Tag Archives: Dwarfism

“Richard III Was Dwarf, Doctor Says”

10 Feb

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

 

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

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

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

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

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

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

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

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

 

 

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Universal Disability Rights – Remind Me Again Why We Don’t Care?

9 Dec

 

Well, I was going to write about how conservatives are sometimes more open to discussing issues faced by disabled people than liberals are.  Then on Tuesday, all but eight Republican senators voted against the Convention on the Rights of Persons with Disabilities, making sure the United States distinguishes itself as one of the few nations on earth that will not commit to protecting disabled rights.  Appeals by the likes of the World Health Organization, the American Psychiatric Association, and senior Republicans (and disabled veterans) John McCain and Bob Dole were to no avail.  So I’m not in the mood to write any sort of tribute to conservative ideals this week.

Supporters of ratification like Dole and John Kerry argued that the United States would be leading the world, since much of the Convention was modeled after the Americans with Disabilities Act of 1990.  Opponents argued that this is exactly why ratification is of little importance.  We already have the ADA and we don’t like the UN, so who cares?  But By refusing to ratify the Convention, the United States is undermining its authority, ultimately saying, “Too bad!” to the disabled citizens of other countries that will also abstain, where ableism is sometimes deadly.  (Do we need to talk about the thousands of medical conditions that are still thought to be works of the devil or punishment by God in far too many cultures?)  But this is not just a matter of the United States choosing whether or not to officially lead the world.  When it comes to human rights at home, complacency can be devastating.

 In many respects, the U.S. is not coming out on top.  According to an OECD 2009 study of 21 developed countries cited by the World Bank and WHO last year, disabled people of working-age are more likely to live below the poverty line than non-disabled people in every country but Norway, Sweden, and Slovakia.  This likelihood is highest in the United States, Australia, Ireland, and Korea, and lowest in the Netherlands, Iceland, and Mexico.  According to WHO, the discrepancy between the employment rates of disabled and non-disabled citizens is twice as high in the United States (35 percentage points) as in Germany (18 percentage points).  And in the U.S., the risk of violence against people with disabilities is four to ten times higher than against people without disabilities. 

I will never officially endorse a candidate or a party on this blog.  Despite obvious political trends at the macrocosmic level, personal experience has shown me that people of all political stripes believe in universal human rights and I never wish to alienate anyone over issues not directly related to equality.  But shame on every single senator who blocked the Convention.  No one has ever protected human rights on an international scale through isolationist policies.  In a world where people with dwarfism still have little hope of employment outside the circus, people with albinism are persecuted, surgeries are performed without consent, and a diagnosis of mental illness is thrust upon LGBT people and denied people with clinical depression, international cooperation is crucial.  Otherwise, human rights disintegrates back into its inconsistent old self and becomes nothing more than a matter of privilege.  

 

 

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Lessons Learned From A Laminectomy

2 Dec

Sippy Cup Forgotten

(Image by Randy Robertson used under CC license via)

 

Five weeks ago I had a spinal surgery to relieve compression brought on by my achondroplasia.  I took a break from blogging because, first of all, I’ve only recently been allowed to sit for longer than an hour or two, and secondly, major life interruptions are almost always best discussed from hindsight.  (Even though the personal usually ends up being political, this blog is not and never will be a tell-all of how high my temperature is or how my incision looks today.) 

I will confess that the hardest aspect was the lack of community.  No one at home or in the hospital had the same condition I did.  Since several of my readers have achondroplasia or children with achondroplasia, and I myself was ravenous for any sort of information I could get my hands on, here’s a synopsis of the past five months:

One night in July, I noticed I couldn’t sleep on my stomach without the muscles in my left thigh and hip burning with pain.  I took some Ibuprofen and applied a hot pack but to no avail.  Within a few days, the burning sensation expanded up into my lower back and deep in my backside.  It came whenever I lay on my stomach, lay on my back, or walked more than a few yards.  Strangely, it disappeared when I was sitting up straight.  I had to sleep propped up on pillows to keep the pain at bay and woke up during the night whenever I curled into a new position.  I described it as sciatica – which is, apparently, just a name for a set of symptoms and has various causes.  Maybe sleeping for five nights straight on a friend’s uncomfortable couch had done it?  My doctor gave me a prescription for physical therapy and stronger pain killers, but the medication had no effect and, after three weeks of physical therapy, the symptoms only got worse.    

By the time I met with an orthopedist, the burning began to be replaced with a pins-and-needles sensation that ran all up and down my left leg and worsened with walking.  Once again, it disappeared whenever I flexed my hips.  While the therapists tossed out the usual suspects for usual patients—disc herniation or degeneration, etc.—my family and I had begun to suspect achondroplastic lumbar spinal stenosis.  People with achondroplasia are at high risk for this because our spinal columns are exceptionally narrow and become acutely so with age.  The symptoms described in the medical literature on achondroplasia exactly matched mine.  Between one-quarter and one-third of all people with achondroplasia develop stenosis, usually in their 20s or 30s, and I was a perfect candidate.  Average-sized patients with stenosis are usually encouraged to turn to surgery only as a last resort, but achondroplastic patients almost always require a laminectomy.  And, according to most specialists I’ve spoken with, the sooner the better.  

