Does This Feel Ableist To You?

10 Mar

(Via)

 

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

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

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

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

 

 

Feel free to explain your answer in the comments.

 

 

 

 

 

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Wheelchair Problems

24 Feb

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

 

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

 

hands

curb

pee

stairs

 

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

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

 

 

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The People You Meet When You Talk About Human Suffering

17 Feb

 plastic crowd

(Image by Boinink used under CC license via)

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

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

 

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“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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“If He Was a Wee Bit Closer, I Could Lob a Caber at Him, Ye Ken”

3 Feb

 

 

Time for another break from the tough stuff.  I want to talk about Disney.  (In earnest, mind you.  As always.)  I just saw Pixar’s Brave and no, I’m not going to write about her feminism—or the ludicrous musings about her lesbianism—or the radical imperfectness of her eyebrows.  What pleased me most about this film was its break from the Broadway tradition that has been dominating—dare I say strangling—animated cinema for decades.  Throughout my childhood, Disney and their competitors would take you around the world with Alan Menken and his endless supply of wide-mouthed Middle American show tunes as your guide.  The main characters’ accents ranged from Beverly Hills to Burbank.    

Like The Princess and the Frog, Brave has the guts to feature songs, accents, and expressions native to the story’s setting.  And it’s about time.  The Broadway model has its merits, but it can start to feel like overkill when it forbids any trace of historical or foreign flavor.  When it comes to their family films, Hollywood has traditionally handled their American audiences like cultural infants.  There conventional wisdom asserts that any voice that doesn’t immediately evoke baseball and apple pie risks obliterating our ability to empathize.  Only “artsy” films for grown-ups like Brokeback Mountain or Capote dare to let the dialect match the backdrop.  Hence our heroes Aladdin and Belle and Ariel and Simba and Esmeralda, who all sound like they went to school with the cast of Saved by the Bell.  As The New York Times observed in 1997, the closest the actors in Anastasia ever came to St. Petersburg was Pasadena.  A character speaking the Queen’s English has been permitted with some regularity, but if they’re not Julie Andrews, they’re probably the villain or the butler.         

Paradoxically, these animated family films set in far off lands usually feature one odd character who does speak with a local accent.  So is this proof we can catch words pronounced differently, or does it not matter what Token Foreigner says because his character is inconsequential?  Beauty and the Beast lets one or two sidekicks babble, “Ooo la la!” and “Sacre bleu !” but pretty much leaves the plot exposition up to everyone else.  In Aladdin, the Arabic accent belongs only to the characters with the fewest lines, such as the merchant—who sings the racist song that was later edited—and Gazeem the thief, who dies before the end of Scene One.  And by the way, I haven’t been able to find anyone in The Little Mermaid who sounds Danish, under the sea or above.

Not only does Brave inject its lines with a kick-ass charisma brought on by Scottish brogue, but most of its voice actors—with the exception of Emma Thompson and Julie Walters—are actually, truly, veritably from Scotland.  Traditionally, the Token Foreigner in a children’s film has been provided by an American actor putting on a stereotypical accent.  (Kelsey Grammer as a Russian aristocrat, Jerry Orbach as a French candlestick… )  The ability to imitate an accent is a great skill for both an actor and an interpreter, but it can easily go horribly wrong without anyone in charge of the film noticing.  The fact that Dick van Dyke got away with his impression of Cockney in Mary Poppins suggests that U.S. film critics of the time had pretty low standards.  Meryl Streep has been famously lauded for her ability to sound authentically Italian, Polish, and British, but almost none of those singing her praises are Italian, Polish, or British.  Her portrayals may very well be accurate, but ever since Mary Poppins, Americans have a bit of a reputation for being too easily fooled.  My Nordic partner always rolls his eyes and shakes his head at the Seinfeld episode that tried to pass off this accent as Finnish:

 

 

This is not to say that Americans are the only ones who can’t tell Finnish from gibberish.  I’ve met plenty of French people who think Japanese sounds like that pathetically generic “Ching-chong-chang!”  And Brits who have claimed—a little arrogantly—that the U.S. does not have as many dialects or accents as the U.K.  Ethnologue cites 176 living languages in the U.S. compared to the U.K.’s 12.  Great Britain and Northern Ireland may contain more dialects—though I would bet their dialects are fewer in number while boasting more speakers per dialect—but this begs the philosophical question of what separates a dialect from a language.  The joke among linguists goes, “A language has an army and a navy.” 

Every culture tends toward simplistic views of other cultures.  When you begin to type “Brave Pixar” into Google, you get the apparently popular question, “Brave Pixar Irish or Scottish?”  Anyone outside of the Celtic-speaking regions could be asking this question.               

I’m sure Brave is still rife with Scottish stereotypes that are more craved by Hollywood than are authentic.  And the ancient clans of the Highlands most likely sounded nothing like Billy Connolly or Craig Ferguson.  But it is nice to see the filmmakers trust us enough to handle protagonists who do not speak exactly like the average American moviegoer.  After all, what is the point to hearing stories from far off lands if it’s not to hear things we may not have heard before?  And the more we are exposed to different authentic accents, the more likely we are to realize that every one of us has one.  And that somewhere, someone is smiling at the way we talk.

 

 

 

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What’s Censorship?

