Tag Archives: Elective Surgery

Germany Rules on Male Circumcision

26 Aug

Justice(Image by Viewminder used under CC license via)

 

We’ve been waiting all summer for this decision.  On Thursday here in Berlin, the German Ethics Council ruled that male circumcision is legally permissible without a doctor’s order, but several conditions must be met:

    • Both parents must be in full agreement.
    • All possible risks to the procedure must be explained in full detail.
    • Local anesthetics must be an option.
    • The procedure must be certified by a medical professional.

Some of these requirements, especially the last two, go against what some fundamentalist religious leaders mandate.  Why all the fuss?  In Europe, where female genital cutting is illegal, male circumcision is only common in Muslim and Jewish communities.  Last year, a German court in Cologne ruled that the circumcision of an underage male constitutes aggravated assault and battery, and the debate has been raging ever since.  It has split the nation into two parties: Those that see the procedure as cosmetic at best and mutilating at worst, carried out on patients too young to give consent, versus those that believe any ban on age-old rituals and tribal markers constitutes religious and/or ethnic persecution.  That the ritual German lawyers sought to ban is a Jewish custom makes it a particularly sensitive case here.

When we hear stories of female genital cutting in Africa, Westerners are generally horrified.  But few in the United States understand that many Europeans gape at our 60% rate of male circumcision and consider it to be of course not quite but almost as cruel.  “How on earth could parents do that to their baby boy?!” is the reaction I get from the vast majority of Christian and non-denominational European males I talk to.  They are much more prone to believe studies citing the problems it can cause—for example, a supposedly higher rate of dyspareunia for women who have intercourse with circumcised men—than studies that downplay such fears.  I usually admit to them that, because it is so very common where I come from, I’d never given it much thought beyond those pop culture jokes about what looks better.

Which just goes to show how powerful cultural customs and values can be.  One culture cringes as the other shrugs.  Both female and male genital cutting involves groups that say we should protect the parents’ right to choose what they think is best for their children without government interference, while the others say the government should protect children from procedures that offer no medical benefit before they are old enough to decide for themselves, regardless of what their parents want.

I’ve written before that as someone who’s undergone limb-lengthening, I know how complex decisions about body alteration can be.  Determining an appropriate age of consent for surgery can be even more complicated.  But also due to my experience, I wince along with Jessica Valenti when parents choose procedures for their children that offer no real medical benefit.  While discussing circumcision, my European friends argue that patients should reach the age of consent before undergoing any procedure that, unlike limb-lengthening, does not become more medically complicated with age.  Should courts ever rule this way, this will inevitably lead to bans on juvenile nose-jobs like the one Valenti cites.  But then what about ear-piercing? 

Years ago, I was a panelist at a conference called “Surgically Shaping Children” at the Hastings Center, a think tank for bio-ethics, where we addressed elective procedures such as limb-lengthening on dwarfs and determining a gender for intersex children.  After a two-day debate and a resulting book, we concluded that the best way to prevent parents from making decisions that could be damaging to their children is to keep both the parents and their children as informed as possible about every issue that’s at stake: medical facts, cultural identity, individual identity, and agency.  The German Ethics Council’s ruling also implies that such comprehensive understanding is necessary. 

I think a ban on circumcision would have created more cultural resentment than understanding.  But the scientific community, and society as a whole, should take the place of the legal system in helping parents understand all the complexities of altering a child’s body without a medical purpose.  There may be no easy answer, but the discussion has got to keep on going.

 

 

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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 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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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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