Body Language

On my other blog, I recently posted a review of the book Origins:  How the Nine Months Before Birth Shape the Rest of Our Lives (Annie Murphy Paul, 2010). I wasn’t particularly fond of the book.  It offers an overview of research being done in the last few decades to determine fetal origins, or the ways in which people are affected—perhaps for generations—by what happens during the time that they are gestating.  Despite the author’s good intentions, I found it to be a troubling book.  As I recounted in my review, even as a woman who isn’t pregnant, I felt uncomfortable reading, like I was being indicted for not being careful enough while I was pregnant, back in the day.  While Paul acknowledges the danger of this research being used to bolster already culturally prevalent “mother blame,” she frames her work in the hope that it can provoke broader cultural change and positive evaluation of mothering, from the point of conception onward.  I said I didn’t think it worked, and that I did, in fact, feel blamed.

What I wanted to talk about here is not my review but the comments it received.  I’ve had a number of responses, and the thing that’s interesting is that many have been lengthy.  Folks haven’t just been weighing in—”I disagree!”—but offering counterarguments or lengthy explanations of how fetal origins research is or isn’t valid.  Some have been arguments based in personal experience, others have been based in professional expertise (medical anthropology, for instance, or anesthesiology).

So my question is, why did this matter enough to readers that, in responding, they essentially wrote blog posts of their own?

I think the answer is that parenthood is a high stakes endeavor, particularly for the middle-class (overwrought?) parents cohort I belong to.  More specifically, motherhood is a high stakes endeavor—and I say this with all respect to my partner, who is an outstanding father to our daughter, but who doesn’t face the pressure that mothers routinely face.

All of us who are in the realm of motherhood—either as parents or as scholars of motherhood—know this.  The internet is full of jokes about “mompetitors” that friends regularly send me.  This piece from Salon maps out the topics you simply can’t discuss, and it’s not wrong:  breastfeeding, attachment parenting, the family bed, and crying babies are topics I’ve found to be so highly-charged that I’m incredibly careful about talking about them, even with very close friends.

The reason I read Origins is that I’m currently doing research into prenatal testing, and that’s another subject that’s so high stakes that many of us simply don’t talk about it at all.  When some of my friends have been pregnant, they haven’t shared the news until after they’ve had the amniocentesis that determined that this is a pregnancy they’re actually going to continue.  I’d hoped that Paul would discuss this aspect of our cultural assessment of the fetus, but she didn’t.  She did, however, share that many of the studies base their assessment of prenatal health on postnatal IQ scores, a fact that I found very troubling.

We’re raising kids in a culture that’s perfectionistic and that seems to believe, by and large, that we—as mothers—are always wrong.  If something “bad” happens involving our child (such as short attention spans, low IQ scores, or asthma), it’s our fault.  Since we’re already pummeled with this viewpoint, scientific research that says, “And it’s true while the baby’s in utero, too!” isn’t necessarily helping matters.  This isn’t to say that the scientific research is or isn’t valid.  I’m not a scientist, and my skepticism about some of the studies Paul reports on isn’t definitive.  What I’m saying is that this science is emerging from and feeding into a culture that has some very troubling, individualizing, and sexist views.  I think my readers are attuned to that culture, as well, and it makes all of us a bit defensive.

This month’s guest column is by Dr. Sheila Moeschen, an academic, writer, and Public Communications Consultant. For more of her writing, visit: www.citizendame.com. She currently resides in Boston.

The first time I saw the Gap ad for the skinny black pant starring the iconic Audrey Hepburn I was on a treadmill at the gym. The irony of the moment was not lost on my not-so-skinny thighs and me as we plodded along the motorized sidewalk to nowhere.   Released in the fall of 2006, the ad uses footage from her 1957 film Funny Face and shows Hepburn, decked out in a black turtleneck and black, form fitting chinos, rehearsing a modern dance number.  As the badass riffs of AC/DC’s “Back in Black” play, Hepburn kicks, minces, and twirls lithely across the screen.  For Gap, it marked the re-launch of their skinny pants, for the rest of us it announced a new era of fashion: skinny fashion.  The pants flattering Hepburn’s adorable, minx-like figure represented an unreachable brass ring to those of us carrying curves and the baggage of sugar binges gone by.  The notion of catering to a (excuse the pun) narrow population of individuals seemed additionally ludicrous. What woman in her right mind, I wondered, would subject herself to the same kind of physical, fashion bondage suffered by her corseted or foot-bound ancestors? Who would deliberately participate in the tyranny of skinny fashion?

