embryo screening

Thursday, April 22nd, 2015

Last week, I was in Austin on a business trip. I spoke on a panel at the Texas Librarian Association conference, and my publisher paid for me to fly there and stay in a hotel and eat queso and ice cream and BBQ, to stand on a bridge until dusk and watch the largest urban bat colony in the world emerge from underneath. This is the first business trip I’ve ever been on–before very recently, I had no business doing anything at all–and for all I know it could be the last. So I made sure to tell just about everyone I encountered that I was in Texas on business. The cab driver who brought me back to the airport was the only one to really question what business that was, and when I told him, he flipped out. “ARE YOU TELLING ME I’VE GOT A BESTSELLING AUTHOR IN MY CAB?” he shouted. I was not telling him that, but he ran with it, shook my hand as I was leaving, told me it was an honor to meet me, that he’d see me on TV. No one has ever been more excited about the existence of my book than my cab driver, not even my own mother. Heaven is a business trip to Austin, or maybe just a ride in that guy’s cab.

I had a lot of free time on the trip so I went to BookPeople, the glorious Austin bookstore, and bought a copy of Heidi Julavits’s The Folded Clock. I bought it because it’s so beautifully designed and I love reading other people’s diaries. I walked to the river from the conference center and sat at a table in the sun behind a cafe and read the first fifty pages in one sitting and realized how little track I’ve been keeping of my own life. Today I am twenty-two weeks and a couple days pregnant, and I’ve written barely a word about any of it. There’s too much to talk about, but also not enough. I am not the first pregnant woman ever to exist. I cannot adequately or particularly interestingly describe how weird it is to feel my child moving around inside me. There are “kicks” and then there is whatever happened this morning, as I lay in bed with my hand on my stomach. It felt like something big and round sliding down the center of me and then disappearing–if I had to guess, I think she did a flip forward and what I felt was the top of her head? But, like, who fucking knows, man. I’ve had this persistent pain that I think I’ve finally identified to be my ribcage expanding. Bodies are weird.

And obviously it’s more than bodies. It’s hopes and fears and dreams and anxieties that I should, as a writer, be parsing. But I’m at a loss. In four months this fluttering concept inside me will be an actual human being living with me in my one-bedroom apartment. In a decade or so, she will be a walking, talking conscious thing, with opinions and questions and the ability–I presume–to Google herself. I feel very protective of her already, unwilling to say much about her in so public a forum. And also there’s just the fact that I’m not that scared. By all rights I should be scared, but the scariest thing about pregnancy so far is how not scared I am. She is so desired, so anticipated, so loved. She has been since we saw her for the first time on the second day of the new year, a flickering blueberry-sized embryo on a screen in a doctor’s office. She has been since before that, I think, since Kevin and I sat beside each other on a couch in my apartment in New York watching the director’s cut of That Thing You Do! seven years ago and all I wanted was to hold his hand. 

People are so happy to see you when they see that you’re pregnant. In Texas two teen boys approached, said, “Yo miss, spare some change?” and I inched past nervously, apologetically, and still one called out “Congratulations by the way!” with such genuine warmth. I’ve been given two (2) seats on public transportation. I don’t fit into my normal jeans anymore. I haven’t been craving specific foods so much as I’ve been craving summer. I want soft-serve and Phillies games, fresh air, Monkees records, baked beans and Arnold Palmers and afternoons at the beach. This is all I can think of, for now. Please don’t ask me how my new novel is coming along, because the answer is “I’ve been writing an 80+ page flashback for the last three days.”

anonymous asked:

What do you think about eugenics? Would it be moral, only moral in certain situations, or not moral?

There are so many things we call eugenics. Like, people use it to refer to involuntary treatments or cures or involuntary sterilization. I am very strongly opposed to these things. People also use it to refer to, say, a Jewish couple who are carriers for Tay Sachs choosing to test their embryos so they can have a child who won’t have Tay Sachs. I am very strongly in favor of this.

I think the big distinction is between eugenics as used to talk about policies toward living people, and eugenics as used to talk about what sort of people we should bring into the world. I am in favor of free choice for existing people and I am very much opposed to any policies that restrict the autonomy or reproductive rights of living people, or that subject them to medical treatments they have not consented to.

Talking about what sort of people we should bring into the world is a lot harder.

Fundamentally, I think, there are two philosophically coherent stances. One is that we ought to figure out what the Optimal mind is and then, from here forward, do our best to only create Optimal people. Most disabled people I know are very nervous about this because it does, at minimum, seem to suggest that there shouldn’t be any new people like us. What I think some eugenicists who support this fail to realize is that there also wouldn’t be any new people like them

That said, I know some people who realize that and believe this stance. I wouldn’t tend to call them ableist, because their opinion is that the optimal mind is probably the smallest brain capable of experiencing happiness, which might be that of a rat brain on heroin, and that we ought to fill the universe with the maximum number of rat brains on heroin. This is an odd position but probably not an ableist one. 

The other position, appealing to those of us who’d like there to be more than one kind of mind in the world, is that there’s inherent value in having different sorts of brains and experiences. That a world with a mix of brains and associated lenses for experiences is better than a world where we find the Optimal Brain and do the best to approximate it for everyone. This is what I believe. From there it is a balancing act - I want there to be diversity of minds, but I also value autonomy and happiness, so I don’t want to cause people to exist who wouldn’t want to exist, or who’ll die at age 4 of a degenerative nervous system disorder. My ideal world would include not only every kind of neurodiversity that exists today, but also many thousands of more kinds of possible minds, minds that we can’t yet imagine. It would also give us the flexibility to change our brains and change the ways we experience the world. But Tay Sachs would not exist and it’d be reasonable to modify embryos to decrease their odds of depression or cancer.

In the meantime, for practical reasons, I am opposed to cures existing at all if we expect they’d be used to do lots of involuntary curing, I am in favor of people using embryo screening because I think that falls under respecting their own bodily autonomy, and I am in favor of there being more disabled and neurodiverse bioethicists so when the technology to do more comes along, our perspectives are represented. 

I highly recommend people read Have Mercy and Have Lyle, an article about eugenics written by a friend of mine and a response written by another friend of mine, for thoughtful expressions of some of the concerns here.