27 Jan

Banned Books Display At the Lacey Library(Image by the Timberland Regional Library used under CC via)

 

Eeeny, meeny, miny, moe, catch a tiger by the toe.  If he hollers let him go…  That’s the version I learned.  My British friends caught a fishy by the toe.  My mother’s generation caught a n***** by the toe.  Were they wrong to alter it for us? 

Last week I applauded The Observer’s decision to remove a childish, poorly argued opinion piece from its website on the grounds that it did not meet their standards for style, while others hollered, “Censorship!”  This week, the German media is abuzz with its own debate over publishing standards as Thienemann Verlag has announced its decision to replace racist terms—such as “die Neger-Prinzessin”—in certain classic children’s books.  To which some are saying, Finally, while others are saying, Censorship!  And some are saying, The N-word isn’t racist!

This debate is older than the civil rights movement.  Pull up reviews of The Five Chinese Brothers on GoodReads and you’ll find nostalgic fans shouting, “Book burners!” at anyone who criticizes the illustrations.  The problem with this debate is that it usually attracts extreme narrow-mindedness on both sides. 

Some progressive activists do mistake witch hunting for spreading diversity awareness.  A few years ago feminist author Chris Lynch drew angry reactions from some women’s rights groups who demanded he change the name of his young adult series The He-Man Women-Haters Club.  But the books pick apart the machismo boys learn from pop culture and their fathers.  The mentality adopted by Lynch’s critics was so blunt that they couldn’t tell an opponent from an ally.  If the equality debate ends at what words are okay and which aren’t, regardless of context, it has failed.  Miserably.

But too many activists opposed to censorship demonstrate none of the openness and subtlety that are the building blocks of free thought and artistic integrity, which they purport to defend.  After reading Fahrenheit 451, an unparalleled tribute to the majesty of books, I got snagged in the inanity of Ray Bradbury’s hysterical afterword.  He begins by citing an editor who asked if he could put more female characters in The Martian Chronicles:

A few years before that I got a certain amount of mail concerning the same Martian book complaining the blacks in the book were Uncle Toms and why didn’t I ‘do them over’?  …  How did I react to all of the above? …  By ticketing the assembly of idiots to the far reaches of hell.  The point is obvious.  There is more than one way to burn a book.  Every minority… feels it has the will, the reason, the right to douse the kerosene, light the fuse…  For it is a mad world and it will get madder if we allow the minorities, be they dwarf or giant, orangutan or dolphin, nuclear-head or water conversationalist, pro-computerologist or Neo-Luddite, simpleton or sage to interfere with aesthetics.  The real world is the playing ground for each and every group to make or unmake laws.  But the tip of the nose of my book or stories or poems is where their rights end and my territorial imperatives begin, run and rule.  If Mormons do not like my play, let them write their own.  If the Irish hate my Dublin stories, let them rent typewriters.

That he dared them to back off and write their own books was a productive challenge, but his arrogance in damning them all to hell did not suggest he ever intended to read what they wrote.  (If he truly believed all art should be borne out of one person’s imagination alone, unscathed by anyone’s suggestions for improvement along the way, then he was probably the only writer in human history who never once accepted advice.)  This is not dialogue.  This is not open debate.  This is accusing your opponents of oppression in order to silence them.  This is failing to discern between book-burning and social critique.

Censorship is a serious issue.  Berlin’s memorial to the Nazi book-burning of 1933 is a window into an empty library.  It bears a plaque that reads, “Those who are capable of burning books are capable of burning people.”  No one should ever call for legally prohibiting the publication, sale, or existence of any sort of text if speech is to remain truly free.  Libraries should offer the public all they can eat and more.  But every publisher of children’s books should also be free to reject or revise what they release based on their own educational theories.  No one on earth believes any child of any age should read absolutely anything.  Releasing less hurtful editions of a story—while maintaining the right to publish the original—is not always censorship.  Indeed, automatically assuming it is betrays the sort of narrow-mindedness typical of censors.    

The leave-greatness-untouched argument ignores how many well-known stories have been severely distorted over time.  In the unadulterated Cinderella, the ugly stepsisters chop off pieces of their own feet to force them into the glass slipper.  The prince is fooled until he notices the slipper overflowing with blood.  Snow White forces the Evil Queen to dance in a pair of hot-iron shoes at her wedding until she drops dead.  As for Sleeping Beauty, do you think the medieval prince only kissed her as she slept?  It makes old-fashioned Disney look like a flaming liberal.  These violent versions are still around, but a lack of demand has nudged them out of the spotlight.  I wish the same fate upon racist versions of old children’s books. 

Of course, context is everything, and certain words can have many meanings.  Mark Twain used the N-word in Huckleberry Finn to portray a complex, admirable character who discredits racism and slavery.  But the N-word as it is used by Otfried Preußler—and Astrid Lindgren, and so many other white storytellers of the early and mid-20th century—evokes the colonialist stereotype of the savage who is either happy-go-lucky or bloodthirsty.  (In the words of Cracked.com, “Lesson Learned: What’s the deal with Africans?  If they’re not trying to eat it or throw a spear at it, they’re worshiping it as some sort of tribal deity, am I right?”)  Of course it’s absurd to think that every kid will automatically turn racist from reading this, but it’s also naïve to think such caricatures have no influence.  If childhood stories had no bearing on readers’ perceptions of minorities, then no one would ever promote children’s books that celebrate diversity.    