The answer: a lot of women. Four years later the skinny fashion trend remains firmly entrenched in the racks of couture boutiques and mainstream outlets alike.  Gap’s skinny pant gave way to skinny jeans, which birthed skinny lyrca denim, known as “jeggings,” which helped to bring back stretchy, cotton leggings, the kind sported by late-80s teen sensations Debbie Gibson and Tiffany.  Though designers have created skinny clothing lines for men and women, it is women’s figures that manufacturers have in their crosshairs.  Correction, make that women’s and babies’ figures, as Gap recently released a line of skinny denim for its Baby Gap stores. It seems clear that skinny fashion constitutes another way manufacturers participate in colonizing women’s bodies.  By transforming a wardrobe staple—denim—to an unrealistic and even sadistic silhouette, designers systematically shift consumer perspective to the skinny line as both desirable and normal.

What is less clear is the way this fashion trend shapes ideas about more than just standards of idealized female physicality.  Feminist theatre historian Elizabeth Wilson writes about the ways in which fashion takes on political and ideological significance.  “Fashion,” Wilson states, “links the biological body to the social being, and public to private. This makes it uneasy territory, since it forces us to recognize that the human body is more than a biological entity. It is an organism in culture, a cultural artifact even, and its own boundaries are unclear.”

The popularity of skinny fashion belies another story about the current enculturation of the female body.  It is a narrative that speaks to women’s continued restriction and constraints during a historical period where women have made abundant economic, political, and social gains. Skinny fashion highlights the intersection of the biological and the cultural bodies as Wilson points out, ultimately presenting a depiction of women in crisis: they are asked to support a culture of thinness and health; they are sexually empowered but also subjects of sexual double standards; they wield tremendous power and influence on the world stage and yet must answer to charges about being “too feminine” or “not feminine enough.”  It is no wonder that women take some form of misplaced comfort in fashion that leaves nothing to the imagination, that puts the body in a clear delineation of terms: attractive or not attractive, fit or unfit, Hepburn-esque or everyone else.

Body Language proudly presents July’s guest writer, Laura Maffei. She is the author of the poetry collection Drops from Her Umbrella (Inkling Press 2006) and founder of the journal American Tanka. Her current project is a memoir called Girl with a Secret, or How I Tried to Hide Muscular Dystrophy with Tight Jeans and Makeup and she blogs about issues of appearance at lauramaffei.com.

When I was twelve years old, in 1980, I was diagnosed with muscular dystrophy. There weren’t really any visible symptoms yet, but the disease was progressive and eventually there would be. During the car ride home, my mother turned to me in the back seat and said, pointedly, “We’ll only be telling Aunt Nancy and Uncle Joe.” These were our closest relatives. What she meant was, we would not be telling anyone else. She was telling me to keep it a secret.

My parents made this decision mostly out of protection. This was, after all, long before the Americans with Disabilities Act, and they didn’t want me unnecessarily labeled at school. But there was another side to it. My family cared deeply about appearances, my mother in particular. None of us, my father included, were allowed out of the house for any reason without being freshly washed and combed, wearing freshly ironed and color-coordinated outfits. We were also expected to look dignified and graceful at all times.

There was one other layer. I was a girl. I think a boy would have been told to keep it a secret too, for general appearances’ sake and to avoid discrimination, but a boy, you see, could win his mate with his earning power, if he worked diligently enough. Which he would be expected to do (both work hard and find a mate), since we were a traditional and conservative Italian-American family with one foot still in the 1950s. When I was born in 1967, aunts, uncles, and grandparents all placed bets on what age I would be when I got married. The bets ranged between 19 and 24, with one uncle betting “never” because I’d be a career woman. One could not be both, because then how could you cook or clean for your husband and children? And yet one was definitely expected to marry.

And marrying required being attractive. While I was encouraged to study hard and go to college, it was always made clear to me that being attractive was essential, and that “attractive” meant very specific things: A slim figure with a flat stomach. A face covered in foundation, blush, eye shadow, and mascara. (From the age of 13 I was encouraged to wear makeup every day.) Certainly not a disease that would cause my lower stomach to protrude from weakened abdominal muscles and cause me to walk with a labored gait that made people glance at me when I went by.

