Thursday, October 10, 2013

Alison at the National Society for Genetic Counselors

I'm writing you from Anaheim, where I'm happily lying in my bed in the Anaheim Hilton, relaxing after being part of a six-hour symposium for genetic counselors at the National Society for Genetic Counselors' Annual Education Conference.

Yes, that's right, a six-hour symposium:  Reaching for Common Ground:  Prenatal Genetic Counseling and Disability Equality.

GREAT picture from Judith Tsipis!
I myself wasn't presenting for six hours--only half an hour.  I was part of a fantastic panel made up of disability studies scholars like Adrienne Asch and Alexandra Minna Stern (both of whom sadly had to send videos because serious life situations prevented them from attending the conference), genetic counselors like Anne Madeo, Melissa Lenihan, Lisa R. Johnson, Dana Knutzen, and Stephanie Cohen,  activist/author/experts like Stephanie Meredith, biologists/medical doctors like Paige Church, and biologist and founder of one of the first genetic counseling graduate programs in the country, Judith Tsipis.  The fact that all these people, from all these different professional locations, were able to come together to talk about the same set of issues--well, it was really impressive.  That sort of thing is rare.

I'd like to give some public applause to Katie Stoll, who worked her ass off to make this whole event happen, and who looked incredibly calm for the whole six hours even though she was scrambling inside.  Katie is contributing to the research I'm doing for my book, and she's an amazing human being.

Katie introduced the symposium and used my definition of disability--it's an embraceable form of human diversity.  That was incredibly cool.

Here's some of what I offered in my talk.  I was going to focus a bit on some of the extensive comments on my Motherlode articles--quotes that often were shocking in their emphasis on getting rid of Down syndrome.  But what I realized as I was preparing the talk was that the comments from Motherlode are often indistinguishable from things obstetricians have said in the last 18 months to pregnant women I've interviewed, women whose prenatal tests showed that the fetus had Down syndrome.  I offered this list and asked the audience to think about which ones were from Motherlode and which were from OBs:

  1. “In my opinion, the only kind, acceptable solution for the handicapped fetuses/babies is abortion at the earliest possible time.”
  2. “The cheapest and easiest way of dealing with this is having an abortion.”
  3. “The odds are your baby won’t be high functioning.  It’s good that you found out now.  These kids don’t do well.  A lot of them are in institutions.”
  4. “You’re talking about deliberately bringing people with painful medical conditions and zero chance of a full and meaningful adult place in society into the world, and then dumping them on the taxpayers when you’re dead.”



Numbers 2 and 3 are from OBs.  Interesting, right?  Here's what I said:
So what I’m seeing are various communities of experts as well as just mainstream folks who are operating based on powerful, unexamined assumptions.  Again, I want to stress that my research isn’t based on the notion that we need to eradicate abortion, or eradicate abortion after prenatal testing—I’m happy to talk with you in more depth about my aggressive support for abortion.  But what my research is revealing is that we seem to see disability as something wrong that needs to be eradicated or cured.  And I want to suggest that it’s our job as a society to offer alternative framings of disability, because seeing it as “something wrong” is a cultural construction.
After the talk I got lots of positive feedback from folks who were open to considering this perspective, and open to considering the possibility that offering a totally blank screen, as genetic counselors do (no guidance, letting potential parents make their own decisions) is both exactly the right thing to do and troubling because it allows stereotypes to present themselves as simple "truth."

Alright, that's it for now.  I'm actually going to try to grade some student essays.  More later from Anaheim (which is kind of a butthole of a city, although the hotel is wonderful).

13 comments:

  1. What an amazing looking group! (and ok, are there men who do genetic counseling??). It is great to hear the positive feedback that you are getting -- making change in the world!

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    1. Virtually all genetic counselors are women. Virtually all drug reps are men. More about this tomorrow.

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  2. I am currently 23 weeks along with my mo/di twin boys who were diagnosed with Ds at 14 weeks. Sadly I have heard all four comments quite frequently from my doctors. However our Genetic Counselor was very neutral. My husband and I decided to continue our pregnancy...we CAN NOT WAIT to meet our beautiful little boys!! :-)

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    1. That's wonderful! Congratulations! I can connect you to some great Facebook groups if your'e interested. Feel free to email me.

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  3. I am SO thankful that our genetic counselors were compassionate and kind when we got our in-utero spina bifida dx. I'm so very interested in your work on this topic. We weren't even offered abortion, because at that point, with twins, it really just wasn't possible. But I know that some 60+% of people who receive an in utero SB dx choose to terminate the pregnancy. I am wildly pro-choice, but am totally with you in that we need to reframe disability to help people make the most informed choices they can. I often tell myself that I wish I could see Claire now when I was in that ultrasound room then. Seeing how full, complete, whole, wonderful, human she is would have surely alleviated my fears.

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    1. Hurray for Claire! Isn't it great to have kids we love who expand our perspective on the world?

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    2. Totally. I want to change the world for her, but I wouldn't change her for the world.

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  4. I wish that you could print that whole paragraph of yours out on some sort of laminated card. I would carry it around and hand it out to people -- professionals and those on the street, alike.

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    1. Thank you, Elizabeth! That is HIGH praise!

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  5. Fascinating stuff - sometimes I think I dodged a blow when our geneticist reached Matt first, though she reportedly didn't say anything asinine. By then, however, I'd already met the cardio who was overwhelmingly positive. Freak bit of luck, there.
    I love that you're out there, shaping the conversation.
    [Also, Anaheim is aka 'The Armpit of LA,' not so much it's butt :)
    And I know a bunch (well, 2) female drug reps, though one sells little blue pills, I wonder what it is about this particular branch of drugs that ended up w/all the men?]

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    1. LOVE to know the real way to identify Anaheim.

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  6. Hi Alison,

    It was great to meet you. Katie told me about your blog and I finally came over to check it out. I love it. I was honored to be at the table with you and all the other women presenting at Katie's pre-conference sympsosium. Keep bringing down the patriarchy, and let me know what you think of Sick: The Life and Death of Bob Flanagan, Supermasochist.

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    1. Anne, I should have mentioned you in particular, because your research meshes with my own so beautifully--it's just that you're quantitative and I'm..."qualitative" seems too strict a word. I'm sort of narrative musing. I'd actually love it if you sent your paper from NSGC to me!

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