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.
- 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: http://www.dseinternational.org/en-gb/.
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.