Body Language

I’ve written before about the gendering phenomenon—how eager we are to gender our children, for whom gender, not to mention sex and sexuality, are meaningless, carrying only the meaning that we as skewed, culturally shaped adults bring with us.

My daughter Maybelle, although she has a very gendered first name, does not go through the world as a specifically gendered being.  She is equally fascinated with baby dolls and dinosaurs.  She loves trains and Willie Nelson’s “Whiskey River” (appropriate for a three year old?  Perhaps not, but she does love it).  There are many factors that lead to this androgyny of interests:  her parents, of course, being fairly radical feminists plays a role.  But also I think she doesn’t pick up the gendered cues that her classmates are beginning to perform and observe.  Having an intellectual disability is sort of beneficial in that it screens the subtle nuances—nuances that I consider fairly pathological.

Emotions, Maybelle responds to.  But the notion that “girls wear dresses, boys play with dinosaurs”?  Not so much.

Adults, however, love some gender distinctions, particularly when little kids are concerned.  Many adults who adore Maybelle get tingly at the idea of dressing her in little girl dresses.  And here’s the most successful strategy to come along:  Maybelle’s preschool teachers have suggested that they’ll have an easier time helping to potty train her if we send her to school in dresses.

That’s been an effective strategy.  We’re very eager for Maybelle to become potty trained, and she seems eager to give it a try, herself.  So we’re sending her to school in dresses.

Her dress-wearing was big news.  Every person in Maybelle’s preschool—from the director to the undergraduate student workers—have commented on the fact that Maybelle often comes to school these days wearing dresses.  My mom, who lives about 500 miles away from us, heard about this fact through a friend of a friend, who found this significant enough that she called my mom up to say, “I hear Maybelle’s wearing dresses!”

A couple of things strike me about this.  First of all, if dresses really do make potty training easier, why aren’t the little boys in Maybelle’s class being encouraged to come to school in dresses?  And second,  it’s interesting how much validation Maybelle gets.  “You look so pretty!” adults say to her.

There’s something satisfying to many adults about a girl wearing a dress, and they’re initiating the process that will make this feel satisfying to Maybelle, too.  She’ll pick up on the fact that she gets excessive good vibes when she wears a dress.  They don’t encourage boys to come to school in dresses for the same reason that they validate Maybelle for wearing one:  these are both phenomena related to us creating and perpetuating gender.

Of course she’s adorable in her dresses, but she’s also adorable when she looks a bit like a rock chick, like a comic book fan, like a nerd in her glasses, reading a book.  I want her to have a lot of space to develop the personal expression that fits her best, no matter how that maps onto our current configurations of gender.

Last weekend at the playground, a little boy around three years old approached my daughter Maybelle, who’s also three.  “Are you a boy or a girl?” he asked her.  She didn’t answer—I suspect she wasn’t sure how to process that question.  And to tell the truth, neither was I.

After a pause, I said, “She’s a girl.”

“Then why is she wearing boys’ clothes?” he asked.

This one I knew the answer to:  “Everybody can like Spiderman,” I said.

“Spiderman!” Maybelle agreed enthusiastically.

Maybelle’s dad has begun commenting that when he picks Maybelle up at preschool, the kids are divided by gender on the playground.  It’s not that they’re playing with different things, they just aren’t all playing together.

“Who does Maybelle play with?” I asked.

“Everybody,” he said.  “She doesn’t seem to understand the way they’re dividing.  Nobody turns her away.”

This is one of the interesting things about having a kid with an intellectual disability:  Maybelle doesn’t really get gender.  She calls her bed a “big girl bed,” because that’s the exciting billing we gave it when we made the transition from the crib, but “girl” doesn’t necessarily have any meaning to her.

Her speech therapist occasionally asks her to identify pictures by gender:  “Is that a boy or a girl?”  And Maybelle doesn’t know the answer.

