Tag Archives: Bio-Ethics

Curiosity Kills the Rat

19 Oct

From the Archives

 

“All the freaky people make the beauty of the world.”

— Michael Franti

Fourteen years ago, I made a trip to Hot Topic—that quintessential 90s chain store for all things goth—in search of some fishnet stockings for a friend.  It was my first visit to the store since I was back in a wheelchair for my third and final limb-lengthening procedure and the narrow aisles prevented me from venturing beyond the entrance.  My first time in a wheelchair, from ages 11 to 12, had been a completely humbling experience as I was forced to see how very inaccessible the world is for the non-ambulatory.  This time around I was battling the hot-cheeked self-consciousness that adolescence attaches to any signs of dependency. 

As I tried to look casual while flipping through black gloves, black stockings, and black dog collars, a guy approached me sporting crimson hair, eyebrow rings, an employee badge and a smile.  “This is store is easily adjustable,” he grinned, and with that he began shoving aside the display cases and clothes racks—which were, like me, on wheels—clearing a path for me right through to the back and taking little notice of the other shoppers, some of  whom took one to the shoulder.  It was one of those crushes that disappear as quickly as they develop but leave a lasting memory: my knight in shining jewelry.

Thanks to experiences like this, I have a special place in my heart for the acceptance of physical differences that can often be found in the subcultures of punks, hippies, and goths.  From the imagining of monsters to the examination of anything taboo, counter-culture is often unfazed by physical qualities that fall outside of mainstream beauty standards.  The first kid in my high school who chose not to stare at the external fixators on my arms but instead held the door for me had green and purple hair.  About a month after my trip to Hot Topic, I showed a death-metal-loving friend my right fixator (shown above) for the first time, with the six titanium pins protruding from open wounds in my thigh.  He grinned, “That is the ultimate piercing, man!”  He hardly could have come up with a more pleasing reaction.  That my wounds were cool instead of “icky” or “pitiful” was a refreshing attitude found almost exclusively outside mainstream culture.  This attitude more readily understands my belief that my scars are merit badges I earned, not deformities to erase. 

However, this tendency toward decency over discomfort is just one side of the alternative coin.  Every subculture has its strengths and its weaknesses, and for all the freaky heroes I’ve encountered, I’ve also met plenty whose celebration of difference devolves into a sick fascination with the grotesque.  “Weird for the sake of weird” is progressive when it asserts that weird is inescapable, that it is in fact as much a part of the natural order as any of our conventions, and when it serves as therapy for the marginalized.  But it is problematic when it involves self-proclaimed artists using others’ reality as their own personal toys.     

In a previous post, I referred to a friend of friend including me in an Internet discussion about limb-lengthening.  His comments were in reaction to a photo of a leg wearing an Ilizarov fixator that had been posted on a Tumblr page focused on the “wonders of the world.”  There are countless sites like it, where photos of conjoined twins, heterochromatic eyes, intersexual bodies, and medical procedures are posted alongside images of animals, vampires, robots, cosplay, self-harm, manga and bad poetry.  I get it.  The world is “crazy” and it’s all art.  But if that’s not a freak show, what is? 

Disabled people are no longer put behind glass or in the circus—at least not in the U.S., Canada or Western Europe—but many people still believe they reserve the right to stare, both in public and on the Internet.  Whether under the guise of promoting diversity or admiring triumph in the face of adversity, they suppress any realization they may have that no one likes being stared atUnless it’s on our terms.  

I see endless art in my medical experiences and it can be so therapeutic.  During my first limb-lengthening procedure I also had braces on my teeth, leading my dad to observe, “She’s now 95% metal.”  Kinda cool.  During my third procedure, I had Botox injected into my hips twice to paralyze my muscles lest they resist the lengthening.  At the time, when I along with most people had no idea what it was, it was described to me as “basically the most deadly poison known to man.”  Whoa, hardcore.  When I happened upon photos of my anterior tibialis tendon graft surgery, I was enthralled: “I’m so red inside!”  And when a fellow patient recently alerted me to the fact that a high-end jeweler designed a bracelet strongly resembling the Ilizarov frame, I laughed my head off.  Almost all of us like looking at our bodies, and perhaps this is especially so for those of us who have had real scares over our health.  It’s a matter of facing our fears and owning it.  But no one likes the idea of others owning it.  This subtle but severe preference, this desire for dignity determines the difference between human rights and property rights. 

Two years ago, NPR featured a piece by Ben Mattlin, who is non-ambulatory and who said he used to be uncomfortable with the idea of Halloween and its objectification of the grotesque.  From my very first costume as a mouse to my most recent stint as the Wicked Witch of the West, my love of Halloween has not so much as once flickered, but his point is worth discussing.  Costume play, Halloween and any celebration of “weird” that is primarily attention-seeking inherently assumes there is a “natural” basis to be disrupted.  (And all too often Halloween devolves into offensive imitations of all sorts of minority identities.) 

I have my own collection of artsy photos stolen off the Internet that I use as screensavers and montages for parties, but they do not include photos of bodies taken outside the context of consensual artistic expression.  Re-appropriating a photo in a medical journal for a site about all things bizarre is protected under freedom of speech, but it can feel like disregard for consent.  And in any case, such xenocentrism will always be just as superficial as the status quo it seeks to disrupt.

When conjoined twins Abigail and Brittany Hensel agreed to be interviewed once—and only once—for a documentary about their lives (which I highly recommend), they explained that they don’t mind answering strangers’ questions at all.  (Ben Mattlin has said the same, as do I.)  What they hate more than anything is being photographed or filmed without permission.  While attending a baseball game outside their hometown, a sports film crew quickly directed their attention to the girls.  Even though they were already being filmed by their own documentary team, the stranger camera’s invasive, presumptuous stare ruined the day for them. 

Sensitivity toward others’ experience with medicine and death should never kill the discussion.  These discussions are imperative and art is the most glorious way we relate to one another.  But just as there’s more to good manners than simply saying “Please,” there’s more to genuine learning and artistic expression than poking at anything we can get our hands on.  Nuance, deference and respect are prerequisites for anyone with artistic or scientific integrity not only because they are the building-blocks of common decency, but because history has shown that curiosity will more likely harm the rat than the cat.

 

 

Originally posted May 19, 2012

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“Fashionista Has Leg Amputated So She Can Wear High Heels”

2 Dec

L0066938 Illustration showing treatment of a clubfoot Credit: Wellcome Library, London. Wellcome Images images@wellcome.ac.uk http://wellcomeimages.org Illustration showing treatment of a clubfoot 1806 Memoria chirurgica sui piedi torti congeniti dei fanciulli, e sulla maniera di correggere questa deformità / Antonio Scarpa Published: 1806. Copyrighted work available under Creative Commons Attribution only licence CC BY 4.0 http://creativecommons.org/licenses/by/4.0/

(Image from Wellcome Images used & altered under CC)

 

Or so The New York Post would have you think.

21 year-old Mariah Serrano was born with a club foot.  By the time she was a teenager, she faced increasing chronic pain and her doctors strongly advocated amputating and replacing her leg with a prosthetic one. Now an assistant designer for American Rag and author of the blog Confessions of a One-Legged Fashionista, she recently shared her story with the Post:

Serrano struggled to look like the other girls in her high school who often called her “gimpy.”

“I felt silly in pictures, I was the only one in these shitty little ballet flats,” she recalled.

“I had to wear all sorts of braces. It was uncomfortable and frustrating because they weren’t solving the problem and I often felt embarrassed.”

The glamour girl wore patterned knee highs and flashy tights to mask her deformity. She even dyed her hair pink to distract people from staring at her leg. She eventually stopped going to classes and was home-schooled.

“Kids are mean,” she said. “It made things very hard.”

“A lot of times I felt left out because I loved to dance and go out.”

But even more mortifying for the teenage girl, was being forced to wear sneakers to prom.  “I was really devastated in the mall,” she recalled, after shopping for four hours to find a chic shoe.

The article never mentions any medical purpose for the amputation. Serrano is only quoted as hating the limited number of footwear options that had been available to her prior to the operation. The story ran four days ago and was quickly picked up the British tabloids.  And Serrano is not pleased.  She explains on her blog:    

I did not choose to cut my leg off so I can wear high heels, I had my leg amputated because I was very sick and the quality of my health and life were suffering. Doctors do not welcome the idea that you are unhappy with your footwear choices, so you should remove body parts.