I hate having surgery.  Talking with the anesthesiologist about all the medications I’m allergic to brought back all sorts of unpleasant memories.  But I eventually got in contact with an excellent team of neurosurgeons who were very informed and reassuringly confident that a laminectomy (without spinal fusion) would be the best defense against permanent paralysis.  And with my 13th operation now behind me, I know several things I didn’t before.

I learned that, unlike orthopedists, neurosurgeons cannot tell you at what time your surgery will take place until the day of, if at all, because emergency cases such as strokes and spinal cord injuries take priority.  Your surgery could be postponed by such cases more than once, as mine was.  It is surreal to find out you just spent a whole day without food or water for nothing, while also finding out the people who knocked you to the back of line are probably fighting for their lives.  

I learned that, contrary to what I had assumed, you wake up after back surgery lying on your back.  I was especially grateful for this after my partner pointed out that I had a black-and-blue mark on my cheek from lying on my face for the two and a half hour procedure.

I learned that the day of surgery is one of the easiest.  Waking up in the recovery room and discovering I could cope with the pain and seeing myself wiggle my feet sent waves of relief everywhere.  Seeing my husband waiting for me in my hospital room was thrilling.  And the drugs took care of the rest.

After that, however, each day threw a new curveball, whether it was the pain of moving, the vomiting that came after moving (typical for spinal patients), or the dilemma of never wanting to go to the bathroom because it destroyed whatever comfort I had finally found.  Unlike the patients whose stenosis had been caused by disc herniation, I could not walk without a walker after surgery and managed no more than baby-steps.  As with limb-lengthening, I learned to take it week by week in order to see that progress was happening, however slowly.  By the third week, the worst pain was gone and I could walk short distances without any assistance.  (After five weeks, I can now manage a few blocks, though it takes me twice as long as it used to and my balance remains fragile, so I like to avoid crowds.)

I learned that after spinal surgery, walking and lying down are good for you.  Sitting and standing are bad for you.  I can’t remember the last time I watched so many films in such a short time.

I learned that sippy cups are perfect for drinking when you have to lie flat on your back.  They make you look ridiculous/adorable.

I learned nurses are among the hardest working, strongest, most fearless people in the world.  No one whose work is free of analyzing other people’s vomit and urine can say otherwise. 

I learned (once again) that there is always someone at the hospital about to go through something a lot worse than what you’ve endured.  Hospitals have a bizarre way of inundating you with more self-pity than you’ve ever felt before and, at the same time, more sympathy for others than you’ve ever known before.

I learned that as an adult I could see how much skill and patience goes in to being a great caregiver.  When you’re a child, you expect—and should be able to expect—your parents and relatives providing unconditional support and tolerance for your needs and your bad moods.  When you’re an adult, you’re more likely surrounded by friends and partners; people who choose to check in on you and listen to you and soothe you for three hours straight and accompany you to the doctor and run errands for you and reach things you can’t out of their own free will.  You begin to understand the sacrifices your family made and those your true friends are making.  Just because you don’t deserve the raw deal you’ve been given doesn’t mean you deserve to take their patience or attention for granted.  No matter how bad you think you have it, always, always say thank you to whoever is being kind to you.  (And take a break from whoever isn’t.)

So now I have a new scar and hopefully I’ve helped flood the web so that googlers can find information about “achondroplasia spinal stenosis” more easily.  In my experience, seeing what you’ve learned, what you’ve been humbled by, is the whole point of having scars.

 

 

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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 at.  Unless 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.

 

 

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In the U.S., Paralympic Athletes Might As Well Be “Untitled”

9 Sep

(Via)

 

The Paralympics end today after a week of what seemed to be decent coverage, though it depended on where you tried to watch them.  The host country allotted 150 hours of coverage to the Games, Australia clocked in 100 hours, and Germany and France allotted 65 and 77 hours respectively.  Meanwhile, the United States broadcast a whopping five and half hours and no live coverage at all, as per tradition.  Yay.

Considering how little attention was afforded the Games themselves, it is unsurprising that there was little dialogue stateside about disability rights and issues of equality.  What a missed opportunity.  The British media immersed itself in it, with articles like “Is it Ok To Call The Athletes Brave?”  Indeed, disrespectful attitudes toward people with disabilities today are more often implicitly patronizing than openly derisive, and it was pleasing to see the public address this.

The Paralympic Guide to Reporting that was handed out to media outlets brought up several interesting points about language.  It rightfully asserts that disabling conditions or features should not be turned into personal nouns that define the entire person or people in question: i.e., the disabled, the blind, a paraplegic.  Adjectives and verbs—a paraplegic athlete, athletes with disabilities—are less limiting, portraying a medical condition as one of many characteristics a person has.  (This has been repeated to me ad infinitum by a friend who’s uncomfortable whenever I refer to myself as a dwarf.  “You are Emily.  You have dwarfism!” he insists.  “And you have hazel eyes and freckles and long hair…”)  Other terms and phrases to avoid noted by the guide include:

normal

able-bodied

wheelchair bound

confined to a wheelchair

suffers from

afflicted with

victim of

The last three are commonly used today.  They’re problematic because they imply that a disability is always regrettable.  Sometimes it is, and sometimes it isn’t.  Suffering may have been an apt term for my achondroplasia two months ago, when severe lumbar pain made it hard for me to think of anything else during a sightseeing trip in England.  But suffering has nothing to do with all the ways in which my condition has brought me in contact with all sorts of unique people and places and outlooks.  I can’t imagine my life without it.  It’s my version of normal.  Unless the patient specifically says otherwise, any assumption that a disability is a round-the-clock tragedy is wrong.

