Global Crisis

Yesterday I wrote my first piece for the Washington Post  on a bad experience we've had with Nico and inclusion. It's not a terrible experience, but I worry a lot about kids whose families don't know how to advocate for their children, or those who do but feel alone.

“Nico will get to participate as an audience member.”
With those words, the teacher explained why my son, a second-grader with Down syndrome, wouldn’t be part of the end of the year performances. These were just little informal plays that emerged from reading groups, groups in which my son was supposed to be included. But the teacher had announced these end-of-the-year events with a flier cheerfully titled, “Come One, Come All.” There were 23 names on the flier, detailing who was in each play on a given day. Nico’s name was conspicuously absent.

Yesterday, my social media world featured an outpouring of support from the disability world in particular. It was, importantly, inter-disability, in that it came from people with both physical and intellectual disabilities, from parents, from educators, from caregivers, and so on. This kind of coalition building hasn't always been the case in our community - parents ride roughshod over the ID/DD discourse. People with physical disabilities want to make it clear that being in a wheelchair doesn't mean they are developmentally delayed but are "normal." Scarce funding makes us compete.

The intersectional approach to disability, like so much else, is the only way through the mire.

When I publish in high-visibility places like Washington Post, I'm hoping to reach beyond our communities, and to provide language to people in similar situations or a quick article they can print out and share. Especially because of this paragraph (written after I describe a great party):

But for how long? How many times does an authority figure have to signal that Nico is just audience, not participant, before the kids stop seeing him as a peer? How many times do parents have to decide to exclude Nico from social functions? He has been invited to exactly zero play dates by other parents this year. He has been invited to only two birthday parties. By the time he’s in high school, will he no longer be welcome in the loving community of peers that I witnessed last weekend?

That's what worries me. Not the teacher, but the other students and Nico himself too. We can't keep sending the message that Nico doesn't belong as a full member of the community.

Note to self: Next August, write - So you've got a child with disabilities in the classroom with your typical kid. Here's how to help.