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:

Self portrait

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


Aaron said...

wow. Those types of comments are really concerning to me. Besides the issues you've raised, about the societal perceptions and treatments of people with DS, it concerns me how Science and Genetics are being looked at and interpreted by the world.

There is a difference in Genetics and Eugenics. Some of my first thoughts were how to use a less invasive prenatal DNA analysis to test hypotheses about bettering the life of the kid. Not as a detection kit for DS...

"better living through science" - BLEH. that's disgusting.

mary said...

holy crap. those comments are down right disgusting.

Anonymous said...

OK, OK, why stop at prenatal testing. If you want to increase the "average productivity" and decrease the "poor quality of life", we need to have regular blood or DNA testing. We can test for all neurological "differences.. let's put in physical differences... Hmmm how about anything that is not "normal". We could really improve the productivity. Of course, that opens that old chestnut question, who decides...
Yea, creating a Super Race. You need to tell the people who spout that stuff, nice thought process Adolph.

The Dad

claire said...

Those comments make me sad -- in part because they seem to come from some deep fear about people in the world and an attitude of really narrow horizons for all sorts of people. If productivity is what we want for our children's futured than there are a lot more tests we need to start giving....

Aaron said...

HA! "...nice thought process Adolph." Pop, you should write for the Daily Show.

Quiche said...

I think we should all take this personally. The thought process is very Adolph..was my initial thought too! Where does it end? Much of the human race could be condemned by that line of thought!

Alison said...

Biffle and I both liked the comeback, dad. Rest assured that lots of disability studies scholars and activists are making this connection. They're suggesting (and rightly so, I believe) that the line dividing genetics and eugenics is a fine line--and often there's no line there at all.

And in case you're all wanting a bit more scholarship, here are some quotes from feminist biologist Ruth Hubbard:

“No one these days openly suggests that certain kinds of people be killed; they just should not be born. Yet that involves a process of selection and a decision about what kinds of people should and should not inhabit the world.”

She also writes, “Health and physical prowess are poor criteria of human worth," and to that we might also add wealth-production.

Aaron said...

The genetics/eugenics issue (i.e., fine to no dividing line) is very concerning to me. I'm doing quite a bit of research into genetics (and my PhD will probably include a heavy dose) and I'm not seeing any issues related to a eugenics-like mindset in the literature.

Now, I'm reading genetics lit based in the world of Kinesiology (exercise genomics). So, the focus is on health and exercise related physiology (mind and body). As I move into more "main stream" genetics classes and lit I'll make sure to keep my eyes open for these issues.

Hopefully, disability studies will benefit from this type of research soon (e.g., is aerobic exercise or anaerobic exercise more beneficial for people with DS? Does one benefit their physical and/or cognitive* performance better than the other?) A future that includes personalized medicine (and exercise) is a controversial, but very exciting thing.

Alison said...

I suspect that much of the eugenics stuff from genetics emerges in the context of prenatal testing. If you do prenatal testing and discover a genetic status you're not comfortable with, you have two options: keep on being pregnant, or terminate the pregnancy. At this point prenatal testing that determines that a fetus has Down syndrome almost always (around 90% of the time) results in termination of the pregnancy.

Aaron, it sounds like the genetic stuff you're doing isn't going to be about deciding who gets to exist--it's about making people's lives healthier/happier, which doesn't strike me as particularly eugenic. But I'll look forward to hearing about your genetics classes.

krlr said...

I've been avoiding leaving a comment here because I wasn't sure what I wanted to say & I've lurched from one extreme (short & sweet: eff them ALL!) to wanting to write a whole post of my own on the topic. This is just a little too raw, too close to home. Who ARE these people? Are these my neighbors? My co-workers? I've snuggled up in the special needs community online and have intentionally forgotten there are people out there who think I should have saved my insurance company $100k and let my daughter's heart give out.

[Especially the last one. Who the fuck is he to evaluate the amount of love or "burden" my family carries?]

Of course it's personal.

I have no great ideas, no dissertation in the works, but I do want to say thanks to Alison for having the heart to actually read the comments. I think I'd have to buy my own island if I did (& I don't have the funds for my island at the moment).

athy said...

Alison, I read your "Maybelle vs. the Memoir" in our January SKIRT in Winston-Salem, NC, saved it & have been thinking ever since, "Maybelle, Maybelle, Maybelle, the music appassionata baby!" Apparently it's the kind of thing the Pueblo Indians call "good to think." Now that I've watched the videos, I see that she's appassionata about everything! Well the snow seemed a little too much. Did she go out again later? Get that baby a pentatonic xylophone (linear organization) & a hapi/hank drum! See YouTube "HAPI boy" (a 4-year old) & "Vibe drum," etc. Write the notes with magic marker BELOW the drum's tongues; years later it will be found that she knows them. I'm interested in this "community hand signals" thing, but she seems more interested in music videos & then DO IT! The intensity of the attention! Many years from now I think she should see Tai Chi (Lawrence Galante video with the music off). Also later, after more speech, I think she (via you & Boppa) should be able to go back to "free vocalization," "singing in tongues," scat -- a la Bobby McFerrin, etc. She sounds like she might have some speech impediment, but surely it's too early to know, & besides creative unstoppable people like her often build such things right into their repertoire. She certainly picked the right family & friends to be born into. Maybelle, etc. -- GOOD TO THINK.

Martin said...

This is some damn ridiculous bullshit. Sounds like eugenics to me - and Maybelle is goddamn adorable in these photos...obviously I am assuming you don't read these aloud to her, as my language is a touch atrocious for a toddler.

Anonymous said...

Geewhiz she is cute! And you two are something! I gotta say I love your Dad! I couldn't have said it better. Bleh on all of those small minded people who are going to be real surprised if anything happens to them and they need to consider the beauty of imperfections! When they get old should we send them into the woods so they are not a burden on society? Geesh.