Tag Archives: Language

Can Hobbits Be Human?

12 Jun

homo_floresiensis(Image by Ryan Somma used under CC 2.0 via)
 
Homo floresiensis or “Florian Man” is an extinct species of hominin, named after the Indonesian isle of Flores on which remains have been found. Its precise evolutionary origin and relation to humans remains an issue of ongoing debate, most recently continued in this week’s issue of Nature. Reports in the mainstream media refer to Homo floresiensis not only as “little humans” but as “Hobbits,” on account of their characteristic short stature.

Wikipedia attributes this nickname to the ubiquity of Tolkien fans in the scientific community, while the Tolkien estate has sued scientists for using the name in lectures and documentaries on the grounds of copyright infringement. Despite court rulings, the pop science media as well as the Smithsonian National Museum of Natural History continue to refer to Homo floresiensis as Hobbits.

There are plenty of cases of scientists tending toward the glib rather than the professional when it comes to naming. The famous specimen of Australopithecus afarensis was dubbed “Lucy” after the Beatles song that was playing on the archaeologists’ radio as the remains were discovered. But Homo floresiensis qualifies as having dwarfism according to scientific, medical and social definitions. Dwarfism can be identified in humans, animals, and plants, but referring to them as “Hobbits” implies an Otherness that is non-human. Does this work as long as they remain mere relatives of humans, and not fully human?

Plenty will protest that “dwarfism” itself also has its origins in mythology. Which is why there are those who seek to dissociate all human medical conditions from fantasy jargon. The German Federal Association for People of Short Stature never uses “dwarf” (“Zwerg”) to avoid connotations brought on by fairy tales. The Intersex Society of North America rejects the ancient Greek term “hermaphrodite” because it spreads scientific misinformation and attracts fetishists.

Yet others embrace these terms in an effort to confront the confusion brought on by the mythological terms head-on. It is a means of declaring: We are the freaks you read and write about. Why are you so interested in making up stories about us? Are you willing to listen to our real-life stories? Humans with dwarfism have been around a lot longer than any of our known myths and legends, regardless of how we define Homo floresiensis.

Many have rightfully argued that when it comes to grouping people, labels often cause more trouble than they’re worth. But others also correctly argue that the words we use to talk about something or someone demonstrably shape the way we think about them. And the desire to study Homo floresiensis and all humanoids is rooted in a desire to understand ourselves and our place in the world.

 

 

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Curiosity Kills the Rat

19 Oct

From the Archives

 

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

— Michael Franti

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

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

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

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

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

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

 

 

Originally posted May 19, 2012

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Content Warnings and Microaggressions

20 Sep

Grunge Warning Sign - Do Not Read This Sign

(Image by Nicolas Raymond used under CC license via)

 

There’s a heated debate going over at The Atlantic over trigger warnings and microaggressions. For those less familiar with online minority rights debates, trigger warnings originated as labels for video or texts depicting graphic violence, often sexual, that could be triggering for survivors of assault suffering from PTSD. They have since evolved into “content warnings,” used to label any video or text containing arguments, comments, humor or images that marginalize minorities. I most recently ran into one preceding a beer ad in which two brewers tried to joke about never wanting to have to do anything so humiliating as dressing in drag in the red-light district in order to earn money.

Jonathan Haidt and Greg Lukianoff have argued that content warnings have led to “The Coddling of the American Mind,” a culture of silencing, wherein too many are afraid to initiate dialogue on these issues, lest they offend. They criticize restrictive speech codes and trigger warnings, and suggest universities offer students free training in cognitive behavioral therapy in order to “tone down the perpetual state of outrage that seems to engulf some colleges these days, allowing students’ minds to open more widely to new ideas and new people.”

“Microaggressions” is a term invented in 1970 by Harvard professor Charles M. Pierce to refer to comments or actions that are usually not intended as aggressive or demeaning but nevertheless do contribute to the marginalizing of minorities. Examples would be certain physicians being addressed as “Nurse” at the workplace. Or nurses, secretaries, cashiers, and storage room workers constantly hearing the widespread Western belief that low-skilled jobs deserve a low degree of respect. Or men still being expected to prove their worth through their career and never their emotional fulfillment. Or lesbians being asked if they’ve had “real sex.” Or anyone hearing from magazines, sitcoms or even loved ones that body types like theirs are something to avoid ending up with or hooking up with.

Microaggressions are the essence of insensitivity and they highlight the widespread nature of many prejudices about minorities. I analyze them all the time on this blog, without labeling them as such. Finding blogs that feature them in list-form can be done with little effort.

Citing a sociological study by professors Bradley Campbell and Jason Manning, Connor Friedersdorf has argued that calling out microaggressions on social media sites has led to a culture of victimhood, wherein the emotions of the offended always matter more than the perpetrator’s intentions. Victimhood culture is “characterized by concern with status and sensitivity to slight combined with a heavy reliance on third parties. People are intolerant of insults, even if unintentional, and react by bringing them to the attention of authorities or to the public at large.”

Cue the overemotion. Simba Runyowa rightly rebuts that many of Friedersdorf’s examples of hypersensitivity are cherrypicked, but then goes on to deny that anyone would ever want to be seen as a victim. (Not only do most petitioning groups—whether the majority or the minority—claim to be the victim of the other side’s moral failings and undeserved power, but it appears he has never tried to explain what it’s like to have a rare condition, only to be interrupted by the insistence, “I think I have that, too!”) On the other side, Haidt, Lukianoff and Friedersdorf have attracted plenty of support from those who are only too happy to believe that college campuses and the blogosphere today are ruled by the PC police, rendering such places far worse than Stalinist Russia.

I rarely issue content warnings on videos or quotations or any examples of bigotry I analyze on this blog. My primary reason is that a majority of the content we consume every day is arguably misogynistic or heteronormative or ableist or racist or classist or lookist. This does not at all mean that we should not address those problems, but demanding “warnings” on whatever has marginalized me leaves me open to criticism for not doing the same for all the other injustices I may not see.  As both a Beatles fan and a social justice blogger, I will always prefer to read or hear a comprehensive critique of John Lennon’s ableism than to see warnings on his biographies.

And I don’t label microaggressions as such because I agree with Friedersdorf that the word seems at odds with its definition. Insensitivity can be very hurtful. It can contribute to feelings of alienation by functioning as a reminder of how millions of people might think of you. But it is not aggressive. Highlighting, questioning and debating ubiquitous prejudices, stereotypes and traditions is crucial to human progress. Mistaking ignorance for hostility, however, is an obstacle to it.

Would it be accurate and productive to post something like this?

Microaggression: Having to hear yet another parent talk about how thrilled they are to have been able to give birth “naturally.”

(Avoiding C-section is never an option for women with achondroplasia like me.)  And would it be accurate and productive to something like post this?

Microaggression: Having to hear yet another childfree blogger brag about how great it is to have the time and energy to do things I’ll never be able to do like hiking or biking, let alone if I have kids.