This event was a real decision that I took very seriously. It was a decision my family and I made together, so that I would be able to live my dreams, and not mind you, dreams of footwear, but dreams of waking up and going about my life not in chronic pain.

I think it’s safe to say that The New York Post is not a feminist crusader on the issues of body image and beauty standards.  So why then would they decide to warp Serrano’s words to feed the image of the fashionista lifestyle as a vile instigator of self-mutilation?  The story of a young girl simply but bravely electing to trade chronic pain for a prosthesis is severely lacking in vitriol. This means there is no surefire guarantee that it will unleash a deluge of jaw-dropping, eye-rolling, and catty comments from readers about the girl in question.  That guarantee is essential to the business the Post is in.

Serrano is hardly the first individual to be misrepresented by the tabloids.  But who’s keeping the tabloids going by hungering after such headlines?  It’s this hunger that drives journalists across the spectrum to emphasize the most soap opera-like elements of a person’s life story.  I’ve seen the most loving, supportive families with disabled children portrayed as walking tragedies based on a few of their more emotional quotes taken out of context.  This approach knows that readers and viewers will consequently feel sorry for the pathetically confused freaks, and good about themselves.  Not unlike the mean classmates Serrano cites from her high school days.

So if anyone is interested in ending the tabloids’ tradition of tearing people’s personal lives to shreds, we can curb their sales by curbing our desire to use bits of information about people we don’t know as an easy way to prop ourselves up. Of course this is asking a lot, and so, once again, we must decide which is harder – altering the way we think or altering our bodies?

 

 

New Rights for Intersex Newborns in Germany

25 Aug

Germany has become the first country in Europe to allow parents to check one of three boxes for gender on their child’s birth certificate: “male,” “female,” or “blank.” The new option is intended to accommodate the parents of intersex newborns; i.e., those whose reproductive or sexual anatomy does not appear to fit the traditional definitions of male or female. The children will be allowed to choose “male” or “female” later in life, but they will not be required to. This will all go into effect November 1st.

While the law says nothing about gender ID in passports, equality activists are celebrating it as a tremendous step forward. According to Silvan Agius of the International Lesbian, Gay, Bisexual, Trans and Intersex Association, the European Union has been slow to act on issues of gender identity. “Germany’s move will put more pressure on Brussels,” Agius told Der Spiegel. “That can only be a good thing.”

However, not everyone in the intersex community is celebrating the idea of a third gender box. Creating a new category, they argue, is to give in to the idea of narrowly defined categories. Instead of turning the gender binary into a triad, why not loosen the definitions of “male” and “female” to include those with all sorts of bodies? Many people with intersex conditions have a perfect sense of belonging when it comes to gender – they only feel alienated when others insist they don’t belong.

And while they often cooperate politically, intersex people should never be confused with transgender, transsexual, or genderqueer people. The Intersex Society of North America states, “Most people with intersex conditions come to medical attention because doctors or parents notice something unusual about their bodies. In contrast, people who are transgender have an internal experience of gender identity that is different from most people.” The ISNA’s history of intersex offers much information about the long medical tradition, and resulting problems, of conflating and confusing the two.

Professor Alice Dreger explains that cases wherein intersex individuals also qualify as transgender because they elect to transition from the gender assigned to them at birth—this is essentially the plot of the 2002 Pulitzer Prize-winning novel Middlesex—are quite rare. Dreger notes, “Far more often, the concerns of intersex and transgender people represent opposite sides of the same coin: intersex people get surgeries they don’t want, and transgender people can’t get the surgeries they do want.” The surgeries many intersex people regret having undergone in childhood are primarily cosmetic, removing or adding tissue only for the sake of “normalizing” the appearance of their genitals, and at the expense of sensation and function.

Another all too common problem is the concealment of the patient’s intersex condition by her parents and doctors, leaving her unaware for as long as possible and discouraged from asking the questions she might begin to have about her anatomy. In her essay “Twisted Lies,” Sherri G. Morris writes that not finding out until college that you are without a uterus can be rather upsetting, to say the least.

As for the well-known term “hermaphrodite,” it is inaccurate at best and defamatory at worst. The word represents the idea of one person being anatomically both male and female, and this idea is a purely mythological one. Because it is physiologically impossible. As Dreger points out:

…the only way you could be born with “both sets of genitals” is if you had two bottoms. The clitoris and the penis are homologues—they are the same organ developmentally—so you get one or the other, or one in-between organ. Similarly, the labia majora and the scrotum are homologues—so you get either a set of labia majora, a scrotum, or something in between. But you can’t have all the female parts (clitoris, labia majora, etc.) and all the male parts (penis, scrotum, etc.) on one person…

What people mean when they say a person “was born with both sets of genitals” is that a child may be born with a phallus that looks a lot like a penis plus a vagina (the tubular organ that goes from the outside of the body towards the uterus, if there is a uterus). This can happen because of hormones, in conditions like congenital adrenal hyperplasia and partial androgen insensitivity syndrome. But to say that gives you “both sets of genitals” is to pretend that somehow all that matters to males is their penises and all that matters to females in their vaginas. In fact, many of us women also care about our clitorises. (For that matter, many men care about their scrotums.)

Unfortunately, sick fascination with the hermaphrodite is utterly pervasive today. Comedians of all stripes, from South Park to Flight of the Conchords, have yuk-yukked over the idea of a person with both sets of genitals being able to have intercourse on their own, while artists have done their fair share of poking at and playing with the myth. (See here for an intersex woman’s take on Middlesex.)

On this issue the ISNA is emphatic: “The terms [‘hermaphrodite’ and ‘hermaphroditism’] attract people with sexual fetishes and fantasies that, frankly, we as a patient advocacy organization are not interested in hearing from.” They therefore advocate expunging any terms related to “hermaphrodite” from all medical literature:

We think it is much better for everyone involved when specific condition names are used in medical research and practice… While some intersex people seek to reclaim the word “hermaphrodite” with pride to reference themselves (much like the words “dyke” and “queer” have been reclaimed by LBGT people), we’ve learned over the years it is best generally avoided, since the political subtlety is lost on a lot of people.

Meanwhile, in an Op-Ed piece appearing yesterday in Spiegel International, Agius argued, “…real progress for intersex people is not measured through the number of available labels but through an end to the human rights breaches currently being inflicted.”

Indeed, the new German law is just the tip of the iceberg. Considering that one in every 2,000 infants is born with an intersex condition, shame-induced secrecy continues to be an abysmal problem. The rights and concerns of those with intersex conditions receive far too little attention. (I was completely uninformed until I met Dreger ten years ago at the conference Surgically Shaping Children.) Whatever the legal specifics, Germany’s new law will hopefully promote awareness above all else, and in more ways than one.

 

 

 

Doctor Tries to Be Hip And Misses

21 Jul

spine(Image by Katie Cowden used under CC license via)

 

Fifty-five year-old Terry Ragland of Tennessee recently sought medical attention for lower back pain at her local orthopedic center. She was introduced to Dr. Timothy Sweo, who ordered x-rays. After analyzing the results, Sweo concluded that the pain was caused by a curve in the spine called lumbar lordosis. He delivered the diagnosis to the patient by saying plainly, “You have ghetto booty.”

Lumbar lordosis is a severe curvature of the lower spine most visible from the side and it can be caused by a variety of a factors. “Ghetto booty” is, according to the most popular Urban dictionary definition, “a term used when you see a girl with a firm, big, tight packed ass. {Most black girls have ghetto booties}.” In other words, it’s slang for simply having a big butt.

For a medical professional to use the term is fantastically patronizing at best. For a white male medical professional to use racially-charged sex slang with a black female patient he has only met once before is jaw-droppingly gauche. His attempted apology to Ragland via letter does not help his case: “I was trying to take a technical conversation regarding your lower back and make it less technical.”

Presuming orthopedic patients are unable to comprehend medical terms like “lumbar lordosis” is ludicrous. After a month into my first limb-lengthening procedure at age 11, I could explain the difference between lordosis and scoliosis, a corticotomy and an osteotomy, and I could name every bone in the human body. I wasn’t exceptional – I just wanted to understand the world I was living in, like every one of my fellow pediatric patients. Priscilla Alderson’s excellent book Children’s Consent to Surgery presents overwhelming evidence that child patients are far more aware than adults tend to give them credit for. And Ragland is not a child.

