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

Things going on here: Lose the Training Wheels

This week I'm volunteering once again for Lose the Training Wheels.  It's such a great program!  Riding a bike is a crucial part of being a kid in the world, and for many of us, it's a crucial part of being a mobile adult (I get to my job every single day by riding my bike--I do love living in downtown Charleston).  As you'll know if you read the link above, a very small percentage of kids with Down syndrome and autism learn to ride bikes--but they can learn to ride bikes if they're given appropriate support and opportunities to practice.

I'm working this week with a woman named Michelle.  She is terrified of riding a bike.  So terrified that as she gets on her two-wheeled bike and rides around the warehouse or, this morning, the huge empty parking lot outside, she often repeats, "I'm so scared!  I'm so scared!"  Meanwhile, she rides her bike.  This, as I keep reminding her, is the definition of courage:  being scared and then doing the thing anyway.  She is a rock star, and I keep reminding her of that, as well, as I race around beside her, trying not to collapse from exhaustion while she zooms on her bike.

I have two quick stories from LTTW.  One is the story of wounds.  Yesterday, shortly after she got up on her two-wheeled bike, Michelle wrecked, and I fell on top of her.  (This was a moment of feeling like the world's worst LTTW volunteer.)  She skinned her knee a bit, and scraped her knuckles.  Fortunately, right before this incident, one of the LTTW staff had told me that a core principle of LTTW is that falls happen, and you just get back on the bike immediately.

Another fortunate thing is that I live with someone for whom a core principle is that wounds are cool. You get scraped up, and then you get to show off the scabs and scars as badges of honor.  So I quickly shared that information with Michelle.  As we walked over to get a drink of water, I said, "Do you want me to call Biffle?  He'll tell you how cool it is to scrape up your knee."  She did indeed want to hear what Biffle had to say about wounds.  So the two of them had a lengthy cell phone conversation.  At one point Michelle said, "No, there's no blood," and I knew for a fact that on the other end of the phone, Biffle was saying, "Oh, well that's too bad.  It's cooler if there's blood.  But it's still pretty cool that you got scraped up."  (And I was right.)

The second story is that when we were standing in a group today another volunteer said to Michelle, "Come on, girlfriend."  Michelle looked at her, scandalized, and said, "You're not my girlfriend.  Girls marrying girls is gross."  I paused for a second, sort of gauging whether anybody else was going to say something.  When nobody did, I said, "You know, Michelle, sometimes girls marry girls, and sometimes boys marry boys, and sometimes girls marry boys.  You get to marry whoever you want.  It's not gross."  One of the event coordinators was walking by, and she said, affirmatively, "We're in a whole new world."  Right on.

Updates on the ADA anniversary piece

Oooo, look, my discussion briefing has gotten picked up twice so far:

Birth to Thrive Online
Deseret News

I'll add to this list as more stuff comes in--more for my own record-keeping than because I really think you all need to read all of this.

Americans with Disabilities Act anniversary

Because I suspect many of you aren't reading press releases at mainstream media outlets, here's a press release that went out today.  Commentary for Baxter Sez readers below. 

The Americans with Disabilities Act: A Civil Rights Landmark for People with Disabilities, Including Down Syndrome

A Council on Contemporary Families Discussion Briefing in Honor of the 21st Anniversary of the ADA
July 26, 2011 

Prepared for the Council on Contemporary Families by Alison Piepmeier, Director, Women’s and Gender Studies at the College of Charleston, and Amber Cantrell, Women’s and Gender Studies undergraduate at the College of Charleston

The Americans with Disabilities Act, passed July 26, 1990, is one of the most significant pieces of civil rights legislation in American history. What the Civil Rights Act of 1964 did for people of color, the Americans with Disabilities Act did for people with disabilities -- a population of between 36 and 54 million Americans, representing 12 to 19 percent of the U.S. population. 

New Rights, New Opportunities, and Continued Challenges After ADA

Before the ADA, people with disabilities had no guaranteed access to public spaces, from courthouses and voting booths to retail stores and schools. There was no requirement that public transportation or gas stations be accessible. Now such accessibility is legally mandated. The ADA also prohibits discrimination in employment, health care, and education. Individuals with physical handicaps have entirely new possibilities to pursue educational and work training and to participate in civic life.

As more students with various developmental delays and disabilities are given the opportunity to go to school with their peers and be taught according to their own Individualized Education Plan (IEP – a free resource for school-aged children entering the public school system), old limitations are also slowly being replaced by new expectations for children with intellectual disabilities. In the U.S. there are currently at least 69 four-year college programs designed to include people with intellectual disabilities, not to mention many additional options for postsecondary education.