I have to say, I’m glad that she doesn’t.  I recognize the argument that could be made here:  gender is a central component of how our culture works.  In order to be a person who functions in the world as it now operates, a person needs to understand the conventions of gender, the backpack of cultural expectations, needs to be able to use gendered pronouns appropriately and identify girls and boys, men and women.

And yet part of what I do in my job is to try to destabilize all that stuff.  I have a number of students who identify as trans, who are recognizing that they don’t fit within the gender binary that’s been taught to them from day one.  I have a still larger number of students who may identify with a gender, but want that gender to be pretty significantly reworked.  I identify with a gender, but I don’t believe that there are only two genders, nor do I believe that anybody should be automatically consigned to one.

Maybelle currently likes dinosaurs and big trucks.  She’s a tiny bit obsessed with The Sound of Music and John Lee Hooker’s song “Boom Boom.”  She plays drums, and she does “Ring Around a Rosie” with her baby doll.  She rolls a stuffed octopus around the house in a stroller.  One of her favorite items of clothing is her Spiderman sweatshirt.  This sounds like a great collection of interests, one not at all constrained by binary gendered expectations.

When people ask Maybelle, “Is that a boy or a girl?” or “Are you a boy or a girl?”, I think the correct answer might be, “I don’t know.”  Or maybe, “Who cares?”  The fact that gender isn’t intuitively obvious to her might be a benefit.  She might have the opportunity not to have to unlearn the damaging, sexist stuff that my students, my colleagues, my friends, and I have to grapple with.

A few years back I was a regular blogger about the Roe v. Wade anniversary. As it turns out, the last post I wrote about Roe v. Wade was in 2008. That would be a blog post I wrote while I was already pregnant with Maybelle but wasn’t publicly announcing it. I was intentionally, happily pregnant, and I was still adamantly in favor of women’s reproductive rights. This is an important thing to recognize.

I’ve obviously had a lot of other stuff going on since then. I’ve been blogging a lot about parenthood, and about disability rights. But this year I’d like to return to the old tradition and write a post offering a shout out to women’s reproductive freedom.

As I’ve always said, a woman’s control over her own reproduction affects every aspect of her life. Every aspect. So I maintain now, as I always have, that we must give women the right to end a pregnancy if they don’t want to be pregnant, and the pregnant women themselves are the ones who get to decide why they don’t want to be pregnant. It’s not a decision that other folks should have a legal right to weigh in on.

I also want to say that I’ve been pretty powerfully influenced by readings I’ve been doing about reproductive justice. When feminists talk about reproductive rights, generally they’re talking–as I am here–about the right to have an abortion. And this is hugely important. But reproductive justice expands that concept. Scholar Kimala Price explains that the reproductive justice movement’s “three core values are: the right to have an abortion, the right to have children, and the right to parent those children.” If we really want women to have control over their reproduction, that doesn’t just mean that they get to choose not to be pregnant. It also means that they get to choose to have and parent children.

Here’s another great quote from Dorothy Roberts in Killing the Black Body (please note that if you’re in my capstone course, this is the book we’re discussing on Thursday):

Reproductive liberty must encompass more than the protection of an individual woman’s choice to end her pregnancy. It must encompass the full range of procreative activities, including the ability to bear a child, and it must acknowledge that we make reproductive decisions within a social context, including inequalities of wealth and power. Reproductive freedom is a matter of social justice, not individual choice.

Why is this particularly important to me these days? Because I’m doing research on prenatal testing, and we know that when a person has prenatal testing and learns that the fetus has Down syndrome, 90% of those fetuses are terminated. And we all know that when 90% of a group is doing something, it’s no longer a matter of simple “choice.” As Roberts notes in the quotes above, we’re not simply individuals in a bubble, with 90% randomly choosing termination. “We make reproductive decisions within a social context,” and our social context tends to tell us that kids with Down syndrome are no good. Defective product. Best to get rid of that fetus and start over.

Biffle and I didn’t decide to get rid of that fetus, and we’re incredibly glad about that.

I’m adamant that we–and all other potential parents–should have the right to terminate any pregnancy that’s unwanted. My ability to choose not to be pregnant is as important now as it’s ever been in my life, if not moreso.

