Tag Archives: Lookism

Who Needs To Look At Dwarfs In A Theme Park?

5 May

Caged Beauty #1

(Image by Howard Ignatius used under CC 2.0 via)

 

Belgian photographer Sanne De Wilde’s journey into the Kingdom of the Little People in Kunming, China is featured this week at Slate’s photo blog. “For me, it’s about how this kind of place can exist,” she told Slate. “What does it tell you about a person who starts this and creates it? What are his intentions?”

She goes on to explain that one of the hardest things to capture on film was the overwhelming boredom among the performers. “A lot of time the people are just hanging around in their room or on their beds lying around,” she said. 

That circus freaks get bored should not be too surprising, but it is still often radical today to consider that people categorized as freaks can in fact be boring. (More on that next week.)

A theme park funneling in people who pay to look at dwarfs and the state of disability rights in China are worth a zillion words each. But for now, De Wilde’s photos alone have plenty to say on the matter. The feature is definitely worth your time, and to those who do check it out, I leave one question open to you:

Does Slate’s reporting on the exploitation of dwarfs in freak shows now make up for its past SNAFUs?

 

 

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Heritage on St. Patrick’s Day? It’s Complicated

16 Mar

IMG_1606(Image by Folke Lehr)

 

Along with millions of other Americans, I used to boast a bit every March 17th: “You know, I really am Irish.” It’s a common American pastime to cite one’s known heritage, either as demonyms (“I’m English and Irish and… ”) or percentages (“I’m a quarter Irish, one eighth Polish…” ). I still believe in self-determination, but having lived in Europe for nearly a decade, I have ceased to rattle off these titles. Not only is the latter a vain attempt at exactitude with no chance of ever being exact—we’re not even really sure if my great-grandmother was Polish or Belarusian—but it resembles the sort of puzzle-piecing that only pseudo-scientists of suspicious political convictions find relevant. And it makes Europeans laugh. And then correct me. “No, you’re not Irish. Your ancestors were Irish.” Which is true.

While Americans sometimes refer to their ancestors’ nation as their “homeland,” they usually can’t construct a sentence in the country’s official language and certainly cannot name the country’s current head of government, the second largest city, or any of its history that isn’t directly related to U.S. history. At best they know a handful of expressions, a recipe or two, maybe the region where their parents’ parents’ parents lived. For this reason, their claims to nationality usually strike the natives as silly.

But the melting pot concept is often admirably used to celebrate diversity. It bungles any sense of loyalty and prevents jingoism. I can’t really argue that the English are “naturally” evil for what they did to my Irish ancestors when my last name is Sanford. My known ethnic heritage is a split between some of Europe’s most notorious conquerors (English, German) and their victims (Irish, Polish). To claim only one or two of them as “my people” feels ridiculous. If I ever have children, their great-grandfathers will have fought on opposite sides of World War II.

Then again, not everyone’s heritage is such a hodge-podge, and plenty of conservative genealogists try to prove why the blending of certain cultures is “better” than the blending of others. That the perpetrators of segregation, Nazism, apartheid, aristocracy, and the internment camps are the most famous fans of genealogy causes me to cringe whenever anyone claims pride in having Irish or Italian or Icelandic “blood.”

Such pride is much more understandable when coming from minorities who have been made to feel that they don’t belong in the country they were born in. My grandfather, Michael Sullivan, was the grandson of Irish immigrants to America. He was the oldest of 9 children, my mother has 43 cousins, and I’ve never tried to count how many of us there are in my generation. He often began sentences with the word “ ’Twas,” and liked to sing folk songs that seemed to have come from Ireland, but may very well have originated in immigrant settlements in the States. This is the extent of my experience with his Irishness, but his was far more profound. He grew up in a time when he could easily find signs reading, “Irish need not apply,” and “mick” was a word he hated in the way that only people who have been called a slur do. When he married Barbara Tupper and her grandmother found out he was Catholic, she crossed my grandmother out of the family Bible. All this made John F. Kennedy’s election in his lifetime radical. It is my grandfather’s story and it is important. But it’s not my story.

An attempt to make it my story would feel intellectually dishonest and pretty flaky to boot. As Andrew O’Heir writes this week at Salon: “Irishness [in America today] is a nonspecific global brand of pseudo-old pubs, watered-down Guinness, ‘Celtic’ tattoos and vague New Age spirituality, designed to make white people feel faintly cool without doing any of the hard work of actually learning anything.” Indeed, my middle name endows me with no expertise when it comes to picking out Celtic music or Irish books and films. I can’t tell what most Irish people actually enjoy and what’s just on display for tourists any more than I can tell what Finnish people actually enjoy and what’s just on display for tourists.

As said before, taking an interest in other cultures is always preferable to xenophobia. But it often comes with the temptation to flaunt minimal efforts like feats of greatness. Claiming credentials based on ancestry feels not entirely wrong, but not entirely right either.

The boundaries of countries and ethnicities are as blurry as our sense of self. Heritage is often seen as the recipe that resulted in an individual, yet there are so many more ingredients to the recipe. Yes, I wouldn’t be here today if the branches of my family tree were arranged any differently, but I also wouldn’t be here today if my parents had slept together in April 1981 instead of March. And placing too much importance on genetics insults any families who cannot or choose not to have children using only their own reproductive cells. Family is what you make of it.

This is not to say that everyone should always downplay their roots. Children with at least one parent who emigrated from another country often have undeniable ties to their ancestral culture – in any case, ties that are far more likely to be based on fact than fictitious romanticizing. Most of what constitutes our inexplicable sense of culture comes from traditions and foods and pastimes we experienced growing up, and great writers like Amy Tan, Gary Shteyngart, and Sandra Cisneros show that growing up with two cultures affords you special insights into both. If my German partner and I ever have children, we plan to raise them bilingually (English and German) and bi-culturally (Thanksgiving and St. Martin’s Day), teaching them anything there is to teach about where their mother grew up and where their father grew up. Whether or not to add some Swedish into the mix—my mother-in-law came from Stockholm—is a point of endless debate between us.

If we ever have grandchildren, it will be interesting to see how they approach their American heritage. If they’re at all ashamed or excessively proud, I’m determined to discuss it, but if they’re merely disinterested, so what? I predict that my great-grandchildren will not feel any strong connection to their American heritage, nor should they. As my partner points out, maybe they will be half-Czech or married to a Burkinabé and have their hands full raising their own children bilingually. Cultures and people move and morph constantly throughout time and space.

When I finally traveled to Ireland two years ago, there were traces of culture that seemed somehow familiar. And that was moving. But most of the charm—“The Irish Sea really is that green! They really do sing in the pubs!”—came from recognizing things I’d grown up seeing in movies, not in my grandfather’s house. And I also found traces of culture the following year in Amsterdam that were faintly familiar to me because, although I have no known Dutch forebearers, I grew up on Long Island.

My most impressive sense of belonging in Ireland came from the fact that I was not the palest person around. Not by a long shot. (Hence my captioning the above photo taken on the cliffs of Howth in an e-mail sent to friends: “If there’s anything Sullivan about me, it’s my complexion.”) Lookism can be a very powerful force. But it does not have to be. In Dublin, we were never once served by someone who didn’t have a Slavic accent. If the current flood of Eastern European immigrants end up staying in Ireland, their children will have much more of a claim to the place than I do.

They’ll at least be able to remember the name of the prime minister, after all.

 

 

Barbie vs. Lammily

9 Mar

Lammily is Barbie’s new contender(Image by Day Donaldson used under Creative Commons license via)

 

Barbie turns 55 today and her birthday risks being overshadowed by a rival. Designer Nickolay Lamm has kicked off a very successful crowdsourcing campaign to fund the production of Lammily, a doll whose body is modeled after the mean proportions (taken from the Centers for Disease Control) for an American 19 year-old because, as her slogan goes, “average is beautiful.” The center photo above shows Lammily at her earliest design stage in contrast to Barbie. The left and right photos show her updated, final form.

