Ballsy choice, picking that particular excerpt from Carrier to run online at TNB.
You’re the one who’s always trying to be so careful in interviews and talks, making sure people see your memoir Carrier: Untangling the Danger in My DNA for what it really is. I’ve seen you bending over backwards trying to keep folks from getting hung up on the fact that you talk about abortion in the book.
I just feel that the real story in Carrier is the struggle: how my husband and I made our way to parenthood despite the obstacles we faced.
Doesn’t everyone face challenges when starting a family?
What were yours?
I happen to carry a genetic disorder, which has run in my family for generations. Dan and I had to decide how seriously to treat the risk. We had to choose whether, and eventually how, to avoid passing the disorder to our children.
What is this genetic disorder?
The main symptoms of hypohidrotic ectodermal dysplasia (HED) are sparse hair, few teeth, no sweat glands, and a slightly unusual facial appearance. There are secondary problems, including chronic respiratory sickness and other kinds of infection. HED is X-linked, which means that female carriers (like me) have no symptoms, but with each pregnancy there’s a 25 percent chance of conceiving a son who is fully affected. Compared to many disorders (since that’s what we’re doing here, right?) HED may not sound so bad—and for some affected individuals, it may not be. That was part of what confused me initially, motivating me to learn more about people who had suffered from HED—especially my grandfather, Earl. Researching his life story, I discovered how the disorder turned a brilliant man into a tragic figure. It became clear to me that even if HED isn’t directly life-threatening, it can be profoundly life-altering. Dan and I had to decide how far we’d be willing to go in order to keep our children’s lives free from that risk.
What choice did you have?
We considered everything: worrying about it, not worrying about it, a childless life, adopting. But eventually we came to see that despite the risk, we both wanted to try for a healthy biological child. Our options then boiled down to two: In-vitro fertilization (IVF) with preimplantation genetic diagnosis (PGD)—an expensive process with a lot of hassles. Another choice was to become pregnant the usual way, and then to test fetal cells between 10 and 12 weeks of pregnancy with chorionic villus sampling (CVS), or in the 15th week via amniocentesis. Results would come 2-3 weeks later, along with the possibility of an excruciating choice.
Sounds like the same guarded rhetoric you’ve been using all along. So I just have to ask: How did you feel about that NPR interview?
So you heard that.
Some people think Liane Hansen missed the point of your book—the journey, as you say. She only wanted to talk about one little part.
I couldn’t sleep the night after the interview or the night after that. But that doesn’t mean it was a bad thing. It was what it was, and I rocked that interview.
What “was” it, then?
Up to that point, I had been trying really hard not to alienate potential readers who would ignore my book if they knew I considered ending a pregnancy. (Like the gal who wrote this “review” on Carrier’s Amazon page: “Just listened to the story on NPR. What a selfish person! That’s all I have to say! I would never buy this book!”) But after my interview hit the airwaves, I started hearing from women who shared facets of my experience. I realized that in being vague, I was keeping at arm’s length another audience: those who might come to my story for the things we had in common.
Some of those listener comments on your NPR interview were tough.
For the most part, they weren’t anything I hadn’t dealt with before. But I thought Kansas Kid said something interesting: “It was a failure of journalistic honesty to call an abortion a ‘procedure.’”
Right—Liane never used the word “abortion” in the interview, and you didn’t either. She said “procedure,” and “terminated.”
And the content of the interview was perfectly clear. The following week, Liane read a letter on-air from a listener who criticized her for avoiding the word. I think Liane was simply trying to be sensitive to me as a person by not using loaded terminology. She seemed to recognize that I’m a human being, not a debate topic. If there was anything political about her word choice, it seemed like an attempt to keep from politicizing my story.
What’s sensitive about not saying abortion? What’s political about saying it? And by the way, can you say abortion?
You did it!
Yes, but I’ll admit, that word feels like “conservative agenda” in my mouth. It’s got so much propaganda plastered all over it that I feel like it needs a good pressure-washing. It’s so damn loud no one can hear anything else in the room. Why didn’t Kansas Kid eat it up when I called my 12-week fetus a “baby?” He wants the word “abortion” because that is the word connected to all the negative imagery. If you say “end a pregnancy” or even “decide to terminate,” the highway billboards don’t necessarily pop to mind. The screaming politicians don’t leap into your ears. Shouting protesters don’t wave their signs in your peripheral vision, and the pope doesn’t start breathing down your neck.
Tell me how you really feel.
Okay, I currently live in Holland, where abortion is not a political issue, and therefore the word is neither loaded nor taboo in conversation. Abortion is seen as a personal medical decision like all others. (Incidentally, Holland has the lowest abortion rate in the world due to frank sex ed and high contraceptive use.) Living here has shown me that “The Abortion Debate,” which used to seem cosmic, is actually just localized in America.
It doesn’t seem to have occurred to the Dutch that women are incapable of handling their own decisions. But in the U.S., the message is clear: American women can’t be trusted to understand the significance of their actions. Therefore they must be cornered into watching ultrasound images, forced to hear tiny heartbeats, goaded to pronounce a word that feels in the mouth not like flesh and blood and life and death but woefully less: politics and religion, money and power. I can say “abortion.” But I can share so much more with someone who will listen.
That makes one of us.
Maybe that’s what you get for writing about abortion.
Carrier isn’t about abortion.
Then what’s it about?
It’s about people.