Here's the thing: it seems to me that one of the central thematic elements of the whole book is the fact that the main character and his (then) wife terminated a pregnancy when they learned that the fetus had a chromosomal difference. The book isn't "about" this at all, but it comes up repeatedly, in significant moments. Of course I noticed this--my eyes pricked up at the very first mention of Django, the fetus who is described as having "an extra chromosome on the twentieth pair.... It might cause grave abnormalities. It might have no effect at all. In the available literature, a faithful person could find encouragement, and a faithless one ample reason to despond" (14-15).
I'm not sure if Chabon meant this extra chromosome to be understood as Down syndrome--Down syndrome is an extra chromosome on the 21st pair, and a trisomy on the 20th pair is a different condition. But given how familiar Down syndrome is, and given that most prenatal testing is performed to detect Down syndrome in particular, I know I'm not wrong to see a connection.*
I don't think I'm offering any spoilers if I say that as the book is coming to its dramatic conclusion, one of the things Landsman--the protagonist--ponders is Zugzwang: being forced to move when there are "no good moves" (400). Being forced to make a decision when there are no good options. My political theory friend Claire has informed me that this is called Hobson's choice. My brother with expertise in Star Trek has informed me that this is called Kobayashi Maru. Any good Southerner would tell me this is called "damned if you do, damned if you don't."
And this idea seems to be at the crux of many of the interviews I've had with parents of children with Down syndrome who are remembering their decision-making process: to terminate the pregnancy or not? It's certainly at the crux of conversations I've had with women who've terminated their pregnancies because the fetus was identified as having Down syndrome, the sense that there are no good options.
Bina, Landsman's ex-wife, articulates this quite well in the next to last page of the book. She says,
We did what seemed right at the time, Meyer. We had a few facts. We knew our limitations. And we called that a choice. But we didn't have any choice. All we had was, I don't know, three lousy facts and a boundary map of our own limitations. The things we knew we couldn't handle" (410).So, three things. 1) "We called that a choice." I think this phrasing is quite wonderful, given how critical I've become in the last several months (years?) of the language of "choice." We like to pretend that things are choices when they're really people struggling to do the best they can with limited options, information, and support. "A boundary map of our own limitations."
2) I find that I'm struck by the importance this book places on this sort of troubling life decision--reproductive decision-making that centers on an intellectual disability--and the fact that I haven't heard anybody talk about that aspect of the book.
3) I'm interested now in collecting additional ways that people attempt to label these kinds of impossible "choices." What's the rhetoric we use--academic, colloquial, etc?
*It may well be that Chabon is making reference here to the trisomy he and Ayelet Waldman's fetus was identified as having, a genetic condition for which they terminated the pregnancy. Waldman writes about this process in her book Bad Mother.
As your non-academic friend, I will mention the colloquial "screwed both ways".
ReplyDeleteBecause I am a child and it makes me giggle.
I love your writing on the subject of choice and disability. My state (Arkansas) recently banned abortion at 20 weeks gestation, and because I've received a fetal diagnosis at 20 weeks, and because pregnancy is (for unrelated reasons) now life threatening to me, I contacted NOW and Planned Parenthood and testified against the bill. The interesting part is, both the bill's sponsor, and me who opposed it, have children with spina bifida. Both of us are driven by our experience with our childrens' diagnoses. But we went in profoundly different directions. Clearly we both chose to continue our pregnancies, and now have beautiful girls with spina bifida. The difference is, while I think the fact that 67% of people who get a prenatal diagnosis of SB choose to terminate is sort of a sad fact, my window into what it's like to sit in that ultrasound room and get scary news has given me great compassion for the "damned if you do, damned if you don't" scenario that comes with fetal diagnosis. The language of "we called it a choice" seems to fit so perfectly.
ReplyDeleteI question whether the fetal anomaly implied in the book is trisomy 21.
ReplyDeleteChabon and his wife terminated after dx of a trisomy. Ayelet Waldman mentions in her interview w/ Terry Gross that a very rare anomaly was discovered and specifically states that her fetus did NOT have trisomy 21. She states that it was a trisomy, but NOT trisomy 21. The prognosis was unknown and ambiguous. Doctors could only tell her that her child's condition may range from almost unaffected to severe. From my google searches, I could not find any source in which Waldman specifies which extra chromosone her fetus actually had. We may assume that she wanted to keep that detail private.
The decision to carry to term or end a pregnancy is intensely personal and gut-wrenching, and based on an individual's unique family situation and own hammered-out, legitimately wrought moral beliefs. If one supports reproductive rights, one must resist the impulse to create a choice hierarchy in which "the only moral abortion is MY abortion" and where the latent expectation is: I carried to term for this reason and, if you're a good person--like me-- so should you.
I do think the topic should be discussed more often and more openly. The judgement and condemnation that
are heaped upon both sides of the issue, though, hinder dialogue. People hesitate to talk about their experiences out of fear and the need to protect themselves in their rawest state. Isolation, as lonely as it is, becomes a sanctuary. That Waldman and Chabon are open about their decision and are each exploring the trauma and grief in their respective ways, is admirable and brave.