On Catcalls, Body Types & Lasting Love

25 Sep

My latest article, “Disabling the Male Gaze: ‘Longing’ to Be Objectified Won’t Shatter Narrow Beauty Standards” is featured this weekend at Salon. It’s a rebuttal to a recent piece in The New York Times ongoing series on Disability.

 

 

When We Ignore Clinical Trials, We Ignore the People They Protect

11 Sep

Mime/Sleep(Image by Del May used under CC 2.0 via)

 
Back pain is one of the most common causes of sick leave in many Western countries. It is also one of the most common symptoms of achondroplastic dwarfism. The severe curvature of the spine coupled with innate hypotonia (i.e., low muscle tone) results in chronic pain from birth on, at times requiring back-braces and/or surgery to avoid debilitating complications.

I recall being younger than five-years-old, sitting cross-legged on the floor with a book and knowing I couldn’t stay like that for more than a minute or so before the aches would begin. I would usually end up slinking toward the sofa. In primary school I was exempted from sitting on the floor, given a chair with which to tower over my classmates during story-time. Years of physical therapy and orthopedic consultations have done little to alter this reality because the curvature is anatomic. Exercises and ergonomic furniture make the difference between utterly unbearable pain and merely lingering pain. At the end of a three-week stay in Tokyo, I wrote to my partner, “I will miss so many things about this city. Things I will be happy to come home to: couches, chairs with backs, toilets with seats, back support in general.”

A fascinating interview with architect Witold Rybczynski appearing last month in The Atlantic chronicled the history of the chair and the differences between cultures in which people primarily sit on chairs and those in which people, like the Japanese, primarily sit on the floor. The reason for the dichotomy continues to elude researchers:

You’d think, for example, that people in cold, wet climates would be more likely to sit on chairs, so as to avoid the unpleasant ground. But the Japanese, who endure frigid winters, have traditionally sat on floor mats, while the ancient Egyptians, who lived in a warm, dry climate, are thought to have invented the folding stool. Nor is chair-sitting necessarily a matter of lifestyle; some nomadic groups move about with collapsible furniture, while others don’t. Nor is it always a product of economic or technological advancement; the prosperous Japanese were long aware that people in other parts of the world sat on chairs—they just chose not to. Some societies, like China, have transitioned from being predominantly floor-sitting cultures to being predominantly chair-sitting cultures. Others, like India, idiosyncratically mix the two approaches.

California-based acupuncturist Esther Gokhale believes that members of most floor-sitting cultures do not suffer as much back pain as those of us in chair-sitting cultures. National Public Radio’s Goats and Soda program interviewed Gokhale in June about a series of exercises she developed—the Gokhale Method—intended to reshape the Western human spine and rid sufferers of back pain. Doctors in the San Francisco Bay area have been referring patients to Gokhale, and several celebrities have followed suit, despite that her method has not yet been clinically tested. Dr. Neeta Jain demands, “If people are finding things that are helpful, and it’s not causing any harm, then why do we have to wait for a trial?

We should wait for many clinical trials because they would prove decisively whether or not the method is causing any invisible harm, and it would control for preexisting conditions like achondroplasia, cerebral palsy or lupus. While there is no proof that Gokhale’s method cannot lessen back pain for people with achondroplasia, there is also no proof that her one-size-fits-all approach cannot cause more pain or injury to people with achondroplasia as many exercises developed for average bodies can.

As a doctor, Jain is in a position of authority and she is acting irresponsibly when she fails to acknowledge the possibility of unforeseen risks. Perhaps she only refers her patients to Gokhale after screening them for potentially complicating factors, but her statement excludes such caution and instead serves as an advertising slogan.

Perhaps the greatest achievements of modern medicine has been its ability to serve not only the general population but those with rare and exceptionally complex conditions. Yet advice found in the health sections of any mainstream news source tends to overlook those of us with rare conditions and official disabilities. This is a truly ironic form of marginalization, since our lives have undoubtedly been far more affected by issues of health and medicine than the average reader. Going so far as to call it ableism seems extreme, since space is limited from a journalist’s point of view. But it is unfortunate that the best health advice for most people with disabilities is to ignore the mainstream health sources that ignore them.

 

 

Frozen Sperm & the Slippery Idea of Increased Risk

21 Aug

Hanging bodies(Image by Gillie Rhodes used under CC 2.0 via)
 
As long as people do not want to have children, or certain types of children, they will search for a way to avoid it. In a recent CNN report on reasons why a small but growing number young men have been freezing their sperm, achondroplasia was listed as one of the conditions the risk for which is associated with advanced paternal age. While the report cites single studies finding an increased risk for various conditions and disorders, many studies over the past two decades have linked achondroplasia to advanced paternal age. (Perhaps Mick Jagger should educate himself, if he hasn’t already.)