“It says to me that he doubts what type of intellect I have, how intelligent I am to be able to understand what he conveys to me in a medical term,” Ragland told reporters.

While Sweo’s condescension comprises a particularly stunning mix of nasty prejudices, he is hardly the first doctor to speak disrespectfully to a patient. Medical specialists are renowned for being scientifically brilliant but socially inept. After making you sit in the waiting room, sometimes for several hours, they swoop in, keep their eyes on your body or the floor, bark a few questions at you, rattle off some orders for the nurse to take down, and swoop out again.  The patient is supposed take solace in the fact that it is all a sign of how important the doctor is.

Since this stereotype has become so pervasive, some medical professionals do make earnest attempts to shatter it, but their success varies. Some try through their body language and demeanor to give you the sense that they are genuinely listening and care about your all-around well-being. Others try by jamming a few blunt jokes into your narrow time slot. It gives you the sense that they’ve just watched Patch Adams and decided that being a clown is the perfect defense against being accused of coldness, so let ’er rip! Your body, your condition and your diseases are hilarious!

Years ago I attended a conference where an orthopedic specialist did a presentation on achondroplasia and said with a smile, “The short bones cause the average-length muscles on achondroplastic people to bunch up so that they look like the Michelin Man!”  He clicked forward to a slide featuring a list of achondroplastic symptoms with “Michelin Man look” featured at the top.  He was obviously very proud of having come up with this description.

I was the only person in the room with achondroplasia, and I had to kick my friend sitting next to me because he couldn’t stop giggling at the surgeon’s cluelessness. The Michelin Man?

Indeed, the most exasperating aspect of the Dr. Sweo case is that he appears to genuinely believe that his comments might have been helpful. Usually it is easier to engage in productive discourse with someone whose intentions are good than with someone who aims to hurt. But in light of his oblivious apology, it seems Ragland has a better chance of getting through to other, more perceptive doctors via the media than to Sweo via complaint.

I have lumbar lordosis.  It’s one of the primary symptoms of achondroplasia and it’s why I had to undergo spinal surgery last year.  I could have crashed this site with a list of all the off-putting doctors and healers I encountered, as well as the sarcastic jokes my closest friends came up with to keep me sane.  As Ragland files a formal complaint with the Tennessee Department of Health, there will inevitably be some backlash about PC culture gone mad and minorities being too sensitive and humorless.  But more power to her for sticking up for herself, and for patients everywhere.

 

 

Happy Halloween

24 Oct

As of tomorrow, I have to go on medical leave and take a break from blogging for hopefully just a short while.  So, in the spirit of season, I’ll leave you with a re-run of my old post, “Curiosity Kills the Rat.”  Happy Halloween and be back soon!

CURIOSITY KILLS THE RAT

“All the freaky people make the beauty of the world.”

— Michael Franti

Fourteen years ago, I made a trip to Hot Topic—that quintessential 90s chain store for all things goth—in search of some fishnet stockings for a friend.  It was my first visit to the store since I was back in a wheelchair for my third and final limb-lengthening procedure and the narrow aisles prevented me from venturing beyond the entrance.  My first time in a wheelchair, from ages 11 to 12, had been a completely humbling experience as I was forced to see how very inaccessible the world is for the non-ambulatory.  This time around I was battling the hot-cheeked self-consciousness that adolescence attaches to any signs of dependency. 

As I tried to look casual while flipping through black gloves, black stockings, and black dog collars, a guy approached me sporting crimson hair, eyebrow rings, an employee badge and a smile.  “This is store is easily adjustable,” he grinned, and with that he began shoving aside the display cases and clothes racks—which were, like me, on wheels—clearing a path for me right through to the back and taking little notice of the other shoppers, some of  whom took one to the shoulder.  It was one of those crushes that disappear as quickly as they develop but leave a lasting memory: my knight in shining jewelry.

Thanks to experiences like this, I have a special place in my heart for the acceptance of physical differences that can often be found in the subcultures of punks, hippies, and goths.  From the imagining of monsters to the examination of anything taboo, counter-culture is often unfazed by physical qualities that fall outside of mainstream beauty standards.  The first kid in my high school who chose not to stare at the external fixators on my arms but instead held the door for me had green and purple hair.  About a month after my trip to Hot Topic, I showed a death-metal-loving friend my right fixator (shown above) for the first time, with the six titanium pins protruding from open wounds in my thigh.  He grinned, “That is the ultimate piercing, man!”  He hardly could have come up with a more pleasing reaction.  That my wounds were cool instead of “icky” or “pitiful” was a refreshing attitude found almost exclusively outside mainstream culture.  This attitude more readily understands my belief that my scars are merit badges I earned, not deformities to erase. 

However, this tendency toward decency over discomfort is just one side of the alternative coin.  Every subculture has its strengths and its weaknesses, and for all the freaky heroes I’ve encountered, I’ve also met plenty whose celebration of difference devolves into a sick fascination with the grotesque.  “Weird for the sake of weird” is progressive when it asserts that weird is inescapable, that it is in fact as much a part of the natural order as any of our conventions, and when it serves as therapy for the marginalized.  But it is problematic when it involves self-proclaimed artists using others’ reality as their own personal toys.     

In a previous post, I referred to a friend of friend including me in an Internet discussion about limb-lengthening.  His comments were in reaction to a photo of a leg wearing an Ilizarov fixator that had been posted on a Tumblr page focused on the wonders of the world.  There are countless sites like it, where photos of conjoined twins, heterochromatic eyes, intersexual bodies, and medical procedures are posted alongside images of animals, vampires, robots, cosplay, self-harm, manga and bad poetry.  I get it.  The world is “crazy” and it’s all art.  But if that’s not a freak show, what is? 

Disabled people are no longer put behind glass or in the circus—at least not in the U.S., Canada or Western Europe—but many people still believe they reserve the right to stare, both in public and on the Internet.  Whether under the guise of promoting diversity or admiring triumph in the face of adversity, they suppress any realization they may have that no one likes being stared atUnless it’s on our terms.  

I see endless art in my medical experiences and it can be so therapeutic.  During my first limb-lengthening procedure I also had braces on my teeth, leading my dad to observe, “She’s now 95% metal.”  Kinda cool.  During my third procedure, I had Botox injected into my hips twice to paralyze my muscles lest they resist the lengthening.  At the time, when I along with most people had no idea what it was, it was described to me as “basically the most deadly poison known to man.”  Whoa, hardcore.  When I happened upon photos of my anterior tibialis tendon graft surgery, I was enthralled: “I’m so red inside!”  And when a fellow patient recently alerted me to the fact that a high-end jeweler designed a bracelet strongly resembling the Ilizarov frame, I laughed my head off.  Almost all of us like looking at our bodies, and perhaps this is especially so for those of us who have had real scares over our health.  It’s a matter of facing our fears and owning it.  But no one likes the idea of others owning it.  This subtle but severe preference, this desire for dignity determines the difference between human rights and property rights. 

Two years ago, NPR featured a piece by Ben Mattlin, who is non-ambulatory and who said he used to be uncomfortable with the idea of Halloween and its objectification of the grotesque.  From my very first costume as a mouse to my most recent stint as the Wicked Witch of the West, my love of Halloween has not so much as once flickered, but his point is worth discussing.  Costume play, Halloween and any celebration of “weird” that is primarily attention-seeking inherently assumes there is a “natural” basis to be disrupted.  (And all too often Halloween devolves into offensive imitations of all sorts of minority identities.) 

I have my own collection of artsy photos stolen off the Internet that I use as screensavers and montages for parties, but they do not include photos of bodies taken outside the context of consensual artistic expression.  Re-appropriating a photo in a medical journal for a site about all things bizarre is protected under freedom of speech, but it can feel like disregard for consent.  And in any case, such xenocentrism will always be just as superficial as the status quo it seeks to disrupt.

