The Shape of the Eye--FREE books!

Okay, folks, I have entered the world of the high-class blogs.  I am going to be giving away two free copies of The Shape of the Eye, a book that I reviewed in 2011 with this high praise:  this is a memoir that doesn't enrage me.

That's actually a big deal.  Most memoirs written by parents of kids with disabilities make me ill for reasons I've explained in extensive academic detail in an article in Disability Studies Quarterly.  I won't go into all of that here.  What I will go into is the fact that George Estreich has written a fine book--a memoir that's thoughtful, loaded with chunky bits of insight that make you pause.  And he's written a book that isn't in any way about the fact that life with his daughter Laura is a tragedy.

He's a creative writer, so he believes in the power of narrative.  Here's a quote that may well appear in my own book:

"If our technologies are to benefit people with Down syndrome, then their lives need to become more real to us.  Science can illuminate one part of that reality, and technology can affect it.  But only story can convey it."

The Shape of the Eye was originally published by a university press, but it's a good enough book--and a readable enough book--that Penguin has picked it up, and it actually got reviewed by People Magazine!  Go, George!  Before he became so famous, George and I became internet friends, and I think that's how I got invited to offer up two free copies of his book.

Soooooo.....the first two people to write something in the comment section that makes me smile will have a book mailed to them.

Happy Mother's Day

It's been a wonderful Mother's Day.  This morning Maybelle and I slept until we naturally woke up, we did some dancing in the living room (she thoughtfully cleared away all the dolls and school buses and other things cluttering the floor so that we'd have room), and then we went and got some cinnamon rolls.

Let's talk about cinnamon rolls.  They're made at Wildflour, just a few blocks away from us, and they're only made on Sundays. They're about the size of the human head, and they are fantastically delicious.  Maybelle loves them, as do I.  She's been asking for them recently, so I thought it would be a perfect Mother's Day breakfast.

We biked to Wildflour at about 7:45.  I put Maybelle in clothes, but I wore my pajamas--I figured, hell, it's Mother's Day, and I'm visibly a mother!  We joined the line of about 20 people on the sidewalk, waiting for the bakery to open. Fortunately, I had called in our order at 7:30, so I knew that they wouldn't sell out of cinnamon rolls before we got ours.

We brought our two cinnamon rolls home.  We split the first one.  It was the perfect Mother's Day brunch for me--starchy, overly sweet, yeasty, very little nutritional value.  Mmmm.  And then I was full.  Like, full full.  I thought I might vomit, but managed not to.

And Maybelle said, "More cinnamon roll?"

"Really?"

"More!  More cinnamon roll, please?"

So I hauled out the second cinnamon roll.  Despite the fact that I was feeling a tiny but over-full, I had four bites of the second one.  But only four bites.  Please notice the remains of this cinnamon roll:

She ate half of the second cinnamon roll, which means she ate an entire cinnamon roll.  You'll see, too, if you look carefully, that she ate quite a bit of the frosting off the remaining half.  See those fork marks?  That's Maybelle.

I felt certain that she would vomit, but she didn't!  She did have one hell of a sugar rush, though.  A happy Mother's Day for both of us.

Dance party

Every morning around here has become a dance party.  Between the time we wake up and the time we have breakfast, Maybelle and I have started really rocking out.

I'm assembling a pretty good playlist:  "Groove Is in the Heart" (thank you, Catherine), "Ain't No Other Man" (thank you, Catherine), "Hey, Mickey" (thank you, ten year old me), and, believe it or not, Toby Keith's "Who's Your Daddy" (thank you, Eliza)--a song that is quite good to dance to.

Maybelle's becoming quite the dancer, so much so that I've begun looking for dance classes for her for the fall--and I mean dance classes, not ballet or something where her little body gets trained to rigid Westernized shapes and then they teach her to put on make-up for the performance.  I want her to have the kind of dance I had as a kid:  one thing I remember clearly was using our bodies to interpret Tom T. Hall's "I Like."  My favorite part was getting to run across the room and then use my body to act out an onion.

It's hard to capture Maybelle's dancing with my iPhone, but this gives you a sense.  I'm sorry that I can't capture my own dancing, because let me tell you, I have some fine moves.  I'm trying to teach Maybelle to move her hips, but she doesn't really have hips yet.

At any rate, when there's a morning dance party, Maybelle and I are the people you want to invite.

Love letter

It's a tiny bit early, but this is my gift to my mom for Mother's Day:  my latest column in the Charleston City Paper called "Even Though I'm 40, I Still Need My Mother."

(This means you're not getting anything else, mom!)

Waffles

It's been a week since I've blogged, and the thing that's important enough that it's pulling me away from my end-of-semester grading to write here is

WAFFLES.

Maybelle loves waffles.  Perhaps as much as she loves strawberry-banana Chobani yogurt.  I am a classy parent, so she eats nothing but the best:  Nutrigrain Eggos with Log Cabin syrup.

She's stayed with other families several times recently, and something I've discovered is that she won't eat waffles with other folks.  In part, I think she likes to eat her most familiar food when she's staying at other people's houses, and her most familiar food is yogurt.  So she eats--well, really, nothing but yogurt when she's with other families.

But it's also occurred to me that not everybody has the approach to syrup that I have.  (Mom, stop reading now!)

I was raised in a healthy household.  HEALTHY.  It was somewhat alternative-lifestyle at the time, but now it looks pretty familiar:  every Trader-Joe's-shopping middle class person eats the kind of food my mother fed us growing up.  Nothing like high fructose corn syrup ever entered our house.  The waffles were made in my mother's own waffle iron, and they were drizzled with actual maple syrup.

Which I hated.  I ate my waffles with homemade (I'm not kidding) strawberry jam instead.

So here's what happens with Maybelle:  she gets her waffles drenched in syrup.  Not drizzled.  Her waffles aren't a dry bread-product with just a bit of syrup flavoring them.  They are soaked with Log Cabin.  Each bite is heavy and dripping.  There's a pool of syrup on her plate when she's finished.  A common waffle conversation is

Maybelle:  "Syrup."

Alison:  "Full sentence, please."

Maybelle:  "I want more syrup, please."

And then I comply.

I got home from conferences exactly a week ago and went to the grocery store.  One of the things I bought there was a new bottle of Log Cabin.  Check out the bottle on the table in the picture above.  Empty.  And I haven't eaten any of it.  Maybelle ingests a full bottle of Log Cabin in one week's time.  That's pretty impressive, and really nothing at all like my childhood.

Now I'm going back to grading.

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!

Brian Skotko, super-hero for Down syndrome

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!