Despite that her name sounds like the way most toddlers mangle mine, Lammily does seem quite lovely. But mostly because the problems with her competitor are countless. Barbie represents—and was very much intended to represent—an idea born in the middle of the last century that little girls should play not just with baby dolls or girl dolls, but with a woman doll, a post-pubescent beauty they should aspire to. The very first Barbie was inspired by the German Lilli, a character featured in tabloid comics who worked as a secretary by day and an escort by night. While it’s disputed whether or not the Lilli doll was in fact a sex toy, the longer you look at Barbie, the more that explanation makes sense.

Barbie is all fantasy: too thin to menstruate, with breasts so big she’d have to crawl on all fours to get around. (Sporty Lammily could knock her to the floor with a light kick.)  Fantasies about beauty are fine as long as they remain a niche, not a standard. If her fame and influence were not so unparalleled, Barbie wouldn’t be a cause of much trouble. But she is the most famous doll in the world, and while she often changes jobs and outfits to bend to society’s trends, her body type never budges from the sex toy standard.

My mother swore I would never own a Barbie—how could it be healthy for a girl with dwarfism to idolize a lady who’s all legs?—but a neighbor bought me one for Christmas, and within the next 10 years I owned 12: Tropical Barbie, Superstar Barbie, Ice Capades Barbie, Gymnast Barbie, Fun-to-Dress Barbie, Loving You Barbie, Hollywood Hair Barbie, Cool Times Barbie, Dreamtime Barbie, Dream Glow Barbie, Dream Date Barbie, and my mother’s own, dragged-out-of-the-attic Barbie from the 1960s, whose earrings had turned her cheeks green. The funny thing is that every one of these Barbies had a slightly different face and slightly different blond hair with varying lengths and textures. But, just like the Disney Princesses, the bodies were all exactly the same. Barbie’s oh-so-80s Rocker friends Diva (brunette), DeeDee (black), and Dana (possibly Asian?) represented a broader range of hair and skin, but their bodies were all replicas of Barbie’s. This is what makes Lammily so radical.

But I don’t want an answer to Barbie. I want many answers to Barbie. Lammily correctly demonstrates that an average girl in the Western world is not blond. But blondes shouldn’t be any more excluded or celebrated than anyone else. Declaring “average” bodies and physical features a beauty standard continues to marginalize girls who deviate from the average. Another word for average is “normal” and it’s never fun for a young girl to hear that her body is “not normal.” Both Barbie and Disney have dared to dabble in the beauty of different ethnicities, but they haven’t been brave enough to try different body types – short, curvy, bony, disabled, with freckles or scars or glasses or birthmarks in the shape of Mexico.

As Hannah Blanke shows in her stellar piece, “Real Women,” there is no wrong way to have a body. If Mattel can invent over 50 varieties of blond hair for their preeminent princess, surely doll manufacturers can find a way to profit from providing a rainbow of body types. Maybe they will be brave enough by the next time International Women’s Day rolls around. That’s my fantasy, anyway.

 

 

It’s Probably Every Dwarf’s Dream to Be a Prop for Miley Cyrus

2 Mar

Freaks(Image by Mariana Rojas used under CC license via)

 

Miley Cyrus loves diversity. Just not, you know, discussing diversity and the complex history behind it. Since her performance at the Video Music Awards last September, she has drawn tremendous criticism for her treatment of the black backup dancers in her shows – cartoonishly imitating their dance moves, spanking them, simulating sex with them. Some, including Cyrus, have argued the portrayal is affectionate or even celebratory, while others perceive it as exploitative and reductive. Articles at Vulture and The Guardian likened it to a minstrel show.

Cyrus also uses dwarf dancers in a similar way. One of these dancers, Hollis Jane, has come forward to voice her regret:

Most of the time, getting a job purely because you’re a little person (in my opinion) is not a good thing. It is further fulfilling society’s idea that we are something to laugh at; that our value is simply to shock. We can all agree that right now all Miley Cyrus wants to do is make society’s jaw drop. So what’s more “weird” or “freaky” than having little people parading around in your show?

As someone who is trying to make it as a serious actress in this industry, not just trying to “be famous” or make money, there is nothing more frustrating than this stigma. The longer little people agree to be used as shock value, the longer it is going to take for us to be taken seriously.

I was a bear in Miley Cyrus’s VMA performance and it was my first time doing anything like that…anything where I was being used because of my height, not because of my talent. And I will be the first one to tell you that standing on that stage, in that costume was one of the most degrading things I felt like I could ever do. I realize not everyone shares my opinion and I might just be young and naive, but I feel like the acceptance of this kind of treatment has got to stop.

In an interview on Ronan Farrow Daily this week, Jane admirably pointed out that the problem lies in the broader culture, not just Miley Cyrus’s individual decisions.  Powerful stars, aspiring dwarf actors, the media, and media consumers all bear a responsibility to quell the demand for dwarfs in freak shows.

To which Cyrus said in her W interview with Farrow:

I don’t give a shit. I’m not Disney, where they have, like, an Asian girl, a black girl, and a white girl, to be politically correct, and, like, everyone has bright-colored T-shirts. You know, it’s like, I’m not making any kind of statement. Anyone that hates on you is always below you, because they’re just jealous of what you have.

To which I say, we really don’t need another Amanda Palmer out there, another millionaire whose ego is so very fragile we can’t ever expect her to buck up the courage to engage with people “below” her, or to admit when she’s been wrong. Every entertainer accused of perpetuating stupid stereotypes has the opportunity to prove whether they are a respectable artist or a pathetic narcissist. An artist is trying to communicate something, and therefore cares first and foremost about what they are communicating. A narcissist defaults to seeing themselves as the victim in every conflict.

Hopefully those who love Cyrus’s music don’t love the way she deals with minorities.

 

 

Trying To Understand Mini-Me

2 Feb

170739265KI00117_The_World_(Image by Ricky Brigante used under Creative Commons license via)

 

This month actor Verne Troyer (above) is featured in a National Geographic documentary series, Incredibly Small World, about the experience of living with dwarfism.  (Incredibly creative title, by the way.) Examining everything from the average-sized family of Amish origin he grew up in to his burgeoning career, Troyer hopes to spread awareness about dwarfs.  “Don’t look at us like we’re circus people!” he recently told The Daily Mail. Right on. 

But wait.  If you don’t want the world to see you as a circus freak, what was going on with Mini-Me?

While one of his most recent stints was in The Imaginarium of Dr. Parnassus, Troyer is by far known best as Mini-Me in the Austin Powers films.  According to his profile in The Lives of Dwarfs, he had been in the acting business for years and was grateful to finally land a role in which he portrayed an adult human.  All of his previous work had mirrored Kenny Baker—the actor inside R2D2— moving about in robot, baby, alien, and animal costumes.  But to call Mini-Me “human” is debatable.   

While the Austin Powers plotline claims he is a clone (one-eighth the size) of Dr. Evil and therefore in training to step in for the villain at any time, Mini-Me has little to no agency.  He doesn’t even speak.  Other characters refer to him as “like a dog” or “that Chihuahua thing.”  Slapstick has its rightful place in film, and all the characters in Austin Powers are blunt stereotypes meant to parody the James Bond genre, but it’s hard to watch Mini-Me portrayed pretty much the way dwarfs were handled by the aristocracy in Early Modern Europe – like a pet.  (And when fully-grown adults are handled as nothing but pets, it’s called slavery.) 

Austin Powers could have used Mini-Me to skewer the James Bond character Nick-Nack, but instead it merely perpetuated the gag.  Most minorities can name a famous character/caricature that makes their skin crawl—Tonto, Aunt Jemima, Mrs. Danvers—and Mini-Me is certainly up there for the dwarf community.

It makes me uncomfortable, but not enough to keep me from watching the films.  A lot of the scenes are as dull as the back-pages of an eighth grader’s notebook, but the jokes satirizing the Bond films are lovely: 

 

 

And Mini-Me is a funny name.  Just not the third time, or the fourth time, or the fortieth time that any given person with dwarfism hears it hollered at them on the street.

