radically different from the past than it might have to some. Our own lives of protest go back to the beginning, for most of us, or at least back to that moment when a doctor sat down with us and said, “We need to talk.” For many of us, our protest began with a glimpse at the sky, an involuntary gesture of the eyes towards a god or a universe that suddenly felt unfriendly, and untrustworthy. We’ve lived our lives in protest, some of us.
“Just because you’re a doctor doesn’t mean you can know that’s going to be her future.”
“You’re supposed to teach ALL your kids, not just the easy ones.”
“You’re our insurance company, how can you deny us something so important to our kid’s future?”
“When you use that word to insult someone’s intelligence, you’re turning my daughter into the punchline of a joke.”
“My child is a human being. She has value. She has as much value as any other person in the world.”
Protest forms special needs parents into people we would not otherwise be, and sometimes honestly never wanted to be. We become accustomed to advocacy, to stepping up when doing so makes things weird for everyone else. We learn not to care about the awkwardness, because our protest is God’s work, it’s in the service of the thing that we do that matters the most, the building of an equitable place for our children to operate. Others may care, others may love our kids and want the best for them, but no one else bears the responsibility to get things right like we do. When our kids grow up, many of them will move in various degrees towards independent life, and more important perhaps, lives that have meaning, and personal fulfillment. Our kids will require accommodations in a world that is loathe to provide them, either in services or equal opportunities or even just a social narrative in which they are allowed to be fully human. The world pushes against our disabled kids, and so for as long as we are able to do so, we protest, and we push back.
When people protest against police brutality or corporate greed or an election gone off the rails, they do so for the same simple reason. Indeed, much of our protest is joined with theirs at almost every level. “The world isn’t supposed to be this way,” they say.
We stand next to our disabled kids and we respond wearily but sympathetically, “Yeah, I get that.”
Sometimes great change happens because of protest, and sometimes it doesn’t. So many things have changed in the world since Schuyler was diagnosed, but many haven’t budged much at all, particularly on a societal level. Like anyone else, I sometimes wonder if it’s even worth it. I really do.
This year, I think I really began to understand the value of protest. It’s not in the big changes that might never come, although those are important. For me, I’ve come to see that when I stand up for Schuyler, it is for her to see most of all. When I wrote about the comedian Gary Owen and his abominable comedy bit about his “retarded” cousin and the hilarity of her having an adult romantic life, Schuyler read that, and then she asked if she could make her own video response. I think that’s when it really dawned on me.
She’s watching me. And she’s not seeing me fail, even when that’s exactly what I’m doing. She doesn’t see the futility, or maybe she does and she just doesn’t care. She sees her father standing up and telling the world that she deserves better. She’s been observing her parents in IEP meetings for a few years now, and when she watches us growing argumentative, she sees validation of her worth.
And, I realize now, she sees that she can protest, too. And that’s important, crucially so, because there’s no eloquent or powerful protest that I can make that is even nearly as effective as the ones she makes on her own behalf, and will continue to make.
That’s the value of protest for Schuyler. The knowledge that when the world isn’t the way it’s supposed to be, when HER world is wrong, she’s got the power to stand up and call it to account. Of all the things that I can show her, that might ultimately be among the more important. Compassion, justice and unwavering protest when it is required.
Many years ago, long before Schuyler was born, I did some work in family services, and I met someone for whom social work was a passion. He had a business card that I loved.
“To comfort the disturbed, and to disturb the comfortable.”
That pretty much sums up the values I hope Schuyler is carrying into the world.
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