Tag Archives: Body Image

Who Should Think You’re Beautiful?

11 Oct

Goodnight(Image by Aphrodite used under CC 2.0 via)

From the Archives

 

Should beauty pageants stay or go?  The New York Times tackled this question during the 87th Miss America Pageant.  Amidst all the discussions about deferential giggles and zombie smiles, I find myself echoing the conventional wisdom that Let’s face it, it’s all about the swimsuit round, and Caitlin Moran’s wisdom that You can call it the ‘swimsuit round’ all you like, but it’s really the bra and panties round.

A decade ago Little People of America entertained the idea of holding an annual beauty pageant, but it was swiftly nixed by the vast majority of members.  The inherent problems were pretty obvious: Isn’t being judged by our looks the biggest problem dwarfs face?  Do we really want to set a standard for dwarf beauty?  And if so, which diagnosis gets to be the standard?  Achondroplasia or SED congenita?  Skeletal dysplasias or growth hormone deficiencies?  Ironically—or perhaps not—there was also a widespread fear that heightism would dominate the judging.

What I find most unsettling about beauty pageants is not the nondescript personality types on display—although I am very concerned about that, too—but the idea that it is perfectly normal and okay to want millions of strangers to love your looks above all else. This idea seeps into every corner of Western culture, not just beauty pageants and women’s magazines. 

If you’ve ever entered “body image” into a search engine, it won’t take you long to come across the phrase You’re beautiful!  It’s everywhere, and it’s usually geared at anyone, particularly anyone female, who believes they fall short of the beauty pageant prototype.  You’re beautiful! is part battle cry, part mantra – a meek attempt to broaden society’s beauty standards and an earnest attempt to bolster individual self-confidence.  Super-imposed over flowers and rain clouds and sunsets and cupped hands, it becomes hard to tell the online empowerment apart from the online valentines. And as much as I admire the intentions behind it, I’m tempted to question it. 

Making peace with our bodies is important.  Diversifying our criteria for human beauty is necessary.  But why should we need to hear that we’re beautiful from someone we don’t know?  Of course we can never hear it enough from friends and lovers.  (I’ve heard it three times in the last 24 hours and I’m not giving it up for anything!)  But basing self-confidence in strangers’ praise upholds the notion that it is bad to be thought of as ugly or plain by people who don’t know anything else about you

We all have our secret fantasies about being gorgeous rock stars and princesses and Olympic heroes with throngs of admirers dying to throw their arms around us.  But, to echo Jane Devin, if most men can go through life with no one but their lovers daring to praise their looks, why do women still demand so much attention? 

This past spring Scientific American revealed that, despite how much our culture suggests that most of us need to hear over and over how attractive we are before we even begin to believe it, the average person overestimates their appearance.  This shouldn’t be too surprising. The world’s largest empire isn’t called “Facebook” for nothing.  And as the Scientific author pointed out, the vast majority of us consider ourselves to be above-average in most respects, which is statistically impossible.  He explains: 

If you think that self-enhancement biases exist in other people and they do not apply to you, you are not alone. Most people state that they are more likely than others to provide accurate self-assessments

Why do we have positively enhanced self-views? The adaptive nature of self-enhancement might be the answer. Conveying the information that one has desirable characteristics is beneficial in a social environment…  Since in self-enhancement people truly believe that they have desirable characteristics, they can promote themselves without having to lie. Self-enhancement also boosts confidence. Researchers have shown that confidence plays a role in determining whom people choose as leaders and romantic partners. Confident people are believed more and their advice is more likely to be followed.

So self-confidence is good and self-doubt is bad, both in love and in life.  And demanding strangers and acquaintances tell us that we’re beautiful is narcissism, not self-confidence.  In the words of Lizzie Velásquez, who was voted Ugliest Girl in the World on YouTube, “I don’t let other people define me.”

This is not to suggest a ban on praising anyone’s looks ever.  I still harbor adolescent crushes on a pantheon of celebrities, from George Harrison to Harriet Beecher Stowe.  But between the beauty pageants and the You’re beautiful! memes, it does seem that most of us still believe that having broad appeal is some sort of an achievement, as opposed to dumb luck.  And that for a woman, it’s an achievement worthy of mention on a résumé. 

In April, President Obama touted newly appointed Kamala Harris as “by far the best-looking attorney general.”  After dealing the president a well-deserved eye-roll, Irin Carmon at Salon suggested that before publicly praising someone’s looks, we should ask ourselves: Is it appropriate to tell this person and/or everyone else that I want to sleep with them?   

It’s an excellent point, though crucial to add that seeing beauty in someone is not always rooted in lust.  Love for friends and family usually renders them absolutely adorable or heroically handsome.  Whenever I overhear someone say, “You’re beautiful!” it will always register as an expression either of desire or affection.  (Neither of which, Mr. President, are ever appropriate in a professional context.)  

Yet plenty of us still envy Kamala Harris a little.  And too many of us seem to think being conventionally attractive is truly important because it corresponds directly to being successful in love.  This is perhaps the most dangerous myth of all. 

If I hear the phrase, “She was out of my league!” one more time, I’m going to swat the sad sack who says it.  My dating history is nothing to brag about, but I can brag—shamelessly—about being a trusted confidante to dozens upon dozens of different people with all sorts of dating histories.  And after a few decades of listening to them spill their hearts out, I’ll let you in on a little secret: When it comes to love and lust, everyone is wracked with self-doubt. 

And I mean everyone.  The athletes, the models, the geeks, the fashionistas, the bookworms, the jet-setters, the intellectuals, the rebels, the leaders, the housewives, the musicians, the Zen Buddhists, the life of the party.  That girl who can’t walk through a club or the office without being propositioned.  That guy known as a heartbreaker because he can bed anyone he wants to and does so.  That stoic who doesn’t seem to care about anything.  That wallflower so set on navel-gazing that she thinks she’s the only one who’s lonely.  Every single one of them has fretted to me at 2 am, sometimes sobbing, sometimes whispering, sometimes hollering, always shaking: “Why doesn’t he/she love me?!” 

This isn’t to say that it all evens out completely and no one handles it better than anyone else.  Outside of abusive relationships, those who obsessively compare dating scorecards and create rules and leagues for turning sex into a competition are invariably the most miserable.  Some people date a lot because they’re popular, others because they have low standards.  Some marry early because they’re easy to know and like, others because they’re terrified of being alone.  Just being able to easily land a date or get laid has never made anyone I know eternally happy.  Narcissism and self-pity come from thinking it can. 

We’d all like to be the fairest of them all, but what we want more than anything is to be devastatingly attractive to whomever it is we’ve fallen in love with.  And because only those who genuinely know us can genuinely love us, any beauty they see in us comprises our style, our charisma, our perfections and imperfections.  It is the driving force behind all the world’s great works of art we wish we were the subject of.  And unlike beauty pageants or Google’s image search, true art is constantly redefining and questioning and promoting beauty all at once.   

I will always tell certain people how gorgeous they are because I can’t help but think that about those I’m awe of.  (And I guarantee that my friends are prettier than yours.)  But for those of you out there who might feel tempted to rebut the compliment with that age-old line, “You’re just saying that because you’re my [friend/partner/family]!” consider that a compliment motivated by true love is hardly a bad thing. 