When conjoined twins Abigail and Brittany Hensel agreed to be interviewed once—and only once—for a documentary about their lives (which I highly recommend), they explained that they don’t mind answering strangers’ questions at all.  (Ben Mattlin has said the same, as do I.)  What they hate more than anything is being photographed or filmed without permission.  While attending a baseball game outside their hometown, a sports film crew quickly directed their attention to the girls.  Even though they were already being filmed by their own documentary team, the stranger camera’s invasive, presumptuous stare ruined the day for them. 

Sensitivity toward others’ experience with medicine and death should never kill the discussion.  These discussions are imperative and art is the most glorious way we relate to one another.  But just as there’s more to good manners than simply saying “Please,” there’s more to genuine learning and artistic expression than poking at anything we can get our hands on.  Nuance, deference and respect are prerequisites for anyone with artistic or scientific integrity not only because they are the building-blocks of common decency, but because history has shown that curiosity will more likely harm the rat than the cat.

 

 

Biology and “The Imprecision of Stereotypes”

16 Sep

 

This week the British newspaper The Telegraph asks:

Ever wondered why men can’t seem to tastefully decorate a house?  Or have a tendency for dressing in clothes that clash?  And why, for that matter, can’t women seem to hack it at computer games?  Now scientists claim to have discovered the reason: the sexes see differently.  Women are better able to tell fine differences between colors, but men are better at keeping an eye on rapidly moving objects, they say.

Professor Israel Abramov and colleagues at the City University of New York reached their conclusions after testing the sight of students and staff, all over 16, at two colleges…

The authors wrote: “Across most of the visible spectrum males require a slightly longer wavelength than do females in order to experience the same hue.”  So, a man would perceive a turquoise vase, for instance, as being a little more blue than a woman who was looking at it too.

Abramov, professor of cognition, admitted they currently had “no idea” about how sex influenced color perception.  However, writing in the journal Biology of Sex Differences, he said it seemed “reasonable to postulate” that differences in testosterone levels were responsible…

Men can’t perceive colors as deftly as women can.  That’s why all the great Western painters like Van Gogh and Cézanne and Leonardo and Picasso and Renoir and Monet and Munch and Vermeer and Kandinsky and Matisse are female.  And all the major fashion designers of the last century like Hugo Boss and Karl Lagerfeld and Gianni Versace and Giorgio Armani and Calvin Klein and Ralph Lauren were women.  Oh, wait. 

Maybe the study meant to say testosterone only triggers color ineptitude when male ears register the words “home decorating.”  Or that male color perception improves when money is involved. 

Or maybe The Telegraph author was exaggerating just a bit.  Tacking jazzy headlines onto reports of scientific studies are all the rage these days, no matter how much they distort the findings.  In June, Medical Daily ran an article under the title, “Racism Is Innate.”  Innate means, according to my biologist father, “present at birth,” so this seemed like a call to toss all those No child is born a racist buttons onto the trash heap.  Except that anyone who bothered to read the article would discover that the study simply concluded that brain scans of adults show simultaneous activity in the centers that process fear and emotion and those that differentiate between familiar and unfamiliar faces.  The idea that fear of the Other can be neurologically mapped lends itself to a great deal of speculation and debate, but nowhere did the study claim that racism is present at birth. 

Such truth-stretching borders on mendacity, yet it pervades the science sections of so many newspapers.  Scientific studies are supposed to be free of bias, but the news media is severely biased toward publishing whatever will grab readers’ attention.  As several researchers have pointed out, differences between the sexes are currently considered a much more interesting discovery than no difference, so publishers often remain silent on an issue until they find a study that provides the juicier headline, no matter how numerous the contradicting studies are.  When the market is left to decide, it chooses salability over comprehensiveness.

Such an irresponsible approach to science results in a gravely misinformed public.  I can’t tell you how many people have repeated the claim that our modern Western female beauty standards are “natural” because a round waist resembles pregnancy and triggers the male fear of cuckoldry.  No one seems to remember that several crosscultural studies discredited this idea years ago.  But how can anyone be expected to remember something the media chose not to promote in the first place? 

And forget about waiting until the study is corroborated.  In 2007, The Times ran a headline claiming that women are naturally drawn to the color pink because of our savannah foremothers’ need to gather berries while the men hunted.  The Times published the study without consulting any historians, who eventually pointed out that pink was considered a manly color as recently as 1918 until fashion trends changed.  Oops.

This doesn’t mean that we should, as Mitt Romney has demanded, “keep science out of politics.”  Science is impartiality and corroboration and the best method we have for sorting facts from wishful thinking—for preventing our emotional, egotistical needs from weakening our objectivity.  To me, science is the most humbling force in the universe because it demands we always admit what we do not know.  It prevents hasty conclusions based on flimsy evidence, gut feelings, and political agendas.  It questions crude stereotypes and discovers more complex structures. 

But according to pop science reporters and the researchers they choose to spotlight, nearly every single modern joke about the differences between men and women stems from millennia-old evolutionary adaptations.  (Indeed, the Telegraph article claims that the female proclivity for detecting color helped our foremothers with gathering berries.  Always with the damn berries… )  As stated in the graphic below, such reports all too often suggest that prehistoric society on the African savannah looked just like something Don Draper or Phyllis Schlafly would have designed:

Men hunt, women nest, and every macho social pattern we see today has been passed down to us from our prehistoric ancestors.  Even though historians find that these patterns, like our racial categories, are barely more than two centuries old, if that.  And that the gender binary is far from universal.  Misinterpreting scientific findings is just as dire as ignoring them. 

When it comes to what women and men can and can’t do, neuroscientist Lise Eliot notes, “Expectations are crucial.”  When boys and young men grow up in a culture that mocks their supposed incompetence in all things domestic (“Guys don’t do that!”), it comes as no surprise that only the most self-confident will pursue any interest they have.  Meanwhile, studies show girls perform as well as boys do in math and science until they reach puberty.  Maybe the onset of menstruation paralyzes our visual-spatial intelligence because we’ve got to get picking those berries, or maybe girls pick up on the not-so-subtle message that guys think coquettish beauty is more important than nerdy brains in the dating game.  (For more details on the sexism faced by aspiring female scientists, see Cordelia Fine’s excellent book, Delusions of Gender.)  In her research, Dr. Eliot finds only two indisputable neurological differences between males and females:

1) Male brains are 8% to 11% larger than females’.

2) Female brains reach maturation earlier than male brains. 

All other neurological studies that find major differences between the sexes are studies of adults: i.e., the people most shaped by their culture and society.  Only cross-cultural studies of adults can isolate nurture from nature.  In any case, Eliot is a proponent of neuroplasticity, the idea that the pathways and synapses of the brain change depending upon its environment and the neural processes and behaviors it engages in.  In other words, painting or gaming from an early age or frequently throughout your life will condition your brain to do these tasks and related ones well.  It explains why the gender roles of a given time and place are so powerfulwhy mastering unfamiliar tasks is an uphill climb for men and women but also why countries committed to equality have the narrowest gender gaps. 

“Plasticity is the basis for all learning and the best hope for recovery after injury,” Eliot writes.  “Simply put, your brain is what you do with it.”  For more, see her brilliant parenting book, Pink Brain, Blue Brain: How Small Differences Grow into Troublesome Gaps—and What We Can Do About It.   

But I’ll never believe that a neuroscientist has all the answers.  I live in a country that showed the world the dangers of hastily trying to trace all social patterns back to biology.  As a result, the media here in Germany is usually much more reticent to casually toss around arguments like those in The Telegraph or The Times or Medical Daily.  Natural scientists have made discoveries like neuroplasticity and limb-lengthening that are crucial to progress, but social scientists have discovered that equality and empathy are crucial to any society that values peace and respect over power and greed. 

Or, in other words.

 

 

Germany Rules on Male Circumcision

26 Aug

Justice(Image by Viewminder used under CC license via)

 

We’ve been waiting all summer for this decision.  On Thursday here in Berlin, the German Ethics Council ruled that male circumcision is legally permissible without a doctor’s order, but several conditions must be met:

    • Both parents must be in full agreement.
    • All possible risks to the procedure must be explained in full detail.
    • Local anesthetics must be an option.
    • The procedure must be certified by a medical professional.

