A conversation about "A Father's Search for a Drug for Down Syndrome": part one

On Friday, the New York Times Magazine published an article called "A Father's Search for a Drug for Down Syndrome."  The article got to me in different ways than the slate of recent media pieces about the new prenatal testing process.  Reading those pieces, I feel a combination of activist energy and nausea.  For this one, my response wasn't so clear cut (trust me, in my head a combination of activist energy and nausea is pretty clear cut).

As you know, I’m big on examining representations--this is in large part what my graduate training was about--so the article immediately set of alarms for me in the ways in which it represented not only kids with Down syndrome more broadly, but Tyche Costa herself.  For instance, the picture accompanying the article is pretty grim.  If you were going to offer a picture of me and Maybelle, you could print one in which we’re both staring somberly at the camera, or you could feature one of the 1000 in which we look like we love each other and are having a great time together.  Or, you know, a picture like this one on the left from Richard Bailey or Shifting Perspectives

Another example of problematic representations:  our first descriptive introduction to Tyche Costa has her standing at the wrong car, waiting to be let in.  Confusing!  Why is she there?  What's wrong with her?  The author Dan Hurley then immediately supplements this introduction with a description of how she looks.  She’s not described as eager, friendly, curious, or any of the million adjectives I might use to describe a child I just met.  No, she has “a round face, broad nose and heavy-lidded eyes.”  When she speaks, she has “a slurred, high-pitched voice.”  If someone described Maybelle this way in the NY Times, I’d want to kick them in the nads.

But that’s not the main idea behind this article, so let me move beyond that critique and into the larger question the article raises:  what would it mean to have a drug that improves the brainpower, the cognitive functioning, of people with Down syndrome?

This is a tricky question for me.  What I first thought when I read the article was that it was promoting a cure for Down syndrome, and a door slammed shut in my mind.  Cure?  Absolutely not.  Maybelle is fantastic the way she is.  She doesn’t need to be “cured.”  It's a shame that society can't broaden its horizons to recognize that her differences contribute to the world we live in.  She doesn’t need to be made the same as everybody else—whatever that means, because we’re not the same.

Then I asked some thoughtful friends—all parents of kids with Down syndrome, some academics, some bloggers, some general activists—what they thought of the article.  They offered such interesting responses that they opened up doors in my mind for me.  I’ve asked them if they’d be comfortable with me sharing their responses, and they generously said yes.

So we’re going to have a multi-part conversation here about "A Father's Search for a Drug for Down Syndrome."  Some of the contributors include Cindi May, my colleague and friend who's largely responsible for CofC having one of the best college programs in the nation for people with cognitive disabilities; the often-cited activist Brad; and fabulous blogger krlr--someone I'm committed to meeting in person sometime soon.  Biffle might even have something to add!  At the end, I’ll probably weigh in with my thoughts, with a particular emphasis on the ways in which my friends' comments have helped me to question my questions.

Part one
Part two
Part three 
Part four
Part five


J. Baker said...

I thought of you when I read the article, and it really helped me in reading it. I realized how mixed your reactions would be, and that your blog would be the place to turn for an analysis. This is, admittedly, after I got in a long fight about excellent points I've learned from you here on a mom message board.

I'm so glad you are doing the work you are. Thank you!

Alison said...

J. Baker, thank you for the encouragement! How cool that you knew I'd have mixed reactions. And I'm very curious about the long fight you got into. If you feel like sharing, I'm open!

Brad said...

Looking forward to it.

Aaron said...

I like this format. I'm curious to see everyone's take on the article.

Lisa said...

I am struggling with this... actually, not really struggling with the it for me personally, but struggling with how others are reacting to it. I feel like there's some hypocritical talk going on out there (e.g., "if offered the chance to take away that 3rd 21st chromosome I wouldn't; but offer me pharmaceuticals to mask it and I'm good"). I'm trying to keep an open mind, and at the same time trying to let it go. I'm getting way too worked up about it over here.

Preventing Alzheimer's is one thing... using psychotropic drugs to boost IQ is another. Ugh. Trying not to turn this into the longest comment ever ;-) Here's the deal: what really struck me was the father saying he would never have the energy, he wouldn't be able to move forward if his daughter wasn't high functioning. But I guess I have to give him props for being honest. I know a lot of people feel that way. I get really pissed when people use that label... like, "my child deserves more services" or "my child deserves a full inclusion school" because they are high functioning. That to me is just crawling over the backs of those who are "low functioning." I'm in a total tizzy about all this - and just trying to sort it all out in my own head. Honestly, I don't know what I would do if somebody offered me a magic pill that got rid of Sheridan's Apraxia of Speech. So, I'm not above all this... I just feel in my gut that something is wrong. Why so much focus on pharma rather than educational and developmental interventions?

I'm really looking forward to your series here... I really want to hear others' perspectives other than arguments that I feel are contradictory (I don't understand how people can espouse "Disability is Natural" philosophy - and tell me that maybe we should just use PECS for the rest of Sheridan's life (despite the fact that he is making leaps and bounds progress in speech- so it's not like he's stagnant) - but then have them say that using drugs to boost IQ is a good thing, equivalent to getting glasses if you have poor eyesight). Ok. done. sorry.

Alison said...

Lisa, you want to write a post for the series?? I'd love it!

Aaron said...

I just read the article and am trying to obtain the published research that Costa has done to support his current study.

An interesting point, is that there is no mention to whether these drugs have been tested in people without an extra 21st chromosome (besides those with Alzheimer's). I think it would be an important piece of info if these drugs increase cognitive performance in anyone/everyone.

For example, from the lit I've read, it seems like antidepressants (not all)increase cognitive performance. They do this even better with regular exercise.

Ok... I'll have more of a complete thought after having read Dr. Casto's articles...

Lisa said...

would be honored to! I'm in San Antonio this week for the NDSC convention - are you going? - when would you like me to have the post ready? let me know any ground rules :)

Alison said...

Aaron--that is very cool! I look forward to what you find (assuming you can translate it for my non-scientific mind).

Lisa--great! Sadly, we're not going to the convention this year, but next year definitely. If you can get me something by Thursday or Friday, that would be wonderful!