But I also see it as part of my reproductive activism to change the social context that would identify my daughter as a defective product (and the word “defective” is often used in descriptions of Down syndrome, trust me–that’s not me being hyperbolic). I want to change the inaccurate perceptions of Down syndrome that not only affect people’s decisions while pregnant, but that affect the options available to folks who are here in the world: school inclusion, for instance, college possibilities, media representations, availability of jobs.

Is it a stretch to say that programs like REACH are connected to my reproductive justice activism? Maybe a tiny stretch, but only tiny, because if I’d known while I was pregnant that I was soon going to be teaching people with Down syndrome in my college classes, that would have immediately challenged the stereotypes of Down syndrome that were frolicking unnoticed in my mind.

Perhaps I would have had a clue that the thing that’s really challenging is parenting.  The hardest things for me about being a parent have nothing at all to do with Down syndrome.  Learning ASL so that Maybelle can communicate earlier?  Easy and fun!  Dealing with a person in your house who says “NO!” to every single question you ask?  Challenging (and developmentally appropriate)!

Alright, so hurray for Roe v. Wade.  People who can get pregnant don’t have full humanity unless they have the right to control their own bodies.  And hurray for reproductive justice, which reminds us that reproduction is a far larger issue than abortion, an issue that urges us to make the world a place worth living in.

The end. (Cross-posted at Baxter Sez.)

This week, a drug company called Sequenom has made their prenatal blood test, MaterniT21, available in select markets.  This is the test I made reference to in a post or two over the summer:  it’s the test that can examine fetal DNA from a maternal blood sample.  What this means is that it can provide the information that, until now, could only be gotten from amniocentesis or CVS, and these are tests that carry a risk of miscarriage.

Well, I say it can provide the information that an amnio or CVS provides.  These are tests that examine fetal genetics for a wide range of things.  MaterniT21 looks for one thing, and one thing only:  Down syndrome.

Amber Cantrell and I have interviewed quite a few women as part of an extended research project. Those who’ve chosen not to have an amnio or a cvs have said this was because of the risk of miscarriage.  A maternal blood test carries no risk of miscarriage, and it can be done quite a bit earlier in the pregnancy than an amniocentesis.  Earlier in the pregnancy matters because 90% of people who discover through testing that their fetus has Down syndrome decide to terminate the pregnancy.  If you can learn that your fetus has Down syndrome earlier in the pregnancy, abortion is safer and easier.

As you all know, I am a big advocate of reproductive rights, so this isn’t a post saying that folks shouldn’t have abortions.  It’s a post saying that I’m interested in seeing how this new technology affects our conversations about parenthood and disability.  We’re a culture that often lets technology–rather than thoughtful ethical conversations, for instance–take the lead.  So where will this technology lead us?  What will it mean for the decision-making processes of women who are pregnant?  What will it mean for people, like my daughter, who have Down syndrome?

Cross-posted at Baxter Sez.

If you’re someone who reads blogs written by parents of kids with Down syndrome, you’re probably aware of what’s been going on with GQ.  This magazine–which, let’s admit here on a feminist blog, is problematic for lots and lots of reasons–has a current online article called “40 Worst Dressed Cities.”  In this articles, they critique cities like Nashville and Omaha for the ways that men in these cities dress.

What makes this something other than just goofy or a waste of time is how they described the city of Boston:

“‘But Boston is the epicenter of prep style!,’ you say? That’s true, but due to so much local in-breeding, Boston suffers from a kind of Style Down Syndrome, where a little extra ends up ruining everything: Khakis!—with pleats. Boat shoes!—with socks. Knit ties!”