Some of these requirements, especially the last two, go against what some fundamentalist religious leaders mandate.  Why all the fuss?  In Europe, where female genital cutting is illegal, male circumcision is only common in Muslim and Jewish communities.  Last year, a German court in Cologne ruled that the circumcision of an underage male constitutes aggravated assault and battery, and the debate has been raging ever since.  It has split the nation into two parties: Those that see the procedure as cosmetic at best and mutilating at worst, carried out on patients too young to give consent, versus those that believe any ban on age-old rituals and tribal markers constitutes religious and/or ethnic persecution.  That the ritual German lawyers sought to ban is a Jewish custom makes it a particularly sensitive case here.

When we hear stories of female genital cutting in Africa, Westerners are generally horrified.  But few in the United States understand that many Europeans gape at our 60% rate of male circumcision and consider it to be of course not quite but almost as cruel.  “How on earth could parents do that to their baby boy?!” is the reaction I get from the vast majority of Christian and non-denominational European males I talk to.  They are much more prone to believe studies citing the problems it can cause—for example, a supposedly higher rate of dyspareunia for women who have intercourse with circumcised men—than studies that downplay such fears.  I usually admit to them that, because it is so very common where I come from, I’d never given it much thought beyond those pop culture jokes about what looks better.

Which just goes to show how powerful cultural customs and values can be.  One culture cringes as the other shrugs.  Both female and male genital cutting involves groups that say we should protect the parents’ right to choose what they think is best for their children without government interference, while the others say the government should protect children from procedures that offer no medical benefit before they are old enough to decide for themselves, regardless of what their parents want.

I’ve written before that as someone who’s undergone limb-lengthening, I know how complex decisions about body alteration can be.  Determining an appropriate age of consent for surgery can be even more complicated.  But also due to my experience, I wince along with Jessica Valenti when parents choose procedures for their children that offer no real medical benefit.  While discussing circumcision, my European friends argue that patients should reach the age of consent before undergoing any procedure that, unlike limb-lengthening, does not become more medically complicated with age.  Should courts ever rule this way, this will inevitably lead to bans on juvenile nose-jobs like the one Valenti cites.  But then what about ear-piercing? 

Years ago, I was a panelist at a conference called “Surgically Shaping Children” at the Hastings Center, a think tank for bio-ethics, where we addressed elective procedures such as limb-lengthening on dwarfs and determining a gender for intersex children.  After a two-day debate and a resulting book, we concluded that the best way to prevent parents from making decisions that could be damaging to their children is to keep both the parents and their children as informed as possible about every issue that’s at stake: medical facts, cultural identity, individual identity, and agency.  The German Ethics Council’s ruling also implies that such comprehensive understanding is necessary. 

I think a ban on circumcision would have created more cultural resentment than understanding.  But the scientific community, and society as a whole, should take the place of the legal system in helping parents understand all the complexities of altering a child’s body without a medical purpose.  There may be no easy answer, but the discussion has got to keep on going.

 

 

Body Image Part IV: My Choice and Your Choice Entwined

24 Jun

Copyright Folke Lehr(Image ©Folke Lehr)

 

I began The Body Image Series with this question: If we were fully convinced that no one else cared one bit what we looked like, how much would we care?  Would we have any reason to envy conventionally attractive people?  Would weight loss have anything to do with waist size?  Would limb-lengthening still touch on the idea of “blending in”?

 ***

Ten years ago, I attended the premiere of HBO’s Dwarfs: Not A Fairy Tale along with the other subjects of the documentary.  Upon seeing me, one of the men with achondroplasia asked his friend, “What’s she doing here?  She’s not a dwarf.”

“She had limb-lengthening surgeries to make her taller,” his friend murmured.

 “What?!” he exclaimed. “She cheated!”

I felt myself blush before I could think of what to say.

Immediately, a woman with diastrophic dwarfism, the shortest of all of us, turned to me and said, “I’m on your side, Honey.  No way did you cheat.”

Part of me finds it hard not to laugh when others dismiss limb-lengthening on dwarfs as a “quick fix.”  Breaking bones, stretching them over a three-to-five-month period and then waiting for them to heal for another ten months is not exactly comparable to a boob-job done over the weekend.  Then again, you’d better have a damn good reason to be willing to go through something so intensive and risky.  So, did I do it to function better or, as a former president of Little People of America insisted, to “blend in”? 

I did it to access public facilities—desks, shelves, cars, bikes, kitchen counters, cash registers, ATMs, exercise equipment—without any modifications.  I did it to use public seats—classroom chairs, restaurant chairs, theater seats, train seats, plane seats, toilets, friends’ furniture—without needing foot stools to keep my legs from dangling and falling asleep.  I did it to correct some of my lordosis, so that I wouldn’t need to carry backrests with me to every desk chair I sat in.  I did it to have the extra leverage enabling me to lug more around: bigger suitcases, bigger shopping bags, bigger backpacks, bigger children.  I did it to take bigger steps when walking, so I could cover more ground before I got tired.  I did it so that my weight would be slightly more evenly distributed, making spinal compression less of a danger.  I did it to stop straining to reach the back of my head when brushing my hair.  I did it because the patients I met who had done it were just as happy as those who had not.  Looking back on it all, this was definitely reason enough for me, regardless of whether or not it is for others.  But I can’t just leave it at that.

In my last post, I argued why there is no right way to hate your body.  In my experience, you can take dramatic measures to alter your body without hating it.  Indeed, the work you put into it can and should be an act of love, not desperation.  The night before my first limb-lengthening surgery, I kissed my old legs goodbye.  I was willing to let them go, but I kissed them all the same.  Yet many if not most outsiders assume that dwarfism is a visible difference the patient must want to erase.  After all, trying to argue that you don’t want to blend in, even though you will blend in, sounds like you’re trying to circle a square. 

So why not just say that limb-lengthening was my personal choice and my choice doesn’t affect anyone else?  But it does.  By blending in, I automatically relieve myself of a good deal of prejudice, of stares, of awkward reactions.  I have fewer questions to answer from people on the street and fewer chances to educate them.  By blending in, I’m breaking ranks with the dwarf community to some degree.  That’s nothing to sneeze at when considering that before the Americans with Disabilities Act of 1990, dwarfs had an unemployment rate of 85% in the U.S. all because of lookism.  By blending in, I am contributing to the trend that may make limb-lengthening a fashion for people with dwarfism.  Both politics and beauty standards measure strength in numbers. 

In the late 90s, my first femur surgery was filmed for a feature about limb-lengthening on the American news show 20/20.  The interviewer asked a 12 year-old patient with dwarfism, “Did you do it to look normal or to function better?”

Without missing a beat, the boy answered, “So that I could function better.  I don’t care how I look.  I just want to do what everyone else can.” 

Sitting at home watching, I raised my fist in solidarity and whispered, “Right on, kid.”

In the follow-up commentary, Connie Chung reported, “He has since finished the procedure to combat his dwarfism.”

I shot up in my seat in disbelief: “COMBAT?!” Was that the automatic assumption?  I wasn’t in a battle against my dwarfism, and obviously neither was this patient.  I was working with my body, not against it!  I realized then that it was important that others knew this if they were going to know that I chose limb-lengthening.

We may someday live in a world in which every candidate for limb-lengthening makes the same decision I did and in doing so, makes the world a less physically diverse place.  I will accept such a world, since my own efforts to function better have helped contribute to it.  But I won’t make any arguments advocating such homogeneity.  If my dwarfism and limb-lengthening have taught me anything, it is that it’s far more important for me to argue that beauty is about so much more than blending in. 

Deep down inside, every one of us wants to be conventionally attractive to some degree, because life seems easier that way.  We love the idea of throngs of people admiring us, envying us, falling hard for us at first sight.  It makes us feel fantastic on a visceral, heart-thumping level to be praised for our looks.  But if everyone agrees that there’s more to love and romance than conventionally good looks, what is the point of having broad appeal?  During the years when my curly hair reached my backside, I enjoyed the compliments but they were always the same, regardless of whether they came from friends or strangers.  My short, round achondroplastic hands, meanwhile, have garnered a lot more attention to detail.  My dad always called them “starfish hands.”  A guy in college examined them and disagreed: “They’re Maggie Simpson hands.”  Another amended it with a giddy squeal, “They’re finger-painting hands!”  When I began my final limb-lengthening procedure, a guyfriend in high school nicknamed me “Legs” because I had the most expensive pair around.  Who needs broad appeal when you have genuine affection?  What better proof is there of such affection, of people’s capacity to look beyond convention than their fearlessly falling in love with features they’ve never seen before?

