Friday, October 11, 2013

Feminist disability studies scholar attends the NSGC

Things I've learned at the National Society of Genetic Counselors' conference:

  • A lot of things that genetic counselors know goes way over my head.
  • But some of the genetic counselors seem really interested in creating the "super-person" (please note the scare quotes).  Like, they advocate doing CMA (chromosomal microarray) in which you examine all of someone's genes, even though you can't tell exactly what a lot of them do.  But you warn the people whose genes you've examined that these little unexpected twizzles might be bad!  They actually said that what you tell parents is "Hope for the best but prepare for the worst."  Holy shit.
  • The exhibit hall for an event like this, where there are people involved in the pharmaceutical industry, is really, really different than the exhibit hall at an academic conference--where people are involved in books.  The exhibit hall--or exhibit hell, as Stephanie Meredith and I have been calling it--is made of money.
  • And while I'm highly critical of all the money, I will say that I got a massage yesterday.  In the exhibit hall.  For free.
It's glowing!  Magical sperm.
  • I also got a foam sperm.  Rest assured that it will soon be on display in my office.
  • All the genetic counselors are women.  All the drug reps are men.  In suits.
  • I'm a huge advocate of abortion rights, but it was a little weird yesterday talking to an MD who performs abortions.  Among other things, she said, "This one couple saw that tv show with the kid with mosaicism [Life Goes On, with Chris Burke, who doesn't have mosaic Down syndrome], and they said, 'Our baby might be nearly normal!'  I said no, that's not realistic."
  • I didn't let this doctor know that I have a child with Down syndrome because I wanted to hear her real, unfiltered thoughts.  And wow, were they troubling.  For instance, she was shocked that people might adopt a child with Down syndrome.  "Maybe it's a psychological thing," she said.  "They'll never have an empty nest."
  • Believe it or not, she actually told me that all people with Down syndrome get Alzheimer's.  First, this isn't true.  Second, it's something I criticized in my talk on Wednesday:  do we need to be talking about Alzheimer's when a child isn't even born yet?
  • When you wake up at 4 in the morning (because your body believes it's seven in the morning), here's what you get for breakfast:
Who doesn't love Nekot cookies?  Mmmmm.
  • If you're doing research that relates to the profits of drug companies, they might sponsor your research:

  • This is not something that exists in my part of academia.  Not at all.  I can't even think of anything comparable.  What wealthy, wealthy corporation would want to sponsor my study of zines by girls and women?  Or of reproductive justice?  Disability as an embraceable form of human diversity?  Nobody's making obscene amounts of money from that stuff.
  • Finally, I've gotten to hang out with some fantastic women (many of whom I mentioned in yesterday's post).  Some of us decided yesterday that we're ready to be the radical bitches who are pushing the world of prenatal testing and disability rights forward.  We'd be clearing the way, frightening folks and getting their attention.  Others decided they'd be the calm, sweet folks following behind us and making the social change happen.


    1. "Who doesn't love Nekot cookies?" I know the caption isn't intentionally glib, but...

      In the name of diversity, awareness, life & death, it's important to remember:

      People who have anaphylactic peanut allergies!

      The crumbs, grease, and even scent of peanut snacks in public places can jeopardize the safety of people with serious allergies.

      Allergy advocates don't want to dictate the food choices of others, only to make them aware.

      Food in our culture is surprisingly (or not?) political. Anaphylactic allergy awareness helps promote responsibility, kindness, and tolerance.

      Ignorance, skepticism, defensiveness, bullying--people can get ugly, as you know, when they're challenged by "difference" and asked to consider the "other".

      People with serious allergies, like those with disabilities, form an outsider group and can be subjected to some pretty scary treatment, even from medical professionals.

      Online hatred abounds, which you know, too. "Survival of the fittest" and "Darwinist" comments are not infrequent in chat groups debating peanut butter sandwiches in the school cafeteria.

      My child has multiple serious food allergies, as well as executive functioning challenges, dyspraxia, anxiety, OCD, and probably some other labels, too, that no one's yet decided upon. He's a walking calculator, but still has trouble opening the front door ( we're talking teenager, here). Do I feel confident that he could use his epipens if necessary or even remember to ask someone to help him?


      I don't even want to think about when he's older and on his own (and we will get there, though his pediatrician once doubted it).

      To people with life-threatening allergies and their parents, peanut jokes aren't funny and peanuts aren't fun.

      Presuming "everyone loves 'em" isn't intentionally dangerous or ostracizing, but shows a dismissiveness and thoughtlessness that divides our community nevertheless.

      1. I'm sorry to be glib and unintentionally dismissive. I didn't mean that at all, and I appreciate your feedback.

    2. Good Morning, I enjoy the way you write and that you shared the real views of that MD. GRRRRRRRR I had a OB/GYN who wanted, read tried to pressure me into an amnio test(back in the dark ages 1988) so I would have time to abort if there were any abnormalities. When I said no she told me story after horror story. I did what any sensible woman would do....changed doctors. I have 3 kids with DS. We adopted 2 so I guess I am one of those with a "psychological thing".
      Thanks for all your hard work!

      1. Ha! Yes, I'm sorry to hear about your "psychological things." :)

    3. Good god. So much for the Kennedy Brownback bill. THIS is what our nationals should be doing... Actually, I think they're supposed to be distributing info already, maybe the doctor is just an ass. Who thinks "they" end up in institutions anymore anyway?

      1. No kidding about the institutions. I found that amazing and appalling. Stephanie Meredith's doing a GREAT job of marketing Lettercase's wonderful, wonderful booklets.

    4. Hi Alison -- that is so cool that you met Paige -- she works at the same hospital I do! That is horrifying and disturbing the comments that were made by the MD. You were very clever to let her speak freely. I've been at conferences where I've been astounded by the things professionals say publicly. I was at one where a neonatologist talked about how in her profession if a child is going to have physical disabilities, they are willing to do whatever it takes to accommodate, but if a child has an intellectual disability, they feel you're better off dead. I'm amazed that these folks are able to get through all their training with so little understanding and such shallow, narrow self-serving perspectives. Thanks for sharing!

      1. Whoa--the neonatologist's comment is heartbreaking. Maybe I'll make reference to your experience in my book.