What the Stubblefield Rape Case Means for Disability Rights

22 Nov

Words as skin(Image by Maurizio Abbate used under CC license via)


When people continue to believe in a method that has repeatedly been proven not to work, what harm can it do? Does it matter that an herbal supplement is ineffective if someone who uses it says it truly makes them feel better? Does it really matter whether or not primates can learn American Sign Language or parrots can learn to read English out loud if it makes animal lovers so happy to believe that they do?

Misinterpreting animal communication can of course be dangerous. In 2007, a Dutch woman who insisted she was bonding with an ape at her local zoo refused to believe the primatologists’ warnings that staring directly into a male gorilla’s eyes and showing one’s teeth—i.e., smiling—triggers aggression. She refused to believe this even after the gorilla broke out of his enclosure and attacked her.

But what if someone assumes a living person is communicating with them? What if they assume said person is confiding their wishes and life choices in them? What if they can do so because we don’t share a common language with the person they claim to be speaking for?

Facilitated Communication, a.k.a. “FC,” is a method developed in the late 20th century to help severely disabled people with little or no speech communicate with others. By supporting their patient’s hand or arm, a trained facilitator could theoretically help the patient type out sentences, thereby “unlocking” intelligence previously obscured. The method was considered a breakthrough for patients with diagnoses ranging from severe autism to severe cerebral palsy. It was touted as a miracle for their loved ones, who understandably wanted nothing more than to be able to hear their thoughts, wants and needs.

Anna Stubblefield is a philosophy professor and disability rights advocate who, until recently, taught seminars about FC at Rutgers University. What she did not teach her students is that FC has been condemned over the past three decades by the American Psychological Association, the American Association of Pediatrics, the American Association on Intellectual and Developmental Disabilities, the Federal Trade Commission, and the New York State Department of Health, among others. Double-blind testing generally reveals the facilitator to be subconsciously guiding their patient’s typing, rather than simply supporting it. This year Sweden banned FC in schools nationwide.

Professor Stubblefield adamantly rejects the classification of FC as a pseudoscience. Her mother was a pioneer of the technique. When one of her seminar students asked her in 2009 if it could perhaps help his severely disabled young adult brother—referred to in the press as “D.J.”—she agreed to treat him. A 20-page report in The New York Times Magazine chronicles Stubblefield’s increasingly intimate relationship with her patient, eventually culminating in her announcement in 2011 to his family that she and D.J. were in love. She planned to leave her husband and two children for him. As his legal guardians, D.J.’s family told her she had overstepped her boundaries and requested she leave him alone. When she did not, they eventually filed charges against her. They testified that gradually Stubblefield’s claims to D.J.’s interests and values—typed out in their FC sessions—had begun to sound suspiciously like things she would want him to say. Stubblefield was sentenced last month to 40 years in prison for sexual assault.

Another proponent of FC, Martina Susanne Schweiger, was convicted last year in Queensland, Australia for performing sex acts on a 21-year-old patient whom she believed had reciprocated his love for her via FC.

I’ve written before about widespread prejudices against disabled people and how often it denies us our sexuality. But disabled people also suffer sexual abuse at rates far higher than the general population. Most are taken advantage of by their family members and/or caregivers. Stubblefield and the remaining proponents of FC argue that their critics are ableist for denying D.J.’s capacity for intellect and intimacy. The prosecution argued that Stubblefield is ableist for assuming she knows what D.J. wants.

The desire to be the next Miracle Worker is understandable and so often noble. Who doesn’t want to help those in need? And the lure of the controversial in the pursuit of justice is not uncommon. From Jodie Foster and Liam Neeson in Nell to Sean Penn and Michelle Pfeiffer in I Am Sam to Adam Sandler and Don Cheadle in Reign Over Me, Hollywood is rife with love stories and courtroom dramas about a misunderstood outcast who has finally found the one open-minded hero who understands him, believes in him and then must fight the cold-hearted, close-minded authorities from keeping them apart.

Yet red flags should go up whenever there is a risk that a self-appointed advocate is putting words in someone’s mouth, no matter which side that advocate thinks they are on. Particularly when their patient or client belongs to a highly marginalized minority.

News of this case has elicited many head-shaking responses along the lines of, “Well, they all sound nuts.” One of the jurors told NJ.com, “I was like…‘You’re going to leave your husband and your kids for someone like this?’” Disability rights advocates rightly bristle at the infantilizing of D.J.—not to mention the salacious headlines that seem obsessed with his personal hygiene—while ultimately declaring the case incredibly sad. Yet we rarely use “nuts” or “sad” to describe male teachers convicted of seducing students unable to give consent. We describe them as predators or abusers.

Abusers of course rarely think of themselves as such. Child molesters are often convinced their victims were flirting with them. Few would consider themselves sadistic. Most are simply skilled at rationalizing their behavior to themselves. But regardless of what they believe their intentions are, abusers by definition deny others power in pursuit of their own.

The Stubblefield case and the Schweiger case highlight a very uncomfortable fact for disabled people everywhere: that some of the caregivers and activists working and sometimes fighting on our behalf are doing it to feed a savior complex. And anyone with a savior complex is not truly listening to those they claim to be helping.

Addressing this problem becomes increasingly difficult when we consider how very young the concept of disability rights is over the course of human history. Living in any other era, most of us would have been abandoned by our families in asylums or elsewhere. Ancient Spartans advised throwing us off cliffs after birth. Some modern philosophers, such as Prof. Peter Singer, still advocate infanticide for some. Awareness of all this often makes us feel compelled to be eternally grateful to anyone who offers us any sort of support or help, regardless of whether or not it is truly helpful or respectful of our boundaries.

That we do not yet have the means to access D.J.’s thoughts and desires is indeed tragic. But opposition to FC does not mean we damn severely disabled people to the realm of hopelessness. On the contrary, accepting criticism of FC can only help to improve upon the ways in which researchers develop better practices and technologies. Relying on discredited methods would not have gotten Stephen Hawking his voice. Annie Sullivan prevailed with Helen Keller because she not only relied on rigorously tested methods but also shed her status as Keller’s sole communicator by enrolling her in an interdisciplinary program at the Perkins School. The ability to kill your darlings is an ingredient of innovation.

And any true investment in disabled people and the methods that best assist them must be accompanied by the credo activists began using around the time D.J. was born: Nothing about us without us.



This Is How You React When Someone Finds Your Stupid Little Joke Offensive (And You Know They Might Be Right)

1 Nov

From the Archives


Really, With the Gay Jokes?” “The Rape-Joke Double Standard.” “Has The Onion Gotten Too Mean?” These are the headlines to just a few of the several articles appearing this week about comedians and conscience. All of them make excellent points, but the problem with trying to explain why a joke is offensive is that it instantly kills the mood. Culture critics aren’t professional comedians and thus they almost always end up being viewed as the more uptight of the two, even if their arguments are rock-solid.

And yet, the best comedians are pretty good culture critics, as Dara Ó Briain proved years ago at the Theatre Royal in London. Amidst his cracks about the idiots who ask you to remove your shoes in their home, the idiots who confuse astronomy and astrology, and the idiots who think the IRA had uniforms, he talked about a time when he was the idiot:

Last year I told a joke, and this is not a good joke, I have no excuses.  It is a terrible joke, but it was about the musical Billy Elliot. And “What was the composer’s inspiration for Billy Elliot? Elton John – do you think he saw a little of himself in Billy Elliot?”