If I deeply regretted having dwarfism, then limb-lengthening would indeed be an extreme measure taken to offset severe personal insecurity, and that would be a major cause for concern. Hating my looks so profoundly would impact other dwarfs’ perception of their own looks.  This is why I blog.  I don’t want to live in a world where anyone is pressured to change their body just to be accepted, and I don’t want my story to be misused to contribute to the forces pushing the world in that direction.

This is not to say every person who is born on the margins should turn their life into a 24-hour political cause.  Trans individuals should never have to answer invasive questions about their bodies any more frequently than cis individuals should.  LGBT people should never be pressured to come out.  Black Americans shouldn’t have to put up with strangers and acquaintances trying to touch their hair all the time.  The right to privacy is a human right. Your sex life, your income, your medical records, and your body are all matters you shouldn’t ever have to submit to anyone’s microscope if you don’t wish to.  But if we do open our mouths, we have to take responsibility for the consequences.   

When I choose to talk about my body and my choices, it feels to me like I’m talking only about myself.  But others are listening for how it all affects them.  If they don’t care about me personally, it’s their only reason for paying attention.  It’s the only reason we read novels and newspaper articles and blogs about strangers’ lives.  We’re searching for something we can relate to, and if we can’t relate, we at least want to know how other people’s choices are shaping the world we live in.  Opinions such as “I was so gross when I weighed x pounds,” or “I can’t wait to get rid of these hideous scars” both reflect and influence the society comprising us all.  We love taking credit for our words when others agree or are inspired by them.  But if someone raises the possibility of our statements having a negative impact on others, the temptation to shirk all responsibility for others is strong.  But we can’t ever shirk it.  That’s cowardly.

This doesn’t mean we must accept others offhandedly judging our most complex decisions.  Unfortunately, no matter what we say or how carefully we try to shape the argument, there will always be those out there who judge before hearing the end of the sentence.  Putting more energy into brandishing our opinions than admitting what we don’t know is also cowardly. 

A friend I met in the hospital was ten years-old and in the midst of limb-lengthening when a woman with dwarfism approached him at a train station and told his mother, “You are RUINING your child’s life!  How could you do this to him?!” 

When the conversation was over, my friend’s mom asked him, “So what did you think of that?”

He replied, “I think you shouldn’t talk to strangers.” 

We are talking to strangers when we publicly discuss our personal decisions, and the Internet is blurring the lines between public and private discussions faster than ever.  As decision-makers, we cannot discuss our choices and our views free from any responsibility for the effect they will have on others.  As observers, we cannot accurately judge others’ decisions at face-value, free from the burdens of learning. 

During the seminars I taught about dwarfism and limb-lengthening to classes of middle school and high school students, I would write the following quotation on the chalkboard, paraphrased from a French magazine article in which I was featured as a child: 

Society does not physical accept differences easily.  Without a doubt, that is society’s fault.  But who should change?  Society or the dwarf?  For the dwarf to change, she must undergo years of painful surgeries and intensive physical therapy, risking many complications.  For society to change, it must alter its way of thinking.  Who suffers more in the change?  Which change is harder to achieve?

Every single one of the fifteen-odd classes I taught gave the same answer.  To the first question: The dwarf suffers more.  To the second question: Society is harder to change.

But my experiences with dwarfism and limb-lengthening have inspired me to try to change both.  As best as a bossy girl from Long Island can.

 

 

Body Image Part III: Mirror Etiquette

17 Jun

mirror(Image by Trixi Skywalker used under CC 2.0 via)

 

After picking apart the unhelpful things we often say about others, I now move on in the third installment in the Body Image Series to the unhelpful ways in which we talk about ourselves…

 ***

Two moments in the Wonderful World of Body Image:

ONE: A woman sitting in the waiting room at my surgeon’s office reveals a leg perfectly tanned, as well as dotted and streaked with fresh scars from an Ilizarov fixator.  Our surgeon walks by on his way to radiology and flashes her a grin: “Lookin’ great there with that fixator finally off!”  She calls after him without a hint of joking in her voice, “Yeah, but God!  What am I supposed to do with these hideous scars?!”  She has about a quarter as many scars as I do.

TWO: One of my mom’s oldest friends flips through a photo album with me from back when she and Mom were my age.  Every other photo of herself elicits a moan:  “God, look how fat I was!  Omigod, look at that tummy.  Ick, what a fatso!”  In every photo, she was thinner than I’ve ever been, save for my limb-lengthening years spent on heavy painkillers.

Trashing one’s own body in front of others is so commonplace in Western female culture, I’ve yet to meet a single woman who hasn’t done it at least a dozen times since puberty, if not yesterday.  But it should come as no surprise that whenever you talk about something as self-centered as your body image, your listeners instantaneously have a self-centered reaction, wondering how they fare in your line of judgment.  If you hate it on yourself, why would you think it looks good on others?  (Indeed, there are scores of studies showing that mothers who vocally criticize their own bodies have daughters with unhealthy body image.)  This is why trashing your own body is perhaps the most impolite, if not irresponsible, of all our social customs.

Eating disorder survivor Chloe Angyal has given us the revolutionary battle cry: “There is no right way to hate your body.”  This has to be true if we believe that everyone is beautiful in their own way­.  If we can’t swallow it, it means we can’t let go of competing with others.

In 2002, Pulitzer Prize winner Michael Chabon declined the invitation to be photographed for People magazine’s List of 50 Most Beautiful People, arguing that fitting the magazine’s criteria for the list shouldn’t in any way be considered an achievement: 

I don’t give a shit [about it] … I only take pride in things I’ve actually done myself. To be praised for something like that is just weird.  It just felt like somebody calling and saying, “We want to put you in a magazine because the weather’s so nice where you live.” 

I know only a few women who would pass up the opportunity to be rewarded for their looks as he did. 

Women usually trash their bodies in front other women not out of malice but because we are culturally conditioned to build close friendships by sharing our most personal feelings.  The (liberal) mantra, “Don’t bottle it up inside!” is a constant hammer to the floodgates.  And so we hear: “I can’t be seen without my makeup!”  “Why can’t my gray hair grow in evenly?”  “I’m so fa-a-a-at!”  Yet with all this sharing of body-oriented self-hatred, no one manages to make each other feel better. 

If I say, “God, I talk loud on the phone,” or “Yuck, you can tell I had no time to brush my hair!” anyone who disagrees with the complaint can say so, and anyone who agrees can tease: “Eh, we’ve gotten used it.”  If, deep down inside, my self-deprecation was a circuitous check to see if I really am that bad, I can consider if the teasing is a reason to try to change my habits.  Life is, after all, about learning how to be both a happier and a more tolerable human being. 

But bodies are different.  Any choices we have about changing them are limited, and they are entangled in visceral feelings about our attractiveness.  If I say, “Ugh, my dwarf cheekbones are so low!” or “My nose is so ugly!” no one should agree with me out loud.  Even if silently they do.  (I didn’t notice how low they were, but now that you point it out…)  The only acceptable confirmation of these statements must come in the form of protesting praise: e.g. “I love your nose, it reminds me of [insert name of famous and attractive person here].”  Otherwise, etiquette demands protesting the statement altogether: “No!  Your cheekbones aren’t low at all!”  This may or may not be a lie, but in any case, it supports the idea that low cheekbones are something to lament.  Anyone who wouldn’t think the cheekbones in question are low because theirs are lower suddenly feels paranoid, if not miserable.  So all this body trashing is an obstacle to honest sharing, rather than a path to it.    

And to complicate matters more, some share their deepest body image issues with each other and then use them against each other when feeling competitive.  (“I can’t believe he went for that fat/bony slob!”)  Anyone who obsesses about her body secretly knows how harshly she herself judges the bodies of others in moments of weakness (“At least I don’t look like that!”) and fears that others judge her the same way.  This is, of course, a chicken and egg scenario: maybe the self-hatred comes from judging others or maybe the judging others comes from self-hatred, but in any case, the only end to the cycle is to stop trashing bodies, both others’ and our own.

