Freaks and Weirdos: On Walking Straight, Walking ‘Normal’

“Walk straight!” my mother commands.  I’m only eight years old, trudging through the shopping mall with my six-year-old sister in tow.  I catch my breath at my mother’s disciplining, let out a soft sigh and roll my eyes.  “Brooke, did you hear me?” she complains.  I keep walking, and for a minute I straighten out my feet, spine, and shoulders into what I have been told is a proper posture, a “normal” way of walking.  Just for a minute, to appease my nagging mother.

My dad tells me a different story.  People who are pigeon-toed are fast runners, and fierce athletes.  I embrace this narrative as an eight-year-old, and take the initiative to out-run any boy at school.  Girls rule and boys drool.  Even my neon-green t-shirt says so.  I play tag-football at recess, and I relish during the elementary-school-wide Field Day.  When I run, I let my legs be as pigeon-toed as ever.  And I even earn a first-place ribbon for it in the fifty-yard dash.

Do I ever trip over my own feet?  Sometimes, yes.  But as a kid, whose dad says it’s cool to be pigeon-toed, I take pride in tripping over my own feet.  I learn to laugh at myself.  Let the self-tripping commence!  I’d rather trip over my feet with an audience than waste my concentration and discomfort on walking straight.

“Walk normal!” my mother shouts.  She switches between saying, “walk straight” and “walk normal.”  According to her and the use of their seeming interchangeability, the phrases are synonymous: walking straight means walking normal.  And walking “normal” is apparently the desirable gait.  “Brooke, I said walk normal,” she reinforces her demand.  This time we are at the grocery store, and I am feeling disobedient.  I keep moving along, pretending like I can’t hear her, and collecting coupons as we stroll down the aisles.  “Did you hear me?” she repeats.  “Come on, you walk like a slob.  Pay attention.”

My dad signs me up for soccer and softball.  I build strong quadriceps and hamstrings.  I go to a summer soccer camp the year I turn nine, and the professional trainer immediately notices the uniqueness of my stride.  I stand out in the group, literally and figuratively.  She teaches me to use my pigeon-toedness to an advantage.  I train hard for a quick, skilled touch to the ball.  I have a mean outward cut, thanks to my pigeon feet—perfect for fake-outs.  And best of all, I learn to kick the ball with the outside of my foot.  Imagine a penalty kick, in front of the goal: the keeper notices I am right-footed and expects me to sweep it across into the left corner.  But my pigeon-toed outside-of-the-foot kick curves it unsuspectingly into the opposite right corner.  Solid shot, like a line drive, slightly curved.  Goal keeper left stunned.  Ever heard of “bend it like Beckham”?  That’s me.

Third and fourth grade pass by, and I’m the class tomboy.  I only wear boy clothes, even boys shoes.  My mom thinks “it’s just a phase.”  If that’s what’ll keep her off my back, then let her think what she wants.  I run amok on the playground each day happy to be picked in the first few by my fellow male team-captains for our kickball pick-up game.  Most of the girls frolic on the swing-set, perform cartwheels through the dry, yellow Sonoran desert grass, or play jump-rope.  Cartwheels and jump-rope set me apart from the other girls—I was never very good at gymnastics or dance, my legs could never plié.  In fact, my legs are capable of quite the opposite.  The few who knew about my amazing inward-turning feet talents would run up to me on occasion, dragging their new friends along.

“Show Sarah how your feet turn in!” Jamie requests excitedly.

“Okay,” I act in accordance: and inward my legs go, my feet nearly facing backward.

“You’re a freak of nature!” Sarah exclaims.

“Yep,” I agree.  And I get back to playing kickball while they scurry off in giggles.

I am ten years old, in the fifth grade.  The drive to the orthopedic surgeon’s office in downtown Phoenix is far from the North Phoenix suburban neighborhood my mom takes pride in raising me in.  Born and raised in a working class Jewish neighborhood in Chicago, she’ll do whatever she must to provide her daughters the socioeconomic privileges of middle class status.  The drive is daunting: my neurotic mother schleps me along, as I am resistant to go.

“Maybe the doctor can fix your feet,” she says from behind the wheel.

I shrug my shoulders, say nothing, and continue staring out the front passenger window of the SUV.  I am truly at a loss for words.  The ambivalence is too stark—one thought process feels a sense of relief at the notion of being “fixed.”  The other thought process, the feeling in my gut, wrenches at the idea.  My mom keeps talking.

“You know, your sister was born pigeon-toed, too.  By then the doctors had come up with corrective baby feet braces.  She wore them the first two years of her life.  They didn’t have anything like that for you, though,” she explains.  I already knew the story; she’s recited it to me countless times.  I even know where she keeps the baby-feet-brace mementos: in the special storage box high in the downstairs closet.  I often sneak down there, climb up into the box, and look at the little braces.  I hold them in the palms of my hands and wonder why science had failed me at birth.

“I know,” I respond to her recitation.  My words to my mother are often short and abrupt.  We pull into the parking lot; the office building is stacked with dark red bricks and has a fountain flowing in the entrance.  No matter the desert drought we’re experiencing.  I pass through the automatic doors, and a whoosh of icy air conditioning slides across my neck.