I know. It was rubbish. I didn’t mean it as an attack on Elton John, or as an attack on the gay community. I meant it as another joke in the glorious tradition of jokes involving the word “in.” As in, “Do you have any Irish in ye? Would you like some?”

Okay, so he explained he didn’t intend to trash homosexuality. But he didn’t leave it at that. He went on to talk about the backlash from the LGBT rights alliance Outrage, who said the joke contributed to a culture of hatred against gay men in Britain. Ó Briain explained:

And the thing is, your initial reaction is when somebody does a complaint like that is to get all tough and say, “It’s only a joke, for Jesus’s sake, relax.” Swiftly followed by arguments about civil rights and comedy’s obligation to say the difficult thing and freedom of speech. Which is a fairly lofty point to bring in to back up something as bad as that joke about Billy Elliot. You wouldn’t go to Strasbourg to the European Court of Human Rights with that as your argument: “Oh, my lords and ladies of the court, Elton John? Do you think he saw a little of himself in Billy Elliot?”

He went on to clarify his political stance, emphasizing that “there is no pedophilia-homosexuality relationship at all,” showing he was brave enough to break character as a comedian despite the risk that always carries of losing the audience. He then addressed that risk as well:

And some people think it’s very politically correct of me, but then, I’m Irish. And if anyone’s benefited from a good dose of political correctness on this island, it’s the Irish. Remember the good old days with all those jokes about how stupid we were? And then a memo went around some time in the Eighties, when you [Brits] all said, “Oh, Jesus, we’re not doing jokes about the Irish anymore? Okay, fine.” And it just stopped. And thank you very much. A bit overdue, but thanks very much nonetheless.

He went on to tell a joke about a bunch of drunk Irishmen, reveling in the fact that he was allowed to tell it and the British weren’t. He then said, “But again with the whole Billy Elliot thing, the reason I backed down so fast on that was because I received one letter of support.” Removing the letter from his pocket, he proceeded to read the message sent by a group of conservatives in Northern Ireland who applauded him for taking a stand against the forces of sodomy. “If you ever use the phrase ‘forces of sodomy,’ it had better be a gay heavy metal band that you’re talkin’ about!”

It’s rare that comedians are brave enough to admit that their joke was a fail. But I’ve never heard a comedian own up to it so fiercely and admit the ways in which he’s personally benefited from the political correctness movement. By changing his target from the group he originally attacked to himself, Ó Briain proved not only the sincerity of his regret but the breadth of his comedic skill.

And I’ve said it once and I’ll say it again: Whenever comedians insist that any criticism of their work is an indictment of all comedy, it sets the bar for comedy so low that no comedian need ever try to be original. Ignoring the “PC police”—i.e., anyone who doesn’t live with the privileges they do—they can simply regenerate old stereotypes, mining the minstrel shows, the frat houses and the school yards, and if no one laughs at this, it’s simply because we’re all too uptight, right? Wrong. We don’t refrain from laughing because we feel we shouldn’t. We refrain because, unlike the repressed who giggle away in awe, we’ve heard it a thousand times before and we know it’s far from unique. And isn’t unique what every comedian, entertainer and artist strives to be?

Or, in the words of another Irish comic, Ed Byrne: “I see comedians making jokes about fat people being lazy, and I just think, well, they’re not as lazy as comedians who get easy laughs by picking on fat people.”


Originally posted May 12, 2013

Cultural Appropriation vs. Cultural Exchange

25 Oct


From the Archives


As Halloween approaches along with all the stomach-turning caricatures of minorities and foreigners, I find myself repeating the same question over and over: When is it okay to wear or adopt something from a culture you don’t belong to?

Obviously, the most offensive appropriations rely on inane stereotypes most people I know would never go near. But this doesn’t mean that globe-trotting, multicultural enthusiasts—like myself—can do no wrong.  Since the 1960s, upper/middle class whites dabbling in other cultures has been celebrated under the banner of “Diversity!”  But from the point of view of certain cultures, Nigerian writer Jarune Uwujaren argues, it’s often just another chapter in the long tradition of Westerners “pressing their own culture onto others and taking what they want in return.”  American Indians do not appreciate headdresses used as fashion statements.  Hindus do not applaud non-Hindus flaunting bindis.  And Mexicans don’t enjoy seeing Day of the Dead re-appropriated as just another Halloween costume. 

Yet the Mexican Día de los Muertos is the result of Catholics adopting what was originally a pre-Columbian tradition.  Modern German children meanwhile have taken to celebrating Halloween, much to their parents’ chagrin.  There isn’t a holiday on earth that hasn’t been adapted from something else, leading atheist comedian Mitch Benn to observe, “If only practicing Christians can celebrate Christmas, then only Vikings can say, ‘Thursday.’ ” 

Indeed, intercultural contact always leads to intercultural mixing. Nowadays brides in China often wear two wedding dresses on their big day: a traditional Chinese red dress and a traditional Western white gown.  When a friend from Chengdu married her German husband in Berlin, she turned this trend on its head, wearing a Western designer dress that was red and then a cheongsam that was white.  Borders move and cultures blend constantly throughout history, often blurring the line between cultural appropriation and cultural exchange.

For this reason, it is important to remember that absorbing the fashions and customs of another culture is not always offensive.  But it is just as important to remember that it is not always open-minded, either.  After all, colonial history is rife with Westerners who filled their homes with foreign gear and lectured others about the noble savage.  Among the most ardent fans of Tibetan Buddhism, American Indian animism, and Norse mythology were the Nazis.  

We all love to show off what we’ve learned and delving into another culture can be enriching. But minorities tend not to like it when an outsider appoints herself an expert and lectures more than she listens.  Or thinks that listening to minorities is a heroic act, rather than common courtesy.  Visiting another country feels special when we’re the first of our friends and family to go, but there is no guarantee we’ll truly be acquainted with the culture.  Thanks to language barriers and the insular nature of expat bubbles and tourist tracks, it is fairly easy to study or even live in another culture for several years without getting to know a single person from that culture.  (Waiters and receptionists don’t count.)  

Whether venturing to the other side of the world or the other side of the tracks, it is always much easier to buy something, taste something, or get a bit of history from a book than to talk to someone from another culture.  Because books and merchandise can’t talk back.  They won’t call us out if we make false assumptions.  If we do actually strike up a conversation with someone from another ethnic group, whether Liverpudlian or Laotian, the temptation to flaunt the experience like a feat of greatness can be overwhelming. Jarune Uwujaren wrote about this pervasive temptation last month:

I remember that at my sister’s wedding, the groom – who happened to be white – changed midway through the ceremony along with my sister into modern, but fairly traditional, Nigerian clothes.

Even though some family members found it amusing, there was never any undertone of the clothes being treated as a costume or “experience” for a white person to enjoy for a little bit and discard later. He was invited – both as a new family member and a guest – to engage our culture in this way.

If he had been obnoxious about it – treated it as exotic or weird or pretended he now understood what it means to be Nigerian and refused to wear Western clothes ever again – the experience would have been more appropriative.

