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

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:

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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.

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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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Tags: Beauty Standards, Body Image, Disability, Dove, Feminism, Girls, Lookism, Parenting, Selfie

Comments 3 Comments
Categories Scars & Appearance, Scars & Physical Ability, Scars & Psychology

The Best Book of 2013 (and the 21st Century)

30 Dec

“Though many of us take pride in how different we are from our parents, we are endlessly sad at how different our children are from us.”

So begins Andrew Solomon’s Far From the Tree: Parents, Children and the Search for Identity, a book that profiles families with children who are profoundly different from their parents – deaf, gay, autistic, short-statured, schizophrenic, transgender, intellectually disabled (Down Syndrome), multiply disabled, born out of rape, prodigious, and criminal. With every story, Solomon ends up returning to the same question: What is family? And in asking this, he demands, again and again, What is love?

He conjectures that true love is 30% knowledge of who someone is, 30% percent acceptance of who they are, and 30% projection of who they are. Projection is as indispensable as the other elements, but it is by far the most problematic. Love is threatened when it relies more on projection than anything else. When driven by a fear of being alone, projection can dangerously blind us to others’ faults: “You like the same bands I do?! You must be so deep!” When driven by a fear of being burdened, it can dangerously fuel our least empathic feelings: “I can’t handle taking care of a freak!” It would seem that our best hope for filling our lives with true love is to be better informed. If so, Solomon’s book is an ideal source of information.

He writes poignantly of his own mother’s difficulty accepting his homosexuality. In the West today, we are just as quick to judge parents who seem to hurt their children as we are to judge children who seem to hurt their parents. But in examining his mother, Solomon wisely observes that “she did, like most parents, genuinely believe that her way of being happy was the best way of being happy.” Who among us does not tend toward such self-righteousness?

I’ve never met anyone who doesn’t pride themselves on something they believe they do better than their parents did, an improvement they would like to pass on. Even my friends who take little interest in children tend to talk about their hypothetical progeny as projects: e.g. “My kids will never/always… ” And with projects come projection. The children in Solomon’s book, himself included, are dynamite to that projection.

While he is determined to understand his mother’s feelings that caused him so much pain, he is unwavering in his assertion that homophobia, ableism and all other irrational fears have no place in the future of a healthy society. He calls the forces that inspire current legislation limiting the rights of minorities a “crisis in empathy.” And he practices what he preaches – his determination to empathize with the United States’ most marginalized families is utterly humbling. He does it not only for the sake of compassion, but for the sake of practicality. We’ve already tried condemning and isolating the kinds of people who make us uneasy. On a grand scale, it hasn’t gotten us anywhere.

When I described the book to friends – many themselves minorities – several winced at the idea of rape victims and schizophrenic people. “Sounds like a fun book!” they sighed. Such reactions are hardly unknown to Solomon, who notes, “One’s own identity, replete with problems though it may be, usually looks more tenable than someone else’s identity.” Indeed, my own gut reaction is to glare at anyone who dares to compare the experience of having a child with dwarfism to the experience of having a child who grows up to murder students at Columbine High School. But gut reactions tend to be more hurtful than helpful. “At the mention of dwarfs,” Solomon writes, “[some of my] friends burst into laughter.” Fear always conquers by dividing us, and for this reason I adore Solomon’s ferocious intersectionality. It is rare but contagious.

He profiles several different families in each chapter, which is admirable because it is comprehensive. However, at times it can feel like overkill. I might have preferred three families per chapter rather than seven or eight. The medium isn’t conducive to such a large cast because it’s difficult to keep the characters from blending together if you can’t physically see their faces or hear their voices. I thus found his videos series a source of clarification, not mere supplement.

But Solomon is an exquisite writer. Plenty of ink has already been spilled on the disabilities and social issues he examines, but it’s too often bogged down in language that comes off as dry or downright dreary. It’s not easy to push through 770 pages of the most marginalized lives imaginable, but Solomon’s writing is as poetic as it is sensitive. He is never too meek make assertions and yet, unlike countless journalists, he manages to do so without ever ignoring the agency of those he describes. True empathy never condescends because it transcends fear.

I am, of course, a biased critic. It was 32 years ago this month that my parents got the news that I had dwarfism. And they did everything right – the best any two human beings could when faced with a rare diagnosis that traditionally brought on social isolation. (As Solomon documents, mothers of dwarfs in olden days were often thought to have caused the condition by being lecherous.)

What my parents did perhaps best of all is something all the great parents of the world do – to make me feel so unconditionally loved that I always felt free to discuss with them what might have been done better. Sometimes my critiques are correct and sometimes they’re flat-out wrong. But the freedom to examine what you need to change about yourself in order to be a tolerable person and what you have the right to protect about yourself in order to be a happy person should be a freedom granted to every member of every family. On both sides of the parent/child relationship, or any relationship, “love is made more acute when it requires exertion.”

In a just world, no one should have to be any more grateful to their parents for accepting them than anyone else should have to be. As I’ve written before, caregiving is freakin’ hard, and our gratitude to those who raised us deepens when we consider that, as a whole, they have been more accommodating and respectful of their children than any of their historical predecessors. Solomon points out, “A hundred years ago, children were effectively property, and you could do almost anything to them short of killing them.” But despite how far we have come since then, we have yet to reach an acceptable rate of justice for all.

Solomon points out that 1 in 4 participants in a recent survey said they would choose abortion if their pregnancy tested positive for dwarfism. At least half the children up for adoption in the United States have disabilities of some kind. Crisis in empathy indeed.

Individuals who cannot parent a child profoundly different from themselves should not be forced to. Likewise, society’s hang-ups about difference should not encourage parents to flee from it. Considering the current statistics, Solomon’s book is as necessary as it is beautiful.

Tags: Andrew Solomon, Children, Crime, Disability, Diversity, Intellect, LGBT, mental illness, Parenting, Transgender

Comments 9 Comments
Categories Scars & Appearance, Scars & Class, Scars & Cognitive Ability, Scars & Gender, Scars & Physical Ability, Scars & Psychology, Scars & Sexuality

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

2 Dec

(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?