I had to hide it as best I could, and for a while I found various ways, like super-control-top hosiery and lying to the gym teacher about how many sit-ups I did. I refused to answer questions about it, especially from men I dated. Because yes, insanely, I kept trying to hide having muscular dystrophy well into adulthood, long after it became ludicrous to try to hide the obvious fact that I had a disability, that my body wasn’t the perfect one I thought I had to have in order to be acceptable.

Which is why, even though my story is specific and a little bizarre, I see it everywhere. It’s the same old story, really: girls and women trying to conform to what the culture tells them is physically acceptable, and feeling shame if they don’t. I see it when a friend won’t take her cover-up off at the beach in 95 degrees. I see it when the students I teach totter across the stage during an awards ceremony in stilettos that are hurting them (and, in one case, fall down the stairs). I see it when a woman in a mirror in a public bathroom experimentally pulls her skin back tight from her face.

What is the solution? For me, two things helped somewhat: learning how to draw, and hanging out with a group of smart, funny, earth-worshipping Wiccans while I was in my twenties. The Wiccans showed me that everyone, EVERYONE, was perfectly acceptable whatever their face or body type. Drawing, with its requirement of intently caressing with the eyes every shape and shadow of a person’s face and figure, showed me that everyone is beautiful.

Not that I don’t still cringe at times, when I see myself unexpectedly reflected in a store window and I don’t conform to the image I was brought up to believe was the only one that was acceptable. We all have to keep finding our way, slowly, out of the morass of arbitrary decrees that tell us what we’re supposed to look like, and what we’re supposed to hide.

I’m always highly attuned to language—its nuances, implications, and effects—so much so that my partner is ready (if not always eager) on at least a weekly basis to hear the latest term or phrase that I find problematic.  So here’s the latest:  I’m troubled by the metaphors of battles, wars, fighting that often get linked to people with diseases or disabilities.

Two nights ago I was watching Extreme Home Makeover.  As a side note, let me warn you never to watch this show unless you just want to sit in front of your tv weeping while simultaneously being vaguely embarrassed at yourself for doing exactly what the show’s makers want you to do.  That pretty much describes my evening.

There are many, many problems with this show that other bloggers should feel free to launch into, but one of the things that struck me was the battle metaphors.  The father of the family whose home was being remodeled has ALS, a progressive neurodegenrative disease.  He seems like a genuinely wonderful person, with a great attitude and a passion for his family and his career.  Everyone who helped with the project of rebuilding this family’s house seemed moved by this guy, and repeatedly throughout the episode folks recognized him and honored him for, among other things, his “battle against ALS.”

This is, of course, a pervasive way of framing people with diseases of all kinds.  The ALS Association’s big statement at the top of every page on their website is “Fighting on Every Front to Improve Living with ALS.”   There are a number of websites devoted to fighting cancer, fighting HIV, cystic fibrosis, multiple sclerosis, etc.  The fight metaphor is often how individuals with these diseases discuss their own lives and priorities.  And yet, it gives me a small, uncomfortable twinge.

I’d be politically troubled or offended if someone had referred to the little boy in the Extreme Home Makeover family as “battling” his life in a wheelchair, or if people suggested that my daughter was “struggling against” Down syndrome.  Down syndrome and paralysis aren’t war zones, they’re simply parts of the lives of some people.  And yet diseases seem to be different, certainly to many who are living with them.  While Down syndrome has been part of Maybelle’s life since the instant she was conceived, ALS comes along later in life, and the fighting metaphor seems empowering and functional for many people.

But I’m not one of those people.  I think that much of why this bothers me is personal.  It’s not that I’m opposed to fighting.  I’m an activist:  I welcome a fight.  I’m happy to aggressively challenge many things in this world that need to be shaken up.  And yet, as a person with a brain tumor, I don’t want my health condition framed in terms of a battle.  I am not someone who’s “battling” a brain tumor.  Some scholars have examined this concept and have identified several ways that the metaphor is problematic—not only because it’s “inherently masculine, power-based, paternalistic, and violent” but because it frames the patient as the one who has to fight fight fight in order to win the war, and if they don’t win, then they didn’t fight hard enough.

