Expectations

As the title suggests, a theme is emerging in my thinking these days.

I watched the movie Temple Grandin this week, the HBO film based on the books Temple Grandin has written about her life experiences.  Temple Grandin,as most of the readers of this blog probably know, is a woman with autism who's a professor at Colorado State University and has revolutionized the way that livestock are treated in the United States.  She's also revolutionized the way that autism is viewed and treated.

We're in such new terrain with a lot of cognitive and developmental disabilities.  We're only just emerging from a world where the reaction to these sorts of disabilities was institutionalization.  Grandin's doctor urged her family to institutionalize her when she was a child, but they didn't.  Families like hers are "saints and sages," as another writer says, bucking the medical establishment and treating their children like people in the world.  Folks with autism weren't considered people in the world a few decades ago, and so it was a big surprise to lots of people when Grandin demonstrated that she was, in fact, a person--in her case, a person who could communicate her perspective on the world, and who could see the needs and habits of livestock far more clearly than folks before her had done.

Okay, my point here is this:  back in 2002, when McDonald's started using Grandin's techniques with their livestock, there was a report on her on NPR.  I remember hearing this report, including an interview with Grandin about how different her livestock handling systems were, and how effective they were at respecting animals' peace and quality of life up until the moment of their death.  After the interview, the NPR reporters (perhaps it was just the local crew, because this info isn't on the web broadcast) were careful to make a point that I remember now, a decade later:

One of the issues surrounding Grandin is that parents of kids with autism are seeing her as a potential role model for their kids, and doctors want to be sure that folks recognize that Grandin is an exception to the rule.  Parents of kids with autism can't and shouldn't expect their kids to do what Grandin has done.*

At the time that this piece aired, disabilities in general weren't on my radar.  And yet this was a big enough point that I remembered it.  And as I watched the movie Temple Grandin, this point came back to me.

When I heard the NPR piece, I thought, "Wow, what a shame that these poor parents are so deluded."  Now I'm able to recognize that the correct response is, How dare they say that!  How dare NPR tell folks listening to Grandin's amazing story that she's an exception.  Don't get the crazy idea, parents, that your kid with autism might actually be a full person in the world!  Your kid is probably way too fucked up to be helped, so don't get big ideas.

A related point:  you'll remember the great experience I had a few weeks back at the Downs Ed conference in Atlanta.  Downs Ed is a big advocate of kids with Down syndrome being taught to read.  The visual learning skills of people with Down syndrome are generally much stronger than their auditory learning skills, and so reading is something that's often possible and a helpful tool.  Due to this research, and the urging of one friend in particular, we've been working on helping Maybelle to read for a long time--maybe a year?  In the last week or so, it's started to click for her.  She can now read probably 10 words, and since she seems to have gotten the concept, she's learning new ones faster and faster.

I'm doing loads of videos of her reading.  Here's one from tonight (be warned that there are some graphic toast-eating moments throughout the video):

At the Downs Ed conference, they showed us videos of kids they work with, many of whom go to public school and are labeled "exceptional readers" within their fully inclusive classrooms.  They're certainly considered "exceptional" for kids with Down syndrome.  The point the presenters were quick to make was this:

Exceptional readers are becoming less exceptional as we train kids with Down syndrome more effectively.

The kids they work with aren't "exceptional" kids.  They're just kids in the world, being offered high expectations and the support to reach them.  They also had this to say:

Changing how we treat kids with Down syndrome changes the profile.  There is no reason that any kid with Down syndrome is locked into any "profile."

If the widespread belief--and the official "profile"--is that kids with Down syndrome can't read, then you simply might not try to teach your kid to read.  If you're being told by The Powers That Be that there's no way in the world your child could end up like Temple Grandin, you might well underestimate your child and not offer your child opportunities, support, hope, and the space to grow.  But as we change our expectations and our behaviors, the profile will change, and it makes it easier for people to become the fullest version of who they are.

Okay, that's all I've got for tonight.

*Note that the indented statements in this post aren't quotes--just my own paraphrases.