X-rays—we need x-rays!  The official science technology will authorize the pathologization of my pigeon-toedness.  Was there Latin terminology to name my pending diagnosis?  Certainly there is!  According to the U.S. National Library of Medicine and the National Institutes of Health (very authoritative and all-knowing, omniscient institutions of knowledge production), Metatarsus adductus (MTA) is a foot deformity: the bones in the front half of the foot bend or turn in toward the body.  Deformity? According to my dear friend Merriam-Webster, deformity means: imperfection, blemish: as A) a physical blemish or distortion: disfigurement, and/or B) a moral or aesthetic flaw or defect.  The language at hand reflects how the medical model negatively classifies nonnormative bodies as unfit, defective, or abnormal.  Bodily variations that do not meet standard ableist criteria are viewed as having something intrinsically wrong them that need to be cured.  And yet, the transparent knowledge of x-rays will report my MTA to be more “severe” than this standardized definition suggests.

The nurse practitioner leads me through the maze of hallways to what appears like a series of dressing rooms in a department store.  She slides a curtain open and invites me to step inside.  Her instructions: strip naked, put your clothes in the cubby, and wrap the gown around your body.  Am I complicit in the medicalization of my beloved pigeon-toed legs?  At age ten, I’m only doing what my mother says is best, and what the nurses officially know how to do.  Besides, seeing my own bones against the bright x-ray screen is fascinating and surreal.

Diagnosis: pigeon-toed from the hip down.  Whereas MTA is commonly in the feet and ankles, my legs are entirely turned inward from top to bottom.  First opinion: corrective surgery at the ankles.  This should fix the appearance of walking “normal.”

“So my legs would be turned inward but my feet would be turned outward?” I ask, slightly panicked.

“Yes,” the surgeon replies in his German accent.  “It would be far easier, quicker, and less painful of a procedure.”  Or, you mean, more economically profitable within your capitalist cost-benefit analysis?  Less risky under the choke-hold of private insurance companies?

“But what about sports?  Would this change how fast I run?”

“It’s hard to say,” he says coldly.  “I’ll let you two think about this for a moment while I step out of the room.”

I feel like ducking for cover.  How can I get out of this?  “I don’t want to do this,” I blurt out as my mom reads some pamphlets.  She is startled by my claim.

“Brooke,” she says sternly.  “What about when you’re walking down the aisle?  You don’t want to look like a slob at your wedding, do you?”

My mom excuses me today from my fifth grade summer school program.  She herself has even taken off work.  Second opinion: another orthopedic surgeon’s office somewhere in the sweltering mirage-inducing black asphalt of downtown Phoenix.  X-rays and proper documents are in my mother’s possession.  Our seemingly smooth access to specialized opinions and medicine exemplifies our white socioeconomic privilege, healthcare coverage since birth—my dad a hardworking business man with salary and benefits.  He’d rather be a radio sports broadcaster, he tells me later in my life, it’s his dream job—and believe me, he’d be great.  But sacrifices must be made to sustain the nuclear heteronormative family.  My mother, too, gave up the life of art and design for full-time hourly wage in order to raise her two daughters.  She and I stroll up to the building, and I squint at the brightness of the white walls, inside and out.  Sterile; and the high-ceiling lobby with granite tile echoes our every shuffling sound.  Fake plants hover in the corners.  Wait a second, I recognize this building.  It’s where I go to be tested for my scoliosis.

No more x-rays needed, instead I proceed through a regime of diagnostic assessment.  This doctor is much nicer and I think he remembers me.  Tests, tricks, games: without trying to correct your stride, walk down this long hallway in a straight line.  Okay, now take off your shoes and socks and walk down the hallway again.  Walk backwards.  Side to side.  Jump.  Skip down the hallway.  Jog, sprint, run down the hallway.  Walk back slowly.  Sit up on this table, and let your feet dangle over the side.  Do they normally turn inward like that?  How does it feel when I turn them out like this?  It’s painful?  Uncomfortable?  Okay.

The proposal for cure: corrective surgery, from the hip down.  Either break both legs at once, re-set them, and be in a wheelchair for six months, or break one leg at a time and be on crutches for a year.  After they heal, physical therapy for one year minimum.  “Oh, the last surgeon said he’d go at you in the ankles?  Bad idea.  It’s the entire leg that’s turned inward, not just at the ankle.  I wouldn’t be comfortable with that,” the doctor muses.

And I think about being in a wheelchair for half a year.  I think about bending it like Beckham, the fifty-yard dash, and my impromptu freak-show performances at recess.  I do not, I do not, think about timelessly gliding down the wedding aisle.

I look up and see my mom picking out a date on the calendar with the surgeon, five weeks from now—making sure I’d have enough time to recuperate before my sixth grade year begins.  The doctor pulls out more paperwork and my mom scribbles in the necessary information to secure my upcoming surgery date.  Both legs at once.