Tags: Ableism, Beauty Standards, Bio-Ethics, Body Image, Disability, Fashion, Journalism, Lookism, Mariah Serrano, medicine, The New York Post

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Categories Most Read, Scars & Appearance, Scars & Physical Ability

When Food Preferences Surpass Politesse

24 Nov

(Image by Boris Drenec used under Creative Commons license via)

Perhaps not quite in the spirit of Thanksgiving, I’m about to alienate half the people I know: I don’t have much patience for openly picky eaters over the age of 20. The covert ones don’t bother me at all. But announcing to your host that you simply won’t eat mushrooms or mustard or millet is to revert to your 10 year-old self, brazenly acting on the assumption that anyone cooking for you will find your pig-headedness as endearing as your parent or guardian apparently did. I don’t particularly like pears or peas or plenty of other things, but if I learned anything from my time as an exchange student with the American Field Service, it’s that intellectually curious, culturally respectful, fully-grown adults eat whatever is set in front of them. Or at least try a few bites and then leave it to the side without advertising their distaste.

Unless, of course, it threatens their health. I recently hosted a friend who has celiac disease and who apologized several times in advance for the inconvenience. While the sincerity of his remorse was indeed helpful because it was convincing, I assured him there was no need for shame. I’ve had friends with juvenile diabetes and colitis and who need to be fed through tubes. At my wedding, where guests had been requested to bring cakes instead of presents, I chased down every single baker in order to mark any desserts containing traces of peanuts, oranges, or coconut. I never mind offering vegetarian options because they accommodate a wide array of dietary restrictions with both cultural and medical bases, just as alcohol-free beverages are helpful to kids, recovering alcoholics, devout Muslims, and pregnant women alike. But my tolerance generally ends there. Because beyond that boundary seems to be where stubborn intolerance for all sorts of food spreads like the plague.

According to the cover story of Die Zeit this week, less than 1% of Americans are gluten intolerant, yet 28% of Americans purchased gluten-free products last year. The percentage of Germans who purchase lactose-free products has tripled in just five years. Such sky-rocketing numbers sound much more like successful marketing trends than biological shifts in the population. Inordinate media attention to rare medical issues always inspires swathes of people to self-diagnose rather than check with their doctor. In response to what sometimes does seem like an epidemic of hypochondria, a kindergarten in Hamburg has recently taken to demanding medical documentation for any alleged food restrictions among its students. Die Zeit writes that parents were insisting their untested children had food allergies after the appearance of the slightest yucky face. Of course a child at risk for anaphylactic shock is better safe than sorry, but to teach a child to regularly cry wolf is to teach them to rely on their most narrow-minded instincts.

This is not a call to villainize health advocates or burn certain cookbooks. On the contrary, the greatest thing about the human culinary tradition is its diversity. When I grew up in the Eighties on Long Island, skim and lite and sugar-free products were in fashion, but anything organic or “foreign” or “ethnic” was scarce because what’s wrong with some good old American spray-on cheese? Sushi was gross (“It’s raw fish, you know!”), vegetarian dishes were for pansies, and escargot was what made the French so weird in the first place. (See this Indiana Jones clip.) Kids today are growing up more environmentally conscientious and more open to exploring new cultures, and I am glad to see the American tradition of grimacing at all the icky cuisine of the savages and the smelly Europeans go the way of the Twinkie. But there’s no progress in simply switching the grimace from the sight of imported cuisine to the sight of anything that isn’t in line with the latest imported health fad.

While it seems many finicky eaters think their aversion to certain foods resembles a disability (“Please don’t criticize me for something I can’t do!”), it often resembles ableism (“I refuse to budge on this issue!”). We cannot be open-minded and at the same time refuse to leave our comfort zone. As the Food Commander writes in his excellent Huffington Post article, “Unless you suffer from a disease or real (unlike imagined) food allergies, … kindly embrace the fact that your body is not all that fragile. Humans survive every day in conditions way worse than, say, a four-course dinner in an Upper East Side townhouse.”

Outside of a meal, it can be fun to explore cultural differences and personal preferences: why so many Chinese love meat but dislike butter, or why German senior citizens detest turnips. It’s also amusing to try to argue the illogic of taste. (One such argument culminated in one of my relatives bellowing, “I am not a fan of the bean!”) It is also imperative that we eventually discover which food restrictions have been caused by environmental changes and which have been encouraged by marketing trends. But the fun comes to a screeching halt when these discussions ooze onto the dinner table.

Such candidness often has innocent origins. In these rather unrepressed times, where dinner guests discuss everything from politics to polyamory, why not share our honest opinion of what’s on our plates? This approach, however, ignores two very important facts. Firstly, unlike in a restaurant or your own home, the meal laid out for you has been paid for by someone else. Secondly, unlike the selection of films or games or whatever else it is you don’t like about the home you’re in, the meal laid out for you is the result of someone else’s time and effort. To go so far as to scrutinize it (“Is it organic?”) or disparage it (“It’s too bad it has olives in it!”) is to spit on the dinner invitation that was extended to you out of sheer generosity.

I know what it’s like not being able to participate in communal activities. This blog is all about those who have no choice about being an exception to the rule. Those who have bona fide difficulties digesting certain foods—perhaps akin to my difficulty walking long stretches—should not feel ashamed. But shame should not be supplanted with complacency, either. As my friend with celiac disease said, it is usually regrettable to have to limit one’s range of experience, and it is always regrettable when it involves rejecting an offer of kindness.

Indeed, my proudest moment during my bout of stenosis last year was pulling off a Thanksgiving dinner with my partner that fed 17 people while I was still recovering from spinal surgery. If any of this year’s guests cannot stomach something, they will hopefully follow the example of my more gracious friends who keep things discreet, at least at the table. I don’t subject them to judgment by examining their plates for leftovers and threatening to deny them dessert because they spare me the insult of telling me exactly how my offering failed to satisfy them.

They also resist the temptation to dive into an unsolicited monologue of healthier-than-thou moralizing, a tendency that accompanies food more than any other health issue. I’m usually the last to squirm at medical stories, but I’ve been thinking lately that if I have to hear about the details of the latest nutritional research every time I put a spoon to my mouth, maybe I should start lecturing about my back problems every time I see someone wearing heels or sitting at a computer.

Eating is a necessity and a health issue and an environmental issue and a cultural tradition. I love learning from friends and researchers about the different ways we all eat, and the socio-political forces of the food industries are absolutely fascinating. But I won’t ever admire someone merely for eating homemade bread or fine delicacies or simple fare or whatever it is that the Paleo diet currently dictates. Those I do admire cook joyfully in their own homes and, when invited to someone else’s home, plunge their hands obligingly into whatever their host has set out for them, whether it’s okra or Oreos. As minority rights activist Andrew Solomon has pointed out, a truly tolerant culture celebrates additive social models, not subtractive ones.

