This positive description is not intended to inspire. Yes, she is sweet, but also has non-sweet moments. The author stipulates to the existence of said moments, but feels no need to describe them for “balance.” Despite his numerous positive encounters with persons with Down syndrome, the author explicitly rejects the contention that they share a single, winning “personality,” or the underlying assumption that any one can represent all the others. Though the author has strong opinions on a range of social issues, he declines to weaponize his daughter in their service. Laura is not an example in an argument. She is not a success story. She is not a story at all. She is a person, and by describing her, the author does not speak “for” her, but intends to suggest what she is like and raise questions about the world she enters. This work is related to, yet different from, his work as a parent, which is to help her find, in every sense, her place.
Behind these caveats is the wish to control interpretation, and behind that vain hope is, in no particular order, a writer’s ego, a father’s protectiveness and a deep familiarity with the average internet comment section.
In one way, Laura’s Father’s Day note is nothing special: Lots of people with Down syndrome read and write. In another, it is evidence of a radical transformation that began in my lifetime, and is still underway. In the United States, children with intellectual disabilities won the right to attend public school only in 1975, by way of what is now known as the Individuals With Disabilities Education Act, or IDEA. Laura’s words express the law’s existence, the structures and supports that flow from the law, the teachers and aides who make good on the law’s promise, and Laura’s own will to communicate. And they express a future, in which her place depends, in part, on her ability to decode the world around her and make her wishes known.
Lately, that future seems more fragile. That’s partly because it’s nearer than it used to be. Parents call it “the cliff”: the moment, at 21, when a child ages out of the school system. What’s left, after you go over the cliff, are far fewer options for work, housing and an independent daily life. It’s common to point out that intellectually disabled adults “fall through the cracks,” but this metaphor is not quite right, because it suggests a landscape that is mostly solid. It is mostly made of cracks. Most adults with intellectual or developmental disabilities don’t work, even though most want to, and fewer still receive a living wage. Most don’t live independently, even when they could. Many face discrimination, exploitation and abuse.