Tag Archives: Limb-Lengthening

Body Dysmorphia & the Dangers of Operating Out of Insecurity

29 Nov

Reid reading(Image by Miguel Tejada-Flores used under CC 2.0 via)
 
At the beginning of Mean Girls, Lindsay Lohan’s character watches her new high school friends indulge in body-bashing in front of a bedroom mirror:

“God, my hips are huge!”

“Oh, please. I hate my calves!”

“At least you guys can wear halters. I’ve got man-shoulders.”

“My hairline is so weird.”

“My pores are huge!”

“I used to think there was just fat and skinny,” Lohan thinks to herself. “Apparently there’s a lot of things that can be wrong with your body,”

While most women in the Western world are well-acquainted with this mentality, such self-hatred also occurs in men, albeit more covertly. Body dysmorphic disorder affects between 1% to 2% of the population and is distributed equally among men and women. And if they have the means to pursue cosmetic surgery, they can become addicted to it.

In an article appearing at The Huffington Post last week, 27-year-old Reid Ewing (pictured above), who plays a run-of-the-mill hunk on Modern Family, revealed his seven-year struggle with body dysmorphic disorder and his subsequent addiction to cosmetic surgery. After describing in detail his self-hatred in front of the mirror and his misery after each of the several surgeries, he turns his lens to the doctors who were only too ready to put him under the knife:

Of the four doctors who worked on me, not one had mental health screenings in place for their patients, except for asking if I had a history of depression, which I said I did, and that was that. My history with eating disorders and the cases of obsessive compulsive disorder in my family never came up. None of the doctors suggested I consult a psychologist for what was clearly a psychological issue rather than a cosmetic one or warn me about the potential for addiction.

People with body dysmorphic disorder often become addicted to cosmetic surgery. Gambling with your looks, paired with all the pain meds doctors load you up on, make it a highly addictive experience. It’s a problem that is rarely taken seriously because of the public shaming of those who have had work done. The secrecy that surrounds cosmetic surgery keeps the unethical work practiced by many of these doctors from ever coming to light. I think people often choose cosmetic surgery in order to be accepted, but it usually leaves them feeling even more like an outsider. We don’t hear enough stories about cosmetic surgery from this perspective.

Not long after I had decided to stop getting surgeries, I saw the first doctor I met with on a talk show and then in a magazine article, giving tips on getting cosmetic surgery. Well, this is written to counter his influence. Before seeking to change your face, you should question whether it is your mind that needs fixing.

Plastic surgery is not always a bad thing. It often helps people who actually need it for serious cases, but it’s a horrible hobby, and it will eat away at you until you have lost all self-esteem and joy. I wish I could go back and undo all the surgeries. Now I can see that I was fine to begin with and didn’t need the surgeries after all.

I have written extensively about my decision to undergo six years of limb-lengthening. In the many, many conversations I have had with people in person, on panels and in print about this decision, I have emphasized that it was not for cosmetic purposes and that anyone who would do it to counteract feelings of bodily inferiority should refrain. Ewing’s stories of screaming at his scars and feeling anything but satisfied with himself are precisely why.

And for the majority of people who are not at risk for such all-encompassing self-destruction, it is still worth asking ourselves as a culture if the aforementioned tradition of bonding through body-bashing brings us any self-esteem or joy.

 

 

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Curiosity Kills the Rat

19 Oct

From the Archives

 

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

— Michael Franti

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

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

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

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

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

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

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

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

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

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

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

 

 

Originally posted May 19, 2012

And the Name of the Drug That Might End Dwarfism Is Vosoritide

28 Jun

Medicine 3(Image by Marosh used under CC license via)

 

Pharmaceuticals company BioMarin announced last week the first results of their clinical trials for the drug BMN-111, now named vosoritide by the World Health Organization. Researchers have been developing vosoritide in hopes of one day curing achondroplasia, the most common type of dwarfism. Vice-President Dr. Wolfgang Dummer reported:

In children receiving the highest dose of 15 micrograms per kilogram daily, we observed a 50% increase in mean annualized growth velocity compared to their own natural history control growth velocity. This increase in growth velocity, if maintained, could allow children with achondroplasia to resume a normalized growth rate. More importantly, vosoritide was well tolerated in all dose cohorts and we have observed no major safety concerns to date.

Whether or not vosoritide could reduce an achondroplastic person’s increased risk for chronic joint pain, bowed legs, spinal stenosis, sleep apnea, or hydrocephalus remains to be seen.

Since many of my readers are new to the blog, I’m re-posting my article “Will We Live to See the End of Dwarfism?” about how some of us with achondroplasia feel about all of this.