While I don’t object to students seeing racism or sexism or ableism in books, I strongly object to their being subjected to it before they’ve had any other exposure to more realistic depictions of the people these ideas dehumanize.  Psychologist Hartmut Kasten argues in the left-leaning newspaper Die Zeit that children ages four and up can read and should “learn that there are people with different skin colors, learn what we used to call them, what we call them today, and that there is such a thing as prejudice.”  But is it necessary when first introducing a child to someone who looks different to immediately hand them all the historical baggage of racism, too?  Doesn’t that suggest to them that people with different skin colors are always controversial?  Prejudice can spring from seeing a minority constantly portrayed either as a stereotype or as a victim of stereotyping. 

Prof. Kasten argues that expunging orientalism and other exotic tropes from children’s literature “destroys the imagination.”  But must the exotic always be colonialist just because that’s our tradition?  It is traditional in the Netherlands for St. Nicholas to be accompanied by a mischievous African man named Black Pete.  Some say he is supposed to be St. Nicholas’s servant, others say he is his slave.  For decades, white performers have donned blackface to portray him.  In recent years, some have replaced the blackface with multi-colored face paints, renaming the character “Rainbow Pete.”  This approach has long been popular in Suriname, a former Dutch colony with predominantly black citizenry.  Many are appalled to see an old tradition changed, but the St. Nicholas/Santa Claus/Kris Kringle/Father Christmas/Father Frost myth has been constantly evolving over time, forever an amalgam of various cultural influences.  Our nostalgia does not like us to admit this, but as said before, nostalgia is rarely honest, often revisionist.  And could Prof. Kasten argue that rainbow people are less imaginative than black slaves?         

And if children’s creativity is nurtured by stories from long ago in far off lands, why not make more of an effort to offer tales originating from those lands?  Indeed, in my workshops about teaching diversity awareness in pre-school, I promote translated folk tales and fairy tales such as Sense Pass King and Children of the Dragon to be read alongside Cinderella and Snow White.

 

The best way to combat uncreative stereotypes is to flood children’s libraries with beautiful stories that go deeper.  My hero Judy Blume agrees.  She is the most challenged author of all time in the United States.  Her brilliant books question everything from racism to religion to budding sexuality.  Most of her loudest critics usually argue that children under the age of 18 should never read about masturbation or wet dreams, despite how many 10-year-olds are already wise to it.  Blume wants parents who object to her stories to engage their children in discussions about them, which is a stance I support.  Passionately.  But is any child of any age old enough for such discussions?  Was it censorial of me to be stunned when I found Zehn kleine Negerlein lying around in a Berlin pre-school in 2010?

 

 
Die Zeit insists that if we revise anything that is in any way offensive, then we must revise everything.  (Which will lead to a ban on any disagreeable characters who are female or black or gay or disabled… )  This could be true if we were talking about bringing the law into it, but we’re not.  As far as the law is concerned, anyone is free to adapt any artwork once granted permission by the copyright holder.  Otfried Preußler’s publisher began replacing the N-word from his texts after receiving approval from the author’s daughter.  As hard as it may be for artists to swallow, artwork in the public domain is free to be toyed with as anyone sees fit.  Almost every generation releases the classics with new illustrations, whether it’s The Jungle Book or a children’s Bible. 

But to be fair, the modern illustrations bear the name of the modern illustrator, while a redacted version of an author’s text bears his.  Which feels somewhat mendacious.  Posthumous revisions would best be noted in an afterword discussing the original language and why the publisher does not wish to replicate it.   Alternatively, the cover could indicate that the story is a retelling.  Like so many of my friends, I grew up on abridged versions of Victorian classics such as Peter Pan, The Wizard of Oz, and Alice in Wonderland.  Only a handful of us went on to read the original texts when we were older.  Just as we went on to discover the original versions of “Eeeny, Meeny, Miny, Moe,” “Turkey in the Straw,” and the stanzas in the German national anthem that no one sings anymore.  

We should never seek to erase our xenophobic heritage – on the contrary, it is something we must own up to and learn from.  But it is no more appropriate for a young child to learn about Little Black Sambo than it is for them to learn about the rape version of Sleeping Beauty.  (Or the most graphic Mother Goose rhymes.  Or old television cartoons like these.)  She will be ready to hear it at some point.  Unfortunately, pinpointing the right point, the right moment, the right age will always be a problem.  Because racism is a problem.

 

 

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Props to The Observer for (Finally) Doing the Right Thing

20 Jan

a bit of controversy surrounding the transgender flag: san francisco (2012)A little background: A while ago a British journalist named Suzanne Moore, who specializes in women’s rights, made an offhand transphobic comment in an article about body image:  “We [women] are angry with ourselves for not being happier, not being loved properly and not having the ideal body shape – that of a Brazilian transsexual.”  There was an ensuing backlash from many in the trans community, especially on Twitter.  Her friend and fellow writer Julie Burchill penned a column in her defense titled, “Transsexuals Should Cut It Out,” which appeared last week in The Observer.  Without ever saying what exactly the trans activists in question had said to Moore that was so horrific, Burchill just called them names: “A bunch of dicks in chick’s clothing… bed-wetters in bad wigs… trannies…  They’re lucky I’m not calling them ‘shemales.’  Or shims.”