Or, more simply, I will always care a lot more about your table manners than your diet.

Tags: Allergies, Culture, Diet, Etiquette, Fashion, Food, health, Hosting, Intolerance, society

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Categories Scars & Physical Ability

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.

Tags: Ableism, Achondroplasia, Disability, Diversity Awareness, Dwarf, Dwarfism, Language, Lookism, medicine, society

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Categories Scars & Appearance, Scars & Physical Ability, Scars & Psychology

Equal Treatment Means Special Treatment, Right?

1 Sep

(Via)

Recently overheard in a library: “They just hired some incompetent disabled person. Equality is a nice idea and all, but I can’t turn my whole world upside down in order to always be thinking about what some other person needs. I have to think about my needs.”

To which this disabled person shrugs, “Ditto.”

Tags: Ableism, Disability, Employment, Equal Opportunity, Equality, Human Rights, Special

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Categories Scars & Cognitive Ability, Scars & Physical Ability

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.

Tags: Beauty Standards, Bio-Ethics, Civil Rights, Gender, Gender Identity, German law, Intersex, intersex society of north america, Lookism, medicine, Sex, Surgery

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Categories Scars & Appearance, Scars & Gender, Scars & Physical Ability, Scars & Psychology, Scars & Sexuality

The Parents and the Childfree Are Ignoring A Very Important Group

11 Aug

(Image by gaelx used under Creative Commons license via)

“Now I’m going to ask you something that you officially don’t have to answer, but I’m going to ask you anyway…”

I was in the middle of a job interview, and the résumé splayed out on the table betrayed my age. I knew exactly what was coming.

“Do you have kids?” the interviewer asked.

“No,” I smiled, remembering that German law protected me from having to tell him if and when I ever planned to.

“Good,” he smiled back, glancing to the side as if afraid of being overheard. “Because I hate to say it, but employees with kids will not be able to do this job.”

It was clear to me he wasn’t being sexist or anti-family – just honest. The job in question involved shifts at all hours of the day that would change from week to week. There wasn’t any room for developing a schedule of any regularity, or for excusing oneself repeatedly during flu season. And it wasn’t the only profession I’d heard of that demanded flexibility while offering none back. This year has seen study after study reveal that childless women are heavily favored in academia and the corporate world, while men in any field face miserable stigma if they dare prioritize paternal commitments over professional ones. Parents have it so hard.

But then again, so do childless employees. Yet another study out this year revealed that middle class childless women in the public service sector face stigma and sometimes even harassment in the work place for defying traditional gender expectations. In these jobs, working moms are sometimes accommodated more readily than single ladies, leading Amanda Marcotte to complain at Slate of “women missing dates, exercise classes, and social outings in order to cover for the mothers they work with.” In New York magazine, feminist Ann Friedman argued:

Many corporations now strive for a veneer of family friendliness, so it’s not likely a woman will get the stink-eye for leaving early to catch her kid’s soccer game. Which is a feminist victory. But if a childless employee cops to the fact that she’s ducking out for a yoga class? It’s seen as downright indulgent and may even show up on a performance review.

If you’ve ever waded into the debate between childfree adults and parents, online or off, you know they tend to be rather resentful of one another. I usually find myself playing devil’s advocate to both. At this time last year I wrote about the depths of the pain self-righteous parents can inflict on others. But for every supercilious mother I’ve witnessed flaunting her offspring like Olympic gold medals, I’ve also seen huffy child-freers rolling their eyes the moment a toddler enters their field of vision, having no qualms with letting everyone know that the mere existence of a child in their presence is an assault on their personal freedom. Which brings new meaning to the word “childish.”

It’s a shame because the childfree movement has many excellent points to make about society and gender bias. Summing it all up to the inherent undesirability of children is the worst possible political tactic because no one who believes in human rights can write off an entire group of people who have no choice about belonging to that group. Would we tolerate anyone saying, “I can’t stand the elderly”? Or “There is no way I am ever going to learn to like mentally disabled people”? And anyone who trashes someone else’s reproductive decisions in order to justify their own will never, ever convince the skeptics they need on their side. They’ll just come off as intolerant and judgmental.

And while mothers hit a wall if they insist that theirs is the hardest job in the world, I don’t think we’re going to get very far arguing that employees should have just as much right to leave work early to make it to yoga class as they do to make it to their kid’s soccer game. In the choice between work versus yoga, nothing but my own happiness is riding on the decision. Because it’s me-time. In the choice between work versus my nephew’s soccer game, someone else’s happiness is also at stake. Because it’s caregiving.

This is not to say that single people have less important lives than those with children. Nor do I intend to suggest that parenting is the hardest job in the world. (As mother and feminist Jessica Valenti pointed out in Why Have Kids?, can anyone say with a straight face that being a parent is harder than being a firefighter or an oncologist?) But those who dedicate a large chunk of their time to others in need of care should always be accommodated more readily than those who don’t. Because helping others in need—whether it’s your kids, your parents, your friend’s kids, or anyone you know who is dependent due to age, disability or illness—is work in itself. It’s often a labor of love, but it’s labor nonetheless. And usually it increases your need for me-time, while leaving you with even less time for it.

As a childless woman, I have occasionally been an unpaid caregiver and frequently the one in need of care. I’ve taken time off from work to babysit my neighbors’ toddler, to bring my nephews to the pediatrician, to pick up a friend’s daughter from kindergarten, to help organize a funeral and sort through an estate. And my parents, relatives, husband and friends have taken time off from work in order to take me to physical therapy, to check-ups and procedures, to be at my bedside before and after surgery. The ideal family-friendly workplace would accommodate any employee’s need to help someone in regular need of assistance.

And maybe if we extend the value of good parenting to the value of good caregiving, we’ll be able to have more discussions about how freakin’ hard it can be. Caregiving isn’t just about having a big heart and finding joy in knowing you helped someone. It’s about sacrifice. It’s about reading a book for the fourth time no matter how much you want to throw it out the window. Or rubbing someone’s feet to distract them from the pain no matter how little sleep you’re running on. Or missing out on parties and events no matter how badly you want to go. Or suppressing your gag reflex as the one you love spits up something absolutely gross. Or mustering the strength to decide whether you should endure the anger being vented at you because everyone needs to vent, or whether you should call your loved one out on their self-pity lest their anger become an abusive habit. Caregiving is about testing your patience until it inevitably wears thin and you make a mistake or lash out, ensuring you’ll be up the next several nights wondering whether you just scarred someone for life. Caregiving is work and, regardless of whether it is paid work, it is one of the most psychologically taxing kinds of work there is. And some are naturally better at caregiving than others, regardless of gender.