I have a brain tumor, and there are things I need to do to take care of myself, but no level of armored-up embattlement is going to make it go away.  I don’t love it, but it’s part of my body.  As the scholars note, “There are conceptual weaknesses in the metaphor. There are no actual enemy invaders; the enemy is self…and the battlefield is the patient’s very body.”  I feel that I’d like a rhetorical framing of my condition that allows me a little more coherence and peace.

Fortunately, I’m very happy with my house, so there will be no need for the Extreme Home Makeover folks to come over here and cheer for my fighting spirit in order to make themselves feel better.

Editor’s note:  I promise that my next Girl w/Pen post will be about something other than my brain tumor!  You all have been very supportive, but I think it’s time for some variety.

At the end of December I learned I had a brain tumor. In February I had surgery to remove as much of the tumor as possible. In the time between those two events, and since, I’ve had an intellectual and emotional path to travel.

As I wrote about on Girl With Pen, one of the initial traumas of learning about the tumor was learning that it was located in the language center of my brain. The neurosurgeon was fairly certain that removing part of the tumor would affect my language skills. Numbers were tossed around: I could lose 10% of my language functions, or 20. I found myself agonizing over what those numbers meant, trying to connect them in some meaningful, concrete way to my own life. Could I write an academic article with 10% less language ability? Could I read the research written by my friends if I were 20% deficient? Would I be able to respond effectively to my students’ questions and comments in the classroom? One subtle undercurrent to this questioning was, Is it the right thing to do to have this surgery?

And then at some point in January, a plank I’d been standing on–let’s call it denial–dissolved beneath me, and I realized that the questions I’d been asking were important, but they were distracting me from the most important implication of this brain tumor: it’s fatal. If I didn’t have the surgery, I would die, and my daughter wouldn’t have a mother.

This realization quickly became all-encompassing. Maybelle is twenty months old–a baby, someone who still needs active parenting all day, every day. I started thinking ahead to other parts of her life: her first sentences, her discovery of what activities she loves, her best friends, her dating life. I want to be there. I can’t imagine not being there. But more importantly, she needs me there. The ambiguity disappeared. It became very clear to me that having the surgery was the right thing to do.

As I moved forward through this whole process, the intimate exposure to my own mortality made a number of things about parenthood clear to me. Before the diagnosis I might not have known this about myself, but I can’t tell you how grateful–powerfully, viscerally grateful–I was and am that I have the tumor and Maybelle doesn’t. Even pre-surgery, when all the fear was hanging over me, this realization was enough to add some buoyancy to my day.

I also discovered that I identify parenthood as a role–a commitment, a passion, a series of actions–and not as a biological category. It doesn’t matter that Maybelle is genetically related to Biffle and me; she’s our daughter because every day we are her parents. This was comforting, because I know that she is loved by many, many people, some of whom love her enough that they would step in to become her parents if she needed them to. It was a realization that also helped me to dedicate myself even more fully to my choice to be her parent. In the early post-surgery days, I could often only stay awake for a few hours, but I wanted those hours to be spent on the floor with Maybelle.

And yet recognizing my own mortality didn’t make my love for language disappear. In those early post-surgery days, if I had any awake time after Maybelle was asleep, I wanted to read and write, and I did: two days after the surgery I read my own blog, and two days after that I wrote a post. As it turns out, my language skills have emerged from the surgery almost just like they were before, and this is a great surprise and an unending source of joy for me.

So I’m not arguing that parenthood is the only thing that matters in my life. As I’ve told Maybelle many times before, and as I even told my neurosurgeon, I’m a much better mother when I’m working. I’m a better mother when I get to delve deeply into other life commitments and choices in addition to parenthood, and for me these are intimately connected to language. (The neurosurgeon responded, “My wife says the same thing.”)

I don’t have a neat summation here, an explanation of what I’ve learned and what this all means. My life has many points of connection to the planet, but whether I knew it or not, a few of them are more important than the rest.

This is Alison Piepmeier, recovering well from brain surgery, and planning to be back on Girl with Pen really soon.  In the meantime, I’m delighted to introduce you to this month’s guest columnist, Eliza McGraw, writer, mother, and great friend of mine.

