Susan's Blog

Monday, September 25, 2006

The Unexpected in “Expecting Adam”

A husband and wife are discussing the alarming results of an AFP (Alfafetoprotein) test, given during pregnancy to screen for birth defects. They are also arguing about what they should do about it.

“What we’ve talked about,” I told John in a low, dangerous voice, “is that I am pro-choice. That means I decide whether or not I’d abort a baby with a birth defect. You steer clear of this one, John-boy. It is not your call!”
John looked at me as though I’d slapped him. The anger in my voice shocked even me…
…I rubbed my eyes. I felt terribly confused. “But now…look, John, it’s not as though we’re deciding whether or not to have a baby. We’re deciding what kind of a baby we’re willing to accept. If it’s perfect in every way, we keep it. If it doesn’t fit the right specifications, whoosh! Out it goes.”
John shook his head. “Don’t be silly, Marth,” he said. “You know that isn’t true. We’re talking about the difference between a healthy, normal baby and a defective one.”
The word defective hit me like a hammer. I folded my arms across my growing abdomen as if I could shield the baby from it. I felt irrationally, almost violently protective.
“So what exactly is a ‘defective’ baby?” I demanded…
…I lowered my voice. “I mean, I know there are babies born so damaged they can’t survive on their own,” I said. “But what about the ones that would actually live unless they were aborted? Where do you draw the line? Is a baby with only one hand ‘defective’?”…”What about…oh, I don’t know, a hyperactive baby? Or an ugly one?”

Martha Beck, Expecting Adam, Berkley Books, 1999

Precisely. Or an autistic one.

What is disability: the person’s problem, or our problem?

I am not arguing the pros and cons of Choice here. I am realizing that abortion is a good jumping-off point for understanding the way so many people mistake disability for tragedy. The way we automatically assume that the ‘dis’ in ‘disability’ means being at a ‘disadvantage.’ Or someone to ‘dismiss.’

But they are only so because we continue to view them as such.

If you haven’t already, read the book.


I would have taken either but don’t make me choose between an autistic son and a son with one hand.

— added by Someone Said on Tuesday, September 26, 2006 at 7:54 am

Oh, Guy! A lot of pain in that comment. I wish it were not so for you. None of our lives is easy; who’s to say that autism is worse than any other thing for the person who has it?

— added by Susan Senator on Tuesday, September 26, 2006 at 3:35 pm

Absolutely amazing book. Should be required reading for anyone who, as Martha Beck puts it “goes to the pet store expecting to get the same kind of dog everyone else has. But instead winds up with a cat.” Very healing – and great for discovering the beauties of all the “cats” in the world.

— added by S on Tuesday, September 26, 2006 at 4:20 pm

Love that book. It changed my life. I was always afraid of having a sn kid, but reading this book gave me peace about whatever may happen. Read it way before I had my son, but I definitely thought of it often after his diagnosis.

— added by Anonymous on Tuesday, September 26, 2006 at 10:56 pm

I LOVE that book. It may just be my favorite book that I’ve ever read.
She writes with such wit, insight and compassion. Simply amazing. She should write more.

I read it twice, and the last time I read it was years ago, but I still remember the passage that stopped me dead in my tracks:

“But what is it humans do, like horses live to run for? What do humans live for?”

This is when they were having the abortion discussion, and John was saying if you had a horse with a lame leg you were best off putting it to sleep because a horse lives to run. By implication he was saying a similar fate should befall their child. That was her response.

It sent chills down my back because I think that is the most essential question of our lives.

What is it that humans DO? What do we live for?

Does any of us really know? No. So how can we exclude people with disabilities from this life, when we don’t even really know what this life is for? Who’s to say they haven’t figured out the answer way before us, but just haven’t told us? Who says our way is any better than theirs? Where does this criteria that everyone is held up to come from?

I should read that book again.

Thanks for the reminder.

I remmeber sitting in study hall in high school reading that book and just laughing out loud. I have never laughed out loud at a book before. Because despite its serious subject matter, it is a very funny book. She has a wonderful sense of humor.

All books should do this: engage you, make you think, entertain you, make you laugh, make you ask questions you hadn’t asked before, make you imagine things, make you ask questions about life. This one does.

(Not that yours wasn’t quite good also!)


— added by Anonymous on Monday, October 2, 2006 at 1:15 am

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