When I read this I thought, “Come on, y’all–are you in seventh grade?  What the hell makes you think this is funny–or even acceptable?”  But I have friends who did more than just think grouchy thoughts:  they spoke out.  For instance, my friend Brad wrote this to the magazine’s editors:

As a parent of a young child with Down syndrome I feel compelled to point out the DOJ statistic that people with DS are 1.5 times as likely to be the victim of a violent crime, and women with DS are 2 times as likely to be the victim of sexual assault.  While stories of people with DS committing a violent crime are few and far between, stories of them as victims of such crimes are quite wide spread.  These crime rates follow our society’s poor perception of this group of people; with poor attitudes come poor treatment.

According to your mission statement: “GQ is the authority on men….providing definitive coverage of men’s style and culture. With …award-winning writers, GQ reaches millions of leading men each month. ….. GQ is simply …smarter.”

I note you have just slandered my daughter and her right to be accepted in society to “millions of men” and told them that even in their “smarter, leading culture” it is okay to marginalize and make fun of people with Down syndrome for a cheap laugh.

To see a comment like this from an anonymous person in the comments of an article is one thing, but for it to be printed in a legitimate national magazine catering to well-educated and affluent people is quite scary to a parent who has to struggle just to ensure his daughter maintains her basic rights.

Lastly, I will point out that my 3 year old daughter has spent 750 hours in various therapies, she has undergone open heart surgery at three months, and she has undergone 5 surgeries and 4 other separate week-long hospitalizations in her short 150 weeks on this earth.  Each time a nurse came at her with a needle, she cries, but she has fought back with a zest for life that is indomitable.  She has worked harder in her first three years of life than most of us do in decades, and she comes back with a smile.  I believe the adversity she has overcome and her attitude is quite admirable.  But apparently, to GQ, she should be thrown under the bus because someone wore socks with boat shoes?!

He then attaches pictures of his beautiful daughter, one picture from her infancy when she was getting prepped for heart surgery, and one from today, of her delighted smile as she swings on the swingset.  Yesterday he got this reply from the editor of GQ and the author of the article:

Dear Brad,
We received your letter and absolutely understand that we have caused you and your loved ones pain. Hurting anyone’s feelings or being disrespectful or cruel was certainly never our intent, but your letter helped us understand how poorly chosen our words were. What we initially posted was insensitive and ill-informed, and we’ve removed the offensive language from the website. We deeply regret our error in judgment. There is no excuse. We are both very sorry.
Sincerely,
Sean Fennessey, editor, GQ.com
John B. Thompson, writer, GQ.com

Other folks got the same letter, and GQ has indeed revised the language on the website.  This is an example of the kinds of change that can happen when we think of ourselves as people with a responsibility to speak out against unacceptable behavior.

I think it’s easy for those of us who are concerned about oppression to start feeling tired and overwhelmed, and to roll our eyes and complain to our loved ones about things like the GQ article, but to stop there.  I did that!  I hadn’t even blogged about it.  Last night I asked Brad if I could share his narrative because I find that success stories like this encourage me to speak out.  I suspect that Sean Fennessy and John B. Thompson might think twice about how they depict people with cognitive disabilities in the future.  This has made a difference.

Meanwhile, Brad is pushing for more:  he wants GQ to give a free page of ad space in their next issue to the National Down Syndrome Society or the R-Word organization.  And when he’s successful, I’ll post about it here!

This week I sent a video of my daughter Maybelle to a friend who recently had a child with Down syndrome. In this video, Maybelle—who’s almost three—is reading word cards, signing and saying the words she sees. My friend responded, “That’s pretty impressive. Is that uniquely Maybelle, or is there some sort of emerging sense that kids with Down syndrome read precociously?”

Of course I was delighted to answer this question for my friend, and I’ll answer it for you: Kids with Down syndrome tend to be good visual learners, so they can often learn to read fairly early. (Downs Ed is a fabulous group in England that’s been leading the research on this.) Kids with Down syndrome may have difficulty speaking effectively, but they can often read quite well–ahead of grade level, etc–if they’re taught to read. This “if” is important, as illustrated by another conversation I had this week.