(Oh, really?  They’re lucky you don’t use the most dehumanizing terms you can think of?  Even though you just kind of did…  But I guess every member of every minority really should feel grateful to anyone who refrains from attacking their freak qualities with the worst slurs.  And in that case, thank you, Julie Burchill.  Thank you for not referring to people with dwarfism as midgets or Paralympic athletes as cripples.  I know the temptation is always there to vomit in disgust at people who are physically different and it takes a will of iron to keep the insults from dribbling out.  You are truly strong.  Anyone less magnanimous than you would mouth off.  You have shown yourself to be the paragon of generosity.  I for one am now going to get up every morning and feel grateful there are people like you saintly enough to walk down the street and not spit at those of us who truly belong in the circus.)

The Observer received a barrage of emails and commentary from horrified readers and promptly demonstrated that a small group of thoughtful citizens can indeed change the world when it pulled the column from its website.  The editors have issued this apology (emphasis mine):

This clearly fell outside what we might consider reasonable. The piece should not have been published in that form. I don’t want the Observer to be conducting debates on those terms or with that language. It was offensive, needlessly. We made a misjudgment and we apologise for that.

A newspaper shouldn’t reject writing that merely argues against trans rights or any sort of human rights.  As awful as bigotry is, dialogue between opposing sides is the only way to change minds and spur progress.  But any publication looking to host productive debate should always be able to discriminate between substantive reasoning and a pointless list of pejoratives.  I wouldn’t oppose printing Burchill’s piece because her argument was chauvinistic, but because she failed to be civil and because she wasn’t even addressing the trans activists’ stance.  She was simply snarking about their bodies.  And I’ve said it once, and I’ll say it again: If you can’t make your point without trashing traits your opponent has no choice about—their gender identity, ethnicity, biology, sexuality, or class background—then your argument doesn’t have a leg to stand on.  At worst, it’s abuse, and doesn’t even belong in high school.  (Indeed, that’s what anti-bullying policies are all about.)  At best, it’s meaningless.  (Would anyone try to convince the world to depose Saddam Hussein by ranting about the ugliness of his moustache?)

Upon first discovering Burchill’s piece last week, I assumed the only reason the editors would publish such an uninhibited temper tantrum was because they’re a business and believe feuds sell papers.  It is a relief to see now that they do not want their readers thinking that’s the kind of business they’re running.

Unsurprisingly, The Telegraph and others have bellowed, “CENSORSHIP!” and—you can see it coming a mile away—“PC police!” and have joined up with Burchill in republishing her piece.  They apparently have no qualms about profiting from the attention a semi-famous writer’s bad manners will grab.  Which is why it is so important to commend The Observer.  A week ago, I was deeply depressed by their descent into yellow journalism.  Their current endeavors to wipe off the self-inflicted stains are better late than never.

 

(Via)

 

 

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So Who Should The Cliques Make Fun Of Now?

6 Jan

Christina Red Carpet A new study claiming that Overweight and Class 1 Obese people have a lower mortality rate has been bouncing around the world since Thursday.  National Public Radio’s report seems to be the most comprehensive but hints at the two most extreme, polarized viewpoints:

Cosmetic: This is a victory for the overweight—now we can trash skinny people (again)!

Medical: If people hear about this, everyone will stop exercising and eating their vegetables and then everyone’s going to die!

Both views treat the public like infants who can’t possibly think for themselves.

Doctors are right to worry that a sizeable portion of the population will use this news as an excuse for whatever unhealthy habits they love.  This is why it is important to include the many possible factors skewing the results.  But many people will always cherry-pick whatever statistics suit their lifestyle or claim to be the exception to the rule.  I don’t have any political solutions for engaging with contrarians—whether we’re debating eating habits or global warming—but talking down to them and using scare tactics has a pretty high failure rate.

And from the disability rights perspective, there are exceptions to the rule when it comes to health.  Thousands of them.  As said before, a round belly is not always a sign of fat.  A bony body is not always a sign of an eating disorder.  Many forms of exercise can be more hazardous than beneficial to people with certain conditions.  And many life-threatening conditions are invisible.  Medical tests, not appearance, are always the most reliable indicators of health.  This robs us of the easy answers we crave and which facilitate public debate, but there has never been and never will be a one-size-fits-all health program for the 7 billion humans on the planet.

You and your doctor know better than anyone else if you are healthy or not.  If she says you are overweight but your genes and cholesterol levels put you at no risk for heart disease, she’s probably right.  If she says your weight is ideal but your eating habits put you at risk for malnutrition, she’s probably right.  And if her advice seems sound but her delivery makes you feel too ashamed to discuss it, go find someone with better social skills to treat you.  At the individual level, it’s no one else’s business.  Outside of the doctor’s office, it shouldn’t be any more socially acceptable to discuss someone else’s weight or waist size than it is to discuss their iron levels, sperm count, or cancer genes.