But instead, he wore them from a place of respect.

Appreciating the beauty in other cultures is always preferable to xenophobia.  Enjoying a trip abroad that happened to involve minimal interaction with the locals is perfectly fine.  But drawing attention to oneself for reveling in the mysteriousness of a culture is to revel in its supposed Otherness.  Whenever an entire culture is reduced to its exoticism, it becomes nothing more than an accessory or a toy – not a sign of cultural understanding.  

And while adopting a sacred custom “just because it looks cool” can be inconsiderate, imbuing our reasons for adopting a trinket with too much meaning can also make a native roll their eyes.  It’s one thing to buy a handbag on a trip to Tokyo simply because it’s beautiful.  A Japanese woman is buying it simply because it’s beautiful, after all.  But it’s another thing to flaunt it like a badge of enlightenment. 

The blog Hanzi Smatter documents and explains the snafus and utter nonsense that so often result when Westerners get tattoos of Chinese characters copied off the Internet.  Such incidents demonstrate that vanity is often mistaken for art.  We’re all a little vain, yet the difference between art and vanity is crucial because vanity is an indulgence, not a challenge or an attempt to communicate.  When Dita von Teese donned yellowface for a London performance titled “Opium Den,” fellow burlesque artist Shanghai Pearl wrote:

I am not saying artists should not tackle controversial or challenging subjects. However, if we choose to take on challenging material, we should be prepared to have challenging conversations. I absolutely believe that art will not suffer from sensitivity. Sensitivity should make us work harder, research more, and think more. Art can only benefit from that.

Indeed, nothing suffers from genuine sensitivity.  The lesson from colonialism is not to stop exploring the world and reading about it, but to always bear in mind that there can be no cultural understanding without dialogue.  When deciding whether to adopt a tradition or style from another culture, we should consider what several people from that culture have to say about it.  Because there are no cultures without people.



Originally posted November 3, 2013

Curiosity Kills the Rat

19 Oct

From the Archives


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

— Michael Franti

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

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

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

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

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

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

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

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

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

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

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



Originally posted May 19, 2012

Who Should Think You’re Beautiful?

11 Oct

Goodnight(Image by Aphrodite used under CC via)

From the Archives


Should beauty pageants stay or go?  The New York Times tackled this question during the 87th Miss America Pageant.  Amidst all the discussions about deferential giggles and zombie smiles, I find myself echoing the conventional wisdom that Let’s face it, it’s all about the swimsuit round, and Caitlin Moran’s wisdom that You can call it the ‘swimsuit round’ all you like, but it’s really the bra and panties round.

A decade ago Little People of America entertained the idea of holding an annual beauty pageant, but it was swiftly nixed by the vast majority of members.  The inherent problems were pretty obvious: Isn’t being judged by our looks the biggest problem dwarfs face?  Do we really want to set a standard for dwarf beauty?  And if so, which diagnosis gets to be the standard?  Achondroplasia or SED congenita?  Skeletal dysplasias or growth hormone deficiencies?  Ironically—or perhaps not—there was also a widespread fear that heightism would dominate the judging.

What I find most unsettling about beauty pageants is not the nondescript personality types on display—although I am very concerned about that, too—but the idea that it is perfectly normal and okay to want millions of strangers to love your looks above all else. This idea seeps into every corner of Western culture, not just beauty pageants and women’s magazines. 

If you’ve ever entered “body image” into a search engine, it won’t take you long to come across the phrase You’re beautiful!  It’s everywhere, and it’s usually geared at anyone, particularly anyone female, who believes they fall short of the beauty pageant prototype.  You’re beautiful! is part battle cry, part mantra – a meek attempt to broaden society’s beauty standards and an earnest attempt to bolster individual self-confidence.  Super-imposed over flowers and rain clouds and sunsets and cupped hands, it becomes hard to tell the online empowerment apart from the online valentines. And as much as I admire the intentions behind it, I’m tempted to question it. 

Making peace with our bodies is important.  Diversifying our criteria for human beauty is necessary.  But why should we need to hear that we’re beautiful from someone we don’t know?  Of course we can never hear it enough from friends and lovers.  (I’ve heard it three times in the last 24 hours and I’m not giving it up for anything!)  But basing self-confidence in strangers’ praise upholds the notion that it is bad to be thought of as ugly or plain by people who don’t know anything else about you

We all have our secret fantasies about being gorgeous rock stars and princesses and Olympic heroes with throngs of admirers dying to throw their arms around us.  But, to echo Jane Devin, if most men can go through life with no one but their lovers daring to praise their looks, why do women still demand so much attention? 

This past spring Scientific American revealed that, despite how much our culture suggests that most of us need to hear over and over how attractive we are before we even begin to believe it, the average person overestimates their appearance.  This shouldn’t be too surprising. The world’s largest empire isn’t called “Facebook” for nothing.  And as the Scientific author pointed out, the vast majority of us consider ourselves to be above-average in most respects, which is statistically impossible.  He explains: 

If you think that self-enhancement biases exist in other people and they do not apply to you, you are not alone. Most people state that they are more likely than others to provide accurate self-assessments

Why do we have positively enhanced self-views? The adaptive nature of self-enhancement might be the answer. Conveying the information that one has desirable characteristics is beneficial in a social environment…  Since in self-enhancement people truly believe that they have desirable characteristics, they can promote themselves without having to lie. Self-enhancement also boosts confidence. Researchers have shown that confidence plays a role in determining whom people choose as leaders and romantic partners. Confident people are believed more and their advice is more likely to be followed.

So self-confidence is good and self-doubt is bad, both in love and in life.  And demanding strangers and acquaintances tell us that we’re beautiful is narcissism, not self-confidence.  In the words of Lizzie Velásquez, who was voted Ugliest Girl in the World on YouTube, “I don’t let other people define me.”

This is not to suggest a ban on praising anyone’s looks ever.  I still harbor adolescent crushes on a pantheon of celebrities, from George Harrison to Harriet Beecher Stowe.  But between the beauty pageants and the You’re beautiful! memes, it does seem that most of us still believe that having broad appeal is some sort of an achievement, as opposed to dumb luck.  And that for a woman, it’s an achievement worthy of mention on a résumé. 

In April, President Obama touted newly appointed Kamala Harris as “by far the best-looking attorney general.”  After dealing the president a well-deserved eye-roll, Irin Carmon at Salon suggested that before publicly praising someone’s looks, we should ask ourselves: Is it appropriate to tell this person and/or everyone else that I want to sleep with them?   

It’s an excellent point, though crucial to add that seeing beauty in someone is not always rooted in lust.  Love for friends and family usually renders them absolutely adorable or heroically handsome.  Whenever I overhear someone say, “You’re beautiful!” it will always register as an expression either of desire or affection.  (Neither of which, Mr. President, are ever appropriate in a professional context.)  

Yet plenty of us still envy Kamala Harris a little.  And too many of us seem to think being conventionally attractive is truly important because it corresponds directly to being successful in love.  This is perhaps the most dangerous myth of all. 