And that being desired by someone who doesn’t love you at all can get really creepy.  Really fast. 

 

 

Originally posted September 15, 2013

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What Do You Think of When You See the Word “Healthy”?

6 Sep

Up close Star makeup mac, urban decay(Image by Courtney Rhodes used under CC 2.0 via)
 
In late 2013, journalist Katie Waldman examined the juicing trend, which was cropping up in the corners of Western society where there is a heavy focus on modern notions of “natural and organic” (think anywhere from Berlin’s Prenzlauer Berg to Burlington, Vermont and Berkeley, California) as well as in those where people competitively strive to follow the latest fashions in health and beauty (think the high-earning sectors of London, Manhattan or Los Angeles). Lifestyle writers have declared two years later that juicing has staying power, despite Waldman’s disturbing findings. Along with little to no evidence that cleansing the body with juice can be physically beneficial, she revealed that the language of most detox diets echoes the language used by those struggling with disordered eating – i.e., the idea that most of what the masses eat is on par with poison and you’re a bad person if you don’t purge it. She writes:

After days of googling, I still have no idea WTF a toxin is… Cleansing acolytes use the word toxin loosely, as a metaphor for our lapsed lifestyles…. The problem with this way of thinking is that food and weight are not matters of morality. Thin is not “good,” carbs are not “bad,” and in a world of actual pressing political and social ills, your dinner plate should not be the ground zero of your ethical renewal.

I’m neither a supporter nor an opponent of juicing in particular. Anyone should drink whatever they want to drink. But Waldman made a fantastic point about the way the upper and middle classes in the West so often believe one’s health to be a sign of one’s morality.

This idea is hardly new. The eugenics craze of the 19th and 20th centuries—that culminated with the Nazis exterminating “degenerates”—involved Fitter Families contests held at county fairs wherein judges handed out trophies to those deemed to have the best heritage, skin color, and tooth measurements. Professor Alan Levinovitz argues in Religion Dispatches that these attitudes have survived on into the present, altered only ever so slightly: “The sad thing is, it’s really easy to judge people on the basis of what they look like. We have this problem with race. In the same way, it’s really easy to look at someone who’s obese and say, ‘Oh look at that person, they’re not living as good a life as I am. They’re not as good on the inside because I can tell their outside isn’t good either.’ ”

Do we as a culture believe that being “healthy” is about appearance? Dieting often dictates that it’s about behaviors measurable through appearance. Psychologists agree to the extent that their notions of “healthy” are about behavior, but they also frequently intersect with notions of being “good.” But is being “healthy” about being brave, honest, generous and humble? Physicians would generally argue it’s about staving off death. Right-to-die advocates would argue it’s about quality of life over longevity. Is being healthy a matter of what scientists decide? Ed Cara found earlier this year that weight loss does not lead to happiness. Is happiness a measure of being healthy? Or are you only healthy if you suffer for it? Concepts of “healthy” vary vastly from person to person, and across cultures. Is that healthy?

In The Princess Bride—probably the Internet’s second-most quoted source after Wikipedia—the hero cautions, “Life is pain. Anyone who says differently is selling something.”

Yet the villain says, “Get some rest. If you haven’t got your health, you haven’t got anything.”

Whether you agree with any or none of the above, leave me your thoughts on the meaning of “healthy” either in the comments or via an e-mail to paintingonscars[at]gmail.com

 

 

Difference Diaries Wants to Hear from You

19 Jul

Copyright Difference Diaries

 

I have recently become the Director of Educational and Multimedia Outreach at the Difference Diaries, and today marks the launch of the Difference Diaries Blog. We want submissions and we want them now.

The Need. This week Freeburg High School in Illinois jubilantly voted down a petition by Little People of America to retire their school mascot, the Freeburg Midgets.

Such incidents are hardly isolated. Dwarfs rarely make the news, and when we do, we often wish we didn’t. Two summers ago Slate magazine, one of my favorite socio-political periodicals geared at young adults, kicked off a blog about Florida with an opening article called, “True Facts About the Weirdest, Wildest, Most Fascinating State.” Among the facts that apparently render the Sunshine State weird are the python-fighting alligators and “a town founded by a troupe of Russian circus midgets whose bus broke down.” On the day of its release, Slate ran the article as its headline and emblazoned “A Town Founded By Russian Circus Midgets” across its front page as a teaser.

Face-palm.

Here’s the thing about dealing with all this. You get used to it, but not forever and always. Sometimes it rolls off your back, sometimes it hits a nerve. This time, seeing a magazine as progressive as Slate brandish RUSSIAN CIRCUS MIDGETS on its front page while leaving disability rights out of its social justice discussion brought me right back to college, where friends of friends called me “Dwarf Emily” behind my back and someone else defended them to my face. Where classmates cackled about the film Even Dwarfs Started Off Small—“because it’s just so awesome to see the midgets going all ape-shit!”—but declined my offer to screen the documentary Dwarfs: Not A Fairy Tale. Where a professor was utterly outraged that her students didn’t seem to care about immigration rights or trans rights, but she never once mentioned disability rights. Where an acquaintance asked to borrow my copy of The Curious Lives of Human Cadavers, but awkwardly turned down my offer to lend her Surgically Shaping Children. Where roommates argued vociferously that they would rather be euthanized than lose the ability to walk. Where jokes about dwarf-tossing were printed in the student newspaper.

I won’t go into certain crude comments that involved me personally, but I will say that when a friend recently, carefully tried to tell me about how shocked he was to find a certain video of dwarfs in a grocery store, I cut him off and said, “Lemme guess, it was a dwarf woman porn video? That’s one of the top search terms that bring people to my blog.”

This is not to ignore all those I’ve met who, despite their lack of experience with disability, ask carefully constructed questions and consistently make me feel not like a curious object but like a friend who is free to speak her mind about any part of her life experience. And some young adults are doing awesome work for disability rights and awareness. But when a journalist and mother of a disabled twentysomething recently said to me, “No one wants to talk about disability rights – it’s not seen as sexy enough,” I knew exactly what she was talking about.

Maybe this is just a matter of my growing up, leaving the cocoon of childhood and finding out how uncaring the world can sometimes be. But ableism among young adults in the form of silence and/or sick fascination is a lot more prevalent than many would like to admit. And why does it have to be? Are physical differences truly not sexy enough? Is it because we associate disabilities, diseases and related issues—like caregiving—with older people and with dependence? Dependence is usually the last thing to be considered cool. But does it have to be?

The Means. As a non-profit organization, Difference Diaries aims to ignite ongoing conversation that will contribute to better lives for those living with defining difference as well as friends, families, and perfect strangers who “just never thought about it.” The young adults who share their stories offer real insights and an opportunity for viewers and readers to know a little more about “what it’s like.”

We focus on conditions as diverse as the individuals living with them including: cancer, hemophilia, dwarfism, sickle-cell anemia, albinism, facial deformity, blindness, HIV, amputee, hemangioma, vitiligo, diabetes, renal disease, Crohn’s disease, cystic fibrosis, cerebral palsy, OCD and more.