For the sake of splitting hairs, I sometimes think the words disabled and disability are problematic because they automatically draw attention to what a person cannot do.  In the worst case, they can sound pitiful.  I’m very fond of the word typical in lieu of normal or able-bodied because it highlights that the standard by which we group people is based on a body type chosen by the scientific community.  It implies medical averages, not social values.  Typical is used in everyday speech to mean “usual” at best and “unexciting” at worst, unlike normal, which implies a state of correctness worth striving for, like in the phrase “back to normal.”  Discussions of autism and some other psychiatric conditions now commonly use the term neurotypical to refer to people without the diagnoses.  Maybe physiotypical could someday be the term for non-disabled people.

But as I’ve said a few times before, the search for acceptable terms is not about deciding what automatically classifies a speaker as Tolerant or Bigoted.  Words are only half as important as the intentions behind them, and the desire to understand another’s perspective is what separates an empathic person from a selfish one.  In the recent words of Professor Charles Negy, “Bigots… never question their prejudices.”  

The above list of do’s and don’ts is probably disconcerting to some readers.  I always feel simultaneously inspired and confused when given a list of hot-button words I’m told to avoid from now on.  Hell, I’ve written the word able-bodied before, and I’m someone excluded by it.  I find no problem with the word handicapped—I had handicapped housing rights in college and a handicapped parking sticker during my limb-lengthening procedures—but it’s considered offensively archaic in the U.K., apparently similar to invalid or cripple.  As we’ve seen in the midget vs. dwarf vs. LP debate, rarely is there ever a consensus in a given community over labels.  Labels are almost always problematic.  In my experience, the dialogue always matters more than the conclusion it comes to. 

And the inability of the U.S. media to have such dialogue during the Paralympics was pitiful.

 

 

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Fighting the Good Fight or Feeding The Ego?

19 Aug

Body Art Chameleon“I know so many men and boys and trans individuals who wear dresses for so many different reasons, and they do it a lot more than mainstream movies, TV, and advertising suggest.” 

I felt my fingers tremble just a tiny bit as I typed this sentence last week.  Not because of the subject matter.  Not because of the point I was trying to make.  Because of the “I.”  Was that word going to drive home my point, or derail it?

Studies show personally knowing someone who belongs to a minority group increases the likelihood that you will have empathy for that minority.  If you have a family member who is gay, you’re less likely to oppose marriage equality.  If you know someone with dwarfism well, you’re less likely to see their medical diagnosis whenever you look at them.  GLAAD emphasized the political potential for all this in a brilliant meme last fall.  Urging LGBT individuals to talk openly about their partners and love lives at the dinner table with the same frequency as their straight family members, they called it, “I’m Letting Aunt Betty Feel Awkward This Thanksgiving.” 

Truly caring for someone with a different perspective often—though, sadly, not always—inspires us to try to understand their perspective and this enhances our own.  Letting others know that They are not so different from Us because we know and care deeply about many of Them can effectively break down barriers.  And, when discussing social injustice, it’s always best to ask someone with personal experience, lest we unwittingly make erroneous assumptions.  But, of course, just having friends who belong to minority groups doesn’t solve everything. 

As I wrote about knowing men and trans people who wear dresses to elucidate that They are actually Us, I cringed at the idea of flaunting my loved ones’ Otherness for the purposes of my blog.  By inserting myself into the statement, there was a risk that some would think I was trying to prove my open-mindedness.  I’ve bragged like that in the past, especially when I was an egocentric teen.  (You know, back when you practiced writing your name over and over?)  And my own Otherness has been flaunted a few times by friends and acquaintances seeking attention for their open-mindedness.  It’s a serious problem in the social justice movements.  

In Black Like Me, the author tells the story of a New Yorker he encounters who has come to the South to “observe” the plight of the black citizens.  “You people are my brothers,” the New Yorker insists.  “It’s people like me that are your only hope.  How do you expect me to observe if you won’t talk to me?”  Although the man’s opposition to segregation was morally correct, his overt self-regard and patronizing disgust at his brothers’ “ingratitude” makes it one of the most cringe-inducing scenes in the book.

In Baratunde Thurston’s fantastic memoir, How To Be Black (just out this year), the author asks writers and activists about white people’s fear of being called racist.  damali ayo, the author of How To Rent A Negro and Obamistan! Land Without Racism, says it best:

It shows our values as a culture when somebody says, “I don’t want to be a called a racist.”  Really what they’re saying is, “I want you to like me.  I don’t want to not be liked.  I want to still be okay with you.”  They don’t mean, “What I really want is to know and understand experiences of people of color…”  That would be great.