But misunderstandings about people with disabilities persist, and the question of how to integrate all people with various disabilities—physical, cognitive, and developmental— into American life has not been fully resolved. For example almost twice as many disabled Americans aged 16 and older (21 percent) live below the poverty level as people without disabilities (11 percent). 

Pre-natal Testing Offers Hope and Concern

Even as the ADA has affirmed disability as one aspect of human diversity that should be respected and protected, technological advancements in prenatal testing have raised the possibility of fewer people with disabilities being born. While many people welcome the chance for parents to screen for severe disabilities, others worry that we may be raising the bar for what is considered an “acceptable” child.

Recent reports from two drug companies indicate that by spring 2012, a prenatal test will be available in the U.S. market which will diagnose fetal genetics through a maternal blood sample. This test will cause no risk of miscarriage and can be performed early in a pregnancy. The test is being marketed specifically for diagnosing Down syndrome. The implication is that parents can find out early and easily if their fetus has Down syndrome so that they can terminate the pregnancy, as do 90 percent of families who currently find out through diagnostic testing that their fetus has Down syndrome. Disability rights advocates and many parents of children with Down syndrome worry that such decisions will be based on false stereotypes about the difficulties of raising a Down syndrome child.

For example, although rumors abound about the difficulty of parenting a child with a disability, recent research paints a more optimistic picture. When a study compared the rate of divorce between three groups -- parents with non-disabled children, parents with children who have disabilities not including Down syndrome, and parents with children with Down syndrome -- the rates of divorce were 10.8 percent, 11.2 percent, and 7.6 percent, respectively. Parents who had children with disabilities were only slightly less likely to get divorced, and parents who had children with Down syndrome were actually LESS likely to get divorced. Several studies, including long-term projects involving qualitative interviews with families that include children with disabilities, have failed to find significant differences in reported happiness or trauma for parents of children with disabilities or without.

Less than 30 years ago children born with intellectual disabilities were not expected to walk, talk, or feed themselves. Thanks in part to landmark legislation like the Americans with Disabilities Act, children today born with intellectual or physical disabilities are quickly achieving more than previous generations thought possible. We may have a ways to go, but today our society is much more accepting of difference and more supportive of accommodating a population that for centuries was devalued and maltreated than it was before the ADA was passed.

For more information, please contact Alison Piepmeier, Director, Women’s and Gender Studies at the College of Charleston, 843-953-2280; piepmeiera@cofc.edu.

See also the ADA National Network (http://adata.org/Static/Home.aspx). 

About CCF: The Council on Contemporary Families is a non-profit, non-partisan organization of family researchers, mental health and social practitioners, and clinicians dedicated to providing the press and public with the latest research and best practice findings about American families. Founded in 1996 and based at the University of Illinois at Chicago, the Council's mission is to enhance the national understanding of how and why contemporary families are changing, what needs and challenges they face, and how these needs can best be met. For more information, or to receive future fact sheets and briefing papers from the Council, contact Stephanie Coontz, Director of Research and Public Education of CCF and Professor of History and Family Studies at The Evergreen State College. coontzs@msn.com; 360 352-8117.


Commentary for Baxter Sez readers:
This was an interesting experiment!  The "discussion briefing" is a new genre for me, so Amber and I weren't sure exactly how to do it, and Stephanie Coontz (you know, Stephanie Coontz--as in THE Stephanie Coontz) was incredibly helpful with suggestions, edits, and reorganization ideas.

After the release had already been released, Biffle offered some good feedback.  For instance, he noted that the ADA has worked about as well as the Civil Rights Act:  it demonstrated our society's intentions not to be a bunch of discriminatory jerkwads, but it didn't actually undo all the discriminatory jerkwadishness.  Some of it, yes, but our societal racism, sexism, and discrimination against people with disabilities are entrenched.

And one very tiny point:  I am so fully committed to people first language that it bummed me out to see the phrase "a Down syndrome child," which I'd changed to "a child with Down syndrome."  It makes the back of my neck itchy when people refer to individuals with Down syndrome as "Downs kids" or whatever, so I'm sorry to see it end up in my discussion briefing.  But it's only a small bummer.  On the whole I'm excited to see what happens!

Girls Rock Charleston

Today's the final day of Girls Rock Charleston, a fabulous week-long camp created by some fabulous Charleston feminists who decided they were going to change the world, and did it. 

Here's their description of the experience:  "Girls Rock Charleston is a music arts camp serving girls from diverse backgrounds in Charleston county. The camp will use music as a platform to promote creative expression, self-confidence, acceptance, and community among young women and girls. Campers will have the opportunity to learn how to play musical instruments, write songs, perform, and promote music through various media in a positive, encouraging environment."

And here's a tumblr so that you can see what the week's been like:  http://girlsrockcharleston.tumblr.com/

They have a showcase in downtown Charleston on Saturday afternoon--if you live around here, come out and see these girls perform!