This is why we want to hear from you. We are seeking blog submissions about living with Difference as a young adult. Prospective bloggers should consider: What does Difference mean to you? What is your personal experience of being Different? What has to be explained most often at work, school, out in public? What would be the most helpful thing for people to know about your Difference? How would you like to see society improve in how it handles Difference?

Send us your submissions via e-mail to info[at]differencediaries.org

 

 

Mother Petitions to End Germany’s Nationwide Youth Games

5 Jul

BXP135660(Image by Tableatny used under CC license via)
The Nationwide Youth Games (Bundesjugendspiele) are a 95-year-old annual tradition here in Germany wherein students ages 6 to 16 spend a day competing against each other in track and field, swimming, and gymnastics. The total scores are read off in a ceremony before the entire school, and those who accumulate a certain number of points are awarded either a “certificate of victory” or a “certificate of honor.” Since 1991, “certificates of participation” have been handed out to the rest of the students.

After her son came home sobbing at having received a mere certificate of participation two weeks ago, journalist Christine Finke started an online petition to put an end to the Games. She explains on her blog:

I’m doing this for all the children who feel sick to their stomach the night before the Nationwide Youth Games, for those who wish they could disappear into the ground during the Games, and for those who want to burst into tears during the awards ceremony… Sports should be fun and make you feel good about your body. But the Nationwide Youth Games are founded on grading: on the upgrading and degrading of some at the expense of others.

She dismisses the Games as a relic of the Nazi era, and while the original Reich Games preceded Hitler, founder Carl Diem did go on to be active member of the regime who instrumentalized the Games as propaganda for the Nazi obsession with bodily perfection. Finke points to the Nazi-like language of her critics on Twitter: “Our children shouldn’t be allowed to turn into sissies.”  Indeed, mottos such as Only the strong survive commonly found in sports culture in the U.S. and other countries are not taken lightly here in Germany, where sick and disabled citizens were murdered in mass numbers less than a century ago. 

As a semi-disabled kid, I had plenty of physical limitations, but, like most kids, I enjoyed the sports that I could play fairly well (baseball, tennis, jump rope) and I quickly got bored with those that put me at the bottom of the class (basketball, football, soccer).  Due to the vulnerability of the narrow achondroplastic spinal column, I wasn’t ever allowed to participate in gymnastics, and contact sports were forbidden after the age of 10 when my peers began to tower over me.  I countered the feelings of exclusion with feelings of pride for holding the pool record for staying underwater (1 minute 15 seconds), and for surpassing everyone in the joint flexibility tests. But what about the kids whose bodies ensure that they will never surpass anyone else in any competition? The best advice I ever got came from my primary school physical education teacher: “If you had fun, you won.” 

But then came adolescence, and with the onset of puberty, the body suddenly is no longer merely something that gets you from place to place. It becomes an object you are expected to sell to others in the brutal competition of dating and mating. It’s no wonder that an almost debilitating self-consciousness encompasses so many, whether in the form of sitting out of sports, refusing to ever dance or, in extreme cases, developing disordered eating habits.

I asked adult German friends how they felt about the Games. “It is the most humiliating memory I have from school!” one responded.

“It’s more likely to teach people to stay far, far away from sports for the rest of their lives, rather than inspire them to be more physically active,” argued one mother.

“Ach, it wasn’t humiliating,” insisted one man. “It was boring. It was all about skipping out to go smoke cigarettes while the super-athletes had their fun.”

“Exactly!” chimed another. “No one cared about it except the ones who won everything.”

I spent my high school years as the scorekeeper for the girls’ volleyball team at the urging of one of the two coaches, whom I both admired greatly. Throughout three years of volleyball games, I witnessed edifying examples of cooperation and self-confidence, and I witnessed a lot of childishness and borderline cruelty from overemotional adults as well as teens.

From that time on, I’ve generally viewed competitive sports the same way most people view rodeos or yodeling clubs – i.e., good for you if you derive joy from that sort of thing, but the competitions and the medals say nothing to me about whether or not you’re a lovely person. 

Of course athletic achievement can signify important life skills like self-discipline and team work, as a recent Michigan State University study has found. But sports are not necessary for developing those skills. Self-discipline can also be demonstrated by reading two books a week or vowing to learn a foreign language and actually doing it.  Tolerance, self-confidence and decisiveness has been shown to increase among students who study abroad.  Team work can be learned from playing in a band.  Or, as LeVar Burton taught us on Reading Rainbow, an aerobics-inspired dance troupe. 

In arguing to keep the Games, physical education teacher Günter Stibbe says, “Sports are brutal, of course.  But students have to learn how to deal with humiliation.”

Indeed, narcissism is characterized not just by excessive bragging but also by reacting badly to criticism or failure.  Performing poorly in sports—or in any field—can be an opportunity to learn to accept all the moments in life when you won’t be seen as special. But the idea that the body is only worth what it can do is deleterious. And too many educators fail to teach students the dangers of being too competitive and fearing weakness

The heavier burden may in fact fall on those who come out on top in high school and risk later panicking when they learn that the big wide world doesn’t really care about how many points they accrued in the discus throw back when they were 16.  Both the losers and the winners would benefit from learning that athletic competitions in youth are no more important than rodeos or yodeling competitions at any time in your life.  After all, points and medals are no indication of whether or not you’ll know how to pursue healthy relationships, be a responsible member of your family and community, or find a fulfilling career. Those who heavily brag on into adulthood about how hard they just worked out down at the gym—or how many books they read, or how much they earn—usually appear to be compensating.

This is perhaps why Stibbe criticizes the tradition of reading of the scores in front of the whole school as “pedagogically irresponsible.”

But in Der Spiegel’s online survey, there is no option for arguing for the Games on the grounds of sportsmanship and accepting one’s limitations. The two arguments to click on to support the tradition are “For God’s sake! It was the only thing I was ever good at in school!” and “What else would we do with our crumbling race tracks?” The majority of the 57,000+ respondents chose the latter.

 

 

Interview on Berlin Television

6 Jun

©Ines Barwig(Image ©Ines Barwig)

 

Berlin’s public broadcasting station rbb has just aired a report on Painting On Scars, which you can read about and watch here.

For those of you not fluent in German, I advise you against using GoogleTranslate. As a professional translator, I’ve always considered the service a bit of a rival, but now we’re talking full-blown war. Because while any half-educated human Germanist could tell you that the rbb report translates into English as “Short-Statured – Getting Taller Through Operations,” Google says:

 

GoogleTranslate

 
 

The Rules For A Photo Shoot

10 May

Photo Shoot ©Ines Barwig(Image ©Ines Barwig)

 

“Sometimes you get a flash of what you look like to other people.”

― Zadie Smith, On Beauty

 

One of my responsibilities at my day job is to coordinate photo shoots for employee portraits. I’ve done this three times now, and it always requires warmly coaxing reluctant coworkers into saying yes, and chatting with them while the flashbulbs fire off in their face. Because, as the photographer told me the first time, “I need someone there to hold their hand. To keep them calm and smiling. Otherwise, a bunch of them will get all self-conscious and fussy. Sometimes it really feels like taking kids to the dentist.”

