Citizenship and Disability

In the six years since I published a book about my son Jamie, Life As We Know It, a great deal has changed in Jamie’s life-starting with his realization that there is a book about him. When I completed the book Jamie was only four, and had not yet entered the public K-12 system. But I did not stop serving as Jamie’s recorder and public representative when I finished that book: I still represent him all the time, to school officials, camp counselors, babysitters and friends, to academic audiences, and to Down Syndrome Associations. I take it as one of my tasks to watch for important things he’s never done before, as a way of charting and understanding the irreplaceable and irreducible little person he is, especially as he gets less and less little, and more and more capable of representing himself.

Jamie is now in his sixth year of school, having entered kindergarten in 1997-1998. In the intervening years he has not continued to perform at grade level (he is repeating fourth grade, at age eleven), and he has occasionally presented his schoolmates with some eccentric behavior. On the other hand, he has learned to read, to do two- and three-digit addition and subtraction, to multiply two-digit numbers, and most recently to do division by single numbers, with and without remainders. My wife, Janet, and I did not teach him these things, but the minute it became clear that he could do them in school, we picked up the ball and ran with it. We’ve tried to make every available use of his startlingly prodigious memory, and we’ve learned that when he tells us that such and such bird is not a parrot but is instead a scarlet macaw, he’s usually right. He has some idiosyncrasies that do not serve him well in school or in testing situations: at one point he memorized the numbers on the wrong side of his flash cards, the serial numbers that indicate each card’s place in the deck. He likes to pretend that he does not know left from right, referring instead (with perverse delight) to his “left foot” and his “other foot.” He is a stubborn ignatz, as people find whenever they try to get him to do something he has no interest in, or whenever his teachers or aides try to make him move from one task to another. For a while he tried to put off unpleasant tasks by telling his teachers or therapists, “Let’s do that tomorrow”; before long he realized that this didn’t work, and began saying instead, “We did that yesterday”-a ruse with which he has had some success.

His conversational skills are steadily improving, but unless you’re talking to him about one of the movies he’s seen or one of the routines he’s developed at school or at home, you’ll find that his sense of the world is sometimes unintelligible, sometimes merely a bit awry. He recently received an invitation to a classmate’s birthday party (his third such invi...