Is it fair for me to say that I'm extra proud of them because several of the women who made this happen are former students, and even WGS alums?

GQ and Brad's success story over at Girl w/Pen

The title of this post pretty much says it all.  Head over to Girl w/Pen to read an activist success story.

Medical care and children

We've had two Monday mornings in a row that have involved medical care for Maybelle.  Because she has Down syndrome, it's a good idea for us to have various parts of her checked on a regular basis, so last Monday we did an audiology visit, and this morning we had her eyes checked.

Here's what I'd like to say:  MUSC is a solid, reputable medical facility.  They do a great deal of excellent work, I'm sure.  But some of their pediatric clinicians aren't exactly what you'd hope for, in terms of their interactions with patients and parents.  Let's just say that as we biked home from today's visit, we taught Maybelle to say the word "asshole."  She did a good job with it.

Some quick tips for clinicians:

• You're dealing with a child who's almost three.  Let's expect that she's going to be wiggly and not want you messing with her ears or eyes.  If you make us wait a long time, she's going to start unfastening her shoes, or trying to slide down and play Ring Around a Rosie.  This is not a surprise, something that you get to be visibly irritated by, or something that allows you to characterize her as "difficult."  Her behavior made perfect sense to both parents, since we, too, were feeling bored and fidgety.
• If you identify a child as "difficult" to her obviously doting mother, you should expect the mother's smiling face to suddenly stiffen.  Your resident was visibly uncomfortable.  Thank you, resident, for looking shocked and stating immediately, "Most three year olds could be characterized as 'difficult.'"
• Talk to the parents.  Explain to us what you're doing and why.  If you can manage to do so with even a vaguely cheerful affect, that would be a plus.

We'll be finding new places to get Maybelle's hearing and sight assessed, and I'm going to let her pediatrician (who is awesome) know.

Food and perfectionism

College of Charleston is great for providing food to folks who are in big life circumstances--surgeries, recoveries, and of course births.  One of my colleagues recently had a baby, and I signed up to bring her tonight's dinner.  I ran home today between meetings to make a meal:  tomato zucchini pie and chocolate chip cookies.

The pie is my friend Leanne's recipe.  She fed it to me one day, and as I was saying how delicious it was, she said, "It's really easy to make!"  I nodded politely, thinking, "Yeah, right," but then she said, "Get one of those pre-made pie crusts.  Spread a package of Boursin cheese in the bottom.  Then slice tomatoes and zucchini on top, and bake it at 350 until the crust is browned."  Well, now, that is an easy recipe!  And I've made it two or three times for us this summer, and it's delicious.

So I made that for my colleague and her partner and new baby, and whipped up some chocolate chip cookies to go along with it.  As I assembled, Biffle watched.  "Are you sure you're doing it right?" he asked.  "What if they eat it and say, 'Wow, everybody's food was good except Alison's'?"

First of all, let me note that I was doing it right.  But as I pondered his question, I sort of shrugged.  I don't think I'd care if my food wasn't that good.  Not that I want to poison the new family, of course, but if they end the meal thinking, "Yowza, AP isn't such a good cook," I wouldn't be devastated.

It may be that I've found one area of my life in which I'm not a perfectionist!  That's worth celebrating!

And I did send along the cookies, which are reliably delicious.

This post is probably only interesting if you went to grad school with me.

Ida B. Wells

That means Eliza, Deandra, and Rory:  take a look!  (And if anybody else who went to grad school with me has been reading the blog, leave a comment and say hey.)

The first book I wrote--that I researched from scratch and wrote myself--was a revision of my dissertation.  It's called Out in Public:  Configurations of Women's Bodies in Nineteenth-Century America.  It's a fine academic book, a book that did its job, which was to establish me as a Real Life Scholar.  I was and am proud of it, and I love the women I wrote about--19th c. American women who did subtle, creative, radical, and/or dramatic things to challenge the oppressive culture they were living in.  Let me just say that one of these women, Ida B. Wells, will be making an appearance in the WGS Capstone course I'm teaching in the spring.

But other than the women I wrote about occasionally showing up on a syllabus, this book has felt like a little bit of a vestigial organ.  Everything I've done as a scholar since then--everything--has been about contemporary feminist activism, the third wave, zines, parenthood, and now prenatal testing.  I sort of thought that Out in Public was an interesting relic from my past.