If I hear the phrase, “She was out of my league!” one more time, I’m going to swat the sad sack who says it.  My dating history is nothing to brag about, but I can brag—shamelessly—about being a trusted confidante to dozens upon dozens of different people with all sorts of dating histories.  And after a few decades of listening to them spill their hearts out, I’ll let you in on a little secret: When it comes to love and lust, everyone is wracked with self-doubt. 

And I mean everyone.  The athletes, the models, the geeks, the fashionistas, the bookworms, the jet-setters, the intellectuals, the rebels, the leaders, the housewives, the musicians, the Zen Buddhists, the life of the party.  That girl who can’t walk through a club or the office without being propositioned.  That guy known as a heartbreaker because he can bed anyone he wants to and does so.  That stoic who doesn’t seem to care about anything.  That wallflower so set on navel-gazing that she thinks she’s the only one who’s lonely.  Every single one of them has fretted to me at 2 am, sometimes sobbing, sometimes whispering, sometimes hollering, always shaking: “Why doesn’t he/she love me?!” 

This isn’t to say that it all evens out completely and no one handles it better than anyone else.  Outside of abusive relationships, those who obsessively compare dating scorecards and create rules and leagues for turning sex into a competition are invariably the most miserable.  Some people date a lot because they’re popular, others because they have low standards.  Some marry early because they’re easy to know and like, others because they’re terrified of being alone.  Just being able to easily land a date or get laid has never made anyone I know eternally happy.  Narcissism and self-pity come from thinking it can. 

We’d all like to be the fairest of them all, but what we want more than anything is to be devastatingly attractive to whomever it is we’ve fallen in love with.  And because only those who genuinely know us can genuinely love us, any beauty they see in us comprises our style, our charisma, our perfections and imperfections.  It is the driving force behind all the world’s great works of art we wish we were the subject of.  And unlike beauty pageants or Google’s image search, true art is constantly redefining and questioning and promoting beauty all at once.   

I will always tell certain people how gorgeous they are because I can’t help but think that about those I’m awe of.  (And I guarantee that my friends are prettier than yours.)  But for those of you out there who might feel tempted to rebut the compliment with that age-old line, “You’re just saying that because you’re my [friend/partner/family]!” consider that a compliment motivated by true love is hardly a bad thing. 

And that being desired by someone who doesn’t love you at all can get really creepy.  Really fast. 



Originally posted September 15, 2013

It’s Dwarfism Awareness Month!

4 Oct


From the Archives:


October is Dwarfism Awareness Month. This means you should be aware of the facts and experiences regarding people with dwarfism for the next 25 days. Then you can stop and go back to life as usual.

We have picked this month because it has Halloween in it. This way we can ensure that no one will offend us through drunkenness or choice of costume. This plan is foolproof.

We realize that October is also Breast Cancer Awareness Month, LGBT History Month, and Polish-American Heritage Month. Given that a month can handle only one minority at a time, we urge you to side with us. I myself picked my dwarfism over my Polish heritage and I promise you, the choice was easy. Anyone who chooses otherwise is a self-hating dwarf and the reason why we haven’t had a dwarf president yet.

In order to become Aware Of Dwarfism (A.O.D.), you can read up on it under the FAQ’s, read about some of my dwarfish opinions here or here or here, or consider any one of the following facts:

To begin with, Peter Dinklage is the best dwarf. Everyone agrees on this.

We love being photographed on the street. (Thank god for camera phones!) It is every dwarf’s dream to end up on Tumblr or Instagram someday. Either that or in a Peter Jackson film.

It is true that all dwarfs are magical. But especially homosexuals with achondroplasia. They are dwarf fairies.

We love it when you ask about Lord of the Rings. Please keep asking us about Lord of the Rings. We’re currently in fierce competition with New Zealanders over who gets the most LOTR questions.

Mini-Me is even better. It is the height of originality. We can’t get enough of it.

Please keep telling us that we must be really good at hide-and-seek. We don’t quite believe it yet, so your pointing it out is helpful.

Tossing a dwarf will make you more of a man. This has been scientifically proven by evolutionary biologists.

Adding a dwarf or two to your fantasy/cabaret/oddity story will make you a sophisticated artist. In his little known essay “L’art mystérieux du nain,” Toulouse-Lautrec wrote that World War II would have been prevented had there been more dwarf figures in 1930s song and film. (Terry Gilliam and Amanda Palmer are currently in a bidding war over the rights to the essay.)

In China and Russia and other evil countries, limb-lengthening is a cruel form of torture. In America, limb-lengthening is a miracle.

Liberals say a dwarf who has had limb-lengthening is destroying the dwarf community. Conservatives say a dwarf who has not had limb-lengthening is destroying their own future. Realists point out that dwarfs are destructive by nature.

Indeed, there are three dwarf personality types: belligerent, cute or nefarious. That is all. If you have met a dwarf who is contemplative or sarcastic or boring, that person is a not a dwarf. He is a fraud. I mean frawd.

Garden gnomes are frawds.

Midgets are left-handed dwarfs. Munchkins are elves in disguise. Oompa-Loompas are related to Pygmies, but less racist, so when in doubt, say Oompa-Loompas.

Dwarfs are happy to answer any of your questions about their sex lives. Just remember that if you don’t laugh at some point, we will be offended.

Dwarfs cannot have normal children. Like our great-great-great grandfather Rumplestiltskin, we are always on the lookout for normal children to kidnap. If you see a dwarf with normal children, contact the local authorities immediately.

Remember these facts and you will be officially A.O.D., which means no one has the right to accuse you of being insensitive from here on in. Better yet, you can recite these facts at dinner parties and lecture your friends with your newfound expertise. It is very important to be the expert on a subject at a dinner party. It proves you are a grown-up.

It is also important to spend as much time as possible this month making up height puns. Unfortunately, this is a bit of a challenge as many of the best puns have already been taken: Thinking Big; Don’t Sell Yourself Short; Even Dwarfs Started Off Small; Little People Big World; In Our Hearts We Were Giants. I suggest aiming for slightly more abstract sayings like, “All dwarfs have high voices. Ironic, isn’t it?” But make sure you say “high” emphatically or it will be lost on people. (Oh, and I’ve found that saying, “Achondro -paper or -plastic?” confuses most supermarket cashiers.)

And finally, sometimes it’s spelled “dwarfs” and sometimes it’s spelled “dwarves.” We get to decide. It’s the best part about being a dwarf.



Originally posted in October 2013

Berlin Fashion Week Features Pieces Made for and Modeled by Dwarfs

1 Oct

Auf Augenhöhe_Copyright Valerie Diedenhofen

(Image © Valerie Diedenhofen used with permission)


It’s been a good week in the media for dwarfs. Not only did Peter Dinklage’s Emmy win allow for him to speak out once again against bullying, but Fashion Week just ended in the city I call home and I couldn’t help but squeal a little “OMG!” at seeing history being made.

With her collection “At Eye Level,” Berlin-based designer Sema Gedik presented clothes made for and modeled by Laura Christ, Mick Mehnert, Eva Ehrmann and others with dwarfism. Gedik was inspired to do so after observing the difficulty of finding clothes that fit—not to mention stylish ones—faced by her cousin Funda, who has achondroplasia. That the fashion industry has never seemed interested in offering dwarfs clothing made for their bodies imbued Gedik with “an intense feeling of injustice.” She tells Berlin’s Tageszeitung, “Fashion should not be restricted by social conventions.”