It’s family movie-night: dad, mom, me and Britt peruse the “New Releases” wall around the inside perimeter of Blockbuster from A-Z.  Little signs hang in-between every other section in royal blue and mustard yellow, rhyming “Be Kind, Rewind.”  My hand traces across the VHS case for Now and Then, and I admire to myself Christina Ricci’s classic tomboy character.  My eyes fixate on her casual stature, jeans and t-shirt style, hands in her pockets.  I love her face.  And she even gets to kiss Devon Sawa.  I blush as I recall the scene in my mind.  I could never watch this movie with my parents!  Moving along to the next couple letters in the alphabet with Brittany trailing close behind me, we land on the movie Space Jam, starring Michael Jordan and the Looney Toons squad, and cheer in unison at our selection.  Mom gives in; dad willfully supports our decision and secretly buys us a Kit Kat at the check-out counter away from my mom’s obsessive calorie-counting scrutiny.

Sneaking Britt and I our favorite candy is always an under-cover operation for my dad.  My mom doesn’t stop at the legs: she disciplines her daughters’ bodies from head to toe, and my body in particular.  I’m very protective of my sister, so if and when my mom torments her, I fight back with twice the fire.  At ten years old, I’m restricted to fat-free milk (more like milky water), and low-fat, low-sodium wheat thins (adult food already?).  Everything she gets grocery shopping is some combination of low-fat, non-fat, fat free, sugar free, low sodium, low calorie.  My teeth are another project for my mom.  I’ve already had braces across the top row of teeth (when I was 8 years old)—I’ve had retainers, expanders (to crank my molars into place since apparently they were out of place), and a headgear.  A headgear is that contraption in cartoons the super nerdy kids wear and get beat-up for it at recess.  Thankfully the orthodontist spared me from being socially ostracized and prescribed me to lock it in my jaw and around my head immediately when I got home from school until I woke up the next morning.  That lasted about six months, to fix my “cross-bite.”  It’s no wonder my parents won’t be able to afford to pay for my college tuition.  Looking socially acceptable costs a fortune.

Yet my mother’s obsession with the ideal body is not so simple.  On top of achieving the impossible beauty ideal that western society tells us to achieve, there’s other factors that complicate the story.  Not to down-play the power of discourse, certainly the media floods our psyches with misogynistic portrayals of women that affect how we see and treat ourselves.  Popular media is rampant with images that train our minds to be and think a certain way—attempting to attain certain beauty characteristics such as thinness, hair styled, make up, clothes, and more.  This is ableism.  To idealize a particular body and to comply with subsequent disciplining regimes of self-care is what makes able-bodiedness compulsory: the ideal body seemingly within reach yet perpetually out of sight.  In this sense, my mom is in a weight-loss battle with life.  She was, what she calls, obese in high school.  I’ve known this about my mother since I can remember, as she used her own life story for leverage when threatening us before the long, glorious aisle of cascading chips and cookies on our trips to the grocery store.  She will tell me in my teen years that her obesity, in her eyes, meant no high school proms and no dating.  In college, she confesses to me when I’m older, she went on a crackers and diet soda diet (also known as anorexia).

After losing a drastic amount of weight, she joined the frightening world of Greek Life, where she met my father.  I would argue that my mother has chronic anorexia and post-traumatic stress disorder to this day—not to psychopathologize, but I am trying to make a point.  It’s no wonder, her first daughter and oldest child now embarking on the second decade of her fruitful life, that my very presence in the household would be such an inner psychological and embodied struggle for her.  On top of it all, her side of the family (all them Ashkenazi Jews of Eastern European descent) has carried many struggles with obesity, to the point where a handful of cousins and aunts have had their stomachs stapled or undergone gastric bypass surgery.  The legacy of anti-Semitism also embeds itself within our bodies, written on our flesh, passed on from one generation to the next.  Assimilate or die.  Looking “normal,” to my mother, also means decreasing the chances of positioning my body as a target for assault, for violence.  In addition to the painful processes of female subjectification through the discourse of the ideal feminine body, this family genealogy and larger historical context seems to feed and justify my own mother’s chronic self-starvation and traumatic stress, and further justifies projecting her insecurities and psychiatric illnesses onto me through things like abusive corrective surgeries, invasive dental work, and tasteless low-fat wheat thins with a glass of milk water.  At ten years old, I’m hiding a box of double-stuffed Oreos under my bed.  My heart pounds as I eat them furiously alone in my room, listening intently for the sound of footsteps stomping up the stairs.

On the drive home from Blockbuster I consider the implications of my impending surgery.  Will I ever be the same again?  What will Brittany, my kid-sister, think?  What about when you’re walking down the aisle?  Walk straight, walk normal.  Concentrate on walking straight.  Practice.  You look like a slob.  There, that’s better.  Is that so hard to do?  What about your wedding when you’re wearing high heels?  Concentrate.

We pull into the driveway, and the garage door closes behind us.  I can hear Barclay, our family-dog (a brown and white Shih-Tzu), whimpering and scratching the walls in excitement in the laundry room upon our arrival.  I squeeze through after my mother to make sure he does not escape into the dusty, hot, two-car garage stacked with bicycles, storage shelves, and bins full of sports equipment.

“I’ll make the popcorn!” my mother announces.  This gesture excites no one but her, and maybe the dog, because, my dad, Britt and I are butter-lovers, and my mom, well, I’m sure you can guess the way she preps her popcorn: plain.  Plain: no salt, no buttah, nada.  Um, what’s the point?  I might as well snack on leftover cardboard boxes.