Would it be more practical to tweet such complaints rather than pen an extensive article about the intricacies of the problem because few have time to read the particulars of considering parenthood with achondroplasia? Would posting them on a site featuring microaggressions serve as a much-needed wake-up call, convincing the perpetrators to see the issue from my perspective, or would it put them on the defensive? Would it spark dialogue or shut it down? Are the comments that marginalize my experience veritably aggressive? Feel free to share your thoughts in the comments.

But whether we think people on either side of the majority vs. minority debates are too sensitive or insensitive, we should be aiming for dialogue over exclamation points.

 

 

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What Do You Think of When You See the Word “Healthy”?

6 Sep

Up close Star makeup mac, urban decay(Image by Courtney Rhodes used under CC 2.0 via)
 
In late 2013, journalist Katie Waldman examined the juicing trend, which was cropping up in the corners of Western society where there is a heavy focus on modern notions of “natural and organic” (think anywhere from Berlin’s Prenzlauer Berg to Burlington, Vermont and Berkeley, California) as well as in those where people competitively strive to follow the latest fashions in health and beauty (think the high-earning sectors of London, Manhattan or Los Angeles). Lifestyle writers have declared two years later that juicing has staying power, despite Waldman’s disturbing findings. Along with little to no evidence that cleansing the body with juice can be physically beneficial, she revealed that the language of most detox diets echoes the language used by those struggling with disordered eating – i.e., the idea that most of what the masses eat is on par with poison and you’re a bad person if you don’t purge it. She writes:

After days of googling, I still have no idea WTF a toxin is… Cleansing acolytes use the word toxin loosely, as a metaphor for our lapsed lifestyles…. The problem with this way of thinking is that food and weight are not matters of morality. Thin is not “good,” carbs are not “bad,” and in a world of actual pressing political and social ills, your dinner plate should not be the ground zero of your ethical renewal.

I’m neither a supporter nor an opponent of juicing in particular. Anyone should drink whatever they want to drink. But Waldman made a fantastic point about the way the upper and middle classes in the West so often believe one’s health to be a sign of one’s morality.

This idea is hardly new. The eugenics craze of the 19th and 20th centuries—that culminated with the Nazis exterminating “degenerates”—involved Fitter Families contests held at county fairs wherein judges handed out trophies to those deemed to have the best heritage, skin color, and tooth measurements. Professor Alan Levinovitz argues in Religion Dispatches that these attitudes have survived on into the present, altered only ever so slightly: “The sad thing is, it’s really easy to judge people on the basis of what they look like. We have this problem with race. In the same way, it’s really easy to look at someone who’s obese and say, ‘Oh look at that person, they’re not living as good a life as I am. They’re not as good on the inside because I can tell their outside isn’t good either.’ ”

Do we as a culture believe that being “healthy” is about appearance? Dieting often dictates that it’s about behaviors measurable through appearance. Psychologists agree to the extent that their notions of “healthy” are about behavior, but they also frequently intersect with notions of being “good.” But is being “healthy” about being brave, honest, generous and humble? Physicians would generally argue it’s about staving off death. Right-to-die advocates would argue it’s about quality of life over longevity. Is being healthy a matter of what scientists decide? Ed Cara found earlier this year that weight loss does not lead to happiness. Is happiness a measure of being healthy? Or are you only healthy if you suffer for it? Concepts of “healthy” vary vastly from person to person, and across cultures. Is that healthy?

In The Princess Bride—probably the Internet’s second-most quoted source after Wikipedia—the hero cautions, “Life is pain. Anyone who says differently is selling something.”

Yet the villain says, “Get some rest. If you haven’t got your health, you haven’t got anything.”

Whether you agree with any or none of the above, leave me your thoughts on the meaning of “healthy” either in the comments or via an e-mail to paintingonscars[at]gmail.com

 

 

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For Anyone Who Has Ever Been Asked “So What Do You Like to Be Called?”

2 Aug


 

Leaving you this summer day with some astute observations from comedian Hari Kondabolu about the power of social constructs, or rather, our strong attachment to them.

 

 

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High Schools Fight to Keep Midgets As Mascots

12 Jul

(Via)

 

Calling someone what they wish to be called should be a no-brainer but is often met with resistance. Asking someone else to change their name in deference to someone else, however, sometimes seems harder than limb-lengthening.

Little People of America is holding its annual national conference this week in St. Louis and has voiced their offense at the name of a local high school sports team across the river in Freeburg, Illinois. The school is one of several across the United States whose sports teams are named the Midgets and LPA would like this to change. Freeburg school superintendent Andrew Lehman does not expect to see the mascot altered any time soon.  “That term can be very subjective. What’s offensive to one person or group of people is going to have a very different meaning to other people,” he states.

You can sign the Little People of America petition here, or you can add your name to the list of 3,446+ supporters arguing to keep it. Author of the latter petition Jared Fricke explains:

It is time in America to stand up and say words do not create evil and if we allow a few short minded people to dictate what is right and wrong then we will live in a world full of fear. Freeburg is not a place of hate, and as Americans we have the right to use the Midgets as a mascot because it is the foundation of what it meant to come from Freeburg. We are a small town, but that does not stop us from achieving great things.

In 1997, the board of education at a high school in Dickinson, North Dakota voted to the drop their Midget mascot, but was met with such a punitive backlash—costing three board members their jobs—that it was swiftly reinstated.

The Dickinson name was given to the team by a sportswriter in the 1920s. The Freeburg superintendent claims their mascot originated in the 1930s. Bestowing nicknames based on supposed physiological shortcomings as a form of ribbing was common in the U.S. in those days. Major League Baseball abounded with players named “Red,” “Pudge,” “Curly,” “Pinky,” “Shorty,” and “Lefty.” In Fried Green Tomatoes, set in 1930s Alabama, the protagonist starts calling her nephew “Stump” after he loses his arm in an accident. The seven dwarfs in Disney’s 1937 film—Happy, Sleepy, Sneezy, Grumpy, Dopey, Bashful and Doc—were the final names chosen out of a pool of suggestions that included Jumpy, Deafy, Dizzy, Hickey, Wheezy, Baldy, Gabby, Nifty, Sniffy, Swift, Lazy, Puffy, Stuffy, Tubby, Shorty and Burpy.

Caricaturing minorities in mascots and logos was also common on both sides of the Atlantic. Sam Greenspan at 11points has documented a handful of other jaw-dropping mascots that only recently underwent name changes, from the Frisco Coons to the Pekin Chinks. Those my age and older who grew up in the U.S. can easily recall the mammy origins of Aunt Jemima, while those who grew up in Finland are equally well acquainted with the first incarnation of Fazer black licorice. While some embarrassing examples endure, most of these corporate logos have been altered within my lifetime and with much greater ease than the sports mascots like the Washington Redskins, the Cleveland Indians, and the Freeburg Midgets. Why?