Most people with achondroplastic dwarfism are born to non-achondroplastic parents like mine. (“Are you parents little, too?” is one of the most common questions I get from strangers.) Most of us grew up told that our genetic mutation could not be traced to any known source. That is now changing, as news networks repeat the link to advanced paternal age.

My father was 28-years-old when I was born, hardly what we in the West think of when we envision advanced paternal age. All but one of my friends with achondroplasia have parents that were roughly the same age as my own when they were born: that is, late 20s or early 30s. And the majority of my friends with achondroplasia are first-borns.

Anecdotal evidence is often rife with bias, so I cannot officially dispute the researchers’ findings. Perhaps my friends and I are simply exceptions to the rule just like every smoker can name someone who beat the odds and puffed their way to age 95. But my personal experience easily invalidates any argument that men who freeze their sperm in their 20s or 30s are on a clear path to avoiding fathering a child with achondroplasia.

Bioethicists are divided on whether or not to advise men to freeze their sperm to avoid various conditions. Regardless of the answer, men should hear that the statistics on achondroplasia and age risk imbuing them with an inflated sense of control. One could say most forms of genetic counseling do.    

 

 

Can Playing R2D2 Be Taken Seriously?

14 Aug

R2D2(Image by Dr. Case used under CC 2.0 via)
 

British actor Kenny Baker, best known as the puppeteer who operated from inside the costume of Star Wars’ R2D2, passed away yesterday. Baker performed in six of the Star Wars films. His death is the second this year by a dwarf actor who performed a fairly well-known, non-human character. Michu Meszaros, who appeared on screen as the walking version of the alien Alf, passed away in June.

A tribute to Meszaros’s work in Germany’s (highly regarded) Süddeutsche Zeitung sparked an outcry among the German dwarf community. The offending lines include:

Meszaros was only approximately 84 cm tall. Such little people were a topic of discussion even way back in Ancient Egypt.

Dwarfs give us a thrill because they emit a fairytale-like magic. Because they give the impression of an adult that’s been stuck a child’s body. Because they move just as funnily as the gawky Stan Laurel or Jacques Tati. Because their voices squeak as if they had inhaled helium.

Dwarfs’ pitch is usually higher than women’s. This is impressive to anyone who has overcome their own voice cracking.

A backlash went viral with the hashtag #keinZwerg (“not a dwarf”). While the sentiment of the movement was nothing but admirable, linguistic differences rendered the issue a bit more complicated for this bilingual woman with dwarfism. (More on the politics of the word “dwarf” here and here.)

And perhaps predictably, the lesson learned by the offenders remained superficial rather than deeply reflective: The Süddeutssche Zeitung issued an apology for using the word “Zwerg” and replaced it with “Kleinwüchsige” (“short-statured”) in the online version of the article.

Most tributes to Baker today have simply stated the facts of his life and death, with a quotation by George Lucas:

Kenny Baker was a real gentleman as well as an incredible trooper who always worked hard under difficult circumstances. A talented vaudevillian who could always make everybody laugh, Kenny was truly the heart and soul of R2-D2 and will be missed by all his fans and everyone who knew him.

I have written before about my visceral discomfort with the type of work Baker did, because such roles do not combat the stereotype of people with dwarfism as little more than props. But Lucas speaks of Baker’s work with the same respect the Jim Henson Company has expressed for the actors who have romped around in their outrageous costumes in order to portray the likes of the Ghost of Christmas Present and Big Bird.

Which begs the question: Can a career in circus performing and puppeteering based on body type elicit respect from the general public? Or will it be doomed to elicit smirks and giggles, from the open to the suppressed?

 

 

What’s the Point of Nationalism?

3 Jul

 
Brexit(Public Domain Image from Freestocks.org)

 

The National Police Chiefs Council reports hate crimes in the United Kingdom have increased fivefold in the days following the vote for Brexit. A Polish waitress was asked by two customers, “Why do you look so happy? You’re going home.” A German woman found dog excrement thrown at the door to her home. Bilingual cards reading, “Leave the EU – No more Polish vermin” were distributed in Cambridgeshire. Some Central Europeans and non-white Britons have been harassed on the street, others have had to evacuate their residences after threats. 