The movie begins and we dim the lights around the couches.  Brittany and I move down onto the carpeted floor to sit closer.  Michael Jordan gets sucked, literally, into Looney Toon land and the silly basketball adventures begin.

“Brooke!” my mom shouts in a whisper.  “Don’t sit like that.”

I’m feeling defensive after my inner dialogue on the car ride home.  “Leave me alone!” I spit bitterly back at her, over my shoulder.

Don’t sit like that,” she snarls.  I watch Michael Jordon’s distinct pigeon-toed stride across the court as he approaches Bugs Bunny.  “Sit cross-legged.”

“I can’t!” I shout.  “It doesn’t feel good.  This way is more comfortable.”

“Wendi, leave her alone,” my dad murmurs.

“David!” she exclaims in disbelief, slapping her knee for effect.  “The way she’s sitting just makes it worse.”

“She’s fine,” he says.  “MJ didn’t turn out so bad.”  And he leans over to tickle my mom in the rib.  She tries her hardest not to laugh, not to smile, not to change her ways.

My mom is frantic, getting cold feet, having second guesses, wondering if she should have me go through with the surgery.  She barges into my bedroom, and I’m sitting at my desk reading Nancy Drew.  Scrounging through the disarray of the clearance section, I found a Nancy Drew six-pack of the first six volumes at the bookstore that my dad takes me to, and the books they’re all in shiny hardback bind.  I love the smooth hard cover and the pointy edges protecting the crisp pages inside.  Like fresh dollar bills, the texture almost the same.  I love the sound the crisp, fresh, one-dollar-bill pages make whenever I turn one over.  The beautiful sound of paper felt through my fingertips.

“Brooke,” she says to me, her urgent tone pleads that I place the bookmark in and set the enthralling mystery aside.  “Do you want to have the surgery?” she asks me, for the first time.  For the first time.  She finally asks.  Maybe she wants sympathy, I think she wants this because I can hear it in her voice, that rare tone my mother gives when she’s asking for sympathy, almost asking for forgiveness but not quite articulating that she’s sorry.  No she never says she’s sorry.  I can’t give her sympathy, even though a small part of me wishes that all of me could, and instead I give her anger.  How could she now, just now, finally ask me?  After all this?  She expects to put the burden on me, now?

The skin on my arms it prickles and the hairs they stand up in solidarity, ready to protect me.  Tiny little hairs, fierce, erect, ready to fight, my teeth, they clench and grind and I want to answer her question but I am so shocked and angry that I find myself in silence, I release the strain of molar against molar and find my mouth open, my jaw ajar.

“Do you want to have the surgery?” she asks again, as though maybe I didn’t hear her the first time.

Do I want to have the surgery? Do I want to have the surgery!  I want to shout it, I want to scream it.  To me it’s a crude rhetorical question, an insult, a spat in the goddamn face.  But I can’t even say a word.

Third opinion: doctor’s office not quite an office, but more like a den, a study den, with a lower ceiling and rustic wooden furniture.  A dark, burgundy wood that invites me to sit and ponder thoughts, deep thoughts, surrounded by lots of books in a dark burgundy wooden bookshelf full of lots of crisp, beautiful-sounding pages.  The doctor—an older white man with white hair and a white facial beard with eyewear like my poppy, the kind with large lenses and thin bronzed wire frames—asks me to sit up on the patient’s table.  He squints at the x-rays illuminated behind my head.  He squints at them for a brief second, glances at my chart, then looks over at me.  My mother, she stands next to the patient’s table, waiting anxiously for any word that might drop out of the doctor’s mouth.  I know she needs the reassurance, I know she needs a doctor to tell her that I don’t need surgery.  I couldn’t bring myself to say no to her.  Maybe he will, I know she’s hoping he will.

“So tell me why you’re here,” the doctor says, to me.  To me!

“Um, I’m pigeon-toed,” I answer.

He looks squarely at me and pauses, then remarks, “I see,” with a certain curiosity, like we’re in a Nancy Drew mystery—detectives putting the clues together one by one.

“And is there something wrong with your pigeon-feet?”

I shrug my shoulders.  “I can run fast at school!” I proclaim, my eyes open-wide from the thrill of speaking my pigeon-toed pride aloud.  “And I’m good at soccer.”

“Mhm,” he recites like a line from Sherlock Holmes.  “Do you ever trip over your feet?”

“Well, yeah, sometimes I guess.  But not very often at all.”

“Do kids make fun of you at school?”

I never really thought about it like that before.  “I don’t think so.”  The doctor, talking to me, asking me questions, is a different experience for me than with the other orthopedic surgeons.  The other doctors, they so readily diagnosed me, so readily assessed and prescribed corrective surgery.  All it took was one visit per doctor—and they’re ready to cut.  To turn me into a cyborg—I’m both disturbed and fascinated by the thought, not quite sure what it all really means.  Both surgeries, either at the ankles or the hips, would require hardware screwed into my bones.  Would I beep through security at the airport?  Would I have scars in my hips, in my ankles, forever marking the authoritative hand of medicine on my flesh?  Where is the line drawn between corrective surgery for ‘pathological deviance,’ and plastic surgery for cosmetic purposes?  Where would my corrective surgery fall between such distinctions?  Did I really have something wrong with me that anesthesia, sharp blades, bolts and screws, lots of blood, lots of stitches, lots of scars, and lots of post-op pain could “fix”?