And so, it just shows that, as I always have said, we are operating at this third-grade level of race relations.  And it’s that third-grader that goes, “Please like me, do please like me,” versus “Can I understand?”

We all want to be liked and we all want to do the right thing.  But the the third-grader mindset can’t help but focus more on the former.  It is evident in common phrases like:

“We were the only white people there!” 

 “I’ve always wanted a gay friend!” 

“I think I’m [bisexual/learning disabled], too, because I [kissed a girl once/have difficulty concentrating]!” 

“I’m not prejudiced!  I have so many [nonwhite/foreign/LGBT/disabled] friends!”

Of course, in certain contexts and worded differently, these statements would not be offensive.  What makes them offensive is the need to let others know all about us, the belief that our support for equality deserves praise, the patronizing (and unjust) view that minorities should be grateful for our lack of prejudice.  We can note that we were the only white people in a group in order to spark a dialogue about social segregation, or we can flaunt the experience like a medal from the Liberal Olympics.  We can worry that having a homogeneous circle of friends will limit our perspective, or we can believe that racking up as many minority friends as we can is proof of our expertise on all minority issues.  We can try to empathize with someone labeled “different” because of their sexuality or biology in order to remove stigmas and barriers, or we can try to seek the attention they are getting for ourselves.  We can respond to accusations that we have offended by trying to understand why someone would be hurt, or we can respond by listing our liberal credentials.

This depends primarily on the individual.  Someone who likes to brag about their open-mindedness usually brags about most things they do.  This personality trait seems to be particularly common among educated elites—parodied so well at Stuff White People Like—because elite education frequently fosters competitiveness.  (Taking the time to count your degrees, count the books you own, count the minority friends you have…)  Competitiveness is anathema to selflessness.   But while bragging about the number of books we own is silly because we’re obviously missing the point of reading, bragging about the number of minority friends we have is grave because we’re missing the point of human rights.

Do we donate to charity privately because it makes us feel better to spend the money on someone else?  Or do we hope that others will notice and admire our sacrifice?  Then again, drawing attention to the work we’re doing is usually important if we want to advertise the cause and urge others to join.  That’s where things get murky.

A while back, within a few months of each other, two friends stood up to ableism and told me about it after the fact.  A guyfriend came fuming to me about his teacher who had used the word “midget” and who had then insisted, despite my guyfriend’s protests, that it wasn’t offensive at all.  A girlfriend told me that a mutual acquaintance had said something crass about my dwarfism and that she had told him to back off repeatedly because she wouldn’t tolerate such bigotry in her presence.  The first friend focused his story on the offender’s behavior.  The second focused her story on her heroic defense.  People who want to understand the problem more than anything tend to focus their feelings on the injustice they encountered.  People who want to be liked more than anything tend to focus their feelings on their performance.

This shouldn’t ever deter anyone from working for equality and social justice, from celebrating diversity or from spreading awareness.  Open minds should always be highly valued.  But to paraphrase the recent words of the Crunk Feminist Collective, by not being racist—or sexist or homophobic or lookist or ableist or transphobic—we’re not doing anything special.  We’re doing what we’re supposed to do.

 

 

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When It Comes To A Boy In A Dress, The Question Is: What’s Wrong With Us?

12 Aug

When I was about 10 years-old, a friend of mine with achondroplasia was being teased at her school for being so short.  After being shunned at lunchtime repeatedly—“No freaks at this table!”—her mother finally called her local chapter of Little People of America, which sent a spokesman into the school to give a presentation.  After he read Thinking Big to the class, explaining thoroughly in an age-appropriate manner why my friend looked the way she did, one of the biggest bullies raised his hand.  “So, you mean, she’s little because she’s a dwarf?” he asked.

The spokesman offered to let my friend answer the question herself and she replied, “Yes.”

The boy who had teased her so much suddenly had tears in his eyes.  It later came out that his new baby brother had just been diagnosed with dwarfism.  He had had no idea until that moment that his brother was going to grow up to look just like the girl he’d targeted. 

To anyone who insists, “He couldn’t have known,” he could have.  We could have let him know.  What is school for, if not the pursuit of knowledge?  With the exception of women, all minorities risk marginalization not only by others’ lack of empathy but by the lack of visibility automatically brought on by their lower numbers.  Any place that prides itself on learning should pride itself on learning about other perspectives, other identities, other behaviors, no matter how rare.

So “What’s Wrong With A Boy Who Wears A Dress?” asks The New York Times magazine on its cover this week.  Despite that the flippant headline sacrifices sensitivity for saleability, at least it’s shedding light on the subject.  I know so many men and boys and trans individuals who wear dresses for so many different reasons, and they do it a lot more than mainstream movies, TV, and advertising suggest:

 


When asked why he likes regularly wearing his wife’s nightgowns, one man shrugged, “It’s comfy.”

The Times article has its flaws.  When discussing how boys who wear dresses turn out later in life, the article stuffs them into three overly simplistic boxes: a) gay, b) heterosexual, and c) transsexual.  Such labels do not encompass all the ways and reasons people of various gender identities and sexualities wear dresses into adulthood.  As one friend observed, “The path of least resistance for so many is to wear dresses in secret.  By using these limiting categories, the article implies that and also does nothing to change that.”  The use of the categories also implies that these individuals owe us a clear-cut, sex-based explanation for their behavior, which is itself a symptom of narrow mindedness.  No one demands a woman explain why she likes wearing jeans.