* * *

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

Interview on Berlin Television

6 Jun

©Ines Barwig(Image ©Ines Barwig)

 

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

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

 

GoogleTranslate

 
 

What Makes A Cast Look Cool?

23 Feb

LegsOrthopedic casts haven’t changed much in 50 years, until now. Engineering student Jake Evill of New Zealand has designed the Cortex cast, a brace made from 3-D printing. While all casts could effectively be described as exoskeletons, the Cortex looks like one. Its lattice structure allows for ventilation, which Evill advertises as its greatest asset. The Cortex is still at its conceptual stage, but, as with almost all new technology, reviews in the media have been pulsing with excitement.

The problems of plaster and fiberglass casts are well known to anyone who’s had to wear one. They’re fairly heavy and very bulky. Worst of all, they make your skin itch like the dickens and you are forbidden from using any implements to scratch because the smallest cut can become badly infected in the dark, suffocating conditions damp with sweat and dead skin. I had to wear casts on both legs after two tendon surgeries and once after having Ilizarov fixators removed. The itching alone was bad enough to make me wish I had the fixators back on.

Anything that claims to be lighter and breathable is a very attractive proposition. But while the Cortex website boasts that the cast is waterproof and therefore perfect for bathing and swimming, this probably means that there is no cloth involved. The cloth lining between a traditional cast and your skin contributes to the itching, but it’s there to prevent abrasion. Watchmakers, jewelers and BDSM professionals all know that any material other than cloth or leather can pose serious risks to human skin.

And the claims that the innovative appearance of the new cast is stylish? What exactly makes a cast stylish? While I could see goths maybe being partial to the Cortex if they could order it in black, reviewers seem to be fawning over the look of it simply because it’s new. And the promotional photo for the Cortex features a well-toned, scarless, unbruised arm that looks a bit too healthy to contain a broken bone.  (I half-expect the owner of the model’s fist to be shouting, “BY THE POWER OF CORTEX!”) 

Style is all about what you do with what you’ve got.  Fiberglass casts come in assorted colors. I had hot pink ones while performing in a school play and ended up enhancing one dream-like scene lit only by ultra-violet light. When I had neon green casts, friends painted my toenails to match. And the good old tradition of letting your loved ones cover your limbs in graffiti is worth mentioning. A friend who is a professional painter adorned the bottoms of my feet with elaborate sunflowers.

Then again, some casts do not conceal only injuries. A young friend of mine once stuck a chunk of steak down her cast in order to get out of having to eat it before dessert. She managed to retrieve only part of it after dinner – the rest tore away and remained lodged deep in the plaster caverns enveloping her arm. Her parents remained unaware for days until the entire house began to reek of rancid meat. With the new cast design, families with deceptive children need not fear such hazards.  The Cortex offers not only porousness but transparency!

 

 

What To Do When I Go FWOMP!

23 Jun

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

 

Who You Telling To Wear Makeup?

28 Apr

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

 

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

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

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

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

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

Captain Jack Sparrow

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

Jason Straatmann Actor Japan Suit Tie Cufflinks Model

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

Untitled

People find beauty in this:

Traditional Korean dance

Or this:

Ethiopia, Mursi woman

Or this:

Bollenhut-Gutach

Or this:

4601942293_27f40e0122_o

Or this:

Namibië, oktober 2008

Or this:

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

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

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

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

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

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

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

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

As psychologist Nancy Etcoff wrote in The Times:

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

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

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

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

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

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

 

 

Happy Halloween

24 Oct

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

CURIOSITY KILLS THE RAT

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

— Michael Franti

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

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

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

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

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

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

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

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

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

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

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

 

 

Body Image Part IV: My Choice and Your Choice Entwined

24 Jun

Copyright Folke Lehr(Image ©Folke Lehr)

 

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

 ***

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

Body Image Part III: Mirror Etiquette

17 Jun

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

 

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

 ***

Two moments in the Wonderful World of Body Image:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Two moments in the Wonderful World of Healthy Relationships:

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

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

 

 

Body Image Part II: The Rules for Snark

10 Jun

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

 

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

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

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

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

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

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

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

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

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

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

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

 

 

Body Image Part I: The Ick Factor of Certain Bodies

2 Jun

Contemporary pair(Image by Luca Rossato used under CC via)

 

“Did you do it to function better or to look normal?” 

