[“I looked. I looked everywhere. Information about Down syndrome was surprisingly hard to find at Harvard, but I read what I could find with desperate intensity. Later, when the people around me had time to marshal better resources, I would learn a few not-so-awful things about my son’s condition. But those first few days, I swallowed thousands of appalling bits of information from insensitive and outdated sources. I swallowed them without even chewing. I have seen the same sort of craving for information in people who have lost loved ones to illness or injury. They rivet all their attention on the postmortem analysis or the police report or the black box, clinging to the facts of the case as though understanding the cause of death will soften its horrible finality. As far as I can tell, this never really works. When all the data are in, when the case is closed and sealed, the dead are still dead.
(…) The little mustard-yellow book I’d bought at the Coop was the worst. It had last been updated in about 1950, when people with Down syndrome were rarely seen outside of institutions. I understand now, and I want to state for the record, that putting a person with Down’s into an institution is like forcing an otter to live in a Pringles can. There is nothing wrong with the social adaptability of people like Adam. They are as gregarious as any “normal” person, more so than many, and thrive on loving interaction. They also learn social skills as quickly as any child, given normal treatment. It makes me sick to think of the thousands of children who were raised in institutions before the last couple of decades. Isolated, bored, and aching with loneliness, many literally turned their faces to the wall and died by the time they were in their teens or early twenties. The mustard book described this as the normal life course for the human beings it called “mongoloid idiots.”
Oh, that book was full of tasty treats for the parent of a child with Down’s. I’ve met hundreds of parents whose decisions about their children’s lives were made on the basis of such incredible misinformation. My book declared grandly that the birth of a Down syndrome child generally destroyed the mother’s mental health, as well as the life of any older sisters that might be in the family (brothers, it said, were exempt, since they were not expected to fill a caretaking role). It gave absolutely false information about the inability of such children to control their bodily functions, and their antisocial inclinations. It listed the typical IQ for “mongoloids” as about 35, and by way of comparison, mentioned that the IQ of a chimpanzee is about 50 and that of the average oak tree is 3. (I don’t know how you’d test the IQ of an oak tree, but apparently the authors of this particular book got one to answer at least a few questions.) It was impossible for me to keep myself from calculating that this meant my son’s IQ would be about 130 points below the average of my oft tested siblings, and only 32 points higher than the plants in Harvard Yard.
A year later, when we had moved to Utah and I was doing research for my dissertation, I ran across that mustard-yellow book in a box of reference materials. By that time, Adam was an adventurous, affectionate little boy who loved to draw, tickle his sister, and explore all our floor-level kitchen cabinets. I had learned a great deal about the fear and misjudgment that had been leveled at people with Down syndrome for so many years. Just a glance at that book yanked me abruptly back to the days after Adam’s diagnosis, when I hadn’t learned any of these things, when I’d forced myself to read and accept claims that were both untrue and brutally unkind. Before I was aware of having moved, I slammed that book across the room so hard that pages flew like feathers when it hit the wall. I chased it down, grabbed it, and tore it straight across and then down the middle, with the same kind of fevered strength that enables a mother to lift a life-crushing weight, like a tractor or a stereotype, off her pinned and struggling child.”]
Martha Beck, Expecting Adam
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