The corporate world is very invested in what other people think because their primary concern is the bottom line. The world of competitive team sports, however, both engenders and depends on a sense of community identity, the ultimate Us vs. Them mentality. Bowing to outside pressure is anathema to this, as one signatory of Fricke’s petition argues:

This group is not affected on a daily by our mastcot [sic] ever!!! They come to our area and are just looking for a reason to be in the news. It’s a source of pride in Freeburg and is something needs to stay as a part of our high school’s tradition. Midget Pride baby!

Let’s give the mascot’s supporters the benefit of the doubt for the moment and assume they only mean well by shouting “Midget Pride!” Let’s ignore the slur status of the M-word and consider whether Little People of America should not perhaps focus their indignation on more direct forms of de-humanization, like dwarf-tossing and rejection by family. What’s so bad about a small town thinking dwarfism is the perfect metaphor for their tiny-but-tough identity after all?

It’s an important question for high school students to ponder. I began this blog with a post about why I find the little-in-size-but-large-in-spirit slogan inherently demeaning. And small town students would only benefit from asking themselves, “Do we truly know what it’s like to be a real-life midget?” And from considering the issue of appropriation as it was summed up by a friend of mine: “If you actually wish you had a freak flag to wave, then you obviously don’t know what you’re talking about because you don’t know what it’s really like to be widely seen as a freak.”

Indeed, a very common phase in adolescence involves trying on different identities to figure out your own. Self-actualization relies on it. But after a certain age, stagnating in this phase becomes a sign of immaturity. I don’t fault teenagers who appropriate identities via shallow, melodramatic thinking—like mixing a love of the macabre with murder at Columbine, or thinking it’s touching instead of terrible to compete for Olympic gold to the tune of Schindler’s List—but I do fault any of their adult role models who do.

As a place of higher learning, I’d be most pleased to see the school resist the urge to stand united and firm against the PC police and instead encourage their student body to debate and reflect upon why those of us with dwarfism might not feel honored by their mascot. They should not agree with us right away. They should not mutter Whatever and begrudgingly bow to LPA’s request. But instead reflect on the many complex issues it brings up for us, in all seriousness and with sincerity.

 
 

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Why Do Names for Minorities Keep Changing?

14 Jun

midget not wanted(Image by CN used under CC 2.0 via)

I’ve been writing about the word “midget” more than usual this month, thanks to an Irish public service announcement and then GoogleTranslate. The taboo nature of the word in the dwarf community is almost amusing when we consider that the world’s largest dwarf advocacy organization, Little People of America, was originally named Midgets of America. No lie. (You can read about why I feel that the change was hardly an improvement here and why others do as well here.)

Minority names have been changing a lot throughout the last century. This social pattern has been dubbed the Euphemism Treadmill by psychologist Stephen Pinker. Toni Morrison has pointed out that it’s all about power: “The definers want the power to name. And the defined are now taking that power away from them.” But as names for minorities keep changing, many laypeople keep complaining about the seemingly convoluted nature of of it all:  

“Can’t they just stick to a name and be done with it?”

“Why should I have to be careful if they’re going to be so capricious about it?”

“It seems like they’re just looking for us to slip up so they can call us out!”

It’s not hard to understand where this frustration comes from. No one likes being accused of insensitivity for using a word they had thought was in fact accurate and innocuous. But rarely does anyone ask why the names change.

In 2010, President Obama signed Rosa’s Law, classifying “intellectually disabled” as the official government term to describe what in my childhood was referred to as “mentally retarded.” “Mentally challenged” and “mentally impaired” were other terms suggested and used in PC circles in the 1990s. Already I can sense a good number of my readers wondering whether these changes were truly necessary. I can also sense, however, that few would wonder whether it was necessary to abandon the terms “idiots,” “morons,” and “imbeciles” to refer to such people.

“Idiot,” “moron,” “imbecile,”  and “dumb” were all medical terms before they were insults, used by doctors and psychologists across the Anglophone world. But gradually laypeople started using them to disparage any sort of person they disagreed with. And now this is their only purpose. Instead of getting all of us to stop using these words as insults, the medical minorities have stopped accepting them as official names.

The names for psychiatric disorders and developmental disabilities are particularly prone to being re-appropriated by the mainstream to describe behaviors and tendencies that barely resemble the diagnoses. “Sorry, I wasn’t listening,” I once heard a colleague apologize. “I have such ADD today.”

“I think you’re becoming pretty OCD,” quipped a friend upon perusing my books, which are strictly organized by size.

“That movie kept going back and forth. It had no point! It was so schizophrenic.”

For over 10 years now, psychiatric researchers and patients have been working to abandon this last one. Using “schizophrenic” to describe anything that oscillates between two opposing views or behaviors can easily lead to widespread ignorance about the intricacies of the condition. “Psychosis susceptibility syndrome” is one proposed replacement, but the ubiquity of “psychotic” in common parlance may prove to be equally problematic. “Salience syndrome” was the term most preferred by patients participating in a survey at the University of Montreal and was published in the most recent edition of the Diagnostic and Statistical Manual of Mental Disorders in 2013.

This is the choice we have about labels for minorities: We either stop using minority labels to insult people, or get used to minorities asking us to use different labels to refer to them.

But if only it were that simple. Getting people to abandon marginalizing terms for minorities without fighting about it is as difficult as the word “political correctness” itself. There are two reactions all too common in any given conversation about political correctness and they both invariably botch the conversation:

  • Libertarian Outrage: “You can’t tell me what to say!  I can call anyone what I wanna call ’em and it’s their own fault if they’re upset!”
  • Liberal Outrage: “I’ll humiliate you for using an old-fashioned term because PC is all about competition and it feels cool to point out others’ faults.”

Both reactions are based on a refusal to listen and a readiness to assume the worst of the other side. Plenty of anti-PC outrage is fueled by the belief that any discussion about names and language is hot-headed and humorless, and plenty of liberal bullying is fueled by the belief that honest-to-goodness naiveté is as morally objectionable as outright hostility.

Political correctness is not a competition, and if it were, it would be one that no one could win. A human rights activist may be an LP with SAD who is LGBTQIA and know exactly what all those letters mean, but they may not know that “Lapland” and “Fräulein” are now considered offensive by the people once associated with them. And they are less likely they know about the taboo term in German for the former Czechoslovakia.

And as someone who’s spent her life having to decide how she feels about “midget” and “dwarf” and “little person,” I can tell you that attitudes are far more important than labels. Because even if the word often matches the sentiment, this is not always the case. There’s a difference between the stranger who told my father when I was a kid, “She’s an adorable little midget!” and the coworker who told my cousin recently, “The best thing about Game of Thrones is getting to laugh at that midget!” 

I will always prefer to have an in-depth discussion with someone about the meaning of dwarfism than to call someone out for using a certain word.  I will always prefer to hear someone earnestly ask me how I feel about a certain word than witness them humiliating someone else for uttering it.