Today Troyer remains friends with Austin Powers creator Mike Meyers.  Cynics might say that networking is networking, and what dwarf actor wouldn’t remain loyal to someone who’d lifted him into the spotlight, no matter how dehumanizing the role?  Beggars can’t be choosers or bite the hand that feeds them. The tradition of the groveling dwarf actor grateful for anything he can get is so pervasive that Peter Dinklage has spoken out about the importance of dwarf actors turning down such roles for the sake of self-respect.  But when I see photos of Troyer schmoozing with Meyers, it reminds me of something other than begging or groveling.

Back when I was in elementary school, one of my classmates liked to lay his elbow on my head because I “made a great armrest.”  He would also regularly ask me, “How’s the weather down there, shorty?” to which my response was always, “Clouds of your bad breath.”  Not exactly Abbott and Costello caliber, but then again, we were eight.  I didn’t mind being the target of his jokes.  I almost liked it.  He wasn’t a close friend who’d helped me through any of my medical ordeals, but we knew each other, he talked to me and not only to laugh at my expense.  For this reason, I took his teasing as openness. 

That year was not an easy one in the schoolyard.  To be ostracized there means that those who don’t know you at all will hurl insults at your minority status from a safe distance, while those who do know you will stay eerily silent on the subject. This is why when someone talks both to you and about your difference, they seem to be demonstrating a delightful lack of fear. 

The millions of people who have giggled at Mini-Me, whether they are his viewers or his creators, aren’t necessarily harboring nasty views of dwarfs.  The difference comes down to who can not only laugh at him but talk to him, and who’s afraid to.

 

 

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?

 

 

Is Dwarfism A Disability?

27 Oct

(Image by Ron Riccio used under Creative Commons license via)

 

A more sober ending to Dwarfism Awareness Month

I remember being around 10 years-old when I began taking care to never refer to my dwarfism as an “illness” or a “disease.” An illness is something that tries to destroy you. It demands you go into battle. Even if you end up grateful for its having made you stronger, you’re glad when it’s gone. My dwarfism has always been around and I’ve never tried to conquer it. It’s a condition, a word as neutral as it is fitting. But is it a disability?

Many in the dwarf community insist that it is not. The thinking goes that being extraordinarily short is no more serious than being left-handed. We don’t think of left-handedness as a disability. It’s merely a difference, one of many physical features that can shape someone’s identity, like hazel eyes or an outie belly button. Being left-handed is only an inconvenience insofar as the world is built for those who are right-handed, and populated by some who still cultivate fear and hatred of those who don’t conform to the majority. Needing left-handed scissors and mouse buttons is not really thought to be an issue of disabled access – it’s more akin to needing glasses or extra-moisturizing shampoo. Diversity awareness over the last 50 years has led the vast majority of Westerners to shrug at the idea of left-handedness.

And such a neutral shrug is what dwarf activists seem to be coveting when they insist that dwarfism is not a disability. In the words of Andrew Solomon, “Neutrality, which appears to lie halfway between shame and rejoicing, is in fact the endgame, reached only when activism becomes unnecessary.” But is dwarfism only an inconvenience insofar as the world is built for those who are taller? It’s a compelling thought experiment, but it ignores all the medical complications I’ve had to deal with. And it raises the question: What is dwarfism?

The official definition, which lumps hundreds of skeletal dysplasias and growth hormone deficiencies into one category, is in fact only concerned with height. Little People of America defines a dwarf as anyone who stands fully grown below 4’10” (1.47 m). But height is relative. Women in Indonesia and Guatemala are 4’10” on average, which means that the LPA definition is based on a certain culture, and cultures are always changing as we move through time and around the world. As a pre-teen, I always got a kick out of seeing my towering parents become the minority at LPA meetings, while as an adult, I got a kick out of seeing my German-Swedish partner tower over my parents.

Physically, Warwick Davis and Peter Dinklage have no more in common than a black-haired Korean does with a black-haired Irishman. But they share many experiences rooted in society’s reaction to their short stature. They were both cast as dwarfs in the second Chronicles of Narnia film because the fantasy tradition cares first and foremost about looks, making up its convoluted ideas about heritage and separate races as it goes along. Most forms of dwarfism are caused by genetic mutations, but others result from chromosomal abnormalities, malnutrition, or even child abuse. Thus, because it encompasses all sorts of conditions with a tremendous variety of causes and complications, dwarfism is a social construct. Can a social construct be a disability? What is a disability?

This blog recognizes disability as a medical condition that causes you to experience more pain and/or limitations than the average person in your peer group, and therein attracts inordinate attention from society. And the attention has traditionally been negative. Disabled people carry a burden most other minorities do not in that we must argue that our lives and identities are no less valuable than anyone else’s, while at the same time admitting that we will always experience a good deal of pain no matter how accepting or accommodating society is. (Poor people are the only other minority that shares this burden.) This idea of inherent pain is what causes many activists in the autistic community and the transgender community to buck the disabled classification.

But when pain is indisputably inherent to a condition, it is frequently relativized in the hopes that this will reduce ableist attitudes. When I was born, the doctor pointed out to my parents that “everyone has something different about their bodies. One person has bad knees, another has a chronic skin rash. Emily’s difference is just a lot more noticeable than other people’s.” But does this mean that bad knees and skin rashes and seasonal allergies are all disabilities? There’s more to it than that.

If a medical condition is only minimally limiting and can be treated with standard procedures, we don’t really consider it a disability and rightfully so. While there is value in relativizing everyone’s struggles in order to calm our fears of the Other, it carries the risk of our failing to recognize differences that have much to teach us. The regular migraines I inherited from my mother don’t make me disabled. The pain can be intense and it’s infuriatingly inconvenient to feel one coming on at a dinner party while also feeling the hollow echo of an empty pill box in my bag. But the migraines are treatable—and not exorbitantly expensive to treat—and easily understood by others because plenty of people get them. Having to explain to people what my back and joints can and cannot endure is a more complex task.  Alleviating or avoiding the pain is even harder.

I interviewed friends and acquaintances with achondroplasia about the physical difficulties they regularly face. Some described always needing to lie down for at least half an hour whenever they vacuum for 10 minutes or more, and needing to get up earlier than everyone else on weekdays in order to afford themselves more time for walking to work or class. Everyone has trouble finding comfortable shoes that fit—women’s business shoes and sandals pose the biggest challenge—and many need to wear orthotics. Camilla, a college student who has not undergone limb-lengthening, told me:

I definitely believe I feel fatigue more easily than people my age. I went out dancing with friends last night and I had to stop and just stand for a while because my legs were starting to hurt. Also, when I walk places with my average height friends, my joints start to hurt while they feel almost no effects of fatigue at all… I would say that the hardest physical aspect of having dwarfism would not be the height difference but the extreme muscle and joint pain that seems to be more and more easily triggered as I get older.

And by “older” she means approaching her mid-twenties. These physical limitations would sound less surprising coming from senior citizens, which is why, as an advisor explained to me, your eligibility for disability status decreases as you age and aching joints become more common to your peer group.

A friend who had limb-lengthening at the same time I did told me, “I know if I’ve been on my feet all day, my ankles get really stiff and I’m limping around at home at the end of the night… as compared to my friends who work all day and still manage to hit yoga class, the gym, or cycling class afterwards.” Those of us who have undergone limb-lengthening can test whether achondroplasia is a disability because we control for the socially-constructed advantages of height. Yet in my interviews, I noticed that many who have had limb-lengthening are often reticent to talk about their current physical hardships lest someone conclude that all that time spent breaking and healing and growing bones was for naught.