But beauty standards and health trends often go hand-in-hand.  And what really needs to go is the lookist idea that we’re all semi-licensed doctors who can diagnose people just by glancing at them and deciding how they measure up according to the latest medical research.  The reason we have a hard time letting this go is because it’s fun to point out others’ supposed weaknesses.  It’s self-elevating and validating to snicker that ours is the better body type because it calms our insecurities.  Beauty standards are cultural and constantly morphing throughout history, but they have always remained narrow.  (This is especially the case for women, though I sincerely apologize for not providing more research on men.)  Whether fawning over big breasts or flat tummies, public praise for certain body types has almost always been at the expense of others:

 

 
After decades of the Kate Moss heroin chic, Christina Hendricks (see above) of Mad Men has garnered lots of attention for her curves and this week’s study is likely to encourage her fans.  “Christina Hendricks is absolutely fabulous…,” says U.K. Equalities Minister Lynne Featherstone.  “We need more of these role models. There is such a sensation when there is a curvy role model.  It shouldn’t be so unusual.”  She is dead right that it shouldn’t be hard for curvy women to find sexy heroines who look like them in film and on television, just as skinny women or disabled women or women of any body type shouldn’t have to give up on ever seeing celebrities with figures like theirs.  But “Real women have curves!” is just as exclusionary as the catty comments about fat that incite eating disorders.  And when Esquire and the BBC celebrate Hendricks as “The Ideal Woman,” they mistake oppression for empowerment.

We can accept the idea that people of all sorts of different hair colors and lengths can be beautiful.  Will mainstream medicine and cosmetics ever be able to handle the idea that all sorts of different bodies can be healthy?  History says no.  But maybe it’s not naïve to hope. 

And what does Christina Hendricks have to say about all of this?  “I was working my butt off on [Mad Men] and then all anyone was talking about was my body.”

Touché.

 

 

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The Year In Review

30 Dec

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

 

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

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

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

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

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

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

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

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

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

 

 

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“ ‘I Am So Sorry’ Is A Start”

23 Dec

Last week 20 children and 7 women were murdered as I was celebrating my birthday.  Hearts leapt into throats and the urge to hug the little ones in our lives pushed the tears further down the cheeks.  As you absolutely undoubtedly know, the Internet has since been inundated with debates regarding gun control, violent video games, and even gender roles.  Amidst all the vitriol and special snowflake lecturing, it’s the lackluster discussions of psychiatric disorders that seem the least helpful.   

Too much of what has been said about mental illness has been too simplistic, too unscientific, too dismissive of the fact that accurately diagnosing a deceased individual often requires years of research.  Liza Long’s piece “I Am Adam Lanza’s Mother” is brazenly presumptuous and fraught with problems, while most of the outraged responses obscure their excellent points with a few too many personal jabs at her.  Of course everyone wants to know as soon as possible why 20 children were chosen as targets, but in this quest our commitment should be to accuracy, not promptness.

Although much of my work is in disability rights, I rarely write about mental illness or psychiatric disorders.  I have family members who are mentally ill and many friends who work in psychiatric fields, but I do not know nearly enough about it to speak with any authority and all too often hearsay is copy-and-pasted as fact.  Genuine concern is sometimes obscured by sick fascination.  The term “mentally ill” is a gigantic umbrella that covers everything from paranoid schizophrenia to anorexia nervosa to hypochondria.  Those with psychiatric disorders make up what is perhaps the most misunderstood and diverse minority on earth.  Casually tossing out easy-reading explanations before the news cycle gets bored and moves on usually does them more harm than good. 

I’ve been reading as much as I can about the complexities of Asperger’s syndrome, schizophrenia, psychopathy, and the countless articles reminding everyone that most mentally ill people are far more likely to be the victims of violence rather than the perpetrators.  I plan on getting my hands on a copy of Richard J. McNally’s What Is Mental Illness? in the new year.  Meanwhile, I can only hope that news readers and viewers do not perpetuate the media’s easy-answer approach to something as complex as medicine.

And while filtering out the less helpful material, I found two beautifully honest pieces by Rev. Emily C. Heath and Linton Weeks about what to say to grieving parents.  People in bereavement are traditionally not classified as minorities, but fear, misconceptions, and snap judgments usually surround them.  (I wrote earlier this year about what loss has taught me about the complexities of grief and the prejudices I used to hold against it.)  As we continue the debates aimed at preventing future tragedies, we should learn how to deal with what this tragedy has done to those closest to it.

 

 

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Degenerates, Nazis, & the U.N.

16 Dec

(Via)

 

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

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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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Dragging Entertainment Into the 21st Century

21 Oct

(Via)

 

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

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

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

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

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

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

 

 

   

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It’s So Easy To Take Peace for Granted

14 Oct

(Via)

 

The European Union has won the Nobel Peace Prize amidst the hardest year it has faced since its inception.  The E.U. founders certainly had no idea what they were building when they did—the goal was simply to control German coal and steel so that Germany could never rebuild its war machine—and the ensuing peace among member nations that is now over 60 years old was not something anyone would have bet on at the time.  Nor would anyone have imagined that E.U. membership would later mean abolition of the death penalty, but it has. 

I detest the austerity policy in place now during the economic crisis, but the E.U. is more than that, just as the U.S. is more than Wall Street.  The Euro Generation that emerged 15 years ago doesn’t identify with austerity but with European peace, universal healthcare, the welfare state, religion out of politics, and the determination to simultaneously open borders and promote multi-lingualism while protecting minority languages and cultures.  To them, nationalism is pointless at best and cataclysmic at worst.