Paul Bagguley, a sociologist at the University of Leeds told The Guardian:

There is a kind of celebration going on; it’s a celebratory racism…  People haven’t changed. I would argue the country splits into two-thirds to three-quarters of people being tolerant and a quarter to a third being intolerant. And a section of that third have become emboldened. At other times, people are polite and rub along.

While politicians argue about whether or not such incidents accurately represent the Brexit movement and its anti-immigration platform, no one can deny that belligerent nationalists have felt empowered by Brexit to say what they have been feeling about foreigners for a long time.

It may be nigh impossible to publicly reason with extremists – such as those who fire-bombed a halal butchery and the white supremacist who murdered Jo Cox. But it is essential to engage with anyone in the mainstream who may agree with their politics if not their tactics. So in the wake of all this, not to mention the Fourth of July, it bears asking, what is the point of nationalism? 

British political scientist Benedict Anderson called nationalities “imagined communities” because being American or German or British is all in the mind. No Briton will ever manage to get to know—let alone meet—all of his other 65 million fellow British citizens. In fact, he won’t ever meet a majority of them. But nationalism urges him to feel connected to them, and specifically more connected to all of them, across the country and overseas, than to anyone in Ireland or France, or to any Polish or German or Japanese people who live two doors down from him.

Sociologist Patricia Hogwood argues there are two models of nationalism states can choose from: the Nation of Culture and the Nation of the Constitution. The Nation of Culture, first made popular in the 19th century, determines citizenship by supposedly uniting millions through a common language, religion, arts, sports, holidays, traditions, and appearance. To be German means to speak German, belong to the Lutheran Church, read Goethe and the Grimm fairy tales, love beer and sausages, celebrate Christmas and Oktoberfest, and be tall and blond.    

With an exception made for those who are short with thick dark mustaches. And those who love döner kebab and hate Oktoberfest. (It’s Bavarian after all.) And those who speak Sorbian or Swabian as their first language. Not to mention those millions who are Catholic. Or Muslim. Or Jewish. Indeed, Nazism and the Holocaust was nothing if not a crisis of German identity, an attempt to dictate who was allowed to live in Germany on the basis of culture.

The Nation of Culture is a fallacy because no nation on earth is monocultural. Even bite-sized Luxembourg has three official languages, plus 30% of its residents are immigrants whose first languages is Portuguese, Italian or English. For all the jokes about the superiority of the Queen’s English to the American variant, the British Isles contain 11 living indigenous languages. Not long ago speakers of many of those languages faced the same sort of adversity documented in the past week in Britain against Central Europeans and non-whites. A Nation of Culture encourages the touting of one set of traditions, fashions and physical features while ignoring, or silencing, all others.

In a Nation of the Constitution, membership is defined by one’s adherence to the laws and rights guaranteed by a government’s founding documents. Which is what the European Union aims to be: an unabashedly diverse union of states united by a commitment to democracy and the European peace project. (Access to the European single market, the world’s largest, is ideally the reward, not the goal.) Member states must ensure the rule of law, freedom of the press, free trade union organizations, no capital punishment, equal protection of all minorities, and for all citizens the guarantee of freedom of personal opinion, the right to a secret ballot in free and fair elections at every governing level, and the rights listed in the European Convention on Human Rights. 

While many of these rights have long been preserved in Great Britain, they are less than 50 years old in Spain, Portugal, Greece, and the former Soviet Bloc countries. (And, contrary to common knowledge, the E.U. has expanded rights for women in the U.K. as well.) Turkey and Albania are both candidates for E.U. membership. A cultural model of membership might block their applications on the basis of their Muslim populations, while a constitutional model of membership instead demands improvement on their human rights records.

The E.U. has plenty of work to do in improving its implementation of human rights protections and anti-corruption laws, as in cases like Greece. But it is unwavering in its demands that members must openly recognize and celebrate their cultural diversity without clashing over it, in the same way New Yorkers can make fun of Californians for being loopy, passive-aggressive, granola-crunching, up-talking airheads and Californians can make fun of New Yorkers for being tactless, aggressive-aggressive, materialistic, shouting hotheads without going to war over it. Indeed, the most enthusiastic supporters of the E.U. often speak of its members some day becoming as open and close-knit as the fifty States across the Atlantic.

Generation Euro is, as one New York Times journalist put it, one that thinks nothing of “growing up in one country, studying in another, and living in a third.” When such intermingling does not outright prevent someone’s xenophobia, it forces them to confront it head-on. As reported in 2014, one million children have been born since 1987 as a result of the European study abroad program – that is, these children were born to parents who met because one of them was taking part in the program. This leads to multilingual families with multicultural social circles who bring diverse perspectives to the table when politics and the solutions for the world’s problems come under discussion. 