Too often these discussions are diluted down into simple lists that start to look like fashion do’s and don’ts, and this is perhaps the gravest insult to the noble intentions of those who kick-started the PC movement. As one progressive blogger pointed out years ago in The Guardian, her lesbian parents are firm supporters of trans rights and, up until recently, used the word “tranny” without any idea that it is widely known among trans people as a pejorative. Too much sympathy for the couple’s ignorance could be harmful. When the mainstream insists that no one should be expected to know about newly taboo terms for minorities, it implies that no one should be expected to be listening to the human rights conversations that are going on about these groups. But conversely, too little sympathy for sheer ignorance is equally unproductive.

Because bigotry is not ignorance. As a wise man said, bigotry is the refusal to question our prejudices.   

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The Easiest Way to Avoid Saying “He” or “She”

2 Nov

Sexism abounds(Image used under CC 2.0 via)

 

A linguist will have a hard time if he tries to come up with the perfect gender neutral pronoun in English.

A linguist will have a hard time if he or she tries to come up with the perfect gender neutral pronoun in English.

A linguist will have a hard time if he/she tries to come up with the perfect gender neutral pronoun in English.

A linguist will have a hard time if s/he tries to come up with the perfect gender neutral pronoun in English.

A linguist will have a hard time if they try to come up with the perfect gender neutral pronoun in English.

A linguist will have a hard time if zhe tries to come up with the perfect gender neutral pronoun in English.

A linguist will have a hard time if zie tries to come up with the perfect gender neutral pronoun in English.

Depending upon your political leanings, you may find one or more of the sentences above ridiculous. Many people find the very idea of gender neutral pronouns preposterous to the point of sending death threats to those who have dared to formally enter them in style guides. In the middle of the last century, Strunk and White dismissed any linguistic adaptations motivated by gender equality because, they argued, the word “he” becomes gender neutral, not androcentric, when referring to everyman, mankind, etc. This argument has failed to hold up since the women’s movement, and most Western periodicals agree that such language is archaic with male chauvinist undertones, hence the plethora of proposed alternatives.

This can get harder in other languages. In German, everyone knows right away if your best friend is a girl or a guy because you have to call a female your “best friendess.” A troll gives away her gender in Russian or French the moment she types, “I’m smart/rich/European.” A Japanese speaker would give it away at the word “I.”

But wherever there are strict rules about gender, there is deep confusion about gender. A “girl” in German (“Mädchen,” from which we get “maiden”) is technically gender neutral because all words ending in –chen are. Thus, German kids grow up on stories like Snow White and Little Red Riding Hood containing lines such as, “The prince took the maiden home to his castle and married it.” English isn’t any more logical when considering that almost all of our modern caricatures of ducks—ducklings, rubber duckies, Donald, Daffy, and Duckula—are automatically associated with boyishness, yet the word “duck” is technically as female as the word “cow.”

Most people on earth speak a language that distinguishes between “he” and “she” because most of the languages of the former colonial powers do. But a study of several hundred of the 6,000+ languages on earth found most do not. Whether you’re speaking Finnish or Farsi, you can talk about your best friend, your teacher, your doctor or your least favorite coworker for hours without letting anyone know anything about the person’s gender identity. No “his” and “hers” bath towels, no needing to find out your baby’s sex for linguistic ease.

So while The New York Times Manual of Style and Usage now urges its writers to avoid gendered pronouns, it appears the best solution would be to avoid English altogether.

 

 

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Should You Be Allowed To Hide From Google?

18 May

Big Google brother ?(Image by Alain Bachellier used under CC 2.0 via)

                                                                                     

The European Court of Justice ruled against Google this week in upholding an individual’s legal right to be forgotten. That is, while newspapers and most online sites will retain the right to publish information about me (and anyone else living in the European Union), I can now petition Google to remove its links to such sites so that they will no longer appear in search results for my name. The ruling has a good deal of support here in Europe, but Google, Wikipedia and newspapers across the Atlantic are crying censorship.

I personally don’t plan on making such a request any time soon, but I am disappointed that both the ruling and Google’s opposition to it fail to distinguish between public figures and private citizens. Under U.S. law, public figures are defined as those involved in public affairs (politicians, officials, etc.); those who actively seek public attention in order to influence the discourse of one or more issues (activists, pundits, outspoken celebrities or entrepreneurs); and those involved in issues of public interest whether or not they seek attention (criminals, all celebrities ever, spouses and relatives of politicians and celebrities). Public discourse benefits from search engines being able to produce a comprehensive collection of resources about public figures. Yes, this will always result in a plethora of worthless vitriol, but as unfortunate as this is, public figures must respect everyone’s right to hold and express free opinions about them, whether someone thinks that George W. Bush is a fascist or that Jeff Bezos is a fascist. But I believe private citizens deserve greater protection.

While we can all control what we publish about ourselves on the Internet, we cannot control what other people publish about us. Photos often require our permission, outright lies can be punished by slander laws, and children are also heavily protected from exposure by anyone other than their parents.  But private citizens usually have fewer resources for combating defamation and slander. And there are no laws against a friend of a friend outing you as gay on their blog or blabbing about your medical history on Tumblr. 

While it may be crucial for certain people – for example, weapons retailers or nursery school employers – to know if you have a history of mental illness, such information is otherwise considered strictly confidential by law. The Health Insurance Portability and Accountability Act (HIPAA) of 1996 imposed heavy punishments for any medical professional who breached doctor-patient confidentiality at the height of the AIDS crisis. But in the Age of Google, any tangential acquaintance of yours with a blog and a tendency toward loudmouthery can tell the world about any diseases you may have. Google is fighting for their right to include such gossip in the piecemeal biography that is their search results for your name, available to pretty much everyone on earth.

Particularly in the case of medical minorities, even those bloggers with the best intentions can be atrociously revealing.  Most of us know the embarrassment of our parents posting our baby pictures to Facebook, but in my research for issues of disability, I’ve come across countless parents posting public confessionals like:

My daughter was heart-broken to learn today that she’s the infertile one!  

My husband wanted me to put her up for adoption because he was just too ashamed.

I wonder if anyone could ever love him looking the way he does.

Any parent facing terrifying conditions or social adversity with their child deserves a place to vent their deepest fears. But there’s a difference between opening up in a counseling session and turning the Internet into your therapy couch. Discussing such fears in books and documentaries can contribute to the greater debate on disability, especially when it leads to examining what exactly instills such fears in parents. And too much parental openness is certainly preferable to the widespread shame of previous centuries that led so many to abandon their disabled children. But disabled children will grow up someday and may not want their parents’ interviews following them wherever they go. What young adult wants their friends or employers or potential lovers accessing statements like those above by merely entering their name into the search field of the world’s most popular website?

And while parents may readily take down such comments at upon request, what about acquaintances who gossip about you online? (Remember the Mark Zuckerberg character blogging about his ex’s bra size in The Social Network?) I’ve dealt with friends of friends trashing my medical experiences online by writing my own blog entries about the incident and the issues it raised, but I don’t believe everyone should be required to. Responding to a breach of privacy not by defending yourself but by simply removing yourself from the grid should be the right of any private citizen who’s ever been humiliated for personal information that truly affects no one but their closest friends and family. One of the very foundations of bigotry is the widespread belief that freaky people owe it to the world to answer any question we have about their lives.   