Of course, bureaucracies are never as pretty as the ideals behind them.  And some of the criticism this week has been fair.  (Der Spiegel claims that awarding former E.U. leaders such as Jacques Delors would have more effectively spotlighted the ideals of the European peace project.)  A lot of the criticism has been ridiculous, if not offensive.  (Many on the far left are echoing the sentiments of critics on the far right, comparing police brutality in Greece and Spain to World War II.  Not helpful.)  The debate should keep going, but I’m personally taking the moment to remember how I felt 13 years ago when I read Eddie Izzard campaigning against Europhobia in the UK:

“I believe that we are on to something really good here, if it means that we stop rolling tanks across one another’s borders and stop killing each other. There are 800 million of us Europeans and we’ve been killing each other for centuries.”

 

 

 

 

 

 

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What’s Privilege?

7 Oct

(Via)

 

This week I led a workshop about teaching pre-school children about diversity.  I started by asking the teachers what privilege is, and I got the same answer a family member had given just days before: “Privilege is what people who are really lucky have.  Like being born into a rich family, going to nice schools, or even just being exceptionally good-looking and therefore having an easier time of it.”

It is interesting that so many seem to be under the impression that privilege and luck are what extremely well-off people have.  Privilege does belong to anyone whose place in society is considered “better than normal,” but also to anyone whose place is considered simply “normal.”  As said before, privilege is granted by society to certain people based on things we had absolutely nothing to do with: our gender identity, our ethnicity, our sexuality, our physical traits, our mental capabilities, our class background.  That is why any privilege—like any form of disenfranchisement—is unjust.     

In the workshop, I read off the following list of statements that illustrate privilege to the participants who were lined up in a row.  (It’s a hodge-podge of original statements and ones taken from privilege activities created by Peggy McIntosh, Earlham College, and the Head Start Program.)  Anyone for whom the statement was true could step forward.  Anyone else had to stay behind.  All of us in the group stepped forward at least half the time.  You can see for yourself where you would have ended up: 

 1)      I always felt safe in my neighborhood as a child.

2)      If I wish to, I can be with people of my race/ethnicity most of the time.

3)      I never have to plan how to reveal my sexual orientation or gender identity to friends, family, or colleagues.  It’s assumed.

4)      I can go out in public without being stared at.

5)      I participated in extracurricular activities as a child (swimming, football, ballet, piano, yoga, painting, etc.).

6)      I can easily buy posters, picture books, dolls, toys and greeting cards featuring people of my race.

7)      I can wear a skirt, a dress, jeans, or pants, without anyone staring or asking me to explain my choice.

8)      In school, I could always take part in whatever activity or games the class was assigned.

9)      None of my close friends or family has ever been arrested.

10)  Rarely have I been asked to explain why my body looks the way it does or why I move or speak the way I do.

11)  I have never worried that I might not be able to afford food.

12)  When I learned about “civilization” in school, I was shown that people with my skin color made it what it is.

13)  I have never heard of someone who looks like me being given up for adoption or aborted because of it.

14)  Who I am attracted to is not considered a political issue.

15)  I attended a private school.

16)  I am never asked to speak for everyone in my ethnic group.

17)  I can find colleges that have many people from my class background as students.

18)  I can criticize our government without being seen as an outsider.

19)  My family never had to move for financial reasons.

20)  If I am assertive, it is never assumed that it comes from my need to “compensate” or struggle with my identity.

21)  When I was a child, I never had to help my parents at their workplace regularly.

22)  When I talk about my sexuality (such as joking or talking about relationships), I will not be accused of “pushing” my sexuality on others.

23)  If I make a mistake or get into trouble, I am usually judged as an individual, not as an example of people who look like me.

24)  I can go for months without being called straight, heterosexual, or cis.

25)  I can use public facilities (store shelves, desks, cars, buses, restrooms, and train or plane seats) or standard materials (books, scissors, computers, televisions) without needing help or adaptations.

26)  When I dress for a formal event, I don’t worry about being accused of looking too dolled up or not pretty enough.

27)  As a child, I never had to help care for a family member.

28)  When I watch family advertisements for food, medicine, clothing, games and toys, the families on TV usually look like mine.

29)  I grew up feeling I could be whoever or whatever I wanted.

30)  I have never been asked, “What do [people like] you like to be called?”

 

 

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Playing Disabled

30 Sep

Miracle Worker

(Image by cchauvet used under CC license via)

 

Snow White and the Huntsman is out on DVD in Europe tomorrow. Unlike in most other Snow White films, the seven dwarfs are portrayed by average-sized actors, their bodies altered by digital manipulation. No one in the dwarf community is pleased about this.  Little People of America issued a statement criticizing the filmmakers’ failure to give priority to performers with dwarfism, while Warwick Davis argued, “It is not acceptable to ‘black up’ as a white actor, so why should it be acceptable to ‘shrink’ an actor to play a dwarf?” 

I don’t believe digitally generated dwarfism is on par with blackface and all that evokes, but it’s not too far off because there is a long tradition in cinema and theater of socially privileged actors portraying socially marginalized characters. And never the other way around. Blackface is a particularly hideous blemish on the history of entertainment because it was almost always used for mockery. Yellowface has a similarly horrid history: Until 1948, anti-miscegenation laws in the U.S. banned actors of different ethnicities from kissing onscreen, so whenever a white actor portrayed an Asian leading man, Anna May Wong knew the role of the heroine was off limits to her, despite her being the most successful Chinese-American actress of the era. Meanwhile, as noted before, the circus freak show tradition that caricatures people with disabilities is still going strong today. 