During my limb-lengthening procedures, my friends at the hospital would commiserate about all the things our bodies were going through.  (“Are your legs getting hairy, too?  The doctor says it’s because of the increased blood-flow caused by the healing.”  “Can you see inside your leg when they remove a pin?”  “Would you have your torso lengthened if you could?  I wonder how that would work…”)  But our complaints never touched on our looks.  Even in therapy group, all our venting was about pain, nausea, restrictions on movement, living away from home, dependency on others, or the procedure taking longer than it was supposed to.  All our jealousy was directed at those who had less pain or a quicker recovery.  Perhaps it was because we had enough to worry about trying to reach our physical therapy goals, keeping infections at bay, forcing ourselves to eat, and constantly trying to get comfortable.  Or perhaps it was because so many of us were pre-pubescent kids not yet initiated into the adult world of body competition.  Or perhaps beauty standards are automatically less restrictive for groups with true body diversity.  In any case, the woman in my surgeon’s office—who looked to be anywhere between 30 and 45—was the first patient I heard complain about what the procedure did to her looks.

We all want to be attractive, but the only way to avoid insulting others is to expunge everything that makes beauty a competition.  The editors at Offbeat Bride ban all discussions about weight loss or body insecurity on the forum, and I don’t think anyone has suffered as a result.  Celebrating more progressive, inclusive and creative beauty standards can be helpful—more on that next week—but minimizing the attention and importance we afford our lookist insecurities should be a goal, if anything because all this self-scrutiny is fantastically vain.  As Peggy Orenstein has said, mainstream girlie-girl culture too often mistakes self-absorption for self-confidence.  The most self-confident women I know obsess over their bodies at about the same low frequency self-confident men do.  And like the men, they don’t bristle or burst into tears at any form of affectionate teasing.

A healthy ego owns its fears instead of demanding others allay them.  Pointing out our own supposed imperfections can be constructive as long as it’s intended to elicit nothing but giggles, with no hint of fishing for compliments, of shaky self-esteem, or of competition.  In our high school yearbook, a friend listed under his Wishes For The Future, “Smaller ears, bigger teeth.”  And so I threw “Tiny Teeth!” back at him whenever he would shake his head at me and sigh, “Once again, you smile and your eyes get all thin and pointy!”  The harder I laughed at him, the pointier they got.      

As said before, when we tell our loved ones how beautiful they are, it’s a testament to the sum of their parts, to the combination of their perfections and imperfections.  When we’re mad about someone—not just attracted to them, but truly mad about them—their beauty makes them entrancingly divine and their flaws make them adorably human.  Perfect lips enveloping crooked teeth create the tension and contrast that makes the human body a work of art. 

Two moments in the Wonderful World of Healthy Relationships:

ONE: A friend is leading a seminar about American immigration and heritage.  “People from Scandinavia tend to be blond-haired and light-skinned, but they tan.  People from the British Isles are so pale, they look like they just crawled out from under a rock.”  She smiles at me.  “You’re British, aren’t you?”  My laughter is drowned out by my classmates’.

TWO: A friend was told by her fiancé: “You have such huge eyes and a round face.  It’s like Thomas the Tank Engine.”  She prints out a photo of the train and mails it to him while he’s away on a business trip, so that he won’t forget her.

 

 

Body Image Part II: The Rules for Snark

10 Jun

(Image by Stephen Alcorn © 2003 http://www.alcorngallery.com)

 

Last week I went after talking about others’ bodies for the sake of analyzing what you can’t be attracted to.  Today I’m going after talking about others’ bodies for the sake of musing, or amusement…

Anyone who insists they never make fun of others behind their back is lying.  We all do it, and to the extent that snark is now rivaling porn as the Internet’s raison d’être.  Every bit of our outward appearance—our fashion choices, our speaking styles, our assertiveness or timidity—it’s all out there for others’ scrutiny and all of us pick targets when we’re in the mood, sometimes at random, sometimes with a purpose.  Just take the example of weddings.  I bet there’s at least one wedding you’ve seen that looked ridiculous to you.  Alternative brides think, Wear an expensive dress if that’s what you’ve always wanted, but it’s still vulgar materialism.  And the mainstream brides think, Dont wear a white dress if you don’t want it, but you just want attention for being anti-everything.  While others simply think, Purple.  Yuck.  Or something to that effect. 

In wedding planning as in our everyday fashion, what we choose is a comment on what we don’t.  No one’s choice is in isolation of everyone else’s.  To dress like a punk or to dress like a cowboy, to speak a local dialect or to speak like a newsreader, to try to fit in or to try to stand out are all decisions we make that usually reflect both our tastes and our beliefs.  We give others’ decisions either the thumbs up or thumbs down accordingly.  As I’ve said before, it’s fair game when beliefs are targeted, because we should all take responsibility for our beliefs.  But too many of us make no distinction between the elements of someone’s appearance that reflect their beliefs, and the elements that reflect their biology.  

Many of my friends and family, along with most commenters on TV or online, see little difference between making assumptions about others’ clothes and making assumptions about the bodies they cover.  Just as they’ll assume the slick suit must belong to a businessman and the lady in shorts and sneakers is American, they’ll assume the particularly skinny woman must be anorexic, that the man whose hands shake must be an alcoholic, that the young woman who collapsed must be either diabetic or pregnant, that the large child over there getting his breast milk is obviously too old for that, that chubby guy over there is certainly overweight and should lose a few pounds, that the poor kid with acne isn’t using the right medicine.  Sometimes these flimsy diagnoses are voiced as expressions of sympathy or intellectual exercises à la Sherlock Holmes, sometimes they are dripping with self-aggrandizing pity or snarky complacency.  They are always unjust because, unlike quips about clothes or tattoos or cell phone ringtones, comments about another’s body have little to do with choices anyone has made. 

As someone who’s undergone limb-lengthening, I can of course attest that there are a few choices we make about our appearance.  But while I chose to try to add as many inches as possible to my height, I didn’t have much of a choice about how many inches I could go for.  (I gave all I could in physical therapy, but in the end, my ticked-off muscles stiffened and decided the limit for me.)  Nor did I have much of a choice about my anterior tibialis tendons severing on both legs, which now makes me stumble on average every few weeks and makes dismounting from a bicycle dangerous.  (After two surgeries to repair the tendons and three years of physical therapy, they remain weak.)  Nor have I ever had any choice about my hips swaying when I walk because the ball-and-socket hip joint in achondroplastic people is shaped like an egg-and-socket.  Skinny friends with hypoglycemia, heavy friends with slow metabolism, and friends with diastrophic dwarfism—whose growth plates do not respond to limb-lengthening—can also attest that any choices we make about our bodies are always limited.  Discussing these choices is important, but strangers assumptions about them are usually way, way off.

It is because I know so many kind, loving people who analyze strangers bodies that I wasn’t at all surprised by the nasty ruminations over her “puffy” appearance that Ashley Judd so awesomely bucked in Newsweek earlier this year.  And I’m only half-surprised by the website Too Big For Stroller, where people post street photos of children who appear to have outgrown the transport and smirk about what idiotic parents they must have.  In his essay, “Broken Phantoms,” Robert Rummel-Hudson writes beautifully, harrowingly about the unfair judgment strangers often heap on individuals with rare disabilities whose symptoms are less visible.  He went after the Too Big For Stroller crowd and summarized their defense arguments thusly: 

However many kids with invisible disabilities might be made fun of or hurt by that site, they are acceptable collateral damage, because some of them are probably lazy kids with weak parents, and they must be judged.

“Acceptable collateral damage” is the word I’ve been searching for my whole life.  It’s how Jason Webley downplayed the rights of “the few conjoined twins in the world” in light of his Evelyn Evelyn project.  It’s how so many minorities are dismissed as annoyances in our majority-rules society by the vacuous, relativist claim, “Everyone’s going to be offended by something.”  Which is another way of saying, “We can’t consider everyone’s rights.” 

All of us make automatic, silent assumptions about others’ bodies, often trying to figure out how we ourselves measure up, because we are all insecure about our bodies to some degree.  But the ubiquity of these thought patterns and the rate at which they are voiced is the problem, not the excuse.  There’s probably a list of catty things I’ve said the length of a toilet roll, but I try to stop myself from diagnosing strangers’ bodies, if anything out of awareness of my own vulnerability to inaccurate assumptions.  A few years spent in and out of hospitals also taught me what the hell do I know about where they’re coming from, and we all think enough unproductive thoughts about others’ physical appearance as it is.  In an essay about me and my scars, Arthur W. Frank writes that when we see someone who looks either unattractive or pitiful to us, our first thought is, “I’m glad that’s not me.”  And our second thought is, “But if it were me, I’d get that fixed.”