It may sound idealistic if not saccharine, but a mere glance at the last 1,500 years on the continent—battle after bloody battle of Protestants vs. Catholics, capitalists vs. communists, fascists vs. democrats, Belfast vs. Belfast, Nazis vs. everyone—should forever be a reminder that the European peace project can never be taken for granted. It’s a project that makes a lot more sense than any model of cultural nationalism.

 

 

There’s More Than One Way To Make A Nerd

19 Jun

There are some books one can't put down…..(Image by Dave McSpadden used under CC 2.0 via)

From the Archives

 

Can we stop using the words “nerd” and “geek” interchangeably? Forgive me if this doesn’t sound like the most pressing social justice issue of our time, but hear me out. I think the distinction is subtle but significant. 

Geeks are a subculture. They like science fiction usually because it’s built around ideas posed by math and the natural sciences, just as literature is built around ideas posed by the humanities. If you don’t have a big appetite for Star Trek, the Hitchhiker’s Guides, or video games, you’re probably not a geek. Just like if you don’t enjoy nature, long hair, or folk rock music, you’re probably not a hippie.

Nerds, in contrast, simply share one trait: wanting to learn almost everything there is to know about a subject at the expense of their cool factor. And it seems to me that there’s a little nerd in all of us. From trivia and statistics to random factoids, a nerd examines a topic down to what Slate calls “the granularity that would glaze the eyes of a normal, well-adjusted human.” Sometimes the eye-rolling this brings on is fueled by inane rules for style that value keeping the lowest common denominator very low. But anyone with social intelligence knows that it’s also unfair to demand everyone share your love for a subject, no matter what it is. 

I try not to look bored when friends expound upon existentialism, or when my dad gets excited about weather statistics, but I can likewise put them to sleep with monologues about typography or Russian grammar. I have a hard time looking thrilled when my husband analyzes the meal he cooked for us in too much detail, or when my uncle gets out his car magazines, but I get the same looks from outsiders whenever I discover a fellow classic rock fanatic. An obsession with trivia—in any area—will forever be the opposite of a social lubricant. Saying, “I’m such a nerd” with a sheepish grin usually means, “I love something to a degree that might ruin the evening if you ask me about it.”

But traditionally, the nerd word is used much more specifically. Nerd hobbies are thought to be geeky. Nerd intelligence almost always means “book smart.” The Urban Dictionary says a nerd is “one whose IQ exceeds his weight.” A gardener and a mechanic can be skilled, but only botanists and engineers can be nerds. Why? 

One summer in my early teens, I was sunbathing at a friend’s house and talking about the new atlas I had bought. “I’m hoping that someday I can identify all the flags of the world,” I smiled, with perhaps a bit too much enthusiasm.   

My friend’s mother frowned and asked, “Why?! Just to be better than everyone else?”

She knew how to repair a motorcycle. I knew the names of the world’s nations. Why was my knowledge automatically seen as a pretension? (I was too embarrassed and too young to dare to ask her, but I wish I had.)

A lot of it has to do with social status, however ridiculous that is. We tend to see bookish people as the inventors of ideas and therefore the brains. People working in production and maintenance are the realizers of the ideas and therefore the salt of the earth. Artists are classified depending on which of these two groups they appeal to: Classical composers and jazz musicians make high art for the “elite,” while rappers and country singers make soul for “the people.” (Artists who appeal to both are gods and everyone wants to sleep with them.)    

Self-proclaimed nerds sometimes defend these rigid categories, reassuring themselves that the only reason anyone would malign their expertise is meat-headed jealousy. This is certainly true in many cases. The stereotypical anti-intellectual will lash out when someone’s way of life threatens to highlight his weaknesses. But the stereotypical ivory tower snob will sneer when someone’s way of life threatens to highlight his weaknesses.  Both the belligerent athlete and the arrogant mathlete lack the emotional intelligence to recognize that both trigonometry and football require brains. Both topics can be obsessed over in nauseating detail. But Western society—which places an inordinate emphasis on IQ—has yet to be convinced of this. IQ tests define “intelligence” as strong mathematic and/or verbal skills, and so do most of us when we describe someone as “smart.” This is wildly inaccurate and unhelpful.