Earache

I’m here in Charleston, South Carolina visiting my pal Alison Piepmeier, whom you all know from her blog here on Girl with Pen.  Theoretically, I am helping her, Walter, and Maybelle out, given Alison’s recent brain surgery.  And I am bunking with the baby and did just now make some pumpkin muffins, but I am not sure that I am helping as much as I am just, as always–we have been friends since 1994, when we met in graduate school, I just have avoided putting my education to the same kind of productive use that Alison has–enjoying being with Team Biffle-Piepmeier.

To be here for the week did, however, entail a thorough job of organization on my part.  I live in Washington, D.C., and am a freelance writer.  I also am the primary caregiver, driver, cupcake-maker, room parent, tutor and hockey mom to my 6 and 8-year-old children.  My days are happily complex so the list on instructions I left behind–also known as “the matrix”–included such entries such as “Wednesday–bring in a green food for St Patrick’s day,” “Thursday:  put Simon’s lacrosse shorts in backpack,” “Friday is P.E. day–Macie
in sneakers.”  It had a long list of contact information for the many family members, friends, and neighbors who knew I’d be away, permission slips for various pickups, and a refrigerator roll call so my husband Adam would know what I had made to eat.

On Monday, I received an email from Adam inquiring when the pediatrician’s office opened, since Macie (my 6-year-old) had an earache.  We’re not an earachey kind of family, as a rule–no tubes, no audiologists–so I was concerned.  Macie has also wound up in the hospital more than once, so any time she develops the slightest sniffle, I get a little anxious.  Also, it was only day two.  Things were already falling apart already?

Adam is an architect, and while it’s not as if he were expected in the OR momently, he was supposed to be at work with roll of drawings spread out on the desk (my mental image of architectural design), not heading out to the pediatrician’s.  If you looked at the matrix, there was no mention of “Take Macie to pediatrician.”  (If there had been, I would have written, “Remember insurance card and to stop for bagel on the way
home at bagel shop on Connecticut Avenue.”)

Even knowing that Adam, eminently competent and adaptable, had Earache 2010 covered, I felt like something was a little off all day as I played with Maybelle, went to the grocery store with Alison, and generally existed here in Charleston, 539 miles from the situation room at home.  When I called and heard Macie crying in the background (over Adam’s shouting from the front seat “She’s fine!  We’re going to get medicine now!”) I experienced that sensation that makes you realize why people say hearts “sink.”  Even once I received the update that Macie was at my mom’s and tucked under the same animal-themed blanket I used to curl up with when I felt sick (nosebleed stains, 1970s brown and orange zebras) while watching Mulan, I felt like I should have been with her.

But as the day wore on–hearing Macie’s voice be a tad bossy about which of the previews she deigned amusing enough to watch reassured me that her health was stabilizing–I realized I only sort of felt that way.  I missed her, and hated to think of her in any kind of pain.  But I was glad to be here, with Alison, Walter, and Maybelle.  I learned that is possible to be in the right place, even if that place is not with my own children for a certain painful moment, the one thing even I never planned for.

This month BODY LANGUAGE welcomes Suzanne Kelly, writing her first guest post for Girl w/Pen!, as she takes to heart the literal matter of body language.

Suzanne teaches in the Women’s Studies Program at SUNY New Paltz.

A few weeks ago, scanning The New York Times for something weighty, I fell upon feminist science writer Natalie Angier’s thoughtful retelling of a new study in the burgeoning field of embodied cognition. The study revealed how our ability to process information is not a function of the brain alone, but of language’s perpetual play with and through our bodies as a whole. Angier explained how when study participants were asked to think of a past event, for example, they consistently “leaned slightly backward,” and when they were asked to envision what was to come, “they listed to the fore… ”subliminally act[ing] out metaphors in how we commonly conceptualized the flow of time.”

That “the body embodies abstractions the best way it knows how: physically,” as Angier put it, that it literally “takes language to heart,” comes as no surprise to me. When I’m writing and it seems as if the words won’t budge, I’m also often crumpled up at my desk – legs tucked under, torso rounded. If I stretch, realign, and maybe go for a run, the flow usually returns. When my ideas are at their stickiest so too, it seems, is my body.

That our thoughts, however intangible, are more than the sum of what goes on inside our skulls is also hardly a revelation to those of us who have long positioned the body’s knowledge at the heart of feminist theory and practice. Still, studies like this (and brilliant writers like Angier who are skilled at bringing their importance to light) always give me hope, especially when they’re given voice by the mainstream media. Might this be a sign of a new legitimacy of the body, one from which feminism could no doubt benefit?