But why is taking time off for your child’s recital more generous than taking time off for a date with a friend? Isn’t a childless peer just as valuable as a family member? Of course, but let’s not fool ourselves. Sitting through an entire school recital is a lot less fun than fine dining. (Hence the rule at Springfield Elementary: “No leaving after your kid’s part is done.”) And helping a friend through a typical young adult “crisis” like a breakup will never require the same sort of patience, empathy and thick skin that you need for helping someone through serious illness, severe injury, death or divorce. Commiserating, while still noble in its intentions, is simply saying, “I’ve been there!” and swapping sob stories within the boundaries of our comfort zone. Empathizing is forcing ourselves to stretch our imaginations and open our hearts to someone whose experience frustrates us, or maybe even scares us, because it is essentially different from our own experience. Because empathizing is so much harder, it is undeniably more noble.

Young, childless, upper/middle class adults like me will probably always be seen as the most self-indulgent because our stage in life is the least likely to involve illness or dependency. But those who volunteer after work to play with underprivileged children or tutor illiterate adults or regularly call their lonely relatives demonstrate that social segregation is in part a choice.

This is not to guilt everyone into feeling that our lives are meaningless unless we start volunteering. But we should be honest, not touchy, if our lifestyles are in fact more self-centered than others’. This year, unlike years past, I find myself only occasionally dedicating my time to someone else. My husband has been the giver, exerting himself to maintain the work-life balance constantly threatened by the pressures of his job and my medical needs. And for that he deserves accommodation from his employers, and both gratitude and admiration from me.

Tags: Ann Friedman, Breeders, Caregiving, Childfree, Disability, Feminism, Gender Roles, Illness, Parenting, Reproductive Decisions, Volunteering, Work, Work-life balance

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Categories Scars & Class, Scars & Cognitive Ability, Scars & Gender, Scars & Physical Ability, Scars & Psychology

When Saying “I Don’t Judge” Is Judgmental

4 Aug

(Image by Thomas Hawk used under Creative Commons license via)

“I’ve learned not to judge other people.” In the debate on marriage equality, many former opponents have softened their opinions with this all-too-common phrase. While a little progress and diplomacy in any debate is better than none, this should hardly be considered an acceptable assessment of same-sex marriage. Because whenever we say, “I don’t judge,” we’re implying that we think there is something morally ambiguous to judge about the situation.

We say “I don’t judge” when we observe pain or dishonesty and are hard pressed to think of a way it could have been prevented. We say it when we observe someone lose control and we know that everyone loses control sometimes. We say it when at least two sides are sparring and both have made major mistakes. It’s dishonest to pretend that we don’t have opinions about the decisions and actions we witness, because we all do. But ultimately saying, “I don’t judge” means my opinion is incomplete because I can’t say for sure what I would do in that situation. And when the act in question falls short of intentionally cruel behavior, it is often the appropriate thing to say.

It’s appropriate when we hear about a neighbor’s divorce (“I don’t know the details of the marriage, so I can’t judge”), when we hear that someone took a job that compromised their morals (“I can’t say what I would do if I were that strapped for cash”), when we see people with parenting methods that differ from our own (“That child isn’t my child, and I don’t know what I would do if she were”). We say it not to ignore the harm it may have wrought, but in order to remain humble, to avoid hypocrisy, and to remember that different circumstances prevent the human experience from being truly universal.

But we do not and should not say it regarding lifestyles that raise no moral questions. We don’t say, “She’s dating a foreigner, but I don’t judge,” or “They adopted a child, but I don’t judge.” If anyone said of my partner, “He married a woman with dwarfism, but I don’t judge,” that person would be implying there is something shameful or irresponsible about me and my condition.

A little over a hundred years ago, doctors were saying just that. A Virginia medical manual in 1878 advocated criminalizing marriages between average-sized men and women with dwarfism, insisting that such an act was on par with “murder.”

Modern readers hopefully find nothing morally ambiguous about two consenting adults falling in love and deciding to commit to one another. Regarding interracial or same-sex or international or medically “mixed” marriages, the only people who should invite our judgment are those who impugn these relationships with the statement, “I don’t judge.” It’s an oxymoron, not unlike a “Please” slathered sarcasm. And it would be swell to see it less and less in political discussions on civil rights.

Tags: Culture, Don't Judge, Dwarfism, Gossip, Judgment, Language, marriage equality, Marriage Law, Marriage Rights, Meaning, Morality, Morals

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Categories Scars & Appearance, Scars & Class, Scars & Cognitive Ability, Scars & Gender, Scars & Physical Ability, Scars & Psychology, Scars & Race, Ethnicity & Nationality, Scars & Sexuality

“Power for Good”

28 Jul

(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.

Tags: Ableism, Beauty Standards, Classism, Lookism, Media, Minorities, Psychology, Racism, Representation, Stereotypes

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Categories Scars & Appearance, Scars & Class, Scars & Cognitive Ability, Scars & Gender, Scars & Physical Ability, Scars & Psychology, Scars & Race, Ethnicity & Nationality, Scars & Sexuality

Doctor Tries to Be Hip And Misses

21 Jul

(Image by Katie Cowden used under CC license via)

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

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

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

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

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

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

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

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

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

Tags: Achondroplasia, Bio-Ethics, Dr. Timothy Sweo, Dwarfism, Ghetto Booty, Humor, Language, Lordosis, Lower Back Pain, medicine, Race, Racism, science, Sexism, Slang, Spinal Curvature, Terry Ragland

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Categories Scars & Appearance, Scars & Cognitive Ability, Scars & Gender, Scars & Physical Ability, Scars & Race, Ethnicity & Nationality, Scars & Sexuality

Sex with Circus Midgets or Uncomfortable Silence

7 Jul

(Via)

“Pregnant mothers should avoid thinking of ugly people, or those marked by any deformity or disease; avoid injury, fright and disease of any kind.” So advised doctors in the 1920 parenting manual Searchlights on Health. Eugenics was all the rage back then, but it had hardly come out of nowhere. The ugly laws of the 19^th and early 20^th centuries prohibited, for example in Chicago, “Any person who is diseased, maimed, mutilated, or in any way deformed, so as to be an unsightly or disgusting object, or an improper person to be allowed in or on the streets, highways, thoroughfares, or public places.”