First opinion.  Second opinion.  Now third opinion.  My mom, she hardly speaks this go around.  The doctor hardly asks her a thing.  This changes my experience with and approach to medicine and doctors entirely.  This doctor wants to know how I experience my body.  He does not want to know what others’ perceptions are of me, per se, like that of my own worried mother, but rather, how I experience others’ perceptions.  For instance, do kids at school make fun of me?  It depends.  In some ways yes, in some ways no, but kids are mean to each other regardless since we’re engrained from such an early age that there are indeed freaks and weirdos: like nerds, like booger-eating slimy outsiders, like chubby dweebs, like Jews, like the one Black kid in the whole fifth grade, like brown-skinned non-native English speakers, like the masturbating child, like the kid who is left-handed, like the kid with a lazy eye, with a speech impediment, with a stutter, with a runny nose, with too much spit, with a big nose, with big ears, with dyslexia, with duck feet, or, with pigeon-feet.  All us freaks and weirdos: being stared at, regulated, disciplined, feared, loathed, despised, pushed into isolation—all for being who we are perceived to be, not for being who we say we are.  So here I am, saying who I am, and I demand that you listen, listen hard, and rip out those presuppositions, discard your fear, and re-perceive the idea of me and my freakery and all those other weird kids who sit or stand beside me, next to me, and with my pigeon-feet.

“Okay,” he ponders as he reads over my chart a second time.  “Does being pigeon-toed hurt?  As in, physically, does it give you any physical pain?”

I think for a moment.  “Only when I’m sitting criss-cross-Apple-sauce on the floor,” I respond.  “It’s the way it turns my legs, it makes them sore.”

And then, the question is asked.  He asks, “do you want to have surgery?”  His question provokes much deliberation in my head, the context so different from when my mom asked, and I deliberate as I attempt to speak it out loud, as my mother chimes in, as the doctor listens hard, as I try to figure out how to say what I want to say, as I realize that the doctor has not suggested once that my legs need to be fixed, and this realization gives me the confidence to say, No.  No I do not want the surgery.

The doctor listens and responds to my spoken thoughts, “Alright then.  I do not recommend any surgery.  You are fine just the way you are.”

Left - kid sis; right - pigeon-feet.

Advertisements

Body Out of Control in the movie: Love and Other Drugs

What can I say?  I have a soft spot for Hollywood films that attempt to counter pervasive stereotypes of disability.

Love and Other Drugs (aka LOD) stars hotties Jake Gyllenhaal and Anne Hathaway—and both of their characters have disabilities.  Who woulda thought?  Nowhere in the film’s promotional campaign will you find clues about disability, except for a five second blip in this two-minute-long movie trailer.  The brief synopsis on the DVD case says nada about disability or illness:

“Academy Award Nominees Jake Gyllenhaal and Anne Hathaway co-star in the “smartest, sexiest and downright best sceen-melting romance of the year.”  Hathaway delivers an unforgettable performance as the free-spirited Maggie, who meets her match in a charming Viagra salesman named Jamie (Gyllenhaal).  Maggie and Jamie leap into a no-strings-attached affair, but no matter how hard they try to keep things “casual,” they can’t help falling under the unfluence of the ultimate drug…love!”

Little does the viewer know, Maggie has early-onset Parkinson’s disease, and Jamie has Attention Deficit Disorder: both impacting the characterizations of Maggie and Jamie and the film’s storyline in significant ways.  I guess disability is supposed to be the unexpected twist—the clencher, the all-revealing “tragedy” as the true test of love.

I could write about the nudity in the film, like Entertainment Weekly, NY Mag, Newsweek, or the Huffington Post.  Perhaps I should talk about the movie’s hot crip sex (like when Jamie makes love to Maggie while she convulses in symptomatic tremors), or about Maggie’s experience with disability identity at the “unconventional” support group for folks with Parkinson’s.  Both issues of representation are important and worth considering, but I’ll leave that commentary up to Disability Arts Online blogger Alison Wilde in her review of LOD.  Wilde also touches on other prominent disability justice themes, such as reciprocity in love and care, mutual respect, and interdependency.

But what about healthcare, medicine, and science?  Maybe the authority of medicine is so normalized that few people care to expose it.  Not to discredit Wilde, I like her framing of the film’s approach to healthcare inequality:

“…the lampooning of the relationship between drugs salesmen and medical professionals and their power also shaped a number of poignant scenes, a number of vignettes powerfully illustrated the consequences of inequalities in health care.  For me this added extra power to minor details of the film.”

Yet, I disagree with Wilde that such relationships or vignettes illustrating healthcare inequality in LOD are “minor details.”  For me, the myth of control and the authority of medicine are major underlying assumptions of the movie that enable the nondisabled viewer to leave the flick with a sense of relief—a relief of anxiety that is all too prevalent throughout mainstream Hollywood films portraying disability.

