So I'm happy to report that his chapter on Down syndrome didn't enrage me as I'd feared it would. It also didn't delight me. It made me sigh several times in sadness. Like, "Really? We're still having to fight this battle?"
One small but significant problem: he uses the phrase "mental retardation" several times. The use of this phrase doesn't define someone's work, of course, but it's often a warning sign. We simply don't use this phrase anymore. It's an insult, not a description. The descriptive phrase is intellectual disability. When people use the phrase "mental retardation" without scare quotes (as one might say, "Back in the day they called people like Maybelle 'mentally retarded'"), then I think at best they haven't been paying attention. And he has been paying attention to other groups. He understands the difference between "deaf" as descriptive and "Deaf" as the term for a cultural group. He explains in his chapter called "Dwarfs" that
The word midget, first coined to describe LPs [little people] displayed as curiosities, and drawn from the midge, an annoying small insect, is now considered deeply offensive--the LP equivalent of nigger or spic or faggot--and many mothers told me how much they feared that their child would be subject to this appellation. But the general population doesn't know that midget is an insult (126).The general population doesn't know, but he knows and he informs them. Why, then, doesn't he know the same fact about "mental retardation"?
Another moment at which I sighed: he began his description of Down syndrome with a list of potential medical problems, a list nine lines long. This is an incredibly common thing. Many women who've had prenatal testing and learned that their fetus has Down syndrome are immediately greeted with this description of the condition: nine lines of potential pathologies. Your child might have thyroid disorders! Celiac disease! And let's not forget Alzheimer's!
Fortunately, Solomon doesn't stay simply in the medical pathologies. His chapter on Down syndrome is complex, but it leans toward grief. I was surprised to find that his discussion of Emily Perl Kingsley, author of "Welcome to Holland," and her son Jason Kinglsey, author of Count Us In: Growing Up with Down Syndrome, portrays them as somewhat tragic. Although this family was a crucial force in destroying myths about Down syndrome, Solomon shows them as trailblazers who are now sort of sad, because they recognized that they couldn't change as much as they'd hoped to. Jason is doing much better than people with Down syndrome were thought to be able to do, but he's still not able to do everything he wants. Solomon reports,
[Emily Kingsley] told me mournfully, "The primary job of most parents is to make their kids think they can do anything; my primary job is to take him down. Reduced to a sentence, it's 'You're not smart enough to do what you want to do.' Do you know how much I hate having to say that?" (176)
But of course, this is true of everybody, right? I live with a person who's gone through years of his life a little sad that he's not a professional musician. As a father interviewed in this chapter says, "We all learn that we have strengths and weaknesses. I'm never going to be able to play basketball. Is it sad when you realize that you're different? Or is it just somehow coming to terms with your own identity?" (218).
|Two people not looking mournful.|
He presents happy parents as well, and he has some very good thoughts about how troubling it is when parents praising their kids with Down syndrome emphasize their intelligence. He notes that "to universalize intelligence and achievement as a measure of worth is in some ways to deny who they [people with Down syndrome] are. They are not so bright and can't accomplish so much by general standards, but have real virtues and are capable of personal fulfillment" (204). I wish he'd take this point a bit further.
Solomon and others who don't have an intimate connection with Down syndrome often display what my friend Claire calls "impoverished imagination." They see people with qualitatively different lives--particularly where intellectual disability is concerned--and they think, "What a shame." What Nehring argues, and what I'll be arguing in my book, is that people with Down syndrome offer more than a model of personal fulfillment--i.e. the best-case scenario isn't merely, "Well, they're happy"--although that's important, of course. But more than this, they bring real diversity to the world--a different way of evaluating achievement and intelligence and value. Maybelle's life is forcing me to question my assumptions, to discard them, and to have the opportunity to imagine something different.
I'm still only a third of the way through the book, so I'll report back in when I've finished it.