Howard Gardner’s theory of multiple intelligences turns 30 this year, but we have yet to adopt the concept into our common parlance. The theory currently identifies seven forms of intelligence:

1) Logical-Mathematical Intelligence – useful to chemists, accountants, physicists  

2) Linguistic Intelligence – useful to writers, speech therapists, managers

3) Kinesthetic Intelligence –  useful to athletes, surgeons, carpenters

4) Visual/Spatial Intelligence – useful to photographers, architects, engineers

5) Musical Intelligence – useful to composers, dancers, poets

6) Interpersonal Intelligence – useful to counselors, salespeople, politicians

7) Intrapersonal/Introspective Intelligence – useful to philosophers, artists, parents

(Some groups have promulgated a theory of Culinary Intelligence, as well as Sexual Intelligence.) 

So there are more than two ways to be “smart.” It seems logical to conclude that people choose their jobs based on combinations of intelligences. A speech therapist needs both linguistic and interpersonal intelligence, whereas a songwriter needs linguistic and musical intelligence. A dancer needs musical and kinesthetic intelligence, while a soldier needs kinesthetic and spatial intelligence. Take that, IQ tests.

But this shouldn’t come as a big surprise. Every one of us knows someone who’s read a hundred books but can’t fill out a tax form. Or who can identify every bit of green in your backyard but can’t analyze news stories in a historical context. Or who can counsel people with all sorts of problems but can’t dance for the life of them. Or who can sew the coolest costumes but can’t make strangers feel comfortable. We should all be big enough to take pride in our talents and to be teased for our weaknesses. Especially if we’re going to start fully accepting people with certain disabilities.

The theory of multiple intelligences does not claim that everyone is a genius in their own way. Everyone knows a good guitarist isn’t as smart as a great guitarist. But the theory asserts that a great guitarist is no smarter than a great nurse or a great ballerina or a great chemist. So why then do we call the chemist “smart” and the others “talented”? 

And why isn’t the soccer nut who won’t stop analyzing the semi-final games called a nerd? Why isn’t the housewife who goes on and on about how to master pie crust recipes called a nerd? Maybe it’s because these activities are socially condoned: A guy is expected to love sports and a housewife is expected to love baking. Maybe by choosing less socially accepted hobbies, people of high IQ monopolize the term “smart” as a consolation prize.  Maybe the term “nerd” still carries too much stigma for socialites to desire it. Maybe if we broaden the use of these words, maybe if everyone recognizes their inner nerd, then maybe some social barriers will be knocked down along the way.

I’m not expecting utopian results. We’re all doomed to clash over our passions because no one can be expected to obsess over the intricacies of every subject on earth. Whenever I get together with a friend who works as a computer programmer, it’s a fight over whether we play games that reward strategy (like Monopoly), or games that reward vocabulary (like Scattergories). He’s geekier than I am, but he’s not nerdier. In any case, I always get my way because I’m bossier.

Originally published January 13, 2013

 

 

Can Hobbits Be Human?

12 Jun

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

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

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

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

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

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

 

 

The Bathroom Debate and the Pursuit of Personal Comfort

5 Jun

gender_neutral_toilets_gu
 
Cisgender people have been sharing bathrooms with transgender people throughout history, whether they have been aware of it or not. So when conservative groups across the United States mobilized this spring to draft bathroom bills, demanding all citizens use public facilities “according to the sex on their birth certificates,” most people I know responded with a head shake and a shrug, summed up best by this meme.

Comedian Stephen Colbert declared on his show, “To all those lawmakers out there who are so obsessed with who’s using what bathroom and what plumbing they’ve got downtown? Newsflash: You’re the weirdos.”

Here in Berlin, unisex bathrooms have been on the rise over the past three years in parts of the city and federal buildings. (As seen in the image above.) Some citizens have expressed their outrage to reporters. Most have shrugged.

But in the U.S., the issue has been taken to court. When North Carolina became the first state to pass a bathroom bill in March, the federal government sued the state for non-compliance with anti-discrimination laws, and the Department of Education issued guidelines to schools nationwide for compliance regarding bathrooms and locker rooms. Attorney General (and North Carolina native) Loretta Lynch argued:

This is not the first time that we have seen discriminatory responses to historic moments of progress for our nation. We saw it in the Jim Crow laws that followed the Emancipation Proclamation. We saw it in fierce and widespread resistance to Brown v. Board of Education. And we saw it in the proliferation of state bans on same-sex unions intended to stifle any hope that gay and lesbian Americans might one day be afforded the right to marry. That right, of course, is now recognized as a guarantee embedded in our Constitution, and in the wake of that historic triumph, we have seen bill after bill in state after state taking aim at the LGBT community. Some of these responses reflect a recognizably human fear of the unknown, and a discomfort with the uncertainty of change. But this is not a time to act out of fear…

Let me speak now to the people of the great state, the beautiful state, my state of North Carolina. You’ve been told that this law protects vulnerable populations from harm – but that just is not the case. Instead, what this law does is inflict further indignity on a population that has already suffered far more than its fair share. This law provides no benefit to society – all it does is harm innocent Americans.