So, I just mentioned three things: 1) the myth of control, 2) the authority of medicine, and 3) a relief of anxiety.  Let’s break these three concepts down so I can expose how the film relies on, rather than undermines, ableism.

  1. The Myth of Control: “A major obstacle to coming to terms with the full reality of bodily life is the widespread myth that the body can be controlled” (Wendell 93).  The bottom line here is that we think we can control our bodies—and we’ll do whatever we can and whatever we have to in order to control them: especially from disease, illness, accidents, pain, disability, and death.  The myth of control makes us think that if we try hard enough, if we raise enough money for more scientific research, that we can and will somehow be able to prevent things like disease, illness, accidents, pain, disability, and death.  In a more subtle sense, we try to control our curly and frizzy hair so it’s straight and smooth, we try to make wrinkles in our face disappear, we try to control the appearance of cellulite, we try to control the color of our teeth so they’re glowing like Ross’ Chiclets on Friends, we shave our face, our legs, our underarms in attempts to control hair growth.  These attempts to control and perfect our bodies are typically effects of cultural standards that determine what is desirable, ideal, or even, normal.  Normal?  Some might call this normalcy, some might call it normality, others might say normativitiy, and few might throw down the phrase “compulsory able-bodiedness.”  Regimes such as your entourage and application of toiletries every morning is an example of the compulsory nature of normativity, and self-care/control.  How does this relate to disability?  Feminist philosopher Susan Wendell puts it this way: “The disciplines of normality…are not only enforced by others but internalized.  For many of us, our proximity to the standards of normality is an important aspect of our identity and our sense of social acceptability, an aspect of our self-respect.  We are unlikely to notice this until our ability to meet the standards is threatened in some way.  An injury or a prolonged illness often draws the attention of non-disabled people to this previously unnoticed facet of their self-images” (88).  Medically speaking, the compulsion for The Cure (the end-al be-all Cure for disease, sickness, ageing, injury, pain) drives seemingly all funding and resources in scientific research for the purpose of fixing what we fear might happen to our bodies.  You might be wondering, what’s so bad about trying to find a cure?  Why I’m glad you asked.  This leads me to my next point.  But one more thing—don’t forget why it’s called “The Myth of Control.”  It’s because, it’s a myth, and maybe some things just can’t be controlled.  Disease happens, illness happens, pain happens, accidents happen, zits happen, yellowish teeth happen, curly hair happens, and death is inevitable.  Why are we so afraid of these things happening to us?
  2. The Authority of Medicine: So, what’s so bad about trying to find a cure?  In my view, there is nothing intrinsically bad about it.  I like how Wendell frames one way of thinking about it: “Ironically, by creating a culture of individual responsibility for illness and accident, the myths of individual control and medical control through cure discourage any search for possible social and environmental causes of diseases and disabilities, thus inhibiting efforts to prevent them” (106).  It is not the prospect of a cure in and of itself that is up for debate, but it is how the cure functions in the context of medical authority and the myth of control.  For instance, how might dominant culture’s emphasis on the cure reinforce stereotypes of disability?  This is where the medical model of disability, or the medical model of bodies out of control, comes in:

    "I want to help the handicapped! …according to the Medical Model of Disability"

    Dr. Ken says: “I invent and administer tests to classify disabled people according to what I think are their impairments.  Then I carry out experiments to try to make them more like me.  If I fail, I try to identify and kill them before they are born.”  Through the medical model and its authority, we believe that something like disability is an individual tragedy, a pathological case to be officially diagnosed, viewing impairment as something that is inherently wrong with someone that needs to be fixed, or, cured.  Diagnosis: difference.  Critiquing the authority of the medical model and departing from it, disability justice activists and scholars utilize the social model of disabilityto understand how insidious dominant meanings of disability are produced and enforced:

    "I want to help the handicapped! …according to the Social Model of Disability"

    Xena Warrior Disabled Barbie Activist says: “I fight against prejudice, discrimination and disabling environments.  I fight for equal rights legislation and better health and social care provision.  I also fight to eliminate the poverty, abuse, violence and war that cause the majority of impairments.”  The thing that I want to call attention to here is the normalization of medical authority: we take third-person scientific fact as natural, objective truth (Wendell 121).  These supposed truths frame how we understand our own bodies, and our complex experiences and realities of embodiment.  Wendell writes that “those of us who have chronic illnesses and disabilities, and those who are dying of incurable illnesses, symbolize the failure of medicine and the Western scientific project to control nature” (96).  Fear of disability is rampant because the very presence of people with disabilities is proof that the myth of control is a myth.  Given that the myth is so deeply embedded within dominant medical-scientific culture and our own psyches, it is hard for us to collectively acknowledge and value the fact that human existence and lived embodied experience occur in unlimited ways.  We tend to measure humanity solely through the medical model’s fictitious norm of what it means to be healthy, of what it means to have a body that is “able.”