Indeed, even getting them to show up can be a challenge. A fair number of people flat-out refuse; most but not all of them women, who cut me off mid-sentence and insist, “No photos! I hate being photographed.”

Last week, just after I’d heard this for the umpteenth time, my cell phone rang. It was a reporter who is doing a television piece about Painting On Scars.

“Emily, my team and I just came up with a new idea for our story. We’d like to film you having your picture taken in a photo shoot to show how self-confident you are in front of a camera!”

I couldn’t hold back my laughter.

And then I thought, what is self-confidence in front of a camera?

My experience watching others has shown me that there are unspoken, commonly held beliefs that dictate so much behavior during photo shoots.

For one thing, we tend to believe that selfies are empowering, but that it’s embarrassing to be photographed by someone else. Which goes to show that it’s not about being photographed but relinquishing control over the photograph. Most of us have an idealized view of ourselves that includes seeing our own faces at a particular angle, but we hate it if someone captures us from an angle that deviates too much from our ideal. (This has been proven by clinical trials.)

We tend to prefer smiling photos of others but closed-mouth photos of ourselves. Showing teeth often strikes us as warm and welcoming on someone else, but the fear of looking too uninhibited results in many of us appearing overly serious in our portraits.

We tend to loudly list every physical feature we don’t like about ourselves, believing it signifies modesty. Even though it often comes off as fishing for compliments.

So we tend to reject direct compliments, again believing it to be a sign of modesty. Even though John Cleese famously told Stephen Fry:

“You genuinely think you’re being polite and modest, don’t you?”

“Well, you know …”

“Don’t you see that when someone hears their compliments contradicted they naturally assume that you must think them a fool? Suppose you went up to a pianist after a recital and told him how much you had enjoyed his performance and he replied, ‘Rubbish, I was awful!’ You would go away thinking you were a poor judge of musicianship and that he thought you an idiot.”

“Yes, but I can’t agree with someone if they praise me, that would sound so cocky. And anyway, suppose I do think I was awful?” (Which most of the time performers do think of themselves, of course.)

“It’s so simple. You just say thank you. You just thank them. How hard is that?”

You must think me the completest kind of arse to have needed to be told how to take a compliment, but it was an important lesson that I (clearly) never forgot. So bound up with not wanting to look smug and pleased with ourselves are we that we forget how mortifying it is to have compliments thrown back in one’s face.

Indeed, the photographers I’ve worked with remember subjects in terms of their agreeableness versus their fussiness. I bore this in mind as I prepared for my own photo shoot.

How much preparation was required? Recovering from surgery and combating unanticipated complications, I wasn’t feeling that I looked my best. I won’t reveal what about my looks were particularly displeasing to me because there is no right way to hate your body. Many in the Body Image movement have argued that it’s fair, not rude, to voice our insecurities. In fact, isn’t it good to let others know that they are not alone in their struggle for self-acceptance? But these insecurities do not exist in a vacuum. They exist in a hierarchy, and this hierarchy dictates that if I’m ashamed of gray hair, someone with more gray hair should be more ashamed. If I’m upset about having noticeable scars, someone with more noticeable scars should be more upset. And so on. Body-bashing upholds the hierarchy

And ignoring the effects one’s own body-bashing has on others is, no matter how you look at it, self-involved.

So instead of spending time and energy on whatever might disrupt my ideal self-image, I thought about what makes a photo shoot enjoyable.

A kind, charismatic photographer.

People who make you laugh.

Someone who truly loves you saying something particularly nice about their favorite photo.

Hearing from the photographer, “Thanks for being so easy-going! That was really fun.”

For two years, a friend would never let me or anyone take his picture. It was on very rare occasions—group photos, flirty hugs with a close friend—that he wouldn’t turn away or cover his face. Whatever hang-ups he had about physical imperfection, he carried himself in a manner that attracted both sexes from miles around. He visited me in college once and we noticed four of my fellow students check him out during his first hour on campus.

On another visit, I snapped his picture and declared, “Hey, you didn’t cover your face this time!”

“Yeah, I’ve stopped doing that.”

“Why?”

“ ’Cuz I found it’s really annoying when other people do that when I want to take their picture.”

I smiled. “Ya think?

 

 

Will We Live To See The End of Dwarfism?

29 Mar

Hands

 

Prologue: My three-month long hiatus from blogging was due to tendon surgery I underwent in January and rare complications that arose from it. I am now gradually returning to work from sick leave and thrilled to be back.

* * *

Medicine has been transforming the fate of human society since the first moment someone bandaged a wound. Bearing this in mind, along with the more recent advances in genetics, I have realized for the past decade or so that there is a future, however near or distant, that promises a world without dwarfism. But what if this world arrives as soon as the next generation?

Pharmaceuticals company BioMarin reported earlier this year the start of clinical trials for a drug called BMN-111. If it ends up doing what it promises, repeated injections could transform the bone and cartilage growth of children born with achondroplasia, essentially curing them of the condition. Could this mean that I might someday belong to the last of the dwarfs?

To be clear, BMN-111 could cure only achondroplasia, the most common type of dwarfism, not the other 200+ types. (So the attention-grabbing name of this article is a tad misleading.) Dwarfism caused by growth hormone deficiency—which affected circus performer General Tom Thumb and most of the actors playing the Munchkins in The Wizard of Oz—has already been cured by hormone injections invented at the end of the last century. But 70% of all dwarfs have achondroplasia. Without us, the small number of people identifiable as dwarfs would become much smaller.

Because I’m a fully grown adult, I can’t ever cure my achondroplasia. But would I have chosen to do so if I could? Were my doctor to offer me a pill that would transform my joints and my muscle tone, allowing me to walk and stand around for longer than an hour without my feet swelling with pain, I would take it in an instant. The same goes for a pill that would endow me with more normal fine motor strength, so that I could open jars and push down sticky buttons and do all those tasks that leave me swearing and/or asking someone else for help. I would gladly have taken a pill that would broaden my Eustachian tubes so that I would stop getting ear infections every year. And I would have embraced any sort of medicine that would have widened my spinal column so that I would never have had to have a laminectomy, and so that I could cook and clean my house without back pain. All of the discomfort and inconvenience I just listed are part and parcel of achondroplasia – parts that limb-lengthening could never alter.  

But when I consider a pill that, in ridding me of all that pain, would also rid me of every physical marker of achondroplasia, I suddenly hesitate. My wrists, my feet, my skull, my face would look significantly different from the one I have. The idea of never having had to learn how best to react to being the most physically remarkable person in school, of never having undergone limb-lengthening, of never having lived in an institution with children with all sorts of serious conditions, of never having had to explain my unique history to others – it makes me have a hard time imagining an Emily Sullivan Sanford that is anything like the one I know today. My dwarfism is only part of who I am, but it has been a significant part of who I am. This is why I understand the Little People of America members who balk at BMN-111, put their fingers in their ears and chant, “Go away, go away, go away!”

We must approach the future rationally because our emotional attachment to life as we know it can lead us to delude ourselves with an unrealistic sense of control. History after all demonstrates that future generations will never know all kinds of things we treasure today. Give or take a few centuries, people in our part of the world will most certainly not face the same illnesses, speak the same language, wear the same clothes, eat the same foods, or observe the same traditions we do. Whether we’re debating the politics of Hawaiian Pidgin or that punk’s not dead, we do not get the final say on what future generations will know and what will be lost to the ages.

