“We all live in The Matrix?”

I'm at the GET Conference and the GETed Conferences in Boston this weekend.  These are genetics conferences, people.  Genetics conferences.  Why am I here?  For several reasons.

1. My initial impetus to come was my colleague, Chris Korey, who's a faculty member in Biology and an affiliate of Women's and Gender Studies.  He studies genetics.  As it turns out, I study them, too:  I'm hard at work on a book about prenatal testing, Down syndrome, and reproductive decision-making. 
2. Chris and I have had enough interesting conversations about genetics, disability studies, prenatal testing, and the social construction of disability that we've decided to team-teach a class about genetics in the spring, half WGS students, half neuroscience students.  These conferences were good spaces for me to learn about Chris's research world.
3. And then I had a conversation with Dana Waring, who's one of the conference planners and got her undergraduate degree in...Women's and Gender Studies!  She and I had a Skyped conversation several weeks ago in which I explained to her some of the basics of what I'm researching these days, and she said, "Great!  You're presenting!"

I am fairly certain that I'm the only WGS person here.  It’s really interesting to be perhaps the only person in the room who’s deeply skeptical of medical science and of the genome project--and to be a person who's going to present.  Most of the scholars onstage today focused on ways that intervening in the genome can make beneficial changes: curing leukemia, curing devastating food resistant illnesses, making a person’s cells completely resistant to the HIV virus.

It’s interesting. Of course we focus on deficits. We focus on things that can easily be framed as defects. I’ve faced this in my own life: I don’t embrace my brain tumor, but I absolutely embrace Maybelle’s Down syndrome. What’s the difference there? I want to ask Rosemarie Garland-Thomson about this. She’s written a brilliant paper in which she proposes the idea that even Tay-Sachs could be understood as something that improves humanity, that is a form of human diversity we must recognize and…not embrace, but not simply reject and want to rid our species of.

Chris and I had an interesting conversation about this over breakfast this morning. When I was emphasizing how much I believe that everything is socially constructed, he laughed and said, “I know you do! And I think almost everything is genetic or biological!” Our class is going to be interesting. 

Chris loves a free genetic test!

During our conversation it became clearer and clearer to me that I’m not really kidding when I say that everything is socially constructed. I don’t believe that Maybelle’s Down syndrome only exists as a narrative—but virtually everything significant about it exists only as a narrative. It’s so clear because Down syndrome demonstrates an almost unbelievably rapid paradigm shift—it means something completely different now than it meant 40 years ago. 40 years ago it meant that she would never walk, talk, read, have food preferences, sing the entire songbook of Oklahoma or be dangerously obsessed with Joseph and the Amazing Technicolor Dreamcoat.  These predictions would likely have been true because she would have been institutionalized.  40 years later, at the time of her birth we were informed that she could come to the College of Charleston--and that created a really different meaning of Down syndrome.  What it means—what it is—is what matters, right? The fact that Maybelle has an extra chromosome is far less significant than what sense we as a society make of that, and the stories and structures and institutions and practices we create that uphold that meaning.

This is an easy feminist concept.  We recognize that women make less money than men for reasons that have to do only with narrative and familiar cultural practice.  Even when we control by their undergraduate major, one year out of college (one year!  Before people have started grappling significantly with our radically unfair childbearing policies) women make 89% of what men make.  So feminists get that our institutions, symbols, and individual practices work together to uphold systems of inequality and privilege.

The rhetoric at this conference is significant:  presenters are referring to “chronic disorders,” “diseases,” "chromosomal problems," psychiatric conditions being identified as diseases, but also “variants.” What’s the difference between a “disease,” a “disability,” and a “variant”?  I don't sense a clear distinction.  These words are being tossed around without a clear awareness of their weight.  Does Maybelle have a disease or a condition?  A disease you're supposed to cure.  A condition is far more neutral.

Let me continue with this interest in rhetoric for another paragraph:  Dorit Berlin sees genomic data as being important because it might make people’s lives better. Making people’s lives better. If that’s the goal, then we really have to consider what does better mean. I know that I might start sounding like a parody of myself, but what I’m interested in is how we’re defining better, because that’s not obvious or clear.  For many folks at this conference, it's better to terminate a pregnancy if the fetus has Down syndrome.  Down syndrome is something that needs to be eradicated.  For these folks, it's obviously better.

I firmly believe in an individual's right to make that decision.  What I'd like to interrogate are the cultural assumptions that surround that decision.  When it starts seeming obvious that terminating a pregnancy when the fetus has Down syndrome is "better," then I think we need to interrogate the assumptions underlying that term.

More tomorrow!  I'll share my incredibly happy story of meeting Brian Skotko, who, if he lived in Charleston, would be having afternoon snacks with me at C&B on a regular basis.