  3. Relief of Anxiety:  In terms of film or literary analysis, “alleviating anxiety” is a device commonly employed in mainstream narratives when grappling with disability in the plotline.  Code of the Freaks, a work-in-progress documentary film, discusses stereotyping of disability in Hollywood and its use of this particular device.  More or less, this device functions to relieve our fears that disability or chronic illness will happen to us.  It does this by projecting the supposed “tragedy” back onto the individual, away from us.  I think of the “relief of anxiety” device as effecting a film’s plotline in four different manifestations: 1) the disabled character/person is killed off by society because s/he is so hideous and monstrous that it must be done (e.g. Frankenstein, 1931), 2) the disabled character kills her/himself, commits suicide, due to the all-too-common terrible sentiment that “I’d rather die than live with a disability” (e.g. Million Dollar Baby, 2004), 3) the disabled character/person dies from complications due in part to their disability (e.g. All of Me, 1984), and 4) the disabled character is cured (e.g. Heidi, 1937).  What do all four aspects have in common?  Disability is somehow eliminated.  What does the elimination of disability subliminally convey to the viewer?  That disability is so repulsive, awful, and miserable to the point that we must get rid of it entirely—which links back to the first two concepts: The Myth of Control and The Authority of Medicine.  Whether we realize it or not, this movie and several Hollywood films portraying disability, carry and deliver these concepts through the device of alleviating anxiety.

Jamie loves Maggie, Maggie loves Jamie.  Despite the sometimes awkward acting, cheesy sentimental music, and redundant clichés of love expression (such as the climactic bus chase scene, and the “I’ve never told anyone I’ve loved them before” panic-attack-inducing line), I appreciate the film’s attempt to challenge stereotypes of disability, and to reconcile the complexities of chronic illness and intimate long-term relationships.  However this reconciliation at the end of the movie, when Jamie says he’d carry her around if he had to (which honestly, so sweet and potentially powerful), is only reconciliation: the action of making one view or belief compatible with another.  To me, this is somewhat analogous to the sentiment: “I tolerate gays; I accept them for who they are.”   For example, the toleration of “gays” is compatible with the reformist agenda to legalize gay marriage.  Similarly, Jamie’s ableist assumptions are reconciled with Maggie’s harsh realities of embodied experience: he will tolerate her disease, even to the point of thinking he accepts her for “who she is.”  This is where the film is enormously disappointing: Anne Hathaway’s character seems to have so much potential to undermine ableism.  I kept waiting for it, and waiting for it, but ultimately the framing of the film from Jamie’s perspective takes the cake.

For me, there are two main aspects of the film that may seem like “minor details” to others which reinforce ableism rather than uprooting it.  The first and more obvious aspect is the sequence of scenes where Jamie searches for clinical trials and scientific research with fervor.  He will do anything to cure, fix, make better his love, rather than focusing on how to make her life more livable with incurable illness.  Maggie and Jamie drive hours to the next major city, they fly across the country, they spend lots and lots of money.  Wendell’s point relates to this part of the movie all too well: “For people with life-threatening illnesses, pressures from their loved ones to seek a cure can consume their remaining time in medical and quasi-medical quests” (98).  The strain of these quests on their relationship is evident when Maggie pushes back, and questions whether or not Jamie can love her if she shows no hope of ever getting “better.”  I wish the plot lingered here, and rendered more complexly the realities of this struggle.  But apparently a bus chase is supposed to suffice.

And then they live happily ever after, right?  Maybe to some.  But think about it: the movie ends with Jamie quitting his job as a Viagra salesman, in order to apply and attend medical school.  This is my second point.  The movie ends with Jamie as a med student.  A future M.D., a doctor, a researcher, a person with authority in charge of clinical trials.  This end-of-the-movie twist, an epiphany if you will, reinforces the myth of control and the authority of medicine over the ways that we experience and understand our bodies.  Wendell argues that the “very availability of a virtually unlimited number of treatments protects the myth of control from evidence against it, because there is always another method of control to be tried.  People with disabilities or incurable illnesses often find that long after they have accepted the conditions of their bodies, their friends and acquaintances want them to continue looking for cures” (97).  Jamie becoming an M.D. is an indirect way for him to continue searching for a cure without directly forcing Maggie to attend an onslaught of trials and doctor’s visits.  By becoming an M.D., Jamie takes a different avenue in attempts to control that which in uncontrollable.  Moreover, by becoming an M.D., Jamie relieves the audience of its anxiety, its fear of disability, with the promise that he will triumph with his new life endeavors—of curing (fixing, making better) Maggie, who he loves.  It is touching.  But I wish Jamie would just stay a Viagra salesman, and face the perhaps harsh but necessary reality of bodies out of control.

“We need to recognize that scientific Western medicine’s quest for prevention and cure has prevented and relieved, but also caused, a great deal of suffering.  We need to recognize that most people experience disability in the course of their lives.  We need to demand that medical practice devote more attention and resources to improving the quality of patients’ experiences, to helping people to live with incurable physical limitations and suffering, and to enabling those who are fatally ill to die as well as possible.  We need to integrate the experience and knowledge of people with disabilities and those who are dying into the mainstream of our cultures, into our concept of life as it is ordinarily lived.  We need to learn to accept that people are not always able to control their bodies and to stop holding them responsible for doing the impossible.  In short, we need to become more willing to face the realities of bodily life.”