Conservative groups have fired back. Eleven states are suing the federal government. Matt Sharp, the lawyer for a faith-based legal group Alliance Defending Freedom argued on National Public Radio:

And so we’ve got several families there that the Obama administration came in and forced the District 211 to allow a biological boy into the female’s restrooms. And so these girls are telling stories about how when they’re in their locker room changing for PE, they’re now uncomfortable knowing that a boy can walk in at any time under the school’s new policy. They talk about how one girl in particular does not change out of her gym clothes but rather wears them all day long, wears them after going to gym, after getting them dirty and nasty through PE class and then just puts her clothes on top of it because she’s so nervous about the possibility of having to change and shower and whatnot in front of this boy. And we hear stories like that across the country of these girls speaking out and saying, look, we don’t want this student to be bullied or harassed or anything, but we also want our privacy protected. And we just want to know that when we go into these lockers and shower rooms that we’re not going to be forced to share with someone of the opposite biological sex. That’s all these girls are asking for.

If we want to “protect” women in bathrooms and locker rooms from the presence of people who could be attracted to them, then we have to pretend lesbians do not exist. Or stamp out homosexuality altogether. We’ve tried both. Many times. It didn’t work. And countless people suffered.

If we want to assign people to bathrooms and locker rooms based on “the gender on their birth certificates,” then we have to pretend that intersex people don’t exist. Approximately 1 in every 2,000 people are born with sex characteristics that do not correspond with the traditional Western categories of male or female. Surgeries intended to “normalize” the appearance often cost the patient sensation and function. That few of us ever learn about the prevalence of such bodies in our biology classes at school—let alone anywhere else—is a testament to the Western World’s strong tradition of ignoring the evidence that questions the gender binary.

While conservatives argue on the shaky basis of common sense and personal comfort, our personal comfort is so often inculcated in us by our culture. Multiculturalism can increase conflict, but also open minds on both sides. In 2013, a devout Muslim student sued her school in central Germany over her right to be exempt from co-ed swim class on religious grounds. The court ruled that the right to religious freedom includes the right to adhere to a Muslim principle of modesty by wearing a burqini, but that it does not extend to being exempt from swim class and the knowledge of what boys look like in swimming trunks.

Here in the former East Germany, nudism is widely accepted at the beach. It’s not uncommon to see teens and senior citizens alike strip down for a quick dip in a lake at a park. While West Germans often find that a bit strange, they shrug at the fact that public saunas are unisex across the nation. Visitors from around the world, from Japan to the U.K., famously have a hard time accepting this.

Which is why I do not believe all of America will embrace such liberal values any time soon. And yet, 100 years ago mainstream American men and women alike were aghast at the idea of bare female ankles. And bathing suits looked much more like burqinis than anything the mainstream dons today.

After all, if you want to make a Northern European laugh, just tell them that mermaids in the U.S. are always depicted wearing seashells.

When society’s traditions clash with a person’s reality, one of the two will have to change. The moral question is: Who suffers more in the change? Demanding a trans woman use the men’s bathroom because she has an x and a y chromosome puts her at very real risk for harassment and assault. And any person, cis or trans, who is denied their gender identity is at risk for a wide range of horrific experiences. For society to change, we must learn to accept the unalterable fact of human gender diversity with a willingness to learn about it, so that our descendants may someday look upon it the same way we look upon exposed ankles. History implies we are capable of that.

 
 

On Using the “I Have A Friend/Sister/Coworker Who Is A…” Argument

29 May

light parade EXPLORED! (Image by Ashley Norquist used under CC 2.0 via)
 
It was one of those conversations where you bare all because you feel you have nothing to lose. A recent, unexpected statement about my dwarfism voiced to me by someone in a position of power had brought me to tears.  Three decades of being insulted both directly and behind my back by people I know, and indirectly by many of my heroes—from John Lennon to Stephen Colbert—had left me thinking that I had heard it all and was above it all. But this had left me shaken. My friend Dee, who does not have dwarfism, cracked open two beers and examined with me the best way to deal with the insidiousness of certain prejudices.