To be fair, Snow White and the Huntsman does not create the illusion of dwarfism in order to mock it. This is why, to me, the blackface comparison seems overblown.  (A more apt analogy to blackface would be an actor inhaling helium to play a dwarf, as David Hyde Pierce did for laughs on an episode of Frasier years ago.) When a character matter-of-factly has a disability and the performer simulates their body type with artifice, is this not comparable to any sort of makeup or costumes? Danny Woodburn (whom you might know from Seinfeld) discussed it in an excellent interview on The Patt Morrison Show in June:

Directors, producers have every right to cast who they want to cast.  I just think this is something that merits discussion when the disability community—not just the little people community but the disability community—is so underrepresented in the film and television industry…

Others without disability portraying people with disability.  When producers, directors don’t actively seek performers with disability—[and they’d have to] because a lot of those performers don’t have equal access to casting, don’t have equal access to representation—when they don’t actively seek out those performers, then there’s a real slight against our society, I believe…

This is about making a stand so that there’s at least some due diligence… When you have a community of disabled that is about twenty percent of the population and less than one percent of disabled actors appear on TV. And some of the disabled characters, many of them are not portrayed by disabled actors.

Woodburn and Little People of America raised this issue ten years ago when Peter Jackson announced that he would cast only average-sized actors in The Lord of the Rings. As noted before, part of me was glad to see those magical creatures distanced from real-life people with skeletal dysplasias, but if Jackson had chosen to use dwarf performers to portray the Hobbits or the Dwarves, might someone like Woodburn be as famous as Elijah Wood is today? It’s hard to say. Famous actors create box office draw. Almost no famous actors are disabled and almost no disabled actors are famous. And that’s the problem.

If digital manipulation and theater makeup are someday used to expand roles to minority performers, allowing actors of any body type or ability to play the Huntsman or Prince Charming, it will then lose its exclusionary feel. I adored Snow White and the Seven Dwarfs growing up and, even though I was the only kid with dwarfism, I always portrayed the princess in the living room productions put on for my parents and their friends. But cinema has almost never swung that way. There is no history of ethnic minorities portraying famous white characters or disabled performers portraying physiotypical heroes and heroines. Plenty of ambulatory men have sat in wheelchairs to portray FDR, but no disabled man has been cast as JFK. And that stings a bit.

And what stings even more is the way in which privileged actors so often earn automatic praise for portraying minority characters in epic films, as if all minorities are opaque, mystical people only geniuses could begin to understand. John Malkovich as a mentally disabled man in Of Men and Men, Colin Firth as stammering King George VI, and Patty Duke, Melissa Gilbert and more recently Abigail Breslin as Helen Keller have all been lauded for their performances. They are all fine actors who have proven a wide range of talent, and the stories they tell are truly moving. But the public’s nearly kneejerk assumption that a minority role is a feat of greatness for a privileged actor can feel very condescending. 

In the very bizarre, direct-to-DVD film Tiptoes, Gary Oldman was digitally manipulated to take the role of the leading man with dwarfism. Peter Dinklage, who played the comedic supporting role (and, in my opinion, the only good moments in the film), said: “There was some flak. ‘Why would you put Gary Oldman on his knees? That’s almost like blackface.’ And I have my own opinions about political correctness, but I was just like, ‘It’s Gary Oldman. He can do whatever he wants.’ ” 

Fair enough, but when he was sappily introduced in the trailer as playing “the role of a lifetime,” I almost lost my lunch.


 

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Biology and “The Imprecision of Stereotypes”

16 Sep

 

This week the British newspaper The Telegraph asks:

Ever wondered why men can’t seem to tastefully decorate a house?  Or have a tendency for dressing in clothes that clash?  And why, for that matter, can’t women seem to hack it at computer games?  Now scientists claim to have discovered the reason: the sexes see differently.  Women are better able to tell fine differences between colors, but men are better at keeping an eye on rapidly moving objects, they say.

Professor Israel Abramov and colleagues at the City University of New York reached their conclusions after testing the sight of students and staff, all over 16, at two colleges…

The authors wrote: “Across most of the visible spectrum males require a slightly longer wavelength than do females in order to experience the same hue.”  So, a man would perceive a turquoise vase, for instance, as being a little more blue than a woman who was looking at it too.

Abramov, professor of cognition, admitted they currently had “no idea” about how sex influenced color perception.  However, writing in the journal Biology of Sex Differences, he said it seemed “reasonable to postulate” that differences in testosterone levels were responsible…

Men can’t perceive colors as deftly as women can.  That’s why all the great Western painters like Van Gogh and Cézanne and Leonardo and Picasso and Renoir and Monet and Munch and Vermeer and Kandinsky and Matisse are female.  And all the major fashion designers of the last century like Hugo Boss and Karl Lagerfeld and Gianni Versace and Giorgio Armani and Calvin Klein and Ralph Lauren were women.  Oh, wait. 

Maybe the study meant to say testosterone only triggers color ineptitude when male ears register the words “home decorating.”  Or that male color perception improves when money is involved. 