—Susan Wendell, The Rejected Body

Work Cited: Wendell, Susan. The Rejected Body: Feminist Philosophical Reflections on Disability. New York: Routledge, 1996.

Cranberry the Facebook Friend

Your bagel is coming right up, he says.  It’s summertime in the Bay, after the first year of my Master’s program, and I’m a visiting student at UC Berkeley for a “Women and Disability in Film and Stories” class.  Here’s your tsea, he says.  Voice soft and elegant, a soft ‘T’ sound, pronouncing his vowels and consonants with a light lisp, not so much a distracting lisp but a soothing lisp, a T that sounds like a tz, a ts, sliding off the tongue so crisp.  Tea.  Tzea.  Earl grey.  He’s going back to the counter to get my bagel.  I ordered what I believe was an Everything bagel left in the little presentation box of pastries and whatnot.  The only bagel left.  What bagel do you think that is?  I ask him back when I was ordering at the counter.  You think it’s an Everything bagel?  He leans over from the cash register and takes a peak.  Well, he says in that elegant, crisp voice of his.  It has poppy seed, some sesame seed, yes looks like an Everything bagel.  Okay I’ll take it, I tell him.  Half awake: my head swimming from not enough sleep, and I take whatever is in front of me.  They said the soup for today is Split Pea.  Split Pea is not really my kind of soup, but Chris Lewis would have it.  Chris Lewis, my second high school sweetheart, a compassionate soul indeed.  If he were here, he would get some of that soup, maybe.  So I say no to the soup and I take the bagel because it is right there in front of me and I don’t have to think too hard about it.  No thanks to the soup.  I’ll have a bagel.  Five dollar minimum for the credit or debit cards?  My order is $4.35.  Do I order something else so I can use my card or do I maybe have enough cash in my wallet?  Oh there’s a five dollar bill in my wallet, here you go.  Do you have Wi-Fi here?  I ask him as he drops off my tzea.  No, we have no Wi-Fi, but maybe you can connect to Air Bears.  And he walks away to get my bagel.  My signal to Air Bears, the UCB internet, is very low.  Basically no connection.  Some people have Internet wherever they go on their laptops.  They’re fancy like that.  I am connected everywhere I go!  That’s what the chick at the table next to me is probably thinking.  I have Internet at this Wi-Fi-less café, wow look at me!  Fancy free!  Internet, Internet, Internet.  Why would I even want to connect to the Internet right now anyway?  World Wide Web.  I would probably check Facebook, read through my e-mails.  You know, important stuff.  Stuff that keeps me preoccupied so fucking much.  Keeps me preoccupied?  Keeps the World preoccupied!  Millions of “professionals” make a living in the U.S. and around the world sitting on their asses all day long, checking e-mails.  Check, check, checkity-check.  Oh wow I finally sent off all those emails and even responded to the emails that I’ve been meaning to respond to for weeks.  Boy I feel accomplished.  Look at all those e-mails.  Check check check.  I better not delete any of them in case something extremely rare happens and I need the information from that one random e-mail.  How should I sign my e-mails?  Something simple yet unique.  Unique!  Sincerely, Brooke.  That’s mine.  Several people write: Best, Cranberry.  Cranberry!  Where did that come from?  I’ve never met anyone named Cranberry before.

This bagel is pretty tasty.  The tzea, I don’t know yet because I haven’t tried it.  It’s probably still too hot for me.  My tongue, it gets burned by this scalding hot water.  Tea water.  So I try to be cautious because a burnt tongue means burnt taste buds and tender pained tongue muscles.  It heals quickly, I know, but I still don’t like burning my tongue.  Okay I just tried the tea, the tzea, and it’s perfect temperature.  And it’s delicious.  Earl grey.  Mmm.  I just took another drink of the perfectly temperatured delicious Earl grey tea and I held my pinky finger out while I sipped.  I’m so refined.  It happened naturally, so I didn’t try to restrain it.  Pinky out, sip the tea, I’m a natural socialite.  I should have tzea parties with Everything bagels with tsea water at just the right temperature and everyone will be happy that their host made sure not to burn them with scalding hot tea, tzea, water.  And everyone can bring their laptops or iPhones or iPads or Blackberries and we can all sit around together drinking tea and eating bagels and checking our e-mails.  I might even poke someone on Facebook when s/he is sitting right next to me in real life.  Now wouldn’t that just be super silly of me.  Get it?  I poke her/him on the World Wide Web when I could just talk to her/him in person!  Oh, the hilarity ensues.  Before I know it Cranberry over there is going to write on my Wall when I am sitting right across the room from her.  She is going to say, my Brooke this tzea is divine!  Then I will most likely “like” her comment, and then comment on her comment with an emoticon smiley face.  But then Cranberry will look up from her iPad and see that I’m not actually smiling in real life.  Then she might tag me as an untrustworthy narrator.  Or a flat-out liar.  So when she sees that I’m not actually smiling in real life, I will comment again on her comment after my initial comment with a “JK” so as to redeem myself from being a Facebook liar.  JK I’m not really smiling Facebook friend!  Facebook friend, I am not really smiling.