Those of us with achondroplastic dwarfism are roughly 1 in every 40,000 people, but Dee himself has heard demeaning comments about dwarfs with far greater frequency. When confronting such remarks, he argued:

I wouldn’t use the “I have a friend who is a dwarf” argument. Because it would sound like I only care about the issue because I have a friend who could be hurt by it. It doesn’t convince other people because it doesn’t force them to examine why the idea is cruel. It just makes them think, “Well, I’ll be sure not to say that around him anymore because he’s touchy about it because of his friend…” Instead I play dumb. I keep asking them, “Why? I don’t get what you’re saying.” And they can never explain why.

I had never considered this before. Many people use the “I have a friend who is…” argument in the hopes that this might illustrate to the ignorant that such people are everywhere – that they are our friends and siblings and partners, not just oddities we get to abstractly pick apart in headlines and on TV. Yet that’s not what others hear.

And members of a given group often do not appreciate exaggerated claims of expertise on the issue via association. Madonna and Bill de Blasio, both white parents of non-white people, have been lambasted in the past year for publicly cracking black jokes that fell flat. NPR’s Karen Grigsby Bates explained it best when she wrote:

Even though you’re dearly loved by and even related to black people, you aren’t black. You are NBA — Negro By Association — and that gives you props for knowing the culture and lots of little intracultural folkways. But it doesn’t give you a get-out-of-jail card for using phrases like C.P. Time. Especially in mixed company, in public.

The Kinfolk Kollective has argued that white parents of adopted black children must always be ready and willing to understand a perspective they simply do not have and to stand corrected when necessary. When such a willingness is absent, the issue is not at all about opening minds but the desire for insider expertise.

And “I’ve dated someone who is…” is not a solid argument—neither in defending the minority in question nor one’s own character—because simply having dated someone is no guarantee of true understanding. Not only are exes the last kind of people we tend to regard fairly, but so many people of minority status must face the risk that their date sees them as little more than a fetish – as in “I’ve always wanted to f*** a little person!” 

And yet, in order stop rampant prejudice in its tracks, these issues must be talked about by those who are not experts. Journalists and writers like myself speak on behalf of all sorts of groups without belonging to them. The results are, of course, mixed.  

In the film, Stories We Tell, producer Harry Gulkin argues that the truth about any issue cannot be found by giving equal weight to the perspectives of everyone involved in any way. There are, he argues, three circles of knowledge: The first, innermost circle comprises the people who are the players involved in the issue, the second comprises those who are directly affected by the players and their actions, and the third comprises those who tangentially know about it because they have heard accounts from those in the first or second circle. This theory applies easily to the experience of someone considered Different by their society and the other lives affected by the attention society affords it. Using the example of disability:

First Circle: The person who is disabled

Second Circle: Their parents, siblings, partners, closest friends (who are not disabled)

Third Circle: Relatives, friends, coworkers (who are not disabled)

The people in the Third Circle are most at risk for spreading misinformation, regardless of intention. It is noble, for example, to fight the good fight in the bathroom debate because you know someone trans whom you really like. But it doesn’t mean you won’t misinterpret their thoughts and feelings, or give in to temptation and reduce some of their story to gossip.

The people in the Second Circle, as Madonna proved, are also at risk for such blunders. And too many partners, close friends and immediate family members err by letting their darkest fears and most selfish impulses lead them to say or do something terrible to the person in the First Circle. But on the flipside, much of the best work in minority rights has been produced by partners and parents of frequently marginalized people. And the experiences of the caregiver and their place in society is another kind of knowledge altogether.

Returning to Dee’s approach, the goal should not be about personal relationships and expertise, but about the most effective way to open minds and halt the spread of misinformation. 

Meanwhile, the More-Enlightened-Than-Thou game should be restricted to the smallest of circles. This was perhaps best elucidated to me by my friend Bill. Shortly after having come out, he mused to me, “I’ve decided you’re more open-minded than I am.” 

“Why?” I asked.

“Because you have lots of friends who are gay.  I only have one friend who’s a dwarf.” He took a sip of his Coke and smiled out of the corner of his eye. “And I’m thinking of dropping her.”

 

 

Muttertag

8 May

Mother and Son(Image by Andy415 used under CC 2.0 via)
 

A very happy Mother’s Day to all the wonderful mothers I have had the pleasure of knowing, not least of all my own.

And to those of you who have lost your mothers,

And to those of you who have lost a child,

And to those of you who had to take care of your mothers (and yourselves) much earlier than the rest of us had to,

And to those of you who have tried hard to become mothers despite what neighbors (or politicians) may have said,

And to those of you who have tried hard to become mothers despite what nature ultimately decided,

And to those of you who are not mothers but have raised a child as well as any mother could,

In gratitude and with the deepest respect.