And yet the article also keeps its subjects silent.  While documenting the struggles of both conservative and liberal parents, the author would have been wise to include the perspective of adults who wore or wear dresses.  In the absence of their agency, their nervous parents are essentially speaking for them.  (Rule Number One in Battling Intolerance: Never, ever let a minority’s agency be ignored.)

But for all these errors, the article concludes with those who ultimately support their sons as best they can.  One dad heard that his five year-old was being taunted in kindergarten for wearing pink socks, so he bought himself a pair of pink Converse sneakers to wear in solidarity.  The kindergarten teacher jumped in, too, opening up a class discussion about the history of gender rules and shocking the kids with the information that girls were once not allowed to wear pants. 

Whenever reports on “different” children list the anxieties parents have about their kids not being accepted, the message often starts to get muddled.  Sometimes the article is clear that we as members of society need to get over our hysterical hang-ups and start accepting these children as they are so that they and their parents no longer have to worry what we and our own children will say.  Too often, however, the article spends so much time quoting the parents’ fears that the source of the problem starts to sound more and more like the child’s disruptive identity, not others’ clumsy reactions to his identity.  And that’s wrong.

Whenever a child is made fun of for being himself, it’s our problem, not his.  Biologists can say what they want about a fear of difference being an evolutionary adaptation, but our culture values differences two ways, either as “abnormal” (i.e., strange and pitiful) or “super-normal” (strange and admirable).  The Beatles’ mop-tops were abnormal to parents of the time (“They look like girls!”), and super-normal to their teenage children.  In the nature vs. nurture debate, we need to stop saying “nurture” and start saying “culture,” because changing the environment a child grows up in means changing the behaviors of more than just one set of parents.  Mine never once told my younger brother, “Only sissies cry,” but his little league coach told the team just that.

This is our culture and we are the ones shaping it as the creators and consumers.  By making and watching films and TV shows that state what’s “gay,” “wimpy,” “ugly,” “freaky,” or “gross.”  By stating, “Guys just don’t do that,” or letting such remarks go unchallenged.  By repeating traditional views of minorities—e.g. the dwarfs of Snow White and Lord of the Rings—and failing to provide more realistic portrayals with greater frequency.  As adults, we bear so much responsibility for shaping the world the younger generation is trying to navigate.   (As this German Dad proved so well.)

Since the Sixties, many parents and teachers and educational programs have embraced books that promote understanding of ethnic diversity such as People and of disability such as I Have A Sister: My Sister Is Deaf to broaden our children’s perspective and nurture empathy toward people they do not encounter every day.  Yet books like My Princess Boy or The Boy In The Dress have yet to break into the standard curriculum.  There seems to be an unspoken assumption that such books are primarily for the boys they’re about.  (Buy them only after your son starts actively asking for a tiara.)  But everyone should be reading them, for the same reason everyone should be reading Thinking Big.  By waiting to address the idea of free gender expression until a little boy gets bullied, we are cultivating the assumption that the problem never existed until that little boy came along.  The problem was always there.  

Critics have argued The Boy In the Dress is unsuitable for any boy in real life who feels the like the protagonist because any school he attends in real life is far less likely to rally around him so enthusiastically.  But that’s exactly why this book needs to be read and discussed and picked apart by school classes around the world, not just by boys alone in their bedrooms. 

As a teacher, babysitter and relative, I encourage the little boys in my life to play dress-up, house or princess with their female playmates because I’ve yet to hear a convincing argument as to why it’s any different from encouraging the girls to get down and dirty in the mud with their brothers.  Sure it’s radical—just as my mother’s wearing jeans to school 42 years ago was radical—and the last thing I want to do is turn a child into something he’s not.  But as with a girl, I want him to feel that every option is open to him, despite any hang-ups tradition has about it.  And if it becomes evident that he truly has no interest in anything soft or sparkly, I at least want to do my best to ensure that he never, ever makes fun of any boys who feel otherwise.

 

 

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When You Gonna Start Makin’ Babies?

22 Jul

Gotcha by Clint McMahon(Image by Clint McMahon used under CC license via)

 

A while back, tucked inside one of my longer posts was a link to a conversation Rosie O’Donnell had in February with comedienne Chelsea Handler on her show in which she discussed her phobia of dwarfs.  Driven by Handler’s insistence that sex with a dwarf would be “child abuse,” the conversation devolved into musing about how dwarf women give birth:

O’Donnell: When a little person has a normal-sized person, I don’t understand how that happens.

Handler: That I don’t understand!

O’Donnell: I don’t get it.  How come the little person isn’t dead when the normal-sized baby comes out?

Handler: Sometimes two smalls make a tall.

O’Donnell: But how does it come out?

Handler: I don’t know.  I think anything can come out of that.

For your information, Chelsea, when it comes to achondroplasia—the most common type of dwarfism—“two smalls” have the exact same chance of having a “tall” (25%) as they do of having a child with two achondroplastic, homozygous genes, which is always fatal.  (The baby is usually stillborn or dies within the first few weeks after birth.)

