December 16, 2016

The Value of Protest

Today at Support for Special Needs:
Excerpt:  
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.

December 1, 2016

The evolution of the dad hat

Today at Support for Special Needs:
Excerpt: 
The world of a teenaged girl with a disability is complex, in ways that aren't cute or sitcom-ready. We've discussed many times how dangerous the world is for women with disabilities, and how vulnerable they are to sexual abuse and assault. It's terrifying as a father; it's more terrifying for a young woman with a disability, and Schuyler is old enough to understand what's going on now, and what's at stake. Ten years ago, she was worried about werewolves. That's not what's waiting for her now, though.

November 23, 2016

Thanksgiving 2016

Today at Support for Special Needs:
Excerpt: 
Through it all, Schuyler doesn't spend a lot of time reflecting on the hard stuff, certainly much less than her moping, sad-sack father does. She sees a world that she doesn't entirely understand, and she grabs at it, claws at it for the riches it hides from her. She adores her friends, even when their behavior baffles her. She trusts in people, right up to the moment they let her down, and then a bit more after that. Schuyler loves her family, and that includes her godparents and the people she has made a family space for in her heart, with a depth and unashamed loudness that I've literally never witnessed in another human being ever. I'm not objective in my admiration of Schuyler, but I'm lucky enough that I simply don't have to be. I have the honor of being the father of the most amazing person I've ever known, and I might forget to be thankful for all the other stuff, but never ever that.

November 17, 2016

The next day, and the next

Today at Support for Special Needs:
Excerpt: 
But the days roll past, and the Big Scary Thing becomes more and more background as the Many Small Monsters continue their work. We don't make peace with it, because when we close our eyes, it's always there. ("Ah, I can't remember!" cue laughter...) But we push it back as best we can, because the life he's mocking is a hard life, and it's hard and time consuming no matter who's the president. Our monsters aren't all that concerned with politics. Our devils don't vote.

November 9, 2016

The New Danger of Difference

Today at Support for Special Needs:
Excerpt: 
When Schuyler gets up tomorrow and faces her weary and deeply disheartened father, she will be told that what's wrong with America isn't those like her who are different, or who insist on their humanity without limitations. What's wrong with America doesn't belong to her.