One of my best friends is an occupational therapist. She just started working with an eight-year-old who has Down syndrome and is in the life skills class at his public elementary school. The life skills class, for those who don’t know, is essentially the class for kids that the school system has decided can’t learn. It’s a segregated special education classroom where kids aren’t taught the kind of academic subject matter you’d learn in second grade; instead, they’re taught how to get dressed, how to sit quietly, how to interact with another human being. As an example of the kinds of academic challenges that are left out of life skills classes, this child is eight, and he can count to three. To three.

Maybelle is almost three years old, and she can count to ten, say the alphabet, and read more than 100 words. I share this with you and with other people in the world not because it’s “uniquely Maybelle.” She’s not a prodigy. She’s a child with Down syndrome who has been given the opportunity to achieve, and—like most of us in the world—when given an opportunity, she rises to meet it. I don’t mean to suggest that she, or anybody, will achieve every opportunity that’s presented, of course. But it’s rare for any of us to achieve without being provided with the space, the support, and the belief that make achievement possible.

Maybelle is one hell of a reader. I am incredibly fortunate to have friends who are speech therapists, early interventionists, and scholars of Down syndrome. These folks told me about high expectations and helped shatter my stereotypes about Down syndrome. I think about the eight-year-old that my friend is working with. His parents probably followed the advice of the authorities at the school, who perhaps haven’t been doing their jobs all that well and haven’t learned that full inclusion in typical classrooms is almost always recommended for kids with Down syndrome. I’ll bet good money that, if given the opportunity, this child would learn to count, to read, to perform fairly well in an inclusive classroom with his same-age peers. But if he isn’t provided with that opportunity, he isn’t going to achieve.

Thirty years ago educators believed it was impossible for people with Down syndrome to learn to read (click here if you want to hear some of my reflections on this). It’s long past time for our false beliefs and low expectations to be sad relics of an era we’ve moved beyond.

Update from Alison: I very quickly got feedback from several people about this post that has made me want to apologize and clarify. I’m sorry to imply that kids–any kids, with Down syndrome or not–should be performing in a certain way if they’re getting the “correct” opportunities. All kids are unique individuals, and their strengths and challenges are going to be specific to them. This of course has nothing to do with Down syndrome: some kids are going to be readers, some kids are going to be athletes, some are going to have artistic sensibilities, some are going to have the knack for fixing things that are broken, some are going to be beautifully attuned to other people’s emotions. Etc. And these strengths will emerge at various times in their lives. I know about one kid who really didn’t read at all until the Harry Potter books came out, and then–as a teenager–he learned to read, and loved to read.

I want us to live in a world with high expectations and lots of opportunities for all our kids. And I want us to appreciate our kids for their gifts, whatever they are, and whenever they emerge. You’re right to be skeptical of my assessment of the eight-year-old I haven’t met: a child’s ability to count, or speak, or read isn’t evidence of lack of opportunity. And it’s lack of opportunity that’s my concern, not the individual gifts and talents of any particular kid in the world.

Again, I apologize, and I appreciate the feedback!

Guest poster Amber Cantrell is a student at the College of Charleston, majoring in Women’s and Gender Studies.  The research project she discusses is partially funded by a Student Undergraduate Research Fellowship from the College.

Although this might be somewhat disappointing, rather than Alison Piepmeier authoring this blog post, it is in fact her undergraduate research assistant. However, I am writing a lot about her, so perhaps that will be a small consolation prize. My name is Amber Cantrell, and I’m a junior at the College of Charleston eagerly benefiting from working with a feminist scholar like Alison.

This summer Alison and I are working on a project about prenatal testing. Initially, we’d thought prenatal testing was going to be one chapter in Alison’s book project about the intersection of feminist disability studies and parenthood. As we’ve begun to explore all the different topics that Alison and I find interesting about prenatal testing, the information gathering stage seems to have exploded rather than becoming focused and topic specific. As the person who is primarily doing the research that Alison requests, I have delicately pointed out that this chapter on prenatal testing may really a book project on prenatal testing.