But those restrictions are there, which is why she reports being surprised that she even managed to get the project off the ground and into Fashion Week. Indeed, a feature in The Washington Post earlier this year about the work of American designer Kathy D. Woods did little to help her kickstarter campaign to fund her line of clothes for fellow dwarfs. The campaign ended up falling far short of its goal.

El Mundo has declared Gedik’s debut “a revolution,” but the revolution is arguably the easiest step for any social justice movement. The trick is getting the new ideas to stick. Distributors argue that dwarf clientele wield too little purchase power to be worth investing in due to their small numbers. Gedik rebuffs this claim, pointing out that the number of women with typical catwalk-like measurements also constitutes a minority of consumers.

Ever since New York Fashion Week featured a handful of disabled models, some cultural critics have wondered whether the ulterior motive of the world of haute couture is to exploit those who stand out for shock value. After all, Francis Bacon’s truism that “there is no exquisite beauty without some strangeness in the proportion” both honors diversity and draws inordinate attention to an individual’s Otherness at the expense of anything else they may offer or need. Which is perhaps why my excitement and pride at Gedik’s breakthrough is tempered by a slightly more cynical It’s about time.

Gedik is adamant that her goal is to finally and fiercely open up the fashion market to dwarf consumers. “This is only the first step,” she insists. But there is a risk that the opening will close as soon as the novelty wears off. The final step in the path to justice will be to see work like Gedik’s so often that all that’s worthy of note is the choice of colors.


Auf Augenhöhe_Copyright Nina Hansch



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.



We Gotta Watch Our Language When It Comes to End of Life Debates

13 Sep

Jerzy body

(Image by Ekaterina used under CC license via)


On Friday the British Parliament resoundingly struck down a bill that would guarantee its citizens the right to physician-assisted death. Yesterday California’s legislature voted to make it the sixth state in the U.S. to legalize it.

Robust, nuanced arguments have been made for and against physician-assisted death for terminally ill patients, and none of these arguments could be successfully summarized within a single article. This is why a conclusive stance on the issue will never appear on this blog. It is nothing but moving to hear the deeply emotional pleas from those in the right-to-die movement who have thought long and hard about the prospect of death, who feel empowered by having some choice when facing down a daunting fate, who don’t want to find out which of their loved ones may turn out to be unskilled at care-giving. And it is equally moving to hear the experiences of those working in hospice and palliative care who face the approach of death every day with the determination to make it as minimally painful and emotionally validating as possible for all involved.

However, despite the emotional validity of both sides, there are tactics the right-to-die movement should avoid if it does not wish to make our culture more ableist than it already is. Openness about end of life decisions can shed light on a subject previously cloistered away, but the more the right-to-die movement celebrates the idea of ending someone’s life before it transforms into a certain condition, the less willing the public may be to engage with and invest in those who live in that condition.

Which is why no one should call physician-assisted death “Death with Dignity,” as lawmakers in Washington, Oregon, and New York have done. The implication that anyone who opts out of assisted death might live an undignified life is reckless and arrogant. A patient declaring the prospect of invasive life-saving interventions “too much” is fair. A writer declaring the quality of life of those who opt for them “pathetic” is ostracizing. It insults not only those enduring late-life debilitation, but the everyday conditions of many, many disabled people of all ages around the world.

Even today, when so many movements push to integrate disabled people into the mainstream, the average person is generally isolated from the reality of severe deformity, high dependence, and chronic pain. This isolation feeds fear and is therein self-perpetuating. As opponents have pointed out, many right-to-die arguments quickly snowball, equating terminal illness with chronic illness and disability, and portraying all three as a fate worse than death. Hence the name of the New York-based disability rights group Not Dead Yet.

Vermont’s recent law, the Patient Choice and Control Act, bears a far less polemic name than the others currently on the books. That’s a start. Experts are divided as to whether the current openness about end of life decisions in the U.S. has led to more terminally ill Americans considering and opting for hospice and palliative care. Regardless, both sides should be encouraging well-informed discussions that honor a patient’s right to voice his beliefs based on personal experience, and a disabled person’s right to not be further marginalized by a culture that has historically feared her existence.


*Note: I use “physician-assisted death” and other terms in deference to World Suicide Prevention Day this past Thursday and the media guidelines from the Center for Disease Control, which discourage use of the word “suicide” in headlines to avoid contagion.


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

6 Sep

Look at my face/s(Image by NNelumba used under CC license 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



The Problem of Dwarfs on Reality TV

30 Aug

voyeurism(Image by Natasha Mileshina used under CC license via)


The new television schedule has kicked off both in the U.S. and the U.K. with the usual plethora of reality TV shows and the usual high number of shows zeroing in on people living with dwarfism: The Little Couple; Seven Little Johnstons; Our Little Family; Little Women of L.A.; and the grandfather of them all, Little People, Big World. Besides the patronizing titles and taglines, the shows feature factoids about dwarfing conditions and lots of melodrama thrown in with some social critique lite.

Having handed my life story over to a journalist for the umpteenth time this past spring, my husband and I recently discussed how important it is to be able to trust that your storyteller will not exploit you for entertainment value. It takes a perceptive mind and an agile hand to elucidate dwarf-related topics like bio-ethics, self-image, political correctness, beauty standards, harassment, adoption, job discrimination, pain management, and reproductive freedom—all of which could and have filled scholarly journals and books—via mere sound bites. At one point in the conversation my husband paused and said, “Just to make sure we’re on the same page, honey – we’re never appearing on reality TV. Right?”

I laughed and nodded reassuringly.

He was not unwise to worry.

Reality TV offers their subjects fame at the expense of their dignity. Documentaries and news features also carry a risk for this, but one element that distinguishes reality TV from journalism is the rock-solid guarantee of fights, tears, and bad-mouthing. For some participants there may be gratification in the knowledge that millions of viewers are interested in you enough to want to watch how you live every waking minute of your life, but it comes with the unspoken fact that they’re also waiting for you to slip up so that they have a good story to hash out among their friends and in gossip columns.

We are all vulnerable to voyeuristic temptation and the media knows this. It’s why it offers us up-close shots of survivors’ tears as soon as possible, and it’s why we click on them, despite recent and compelling arguments that this is socially irresponsible. The message of reality TV seems to be that no one really ever moves beyond middle school jealousy and superficiality, so we might as well let it all hang out. The better angels of our nature be damned.

Years ago, Cathy Alter mused via a glib article in The Atlantic about her rather bizarre obsession with dwarf reality shows. The greatest revelation came from her therapist, who explained, “I think regular size people feel more secure as people when they can observe midgets… I think that contrast is validating because we tell ourselves that at least there are people who have it worse, because they are small… We need the midgets to feel normal.”

This confirms what I have always suspected and, admittedly, feared. That millions of people are watching under the guise of wanting to understand difference while ultimately enjoying getting to look at lots of juicy pictures of freaks.  This is why these sensationalist shows do so well, while earnest, in-depth documentaries like Little People: The Movie remain out of print. Before the birth of reality TV in the late 90s, dwarfs were most often featured on daytime talkshows, alongside episodes featuring people caught in affairs and people who believed they were the reincarnation of Elvis.