Indeed, pride complicates our perceptions of pain. While hypochondriacs rejoice when they qualify as “disabled,” those who have regularly been reminded by peers and institutions of the supposedly pitiful nature of their condition are often less willing to revel in it. Those who reject the idea of calling dwarfism a disability are often motivated by the desire to de-stigmatize dwarfism. I of course understand this desire, but I don’t see how we can make the argument without stigmatizing disability. And I am suspicious of any mindset that supports a hierarchy by essentially saying, “At least I’m not like them.”

Like people of color, people with dwarfism are united only by society’s reaction to them, not by any medical traits. This is why I do not believe dwarfism itself is a disability. However, most types of dwarfism are. The way in which the physical pain brought on by achondroplasia intersects with social limitations is explained very well by Spoon Theory, an idea invented by Christine Miserandino, who has lupus. It bears repeating that I can only begin to imagine what living with lupus is like.  In the presence of someone needing to vent about the pain, I hope to be as wonderfully deferential as so many non-disabled friends have been to me. But the fact that lupus is an illness while achondroplasia is a not is no reason to ignore the fact that Spoon Theory perfectly illustrates the broader concept of chronic pain and fatigue experienced by people with all kinds of disabilities. Emily Brand described it eloquently in The Guardian last year:

The basic idea is that you have a limited number of spoons available for the day and each action will cost a given number of them – the more demanding the task, the more spoons would be required. The phrase “running low on spoons” can be a useful way of communicating the need for rest to fellow “spoonies” who also use this system and to friends and family who are in the know. Reading up on this is one of the best things anyone could do to help with providing day-to-day support to someone with a chronic health condition, as it’s a powerful analogy that can help people to empathise with how much of an impact even an invisible symptom like chronic pain can make.

I love the idea of “running low on spoons.” I used it just last week in explaining to a friend that I couldn’t peer with her into a store window because my swollen feet were begging me to keep off the cobblestones. But at the risk of sounding, well, confused, I’m not entirely comfortable calling myself a “spoonie” because experiences in college have left me averse to glamorizing conditions with labels that sound like club memberships. And between dwarf and has dwarfism and midget and little person and LP and short-statured and disabled and physically challenged and differently-abled, I’ve got enough labels to sort through.

 

 

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.

 

 

 

“Power for Good”

28 Jul

tumblr_mqm3ypKbXg1qz5q5lo1_500(Via)

 

Tropes are ideas we construct based on observing patterns in society and wanting to understand them. Stereotypes are ideas we construct based on hearing about patterns in society and accepting them at face value. Needless to say, stereotypes based on that which we have no choice about—our sex, gender identity, sexuality, ethnicity, nationality, physical traits, or mental abilities—usually do more harm than good.

Not only do they deny minorities equal rights and opportunities, but a recent study shows that embracing racial stereotypes leads to creative stagnation. So how do we combat them? 

In the wake of the Trayvon Martin verdict and President Obama’s call for a dialogue on race in America, Harvard researchers announced a competition to find the quickest, most effective method for getting people to let go of the prejudices they have about a certain group. The results? Calls for empathy and other try-to-put-yourself-in-their-shoes methods were largely ineffective.  What worked best was showing the participants counter-stereotypical images. World leaders with severe disabilities. Parents proudly painting their son’s toenails. Construction workers nursing their babies. Sons helping out with the housework.  Seeing is believing, apparently.

It is crucial to note that celebrating diversity can feel patronizing, especially to the subjects. The goal, after all, is to drive stereotypes to extinction so that observers find absolutely nothing extraordinary about any of the above images. Because the subjects do not feel extraordinary, at least not all the time – they feel normal.  No person who can qualify as a minority or counter-stereotype should feel pressured to spotlight their everyday life if they don’t want to.  But it is encouraging—if not unsurprising—to see that altering media portrayals of society alters a good deal of the prejudices plaguing too many corners of society.

As my friend Sarah Winawer-Wetzel recently said:

For me, it validates the importance of being out as a gay person. How else are people going to believe that a nice white Jewish girl who dresses femme and doesn’t look particularly counterculture can be queer if I’m not out like a friggin’ lightbulb everywhere I go? I’m not doing it just for me – I’m doing it so that when a little kid looks at the world and thinks about being gay, that kid sees the full spectrum of possibilities, not just a cultural stereotype. Those of us who control visuals and representations of people in the media need to remember to wield our power for good.

We often forget the power we wield when we have a stereotype in our hands, thinking it’s bigger than anything we can do about it. But it is not.  And that is wonderful.

 

 

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.

 

 

Who You Telling To Wear Makeup?

28 Apr

fashion show(Image by Alex Craig used under CC license via)

 

While chatting with colleagues over coffee this week, I ended up “outing” myself as a dwarf who’s had limb-lengthening.  (Experience has taught me some people notice right away when they meet me that something is up, while others go a long time without the slightest idea, especially in the wintertime when my scars are hidden under sleeves and pants.)  We arrived at this topic by discussing fashion—and the recent scandal in Sweden that’s left me almost speechless—and then beauty and self-confidence.  Several of my colleagues pointed out that every person they know who’s undergone cosmetic surgery never struck them as unattractive before the fact.  Only an idiot would think that there’s only one kind of beautiful nose or mouth or whathaveyou.  And only a jerk would tell someone to have cosmetic surgery.

As you may have guessed, I agreed wholeheartedly.  But what about telling someone to wear makeup?

This week, a man writing to Slate’s Dear Prudence advice column confessed he feels simultaneously guilty and helpless about the fact that some of his female friends are unlucky in love because “their looks are probably the only thing holding them back.”  Prudence tends give good, progressive advice, but this time, instead of telling him the ladies should move in less superficial circles, she suggested he pair them up with some similarly “average-looking” male buddies.  She then added, “If the problem with your female friends is not their intrinsic looks but the fact that they dress like schlubs or never wear makeup, then a guy’s perspective that they aren’t doing everything with what they’ve got could spur them into action.”

Ugh.  Say what you want about clothes, but the makeup debate is as messy and gunky as makeup itself, which is why I’ve avoided it up until now.  But am I the only one who thinks telling someone to start using makeup is entirely different from giving them your opinion about the way they dress?

Everyone, from my partner to my grandmother, rolls their eyes at certain fashion choices and, as I’ve said before, anyone who denies they ever do it is lying.  It betrays a pathetic insecurity to trash others’ dress for the sake of your own self-aggrandizement—e.g. “I wouldn’t be caught dead in that!”—but it is fair to say what just isn’t your cup of tea.  We can snark a little about someone’s clothes, hairstyles, accessories, headgear or makeup style (if they have one) without too much malice because someone is probably snarking about ours.  No one on earth dresses in a way that is universally attractive because there is no such thing as a universal beauty standard.  And as the saying goes, there is no arguing taste.  Someone thinks this is kick-ass, and someone else thinks it’s sloppy:

Captain Jack Sparrow

Someone thinks this is dreamy and someone else thinks it’s one big yawn:

Jason Straatmann Actor Japan Suit Tie Cufflinks Model

Someone thinks this is sexy and someone else thinks it’s garish: 

Untitled

People find beauty in this:

Traditional Korean dance

Or this:

Ethiopia, Mursi woman

Or this:

Bollenhut-Gutach

Or this:

4601942293_27f40e0122_o

Or this:

Namibië, oktober 2008

Or this:

 
And that’s just a tiny sample from around the world. There is even more variation across time because, as Oscar Wilde said, “Fashion is a form of ugliness so intolerable that we have to alter it every six months.”  I think some of my friends, like some of the subjects above, have a great sense of style, while others do not.  They in turn probably think the same about me.  But if any of them thought I should wear makeup more often than I do—which is almost never—and told me so, they wouldn’t be my friends.  But what if they’re my supervisors?      

In January, a study featured in The New York Times revealed that (American) women who wear makeup are considered more competent and more likable in the workplace.  A panel of stylists and professors made various points about this that basically all boiled down to, “It’s a choice.  If it makes women feel more confident, they should go for it.”  But if the study indicates that their confidence would result from garnering more positive attention for their looks, then their lack of confidence without makeup would result from a fear of not getting attention for their looks. 