Or maybe The Telegraph author was exaggerating just a bit.  Tacking jazzy headlines onto reports of scientific studies are all the rage these days, no matter how much they distort the findings.  In June, Medical Daily ran an article under the title, “Racism Is Innate.”  Innate means, according to my biologist father, “present at birth,” so this seemed like a call to toss all those No child is born a racist buttons onto the trash heap.  Except that anyone who bothered to read the article would discover that the study simply concluded that brain scans of adults show simultaneous activity in the centers that process fear and emotion and those that differentiate between familiar and unfamiliar faces.  The idea that fear of the Other can be neurologically mapped lends itself to a great deal of speculation and debate, but nowhere did the study claim that racism is present at birth. 

Such truth-stretching borders on mendacity, yet it pervades the science sections of so many newspapers.  Scientific studies are supposed to be free of bias, but the news media is severely biased toward publishing whatever will grab readers’ attention.  As several researchers have pointed out, differences between the sexes are currently considered a much more interesting discovery than no difference, so publishers often remain silent on an issue until they find a study that provides the juicier headline, no matter how numerous the contradicting studies are.  When the market is left to decide, it chooses salability over comprehensiveness.

Such an irresponsible approach to science results in a gravely misinformed public.  I can’t tell you how many people have repeated the claim that our modern Western female beauty standards are “natural” because a round waist resembles pregnancy and triggers the male fear of cuckoldry.  No one seems to remember that several cross–cultural studies discredited this idea years ago.  But how can anyone be expected to remember something the media chose not to promote in the first place? 

And forget about waiting until the study is corroborated.  In 2007, The Times ran a headline claiming that women are naturally drawn to the color pink because of our savannah foremothers’ need to gather berries while the men hunted.  The Times published the study without consulting any historians, who eventually pointed out that pink was considered a manly color as recently as 1918 until fashion trends changed.  Oops.

This doesn’t mean that we should, as Mitt Romney has demanded, “keep science out of politics.”  Science is impartiality and corroboration and the best method we have for sorting facts from wishful thinking—for preventing our emotional, egotistical needs from weakening our objectivity.  To me, science is the most humbling force in the universe because it demands we always admit what we do not know.  It prevents hasty conclusions based on flimsy evidence, gut feelings, and political agendas.  It questions crude stereotypes and discovers more complex structures. 

But according to pop science reporters and the researchers they choose to spotlight, nearly every single modern joke about the differences between men and women stems from millennia-old evolutionary adaptations.  (Indeed, the Telegraph article claims that the female proclivity for detecting color helped our foremothers with gathering berries.  Always with the damn berries… )  As stated in the graphic below, such reports all too often suggest that prehistoric society on the African savannah looked just like something Don Draper or Phyllis Schlafly would have designed:

Men hunt, women nest, and every macho social pattern we see today has been passed down to us from our prehistoric ancestors.  Even though historians find that these patterns, like our racial categories, are barely more than two centuries old, if that.  And that the gender binary is far from universal.  Misinterpreting scientific findings is just as dire as ignoring them. 

When it comes to what women and men can and can’t do, neuroscientist Lise Eliot notes, “Expectations are crucial.”  When boys and young men grow up in a culture that mocks their supposed incompetence in all things domestic (“Guys don’t do that!”), it comes as no surprise that only the most self-confident will pursue any interest they have.  Meanwhile, studies show girls perform as well as boys do in math and science until they reach puberty.  Maybe the onset of menstruation paralyzes our visual-spatial intelligence because we’ve got to get picking those berries, or maybe girls pick up on the not-so-subtle message that guys think coquettish beauty is more important than nerdy brains in the dating game.  (For more details on the sexism faced by aspiring female scientists, see Cordelia Fine’s excellent book, Delusions of Gender.)  In her research, Dr. Eliot finds only two indisputable neurological differences between males and females:

1) Male brains are 8% to 11% larger than females’.

2) Female brains reach maturation earlier than male brains. 

All other neurological studies that find major differences between the sexes are studies of adults: i.e., the people most shaped by their culture and society.  Only cross-cultural studies of adults can isolate nurture from nature.  In any case, Eliot is a proponent of neuroplasticity, the idea that the pathways and synapses of the brain change depending upon its environment and the neural processes and behaviors it engages in.  In other words, painting or gaming from an early age or frequently throughout your life will condition your brain to do these tasks and related ones well.  It explains why the gender roles of a given time and place are so powerful—why mastering unfamiliar tasks is an uphill climb for men and women but also why countries committed to equality have the narrowest gender gaps. 

“Plasticity is the basis for all learning and the best hope for recovery after injury,” Eliot writes.  “Simply put, your brain is what you do with it.”  For more, see her brilliant parenting book, Pink Brain, Blue Brain: How Small Differences Grow into Troublesome Gaps—and What We Can Do About It.   

But I’ll never believe that a neuroscientist has all the answers.  I live in a country that showed the world the dangers of hastily trying to trace all social patterns back to biology.  As a result, the media here in Germany is usually much more reticent to casually toss around arguments like those in The Telegraph or The Times or Medical Daily.  Natural scientists have made discoveries like neuroplasticity and limb-lengthening that are crucial to progress, but social scientists have discovered that equality and empathy are crucial to any society that values peace and respect over power and greed. 

Or, in other words.

 

 

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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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