Identity is a construct, but a construct that is as powerful as any other. As Andrew Solomon writes, “I don’t wish for anyone in particular to be gay, but the idea of no one’s being gay makes me miss myself already.”

Granted achondroplasia is not merely a difference like a dialect or homosexuality. It is a medical condition that causes very real physical pain and health risks. Like diabetes. I can write with certainty that the vast majority of people with diabetes, while rightfully proud of the obstacles they’ve overcome, would happily rid themselves of the disease. They would celebrate never having to check their blood sugar, inject themselves with insulin, or worry about developing dangerous complications. We can safely make the same assumption for people who have to deal with migraine headaches or deep-vein thrombosis.

But let’s consider a condition that, like achondroplasia, has as many social ramifications as medical ones. I bet most people who wear glasses would gladly take a pill that guaranteed perfect vision. No more headaches, no more pressure sores on the bridge of your nose, no more wondering where you set them down, no more worrying if they break, no more bills! But would they so easily let go of their bespectacled appearance? Although he no longer needs glasses since his laser surgery, comedian Drew Carey wears non-prescription glasses to maintain his look.

I surveyed a handful of friends in Europe and the U.S., and most answered that they would indeed take a pill guaranteed to improve their vision, and also that they would never wear anything but sunglasses again. If this scenario ever becomes reality, the movement of the past 100 years to broaden beauty standards to include the bespectacled will begin to fade. The 20% of my respondents that answered, “I would wear non-prescription glasses because it’s a part of my identity,” will belong to a shrinking minority left to fend for itself. They will likely start counting the minutes until they hear something marginalizing like: “Isn’t it great you won’t have to look like a nerd anymore?”    

Once again, people with achondroplasia must admit that our distinguishing condition involves far more innate physical complications than simply needing glasses or being gay. Activist Harry Wieder bemoaned the reticence among people with dwarfism to even admit that we are disabled, and he was right to be so critical. Downplaying the pain and surgical risks everyone with achondroplasia faces is a matter of denial. But such denial is often rooted in the worry that others will overemphasize our pain, distancing themselves from us in a way all too similar to the fear and pity that fuels ableism. Such distance imposed by other minorities can break solidarity and lead to hierarchical thinking along the lines of, “At least I’m not like that!

Anyone who reacts to the idea of BMN-111 ridding humanity of the achondroplastic appearance with a sigh of relief has a problem. It’s a problem we can never afford to ignore. The lessons of diversity awareness and inclusion are priceless. If dermatologists some day offer a cure for vitiligo, Winnie Harlow’s recent successes in the world of modeling will still have only been a good thing.

My attachment to my starfish hands, my achondroplastic nose, and my scars is not rational. But the human experience is never purely rational. And self-acceptance is an achievement like no other. Almost every person with achondroplasia has a jarring moment when they see themselves in photos or on film and are reminded that their hands are not at all slender, like most of the hands they see in photos or on film. Or that their hips sway when they walk. Or that their skulls are larger. Learning to live with the shock is a difficult but worthwhile experience. When a mother of a girl with achondroplasia wrote to me, asking about her four-year-old daughter’s future, my family awwwwwed at the photos she sent us. “I remember having an adorable little girl with a forehead like that!” my dad grinned.

I was not nearly so moved by the recently published images of celebrities photoshopped to “reimagine them with dwarfism” next to an image of Peter Dinklage photoshopped to “reimagine him without” because only their legs were modified.

The project itself is thought-provoking, but Daniel Radcliffe simply wouldn’t get into the achondroplasia club with those ridiculously long arms. And Peter Dinklage—whom GQ declared a “stud” in its 2011 Men of the Year list—would have a dramatically different forehead, cheekbones, jaw, and nose.

One of the respondents to my survey who said he would keep his glasses explained, “Not really for aesthetic reasons, exactly, though that’s part of it (and it is fun to buy glasses). But because they’re a part of my face! I’ve never considered contacts, either, come to think of it. They serve some other function, beyond utility and style, I guess.”

Similar feelings have been expressed by people who underwent surgery to remove the sixth finger on their right hand for convenience, while opting against the removal of the sixth finger on their left: “Why would I cut it off? It’s a part of me.”

Syndactyly runs in two sides of my family. One relative remarked about her child, “I was so happy when she was born to see she didn’t have those fused toes!”

To which another relative with fused toes later said, “Why? It hurts a bit more when you stub them, but otherwise, what’s the big deal?”

Replace the word “fused toes” with red hair or monolids or pale skin or dark skin or freckles or whatever intrinsic part of you might somewhere be considered unfashionable and you’ll know a little how dwarfs feel about BMN-111. As with limb-lengthening, BMN-111 threatens to out the uglier feelings some people have about our appearance. We must remember that it’s the feelings that are ugly, not the body.    

Talking out my endlessly complex thoughts about a world without dwarfism feels like moving through a labyrinth that is partly my own making. During one such recent talk, a close friend said to me, “If we could look at a version of you that never had achondroplasia, I understand that you would miss yourself and I would miss you, too.  But you would be awesome in a different way that would still be your own way, and it would be without all the pain and complications and danger.”

This is what people with achondroplasia need to hear from those who truly accept them.  

 

 

 

Everyone’s Sexuality. Everyone’s.

7 Sep

mjaxmi1inge5ntm3ymu4ngnkytg5

 

Don’t read the comments. Don’t read the comments. Don’t read the comments. 

That’s what raced through my mind as I read “The Challenges of Having Sex As A Little Person” at The Atlantic. Of course I read the comments anyway. 

And I was only slightly startled to find nothing but solipsistic snickering and overdone puns. The Atlantic doesn’t win any points for ending the article on a pun, either. But praise is due for addressing the topic at all. Based on an extensive interview with Dr. Marylou Naccarato, who has Kniest dysplasia, the article takes a wonderfully sex-positive approach to the experiences of people with dwarfism and the physical obstacles they can face in bed.

As per nearly every feature on dwarfism in the mainstream media, there are some factual errors. For example, one dwarf couple is quoted claiming that people with achondroplasia require “no medication, surgeries, special needs, nothing.” (See here for a list of the many complications we are at risk for.) But Naccarato is doing great work that is revolutionary in light of the fact that Little People of America, and probably most disability advocate organizations, repeatedly shy away from the topic of sexuality.

A simple reason for their silence is that almost all disability organizations comprise just as many parents and relatives of disabled people as disabled people themselves. And who wants to debate the best way to masturbate with Mom or Dad sitting next you? A more sinister reason for the silence is one of the building blocks of modern prejudice against disabled people: that is, the presumption that they are innocent, and therefore asexual. Most positive portrayals of disabled people are cute and cuddly. Is it the only way society can accept us? Refusing to see a minority as anything but asexual is to deny them their full humanity, on par with slut-shaming, prude-shaming, queer bullying, and objectification.

Before I go any further, let me say this: I do not want to talk publicly about what I do in the bedroom and I do not want to know what you do in the bedroom. My firm belief in sex-positive feminism and equality does not mean I think that you are sexy or exciting or impressive. Unless we’re close confidantes or I’ve indicated otherwise, please assume I don’t want any mental images of you and your naughty bits, no matter what they look like.

