This week, I’m going be writing about adults with disabilities, especially (of course) Down syndrome. A number of stories have been circulating lately and I have thoughts!
I think I was onto something yesterday when I wrote that Ethan Saylor doesn’t fit the media narrative, and that’s part of why his story hasn’t “caught” in the national media the way that other stories of police abuse do. It’s not clear how to write about a 26-year-old, 300 lb, swearing, man with Down syndrome who wants to see “Zero Dark Thirty” again. Now if it was Muppets on Ice, that would make sense. We often see adults with disabilities as perpetual children, which makes it hard to process things like enjoying violent movies or their sex drives. And it’s a fair thing – because I am DEEPLY uncomfortable with the idea of a 26-year-old with Down syndrome seeing Zero Dark Thirty (let alone, say, pornography). I think yesterday I responded a little defensively, because I know that reaction is both wrong and right. Lots of adults with DS in their 20s might have trouble distinguishing between fiction and reality, especially for a film like that (filmed to be realistic) – how do you decide when they are ready?
But our children do not stay children. They grow up. The world gets more complex the minute our children pass out of school age, but lots of people are working on this situation, some better than others. So this week I’m going to write about David Effgen, an Oak Park resident who died recently, and his son Andrew. I’m going to write about Jenny Hatch. I’m going to write about Goodwill. And I’m going to write about Nico and Ellie.
But not right now, because none of my children are wearing pants yet, and it’s almost 9:30.