And then this afternoon, I was biking to campus, pondering this whole prenatal testing thing.  Here are the thoughts (triggered, in part, by comments on the previous post):

• What differentiates eugenics from reproductive rights?  I'm passionately in favor of reproductive rights:  I'm very open about having had an abortion, which I don't regret.  I believe every woman has the right to determine whether or not she remains pregnant.  This is a private issue, an intensely private issue.  No one is more qualified to make that decision than the woman who is pregnant.
• Eugenics is what happens when reproduction becomes public, when a society starts determining who gets to be fertile and who's sterilized, or--in more extreme form--who gets to live and who's killed.  It's public, not private.
• But the kicker, of course, is that many of the people who terminate pregnancies based on a diagnosis of Down syndrome do so because of public narratives.  Many of the people who made comments on the Freakonomics blog--comments about how much better society would be if fetuses with Down syndrome were terminated--believed that stuff because of public narratives.  And they were arguing that this decision was public, because it would affect the productivity of the larger society.  The private decision is shaped by public stories and beliefs, as well as by public resources.
• So a crucial part of this research project I'm involved in may well hinge on the false binary of the public and the private.  And interestingly enough, this was the crucial theoretical thing going on in Out in Public:  the 19th c. was ostensibly divided into the public realm (all the guys) and the private realm (all the ladies), which in fact was a false narrative.  I based my whole book on showing how false the narrative was, because here were five women who were out in public.
• Some quotes from OIP that are resonating with me right now:  "The binary categories themselves are inadequate and unstable." (True, I think, of all binary categories.)  "Although this discursive and societal model attempted to stabilize and contain shifting power relationships, it was inadequate and its containment only partial."  And how about this:  "The body's complexity and unevenness is a function of the larger cultural discourses that apply pressures to women's shaping of their corporeality and make certain bodily possibilities more or less available to a given woman at a given time."

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.

The Bobo

The other day, a blog friend asked for some info about Bobo.  Rather than offering coherent info, I thought I'd offer two lists:

WAYS IN WHICH BOBO IS NOT LIKE A DIREWOLF*:

• She's large, but not in the ways the direwolves are large.  They can take down a horse in battle.  She could cause a horse some inconvenience, but that probably sounds like too much effort to her.
• If someone broke into our house, I think she might deign to raise her head and look at them.  If she were interested enough, she'd stand up and then enthusiastically nuzzle her head into their crotch.
• She's really itchy.  You rarely read about the direwolves chewing the fur off their tails because of flea allergies.  Also, direwolves don't have to have Benadryl.
• She's incredibly tolerant.  Certain members of our household have decided that a fun game is to play "Gitchee!" with the Bobo, and she doesn't seem to notice.  Nor does she seem to notice when the same member of the household sits down on her.

Here's a video that gives evidence of Bobo's non-direwolf qualities (although it does show her as a bit like Chewbacca, which has the potential to be incredibly cool).

WAYS IN WHICH BOBO IS LIKE A DIREWOLF:

• If she doesn't know you and you make a move toward Maybelle, she will rip your arm off.**

*If you're not familiar with direwolves, count yourself lucky.  They're part of the Game of Thrones book series, about which I'll say:  stay away.  They're addictive, and I've now moved from the fun "Oooo, I get to read the book!" aspect of the addiction to the sickening, compulsive, "Get me the book!  It's not even enjoyable anymore, but I have to finish!" aspect of the addiction. 
**This is also a Chewbacca-like quality.

Baxter Sez = super famous

I think this is the first time Baxter Sez has been quoted in a national publication--a national print publication, I guess I should say, since I know we've been quoted in lots of other people's wonderful blogs.

But check it out!

You'll notice that the post they quoted was the one where I was agonizing about how to respond to what I referred to as my pedagogy failure, but the excerpt highlights my successes, not the particular failure with which I was grappling.

Here's the flipbook version of Skirt!, so you can see the magazine as a whole (this quote is on page 82).

Thanks, Margaret!

Maybelle Carter in a zine

In just a couple of weeks, the amazing Girls Rock Charleston will be happening down the road from me.  The people putting on this event are making a zine for the participants (ages 9 to 16), and they invited me to make a page.  Here it is.  I'm so proud!  I'm not just a zine scholar, but I'm actually someone who can still contribute to a zine.

And I'll bet Maybelle Carter hasn't been in that many zines.

My version of tweeting

Although my brother was into Twitter so early that his Twitter name is simply his first name (this, apparently, makes him very, very cool), I'm not a Twitterer.  I realized, though, that I have my own version of tweeting:  I take pictures with my cell phone and send them to our Flickr page.  If you're interested in knowing what I'm doing on weekends, or in the early mornings, check out our page and you'll see:

Here we are at the downtown Charleston fountain.  I inadvertently put up so many pictures of Maybelle in fountains that I've decided to resist that urge for the rest of the summer.

Maybelle having breakfast at a restaurant, showing off her new sunglasses.

Maybelle having breakfast at another restaurant--this one her favorite of all time. She was very excited to be there.

You'll also see that a number of these pictures are taken on walks, and you can see the trend that's developing that I'm documenting. The last picture is from this morning, and Bobo was a very good sport.