My favorite aspect of the Court ruling is the very thing Jimmy Wales bemoans: “A very strict reading of the law leads to this very bizarre conclusion that a newspaper can publish information and yet Google can’t link to it – it makes no sense at all,” said the Wikipedia founder. It makes sense in that, by untangling your company’s website from your high school’s website, the new ruling endows us with the ability to compartmentalize. This ability—to separate your work life from your social life, or your medical condition from your love life when you have no intention of becoming a public figure—seems like a right well worth protecting.

Sherri G. Morris writes of the time, back in the Internet 1.0, when she had met a great guy through her local chapter of Mensa. After a few dates, he googled her name and immediately discovered she belonged to a support group for people with intersex conditions. He and Morris eventually married, but there are undoubtedly many members of minority support groups who would prefer to restrict the fact of their membership to visitors of the group’s homepage. And, when it comes to private citizens, I’m not convinced such a restriction would qualify as censorship.

To compartmentalize, to reveal certain information about yourself at your own pace, is something which we all value in our lives, and which Google has been eroding with its every update. Until now.

 

 

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The Real Reason You Should Learn A Foreign Language

27 Apr

Language Scramble (Image by Eric Andresen used under Creative Commons license via)

 

“Emily Sanford speaking, how may I help you?”

“Yeah, hi, I just got put through to you by one of your coworkers, and that guy can barely speak a damn word of German! Why do you hire foreigners? Because they’re so cheap?”

“I’d be happy to help you if you could tell me why you are calling, sir.”

“I need to ask about where to distribute some flyers your company mailed me, but I really want to know first why on earth you hire foreigners? I mean, seriously? Is it to save money?”

I pressed him for the details about the flyers, suppressing the urge to blurt out something in German to the effect of, “I American. I no understanded what you say me in Deutschy language.”

Contempt for immigrants who can’t speak the local language at the C1 Level or higher seems to pervade every country. I’ve witnessed an initiative to make English the official language of my parents’ tiny village in Upstate New York after some white farmers heard two words of Spanish on the street, and I’ve been yelled at here in Germany by surly locals for speaking English in public. These complaints are usually steeped in the explicit or implicit stance that if you can’t speak the language, you shouldn’t be here.

Yet speaking a second language is unlike any other skill. Plenty of fiercely intelligent people are terrible at foreign languages and, unlike being terrible at arithmetic or project management, this weakness will render any of their other talents virtually invisible if the job market does not operate in their mother tongue. Speaking the local language flawlessly and eloquently is the best bet to integration in any society. And if it doesn’t happen to be a language you grew up speaking, it’s a lot of work.

I speak German, French, Russian, Spanish, Swedish, and Dutch, but “speak” is a relative term. I can hold basic conversations in Russian and Spanish, but they’re always peppered with errors. (I’m probably the American equivalent of the intelligible but amusing foreigner who says things like, “I vant you to come sit on de table.”) A few years of self-teaching have led me to understand almost anything written in Dutch, but I can’t understand the nightly news and I can’t say anything not in the present tense. My in-laws in Stockholm sweetly praise whatever I dare to say in their language, but I miss most of the details of whatever they say among themselves. After starting a book called Swedish In Three Months seven years ago, I’m still on chapter four.

I’m fluent in German and French, but “fluent” is too simplistic a word for the complexity of what it denotes. My German feels about as good as my English was back when I was in middle school. That is, I can say almost anything I want to say, but I sound a lot less diplomatic and nuanced than I would like to. I still learn new words every day. (Added to my vocabulary this week were “chisel,” “epic,” and “sexual exploitation.”) Explaining an intricate issue like a budget report to a superior at work can still make me falter. I occasionally hear myself using the wrong gender or preposition, an instant giveaway that I’m foreign.  And because double-digit numbers in German are said in reverse order (e.g. “twoandthirty” instead of “thirty-two”), I hate taking down numbers. Always have and always will.

This is why it would be deceptive of me to simply say, “I speak seven languages.” To Brits and Americans, it sounds like bragging, and to Europeans, it sounds suspicious. After all, it’s an unspoken but well-known fact that Brits and Americans who fancy themselves cosmopolitan love to exaggerate whatever knowledge of a foreign language they have, especially when they’re in the company of those who can’t possible test them on it. As British-Canadian satirist Christian Lander writes at Stuff White People Like:

… two years of college Italian does not confer fluency.  For the most part, these classes will only teach a white person how to order food in a restaurant, ask for a train schedule, and over pronounce words when they are mixed into English. Amazingly this small amount of proficiency is more than enough to warrant inclusion on a resume under “spoken languages.”

… When you hear a white person say that they speak your native language, you will probably think it’s a good idea to start talking to them in said language.  WRONG! Instead you should say something like “you speak (insert language)?” to which they will reply “a little” in your native tongue.  If you just leave it here, the white person will feel fantastic for the rest of the day.  If you push it any further and speak quickly, the white person will just look at you with a blank stare.  Within a minute you will notice that blank stare has shifted from confusion to contempt.  You have shamed them and your chance for friendship is ruined forever.

Finally, though they won’t admit it, white people do not believe that learning English is difficult. This is because if it were true, then that would mean that their housekeeper, gardener, mother-in-law … are smarter than them.  Needless to say, this realization would destroy their entire universe.

Indeed, my linguistic repertoire doesn’t sound at all impressive to the 216 million people around the world who speak four languages or more. Most of these people live in Africa and, unlike me, their range always encompasses completely unrelated languages like French and Bangangte, or English and Wolof. 45% of my Facebook friends speak two or more languages well enough to say or describe whatever they want to say. For them, and half of the people on earth, speaking more than one language is like knowing how to drive or swim. Sure it requires dedication and practice, but it’s not something you flaunt once you learn how to do it. You just do it.

Conventional wisdom says it’s best to be complimented on your language skills by a native speaker.  But if that native speaker is monolingual, they will only notice what you can’t do.  It takes a polyglot to appreciate how far along you are because they know just how much work goes into what you’re trying to accomplish. Anyone who’s lived 24 hours a day in another language knows about the headaches, the falling into bed exhausted at 8 pm, the horrors of meeting someone who talks fast.

Tech reviews across the Interwebs have been abuzz this year about a new language program called DuoLingo. The online program claims to be revolutionizing the way Anglophones learn other languages via the addictive nature of video games. That DuoLingo inspires passion and dedication is wonderful, and after checking out the advanced German program, I’m impressed with how authentically modern the dialogue is. (None of that old school drivel still found in too many online programs: “I am charmed to make your acquaintance. Which way to the discotheque?”) But I’m skeptical of the company’s insistence that you can learn a language without ever speaking to people.