That said, I fully support anyone’s right to desire any sort of consensual sex imaginable. Without double-standards. Without the pressure of competition. Without the nuisance of others turning their personal preferences into rigid rules.

Take, for example, the way virginity is so frequently turned into not just a game but a high-stakes tournament. When and how did you lose it is an idea all of us are expected to base much of our identity on, even as adults. This is despite the fact that, according to medicine, virginity doesn’t exist. After all, what kind of sex does a guy have to engage in to officially “lose” it? And what about girls born without hymens? When exactly do lesbians lose their virginity?

Like race, virginity is a social construct and, in the words of a very wise person on Tumblr, what can be socially constructed can be socially changed. Last year the great Tracy Clark-Flory interviewed acquaintances about the sexual experience they considered to be their “first time.” The glorious thing about her inclusive project was that it revealed human sexuality to be just as diverse as everything else about us. Some defined their first time by their first orgasm, others by a particular first touch or experience of being touched. The problem with her stretching the definition of “losing your virginity” so broadly is that it robs competitive, insecure people of their ability to set standards with which they can gloat and put others down. Wait, no. That’s another glorious thing about it. There really is no problem with recognizing everyone’s experience as equally valid.

Failing to include everyone not only causes unnecessary humiliation, but it causes us to miss out on opportunities for true enlightenment. To quote the authors of You Can Tell Just By Looking: “Sexual minorities—people whose sexual desires, identities, and practices differ from the norm—do a better job talking about sex, precisely because they are constantly asked to explain and justify their love and their lust to a wider culture and, even, to themselves.”  The more you examine harmful traditions, the less necessary they become.

This does not mean that minorities have better sex. Indeed, too many activists in the sexual revolution end up repulsing readers and listeners when they allow pride in their sexuality to devolve into arrogance, insisting their sex life is better than yours, rather than merely different. For a year, the BDSM club at my alma mater ran the slogan: “I do what you’re scared to fantasize about.” Not helpful. And kinda pathetic the more you think about it.

I will never judge someone for liking any particular kind of consensual sex, but I will judge anyone who tries to turn sex into a competition to calm their own self-doubts. Whether you’re a wise-cracking online commenter or a sex-positive pioneer, true sexual liberation is about moving beyond the middle school clique mentality, not indulging in it. It’s pretty much the least attractive thing there is.

Will Dove’s New “Selfie” Film Redefine Beauty?

26 Jan

 

In another installment of its positive body image campaign, Dove has released an 8-minute documentary called Selfie that premiered last week as the Sundance Film Festival.  For those of you who can’t watch it, the film can be summed up thusly:

***

Mothers with their teenage daughters talk about their insecurities about their own bodies.  One girl reveals that her mother’s urging her to wear cosmetics makes her uneasy. 

Cut to a high school gym, where a professional photographer addresses female students, telling them, “I’m here to talk to you about beauty.  You have the power to change and redefine what beauty is!  … The power is at our fingertips.  We can take selfies.”

Cut to her workshop about self-portraiture. “I’m going to ask you to take a risk that could change the way that people define beauty.  What if we find a way when you guys are taking your selfies to actually incorporate the things about us that we don’t like?” The girls list what they hate about themselves: braces, glasses, round faces, rosy cheeks. 

The photographer points out that mothers often pass on their own insecurities to their daughters, to which one girl vociferously agrees.  The girls then are given an assignment to teach their mothers how to take selfies, because “Your mom can redefine beauty just like you can.”

A touching montage of mothers and daughters learning to embrace their least favorite features plays, culminating in an exhibit of the selfies, where visitors leave Post-Its complimenting the girls on their looks.  The girls then smile at how good the compliments made them feel.  The mothers declare that social media is redefining beauty by putting the creativity in the girls’ hands.    

***

I absolutely love the way the film takes mothers to task, especially in light of this week’s report that parents are googling “Is my daughter ugly?” three times more often than they are posing the question about their sons.  We cannot teach our young women that they should not obsess over their looks if we don’t believe it ourselves.

I also like Dove’s idea of promoting the anti-duckface selfie, the least-favorite-traits selfie.  This film will do some good.  But does it truly redefine beauty for everyone?  Does it include everyone?

What about a girl with muscle spatisticity?  What about a girl with the physical markers of Down Syndrome?  What about a girl with scars, burns or chronic skin discoloration?  And, perhaps most importantly, what about that girl who is silently—obsessively—counting and comparing the compliments on her selfie to the compliments on others’ selfies?  Hierarchies survive through feelings of competitiveness.  What about the girl who ends up with the fewest or the least glowing compliments?  Does the project teach these girls how to deal with that, or does it leave them to their own devices?

This is not criticism for the sake of cynicism, but for the sake of empiricism.  The Love Your Body movement has been around for over 30 years, yet eating disorders are on the rise and our mainstream standards of “beauty” have not deviated from tradition at all.  (Go ahead and google “beauty” right now in an image search and see how diverse the results are.) 

As with so many Love Your Body projects, the girls in the video are not beautiful under the sociological definition of “super-normal” (strange and considered exotic), but they are far from the sociological definition of “abnormal” (strange and considered repulsive).  Everything they hate about their bodies—cheeks, glasses, eyebrows, braces—still falls smack in the middle of healthy human appearance.  It’s the equivalent of adults in the middle-middle class and lower-middle class discussing how “poor” they feel for not having made it into the top 1%.  Such insecurities are valid, but repeatedly restricting the discussion to those who only just barely challenge society’s definitions of “success” or “beauty” is safe to the point of almost seeming scared of rocking the boat too hard.

This is not to say that girls with more abnormal looks deserve more sympathy than those closer to average.  On the contrary, in my experience low self-esteem does not correlate to appearance.  I know many women who, being a few pounds overweight, are far less happy with themselves than other women with severe and rare deformities.  Perhaps parents are more dedicated to boosting self-esteem when their daughters more noticeably deviate from the norm. 

Or perhaps being excluded from the game from the get-go helps a girl to see how dumb the rules are to begin with.  Returning to the analogy of class, researchers have found that wealthier parents often have a harder time handling severely disabled children because they upset their need to be in control (“He breaks things!”), whereas parents living below the poverty line are more accepting of life’s unreliability (“Eh, there’s nothing in this house that wasn’t broken long ago!”)  Similarly, girls and the parents of girls whose looks could possibly near the standard of super-normal beauty may be more likely to spend time, money and anxiety trying to reach it than those who give up trying to wow the crowds and instead laugh at the delusional nature of it all.

Either way, I don’t think the Selfie project would be hurt one bit by a truly diverse sample of beauty.  (Let’s get some felfies in there, while we’re at it.)  Rather than monologuing about our own individual fears and demanding strangers allay them with compliments, we need a dialogue between the girl on the far end of the spectrum who’s been trashed for her looks and whoever it was who gave in to the temptation to trash her.  We need a dialogue between those who want to meet an elite standard of beauty and the type of people who support that standard.  We need a dialogue between the ugliest person you can imagine and your reasons for deciding they’re ugly.