As often the only dwarf in a given person’s circle of acquaintances, I have been told by many how touching they find these shows. How wonderful it is to see that “dwarfs are just like everyone else!” I can accept that there will probably always be a market for shallow entertainment that twists tragedy into soap opera and reduces the complexities of life into easy-to-swallow sentimentality, no matter how far society progresses. Tabloids will continue to exist because millions of people—including kind, intelligent people I know—will continue to buy them. In this regard, the individual shows are not so much problematic as is the fact that they are where TV viewers are most likely to see people with dwarfism.

Actress Hollis Jane, who called out Miley Cyrus last year for exploiting performers with dwarfism as sideshow acts, explained this summer why she turned down a contract to appear on Little Women of L.A.:

Other than Peter Dinklage, Tony Cox (Bad Santa) and Danny Woodburn (who played Mickey Abbott on Seinfeld), it’s nearly impossible to name successful actors and actresses who also happen to be little people. People get upset about the Kardashians representing women in America but for every Kardashian there is a Meryl Streep, a Natalie Portman, or a Zoe Saldana. Little people don’t have that. I have wanted to be an actress since I was in first grade and I played the angel, Gabriel, in a nativity play. I held firm to this dream until sixth grade when a parasitic thought crawled into my head and told me that I would never be an actress because I was a little person. I realized that since there was no one on television who looked like me, it meant that there would never be… When Game of Thrones premiered, my world was rocked. Peter Dinklage was doing the impossible. He was being taken seriously as an actor without exploiting his height for shock value or a joke. The night he won his Emmy, I cried for an hour.

She adds, “I have nothing against the women on these reality shows. There is a part of me that thinks it’s great we have little people on TV in any capacity…but I also think we deserve more than that.”

If the general public truly believed this, if reality TV viewers truly saw their dwarf subjects as their equals rather than curiosities, then we would see a lot more dwarfs as newsreaders and game show hosts, on sitcoms and dramas, in romcoms and thrillers, playing the leads and the heartthrobs and the bella donnas. Perhaps that day will come, but for now few people can name a single dwarf actress and many dwarfs get told that they look like “that guy on the show about the little people.” That’s our reality.



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.



Happy Birthday, ADA!

26 Jul


This week marks the 25-year anniversary of the passing of the Americans with Disabilities Act. As others have noted, the law was ground-breaking not only because of its international ripple effect, but because it recognized disability not as an issue of health, but of human rights.

Author of the bill, Robert L. Burgdorf, Jr. writes in The Washington Post why this was so necessary:

People with disabilities were routinely denied rights that most members of our society take for granted, including the right to vote (sometimes by state law, other times by inaccessible polling places), to obtain a driver’s license, to enter the courts and to hold public office. Many states had laws prohibiting marriage by, and permitting or requiring involuntary sterilization of, persons with various mental or physical conditions, particularly intellectual disability, mental health conditions and epilepsy. A number of states restricted or denied the right of people with mental disabilities to enter into contracts. Several U.S. cities, including Chicago, Columbus and Omaha, had what became known as “ugly laws” that banned from streets and public places people whose physical condition or appearance rendered them unpleasant for other people to see. These laws were actually enforced as recently as 1974, when a police officer arrested a man for violating Omaha’s ordinance.

In some instances, discrimination threatened the very lives of individuals with disabilities: Lifesaving medical treatments that would routinely have been made available to other patients were denied to patients with disabilities; in 1974, the New York Times cited an estimate that unnecessary deaths of babies with disabilities in the U.S. resulting from withholding of medical treatment numbered in the thousands each year.

Things have improved substantially, which is cause for celebration. But not complacency. Which is why NPR’s article “Why Disability and Poverty Still Go Hand-In-Hand” is well worth your time, as is the above TED Talk by the late, great Stella Young, whose unexpected death last winter was a tremendous loss to the disability rights movement and to anyone who enjoys a good dose of sarcasm with their social critique.



Difference Diaries Wants to Hear from You

19 Jul

Copyright Difference Diaries


I have recently become the Director of Educational and Multimedia Outreach at the Difference Diaries, and today marks the launch of the Difference Diaries Blog. We want submissions and we want them now.

The Need. This week Freeburg High School in Illinois jubilantly voted down a petition by Little People of America to retire their school mascot, the Freeburg Midgets.

Such incidents are hardly isolated. Dwarfs rarely make the news, and when we do, we often wish we didn’t. Two summers ago Slate magazine, one of my favorite socio-political periodicals geared at young adults, kicked off a blog about Florida with an opening article called, “True Facts About the Weirdest, Wildest, Most Fascinating State.” Among the facts that apparently render the Sunshine State weird are the python-fighting alligators and “a town founded by a troupe of Russian circus midgets whose bus broke down.” On the day of its release, Slate ran the article as its headline and emblazoned “A Town Founded By Russian Circus Midgets” across its front page as a teaser.


Here’s the thing about dealing with all this. You get used to it, but not forever and always. Sometimes it rolls off your back, sometimes it hits a nerve. This time, seeing a magazine as progressive as Slate brandish RUSSIAN CIRCUS MIDGETS on its front page while leaving disability rights out of its social justice discussion brought me right back to college, where friends of friends called me “Dwarf Emily” behind my back and someone else defended them to my face. Where classmates cackled about the film Even Dwarfs Started Off Small—“because it’s just so awesome to see the midgets going all ape-shit!”—but declined my offer to screen the documentary Dwarfs: Not A Fairy Tale. Where a professor was utterly outraged that her students didn’t seem to care about immigration rights or trans rights, but she never once mentioned disability rights. Where an acquaintance asked to borrow my copy of The Curious Lives of Human Cadavers, but awkwardly turned down my offer to lend her Surgically Shaping Children. Where roommates argued vociferously that they would rather be euthanized than lose the ability to walk. Where jokes about dwarf-tossing were printed in the student newspaper.

I won’t go into certain crude comments that involved me personally, but I will say that when a friend recently, carefully tried to tell me about how shocked he was to find a certain video of dwarfs in a grocery store, I cut him off and said, “Lemme guess, it was a dwarf woman porn video? That’s one of the top search terms that bring people to my blog.”

This is not to ignore all those I’ve met who, despite their lack of experience with disability, ask carefully constructed questions and consistently make me feel not like a curious object but like a friend who is free to speak her mind about any part of her life experience. And some young adults are doing awesome work for disability rights and awareness. But when a journalist and mother of a disabled twentysomething recently said to me, “No one wants to talk about disability rights – it’s not seen as sexy enough,” I knew exactly what she was talking about.

Maybe this is just a matter of my growing up, leaving the cocoon of childhood and finding out how uncaring the world can sometimes be. But ableism among young adults in the form of silence and/or sick fascination is a lot more prevalent than many would like to admit. And why does it have to be? Are physical differences truly not sexy enough? Is it because we associate disabilities, diseases and related issues—like caregiving—with older people and with dependence? Dependence is usually the last thing to be considered cool. But does it have to be?

The Means. As a non-profit organization, Difference Diaries aims to ignite ongoing conversation that will contribute to better lives for those living with defining difference as well as friends, families, and perfect strangers who “just never thought about it.” The young adults who share their stories offer real insights and an opportunity for viewers and readers to know a little more about “what it’s like.”

