12.01.2012

My early thoughts on Far from the Tree

Running!
I've made progress in reading Andrew Solomon's Far from the Tree:  Parents, Children, and the Search for Identity.  This is the book I referred to in a blog post earlier this week because so many people had sent me links to Cristina Nehring's review on Double X.  Nehring offers her story of her own mysterious, challenging, delightful, and enriching life with her daughter Eurydice as a counternarrative to what Solomon offers.  Her review made me fear that Solomon's take on Down syndrome was going to make my jaw sore from all the grinding of my teeth.  My expectations for him were low.

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).

Tree lighting on campus! Amber and Maybelle.
Two people not looking mournful.
I met Jason and Emily before Maybelle was even a year old, and they didn't seem tragic to me.  I thought it was just wonderful to meet them, and I wish I had a picture of Jason squatting down and playing with Maybelle and her friend Rosemary who were lying on a baby blanket together.  As I read this chapter, I wondered what the Kingsleys think of it as they read what he did with their interview.  Was this what Emily Kingsley was going for?

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.

2 comments:

Megan the Maybelle Sitter said...

You know, normally I'm the first (maybe the only) person to point out that most people have never heard of intellectual developmental disabilities which is why they use the term mentally retarded. I hate that term. What really grinds my gears is that this guy had the opportunity to inform people of the correct (at least this month) terminology. It also makes me wonder if he used people first terminology (ie: The child with Down Syndrome rather than, the Down Syndrome child).

krlr said...

Hmmm. Withholding judgment till you're done &/or I read. In a perfect world I'd read for myself & not let you or the Double X review influence me but my reading time is short & I've a long list of books that I have warmer & fuzzier feelings about going into. 'Less enraging than anticipated' doesn't make me want to rush out to the bookstore.