That would redefine a lot.

 

 

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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?

 

 

What To Do When I Go FWOMP!

23 Jun

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

 

“HEEEEEY!” Friends were at the door, back fresh from a vacation that had seemed far too long for me to endure. At the sound of their dulcet voices calling me in unison, I jumped from my chair, rounded the corner, darted down the hallway toward their open arms, and FWOMP! Iwassuddenlyhorizontal.

My friends gasped, “OMIGOD, ARE YOU OKAY?!” Apparently this time I was, from what I could tell of the pain, and I bounced up before they finished asking, throwing my arms around them both at once and laughing, “How’s that for a dramatic hello?”

“You’ve been drinking again, haven’t you?” one of them smiled.

“Yes!” I beamed. “You know exactly what to say! How was your vacation?”

We chatted for about five minutes, made plans for the next day, and said hasty goodbyes because their toddler was itching to get home. As I shut the door, I rubbed my knee, looked at my partner, and shook my head. “I’m gonna have a new bruise on the left to match the right.”

Two weeks before I’d gone flying down the same hallway, but that time it had really knocked the wind out of me and left a cut needing a bandage. I had reacted a little less wryly – diaphragm spasms are never pleasant and they forced me to let out a yell that sent my partner running from the kitchen. But after my initial roar, I switched to hollering, “I’M FINE! I’M FINE! DON’T PANIC! I’M FINE!” Our guests came peeking out of different rooms, everyone asking me how I was.

I was fine, but I was mad. Mad at gravity, mad at the pain, mad at my useless tendons and weak muscles that cause me to stumble on average about every ten days. But I wasn’t that mad. I’ve gotten used to it, after all.

Because my anterior tibilias tendons on both legs were severed some time during my first limb-lengthening procedure, I use different tendons to lift my feet when I walk. They compensate relatively well, but since they cause my feet to point slightly outwards rather than straight ahead, I’m a walking accident waiting to happen. It’s compounded by the fact that my muscles fatigue more quickly than others’ due to my dwarfism. It’s been this way since I was twelve and changes only in that the bigger I get, the harder I fall.

Since I was my surgeon’s only known case of tendons severing during limb-lengthening, most people with dwarfism do not face this problem. Some do, however, when their greater susceptibility to fatigue combines with their having to carry an average-sized trunk around on exceptionally short legs. In other words, had my tendons not severed, I may or may not have had this habit of losing my balance. It’s exasperating and inconvenient, but what can I do about it?

Laugh, for one thing. Over the years, I’ve decided a woman falling down is both hilarious and revolutionary—what with the delicate ballerinas we’re supposed to be—and drinking too much is just one of many lovely excuses to offer for it. Years ago I fell while carrying an armload of water glasses and promptly ended up in the emergency room with stitches and a black eye. From the physician named Dr. Goebbels to the nurses insisting my partner leave the room so that I could be free to explain what had happened, the opportunity for sick jokes was everywhere.

Friends have kept records of my losses in the battle against gravity. Some are critical, sighing, “EMILY, that’s the second time today!” while others are cheerleaders: “It doesn’t count this time because the ground is uneven.” (And can I just point out that the German word for gravity—Schwerkraft—literally translates as “heavy force”? I love German.)

Of course, I’m not always at my best when it happens. Often I fall because I’m particularly tired and this results in my being particularly bad-tempered about it. That I kvetch the most to those I know and love the best is logical, but not entirely fair.

When my peers witness me falling for the first time, many of them don’t know what to do. I’m trying to get better at telling them. If I’m not badly hurt, but still somewhat hurt, I try to shout that I’m okay to curtail their apprehension. Taking a minute to help me up and, depending how close we are, offering me an arm until I’m steady on my feet is almost always appreciated. Breaking into a panic and giving me the sense that it’s my job to calm them down is less helpful.

Most people who have to deal with pain caused by disabilities don’t want any more sympathy or attention beyond what we would give someone with a light headache. (In fact, many of us want a tad less sympathy than what some with mundane headaches go fishing for.) If I’m not hurt, anything you say to keep the mood light as a Screw-you! to my heavy fall will be invaluable. If I am hurt, any offers to help before I have to ask will be worth even more. And if your gentle-yet-practical manner demonstrates particularly good caregiving skills, I’m going to tell you so. Experience has made me a particularly good judge.

And I’m not embarrassed when I fall, so please don’t be embarrassed for me. At best, it’s as disruptive as a mighty sneeze. At worst, it’s a mood-killer.

The one fall that still makes me cringe to this day happened as I was stepping off a stage after delivering a poem to thunderous applause. I spent the summer before my senior year of high school at a young writers’ workshop in the Berkshires, where I found all the beauty, intellect and acceptance I been dreaming of ever since I first put pen to paper. Reciting one of my pieces to giggles and cheers made me feel as great as anyone on any podium has ever felt. The moment had been just perfect. And then, I slipped. The handsome emcee looked sincerely concerned: “Are you okay? Are you okay?” He had to keep asking because I was mumbling my answer, mortified to even acknowledge what had just happened. In my head I was begging everyone in that room, Please remember my poem and not my fall. Please.

Then again, “And Emily came tumbling after” is a poem in itself. It doesn’t work as well in Germany, what with no one having grown up with Mother Goose, so I’ll have to settle for the joke about being drunk. That one’s an international success.

 

 

 

PINK!

19 May

(Image by Monika Tugcu used under CC license via)

 

This holiday weekend I’m sparing you my deep and profound thoughts about the Barbie Dreamhouse exhibit that opened this week in downtown Berlin and the protest that accompanied it.  Instead, I’ll let the issues and problems of beauty standards and femininity and sexuality and body image and fashion and pink and sparkles be summed up by a little story I discovered this year:

In 1999, Jon Stewart was invited to be featured in People magazine’s annual list of 50 Most Beautiful People.  (I’ve written about the List before in The Body Image Series, highlighting Michael Chabon’s excellent reaction to it.)  Stewart agreed to be featured but insisted on wearing a pink prom dress and a tiara for the photo shoot.  Why? 

I feel pretty!

 
 

Who Should Have To Expose Themselves?

5 May

(Via)

 

If you live anywhere in the West, you know this transphobic joke.  Girl and guy go to bed.  Guy wakes up and finds out somehow that his lover was not born a woman.  The moment of realization is sketched out across his face in excruciating slow-motion, and then he runs away in horror/vomits his brains out/gets very, very, very angry.  The message? 

1)      A trans woman isn’t a “real” woman, she’s a freak.

2)      His being attracted to her somehow makes him less of a man.

3)      Most importantly, he’s been duped.

Feeling duped is the bedrock of transphobia.  Those who feel indiscriminately upset at the very idea of transsexual and/or transgender people usually say something along the lines of, “They’re deceiving people!  I’d be pretty pissed if I found out my girlfriend/boyfriend had had a sex change.”  This feeling is usually enshrouded in the myth that transitioning into the opposite sex is done capriciously, just for laughs and the thrill of going undercover.  This mentality never ever acknowledges the fact that many transsexual and transgender people feel as uncomfortable in the body they were born in as cis people would feel in a body they were not born in.  And it fosters the view of cis people as victims of trans villains, ignoring that trans people in the United States have a suicide rate 26 times higher than the nationl average and that worldwide one trans person is murdered every three days.