This is, of course, more than anything ahope.  We hope we would be different in the same situation.  But we’re afraid we may not be, and this fear causes us to quickly deflect the problem onto someone else.  Why not the person who just upset our delusions of normalcy?  So we and our supposedly meritocratic society nurture this idea—“I wouldn’t be like that”—as a justification for being judgmental.  Whether or not we voice these assumptions is indeed a choice we make, and whether or not we add any hint of judgment is yet another.   Whether or not this is fair is often debated on a case-by-case basis, but anytime anyone insults someone else’s body, it is a demonstration of their own insecurities.  Period.   

We’re all constantly judging one another and judging ourselves in comparison to one another.  This can be fair game when we stick to focusing on the mundane decisions we all make.  There is a world of a difference between quipping about fashion choices with head-shaking amusement—Sorry, Eddie Izzard, but sometimes you do not know how to put on makeup—and allowing our personal insecurities to fuel pity or disdain for others’ apparent physical imperfections.  There is no fair way to trash someone else’s body because, for the most part, your own biology is neither your fault nor your achievement.

 

 

In Activism, The Medium Is The Message

6 Apr

 

An acquaintance recently referred to me in a discussion about limb-lengthening on a Tumblr page.  Having heard about my medical experiences from mutual friends, he insinuated that I may have been forced into it, reported the procedure is used to make people with dwarfism “look normal” and dismissed it as therefore morally wrong.

Around the same time that week, The New York Times featured a discussion regarding whether the Internet’s contributions to political discourse are always productive under the headline, “Fighting War Crimes, Without Leaving the Couch?”  The Internet itself is so multi-faceted it undoubtedly does as much good as harm.  Like all media, it has both cerebral and shallow corners.  And, as the Times piece reveals, there is a fine line between slacktivism and activism.  But the recent trend toward microblogging—Tweets, Facebook status updates, Tumblr—for political discussions is rife with problems.  For every productive comments thread I’ve read, there are conversations that never evolve beyond slogans, sneering, choir-preaching, or kneejerk reactions with most information based on hearsay.  Every single piece of information cited in the Tumblr discussion on limb-lengthening contained at least one factual error.  (More here on the fact that it was posted in the context of sick fascination rather than bio-ethics.)  That microblogging brings those who don’t have the time or energy to compose an entire blog post or article into the discussion is hardly a compelling argument, since it quickly extends to Those Who Don’t Have the Time to Research Or Think Much About the Issues. 

I’m quite used to having my story cited in debates because of the exposure I’ve allowed it.  I love debate like other people love video games and limb-lengthening is a contentious issue.  (Just ask my friend who witnessed a stranger with dwarfism approach his mother and demand, “How could you ruin your child’s life like this?!”)  When ignoring the broad-sweeping nature of his assertion, I consider this friend of a friend’s kneejerk opposition to cosmetic surgery preferable to, say, the handful of journalists who have interviewed me and chosen to portray limb-lengthening as a painless miracle cure for anyone unhappy with their size.  But reading his hasty dismissal of my seven-year-long experience based only on what our mutual friends had told him brought back memories of all the people I’ve observed summarizing deeply personal, overwhelmingly complicated decisions in 140 characters or less, both online and off:

“It’s been TWO months since she died.  He’s gotta move on.” 

“It was so selfish of her to get pregnant now with everything her husband’s going through.”   

“It’s absolutely horrible to abort a fetus that tests positive for a disability.  Who would do such a thing?!” 

“Only one girlfriend?  Well, then she’s not really gay.  She was just experimenting.” 

“It’s ultimately selfish to want a child with dwarfism.  You wouldn’t want to do that to a child.”

“No wonder she got mugged.  Any girl who goes hiking alone should know better.”

“It’s so stupid that women are supposed to be upset about not being able to have their own kids.  They could just adopt.” 

Assuming others’ motivations, knowing what’s best for everyone, passing on poorly researched information; too often gossip masquerades as political discourse, both in the media and at home.  We all feel compelled to have an opinion.  About everything.  The more noble root of this is the desire to actively take an interest in everything.  But that nobleness dies the moment we can’t be bothered to consider anything beyond our gut reaction before spouting off; the moment a desire to improve the world devolves into the simple urge to mark everything we see with our own personal “GOOD” or “BAD” stamp. 

Obviously, as a blogger I am constantly offering my opinions.  But I remain acutely conscious of my chosen medium, taking inspiration from Marshall McLuhan whose quote heads this post.  There is a difference between tabloids and broadsheets, between documentaries and reality TV, between a blog entry and a Tweet, and it’s not just big words: It’s the intellectual commitment required of the audience in order to consume.  True learning demands this commitment and risks upsetting our world view.  Voyeurism indulges our complacency and guarantees our prejudices will be cemented.     

Every blog post I put out is both a labor of love and a terrifying experience.  Every week I hear the imaginary voices of every individual who could in any way be implied in my arguments howling at me, “Who do you think you are?!”  The voices aren’t loud enough to scare me into silence.  But, combined with the inspiring examples set by my partner, my mom and dad, Ariel Meadow Stallings, Barack Obama and many others, they motivate my every edit of that girl in high school who was so well known for her righteous indignation that she was voted “Most Argumentative” in the yearbook.

That girl has made so many mistakes along the way.  I found out that posting your religious views online can earn you applause from strangers but cost you a friendship.  I’ve learned using the “I know someone who…” argument can offend or embarrass said person if you haven’t asked their permission, even when it’s intended as praise.  I’ve learned passion alone inspires your supporters but usually sounds like ranting to the unconvinced, especially on Facebook.  I’ve learned mass emails are not only passé outside the workplace but were never very popular to begin with.  (At least not among the recipients.)  I’ve learned to never read the comments section on YouTube unless I want to lose all my faith in humanity.

I intend to address all the reasons why I underwent limb-lengthening eventually, but at the moment I’m not sure yet if I can in anything less than the 13 pages I needed in Surgically Shaping Children.  I’m sorry to play Tantalus to those unable to shell out the cash for the book or find it at their library.  This undoubtedly limits the number of people I inform.  But, for now at least, I prefer to be held responsible for a few well-informed individuals rather than many misinformed ones.  And no matter how I end up condensing it, I know I won’t ever be able to fit seven years of limb-lengthening into one Tweet.    

 

 

Welcome to Painting On Scars

4 Feb

 

So you’ve heard that “Kids can be so cruel”?  What a cop-out.  Adults are cruel.  Kids are constantly blunt and sometimes mean-spirited, but they have the chance to grow up.  Turning 30 this year, I realize that I’ve encountered more ableism over the past 10 years than any other time in my life – online, at dinner parties, and during my four years as an undergrad at Bard College when it was consistently rated in one of the Top Ten Most Liberal Schools by The Princeton Review.  If I ever have children biologically, they will each have a 50% chance of inheriting achondroplasia from me.  Whether or not they have achondroplasia, I’m much more concerned about the adults they will encounter in their lives than the kids.

Today ableism – a.k.a. disability discrimination – ranges from the yuk-yuk objectification of freaks, to the sick fascination with medical realities, to personal phobias of looking weak or unattractive, to well-intentioned charity that is truly patronizing That this so often comes from those whose own experiences of marginalization would logically render them better candidates for empathy has inspired me to start this blog. 

There also aren’t enough blogs about dwarfism.  There are hardly any blogs about dwarfism beyond childhood.  The community of dwarfs who have undergone limb-lengthening is non-existent, as if we want to pretend we were never dwarfs in the first place.  And feminist blogs for and about dwarfs who have undergone limb-lengthening continue to elude my Google efforts.

While my own experience invariably influences my perspective, I refuse to argue only about issues directly related to dwarfism and limb-lengthening.  Without knowing the word for it, I was raised to believe that if you’re going to support the rights of one minority, you’ve got to support them all.  In the end, they’re all related.

So consider this blog a continued reflection on the issues I addressed in this book.  Or The Most Inclusive, Progressive Forum Ever!  Or just another reminder that whether you’re discussing a sex issue or scar tissue, the personal is inescapably the political.