O’Donnell has since apologized for talking about her phobia of dwarfs, though Little People of America have rightly said she missed the point.  Many have said that as an openly gay woman, she should know better when discussing prejudice, but I was more surprised by her callousness in light of her being an adoptive parent.  And I notice my (hyper-)sensitivity to that issue seems to grow every time I encounter it.

And of course I seem to be encountering it everywhere nowadays.  “When ya gonna start makin’ babies?”  Almost all of us in our late twenties and thirties are used to being asked this regularly.  I’ve been told I should take it as a compliment, since it’s rarely asked of couples who would make terrible parents.  Yet I’ve been amazed at how intrusive the questions and comments can be, how often something as personal as parenthood is treated like small talk.  It’s understandable as more of my peers become parents; the prospect of making humans is daunting and people need to vent about it.  Those who don’t want children while living in a baby-obsessed world feel the need to vent back.  All this venting results both in community-building and in tactless comments that knock those outside of the community. 

One of my friends who miscarried was told by a stranger, “Well, it wasn’t a real baby.”  A friend who adopted a girl from South Korea was told by a fellow church member, “Her eyes aren’t that bad.”  A friend who had a C-section was told she must not feel as close to her child as women who give birth “naturally.”  Childfree friends have been told that their lives will be never be “complete” until they’ve had children.  A biology professor who had two foster daughters was asked if he was worried they would inherit their imprisoned father’s criminal tendencies because “that stuff’s in the genes, y’know.”  I’ve been told it’s selfish to want a child with achondroplasia, it’s selfish to want a child without achondroplasia, it’s selfish to allow my child to inherit my achondroplasia, it’s selfish to play God with genetics, it’s selfish to want to biologically reproduce what with the world population exploding, and it’s selfish to worry about any of this because it’s not like I’m infertile.  All of these comments were well-intentioned. 

Usually people are simply thinking out loud when they say such things.  It is important to remember that no one can be expected to know exactly what to say in unusual circumstances, lest I end up lecturing as if I’ve never inadvertently offended anyone.  Almost all of us have good intentions, but many are unaware of how quickly we redirect conversations back to our own experiences, how easily we forget to prioritize listening over interrogating, empathy over curiosity, respect over Thank-God-that’s-not-me! complacency.   

Hereditary conditions, finances, disabilities, infertility, relationships and emotions ensure that having children is not a universal experience.  There is no right way for everyone and any opinion that can in any way be construed as a judgment can cut someone deep because babies and bodies are entangled in supremely visceral feelings.  It’s no coincidence that Roe v. Wade was argued based on the right to privacy: Something as sensitive, as complicated and as profoundly emotional as your reproductive choices should be volunteered at your discretion. 

That said, parenthood is all about making decisions that will inexorably affect someone else’s life, not just your own, and this is why it is such a hot-button issue.  Our reproductive decisions, more than any other decisions, are the intersection of personal freedoms and social responsibility.  As the daughter of a social worker who worked for Child Protective Services, I have firm beliefs about right and wrong when it comes to parenting.  As someone whose genes make the prospect of parenthood unusually complicated, I’ve begun to see how judgmental those beliefs can come off when the presentation is sloppy. 

As an avid reader of Offbeat Families, I know that sharing knowledge and experiences can help others in so many ways.  But as someone who feels very ambivalent about offering up my not-yet-existent children’s potential situation as conversation fodder, I’ve become less trustful of many of my most well-meaning friends and family members.  Questions about my situation so quickly transform into lectures about their situation.  (I’ve also noticed that the more nervous someone is, the more they lecture.)  Besides making me more guarded about my personal experience, it has also taught me to stop myself from making snap judgments about others’ reproductive choices.  When dealing with anyone else’s family planning, I have been humbly learning to: 

 1)      Fight the urge and try not to ask others about their reproductive choices, especially in the context of small talk.  Let them volunteer it.  Go ahead and volunteer your own stories, but don’t press the other person if they do not respond in kind.  We can never assume what’s lurking under there. 

 2)      Beware of talking about the decisions you made in a way that inadvertently hurts those who must make different decisions.  This is also very tricky, but if you are convinced water birth is the only way you can imagine doing it or you are proudly childfree or you know exactly how to make sure it’s a girl, be aware that people in different financial or medical situations may not have these options at all.    

 3)      When someone does want to share something you have little experience with (e.g. adoption, stillbirth, staying childfree, etc.), prioritize listening and learning over immediately finding something to compare it to.  Relativizing struggles can be helpful and I’ve gotten some great feedback from friends, but my guard goes up when someone without achondroplasia tells me right away they know what I should do because they know someone whose baby has diabetes, they took a college class on bio-ethics, or they heard something like it on the news.

4)      Only offer your ethical opinion if the person makes it perfectly clear they want to hear it.  Every society bears the responsibility of taking a legal stance on complex reproductive issues: prenatal testing, genetic counseling, birth control, abortion, sterilization, drug testing, assisted reproductive technology, the life of the mother vs. the life of the fetus, custody, adoption, foster care, etc.  We are all compelled as citizens to be aware of the laws concerning these issues.  And we all have our own opinions about them.  But anyone directly affected by them is likely to have heard it before and to have been thinking about it longer than we have.  I’ve been thinking about the effects my dwarfism may have on my kids since I was fourteen.