I have written elsewhere about the value of “the sensuous classroom,” of education that takes seriously the presence of the body. If our “bodies embody abstractions…physically,” as this study suggests, what do we learn, not only from our own bodies, but from being in and around the bodies of others? In thinking about the transmission of ideas and the potential for changing consciousness, what is lost, for instance, in teaching Women’s Studies classes on-line, engaged in conversations about bodies, while removed from each other’s? How do we significantly combat unattainable body images, or think seriously about questions of disability, when our bodies are not part of the venue?

These same questions hold for our activism, as well. Would consciousness raising groups have proved as powerful had they happened on cell phones? What did those women’s bodies communicate to one another that gave them the courage to leave unhappy marriages, end the cycle of violence, and love other women? That enabled them to fight for legal abortion, childcare, and better wages?

Because body centered issues remain central, if not heightened, feminist concerns today – from the image of the female body, to eating disorders and the foods around which they revolve, to abortion and contraception, to health and its care, to intimate partner violence, rape and sexual assault, and, of course, to sex itself – it seems more vital now than ever for us to place our bodies front and center, to give them substance in our conversations as well as in our collective actions.

Of course, as we speed toward a near-virtual future and as our physical distance from each other exponentially grows, it becomes more of a challenge to find ways to speak, to share, to formulate conversation, to engage thought and transform it into action – in the flesh. But we can do better.

No doubt, our bodies know it.

Over the holidays I had several seizures, which led to me being diagnosed with a brain tumor. It’s a low-grade glioma, which is the good news. It’s smack-dab in the middle of the language center of my brain, which is the bad news.

I tell you this in part to let you know why I might not be around for the next few months. I’ll be having brain surgery in February, and I expect at least six weeks of recovery, time in which I’ll be exhausted and may not be up for blogging. I hope to bring in some fabulous guest bloggers for those weeks.

The other reason I’m sharing this, though, is because having a brain tumor in the language center of my brain has raised a lot of hard questions for me, questions that relate to the theme of this column. I’m an academic, a scholar who writes books and teaches classes. I’m the mother of a young child who is doing great but who needs more help, intervention, and encouragement than a typical child. My Ph.D. is in English. I have been a ravenous reader and passionate writer since I was a little, little kid. Potential damage to the language center of my brain feels like something that threatens the heart of who I am. Who will I be if I don’t have the fluency or facility with language that I have right now? I’ve been poking around in the academic world of disability studies for the last several months, but this diagnosis brings disability even more intimately into my life. It’s not only someone I love who’s experiencing life with a disability (my daughter); it may well be me.

Indeed, no matter what the long-term effects are (and the prognosis actually looks quite good), I certainly will be living with disabilities for the weeks and months immediately following the surgery, as I’ll have brain swelling that will lead to some language difficulties and motor function challenges. I’ll have a kind of insider’s perspective on disability.

Who will I be? It’s an academic question as well as a deeply personal one. I can go around and around in my mind, wondering–imagining what it would be like not to be able to talk off the cuff about feminism with the same ease that I do now, or to hear a sentence and not to be able to understand it immediately.  These aren’t effects that the neurosurgeons have promised; in fact, one of the frustrations has been that they can’t tell me much.  We’re very much in a wait and see mode.  One friend pointed out that this may be a great opportunity for me to learn that who I am is not the same as what I do, but she was quick to add that this life lesson is no justification for a brain tumor.

It’s really weird for me to think about so many characteristics of my life—characteristics which in some way feel transcendent or inherent—as being tied to a physical organ. It gives body language a whole different meaning.

As a Women’s and Gender Studies faculty member, I’m hyper-attuned to representations—of beauty, of consumption, of masculinity—in the world around me.  As the parent of a daughter with Down syndrome, I’ve become equally attuned to representations of people with disabilities.  Now that we’re well into the holiday season, I’ve been interested to see how children with disabilities appear in all the holiday-themed programming and advertising, if they appear at all.

The big problem is that kids like my daughter rarely show up at all in mainstream media.  Holiday specials pass by, one after the other, and my husband and I find that we’re searching increasingly desperately for disabled characters.  “Oh,” I said the other day while listening to the Muppet Christmas CD, “I think Animal is a person with special needs!”  He doesn’t speak clearly, he obviously has some behavioral challenges, including difficult controlling his emotions, but he’s a beloved and valuable member of the rock band Dr. Teeth and the Electric Mayhem.  It’s occurred to me that we may be able to use Rudolph as a role model in the future, as well—his community initially interprets his difference as abnormal and undesirable, but they come to see it as a talent and a benefit.  But in terms of actual human beings, the representational terrain is fairly bleak.

