When my son was first diagnosed, I was handed a stack of white, legal-sized envelopes with the headings of clinics he would need to consult within the first weeks of life. Most of the departments I didn’t even know existed, let alone know how to pronounce.
In his first year, we ran around from one appointment to another—parents completely unprepared and entirely unsupported.
Genetics was the most terrifying.
Genetics is one area of science that frames a diagnosis as all the things that are biologically wrong with a human being.
We were two impressionable parents given a grim outlook on our baby’s life based on DNA and chromosomes and all the things that were “abnormal” about them.
We were never given resources nor connections to other families. Just a medical run-down of all the things our son would not do, and then a report with all of it stamped in black and white.
While it’s important to know about a person’s genetic make-up, it’s not everything.
The medical system does a great job of breaking down a person’s wholeness into individual, unrelated, seemingly broken parts. It does a great job of letting us know what needs to be “fixed” in a way that shames a person from existing at all.
Parents and educational/clinical professionals have unwittingly been indoctrinated into this same medical model of disability. We spend an awful lot of time remediating all the things kids are getting wrong and not enough time building their strengths.
Human beings have been classified into the standards of “normal” versus “not normal” for two centuries.
What is normal, anyway?
According to Jonathan Mooney, author of Normal Sucks: How to Live, Learn, and Thrive, Outside the Lines the answer is simplistic, but transformative: normal does not exist.
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