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!


  1. I'm glad that your challenging the scientists! It's amazing how some scientists can be so open-minded and caring about their data, and at the same time you can tell that they really haven't put much thought in the actual people that represent the final stage of their work.

    Also, I love the word mutation. One of the reasons is because I feel that people don't really understand what it means, and that scares them. Mutations are special, special things. Random mutations have made every species on the planet become what we are now. We are all mutants.

    Geneticists will take it one step farther and say that any "mutation" in the genome has to occur in less than 1% of the population to be truly classified as a mutation. Any other mutations are classified as "variations" or "polymorphisms" or some other non-gratifying phrase. What are the stats on the percentage of people born with Down Syndrome? I think it's something like ~11.8%. So, I would say - No. Down syndrome is not a mutation. We've just gotta hope that Maybelle gets bitten by that radioactive spider during highschool. :)

  2. I have so loved reading your dispatches from the field and look forward to this ongoing scholarship/activism that you're doing. This post reminded me of a guiding quote by Jon Kabat-Zinn:
    "Healing does not mean curing, although the two words are often used interchangeably, While it may not be possible for us to cure ourselves or to find someone who can, it is always possible for us to heal ourselves. Healing implies the possibility for us to relate differently to illness, disability, even death, as we learn to see with eyes of wholeness. Healing is coming to terms with things as they are."