This is Number One question about limb-lengthening for people with dwarfism, and it opens the Pandora’s box of Body Image, a topic that, no matter who you are, lends itself to resolution no more easily than does Religion.  But as I begin a series on the depths of our own feelings about our bodies, I want to first tackle the biggest influence of our self-worth: i.e., others’ opinion.  After all, if we were fully convinced that no one else cared one bit what we looked like, how much would we care?

The answer to that may not be easy, but the Number One reason why any of us care what others think about our looks certainly is.  It’s all about Dating.  Getting laid.  Finding a mate.  Every parent of a child with dwarfism is warned at Little People of America meetings that whatever ostracizing goes on in elementary school will be outdone by the perils of puberty.  The mainstream often dismisses this as an unfortunately natural stage of development, but people designated as minorities by the mainstream know that it is merely an introduction to what lies beyond adolescence.  Too often the adult world dodges any responsibility it bears for the lookism young people embrace. 

Whether following conventional or unconventional beauty standards, adults obsess over unattractiveness.  We are simply less blunt than teenagers, but therein all the more insidious, disguising our trashing of others as the (pseudo-)philosophy of having a “type”:  

I just need a really well-built man.  I can’t get into skinny guys.” 

I mean, I don’t want to be taller than my man.  No one does.” 

I’d honestly be grossed out if I found out my date was transsexual.

I do not like hairy bodies.” 

Whatever.  We all do it, but we do it way too much.  Most of us can see patterns to our attractions, but the more we talk about it, the more we cultivate it in our minds, convincing ourselves that it’s what we need in order to be turned on.  Which at best really does nothing—does it really help to weed out people in a crowd based on their bodies before we even talk to them?  is there some efficiency to dating that you get points for?—and at worse, limits our experiences and nurtures the dangerous misconception that beauty standards are immovable objects. 

A coworker of mine once claimed, “I’m not racist, but I’m just not attracted to black girls.”  Dude.  Forgetting for a moment that starting any sentence with “I’m not a racist, but—” is possibly one of the least convincing ways to exonerate yourself, are you sure of this because you’ve never been attracted to black girls before?  By that logic, I’m just not attracted to Slovakian guys.  Or Sri Lankan guys.  Or Cornish guys.  Or Oklahoman guys.  Or… wait a minute, this could go on for a while.  Even if you are set in your ways and for some reason believe this helps you, what good does it do to voice it? 

Granted faces and bodies evoke visceral feelings that transcend reason.  Attraction itself is never a choice.  But history has proven that disgust at the idea of interracial or international relationships is the result of social conditioning, and likewise homophobia, transphobia, lookism and ableism thrive thanks to the open support they are given in the media and in everyday conversation.

The battle against lookism is too often dismissed as hopeless by the simplified assertion that “people like to look at pretty people, end of story.”  Yes, we do.  But the definition of “pretty” is too often assumed to be universal, somehow rooted in our biological urge to choose a mate whose genes are resilient.  Studies of history and across cultures prove the definition is socially constructed.  Pale has been considered at times beautiful and at other times sickly.  Tan has been sometimes seen as gorgeous and other times derided on racist grounds.  Round and curvy is sometimes good and sometimes bad.  Skinny is sometimes good and sometimes bad.  Our supposedly “natural” repulsion at signs of unhealthiness is as random as fashion itself, often disenfranchising disabled individuals while simultaneously promoting faces injected with poison, lungs too constricted to breathe properly, bodies too lacking in fat to menstruate, not to mention blue and green eyelids.  Mentioning our repulsion at others’ natural physical features can be so unproductive, so paranoia-inducing, so ultimately responsible for others’ self-hatred.  This why I admire anyone who fights whatever temptation they have to describe what they dislike by instead describing what they love. 

When we tell our loved ones what exquisite hair or adorable hands or gorgeous eyes they have, it’s more a display of affection than a statement of what we require to be intrigued.  When we tell someone, “You are so beautiful,” it’s a testament to the sum of their parts, the combination of their perfections and imperfections.  And there’s nothing wrong with discussing styles or personas one finds attractive.  Gentle voices, deep voices, explosive laughter, sly eyes, short hair, long hair, a graceful step, a firm step, an assertive look, a cool stance; understanding why any of this draws one in leads to more awareness of one’s own character.  It also sparks dialogue that challenges the bland beauty standards of the day. 

But someone’s physical traits alone are superficial—not to mention transient—and placing any real value on them is shallow.  We all have our shallow sides, but we should be embarrassed to advertise them too openly, the way sitcom directors should be embarrassed to have the audience squeal when two characters kiss.

 

 

In Activism, The Medium Is The Message

6 Apr

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

Welcome to Painting On Scars

4 Feb

 

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

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

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

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

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