Many modern women, especially lipstick feminists, repeat, “Empowerment is all about being free to choose!”  There is truth in this.  I know guys who were bullied in school for wearing concealer or plucking their eyebrows.  Women meanwhile are often forced into a nearly impossible balancing act wherein no makeup = plain Jane, but too much = slut, and kudos to anyone who refuses to play that game.  Good girl culture, as well as the results from the study, assert that “less makeup is more – you should look like you’re not wearing any.”  This rule seems potentially problematic to me because it is insidious.  If someone gets used to just slightly “improving” their face every day, it is more likely they’ll feel insecure without these improvements.  I occasionally enjoy wearing heavy makeup bordering on the outrageous (like glitter), but it feels like a mask and everyone knows it’s a mask.  When it’s so obviously part of a costume, there’s not much danger that I’ll start considering it an inalienable component of myself.  But the subtle makeup seems to be a lot harder for people to let go of.  I know women who refuse to be photographed without their makeup on—and you probably do, too—and if that doesn’t sound like an unhealthy insecurity, I don’t know what does.

In any case, it doesn’t sound like they are “free to choose,” as lipstick feminists advocate.  As I’ve written before in explaining my choice to have my limbs lengthened, we should be free to make complex decisions about our bodies without others making snap judgments about our motivations.  Anyone who does is a coward.  But it is also cowardly of us to voice hatred for our natural faces and simultaneously deny that this has any impact on others.  In the words of philosopher Arthur W. Frank, “When we make a choice, we confront others with that choice.”  The freedom to choose diminishes when a strong majority bends in one direction, because majorities create social pressure.  In a society that literally rewards women who wear makeup—i.e., with higher salaries—it is undeniable that many do so in order to win these rewards, ultimately playing by the rules under the guise of empowerment.  The cosmetics industry, like any industry, always aims to make their customers feel that they cannot live without their product and so they too have embraced the slogan of “Empowerment!”  Leading The Onion to smirk, “Women Now Empowered By Everything A Woman Does!” 

It would be obnoxious of me to assume that every woman with a compact in her purse does it to acquiesce.  I know and admire selfconfident women who love putting on bright red lipstick and self-confident men who wish they could, too, without being gawked at.  Primping can be fun.  Painting your skin certain colors can make you feel fine and refreshed, like slipping into a brand-new top or getting a new haircut.  Or brushing your teeth after a hangover. 

But it’s not quite the same thing, is it?  Once again, it’s a mask.  A friend of mine who loves dressing up but hates wearing makeup recently said, “I guess, ultimately, it’s weird looking in the mirror and seeing something that doesn’t look like me.  I don’t really like makeup on other people either though, so perhaps it’s a general class of trying to hide oneself that bugs me.”   

Indeed, that is one of my many reasons for rarely ever using cosmetics, why I graciously declined friends’ offers to do me up on my wedding day, why I cringe at the idea of anyone pressuring women into it.  I also like being able to rub my face without having to worry about smudging.  I’d rather spend the money on a million other things.  My partner hates the taste of cream, gloss or powder—“Kissing someone wearing foundation is like kissing a sandbox!”—and I must say I don’t blame him.  Most importantly perhaps, I don’t understand why our culture believes that women’s faces require some paint in order to be attractive but men’s faces don’t.  If I can’t compensate for the plainness of my natural face with my charisma, then no one should be able to.

Of course, almost all of us conform to our culture’s beauty standards to some degree.  I’ve worn concealer for blemishes and plucked my eyebrows to make them even, but I feel a strong attachment to my scars and so I’ve kept them.  I don’t always like my face—don’t we all have those days when we look in the mirror and just feel yucky and dissatisfied?—but even if I thought putting on some modern Western style of makeup would make me look “better,” it wouldn’t look like me.  Experience has also taught me that a dissatisfaction with one’s looks is almost always rooted in something more substantial: feeling not very fit, feeling overtired and stressed, feeling lazy because there’s been too much or too little to do.  And even if it’s not, I often feel very satisfied with my face, so on a bad day why not simply walk away from the mirror, focus on something a little more profound than my appearance, and have confidence that the feeling of self-satisfaction will return?

As psychologist Nancy Etcoff wrote in The Times:

Women who feel that makeup use is obligatory but unwanted, that it requires a forced confrontation with the mirror when they’d rather put their attention elsewhere, do not feel more confident after using it.  Research suggests that women can feel objectified by makeup, and for such women, any potential advantage may be offset by the emotional labor of wearing it.

And, in an excellent article on weddings, Ariel Meadow Stallings of Offbeatbride.com writes:

I’ve been thinking a lot lately about the pursuit of authenticity versus the pursuit of attention.  The first feels very internal, like you really have to look with-in yourself with a lot of introspection and thought to determine what’s important … while the other feels very external, like you’re hunting for other people’s eyeballs.  And why does one seem like so much fun, while the other seems like so much work? …

I guess it comes down to this: Attention gives you the cheap high of other people’s energy focused at you … but authenticity gives you that deep, long-lasting satisfaction of knowing that you’re on the right path and you’re doing the right thing.  While the quick high is more fun in the short run, the deep satisfaction is ultimately more filling.

This is why it is fine to wear makeup but wrong to tell someone else to.  Not only is it a ludicrously presumptuous, boundary-crossing thing to say—like telling someone to switch careers or leave their spouse—but it’s vacuous because it has nothing to do with matters of justice or morality.  It is sheerly a matter of beauty standards.  The worst thing about beauty standards is that they create peer pressure based merely on taste.  The best thing about them is that, as seen above, there are millions of them, and they are constantly changing.  If humans are capable of thinking the lip-plate is attractive, then surely we are capable of thinking a woman without makeup is attractive. 

Women and men should feel free to smear their faces with whatever they wish or go without, to pluck their eyebrows or leave them be, to shave any body part or refrain.  (Bearing in mind doctors have recently explained the cringeworthy risks of shaving certain parts.)  But the moment they say that someone should do the same in order to feel better or lure lovers or advance their career, we have a problem.  And it’s not physical.

 

 

Who Gets Stuck in the Friend Zone

24 Mar

Love for all!(Image by Matthias Ripp used under CC license via)

 

Well, I finally sat down and saw The Phantom of the Opera a quarter of a century after everyone else.  (If you don’t know the story, this parody sums it up pretty well.)  I won’t say what I thought of all the songs songs songs because I’m bound to alienate half my readers either way, but by the second to last scene, I was hollering at the screen: “Girl, you’d better not go for that swaggering bully in the mask!”  But then she ripped the mask off and he couldn’t stop crying and I was up to my eyelids in Kleenex, wailing: “If only he hadn’t killed so many people!  (And talked to her instead of stalked her… )  Now he’s just another disfigured guy stuck in the Friend Zone!  But his pain is reeeeeeeeal!”

This week, the word “Friend Zone” has been entered into the Oxford English Dictionary.  Many of my favorite feminists are not pleased.  Because the term is generally thought to be something only straight, bitter men complain about (see these Urban Dictionary definitions), many argue that it’s a misogynistic trope.  Lamenting the Friend Zone sends the message, however subliminally, that spending time with a female is pointless unless you gain access to her naughty bits.  Because who would want to be friends with a woman?! 

Such a bleak view of women is certainly a problem among many men.  In the words of John Mix Meyer, “Girls are not machines you put kindness coins into until sex falls out.”  Nice for the sake of nice is respect.  Nice only for the sake of getting laid is not.  As I’ve said before, cross-gender friendship could use a lot more support in books, film, and mainstream society.

But I’ve also used the word “Friend Zone” before because I don’t believe it refers only to this one chauvinistic idea.  Unrequited love isn’t fun for anyone.  Lots of women have been stuck in the Friend Zone, too.  Many people are expected by pop culture to always end up there, because society deems them asexual, and it could be helpful to examine why.  Almost every adult on earth craves love and sex, and we are all trying to figure out what attracts those we deem attractive. 

