Sunday, April 28, 2013

Final report from Boston

Okay, I got my stuff packed really, really quickly, so I get this treat that I used to motivate myself:  I get to blog!

Here are some things I've learned on this sojourn in Boston:
  • Geneticists and doctors and various other scientists are a little weirded out by a talk that doesn't use Powerpoint, that is read from actual tree-created paper, and that makes an up-front argument with stories and ideas as data.  They were actually really open to my paper and asked me loads of questions for the rest of the afternoon and evening--in fact, I was answering questions at dinner last night.  The (great!) guy I was talking to at dinner suggested in a very careful way that I almost sounded...activist?  I, of course, immediately told him that YES, that's a big part of what I do as a scholar:  I identify things that I feel are wrong, unjust, misunderstood, and try to change them.  I was so proud to have my scholarship identified as activism!
  • High heels are tools of the devil.  Really, I'm embarrassed to have to admit this, but I wore heels yesterday, and I ended up with open wounds on each of my pinky toes.  I'm tempted to post a picture here, but I won't.  I walked home from the conference barefoot, navigating the Boston sidewalks with naked feet, airing out the wounds.
  • Chris and I are fantastic on Story Corps.  We are going to be famous pretty soon, so please look for our video becoming viral.  We actually did do a really good job in our Story Corps interview.   It was a fun conversation.  He and I have significant disagreements that we're interested in--we're interested in the other person's point of view.  It's sort of ideal.  We both asked for a copy of the video as soon as it's available, because we want to use it to help plan our spring genetics class that we're team-teaching.
  • Words almost always have scare quotes around them for me, and that’s a concept that’s new to Chris. For Chris, words like “healthy,” “better,” “improvement,” are words that you put at the end of a grant application. You don’t think about them. Healing is always the goal. Eradicating a “mutation” (a word that’s truly used!) is always the goal. I told him that I’m not rejecting those goals automatically, but I’m considering what they mean very carefully. I’m suspicious. I’m wandering around in what feels like treacherous terrain. Is Maybelle’s Down syndrome a “mutation”? Would eradicating her Down syndrome make her “healthier”?
  • Chris hasn't started using air scare quotes yet (I told him I'll stand beside him in class and make the scare quotes on his behalf), but he has started using the word narrative--he used it spontaneously several times this weekend when talking about science!  That, he says, is entirely new, and entirely a result of hanging out with me.
  • Chris is an outstanding person to travel with if you're someone who sometimes has seizures.  I had no seizures on this trip, but I needed Chris to be aware of that possibility, and he was on the alert.  He made sure I was hydrated (an important thing), and he shooed me back to my room when it seemed like I was getting tired (rest is another important thing).
Alright, folks, I'm heading downstairs to eat some free continental breakfast (one of my favorite things in the world--ask anyone who's traveled with me), and then we're heading to the airport.  I've been a bit homesick on this trip, and I'm so eager to get my arms around Maybelle's warm little body.  Soon!  Soon!

Friday, April 26, 2013

Brian Skotko, super-hero for Down syndrome

Me with Brian Skotko
Yesterday as part of my adventure in Boston, I got to meet Brian Skotko.  Brian is a Board-certified medical geneticist and Co-Director of the Down Syndrome Program at Massachusetts General Hospital.  In many ways he's become the public face of progressive medical approaches to Down syndrome.  If Good Morning America wants a doctor with a specialty in Down syndrome, they call him.

I'm not sure how he crossed my path for the first time.  He's written some excellent scholarly articles about parents' and siblings' responses to having a person with Down syndrome in the family (the punchline:  their responses are astonishingly good).  When Bri and I were working together last summer, trying to flesh out the medical part of my book on Down syndrome, we decided to get in touch with him.  He was enthusiastic, eager to talk with us, and we had a wonderful conversation then, learning about his expectations and fears about Down syndrome, and learning about how much medical progress is being made.

