Thursday, April 25, 2013

“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 free genetic tests at the lunch table!
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.


  1. What a great post, and I am thrilled that your perspective will be heard at this conference -- how fortunate for them!

    I am curious, if you have a minute, and I've wrestled with these things for so long now -- how do you feel about seizures and epilepsy -- is suffering the developmental effects of continued disruptions to the brain a cultural construct? Is "suffering" a construct, too? When I'm feeling particularly beaten down by our day to day life, I try to imagine a world where Sophie was "who she is" but access to all systems was simple, we had enough money for help with her, she could access the beach and feel calm all the time, no one would make her brothers feel like she was a freak, I wouldn't have to fight for her to go to school, well, you know the drill.

  2. Elizabeth, I think about seizures, too. I'm not yet ready to embrace my brain tumor, and the seizures it has caused to be a part of my life also aren't something I'm quite embracing.

    But I do get that a large part of what makes my seizures difficult is the effects in the world around me. I'm not in the same situation Sophie is in--I'm not experiencing developmental effects, mostly massive inconvenience. I guess how I'd frame your question: I don't think that the seizures are a cultural construct. How we understand them is the construct, and how we deal with them. I think your imagination exercise is exactly the thing that the disability studies scholar in me would encourage you to do: if we assume that Sophie is who she is, with epilepsy and seizures, what would it mean for us to have a world in which that's simply another form of human diversity? What kinds of supports would need to be in place for her and for you? What kinds of assumptions would need to govern the community so that her brothers were surrounded by people who understood, "Yep, that's Sophie," and who loved her just the way she is?

    It seems to me that SO MUCH of what makes your life difficult, and Sophie's life difficult, is the stuff that's socially constructed--and that's all changeable! The change of course isn't easy--in some ways it's as hard as changing someone's genetic structure. But that change is possible. And I know you're experiencing that in the community of beloved friends you've assembled who do love Sophie exactly as she is and who do help provide the support and structures for your family's happiness. We need more of that.

  3. Imagine if we spent our time money and energy on "better" focusing on changes to the structures and institutions in which we live instead of changes to each of us as individuals. We all know that schools could be better (even if we disagree about what better might mean there), that health care delivery could be better, that food security could be better that public transportation could be better that voting could be better that the availability of public green space could be better, that systems for deliberating over our needs could be better -- but pose some ideas about what is better here you are caught up in a mass of apathy and rigidity and claims about being "socialist" or "naive." What seems exciting about your conference is the certitude people have about what they can do -- that is the certitude we need to have about changing social conditions.

  4. I can't wait to read more. I love, well I just love this.

  5. I can't even tell you how much I love this post. Thank you!

  6. How strange is it that we are both now in the world of genetics research!?! Who would have ever guessed that?

    I'm sure I'll have more to say about the topic later (when my brain decompresses from the end of the semester). One thing I will say is that I think you'll find genetics research to be incredibly simple. And, that's where it's difficult. When things are that simple, you need to be really careful how you frame your sentences and which words to use (for social, statistical, and physiological clarity). A lot of science writers/journalists aren't really being that careful. I think that may be where a window of misunderstanding is opening up in the public.

    Have fun at the conference!

  7. I only wish I had known you. Now I can respect what you shared with the world, before your passing.