Men who sigh, “Girls don’t like nice guys,” need to get over their narcissism.  But there are others who wonder in earnest why the Friend Zone seems so jam-packed with quiet guys who genuinely respect women.  In stories of every genre, from classic literature (Madame Bovary) to modern literature (Freedom) to dime-a-dozen bodice-rippers (The Bridges of Madison County), bored heroines look past their straight-laced suitors to the tall dark stranger who’s not exactly famous for his fidelity or his feminism.  Love triangles always make for good drama, but when the heroine more often than not decides that the devoted sweetheart belongs in the Friend Zone and the unpredictable bad boy belongs in bed, many scratch their heads and repeat, “Why do girls always go for jerks?”  Or, as The Mr. T Experience sings, “I have some problems… but even Hitler had a girlfriend, so why can’t I?”

The answer often depends on the situation, but there are two fundamental, heteronormative traditions that prop it up:

The Macho Stereotype – Any guy who isn’t strong and independent to the point of being daring isn’t a “real man.”  Obeying the rules, doting on your wife, and being mediocre is emasculating.  Hence the double standard men are held to in real life: they are always expected to focus more on their success and autonomy than their emotional fulfillment.  Sociologist Stephanie Coontz has pointed out that the inordinate importance of independence to male worth is why homeless men arouse so much more disgust than homeless women.

The Gentler Sex Stereotype – A nice girl can see the diamond in the rough.  A man with a nasty wife is hen-pecked and pathetic, but a woman with a bad boy just might be the only one who understands him.  From a conservative standpoint, it’s virtuous of a woman to be so selfless and forgiving.  From a liberal standpoint, it’s the thrill of conquest that keeps her trying.  

A man’s worth is defined by his success, albeit many women accept broad definitions of success.  Western romances across the ages assert that special girls who search for the softer side of the bully or the bad boy will find it: Beauty and the Beast, Wuthering Heights, My Fair Lady, The Sound of Music, The Music Man, Guys and Dolls, Bonnie and Clyde, right up to Fifty Shades of Grey.  Pop culture reiterates ad nauseam how much men love the chase, but this trope shows that scores of women do, too.  For the starry-eyed heroine, it’s a challenge to stray from the disapproving masses—or her parents—and become the One Special Woman who can tame the beast and bring joy to his lonely life.  The higher the risk, the greater the reward.  The reward is knowing that she is deeper, different from those other girls who swoon over bland perfection.  Hence even America’s most famous feminist, Lisa Simpson, has looked past loyal, bespectacled Milhouse for Nelson, the schoolyard bully from a broken home.  

By far the most horrific result of this romantic tradition is the fact that too many women in real life endure abuse, or worse.  Pop culture sometimes concedes this and still has the audacity to romanticize it.  My high school did a production of Rodgers & Hammerstein’s Carousel the same year Time magazine declared it the Best Musical of All Time.  After wife-beater Billy Bigelow dies in an armed robbery, his widow tells their daughter, “It is possible, dear, for someone to hit you, hit you hard, and it not hurt at all.”  You see, truly devoted wives know that offering yourself up as his punching bag is a way to show your love and nurture him as he struggles with his demons.  Only a selfish bitch would leave him when he needs her most.

Carousel was written in 1956, but the trope is still going strong.  The final film of the Twilight series lead NPR’s Linda Holmes to observe:

When a saga popular with pre-adolescent girls peaks romantically on a night that leaves the heroine to wake up covered with bruises in the shape of her husband’s hands — and when that heroine then spends the morning explaining to her husband that she’s incredibly happy even though he injured her, and that it’s not his fault because she understands he couldn’t help it in light of the depth of his passion — that’s profoundly irresponsible.

Yes, we’re all having a good yuk over the unhinged quality of it all.  And yes, it’s a movie with a monster baby… But romanticizing an intimate relationship that leaves bruises and scars is a particularly terrible idea in a film aimed at girls.  Talking about this is tiresome, but then so is putting it in the movie.

Indeed.

But attraction to the forbidden is not always dangerous.  Sometimes the bad boy is just misunderstood.  There is a powerful romantic tradition of fine ladies risking wealth and status for true love.  (See Aladdin, Titanic, Robin Hood, Moulin Rouge, Lady and the Tramp, Lady Chatterley’s Lover, The Pirates of Penzance, The Pirates of the Caribbean.)  There are also classic tales of heroines opening the gates to social progress by debunking their families’ horrid prejudices when they fall for men outside their race/nationality/religion/species.  (See Pocahontas, South Pacific, Fiddler on the Roof, The Little Mermaid.)  The heroines of Guess Who’s Coming to Dinner and Angst essen Seelen auf stare down the racial tensions of the era in which the films were released.  Meanwhile, Cyrano DeBergerac and the Phantom of the Opera both find out—albeit too late—that their beloveds would have looked past their disfigurement and loved them back. 

Since then, we’ve seen heroines end up with men with disabling injuries (often from war), while a handful go for guys who are congenitally disabled or disfigured.  As noted recently, Peter Dinklage’s romantic roles are possibly, finally breaking dwarf men out of the Friend Zone.  Great art obsesses over the blurry border between right and wrong, friend and lover, beauty and banality.  These compassionate heroines who try to understand the “bad” boys and the rejects help us deepen our perceptions of attractiveness.

It’s worth noting that the Phantom and Cyrano compensate for the supposed repulsiveness of their disfigurement with the sexiness of their genius.  They are supercrips.  Granted Gothic tales love to examine the complexity of blinding light draped in darkness.  I like a study of conflicting traits as much as the next starving liberal arts grad.  But it’s a ludicrously ableist tradition that only gives disabled superheroes a shot at intimacy, restricting ordinary disabled men like Quasimodo or the Seven Dwarfs to the Friend Zone.  And it’s an absurdly lookist tradition that restricts almost all of our disfigured and disabled women there.

Can you name a famous heroine who’s disfigured or physically disabled?  (Can you name a famous actress who’s visibly disabled, for that matter?  I might be able to, but I’d have to check Wikipedia to be sure.)  In the old days, disabled and disfigured girls might arouse sympathy (see Helen Keller), but the women were hags.  Period.  If women who were merely not conventionally attractive ever dared to step out of the Friend Zone and into the dating game, they were annoyingReally annoying.  And they were swatted away like flies.

Nowadays, love stories try to speak to women’s insecurities about their looks with quirky retellings of the Ugly Duckling or Cinderella.  The heroine perceives herself as unattractive, moaning, “Is it because of my [thighs/eyes/nose]?!”  (Rather than cursing, “That shallow jerk stuck me in the Friend Zone!”)  But we eventually see that she truly is a knock-out and it’s just a matter of finding the right man who will wipe the soot off her face, pay for a makeover, or simply remove her glasses.  Children’s films are getting a little better: Shrek and The Princess and the Frog feature heroines who are green-skinned for part of the courtship, though their Otherness is not quite as realistic as the Phantom’s or Quasimodo’s.  We’ve yet to see a heroine angrily unveil a severe facial deformity and hear her strapping lover say, “I think it’s intriguing.  And I wanna knock boots with you.  So.  Bad.” 

And why not?  Francis Bacon said, “There is no exquisite beauty without some strangeness in the proportion.”  I’ve overheard countless guys say, “Chicks dig scars.”  Which is true.  Lots of chicks got scars, too.

The popularity of a story is by no means an empirical examination of our values.  Most people I know are so much deeper than pop culture gives us credit for.  And there is a lot more to many of these stories than the tropes I just reduced them to.  But it would be daft to pretend that they have nothing to do with our collective psyche.  Every one of us treasures those romantic moments we experienced that were “just like in a movie.”  Our most popular books and films simultaneously reflect and influence what we tend to think is hot.  And when it comes to opening our minds, fiction is often the best messenger.  We look to entertainment for escape and to art for enlightenment.  The most powerful stories provide both. 

