Every few years, Penny goes through a series of tests to determine the extent of her disability and, therefore, what services she is eligible to receive. I am tasked with reporting on her daily life, and every time, I am struck by how broken our system is when it comes to understanding disability.
As I click through the questions, I notice all the things Penny can do: cook a meal with three ingredients for herself, button large buttons and zip zippers and wash her hair and hang up her towel and use social interaction technology and find a date on a calendar.
My chest pings with the reminder that some families face hardships we have never known. I click through the things she never does: hears voices or fixates on one part of an object or screams or harms herself.
I notice the things she doesn’t or can’t do: button small buttons and lock up when we leave the house and start small talk.
And then there are the questions where the answer is also “never.” I feel the ache with prompts like “goes to a park or a mall with someone her age without someone supervising.” “Gets together with two or more people her age at someone else’s house.” These questions remind me that her “disability” does not only come from her body or her mind but from our society.
Disability and Standardized Testing
These tests give us a sense of the baseline of support Penny needs. They help us identify areas where she could learn and grow in meaningful ways.
They also isolate the person with a disability as the problem to be addressed rather than seeing the system as the locus of change. They rank and measure and evaluate as if human beings can be reduced to numbers on a graph, as if they are problems to be fixed.
I’m exceedingly grateful for the people who are supporting Penny’s growth as a human, and these evaluations are all designed to give them information toward that support. But all of us lose out a little bit when we try to measure a life through data. None of us will ever be captured in our wholeness through a standardized test.
More with Amy Julia:
- Education: Penny’s PATH Resources
- Book: A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny
- Free Resource: Missing Out on Beautiful: Growing Up With a Child With Down Syndrome
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