Under these laws, poor and homeless people with disabilities suffered the most. The class system gave those from affluent families, like Helen Keller, a better shot at being exempted. But before the disability rights movements of the 1970s, countless disabled children were abandoned by their families in orphanages and asylums, and were thus condemned to grow up to either join the circus or become the vagrants these laws targeted. Abandonment, rejection and the resulting invisibility in society is an ableist tradition of astounding resilience. Because just how far have we come in the past hundred years since doctors and municipalities advised not talking about or looking at disabled people?

This week Slate magazine features two articles by Barry Friedman and Dahlia Lithwick, asking readers to consider “what is left for the progressive movement after the gay rights victory at the Supreme Court.” Arguing that liberal activists have developed tunnel vision, focusing almost exclusively on gay marriage and nothing else, they trumpet issues that deserve attention along with marriage equality. Their list spans two articles, covering all sorts of social causes, from ending the death penalty to protecting the environment to improving child-care funding and education to marijuana legalization. Nowhere in either article do they mention disability rights.

This very same week Slate also kicked off a blog about Florida by Craig Pittman with an opening article called, “True Facts About the Weirdest, Wildest, Most Fascinating State.” Among the facts that apparently render the Sunshine State weird are the python-fighting alligators and “a town founded by a troupe of Russian circus midgets whose bus broke down.” On the day of its release, Slate ran the article as its headline and emblazoned “A Town Founded By Russian Circus Midgets” across its front page as a teaser.

Face-palm.

Friedman and Lithwick have nothing in common with Pittman except that they also write for Slate, a news site written by and for young liberals. And that their articles remind me of what I’ve come to know and call Young Liberal Ableism.

That is, there are two ableist mentalities not uncommon among young liberals:

1) Uncomfortable Silence: the tendency to skirt issues of disability, especially compared to other social issues, because disability threatens two things young liberals unabashedly embrace – being independent and attractive. (“Independent” and “attractive” rigidly defined, of course.)

2) Sex with Circus Midgets: the sick fascination with physical oddities that objectifies and/or fetishizes people with atypical bodies or conditions. (I’ve discussed this in detail here.)

Both mentalities see any disabled people they hurt as acceptable collateral damage.

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

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

For a little more than a decade, I’ve lived on one of America’s most liberal college campuses and then in one of the world’s most progressive cities. I have never met so many liberal people at any other time in my life and I have never met so many ableist people at any other time in my life.

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

In 2009, when the pretty darn liberal Huffington Post reported on Little People of America’s call on the FCC to ban the word “midget,” the majority of commenters snidely remarked, “At least they can get married.” There was truth to this, but I found it telling that not a single commenter on the left-wing blog considered that the word “midget” could be hurtful. Everyone instead decided to play Oppression Olympics.

Understand that I will never say that among liberals disabled people are worse off than other minorities or that ableism is the “last frontier” in human rights. It’s not. Even if I believed it to be true, it would be impossible to prove and fighting for the crown of Superlative Suffering doesn’t do anything but imply that there are those against whom you wish to compete. I don’t want to compete with anyone.

Nor do I assume that anyone who uses the word “midget” is bigoted. Many who use antiquated terms are honestly unaware of their potential to hurt. (It wasn’t until two years ago that I learned that referring to the Sami-speaking regions as “Lapland” can be very offensive to those who live there.) And there is no minority on earth whose members agree unanimously on a name. “Little people” makes me cringe almost as much as “midgets,” while my husband winces whenever I use the German word for “dwarf.” Labels are only half as important as the intentions behind them.

But when young liberals insist that no one can be expected to know that “midget” is hurtful, there is something particularly perverse about hearing dehumanizing beliefs and ideas come from the mouths of those who pride themselves on their open-mindedness and diversity awareness. Or whose own experience of marginalization would logically render them a better candidate for empathy. In the words of Charles Negy, bigotry is an unwillingness to question our prejudices.

Why do I call it Young Liberal Ableism and not just Young Ableism? Because certain liberals could learn a thing or two from certain conservatives about facing disability and illness. Consider the stereotype of the small-town conservative who proselytizes about etiquette and tradition, and goes into a tizzy over the idea of two men kissing or a woman not taking her husband’s name or her neighbors speaking another language or a singer using swear words. But for all the types of people she does not want to accept in her community, she is fiercely dedicated to her community. She spends a good deal of her time going to church and checking in on her neighbors, and stays in contact with those who are physically dependent, sick or disabled. As patronizing as charity can be, many young conservatives have been raised to send get-well cards, bake pies, and call on neighbors and relatives who are stuck at home or in the hospital. They’ve been raised to believe that it’s the right thing to do.

Many young liberals, meanwhile, have been raised to analyze their problems and personalities to the point of vanity, question moral traditions to the point of moral relativism, and feel free to do what they want to the point of only doing what they want. They believe that anyone is welcome to live in their town, but they’ll only socialize with those they deem interesting.

I’m stereotyping of course. But it’s a fact, not a stereotype, that in the U.S. liberals are less likely to donate to charity, less likely to do volunteer work, and less likely to donate blood than conservatives.

Ultimately, it does not matter whether you call yourself “liberal” or “conservative,” left-wing or right-wing. There are Ayn Rand conservatives who insist that compassion is “evil,” and there are liberals who work tirelessly in low-paying jobs at non-profits and social agencies that do as much good as any charity. There are those of all political stripes who make large charitable donations but also want everyone to know about it, and there are those who don’t know the first thing about politics but know everything about empathy. We are far more complex than our politics give us credit for.

The goal should be to never become too self-congratulatory about our politics or morals, as Friedman and Lithwick warn. But in response to their call for issues progressives specifically need to pay to attention to, I do have a wish list going:

How about young liberals fighting to make sure dwarf-tossing is banned around the world?

How about facts instead of factoids when it comes to communities founded by dwarf entertainers who have been socially isolated by ableism and fear life-long unemployment?

How about young liberals continuing to fight for the U.S. to ratify the U.N. Convention on the Rights of Persons with Disabilities?

How about young liberals debating the Supreme Court’s 9-0 ruling last year that religious organizations are exempt from the Americans with Disabilities Act?