This all too common belief that trans people are deceptive, and maliciously so, has now reached new heights as two trans men in the U.K. have been charged with and convicted of sexual assault.  Their accusers claimed that the men’s failure to disclose their gender at birth before they slept with them was a form of fraud and thus the consent the women gave to sex was under false pretenses.  I am in no position to make a final judgment about these two specific cases.  Perhaps they involved many other factors revealing coercion and predatory behavior.  I cannot speak for the defendants or the accusers.  But I can and will speak out against the widespread belief that the freaks of the world are obliged to warn everyone they know about their atypical features and histories before they dare try to get close to someone.

My husband thought I must have been in a car accident years ago when we met for the first time at a birthday party.  I was wearing a sleeveless top exposing the lavender scars that traverse my upper arms.  I know I told him soon after, on our first date, about my long medical history, but that was because we were having an intellectual debate about the role of the media and I decided to use my childhood experiences as an example.  I decided to do so because I liked him and trusted him in a very special way.  It was not because I felt that anyone I was interested in romantically “deserved” to know.

What do potential sex partners deserve to know?  Do they deserve to know I had my calf bones removed?  Do they deserve to know I had my tonsils out?  What if I had been born deaf and had a cochlear implant?  What if I used to weigh twice as much, or half as much, as I do now?  What about veterans or cancer patients who have lost body parts normally only seen by sex partners?  Is it fraudulent of a cancer survivor to wear a prosthesis that would suggest she still has both breasts?  

Indeed, the moment I read about the British cases, I was immediately reminded of a poem by Robert Hass about a woman who is abandoned at her doorstep by a young admirer after she tells him she has had a double mastectomy.  “I’m sorry.  I don’t think I could,” he mumbles before he turns his tail and runs.  I do not know what it is like to be a cancer survivor or transsexual, but surely many of us know what it is like to fear being rejected for something we never had much of a choice about.

In reponse to the British accusations of sexual assault, law professor Alex Sharpe has asked, What if a potential sex partner appears white but is in fact of mixed race – is a failure to map out your entire family tree grounds for prosecution?  Of course not.  He points out that individuals are not legally obliged to reveal to sex partners that they are bisexual, married, divorced, have a past criminal record…  The list is endless, and thus he argues: “Given that we all have gender histories but only some of us (transgender people) are required to disclose them, there appears to be a good basis for arguing that a legal requirement to disclose gender history constitutes discrimination contrary to Article 14 of the European Convention on Human Rights.”

Of course, any counselor or psychologist will tell you that trust, openness, and honesty are necessary for a healthy relationship and true intimacy, but the right to privacy and personal dignity are also necessary for any community founded on justice.  And there can be no genuine trust when certain people reveal personal information only because society’s hang-ups about gender, sexuality, or atypical bodies demand they do. 

Everyone is entitled to their sexuality.  No one should ever be pressured into a heterosexual, homosexual or pansexual relationship.  Open and honest dialogue about this is essential.  But the more we blame minorities for upsetting our delusions of normalcy just by being who they are, the more we tell jokes implying that any normal person would be disgusted by their physiology, the more we insist that their identities are a perversion of ours, the more difficult we make it for them to be open and honest with us.

 

 

So Who Should The Cliques Make Fun Of Now?

6 Jan

Christina Red Carpet A new study claiming that Overweight and Class 1 Obese people have a lower mortality rate has been bouncing around the world since Thursday.  National Public Radio’s report seems to be the most comprehensive but hints at the two most extreme, polarized viewpoints:

Cosmetic: This is a victory for the overweight—now we can trash skinny people (again)!

Medical: If people hear about this, everyone will stop exercising and eating their vegetables and then everyone’s going to die!

Both views treat the public like infants who can’t possibly think for themselves.

Doctors are right to worry that a sizeable portion of the population will use this news as an excuse for whatever unhealthy habits they love.  This is why it is important to include the many possible factors skewing the results.  But many people will always cherry-pick whatever statistics suit their lifestyle or claim to be the exception to the rule.  I don’t have any political solutions for engaging with contrarians—whether we’re debating eating habits or global warming—but talking down to them and using scare tactics has a pretty high failure rate.

And from the disability rights perspective, there are exceptions to the rule when it comes to health.  Thousands of them.  As said before, a round belly is not always a sign of fat.  A bony body is not always a sign of an eating disorder.  Many forms of exercise can be more hazardous than beneficial to people with certain conditions.  And many life-threatening conditions are invisible.  Medical tests, not appearance, are always the most reliable indicators of health.  This robs us of the easy answers we crave and which facilitate public debate, but there has never been and never will be a one-size-fits-all health program for the 7 billion humans on the planet.

You and your doctor know better than anyone else if you are healthy or not.  If she says you are overweight but your genes and cholesterol levels put you at no risk for heart disease, she’s probably right.  If she says your weight is ideal but your eating habits put you at risk for malnutrition, she’s probably right.  And if her advice seems sound but her delivery makes you feel too ashamed to discuss it, go find someone with better social skills to treat you.  At the individual level, it’s no one else’s business.  Outside of the doctor’s office, it shouldn’t be any more socially acceptable to discuss someone else’s weight or waist size than it is to discuss their iron levels, sperm count, or cancer genes.

But beauty standards and health trends often go hand-in-hand.  And what really needs to go is the lookist idea that we’re all semi-licensed doctors who can diagnose people just by glancing at them and deciding how they measure up according to the latest medical research.  The reason we have a hard time letting this go is because it’s fun to point out others’ supposed weaknesses.  It’s self-elevating and validating to snicker that ours is the better body type because it calms our insecurities.  Beauty standards are cultural and constantly morphing throughout history, but they have always remained narrow.  (This is especially the case for women, though I sincerely apologize for not providing more research on men.)  Whether fawning over big breasts or flat tummies, public praise for certain body types has almost always been at the expense of others:

 

 
After decades of the Kate Moss heroin chic, Christina Hendricks (see above) of Mad Men has garnered lots of attention for her curves and this week’s study is likely to encourage her fans.  “Christina Hendricks is absolutely fabulous…,” says U.K. Equalities Minister Lynne Featherstone.  “We need more of these role models. There is such a sensation when there is a curvy role model.  It shouldn’t be so unusual.”  She is dead right that it shouldn’t be hard for curvy women to find sexy heroines who look like them in film and on television, just as skinny women or disabled women or women of any body type shouldn’t have to give up on ever seeing celebrities with figures like theirs.  But “Real women have curves!” is just as exclusionary as the catty comments about fat that incite eating disorders.  And when Esquire and the BBC celebrate Hendricks as “The Ideal Woman,” they mistake oppression for empowerment.

We can accept the idea that people of all sorts of different hair colors and lengths can be beautiful.  Will mainstream medicine and cosmetics ever be able to handle the idea that all sorts of different bodies can be healthy?  History says no.  But maybe it’s not naïve to hope. 

And what does Christina Hendricks have to say about all of this?  “I was working my butt off on [Mad Men] and then all anyone was talking about was my body.”

Touché.