Taking it personally

As you all know, I'm doing research this summer on prenatal testing, and how our mainstream understanding of prenatal testing intersects with and is shaped by our mainstream understanding of Down syndrome.

One of the interesting things that's happening is that in the last month, a lot of press has come out about a new prenatal test that's being developed.  It's a test that will be able to examine fetal DNA based on a maternal blood sample, so the test itself (unlike amniocentesis or cvs) won't cause any risk of miscarriage.  Plus, it can be done early--by the ninth or tenth week of pregnancy, when abortion is a medically simple process.  The drug companies are saying this test will be on the market by spring 2012.

I'll have a lot to say about this, in my research and in op-eds I'm writing.  But what I'd like to say here--what's not appropriate for an op-ed or an academic research project--is that I'm taking this research personally.  In particular, the comments made in newspaper articles and in online commentary can be quite painful for me to read.  For example, recently the Freakonomics blog featured a post called "What Will Be the Consequences of the Latest Prenatal-Testing Technologies?"  They note--as does the Wall Street Journal, every single article out there about the drug, and the drug company itself--that this test is specifically effective for diagnosing Down syndrome.

Here are some of the comments that readers have made:

It can only be good if fewer people with “handicaps” are born. Average productivity would increase, fewer accommodations would need to be made, and a great deal of suffering avoided.

A better argument is that a handicapped child will not only suffer from a poor quality of life, but will also lower the quality of life for their parents and any siblings. If little Bobby can’t go to college because their parents had to blow their savings on the special needs of his disabled sibling then the handicap is no longer centered on the single individual with the problem.

On balance it will be a good thing if fewer people are born with defects.

It’s about time. Better living through science.

Anyone who claims that their child’s mental or severe physical handicap somehow brings love or inspiration into the world are simply in denial about the negative impact on everyone involved. Back in the day these sorts of children would simply be allowed to die. Medical science then stepped in to prevent that unfortunate fate, but any parent who make excuses about how the born-disabled are so important and special fails to release that after they themselves die a child that cannot take care of him or herself will be a burden on someone (either family or the state) and will more likely than not to have a poor quality of life. Since Medical Science has allowed for these children to actually grow to adulthood, it would be no less unnatural to allow science to preempt the problem completely.

I have a series of responses as I read these comments.  Some of my responses come from my academic scholar/teacher brain:  look at the misinformation that's out there!  There's work we need to do to address that, and I'm ready to do the work.  Some of my responses come from a very visceral, ferocious, protective place:  Shut up, you motherfuckers!  You are creating a terrible world for my daughter to live in!

The thing that's sort of surprised me, that I didn't immediately recognize I was doing, was this:  as I read, I constantly flip over to our Flickr page and look at pictures, like this one:

And this one (which gives me a particularly warm and fuzzy feeling because my brother Aaron says she looks Alison-ey here):

I wonder if it would make a difference if I could post pictures like these in lieu of comments.

PS:  I'd like to give a little shout-out here to one of my new blog friends, Brad, who says great things in response to the Freakonomics comments.