Our plan for the summer was to talk with parents of children with disabilities, particularly Down syndrome, because we wanted to hear their stories. How did prenatal testing function as part of their pregnancy, if at all? How did these prospective parents make their decisions about prenatal screening, diagnostic testing, and potentially terminating their pregnancy?  In particular, what sorts of narratives—stories from their doctors and families, stories from pop culture—shaped their decision making processes?  These questions are intensely personal and potentially upsetting to those who might have chosen to terminate a fetus that they had anticipated with excitement until they found out about a particular disability. Alison and I hoped we could secure 12 interviews, but we thought this might be ambitious; we thought that perhaps only a few people would consent to talk about their stories.

When Alison contacted some of her own friends and acquaintances as well as posted our interview request on her blog, we received 9 responses in the first 24 hours. Within the next 12 hours, we had our total of 12 people who had contacted us with their desire to participate in this project.  And people keep responding.  People who Alison has never even met have agreed to be interviewed—people from around the country, some who are living happily with large families, some who are dealing with the death of a child with disabilities, some who are pregnant again and considering testing from a new perspective.

Their generous willingness to talk about their experiences is something that Alison and I are finding overwhelming (in a good way).  Why do so many people want to be a part of this project?  We think this is evidence that we haven’t developed a cultural space for women and their partners to talk about prenatal testing, which many have come to consider an inherent part of pregnancy. As a society, we need a space to grapple with the implications of choice and what it means, especially when statistics show that upwards of 85% of pregnancies with Down syndrome are terminated.  Alison and I are both pro-choice feminist scholars, but we recognize that although the word “choice” implies something easy—a quick decision—in the case of prenatal testing and disabilities, the process is anything but easy or quick.

We’re eager to hear these stories, to start collecting and examining the complexities and paradoxes that these parents are sharing.

A blog-friend (i.e. someone I know only because we read each other’s blogs) posted this last night, and I had a look. It’s a post about the fact that PBS News Hour has started a six-part series called “Autism Now,” and the series was at least partly inspired by the fact that host Robert MacNeils’s grandson Nick has autism.

After watching the first part of the series, I shared this with blogger Melissa:

Okay, so here’s a quick comment based on having watched only a tiny bit of the PBS clip. It troubles me a bit how autism is framed here as (mostly? entirely?) a medical condition–worse, as a medical problem. It strikes me as troubling, like Nicholas is now defined not as a person but as a used-to-be-person-now-tragedy.

The clip starts by explaining that they’re going to explore “how Nick was transformed from that healthy boy to Nick today.” Nick’s mom, Alison MacNeil, describes seeing a very young Nick exhibiting behavior that is often affiliated with autism. “I had this sinking feeling in my stomach,” she explains, “because I knew something was wrong.” At one point MacNeil interviews his granddaughter, Nick’s ten-year-old sister, and she shares with him, “I hope that [Nick] gets healed soon.”

MacNeil notes his own painful feelings at the challenges he has in connecting with Nick. He frames his relationship with Nick as strange, so different than his relationship with his children and other grandchildren. These are valid feelings for MacNeil himself to be grappling with, but the show seems to suggest that the pain results from Nick’s “abnormality,” not from MacNeil’s need to reframe his expectations for his grandson. Further, he describes his admiration for his daughter and son-in-law’s “patience and courage,” and he seems impressed that his son-in-law comes home from work every day and spends 90 minutes riding the bus with Nick. The show, then, seems to be characterizing autism in two ways: as an illness that must be understood by medicine and healed, and as a tragedy, a tragedy that makes the parents heroic. Nick isn’t okay as he is today. He’s not normal. He needs to be fixed. Thank goodness that Alison and Dave are so patient and courageous.

As I wrote to Melissa, I find this troubling. I don’t have a child with autism, so I can’t speak to that experience on a personal level, but this show strikes me as participating in the sort of dehumanizing rhetoric I often see in public discourses around children with cognitive disabilities.

