Wednesday, April 3, 2013


Alright, we're up to 373 comments, and I've read them all.

A number of folks--members of the Facebook group I'm part of for parents of kids with Down syndrome, my friends in real life and on the internet, family, etc--have commented on how challenging it is to read the comments to my Motherlode piece.

As @Trey tweeted,
Comments on the public, unwashed internet are no place for yours truly.  I'm way too fragile.

You betcha--they're tough.  I don't recommend reading them unless you're interested in learning more about what the diverse public believes to be true about intellectual disabilities.

For instance:
  • Parents and potential parents should imagine the worst when it comes to their child's disability.  Deep pessimism is more realistic/reasonable than hope or happiness.
  • We should consider Down syndrome like cancer:  we should take care of it, but we don't want more of it.
  • Taxes, taxes, taxes--so many commenters lament the tax burden that Down syndrome places on them.
  • By saying we should keep men from raping you're going against natural instinct.

They're also displaying some lack of information.  One person commented, for instance, that Maybelle must have Mosaic Down syndrome since she can read--"most won't read," this person said.  I responded, 
Nope, she doesn't have mosaic--just plain old Down syndrome. And in fact lots of kids with Down syndrome are not only reading but are ahead of grade level. Check out the work of Sue Buckley in England:

If you haven't checked out Sue Buckley and her team's remarkable research, please do!   Downs Ed is the reason Maybelle reads.  Well, let me be more specific:  Cindi May's advocacy of Downs Ed is the reason Maybelle reads.  She told me to try it, and I did, and it has been great.  (The picture on the left is from the Downs Ed site--I realize now, looking at it, that you might thing that's Maybelle at school or something.)

I find that the role I'm taking in responding to comments over at Motherlode is sort of the footnote role:  I'm pointing to the work of scholars that relates to the comments. "Check out Brian Skotko!"  "What about Rosemarie Garland-Thomson?" "For better information on eugenics, look to Diane Paul, Alexandra Minna Stern, and Nathaniel Comfort."

I also find that I'm building a sort of virtual relationship with some of the commenters whose points of view are comforting (like you, Lenny Bruce Wayne--nice work!  I also like Vern and Susan, and then one of my scholarly idols Eva Feder Kittay weighed in, so that was cool.)

As I read, though, I have to keep grounding myself by checking in with the reality of Maybelle in this moment (she's asleep right now, with her sweet-smelling clean hair).  Many of the stories the commenters are telling are frightening, and their narratives of the awfulness of intellectual disability doesn't describe my reality at all.  Life with Maybelle is wonderful.


  1. I posted about you today and am standing by, armed and loaded. Is that even an expression?

  2. I glanced at the comments this morning and noted your "footnote" style of commenting. I like this approach. You're directly confronting people with resources and information. I think that's a smart approach when talking to people who haven't yet had the notion to challenge their own beliefs.

  3. it is so hard to read these comments on articles around ds. anonimity brings out the worst.

  4. Great piece, Alison. I meant to email you when I read it in the NY Times.Thanks for all you do. Nikki

  5. What frustrates me about the comments advocating the abortion of fetuses with Down syndrome is that 99% of the time *these commenters are not even pro-choice* -- or at least not in the way that I conceive of being pro-choice, as respecting the bodily autonomy and reproductive freedoms of women. They are not feminists; they are not interested in social justice. They're just small, spiteful individuals who like the adrenaline high they get from lobbing verbal dungbombs over the wall of internet anonymity and into the laps of those unfortunate enough to find themselves in the audience. It bothers me to no end that these kinds of comments are taken to represent the "pro-choice" side of the abortion debate when it comes to the intersection of disability. In no way do these scumballs represent me. You, on the other hand, can represent me any day, Alison Piepmeier. Amazing work.