I reached out to him the beginning of this week, on the off chance that I might get to see him.  He was warm and welcoming, inviting me to come tour the Down Syndrome Program at MGH and then sit and visit with him.

The Down Syndrome Program at MGH is wonderful.  They work with folks from their prenatal months into adulthood.  One of their main escorts at the Program is Ben, an adult with Down syndrome--often the first adult with Down syndrome that parents and potential parents have met.  They provide their patients with an array of therapies (occupational, physical, speech), but as the kids get older, they also provide them with a psychologist and with sex ed.  I'd like to tell you in more detail about the Program, but neither Brian nor I stopped talking long enough to completely finish one story before we were on to another one.

The thing that really struck me in our conversation was that because of the job I have, I'm given a lot of room for rocking boats.  In fact, rocking boats is part of my job.  If I were too dull, I wouldn't really be a good director of Women's and Gender Studies.  Identifying what's wrong and working to come up with solutions is at the heart of what I do, and very often what I'm recognizing as wrong is the society itself.  I got the sense that Brian wants to do a version of that, as well, but that life as a doctor doesn't provide much room for that.  He won't get tenure the way I got it--the institutional protection for him to be provocative, even radical.  He's going to have to be careful, particularly with an issue like Down syndrome, which is dangerous on multiple levels:

  • Aren't we supposed to be trying to eradicate it?
  • It's an unfortunate shame, not an embraceable form of human diversity.  We'll do the best we can, but we'd be better off with a cure.
  • So we should encourage abortion.
  • Except of course that abortion is such a hot-button issue right now.
  • So we'd better stay away from Down syndrome altogether.  Who wants to do sleep apnea instead? 

I'm now in the process of identifying an academic/activist community for him, a community with medical ties that recognizes the importance of reproductive decision-making and also recognizes the huge role that community plays in creating the meaning of a disability.  Some of you reading:  I will be emailing you soon, trying to set you up as pen-pals with Brian.

My final comment is that Brian is just great.  We had such a good time talking that I know if he lived in Charleston, we'd be having coffee (or sweet tea) at C&B at least once a week.  He ended our conversation with a hug and "See you again soon!"  I do hope so!

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.

Tuesday, April 16, 2013

Back on the scene

MorningHey, folks--

I've been out of commission for the last week.  I suspect I'll feel up to telling the full story about that in a while, but for now, let me just say I'm back!  And happy to be here.

There's a lot going on in the world that I'm going to have comments about.  For the moment, let me just record the fact that my writing is getting attention from famous people named Andrew:

--Andrew Solomon (author of Far from the Tree*) mentioned me in passing in a piece in The New Yorker.

--And then Andrew Sullivan (a blogger that one of my friends who shall remain nameless has a kind of obsessive love for) mentioned the Andrew Solomon piece.

Let me tell you, my latest Motherlode essay has really gotten a lot of attention.  I think we've finally stabilized at 463 comments.

More soon!

*Andrew Solomon only had a tiny bit to say about me, in passing, but I've written several things about Far from the Tree:

Thursday, April 4, 2013

The impossible terrain of motherhood

If you don't follow me on Twitter or Facebook, you may not know that I had another article published today--this one in the online publication The Feminist Wire (good stuff over there!  Check it out!).  This piece is in response to an article my friend Keira Williams wrote at TFW in March. It's about Cynthia Wachenheim, the woman who killed herself and attempted to kill her baby.  Really a sad story, with one component that deals with our beliefs about disability.

Wednesday, April 3, 2013


Alright, we're up to 373 comments, and I've read them all.

A number of folks--members of the Facebook group I'm part of for parents of kids with Down syndrome, my friends in real life and on the internet, family, etc--have commented on how challenging it is to read the comments to my Motherlode piece.

As @Trey tweeted,
Comments on the public, unwashed internet are no place for yours truly.  I'm way too fragile.