As good timing would have it, I watched the first part of the series last night, after I got home from a graduate class in which we’d been talking about autism. We were discussing public representations of autism and the cultural work various representations are doing. We had a look at Ari Ne’eman, the first openly autistic Presidential appointee ever. In an interview with Wired magazine, he advocates neurodiversity, a framing of autism and other cognitive disabilities not as deficiencies, defects, or tragedies, but as different ways of being. He explains,

There’s a strange idea out there that neurodiversity advocates think that autistic life is all flowers and rainbows, but I don’t know anyone who thinks that way. Most of us have had deeply personal experiences of social isolation, bullying and abuse, lack of support, discrimination, and plenty of other problems. But it’s much more productive for us to focus on how we can improve people’s lives than to keep presenting people as pitiable burdens.

No more pity. It doesn’t help anybody.

Ne’eman has received a surprising number of hostile responses to his appointment to the National Council on Disability, responses that seem in part to be based on his perspective on autism. As one of the people in class last night observed, “Changing our culture to accommodate people with autism is much more immediate and pragmatic than all these efforts to find a cure for autism. Maybe that’s why it’s threatening: it’s saying that the mainstream culture has to change, rather than saying that people with autism have to be different, or disappear.”

I don’t mean this post in any way as an individualized critique of the MacNeil family. The family clearly loves Nick and advocates accommodations and support for him—and for them—and this show is certainly meant to raise awareness about autism. But the show itself strikes me as an example of how easily (even unintentionally) autism and other cognitive disabilities can be framed as tragedies to be mourned, and/or conditions that are unacceptable and need to be fixed. I’d rather see more public emphasis on neurodiversity, on changing our society so that we can accommodate and support as many different types of people as possible.

The peculiar drama of my life has placed me in a world that by and large thinks it would be better if people like me did not exist. My fight has been for accommodation, the world to me, and me to the world.

–Harriet McBryde Johnson, Too Late to Die Young

I’m gonna sit at the welcome table,
I’m gonna sit at the welcome table one of these days,
Halleluia!
I’m gonna sit at the welcome table,
Sit at the welcome table, one of these days.

–Traditional spiritual

“The Welcome Table” is a song that my daughter has been able to sign along with for months now. As many readers already know, Maybelle has Down syndrome. She was born in 2008, into a cultural moment that was ready for her in ways it would not have been even a few decades earlier. In one of my classes recently, a student shared that forty years ago, her sister was born and her mother was told to institutionalize her. A few decades later, shortly after Maybelle was born, I was told, “The College of Charleston is starting a college program for people with intellectual disabilities!” It’s a very different world.

And yet it’s still a world in which many people have a hard time seeing my daughter as fully human, and a world in which many people believe they ought to have prenatal testing so they can be sure their pregnancies won’t result in the births of people like Maybelle. As Harriet McBryde Johnson notes, it’s “a world that by and large things it would be better if people like me [and Maybelle] did not exist.” I know that the stigma surrounding—and, indeed, creating the meaning of—disability persists. I’m aware of it now in a way I wasn’t before Maybelle entered my life. Watching her sign this song recently, I felt how much I want Maybelle to be part of a community where, as one young feminist scholar puts it, “We [can] bring our whole selves to the table.” I want her to sit at a table where she’s welcomed, recognized as a valid and valuable person, and fully included.

I’ve just finished teaching Johnson’s memoir, Too Late to Die Young. Every time I read this book new parts jump out at me, and as I prepared for class last week, the passage quoted above got caught in my head and hasn’t left. Johnson explains that her “fight has been for accommodation.” She makes this point as she recounts an extended dialogue with Peter Singer, a philosopher who argued—kindly, but distressingly and persistently—that people with disabilities, people like Johnson, live lives that are “worse off” and therefore they should be eliminated before (or shortly after) birth, or allowed to commit suicide later. When many of Johnson’s activist cohort criticize her for talking with Singer, she notes that he’s not any more a monster than most of the people she encounters in her life.