When I attended a lecture at the Network of Disabled Women in Berlin two weeks ago, there was a debate as to whether reality TV shows and documentaries help or harm perceptions of disabled women.  Good documentaries smash stereotypes by providing facts and figures, but the over-representation of disabled women in such reports combined with their invisibility in love stories, detective stories, and silly sitcoms suggests that they exist solely as objects of study.  They are there to satisfy our curiosity, but we’re rarely asked to root for them the way we root for Rapunzel or Bridget Jones.  We never follow them on a journey dripping with passion.  We should. 

The Oxford English Dictionary’s newborn definition of “Friend Zone” reads: “a situation in which a platonic relationship exists between two people, one of whom has an undeclared romantic or sexual interest in the other.”  It doesn’t say it’s exclusively a problem for men.  And good for them.  To me, the term will always evoke the potentially destructive idea that certain “types” of people don’t ever need or deserve intimacy.  And we’ve got to keep questioning it.  Children, animals, and self-proclaimed asexuals automatically belong in the Friend Zone, along with your clients, patients, and students.  The disabled, the disfigured, the elderly, the ordinary, and the unsuccessful do not automatically belong there.  I’m counting on all of us, the storytellers and the lovers, to recognize the word so that we can recognize the problem.

 

 

Wheelchair Problems

24 Feb

Wheelchair  (Image by Joshua Zader used under Creative Commons license via)

 

Whether you are left-handed and in search of scissors, or dark-skinned and looking for “flesh-colored” bandages in the West, almost every minority experiences problems not just of prejudice but of practicality.  Facing the combined forces of social constructs and innate challenges can be exhausting.  Few discussions on difference encapsulate this better than Wheelchair Problems.  Run by a high school senior named Gina, the site primarily features memes, such as:

 

hands

curb

pee

stairs

 

When I discovered the site this past fall, the memories came flooding back.  I used a wheelchair for a total of only two years (ages 11 to 12 and 16 to 17), so while many of these memes perfectly illustrate my experience, others wake me up to situations I’ve never faced or considered.  It’s an excellent catalyst for simultaneously building community and spreading awareness to those outside the community.  Almost every one of the Problems merits volumes of social critique and philosophical debate, but they also demonstrate that you need not sign up for a three-day seminar on diversity to get the message. 

I’ve discussed the inherent problems of micro-blogging before.  But  when the marginalized have the microphone, brevity is often not just the soul of wit but of agency.  In an age when disabled people are still portrayed as either helpless victims, freakish villains, or larger-than-life heroes, we need more sites like Wheelchair Problems.  Kinda now.

 

 

“Richard III Was Dwarf, Doctor Says”

10 Feb

KING RICHARD III (Image by Leo Reynolds used under CC license via)

 

From an article appearing 20 years ago in The Seattle Times on August 23, 1991:

King Richard III was a dwarf, according to a medical diagnosis that has outraged defenders of the monarch.

“The combination of slow growth and short stature, preceded by a difficult breech birth… and intimations of physical weakness and sexual impotence… suggest idiopathic pituitary dwarfism,” Dr. Jacob Van der Werff ten Bosch said in an editorial published today in the medical journal Lancet.

Balderdash, say Richard’s partisans.  “Everyone knows Shakespeare’s Richard III, but not everyone knows the historical evidence,” said Jack Leslau, a biographer of the king. “There are various medical theories that all work on the assumption that he was some sort of monster with a physical deformity.”

The Lancet editorial was timed for the anniversary of Richard’s death in battle Aug. 22, 1485, at Bosworth Field – where, as Shakespeare had it, the monarch offered “my kingdom for a horse!”

Van der Werff ten Bosch, a former professor of medicine, says there is no reason to take offense. “As a doctor I would not think it’s ridiculing a king to call him a dwarf. It’s simply a medical diagnosis,” he said.

Since the excavation and analysis of the royal bones announced this past Monday, the BBC now reports, “Richard III was portrayed by Shakespeare as having a hunched back and the skeleton has a striking curvature to its spine. This was caused by scoliosis, a condition which experts say in this case developed in adolescence. Rather than giving him a stoop, it would have made one shoulder higher than the other.” 

So what Dr. Van der Werff ten Bosch said all those years ago was wrong.  At least half of it, anyway.

 

 

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.

 

 

The Year In Review

30 Dec

Hidden Object(Image by Hans-Jörg Aleff used under CC license via)

 

When I launched Painting On Scars at the beginning of this year, I had loads to say and almost as much worry that few would be interested in issues of disability and physical difference.  As the year comes to a close, I look back and see that the posts about ableism and lookism have generally been the most popular, followed by my spring article about family planning, reproductive rights, and privacy.  This hasn’t been the only surprise.

Lots of people find this blog by googling “dwarf + woman + sex.”  I have no idea who these people are.  They may be fetishists, they may be researchers, they may be women with dwarfism.  Your guess is as good as mine.

Since March, Painting On Scars has been read in over 100 countries.  To the surprise of few, no one in China reads it.  To the surprise of many, at least one person in Saudi Arabia does.  So have people in St. Lucia, Jordan, and Benin. 

Thanks to blogging, I’ve discovered there is a considerable online community committed to combating ableism with its own terms and tropes such as “supercrip” and “inspiration porn.”  I love such communities.  I also love bridging communities.  Because responses to my blog have shown me, perhaps more than anything has, that I want to talk to everyone.  And I really don’t care what your label is. 

I don’t care if you consider yourself Republican or Democrat or feminist or anti-feminist or religious or atheist or socialist or libertarian or apolitical or intellectual or anti-intellectual.  Well, okay, I do take it into consideration.  Somewhat.  But there is rarely consensus when we ask that everyone define these terms.  And none of them carries a guarantee against nasty personality traits like narcissism and defensiveness and aggression and cowardice.  Novelist Zadie Smith noted that we are told every day by the media and our culture that our political differences are the most important differences between us, but she will never be convinced of that.  When lefty comedian Jon Stewart was asked earlier this year if there’s anything he admires about right-wing hardliner Bill O’Reilly, he said, “This idea that disagreeing with somebody vehemently, even to the core of your principles, means you should not engage with them?  I have people in my own family that make this guy look like Castro and I love them.”

This is not to say that it’s all relative and I see no point to social justice or politics.  On the contrary, difference continues to be marginalized by the tyranny of the majority, as evidenced by the fact that the number one Google search term that has brought readers to my blog is “freaky people.”  And far too many kind people will more readily lash out at a person or group whose recognition demands they leave their comfort zone, rather than the forces that constructed and defined their comfort zone.  Well-intentioned friends and parents and bosses and classmates and leaders and partners and siblings and colleagues are capable of the vilest selfishness when they are scared of a power shift.  (As the Christian activists pictured above acknowledge.)  This is heart-breaking.  And it is not okay. 

But on the flipside, people are constantly smashing the prejudices I didn’t even know I had about them.  Every day friends and family and strangers demonstrate strengths that highlight all the mistakes I make, proving to me that politics are tremendously important but they will never be the most important element of a human being.   That may be a political idea in itself, but regardless of the divisions, most people on earth do seem to believe deep down inside that everybody matters.

And that’s what makes the struggle for social justice worth it.  If you are friendly and well-mannered and generous and honor your commitments and don’t let your self-doubt make you self-centered and try to listen as much as you talk and are honest about your problems without fishing for compliments and are big enough to apologize when you’ve screwed up, I respect you and admire you and am humbled by you.  I want to do the best I can because of you. 

 And since you’ve read this far, it’s more than likely you’re good at listening.  Thank you and happy new year!

 

 

Degenerates, Nazis, & the U.N.

16 Dec

(Via)

 

A reaction to last week’s post about the U.N. Convention on the Rights of People with Disabilities sparked a behind-the-scenes discussion about whether or not I should allow name-calling in the Painting On Scars comments section.  I like to engage with almost anyone who disagrees with me, but online I know I also tend to only comment on sites that have strict no-drama policies because discussions can become pointless and boring really, really fast when there’s nothing but insults and exclamation points.  I ultimately decided that, for now, any rude behavior speaks for itself: Commenters can name-call all they want regarding people they dislike or say absolutely nothing, because in both cases they’re not going change anyone’s mind.