Does the game teach you how to develop an intelligible accent? Does it teach you how to dive into a dinner conversation with sentences shooting at you from every direction? And, perhaps most importantly, does the game warn you about the crucial cultural connotations of certain words? To cite just a few examples, in German a “Pamphlet” isn’t just a pamphlet, it’s a manifesto. The word “deportieren” means what it sounds like except it’s only used to describe someone being sent away to a concentration camp. And you will come off as crass if you ever call a German woman “Fräulein.” As with all my knowledge of German slang, I learned these lessons from German people, not dictionaries. Language is culture and there are no cultures without people.

And just like every culture on earth, every language is a moving target. What sounds hip and what sounds sophisticated and what sounds rude and what sounds stuffy differs from generation to generation, from place to place, and from person to person. It’s exhausting, but it’s also pretty cool. In an increasingly homogeneous world, the most resilient differences are linguistic. American tourists are often disappointed to discover that businessmen in London dress more like Bill Gates than Winston Churchill, or that women in Barcelona don’t walk around with roses clenched between their teeth. But no matter the visual monotony, their ears are guaranteed to be confronted with new music.

Yet, despite its shortcomings, I suspect that DuoLingo’s personless approach to foreign language learning is exactly what many bilingual wannabes yearn for. In my experience, the number one reason adults will avoid or give up learning a foreign language is not that they dislike grammar or are overwhelmed by accents – it’s that whenever you try to speak a new language, you are bound to be laughed at.

Unlike learning to dance or sew or build a shed, you can only master a language by repeatedly practicing in the company of experts—i.e., native speakers—who are not paid to have the patience of teachers. No matter how good you are, the moment you venture out of the classroom to talk to others, someone will smirk at you and someone will correct you and someone else will get frustrated with how long it takes you to say the simplest thing. Someone is bound to make fun of you. And adults do not like being made fun of.  

They don’t like being corrected mid-sentence or being told they sound “cute.” It reminds them of being back in school, and they’ll do anything to avoid it. This is why trying to learn a foreign language from a romantic partner often puts strain on the relationship. Sure it’s fun to proudly whisper “I love you, my sweetness” to your boyfriend in another language. But it’s exasperating to try to discuss a film you just watched together and see a smirk creep across his face as you say, “I think that part not so good, but other part a little, little okay, but it hard understand why the… the… the… what’s the word?”

Adult pride can be so sensitive that there are debates as to whether or not it’s rude to correct a grown person’s linguistic mistakes outside of the classroom. I’m of the camp that insists on gulping down our pride because, as my French hostess told me my third day in Provence, “Do you want to learn French or don’t you?!” Her commitment to this credo was proven when she shouted grammatical corrections to me from another room while I was talking on the phone.

But there are other conflicts where the rules for etiquette are not so clear. My partner and I recently told a Danish-German couple about our latest trip to Stockholm. We had had a few tiffs about my being left out of the Swedish conversations and his relatives being left out of the English conversations. 

Our friends nodded knowingly. “The answer to that problem,” the Dane said with a grin, “is that it’s incredibly rude of them to leave you out of a conversation by speaking a language that’s hard for you, and it’s also incredibly rude of you to insist that everyone switch to a language that’s hard for them just for your sake.”

Indeed, being excluded from anything is a nasty feeling and nothing excludes like a foreign language. Then again, once a couple is fluent in more than one common language, the ability to speak in code is a pretty sweet reward. (Ex: “Do you mind if we change the subject, honey? I don’t want to hear him get going on this again… ”)

Many adults insist that they would have become fluent in a foreign language if only their parents had paid for early lessons because kids pick up languages better. There is truth to this argument – children living abroad for a year or more are indeed more likely to become fluent than their parents are, but few understand why. I do not believe the pop science assumption that kids have an easier time learning languages because they are neurologically predisposed. Studies at Cambridge University—and my own experience as an English teacher in Berlin pre-schools—show that kids above the age of three start off a new language with the same bad accent and tendency to make mistakes as adults do. The three advantages children do have over adults are all social.

First of all, while they don’t exactly enjoy being laughed at, kids are far less self-conscious about making mistakes than teenagers and adults are. Secondly, immigrant and expat kids can easily be immersed in the local language simply by being enrolled in school, as opposed to their parents, who must first land a job in the language and therein already demonstrate some proficiency. Thirdly, and perhaps most importantly, kids have a lot less to learn to achieve fluency in their age group than adults do. A first grader’s mastery of a language involves being able to talk about Disney films and their favorite flavor of ice cream and all that other stuff found at the intermediate level of any language course. Fluency for an adult means being able to engage in debates about the next election or to write business letters or to make witty jokes with a killer punch-line, all skills for which we each need 12 years of schooling just to master in our first language, never mind a second one.

Learning a foreign language takes a lot of patience and a sturdy ego. In return, it endows you with empathy for students of your own language. And with this empathy it is not rude to smile at a non-native speaker’s mistakes or to poke fun at languages and accents. It’s hilarious to hear someone with a thick German accent try to say “weather vane” (usually comes out as “fezzerwane”), and it’s just as hilarious to hear Americans try to say, “Geschlechtergleichberechtigung” (“gender equality”).

When I was staying in Tokyo two years ago, my friend Kazumi would call me to dinner. “Em-i-liiii!”

“Hai!” I’d reply with exorbitant enthusiasm.

This always made her and her fiancé burst into giggles. “So cute how you say, ‘Hai!’ ” she would smile.

“So cute how you say my name,” I’d smile back.

This exchange would not be so innocuous if one of us were portraying the other’s accent as a sign of stupidity, or complacently refusing to ever leave our own linguistic comfort zone.

When Brits complain about the invasion of other languages and dialects, they ignore that millions throughout Asia, Africa, Oceania, the Americas and the Caribbean gave up their first language for the King’s English lest they face punishment. When Americans insist that they shouldn’t have to learn another language because immigrants and foreigners should learn theirs, they ignore that more than three-quarters of us are descended from ancestors who had to learn English as a second language. Many Americans seem to believe they did it so that we wouldn’t have to. But if they want to fully comprehend what exactly their ancestors achieved and what exactly they’re asking of immigrants today, then they will have to try to do it themselves. If I had wanted to be truly fair to my caller so angry about my coworker’s German, I would have switched into my own language and waited to see how well he fared. 

Learning a foreign language is not about picking up enough exotic words to be able to show off at dinner parties.  It’s about understanding why foreigners make mistakes in our language by exposing ourselves to the mistakes we are bound to make in theirs.  It’s about both the guest and the host, the tourist and the immigrant, not giving anyone attitude for failing to speak flawlessly to them in their own language. It’s about forging a path to greater empathy, until it expands into your own backyard and all around the world.

 

 

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Is Dwarfism A Disability?

27 Oct

(Image by Ron Riccio used under Creative Commons license via)

 

A more sober ending to Dwarfism Awareness Month…

I remember being around 10 years-old when I began taking care to never refer to my dwarfism as an “illness” or a “disease.” An illness is something that tries to destroy you. It demands you go into battle. Even if you end up grateful for its having made you stronger, you’re glad when it’s gone. My dwarfism has always been around and I’ve never tried to conquer it. It’s a condition, a word as neutral as it is fitting. But is it a disability?