We focus on conditions as diverse as the individuals living with them including: cancer, hemophilia, dwarfism, sickle-cell anemia, albinism, facial deformity, blindness, HIV, amputee, hemangioma, vitiligo, diabetes, renal disease, Crohn’s disease, cystic fibrosis, cerebral palsy, OCD and more.

This is why we want to hear from you. We are seeking blog submissions about living with Difference as a young adult. Prospective bloggers should consider: What does Difference mean to you? What is your personal experience of being Different? What has to be explained most often at work, school, out in public? What would be the most helpful thing for people to know about your Difference? How would you like to see society improve in how it handles Difference?

Send us your submissions via e-mail to info[at]differencediaries.org



High Schools Fight to Keep Midgets As Mascots

12 Jul



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.


Mother Petitions to End Germany’s Nationwide Youth Games

5 Jul

BXP135660(Image by Tableatny used under CC license via)

The Nationwide Youth Games (Bundesjugendspiele) are a 95-year-old annual tradition here in Germany wherein students ages 6 to 16 spend a day competing against each other in track and field, swimming and gymnastics. The total scores are read off in a ceremony before the entire school, and those who accumulate a certain number of points are awarded either a “certificate of victory” or a “certificate of honor.” Since 1991, “certificates of participation” have been handed out to the rest of the students.

After her son came home sobbing at having received a mere certificate of participation two weeks ago, journalist Christine Finke started an online petition to put an end to the Games. She explains on her blog:

I’m doing this for all the children who feel sick to their stomach the night before the Nationwide Youth Games, for those who wish they could disappear into the ground during the Games, and for those who want to burst into tears during the awards ceremony… Sports should be fun and make you feel good about your body. But the Nationwide Youth Games are founded on grading: on the upgrading and degrading of some at the expense of others’.

She dismisses the Games as a relic of the Nazi era, and while the original Reich Games preceded Hitler, founder Carl Diem did go on to be active member of the regime who instrumentalized the Games as propaganda for the Nazi obsession with bodily perfection. Finke points to the Nazi-like language of her critics on Twitter: “Our children shouldn’t be allowed to turn into sissies.”  Indeed, mottoes such as Only the strong survive commonly found in sports culture in the U.S. and other countries are not taken lightly here in Germany, where sick and disabled citizens were murdered in mass numbers less than a century ago. 

As a semi-disabled kid, I had plenty of physical limitations, but, like most kids, I enjoyed the sports that I could play fairly well (baseball, tennis, jump rope) and I quickly got bored with those that put me at the bottom of the class (basketball, football, soccer).  Due to the vulnerability of the narrow achondroplastic spinal column, I wasn’t ever allowed to participate in gymnastics, and contact sports were forbidden after the age of 10 when my peers began to tower over me.  I countered the feelings of exclusion with feelings of pride for holding the pool record for staying underwater (1 minute 15 seconds), and for surpassing everyone in the joint flexibility tests. But what about the kids whose bodies ensure that they will never surpass anyone else in any competition? The best advice I ever got came from my primary school physical education teacher: “If you had fun, you won.” 

But then came adolescence, and with the onset of puberty, the body suddenly is no longer merely something that gets you from place to place. It becomes an object you are expected to sell to others in the brutal competition of dating and mating. It’s no wonder that an almost debilitating self-consciousness encompasses so many, whether in the form of sitting out of sports, refusing to ever dance or, in extreme cases, developing disordered eating habits.

I asked adult German friends how they felt about the Games. “It is the most humiliating memory I have from school!” one responded.

“It’s more likely to teach people to stay far, far away from sports for the rest of their lives, rather than inspire them to be more physically active,” argued one mother.

“Ach, it wasn’t humiliating,” insisted one man. “It was boring. It was all about skipping out to go smoke cigarettes while the super-athletes had their fun.”

“Exactly!” chimed another. “No one cared about it except the ones who won everything.”

I spent my high school years as the scorekeeper for the girls’ volleyball team at the urging of one of the two coaches, whom I both admired greatly. Throughout three years of volleyball games, I witnessed edifying examples of cooperation and self-confidence, and I witnessed a lot of childishness and borderline cruelty from overemotional adults as well as teens.

From that time on, I’ve generally viewed competitive sports the same way most people view rodeos or yodeling clubs – i.e., good for you if you derive joy from that sort of thing, but the competitions and the medals say nothing to me about whether or not you’re a lovely person. 

Of course athletic achievement can signify important life skills like self-discipline and team work, as a recent Michigan State University study has found. But sports are not necessary for developing those skills. Self-discipline can also be demonstrated by reading two books a week or vowing to learn a foreign language and actually doing it.  Tolerance, self-confidence and decisiveness has been shown to increase among students who study abroad.  Team work can be learned from playing in a band.  Or, as LeVar Burton taught us on Reading Rainbow, an aerobics-inspired dance troupe. 

In arguing to keep the Games, physical education teacher Günter Stibbe says, “Sports are brutal, of course.  But students have to learn how to deal with humiliation.”

Indeed, narcissism is characterized not just by excessive bragging but also by reacting badly to criticism or failure.  Performing poorly in sports—or in any field—can be an opportunity to learn to accept all the moments in life when you won’t be seen as special. But the idea that the body is only worth what it can do is deleterious. And too many educators fail to teach students the dangers of being too competitive and fearing weakness

The heavier burden may in fact fall on those who come out on top in high school and risk later panicking when they learn that the big wide world doesn’t really care about how many points they accrued in the discus throw back when they were 16.  Both the losers and the winners would benefit from learning that athletic competitions in youth are no more important than rodeos or yodeling competitions at any time in your life.  After all, points and medals are no indication of whether or not you’ll know how to pursue healthy relationships, be a responsible member of your family and community, or find a fulfilling career. Those who heavily brag on into adulthood about how hard they just worked out down at the gym—or how many books they read, or how much they earn—usually appear to be compensating.

This is perhaps why Stibbe criticizes the tradition of reading of the scores in front of the whole school as “pedagogically irresponsible.”

But in Der Spiegel’s online survey, there is no option for arguing for the Games on the grounds of sportsmanship and accepting one’s limitations. The two arguments to click on to support the tradition are “For God’s sake! It was the only thing I was ever good at in school!” and “What else would we do with our crumbling race tracks?” The majority of the 57,000+ respondents chose the latter.



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

28 Jun

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


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

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

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

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

* * *

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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



No One Should Be Proud to Wave That Flag

21 Jun

222 - Columbia, South Carolina(Image by Eyeliam used under CC license via)


Back at the beginning of the millennium, the news was a-twitter with a lukewarm debate about whether or not South Carolina should keep the Confederate flag flying over its capitol building. I was in high school at the time and assigned to argue the issue from the side of the flag-supporters in history class. I read about truck-driving good old boys who emblazoned the stars-and-bars across their bumpers because it’s not about hate, it’s about heritage. It’s about honoring our great-great-grandfathers who were sent off to fight and die in the bloodiest war in American history, they insisted, and most of our ancestors never owned slaves. The epic novel Cold Mountain was topping the bestsellers lists at the time and echoed this sentiment, portraying the war as a senseless tragedy and most Confederate soldiers as confused young boys who merely wanted to fight for local honor.