That said, I will always tell any supporters if they adopt tactics I want to have nothing to do with.  And it’s important to call out invectives that are particularly malicious in a way some might not be aware of.  The comment in question last week referred to the U.N. as “a bunch of degenerates, throat cutters, and other trash.”  Using the word “degenerate” in a discussion about disability rights is exceptionally insensitive, if not mean-spirited.    

The first time I read the word out loud to a friend here in Germany, his eyes shot up and said, “Be very careful with that word.  It immediately makes everyone think of the Nazis.”  And by “Nazis,” he meant the actual, goose-stepping, genocidal nationalists who tried as best they could to make sure disabled people either died off or were killed off.  Not “Nazis” in the Internet-temper-tantrum sense of “anyone I disagree with.”  The word also evokes the brownshirt term “degenerate art.”  Modern German sensitivity to the term is the result of looking honestly at the nation’s history of ableism.

Action T-4 was the first genocide program ordered by the Nazis, calling for the extermination* of those deemed by doctors to be “incurably sick.”  Between 200,000 and 300,000 disabled people were killed, though many were used for scientific experiments first.  *And by the way, I DETEST any use of the term “euthanasia” in this context.  “Euthanasia” literally means ending life to end pain, and for this reason I find it applicable where patient consent has been given or where pets are concerned.  But to imply that what the Nazis did to disabled citizens was anything other than murder is to dehumanize the victims.

The forced sterilization programs of disabled people in Nazi Germany, meanwhile, were modeled after American laws.  The very first forced sterilization law in the world was introduced in Indiana in 1907, and 30 states followed suit.  The Supreme Court upheld Virginia’s eugenics program in 1927 and it remained on the books until 1974.  Oliver Wendell Holmes summarized the Supreme Court’s decision thusly:  

It is better for all the world, if instead of waiting to execute degenerate offspring for crime or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind…  Three generations of imbeciles are enough.

The Nazi poster featured above focused instead on the expense: “It costs the German people 60,000 Reichsmarks to keep this genetic defective alive.  Fellow German, that is your money!”  After World War II, the Nuremberg Doctors’ Trial and the resulting Nuremberg Code discouraged ableist politicians from openly promoting eugenics on either side of the Atlantic.  But it wasn’t until 1981, the year I was born, that the disability rights movement in West Germany came into full swing and sought to combat ableism head-on. 

Almost every human rights movement is said to have a trigger moment when oppression went a step too far and the people fought back.  For the American Civil Rights movement, it was the death of Emmett Till.  For the gay rights movement, it was the Stonewall Uprising.  For the German disability rights movement, it was the Frankfurt Travel Ruling of 1980, brought about by a woman suing her travel agency for booking her in a Greek hotel where a group of Swedish disabled guests were also vacationing.  She claimed that having to see and hear disabled people had ruined her trip and the judge agreed with her.  Protests exploded across the country and the next year, which the U.N. had declared the Year of the Disabled, several West German disability rights groups organized and formed agendas.  They used the U.N. events to draw attention to the dire situation of disabled citizens in the country.

Two years later, the Green Party entered the Bundestag for the first time and was the first to voice support for disability rights as a human rights issue.  The Greens were born out of the 60s student movement in West Germany.  The movement was famous for protesting what most young activists across the Western world opposed at the time: the Vietnam War (and war in general), traditional gender roles, consumerism, pollution, etc.  But first and foremost, the West German 68ers were young people demanding the nation come to terms with its dark past, decrying that an overwhelming number of the nation’s leaders and officials were former Nazis.  Their commitment to human rights was inspired by an unfaltering awareness of how horrific things can get.  Their actions led to the passing of anti-discrimination laws and an amendment to the German Constitution in 1995, modeled after the Americans with Disabilities Act.

Another result of the students growing up and entering the government came in 1983 when conscientious objectors to the draft were no longer required to argue their motivations before a board for approval. This made it far easier for young men to opt for a year of community service in lieu of military service.  By 1991, half of those drafted became conscientious objectors.  For over 30 years, scores of German 19 year-old boys worked with mentally ill children at the Red Cross, in nursing homes, as assistants for physically and mentally disabled teenagers, and for Meals on Wheels.  This has created generations of men who often speak fondly of the experience and who are usually less fazed by disabilities or dependence, demonstrating a tolerance and openness that seems extraordinary for their age. 

The draft was discontinued last year and since then the community service option has been suspended.  Military debates aside, I agree with conservative politicians who have called for preserving the community service requirement and expanding it to women because it is an excellent government tool for combating both ableism and social segregation on a personal level.  Ableism is still a tremendous problem here in Germany, but in three generations, the country has changed from one of the most ableist societies on earth to one of the least.   The word “degenerate” signifies humanity’s capacity for cruelty and sensitivity to the word signifies our commitment to never repeat it.

To be fair, the word in last week’s comment was not aimed directly at disabled people but at the U.N. members working for disability rights.  And frankly, I’m a little insulted.  Because if anyone’s a degenerate here, it’s me. 

I am scientifically a mutant by virtue of my fibroblast growth receptor gene 3.  (Yes, yes, my genetics professor explained that technically all of us are mutants, but mostly just in boring ways… )  I am a semi-invertebrate now that pieces of my backbone were removed six weeks ago.  And I don’t take the last empty seat on the subway and request my friends slow down to my pace when walking for nothing.  So if anyone’s gonna go calling the organization that sprang from the Nuremberg Trials and founded the Universal Declaration of Human Rights a bunch of degenerates, they gotta get through me first.  I’m a degenerate living in Germany and proud of it.

 

 

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.

 

 

Dragging Entertainment Into the 21st Century

21 Oct

(Via)

 

This week, humor site Cracked.com features a great article by J.F. Sargent titled “6 Insane Stereotypes That Movies Can’t Seem to Get Over.”  Alongside the insidious ways in which racism, sexism, homophobia still manage to persevere in mainstream entertainment, Number Two on the list is “Anything (Even Death) Is Better Than Being Disabled”:

In movie universes, there’s two ways to get disabled: Either you get a sweet superpower out of it, like Daredevil, or it makes you absolutely miserable for the rest of your life. One of the most infamous examples is Million Dollar Baby, which ends with (spoilers) the protagonist becoming a quadriplegic and Clint Eastwood euthanizing her because, you know, what’s the point of living like that? Never mind the fact that millions of people do just that every day…

Showing someone using sheer willpower to overcome something is a great character arc, and Hollywood applies that to everything, from learning kung fu despite being an overweight panda to “beating” a real-world disability. The problem is, this arc has some tragic implications for the real-world people who come out with the message that they are “too weak” to overcome their disabilities.

The result is that moviegoers think that disabilities are way worse than they actually are, and filmmakers have to cater to that: For example, while filming an episode of Dollhouse where Eliza Dushku was blind, the producers brought in an actual blind woman to show the actress how to move and get around, but the result was that “she didn’t look blind,” and they had to make her act clumsier so the audience would buy it.

Even in Avatar, real paraplegics thought that Sam Worthington’s character was making way too much effort transferring from his chair, but that’s the way we’re used to seeing it in movies. It’s a vicious cycle, and it isn’t going to stop until either Hollywood wises up or people with disabilities stop living happy, fulfilling lives.

I’ve examined Hollywood’s ableist problems several times before and there are still plenty to dedicate an entire blog to.  But, like The Daily Show or The Onion, Cracked has a long history of excellent social critique embedded amongst the fart jokes and it’s awesome.  Especially when considering that not only mainstream but alternative entertainment all too often can’t seem to let go of the tired stereotypes.  That Cracked is a site not officially dedicated to politics or social activism suggests that the comics writing for it believe calling out the industry for its embarrassing ineptitude is just common sense.