How about young liberals talking more about the astronomical rates of violence against intellectually disabled people, rather than just sneering at Sarah Palin’s complaints about the word “retard”?

How about young liberal bloggers trying to understand physical disability and illness as often as they try to understand depression and social anxiety?

How about our seeing a lot more women with dwarfism starring in romantic comedies than in porn movies?

How about more young liberal discussions about real dwarfs than Tolkien Dwarves?

In issuing these demands, I’m of course terrified of appearing too self-interested. Politics is all about trying to square the selfishness of What about ME?! with the fairness of Everybody matters. Sometimes sticking up for your own rights is easier than sticking up for someone else’s. Sometimes it’s the other way around. All of us, liberals and conservatives, should value trying to do what is right rather than what is easy.

Tags: Ableism, circus freak, Conservative, Disability, Dwarfism, Dwarfs, Intersectionality, Liberal, Midget, Minority Rights, Sick Fascination, Slate, Ugly Laws

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Categories Most Read, Scars & Appearance, Scars & Cognitive Ability, Scars & Physical Ability, Scars & Sexuality

Liberty and Justice For All

30 Jun

(Via)

The Defense of Marriage Act and Proposition 8 are dead. Less than nine years ago on Election Night 2004, when eleven states banned gay marriage in one fell swoop, I would never, ever have dared to think that change could come so rapidly. Of course, marriage equality does not yet exist in thirty-seven of the fifty United States, but with young people around the world overwhelmingly and increasingly showing their support, it is coming. Thank goodness, in the best sense of the word.

There are those—gay, straight, bi and queer—who are saying, “I can’t be happy about this after what happened to the Voting Rights Act this week.”

And, “I can’t be happy about this until full equality is granted to trans citizens.”

And, “I can’t be happy about this until the AIDS crisis gets more attention.”

And, “I can’t be happy about this until we realize that single people deserve federal benefits, too.”

And every one of these people has a valid point. It’s a common political strategy in such triumphant moments to grab the opportunity to shed light on other civil rights abuses while you have everyone’s attention. Drawing attention to other injustices—especially the attention of those whose privileges put them at risk for remaining oblivious to such issues—is crucial because no one is free when others are oppressed. This is why I am always willing to discuss the latter half of any of the above statements.

But I do take issue with the first half: the too-cynical-to-celebrate attitude that is begging to be called out for its hipster glass house. Because marriage equality is a victory for everyone.

Anyone familiar with the history of minority rights in the U.S. knows that granting civil rights for one group has had an undeniable domino effect on other groups. Not long after debates about slavery, segregation, and voting rights culminated with the nation’s belief that all men are indeed created equal, women asked, “Why just men?” And not long after so many women proved that straight relationships can be egalitarian, gay and lesbian citizens asked, “Why just straight ones?” And somewhere amid gays and lesbians proving that the way they were born hurts no one, trans people asked, “What about how we were born?” And somewhere in between all the discussions about genitals and bodies and skin color and size, disabled people asked, “What about our bodies and brains?” Because no one is free when others are oppressed.

Likewise, when one kind of inhumane prejudice gets knocked down, all the others are under threat.

This is not to take attention away from the people most directly affected by this week’s momentous legal decision. Friends of mine in Massachusetts can suddenly enjoy concrete federal benefits now while my husband and I have always enjoyed these benefits simply because we’re in a straight relationship. I am so happy for them, and so sad one of my dearest friends never lived to see this day.

But the victory is truly for everyone – even those marriage equality opponents who fail to see how they will benefit from a society that is a little bit freer, a little less fearful, and lot less lop-sided. Because this is a victory for anyone who has been bullied for traits they never had any choice about. This is a victory for anyone with something that has made them stand out in their family. This is a victory for all the couples who have choked back tears when someone said that marriage is all about a man and a woman being able to procreate. This is a victory for all the parents who have tried to teach their children to never grow up thinking they are more important than anyone else.

Congratulations to all of you out there.

Tags: Civil Rights, DOMA, Human Rights, Intersectionality, marriage equality, Minority Rights, Proposition 8, SCOTUS

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Categories Scars & Appearance, Scars & Class, Scars & Cognitive Ability, Scars & Gender, Scars & Physical Ability, Scars & Psychology, Scars & Sexuality

What To Do When I Go FWOMP!

23 Jun

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Tags: Achondroplasia, Beauty Standards, Body Image, Disability, Dwarfism, Etiquette, Limb-Lengthening, Support

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Categories Scars & Physical Ability

Define “Active”

16 Jun

(Via)

New York City has begun using a new design of the international symbol for disabilities this week. (See above.) Featuring a forward-moving, self-propelling wheelchair user, the new symbol has garnered praise from the mayor’s office and Professor Lisa Wade of Occidental College for portraying disabled people as “active and independent,” instead of “passive and helpless.”

I support the move 99% because it signifies the changing perceptions of what it means to be disabled. Altering our default descriptions of non-ambulatory people from “wheelchair-bound” to “using a wheelchair” sheds much-needed light on the fact that many disabled people are indeed differently abled. Wheelchairs, sign language, and Braille are not just substitute ways of moving and communicating but means of moving and communicating that require skill. If you’ve ever witnessed someone try to use a wheelchair for the first time, you know it’s like watching Bambi on ice.

That said, I am hesitant to embrace any idea that insists that physically “active” is preferable to “passive” at the risk of impugning those who cannot help but be dependent. Just as Little People of America’s motto “Think Big!” inadvertently suggests something undesirable about being small, an over-emphasis on being active—and defining “active” as the ability to physically move yourself forward—inadvertently suggests something humiliating about the thousands of medical conditions that preclude physical independence. All people have agency, and this absolutely bears repeating when we talk about human rights and portrayals of disability. But not all of us are independent.

Disability reminds us, perhaps like nothing else, that we can never hold every member of the human race to the same standard. This does not mean we cannot demand everyone strive for excellence, try their hardest, or be their own toughest critic. But it does mean we should be wary of promulgating rigid definitions of excellence.

As a friend with lupus once said, “What’s wrong with being weak? What’s wrong with trying to do something and doing it badly?”

Competitive cultures wince at weakness and I must say that America can be a very competitive place. Even the most progressive human rights movements have embraced competitive, grandiose language when talking about empowerment. Two years ago on Love Your Body Day, Chloe Angyal of Feministing wrote an article wherein she wanted to “ take a moment to appreciate the things my body can do.” She went on to list her favorite things:

My body can stitch itself back together when it gets cut. This never ceases to amaze me.