While these arguments did convince me that many flag-wavers of modern times do not share the racist agenda of others, I argued for the flag in the debate on a technicality. (There wasn’t enough support to remove the flag in the state legislature, and such a move could not bypass the legislature, etc., etc., etc.)

Years later, the issue arose again in a college class, where there was little sympathy for the flag-wavers.

“What about the point that it’s just about honoring the fallen soldiers and Southern heritage?” I asked.

The only black student in the class replied, “I’m from the South and black people are just as much part of Southern heritage as anyone else, and we are not represented by that flag. The Confederacy fought to keep blacks separate from whites and that flag certainly does that.”

Point taken.

Fast-forward a few years later to a birthday bash at my apartment here in Berlin. A friend of a friend is saying goodbye to me and the other hosts, and someone notices a button pinned to the jacket of the date she brought along.

“What’s that?” my friend asks, pointing.

The guy holds up the button and replies nonchalantly, “White power.”

We are all speechless as he turns and leaves.

One friend can’t stop glaring at the spot where the guy used to be. Neo-Nazism has been on the rise where he comes from – that is, the former East Germany – ever since mass unemployment followed the fall of the Wall.  That kid was simply one of many who grew up in shrinking towns with few prospects and who had decided to transform his frustration into racial pride.

What should we have said to him had we not been so paralyzed with shock?

That the button is not okay.

That bronze plaques just a few doors down from my apartment mark where Jewish people were dragged from their homes and shipped off to be murdered in Latvia.

That of course most young swastika-wavers didn’t ever set foot anywhere near a concentration camp.

That to them, in the words of one German friend’s grandmother, the Nazis were about “organizing nice get-togethers for the young people and the local community. Most of them weren’t killers!”

That another friend’s grandfather said, “I never had anything against the Jews. I always said hello to my Jewish neighbors!”

That you don’t have to watch Judgment At Nuremberg to know that the best way to allow genocide and ethnic cleansing and slavery and other human rights atrocities to happen is to encourage everyday people to shrug off arrests and killings as “unfortunate tragedy,” to encourage them to sit comfortably with their prejudices while insisting, “I wouldn’t personally harm anyone,“ and,  “We couldn’t do anything about it if we wanted to!”

Not one of my German friends would ever wear Nazi insignia to honor their country’s history or their grandfathers, many of whom were confused young boys hauled off to the battlefields, convinced they were simply fighting for their nation’s honor.

Those who do wear such paraphernalia are most often found in the modern Nationalist Party of Germany, which today lists “getting over the Holocaust” as one of its main political goals. We’ve apologized enough! they insist. All this complaining about Nazi Germany is overdone! White guilt is the real problem of our times.

Several of these goals are shared by the Council of Conservative Citizens, which years ago presented France’s National Front party with a Confederate flag from the South Carolina state capitol, which right-wing pundit Ann Coulter argues is “not a racist” organization, which Dylann Storm Roof cites in his manifesto as the first organization he referenced at the beginning of his militancy.

Moments after the kid and his white power button were gone, a German friend finally sighed, “That’s an embarrassment to my generation.”

And Dylann Storm Roof’s agenda is an embarrassment to mine.

I’m not directly responsible for his actions. But I’m an heir to the last Western country to abolish slavery on its soil. And I’m the beneficiary of loads of white privilege in the U.S. and around the world. And I belong to a generation whose ignorance about racism is perhaps the greatest facilitator of it.  As Gene Demby of Codeswitch notes:

Roof will read to many as some sort of fossilized outlier, a remnant of a vanishing tribe…

[But] it turns out that even as this generation is on the whole “cool” with interracial marriage and dating, there’s a lot of daylight between the way white millennials and those of color feel about a bunch of other questions about race… Young white people were nearly twice as likely to say that the government pays too much attention to the problems of racial minority groups. They were also nearly twice as likely to say that discrimination against white people has become as big a problem as discrimination against minorities…

In the Oxford journal Public Opinion Quarterly, researcher Vincent Hutching combed through public opinion surveys taken before and after several presidential elections and found that “younger cohorts of whites are no more racially liberal in 2008 than they were in 1988.”

And really, why would they be? America’s public schools are more segregated now than they were 40 years ago. Americans continue to live in very different worlds; a 2011 study showed that ethnic identity outranked income as a predictor of where people live…

There’s also good data suggesting that white millennials have a far rosier view on race relations than their contemporaries of color. This too makes sense when you think about the schools, the stark housing segregation, the fact that on average white people have hardly any friends of color, and, perhaps more importantly than we realize, the fact that they just don’t have much experience talking about this stuff. (In fact, it’s safe to assume that Roof has spent far more time discussing race than most people his age.) As Politico’s Sean McElwee put it, the data that’s out there “suggests that millennials aren’t racially tolerant, they’re racially apathetic: They simply ignore structural racism rather than try to fix it.” …

A big Pew study on multiracial Americans released in June found that most of the country’s multiracial adults are likely to identify with one race — usually a non-white one — often because of their own experiences with race-based discrimination.

Indeed, I grew up frequently believing racism was a thing of the past, unaware that my white privilege was what permitted me to do so. I winced but did not reflect when I heard classmates say, “I don’t get what black people’s problem is. I mean, what more do they want?”

Three weeks ago, North Carolina high school students on a trip to the Gettysburg battlefield took some selfies with the Confederate flag, titled them “South will rise,” and uploaded them to Instagram. After garnering racist remarks (“I just bought my first slave”) and then finally outrage, the poster issued a non-apology:

I’m sorry that my picture offended people and especially since my initial caption (that I changed once I realized people took it seriously), but I’m currently on the Civil War trip learning about the history of our country and this just so happens to be a pretty fucking important part of it. We were reenacting Pickett’s charge in which the South lost 85% of their soldiers. These aren’t the Confederate flags in fact, they’re the North Carolina regimental flags. I’m proud to be a part of my state and I’m sorry my photo was so offensive but I find it appropriate in that I’m honoring heroes that fought to protect their home and families.

We cannot take credit for our ancestors’ achievements if we refuse to learn from their failures.

The plaques near my apartment were hammered into the pavement of our street to say one thing to everyone who passes by: Never again. You don’t have to consider the differences between the Holocaust and the American slave trade to know that both count among the darkest episodes in human history.

You don’t have to consider the difference between casual racist remarks and full-blown hate crimes to know that they enable each other. Roof has proven himself to be a bloodthirsty killer. He is also a high-school dropout craving something to believe in, and ended up drawn to white supremacy. And there are many, many like him throughout the United States, here in Germany, and around the world. If we do not confront the insidious ideas they are willing to kill for, if we do not address the newly uncovered fact that blacks shot by police in the U.S. are more than twice as likely as whites to be unarmed, if we don’t get flag-wavers to listen to those they frighten, then we are doomed to witness this happen again and again.


Why Do Names for Minorities Keep Changing?

14 Jun

midget not wanted(Image by CN used under CC license 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 it’s 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.   



Interview on Berlin Television

6 Jun

©Ines Barwig(Image ©Ines Barwig)


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

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





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