David Perry has again written something absolutely fabulous, about how our social systems require us to think of, quantify, and characterize disabled children in order to get support. Over the past few nights, I’ve been slowly working through the Vineland-3 Adaptive Behavior Scale, which is required for us to push back against the way the local public school has cut our son’s supports and services. It’s emotionally draining, and largely for the reason Perry notes: getting services often requires us to reopen “the wound of seeing our child described solely in terms of deficits in official paperwork.”
Every question on these forms is not only infuriating, as I’ve talked about before, but also forces me to focus only on the deficits and difficulties in order to get his support. It requires a certain frame that fundamentally misrepresents who our son is and what his value consists in. And Perry’s essay gives words to what’s wrong with frame:
Someone at a local nonprofit advised us to create a spreadsheet that detailed every minute of every day that we had to do something for him that we might not have to do for a typical kid. I tried for 15 minutes, characterizing difference as struggle, then deleted the spreadsheet. I didn’t like the way it was making me look at my son. I went to a mandatory training from the county at a local library, where a well-intentioned employee advised us to describe our “child’s worst day” in our application. We gritted our teeth. We argued for “severe” instead of “mild.” We dehumanized our son in the paperwork but got support.David Perry, “I Shouldn’t Have to Dehumanize My Son to Get Him Support”
The system that aims to help reinforces a hierarchy that devalues by its very structure.
I hate the Vineland-3 Adaptive Behavior Scale. I hate the system that makes me play this game.