My body has an organ in it that can stretch to accommodate a small human being. I don’t want it to do any stretching or accommodating any time soon, but the capacity is there, and that blows my mind.

More than a decade after it was cool (was it really ever cool?) my body still has the muscle memory to do the Macarena. That one is kind of embarrassing, but still kind of great. Mostly embarrassing.

My body can orgasm. Enough said.

My body can do [a flip], and for that, I love it.

What can your body do?

I had been, and still am, a huge fan of Angyal’s writing. As a feminist, an athlete and someone who has struggled with disordered eating, her contributions to the discourse on body image have been invaluable. But this time around, I wasn’t inspired to join in her Love Your Body Day exercise. I hesitated to say so because I understood the noble intentions behind her article, and what kind of person wants to rain on a Love Your Body Day parade?

Apparently someone like me, because I ultimately couldn’t help but write this response:

I realize the very good intentions of your post: celebrating our bodies as they are. But the emphasis on what you can “do” (= ability) still made me quite uncomfortable as someone with disabilities.

Usually when one writes a piece meant to buck oppressive, judgmental thinking and celebrate the way we are, the author writes about a quality that is ostracized – a skin color, sexuality, a body size, physical features considered to be deformities, etc. It’s the honesty of the author in spite of adversity that inspires. You instead decided to celebrate things about your body that mainstream society does not ostracize at all, but in fact agrees with you are wonderful. So for those of us who cannot dance, have children, heal cuts, or do gymnastics, this post simply reminds us of this and it’s hard not to take it as bragging. (I know that wasn’t your intention.) You did invite us to list our own things we love about our bodies, but I don’t think there’s anything my body can do that yours can’t…

Angyal wrote back to me personally and apologized. From there we started a dialogue that resulted in my writing guest posts for Feministing and our exchanging lots of praise for each other’s work. I had been frustrated by the lack of disability awareness on leftist forums and simultaneoulsy self-conscious of appearing too negative or narcissistic. This made her response to my critique all the more inspiring. She has both privileges and experiences of marginalization that I do not, just as I have privileges and experiences of marginalization that she does not. The same goes for those who can move their own wheelchairs and those who cannot.

Overlooking our privileges and inadvertently denigrating others happens all too easily, as all 7 billion of us strive for excellence and recognition of our various capacities for excellence. Trying to include everyone in the conversation, all the time, can be exhausting. But admitting the danger of these missteps is imperative to the idea of truly universal human rights because that idea insists, over and over again, no matter what the circumstances, that everybody matters. There is no way around it if we want to move forward.

Tags: Disability, Disability Rights, Disability Symbol, Human Rights, Language

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Categories Scars & Physical Ability

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.

Tags: Body Image, Cis, Gender, Human Rights, Lookism, Right to Privacy, Sexuality, Social Justice, Trans, Transgender, Transphobia, Transsexual, Xenophobia

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Categories Most Read, Scars & Appearance, Scars & Gender, Scars & Physical Ability, Scars & Psychology, Scars & Race, Ethnicity & Nationality, Scars & Sexuality

Who Gets Stuck in the Friend Zone

24 Mar

(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 and her extraordinarily open mind 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 annoying. Really 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 reveal a real-life physical disability and see her hot lover swoon.

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.

Tags: Ableism, Asexual, Bad Boy, Beauty Standards, Books, Disability, Dwarfism, Film, Gender Roles, Lookism, Romance, Sexuality, The Friend Zone

Comments 6 Comments
Categories Scars & Appearance, Scars & Class, Scars & Cognitive Ability, Scars & Gender, Scars & Physical Ability, Scars & Psychology, Scars & Sexuality

Does This Feel Ableist To You?

10 Mar

(Via)

This London mural of Game of Thrones star Peter Dinklage has been around for a while. Dinklage’s success and visibility has generally been great for the dwarf community. Most of this is thanks to professional decisions made by Dinklage himself. He suavely excoriated dwarf-tossing last year when accepting his Golden Globe. He starred in the only good film about a character living with dwarfism in the real world. And his famous “I don’t have dreams with dwarfs in them!” rant continues to provide me with a perfect answer to those who still snicker about midgets on Facebook. But now that Game of Thrones has helped propel him into the mainstream, not all the attention given to his dwarfism is good.

Fantasy traditionally exiles men with dwarfism to the Friend Zone and Game of Thrones has finally taken a hammer to that. But it doesn’t feel like progress when shallow discussions of Dinklage’s sexiness treat him like a novelty. (And invariably trigger jokes and a sick fascination with the effect of height on certain sex positions.) In her superb list, “Things to Keep in Mind When You Come Across a Person with Dwarfism,” the girlfriend of a dwarf writes on Tumblr:

Don’t go out of your way, if they’re male, to affirm their masculinity by attempting to ‘bro down’ by gratuitously using words like ‘boss,’ ‘man,’ ‘sport,’ ‘champ,’ etc. in your interactions with them. It makes it obvious that you’re uncomfortable with their difference & are attempting to overcompensate.

Her complete list is definitely worth your time. (And oh man, do I remember the high-fives… ) But I’m not going to decide just yet whether the above mural embodies the patronizing attitude she describes. I want to hear what you think:

Feel free to explain your answer in the comments.

Tags: Ableism, Beauty Standards, Dwarfism, Game of Thrones, Peter Dinklage, Sex, Sick Fascination, Tyrion Lannister

Comments 5 Comments
Categories Scars & Appearance, Scars & Physical Ability, Scars & Sexuality

Wheelchair Problems

24 Feb

(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:

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.

Tags: Ableism, Disability, Disabled Access, Diversity Awareness, Lookism, Social Justice, Wheelchair Problems

Comments 2 Comments
Categories Scars & Appearance, Scars & Physical Ability

The People You Meet When You Talk About Human Suffering

17 Feb

(Image by Boinink used under CC license via)

Not all disabled people are innocents. I would hope this comes as no surprise. But in the wake of Oscar Pistorius’s alleged murder of his girlfriend, some are going to the other extreme. In a bizarre article titled “The Disability Pedestal,” Slate writer William Saletan lists various disabled people who have allegedly committed similarly heinous crimes. He cites anger over their disability as a frequent motive. Which evokes the stereotype of the evil freak who kills in order to compensate. That stereotype is at least as old as wicked witches, and as modern as the albino villain of The DaVinci Code. Do we really need to feed it?

