By Lisa Miller
New York Magazine
How smart do you have to be to be a parent? Sara Gordon didn’t walk until she was 18 months old. She didn’t talk until she was 4. Potty-training was a years-long challenge: Kim (Sara’s mother) can’t count the number of times she was called to Sara’s preschool classroom because Sara had had “an accident” — a mess no teacher wanted to touch. Now 22, she dresses herself and can keep herself clean; she can cook spaghetti and slice a cucumber and do her own laundry and scan a document, and though she does not drive, she can get herself, on foot or by bike, to meet her grandfather for a free church dinner on Mondays, Wednesdays, and Thursdays. She is learning to take the bus. According to an assessment done in the fall of 2014, Sara’s functioning is “borderline.” She has trouble keeping track of details — she may get “sidetracked,” as her father puts it, on the way to the store — and with processing and communicating complex ideas. She needs help interpreting the dosage instructions on the back of a medicine bottle, and she doesn’t know how big a teaspoon is. Her mother keeps track of her money.
The most concrete assessments of Sara’s abilities, of course, were made in school — an environment she loathed. It was an immersion experience in being judged and failing to live up to someone else’s standards. Sara always had an IEP (individualized education plan) that detailed the extent of her disability, assessed her learning style, and entitled her to special-education services. But under constant scrutiny, Sara developed a hypersensitivity to being underestimated — and an “irritation” (her word) toward anyone who presumed her incompetence. She told me — twice — about an English teacher who suggested she opt out of taking the Massachusetts state exam that high-school students have to pass to graduate. “I said to her, ‘You don’t think you have confidence in me, but I’m going to show you wrong.’ ” Sara did pass the English portion of the test, but not the science or the math, and received a “certificate” for having finished four years of high school, but no diploma.
But the frustrations had begun much earlier. In pre-K, she couldn’t sit still at circle time; in first grade, she was sent to a speech pathologist. She had few friends. Confronted with her own limitations and the impatience of her teachers, Sara would wind up affronted and angry. “Like, there would be a floor puzzle and I would do it the way I know how to do it and they would be like, ‘No, no, no, you’re doing it wrong. You have to do it this way.’ And I would be like, ‘I’m doing it. Why does it matter?’ ” Sara remembers. “And then they would show me and I would get irritated — I would get so mad at them. Eventually, I would end up in a corner — ”
“Which I thought was wrong,” adds her mother, in her wide New England accent. “Don’t put my daughter in the corner because you can’t — ”
“Because you don’t have the patience to sit down and try to …” Here Sara trails off.
However infuriating Sara and her mother found school, this educational setting represented an enormous leap forward for kids with intellectual disabilities. Until 1975, when Congress passed a law requiring all school districts to deliver “a free appropriate” public education to disabled kids, most children like Sara wouldn’t have gone to public school at all. They might have been kept at home and hidden away, or their parents might have been persuaded, for the sake of the other children, to send their disabled offspring to institutions where they were sometimes shackled, beaten, or starved — treated, in other words, as if they were not quite human. (In 1967, 200,000 Americans lived in these facilities against their will.)
Picture: Kelovy (Own work) [Public domain], via Wikimedia Commons