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.