5)      Don’t gossip about others’ decisions behind their backs.  It makes your listeners aware how they will be talked about when it’s their turn to decide about having children.  There is a fine but crucial line between trying to understand situations that are new to you and using someone’s situation to tell an interesting story.

6)      Do try to actively listen when invited to, saying truly supportive things, as one or two particularly fantastic friends of mine have, such as: “I can only begin to imagine what I’d do in that situation.”  “Let me know if you don’t want to answer this question…”  “On a much smaller level, it sounds a tiny bit like what I felt when…”   “No matter what you decide, I know you’ll be great at it because…”  “I’m always here to listen if you ever need to spill, as long as it helps.”

Of course, in listing here what I have learned not to do, I can only hope that my own past SNAFUs have been minimal.  Insensitivity, by definition, is the disconnect between intention and effect.  Embarrassed apologies to anyone whose toes I stepped on while stomping through my own bigfooted opinions.

 

 

Cross-posted on August 27, 2012 at Offbeatfamilies.com

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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.

 

 

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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.

 

 

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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, Don’t 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.

 

 

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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.

 

 

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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.    

 

 

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The Good, the Bad and the Boring of “Life’s Too Short”

21 Mar

 

Today Feministing.com features my review of HBO’s Life’s Too Short, the first sitcom I’ve ever seen starring someone with dwarfism.

 

 

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The Make-Believe Dwarfs of My Childhood

3 Mar

lookism

(Image by Paul Bailey used under CC license via)

 

Though it often can be the best way to get a message across, art complicates politics because it mixes matters of taste with matters of justice.  One lends itself to reason, the other doesn’t.  Too often sentimental feelings about a film or song with offensive elements will result in fans denying the offense altogether.  “Little House on the Prairie isn’t racist!  I grew up on it and I turned out fine!”  Maybe you did thanks to your innate curiosity about the experiences of others or inspiring teachers in your life, but you didn’t learn anything valuable about civil rights from that book.  I grew up on Dumbo and I think it is an artistically brilliant film with many good messages, one of which is the problem of lookism.  However, getting a white actor to put on his best black voice to play a character named “Jim Crow” in the heyday of the minstrel shows was a supremely stupid idea.  We shouldn’t deny ourselves our personal tastes, but that shouldn’t preclude calling out the artists’ mistakes.   

Likewise, we shouldn’t cry wolf over artwork that simply doesn’t match our tastes.  I’m one of the few people on earth who doesn’t enjoy The Lord of the Rings—I saw it for the first time in my twenties and fell asleep—but that’s primarily because I get bored by fantasy epics that are predominantly serious.  (I’m not wild about The Chronicles of Narnia either.  If there’s going to be magic, I prefer the tongue-in-cheek tone maintained in the worlds of Roald Dahl, L. Frank Baum or the Pirates of the Caribbean.)  It is sometimes difficult to divorce my dislike of the style from my annoyance that the Lord of the Rings definition of a dwarf receives more attention in almost every corner of our culture than the one based on reality.  Google “dwarf” right now in the image search and see how long you have to wait until a real human being is featured.  But neither Peter Jackson nor J. R. R. Tolkien is solely responsible for this; the latter of course drew this definition from the fantasy tradition.  And the use of dwarfs in fantasy is not always problematic. 

Peter Dinklage has demonstrated that dwarfism is no more important than skin color or foot size in Game of Thrones.  And while I couldn’t sit through Lord of the Rings as an adult, I have a special place in my heart for the 1988 film Willow, which was panned by almost every critic I respect.  Perhaps my nostalgia and childhood crush on Warwick Davis blinds me to the film’s artistic faults, but my enjoyment of it was rooted in politics before I even knew the word “politics.”  Because for once a dwarf was the main character.  And he looked like a real dwarf; he wasn’t wearing any pointed ears or goblin nose or orange face-paint.  And I wanted to be Sorsha, the bad-ass warrior princess.  Yes, she’s a damsel in distress during the final battle, but it’s 3′ 6″ Warwick Davis who wins that battle for her, not buff Val Kilmer. 

While I’m uncomfortable with fantasy’s tradition of insisting that dwarfs are a separate race and thus, in many cases, non-human, I loved Willow for giving both the dwarf-sized people and the average-sized people names free of connotation (“nelwyns” and “dakinis”).  They are neutral words that demonstrate one of the advantages of neologisms.  (Though I’ll admit the film’s line “Stupid dakini!” has echoed in my head at various points in my life.)  The film also uses the fictional word “peck” as the thinly veiled equivalent to “midget,” an insult the eponymous character must endure from dakinis throughout the film, adding more gravitas to his saving the day and personal appeal to dwarf viewers like myself.  Too often in fantasy, physical characteristics are indicative of personality traits.  This is an occasionally racist, always lookist device that disenfranchises hideous hags, macho musclemen, dark demons, pretty princesses, and innocent invalids.  Willow offers a welcome respite.  As sappy and as simple as the message is—anyone can be a hero—it bears repeating.