Many in the dwarf community insist that it is not. The thinking goes that being extraordinarily short is no more serious than being left-handed. We don’t think of left-handedness as a disability. It’s merely a difference, one of many physical features that can shape someone’s identity, like hazel eyes or an outie belly button. Being left-handed is only an inconvenience insofar as the world is built for those who are right-handed, and populated by some who still cultivate fear and hatred of those who don’t conform to the majority. Needing left-handed scissors and mouse buttons is not really thought to be an issue of disabled access – it’s more akin to needing glasses or extra-moisturizing shampoo. Diversity awareness over the last 50 years has led the vast majority of Westerners to shrug at the idea of left-handedness.

And such a neutral shrug is what dwarf activists seem to be coveting when they insist that dwarfism is not a disability. In the words of Andrew Solomon, “Neutrality, which appears to lie halfway between shame and rejoicing, is in fact the endgame, reached only when activism becomes unnecessary.” But is dwarfism only an inconvenience insofar as the world is built for those who are taller? It’s a compelling thought experiment, but it ignores all the medical complications I’ve had to deal with. And it raises the question: What is dwarfism?

The official definition, which lumps hundreds of skeletal dysplasias and growth hormone deficiencies into one category, is in fact only concerned with height. Little People of America defines a dwarf as anyone who stands fully grown below 4’10” (1.47 m). But height is relative. Women in Indonesia and Guatemala are 4’10” on average, which means that the LPA definition is based on a certain culture, and cultures are always changing as we move through time and around the world. As a pre-teen, I always got a kick out of seeing my towering parents become the minority at LPA meetings, while as an adult, I got a kick out of seeing my German-Swedish partner tower over my parents.

Physically, Warwick Davis and Peter Dinklage have no more in common than a black-haired Korean does with a black-haired Irishman. But they share many experiences rooted in society’s reaction to their short stature. They were both cast as dwarfs in the second Chronicles of Narnia film because the fantasy tradition cares first and foremost about looks, making up its convoluted ideas about heritage and separate races as it goes along. Most forms of dwarfism are caused by genetic mutations, but others result from chromosomal abnormalities, malnutrition, or even child abuse. Thus, because it encompasses all sorts of conditions with a tremendous variety of causes and complications, dwarfism is a social construct. Can a social construct be a disability? What is a disability?

This blog recognizes disability as a medical condition that causes you to experience more pain and/or limitations than the average person in your peer group, and therein attracts inordinate attention from society. And the attention has traditionally been negative. Disabled people carry a burden most other minorities do not in that we must argue that our lives and identities are no less valuable than anyone else’s, while at the same time admitting that we will always experience a good deal of pain no matter how accepting or accommodating society is. (Poor people are the only other minority that shares this burden.) This idea of inherent pain is what causes many activists in the autistic community and the transgender community to buck the disabled classification.

But when pain is indisputably inherent to a condition, it is frequently relativized in the hopes that this will reduce ableist attitudes. When I was born, the doctor pointed out to my parents that “everyone has something different about their bodies. One person has bad knees, another has a chronic skin rash. Emily’s difference is just a lot more noticeable than other people’s.” But does this mean that bad knees and skin rashes and seasonal allergies are all disabilities? There’s more to it than that.

If a medical condition is only minimally limiting and can be treated with standard procedures, we don’t really consider it a disability and rightfully so. While there is value in relativizing everyone’s struggles in order to calm our fears of the Other, it carries the risk of our failing to recognize differences that have much to teach us. The regular migraines I inherited from my mother don’t make me disabled. The pain can be intense and it’s infuriatingly inconvenient to feel one coming on at a dinner party while also feeling the hollow echo of an empty pill box in my bag. But the migraines are treatable—and not exorbitantly expensive to treat—and easily understood by others because plenty of people get them. Having to explain to people what my back and joints can and cannot endure is a more complex task.  Alleviating or avoiding the pain is even harder.

I interviewed friends and acquaintances with achondroplasia about the physical difficulties they regularly face. Some described always needing to lie down for at least half an hour whenever they vacuum for 10 minutes or more, and needing to get up earlier than everyone else on weekdays in order to afford themselves more time for walking to work or class. Everyone has trouble finding comfortable shoes that fit—women’s business shoes and sandals pose the biggest challenge—and many need to wear orthotics. Camilla, a college student who has not undergone limb-lengthening, told me:

I definitely believe I feel fatigue more easily than people my age. I went out dancing with friends last night and I had to stop and just stand for a while because my legs were starting to hurt. Also, when I walk places with my average height friends, my joints start to hurt while they feel almost no effects of fatigue at all… I would say that the hardest physical aspect of having dwarfism would not be the height difference but the extreme muscle and joint pain that seems to be more and more easily triggered as I get older.

And by “older” she means approaching her mid-twenties. These physical limitations would sound less surprising coming from senior citizens, which is why, as an advisor explained to me, your eligibility for disability status decreases as you age and aching joints become more common to your peer group.

A friend who had limb-lengthening at the same time I did told me, “I know if I’ve been on my feet all day, my ankles get really stiff and I’m limping around at home at the end of the night… as compared to my friends who work all day and still manage to hit yoga class, the gym, or cycling class afterwards.” Those of us who have undergone limb-lengthening can test whether achondroplasia is a disability because we control for the socially-constructed advantages of height. Yet in my interviews, I noticed that many who have had limb-lengthening are often reticent to talk about their current physical hardships lest someone conclude that all that time spent breaking and healing and growing bones was for naught.

Indeed, pride complicates our perceptions of pain. While hypochondriacs rejoice when they qualify as “disabled,” those who have regularly been reminded by peers and institutions of the supposedly pitiful nature of their condition are often less willing to revel in it. Those who reject the idea of calling dwarfism a disability are often motivated by the desire to de-stigmatize dwarfism. I of course understand this desire, but I don’t see how we can make the argument without stigmatizing disability. And I am suspicious of any mindset that supports a hierarchy by essentially saying, “At least I’m not like them.”

Like people of color, people with dwarfism are united only by society’s reaction to them, not by any medical traits. This is why I do not believe dwarfism itself is a disability. However, most types of dwarfism are. The way in which the physical pain brought on by achondroplasia intersects with social limitations is explained very well by Spoon Theory, an idea invented by Christine Miserandino, who has lupus. It bears repeating that I can only begin to imagine what living with lupus is like.  In the presence of someone needing to vent about the pain, I hope to be as wonderfully deferential as so many non-disabled friends have been to me. But the fact that lupus is an illness while achondroplasia is a not is no reason to ignore the fact that Spoon Theory perfectly illustrates the broader concept of chronic pain and fatigue experienced by people with all kinds of disabilities. Emily Brand described it eloquently in The Guardian last year:

The basic idea is that you have a limited number of spoons available for the day and each action will cost a given number of them – the more demanding the task, the more spoons would be required. The phrase “running low on spoons” can be a useful way of communicating the need for rest to fellow “spoonies” who also use this system and to friends and family who are in the know. Reading up on this is one of the best things anyone could do to help with providing day-to-day support to someone with a chronic health condition, as it’s a powerful analogy that can help people to empathise with how much of an impact even an invisible symptom like chronic pain can make.