And if there is truth to the commonly held belief that disability renders people more likely to lash out at others, then shouldn’t we be investing in a solution? Saletan doesn’t offer any statistics on how many disabled people commit crimes out of self-pity, but if it’s really so endemic, then we should do something about it.

But I don’t think that’s what he meant. While never going so far as to declare disabled killers a social problem, Saletan does argue that some see their disability as “just another card they can play,” and that both they and we need to realize that it all comes down to individual responsibility:

Equality isn’t about being special. It’s about being ordinary. People with disabilities aren’t above sin or crime. They’re just like the rest of us… You run your own race. You make your own decisions. Most people with prosthetic legs don’t shoot their lovers. Most guys who survive testicular cancer don’t run doping rings in the Tour de France. Something about beating cancer or overcoming a birth defect tugs at our hearts. It paralyzes our judgment. We don’t want to believe that people who have accomplished such things can do evil. Most don’t. But some do.

I know plenty of disabled people who are jerks and nothing about the Pistorius case compels me to think of him as anything but one. The stereotype of the poor, innocent, helpless, asexual, naïve invalid needs to go. Yet I’m not comfortable with Saletan’s rather Ayn Randian assertion that compassion impairs judgment. What impairs judgment is an inability to see someone as more than just a disability. We should all be smart enough, deep enough, big enough to be humbled by the extraordinary difficulties someone has endured and to simultaneously call out their faults—or crimes—for what they are.

Having a disability does not automatically make you a brave person or a good person or someone who deserves to be liked. But disabilities almost invariably cause pain, and equality should not aim to rid us of our impulses toward compassion. Was my judgment “paralyzed” when I met a girl in the hospital whose body was hot-pink with third-degree burns and immediately thought, “Man, I shouldn’t whine so much”? Lots of my fellow patients at the hospital turned out to be the sort of people I couldn’t stand. But almost every one of them had had experiences I could only try to imagine. Refusing to excuse a disabled person should not preclude trying to understand the privileges we enjoy that they do not.

To be fair to Saletan, I must admit it’s strange to find myself arguing this way because I am often fed up with discussions of disability and psychiatric disorders that devolve into self-pity and melodrama. (See Twitter, Tumblr, Facebook… ) But firing off judgment can lead to snap judgments, and focusing our political energy on ranting about the whiners can lead to a cynical, soulless view of humanity.

It just goes to show that we still have a hard time as a society figuring out what exactly to do with human suffering. In my experience, four personality types exacerbate this problem. (I’ve assigned gender randomly):

Mr. Comfort Zone – “I’ve Suffered, But You Don’t See Me Complaining!” That guy who only sees society through his own lens. He refuses to recognize any privileges he may enjoy, insists that everything balances out in the end and/or that the system is really rigged against people like him thanks to our oppressive PC culture. He has a point that self-pity is counterproductive, but his refusal to acknowledge that anyone could have it harder than he does is the epitome of selfishness. His refusal to explore the possibility of institutionalized chauvinism is intellectually lazy. And his campaign for self-reliance loses all credibility the moment he blames minorities for his hardships.

Ms. No Time For It – “It’s Sad Others Suffer, But I Don’t Like to Think About It…” That lady who avoids political or social issues like the plague. She wants to “stay positive” and “talk about cheerful things,” like the weather and her favorite TV shows and recent purchases. She has a point that complaining too much about the world’s problems can wear you down, but she often contradicts this by complaining about mundane problems, like those trashy people who live around the corner and that snobby celebrity who had affairs with three different men, all of them friends of her husband, can you imagine how nasty you’d have to be in order to do such a thing? In refusing to discuss politics, she ignores how much of her world view is determined by politics; i.e., what is considered “beautiful,” what it is considered “normal,” what is “controversial.” She doesn’t realize that her ability to avoid certain “political” issues is a privilege.

Mr. Oppression Olympics – “My People Have Suffered the Most!” The activist who thinks the only rights worth fighting for are his own. He may have a point about the unique nature of the discrimination he’s faced, but he ludicrously believes the more you’ve suffered, the more justice you deserve. He secretly harbors prejudices about other minorities and this might be revealed when he thinks one of them might be taking time, funding, or attention away from “his” group. He also refuses to acknowledge any privileges he may have.

Ms. Cry Wolf – “Can I Get Attention for My Suffering?” The whimpering waif who takes the phrase “Talk about your feelings” to the extreme, turning almost every political discussion into a personal therapy session. She secretly, or perhaps subconsciously, thinks belonging to a minority is enviable because it grants you sympathy and excuses for why you can’t do something. She has a point that repression can be dangerous, but she goes overboard by crying, “OPPRESSION!” at any call for modesty or good manners. She lists her problems in order to attain solace and praise, rather than revelation.

We’re all prone to feel like these people in certain situations. As a teen, I often slipped into Ms. Cry Wolf around boys I liked, hoping my saying, “I’m having such a hard day I could just cry!” would get them to be exactly as kind to me as I desired. During my limb-lengthening procedures, when girlfriends would moan about not being thin enough while I was struggling against my painkillers to keep food down, I felt like Mr. Comfort Zone, wanting to tell them to shut up and be grateful. In college, I felt like Mr. Oppression Olympics when students would raise their fists for feminism and LGBT rights but squirm and change the subject if I brought up disability rights. And when it comes to certain matters of injustice—like what’s been going on in the Congo for the past five, ten, fifteen years?—I continue to be Ms. No Time For It, clicking past the headlines to the latest news about Stephen Fry or Jack White.

Most people I know have had these feelings at certain points. But we should be wary of acting on any of them, especially in the political sphere, because they’re all counter-productive. There’s no progress in self-pity. There’s no progress without empathy. As I blog about disability and disenfranchisement, I agree with Saletan that I should never, ever be comfortable with the idea of myself as a victim. But I also never want to be so hardened that I can’t be moved by human suffering. Because that’s not really the point of trying to get along with the rest of the world, is it?

Note: This post was inspired by Crommunist’s The People You Meet When You Write About Race

Tags: Ableism, Compassion, Disability, Individual Responsibility, Oppression Olympics, Oscar Pistorius, politics, Self-Pity, Social Justice, Stereotypes, William Saletan

Comments 3 Comments
Categories Most Read, Scars & Cognitive Ability, Scars & Physical Ability, Scars & Psychology

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