One of the moments of real controversy to disability activists is when Johnson sits down beside Singer for a meal. This is during her visit to Princeton, and they dine with students who ask Johnson questions about, essentially, why she deserves to exist. At one point Johnson’s elbow slips, and she’s unable to feed herself. She needs an adjustment. She writes, “Normally I get whoever is on my right hand to do this sort of thing. Why not now? I gesture to Singer. He leans over and I whisper. ‘Grasp this wrist and pull forward one inch, without lifting.’ He looks a little surprised but follows my instructions to the letter.” Some disability rights activists saw this as a flawed endorsement of the humanity of a genocide advocate. Johnson, though, recounts this moment in her book with a kind of wry tenderness.

Interestingly, Singer himself reminisces about their meal, and about his assistance to Johnson, with a similar tenderness in the eulogy he wrote about her for the New York Times. He writes that Johnson’s description of their meal “suggests that she saw me not simply as ‘the enemy’ but as a person with whom it was possible to have some forms of human interaction.” And he identifies her as a person whose “life was evidently a good one.” What happened at their meal was that Johnson brought her whole self to the table, and by doing so, she endorsed Singer’s full humanity, as well. Having a meal together, sitting side by side at the same table, made that possible.

Early in my career at the College of Charleston, Johnson sent me an email, alerting me to the fact that the Women’s and Gender Studies Program I was directing was hosting an event at a venue that was inaccessible to people using wheelchairs. I was a good enough feminist that I recognized the need for a basic level of accommodation, so I made the change. It was a first step for me, a moment when I committed to spaces that were accessible: we’ll have plenty of tables for everybody!

Now, six years later, I’m moving beyond that initial understanding of accommodation. I want accommodation to mean that we are reimagining our communities in significant ways, that we are conceiving of our world as made better—richer—more wonderful by the inclusion of all kinds of diversity, including the diversity of physical and intellectual disabilities. I want us to bring our whole selves to the table, one table that everyone has the chance to sit at, a table where we’re all truly welcome.

Tomorrow I meet for the second time with the undergraduate class I’m teaching this semester.  The class is called Disability, Power, and Privilege, and it’s about feminist disability studies.

During our first meeting we talked a bit about the rhetoric we use where disability is concerned.  I expect—and I’ve told them so—that we’ll all say things over the course of the semester that others in the class may find troubling or offensive, so it’s everybody’s job to assume that we’re all doing our best, and to call us out when we do wrong.

While this attention to rhetoric—people first language, for instance—is old news in disability studies and disability activism—indeed, in any of the civil rights movements of the 20^th century—it’s important for my students.  And not just my students:  over the last several months I’ve been reading memoirs written by parents of children with disabilities, and one of the things that’s surprised me has been the frequency with which the term “retarded” appears in these memoirs, even in memoirs as recently published as 2009.

It’s a term that a number of disability rights organizations have targeted.  The Associated Press stopped using the term in 2008, and in 2010 legislation was approved that removed the term from all federal documents, replacing it with “intellectual disability.”  And yet it keeps being used, not only in memoirs written by authors who ought to know better, but by professionals I interact with on a daily basis.  The most recent occurrence was last week, and the person who referred to a question as “retarded” was someone who deals with diversity on a regular basis.

In his book Life As We Know It (1996), Michael Bérubé offers a clear and compelling refutation of this word and its cultural meaning.  Because of the word’s familiarity, and the ease with which it continues to permeate conversations in 2011, I’ll offer you—as I’m offering my class tomorrow—an excerpt from Bérubé:

But you know, there really is a difference between calling someone a “mongoloid idiot” and calling him or her “a person with Down syndrome.”  There’s even a difference between calling people “retarded” and calling them “delayed.”  These words may appear to mean the same damn thing when you look them up in Webster’s, but I remember full well from my days as an American male adolescent that I never taunted my peers by calling them “delayed.”  Even for those of us who were shocked at the frequency with which “homo” and “nigger” were thrown around at our fancy Catholic high school, “retard” aroused no comment, no protest.  In other words, a retarded person is just a retard.  But delayed persons will get where they’re going eventually, if you’ll only have some patience with them. (26)