Speaking of lookist, I also adored Snow White and the Seven Dwarves as a kid.  I always played Snow White, of course—what child doesn’t imagine themselves as the attention-getting protagonist?—but I was also secretly proud that the first feature-length animated film, one of the most famous of the Grimms’ fairy tales, included dwarfs who weren’t ludicrously unrealistic.  They were kind, they had no mysticism and, as much as I loved her and her poufy dress, they had far more personality than Snow White herself.  For these reasons, I didn’t mind using them as an example when children asked me about my size.  My mother once said, “We’ll write to Disney and tell them most dwarfs aren’t bashful or dopey at all!”  I recall at the time wishing she wouldn’t put a damper on a film I loved so much, but now I am grateful to her for fostering such moral vigilance in me.  

Because once I hit puberty, I instantly saw the problems.  Like Disney’s The Hunchback of Notre Dame and scores of other films, Snow White asserts that male characters who are disabled or deformed can never hope to get the girl.  Considered innocent, asexual people, they are doomed to the Friend Zone.  And women with disabilities?  There aren’t many fairy tales about them.  The story emphasizes even in Snow White’s name that looks are everything.   

My childhood in combination with my experience with dwarfism endowed me with a nostalgia for stories I nevertheless was forced to analyze critically as I grew up, so I cannot deny either.  Everyone should keep a healthy distance between one’s understanding of the world and fairy tales.  My partner and I used the above image of Snow White on our wedding invitations, although we changed the slogan to “Everyone Is Beautiful”—a lesson I did not learn from Snow White herself, but from learning how my dwarfism conflicted with her.

 

 

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Dwarf-Tossing: Something I Really Don’t Like Thinking About

18 Feb

 

I was recently invited to write a guest post for Feministing.com. I’ve written about dwarf tossing and it appears in today/yesterday’s edition of the blog here.  (I apologize should this news seem late in coming – I’m writing to you from Tokyo where the time difference is working against me.)

 

 

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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.

 

 

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The Simpsons, Dwarfism & Getting It Almost Right For Once

12 Nov

Livro ou TV?(Image by Lubs Mary. used under Creative Commons license via)

 

Somewhere, among the many things cluttered in the back of my head, has long been the wonder as to whether The Simpsons would ever address dwarfism as a topic. Last night, I found out they did two years ago in the episode “Eeny Teeny Maya Moe” and I was shocked to see them decide against the freak show trope that our generation adores so dearly.  Not only did they transcend the snickering, but they pounced upon it and deftly demonstrated how blurred are the lines between comfort and discomfort.

Of course it feels silly to be grateful upon seeing one’s difference portrayed respectfully and productively.  But forgetting all the crappy media that take cheaps shots at dwarfs (James Bond, The Man Show, Celebrity Apprentice, Austin Powers), I’ve become quite used to good art reveling in the yuk-yuk fascination (Scrubs, This Is Spinal Tap, QI, Bob Dylan).  Not to mention the fantasy genre’s long-held tradition (from The Wizard of Oz to The Imaginarium of Dr. Parnassus) of utilizing dwarfism to denote either a separate race or mysticism (“It must be a fucking dream, there’s a fucking dwarf in it!“), which is not explicitly offensive, but also not particularly helpful in deconstructing prejudice and misconceptions.  Across the genres, Hollywood usually contributes more to the list of names we get called (Oompa Loompas, Hobbits, Mini-Me, etc.) than to diversity awareness.

The Simpsons episode isn’t perfect – how does one deal with minority issues perfectly? – but I was quite pleased.  The one moment that left a bitter taste in my mouth is the final line: “Who would have thought a woman so short could make me feel so big?”  Little People of America and many of their supporters perpetuate this same, pathetic slogan of empowerment: physically short, but mentally/spiritually/emotionally huge.  Short, but.  Little, but.  You’re well-meaning, but.

Little is not less.  Little is not inferior.  Little is not cute.  Little is not submissive.  Little is not weak.  Little is not a Napoleon Complex.  Little is little.  Big is not greater.  Big is not better.  Big is not powerful.  Big is not dominant.  Big is not strong.  Big is not a Gentle Giant.  Big is big.  To consider size as indicative of personality traits is as ludicrous as equating anything from freckles to elbow shape with personality traits.  (Any attempt to compliment Oprah Winfrey or Alice Walker by saying, “She may have been dark-skinned, but she brought light to the lives of many” would be considered wholly idiotic and righftully so.)  Having two x chromosomes does not impede my intelligence or independence or strength, and neither does having an autosomal dominant mutation in my fibroblast growth factor receptor gene 3.

If you want to praise an individual’s ability to overcome social obstacles, do not place blame for the obstacles on their genetics.  Society’s incessant xenophobia and vanity are constantly let off the hook because a genetic difference is still seen as that which upsets normalcy, rather than that which is handicapped by our delusions of normalcy.  It is all too often supported by the reasoning that if a majority is scared of a difference, then it must be a natural fear, and natural is practically synonymous with good.  It will take quite a few more episodes like that on The Simpsons before the discourse changes and someone says, “Who would have a thought a woman so shat on by our culture’s omnipresent lookism could have the patience to deal with my own individual prejudices?”

 

 

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