There are exceptions.  Toys R Us, for instance, has a catalog specifically for kids with disabilities—kids that they kindly, but awkwardly, call “differently-abled.”  Whoopi Goldberg and a child with Down syndrome are on the cover, and all the toys in the catalog feature kids with various disabilities playing with them.  The toys are described in terms of their educational and/or therapeutic potential:  for instance, the Fisher Price “Go Baby Go! Crawl-Along Drum Roll” is marketed as providing gross motor, tactile, auditory, visual, and thinking stimulation.  I do appreciate that, since Biffle and I are eager for Maybelle’s playtime to be stimulating, and we are often on the lookout for toys that will help her in one or another of the areas we’re working on in therapy.

But the fact that kids like Maybelle only appear in the “differently-abled” catalog is distressing.  These kids are all in their own catalog, even though all the toys are the same as the ones in the regular Toys R Us lineup.  As one of my colleagues pointed out, “If you want to know who a society doesn’t value, look at who they segregate.”  So, while I’m very glad that Toys R Us is documenting the existence of disabled kids—not just kids with Down syndrome but those with autism and a range of physical disabilities, as well—I do wish that these kids were fully included in all their marketing, so that their catalogs would help make these kids’ full inclusion in society at large seem normal, desirable, even unremarkable.

By now you might have heard that the popular TV series Glee recently aired an episode entitled “Wheels,” which was all about disability. It was a mixed bag. For the most part it was better than the sorts of cloying, sentimentalized depictions of disability on television–shows often advertised as “a very special Punky Brewster” (or whatever).

The main premise is that one of the regular characters, Artie (played by Kevin McHale), uses a wheelchair, and is going to have to find his own way to a glee club competition because the school district doesn’t have any accessible buses. The episode starts with Artie being framed by an individualized rhetoric of triumph over adversity–Artie is used to overcoming obstacles, Artie doesn’t mind–but it quickly undermines these messages. Artie does mind, and for most of the show the nondisabled glee club members are required to get around in wheelchairs. This of course is a learning experience for them, and it has the effect of visually challenging the normality of bodies not in wheelchairs for the show’s viewers. The show ends with a wheelchair dance number that’s nicely done, and is a lot of fun.

So there are good things about this show. But I had a number of problems with it, too. The most obvious problem is that it became the disability episode. Not only do we have Artie and his wheelchair, but we have two characters with Down syndrome. And while I am delighted to see actors with Down syndrome on any mainstream TV show, these two characters were used in problematic ways. The first, Becky Johnson, played by Lauren Potter, tries out for the cheerleading squad and is accepted. The good aspect of this is that she’s pushed really hard by the coach, who says that Becky wants to be treated like the other cheerleaders: she refuses to coddle her because of her diagnosis. The bad aspect is that she’s terrible, just terrible. She can’t do even the most basic things that the rest of the squad does.

And the worst aspect of the inclusion of the characters with Down syndrome is that they’re ultimately used, as the New York Times Arts Beat blog argues, “as a prop in the continuing humanization of [cheerleading coach] Sue Sylvester.” We find out that the coach let Becky onto the squad because her older sister (played by Robin Trocki) has Down syndrome, and we find this out when Sue visits her sister and reads her Little Red Riding Hood. Again, a mixed bag: many folks in the world have people we love with disabilities, and it’s nice to put that message out there. The scene with Sue and her sister was trying to be very loving and affectionate, and it sort of worked, but sort of verged into that cloying, a very special Glee kind of place. Is it sweet that Sue was reading her sister–her older, very clearly adult, sister–Little Red Riding Hood, or was it infantilizing of the sister for the sake of making Sue seem sweeter?

Ultimately the show can’t fully escape from the individualized triumph over adversity rhetoric that permeates a lot of mainstream treatment of disability. Near the end of the show, the character Kurt, as part of another plot line, tells his dad, “Being different made me stronger.” In some ways this is the message that the show leaves with its viewers, and it’s a message I have strongly mixed feelings about.