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.

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 invitation since we moved to central Pennsylvania sixteen months ago: we count and cherish each one), and Janet asked him what the birthday boy looked like: "he's a small boy," said Jamie, holding his hand around his shoulder level.

"What color is his hair?" she asked.

"Black," Jamie replied.

"What color are his eyes?"

"Blue."

"Does he wear glasses?" (Jamie has worn glasses for about five years.) "No," Jamie said, "just eyes."

Over eleven years, then, we've come to expect that Jamie will defeat or exceed our expectations when we least expect him to. And from this I draw two points. One, he's a child. Two, and this is a somewhat more elaborate conclusion, although it can be derived from point one: it might be a good idea for all of us to treat other humans as if we do not know their potential, as if they just might in fact surprise us, as if they might defeat or exceed our expectations. It might be a good idea for us to check the history of the past two centuries whenever we think we know what "normal" human standards of behavior and achievement might be. And it might be a very good idea for us to expand the possibilities of democracy precisely because democracy offers us unfinished and infinitely revisable forms of political organization that stand the best chance, in the long run, of responding adequately to the human rights of the unpredictable creatures we humans are. That might be one way of recognizing and respecting something you might want to call our human dignity.

Jamie is, of course, one reason why I am drawn to the question of disability rights and their relation to democracy: every morning I take him to school, I know how very fortunate he is to be living under a social dispensation that entitles him to a public education alongside his nondisabled peers.