How we talk about growth

I read lots of comments online about how children are doing making progress or doing better because they no longer need some form of assistive technology that they used to use — a wheelchair, a gait trainer, a speech-generating device, a picture schedule, and so on. And I wonder — isn’t there a different way to talk about this? Do we understand what our language is saying?

At first glance, it doesn’t seem harmful. It seems pretty factual: my child used to do this and now they do this. Listen again. It’s in the implications that we bring to our conversation. We celebrate every step closer to “normal”, that what “typical people do” becomes our yardstick for measurement. What are we saying about the children who still use AAC? Who still need picture schedules, lists, gait trainers, and AFOs? Is there some sliding scale where the less technology needed is better?

I’ve been thinking a lot about the many ways that we reinforce the culture of ABILITY! We prize neurotypical friends over friends with disabilities. We value pretending to play house over parking our cars in (beautiful) patterns and lines. We value breadth of knowledge over depth, and block our kids from special interests and passions. We demand that they conform to the way we teach, the way we live, the way we interact. We mourn their inability to engage on the playground in the ways that we did when we were growing up. We use the word progress, which almost always infers that what we left behind is less-than. Technology progress. Human rights progress. Always moving forward, always looking down on what we left. Do we want to look down on our children? Who they were, who they are, and their unique journey?

I don’t want to measure my daughter against the mainstream. Can’t we value friendship and joy and presence, all on their own, regardless of external measurements? Can’t we ask this child — or use their behaviors to understand — about their happiness, their dreams, their vision? Could they be alone on the playground and happy? Don’t some of us recharge best when we have time by ourselves? Could they learn creativity and problem-solving and engagement in those striking grids of trains and animals? Does it have to be the way we’ve always done things? And aren’t there many ways to achieve those outcomes, some involving technology and some not?

We are playing with different ways of talking. We haven’t perfected it. I am constantly becoming more aware of the ways my language insidiously supports everything I stand against. So I wonder — who is that needs to make progress? Is it our kids? Do they need to leave themselves behind? Or is it us?

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