The Shape of the Eye by George Estreich

Author:George Estreich
Language: eng
Format: epub
Publisher: Penguin Publishing Group
Published: 2013-03-25T00:00:00+00:00

The multiple phenotypes that make up Down syndrome include mental retardation, with an IQ in the 20 to 50 range; broad, flat face; eyes with an epicanthic fold; short stature; short hands with a crease across the middle; and a large, wrinkled tongue. . . . Mean life expectancy is about 17 years, and only 8 percent survive past age 40.

I then had the sixth edition of the textbook, which was published in 1996. The tenth edition (2012) reproduces the description unchanged. In either case, the description is profoundly out of date. IQ is, at best, a partial measure of the abilities of people with Down syndrome. But the estimate in Introduction to Genetic Analysis is low to the point of falsehood. Most sources assert that the majority of people with Down syndrome test in the mild to moderate range of retardation—from 40 to 70—and that a significant percentage are in the low normal range. 50 is not the upper limit; it is the mean. Life expectancy, at the time of the sixth edition of the textbook, was not seventeen; it was rapidly approaching fifty.

Beside the text was a line drawing that looked like no human being I knew, but which seemed an exact rendering of what we feared when Laura was born. It was nameless, of course. Its eyes were enlarged, almond-shaped, dark in outline, tilted—half Mongol, half Area 51—and its organs, the defective ones anyway, were visible through its skin. Each was labeled, with a caption in the margin: congenital heart disease pointed, with a thin black line, to a heart like a carious tooth; enlarged colon, to a fragment of wrinkled tube. Big, wrinkled tongue was thrown in for good measure.

Next to the line drawing was an unflattering photograph taken at the Special Olympics. A young woman with Down syndrome is lunging forward with a baton; behind her, slightly out of focus, are two young men, also with Down syndrome. The picture is clearly intended as a sensitive gesture, a reminder of capability and potential. And yet what do these people have to do with the mutant in the line drawing? How, for that matter, should we see them, in light of the text? Do they not have the heart defects, the enlarged colons? They seem to be late in adolescence: are they near the end of their allotted fraction of a score? Or are they, unlike the creature in the line drawing, outliers, anomalous anomalies, healthy overachievers? Which picture should we believe?

In that pair of images, I saw the dilemma of Laura’s early days, when I was stuck between two visions of what she might be. In one, she was the Visible Child: her skin transparent, to reveal the defective systems within. In another, she was a child who might have friends and run with a baton.

It was beginning to occur to me that I was on the wrong track. I had been working on long explanations about what Down syndrome was, something that—after two years—ought to have been simple enough to write.

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