I love the idea of “running low on spoons.” I used it just last week in explaining to a friend that I couldn’t peer with her into a store window because my swollen feet were begging me to keep off the cobblestones. But at the risk of sounding, well, confused, I’m not entirely comfortable calling myself a “spoonie” because experiences in college have left me averse to glamorizing conditions with labels that sound like club memberships. And between dwarf and has dwarfism and midget and little person and LP and short-statured and disabled and physically challenged and differently-abled, I’ve got enough labels to sort through.

 

 

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Simple Language & Democracy

22 Sep

My country of residence votes today in what my partner has called “possibly the most boring German election in recent memory.”  Sure the new Euro-skeptic party may be prove to be a rising star while the Pirate Party sinks (no pun intended), but with voter non-participation at an all-time high, conventional wisdom anticipates pretty much more of the same.  There is, however, one new feature of this campaign season distinguishing it from years past – all of the major parties offer translations of their platform and websites in Leichte Sprache. 

Leichte Sprache (“Simple Language”) is a variant of German developed by professionals who work closely with citizens with intellectual disabilities.  It avoids long sentences, abbreviations and acronyms, jargon, foreign words, and Roman numerals.  The text is often accompanied by images that convey meaning.  Commonly used words supplant those used to signify sophistication; e.g. “allow” is preferred to “authorize.”  Instead of “public transportation,” Leichte Sprache translators use “buses and trains.”  Repeating the same word (“You should take these pills because these pills are the best”) is preferable to using synonyms (“You should take these pills because this medicine is the best”).  Adverbs signifying time (“Maybe tomorrow it will rain”) are used in lieu of verb tenses (“Tomorrow it could rain”), because complex verb tenses should be avoided altogether.  Figurative descriptions (“Rabeneltern” = “raven parents”) are replaced with literal ones (“bad parents”).  The German custom of smashing compound words together without dashes or spaces (as in “Eheunbedenklichkeitsbescheinigung”) is also discouraged.     

The closest English equivalent to Leichte Sprache is Simple English, which thusfar has only really gained traction on Wikipedia.  While the Leichte Sprache Netzwerk focuses on the needs of citizens with intellectual disabilities, most advocates of Simple English in the U.S. list immigrants and other non-native English speakers as their primary target group.  This is also a revolutionary idea.  If you think the contractual agreement at iTunes is hard to wade through, imagine trying to read it in whatever foreign language you studied in high school. 

Indeed, most expats I know who have only a basic knowledge of German tend to simply hand their contracts, tax forms, and newspapers over to a German friend for an explanation.  For such people, Leichte Sprache versions would be a much more surmountable hurdle. 

And anyone about to scoff at the idea of lazy immigrants trying to take the easy way out should try the following exercise.  If you’ve studied little to no German, see how long it takes you to understand the Leichte Sprache version of this text:
 

Leichte Sprache

 

Need a dictionary?  Now compare reading that to reading the original version:

 

Schwere Sprache

 

Which one would encourage you to at least give it a try?  Naturally plenty of immigrants and expats strive and pride themselves on reaching the level of language used in the second text.  But for those scientists and doctors and painters and cooks and economists who admit that foreign languages were never their strong point, something is far better than nothing.

Some have voiced concerns that this is a slippery slope toward an anti-intellectual populace; that all the poetry, intricacy, and subtlety of refined language will be thrown out with the bathwater if Leichte Sprache has its way.  As a writer, I’ll be the first one at the barricades whenever anyone proposes that all public discourse accommodate the lowest common denominator.  I’m the type to shudder at someone saying, “We’ve come 360 degrees” when they mean 180 degrees; at reporters saying “he’s a graceful person” when they mean “gracious”; at friends mistaking “literally” for “extremely.”  Because when our language becomes shallow and meaningless, our ideas become shallow and meaningless. 

But Leichte Sprache is no cause for worry because it is intended as an option, like Braille, not an imposed standard, like the Newspeak in Ninety-Eighty-Four.  Far from stigmatizing intellectuals, it is a means of empowering groups of people that are all too often excluded from the discussion.  And, perhaps most importantly, Leichte Sprache is a conscientious effort, a carefully constructed means of expression with many, many rules, whereas any shift toward linguistic parochialism among those of us without cognitive disabilities usually comes from an unwillingness to give much care or thought to what we say.

Indeed, it bears repeating that Leichte Sprache is not a matter of merely dumbing down the way we speak to certain people, with no concern for how patronizing we might sound.  For anyone who thinks people with intellectual disabilities don’t notice when we’re talking down to them, there’s this:

 

 

The role of Leichte Sprache in today’s election may not be big enough to produce any surprises, but its implementation does recognize the rights of several minorities to participate in the political process.  It also signifies Germany’s commitment to the U.N. Convention on the Rights of People with Disabilities. However, according to Leichte Sprache translator Andrea Tischner, the two parties currently in power are not doing all they could.  Chancellor Angela Merkel’s center-right Christian Democrats, and their Bavarian sister party the Christian Social Union, have failed to translate much of their platform into Leichte Sprache, while the libertarian Free Democrats use too many big words in their translations.  Interestingly, theirs has been the most diverse administration in the history of Germany—and possibly the world— with a female chancellor, a foreign-born vice-chancellor and an openly gay secretary of state.  But according to Tischner, the best translations are offered by three of the four major parties on the left: the Social Democrats, the Greens, and the Pirates.  She didn’t offer any assessment of how the anti-immigrant, Nazi-apologist Nationalists are handling things, but I think we can guess.

 

 

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When Saying “I Don’t Judge” Is Judgmental

4 Aug

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

 

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

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

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

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

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

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

 

 

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Doctor Tries to Be Hip And Misses

21 Jul

spine(Image by Katie Cowden used under CC license via)

 

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

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

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

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

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

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

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

Years ago I attended a conference where an orthopedic specialist did a presentation on achondroplasia and said with a smile, “The short bones cause the average-length muscles on achondroplastic people to bunch up so that they look like the Michelin Man!”  He clicked forward to a slide featuring a list of achondroplastic symptoms with “Michelin Man look” featured at the top.  He was obviously very proud of having come up with this description.

I was the only person in the room with achondroplasia, and I had to kick my friend sitting next to me because he couldn’t stop giggling at the surgeon’s cluelessness. The Michelin Man?

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

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

 

 

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Define “Active”

16 Jun

(Via)

 

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

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

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

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

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

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

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

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

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

My body can orgasm. Enough said.

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

What can your body do?

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

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

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

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

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

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

 

 

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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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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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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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