You betcha--they're tough.  I don't recommend reading them unless you're interested in learning more about what the diverse public believes to be true about intellectual disabilities.

For instance:
  • Parents and potential parents should imagine the worst when it comes to their child's disability.  Deep pessimism is more realistic/reasonable than hope or happiness.
  • We should consider Down syndrome like cancer:  we should take care of it, but we don't want more of it.
  • Taxes, taxes, taxes--so many commenters lament the tax burden that Down syndrome places on them.
  • By saying we should keep men from raping you're going against natural instinct.

They're also displaying some lack of information.  One person commented, for instance, that Maybelle must have Mosaic Down syndrome since she can read--"most won't read," this person said.  I responded, 
Nope, she doesn't have mosaic--just plain old Down syndrome. And in fact lots of kids with Down syndrome are not only reading but are ahead of grade level. Check out the work of Sue Buckley in England:

If you haven't checked out Sue Buckley and her team's remarkable research, please do!   Downs Ed is the reason Maybelle reads.  Well, let me be more specific:  Cindi May's advocacy of Downs Ed is the reason Maybelle reads.  She told me to try it, and I did, and it has been great.  (The picture on the left is from the Downs Ed site--I realize now, looking at it, that you might thing that's Maybelle at school or something.)

I find that the role I'm taking in responding to comments over at Motherlode is sort of the footnote role:  I'm pointing to the work of scholars that relates to the comments. "Check out Brian Skotko!"  "What about Rosemarie Garland-Thomson?" "For better information on eugenics, look to Diane Paul, Alexandra Minna Stern, and Nathaniel Comfort."

I also find that I'm building a sort of virtual relationship with some of the commenters whose points of view are comforting (like you, Lenny Bruce Wayne--nice work!  I also like Vern and Susan, and then one of my scholarly idols Eva Feder Kittay weighed in, so that was cool.)

As I read, though, I have to keep grounding myself by checking in with the reality of Maybelle in this moment (she's asleep right now, with her sweet-smelling clean hair).  Many of the stories the commenters are telling are frightening, and their narratives of the awfulness of intellectual disability doesn't describe my reality at all.  Life with Maybelle is wonderful.

Tuesday, April 2, 2013


Let me tell you, folks, abortion is a polarizing issue!  This is no surprise, of course.  I'm a feminist scholar.  I teach about reproductive justice, and I've written about my abortion publicly before (and gotten loads of hate mail).

But it's interesting to see how much discussion my Motherlode article has generated in the last 24 hours, and how it ranges from

  • A woman who emailed me and said my daughter should be taken away from me and given to a family who respects her life.  My commitment to reproductive justice means that I'm a murderer, not a mother.
  • A commenter who said, "Wow all rainbows and kittens for you lady" because I'm not acknowledging how hard life with Maybelle will be when she's older.
  • Another commenter who complained that those of us writing about disability rights fail to focus on the "drooling adults in diapers."
  • Another who said, "In my opinion, the only kind, acceptable solution for the handicapped fetuses/babies is abortion at the earliest possible time."
  • And many, many commenters who've complained about how much adults with intellectual disabilities cost society, and how little they contribute.
Let's rest assured that all this feedback is functioning as fantastic research for my book project.

Two things I will say right now:
1.  Folks don't realize to what extent they can start to sound like people who are parodying arguments--some of this stuff I read, and it seems like material from The Onion.
2.  I will never use the term "high functioning" or "low functioning" in discussing Down syndrome or any other intellectual disability.  Useless and stereotyping terminology (I wrote about this last year, here).

And finally, here's a picture of Maybelle, because despite her occasional drooling (or perhaps because of it--what's wrong with a little spit?) she's pretty damn awesome.


Monday, April 1, 2013

North Dakota's abortion law

I wrote a piece that's now up on Motherlode, the NYTimes parenting blog, about the fact that North Dakota has become the first state to ban abortion due to fetal "defects."  I'd love to hear what you think!