 

 

On Teaching Kids (and Ourselves) Not To Assume

24 Apr

Televisión escolar(Image by Antonio Jose Fernandez used under CC 2.0 via)

 

I was about to help a 5-year-old remove her tricycle helmet when we were cut off by a man staggering slowly down the street. Unnerved by his sudden presence and unusual gait, she stepped back and did a double-take. She stared at him and then turned to me. “He walks strange.”

I smiled but waited a few more beats until he seemed to be out of earshot. In the meantime, I wondered what to say to her. The adult/cynic in me was responsible for my gut feeling that he must be struggling with drugs or alcohol.

But then I considered how useful gut feelings really are in such situations. Annette Funicello complained of being accused of drunkenness when she was struggling with the early stages of multiple sclerosis. I have had enough questions about my sway back and achondroplastic gait to the point where I can only guess how many people aren’t bothering to ask me and simply making their own silent assumptions.

And while some have claimed gossip can be beneficial, it is so often responsible for misinformation and arrogance – the bedrock of ableism.

“He might be sick,” I said to her. “But we don’t know. He hasn’t told us. Sometimes when you’re sick your legs don’t work right. Do you remember when I had a brace on my leg last year?”

She nodded, and then peered once more down the street at him. “I think it’s ‘cuz he’s old! He has a gray beard and lots of old people have gray beards…”

 “Some do!  Like Santa Claus, right?”

 She nodded.

 “And my dad has a gray beard and lots of people call him Santa Claus!”

 She laughed.

 “But [my husband] has little gray whiskers, too, and he’s not really old yet, is he?”

 “No… ”

 “Does your daddy have little gray whiskers, too?”

 “One or two… ”

 “Yeah. Do they scratch when he gives you a kiss?”

 “Yup!”

Neither she nor I will ever be fully liberated from the temptation to silently classify many of the strangers we encounter throughout our lives. But the idea that we can remind ourselves that we ultimately cannot know for sure, and that such conversations need not be engulfed in tones of complacency or pity is an idea worth considering. 

 

 

And If Someone Thinks You’re Plus-Size, Then What?

10 Apr

Untitled(Image by Daniela Goulart used under CC license 2.0 via)

 

The tiff between comedienne Amy Schumer and Glamour magazine this week has reached the media coverage level of Big Deal. In an issue featuring plus-size models on its cover, Glamour listed Schumer under “Inspiring Women We Admire” alongside Melissa McCarthy and Adele. Schumer took to Twitter to complain:

I think there’s nothing wrong with being plus size. Beautiful healthy women. Plus size is considered size 16 in America. I go between a size 6 and an 8. @glamourmag put me in their plus size only issue without asking or letting me know and it doesn’t feel right to me. Young girls seeing my body type thinking that is plus size? What are your thoughts? Mine are not cool glamour not glamourous.

The Glamour editors apologized for hurt feelings, while emphasizing their respect for Schumer and that they didn’t actually mean to suggest she is plus-size.

The public has divided in two, with Schumer’s supporters claiming she has helped to question not only the definition but the very idea of “plus-size.” After all, as the children’s book You Are (Not) Small shows, size is relative. “Plus size” is, to be sure, an utterly made-up idea, necessary to absolutely no one on earth.

The other faction has criticized Schumer’s seemingly contradictory praise for plus-size models in the same breath that she insists she doesn’t belong with them. While I am not interested coming to any conclusions about Amy Schumer’s true personality and values, her actions thusfar represent an all too common problem in the body positive movement. The problem leaves women who larger than a size 6 or 8 to fend for themselves not only against the hideousness of lookism in general, but against the implication that their smaller sisters are all quietly consoling themselves with the mantra, “At least I don’t look like that!

Spend decades working to pick apart body image and lookism, and you’ve heard this all before. A woman—usually a woman—is an out and proud feminist, ready to rar about restrictive beauty standards while cracking jokes about her curves, but she cannot and will not stand anything less than compliments on her looks from others. In some cases, she goes fishing for compliments as much if not more than your average beauty pageant queen:

“I’m not short!”

“He called me ‘Ma’am!’ I’m not old!”

“The test rated me as obese. I’m not obese! Obese is…”

Instead of questioning what’s wrong with being old, she rages against the implication that she is. Instead of questioning what exactly would be so wrong with strangers not liking her looks, she argues that they would in a just world.

The reason so many of us end up doing this is because we like to be thought of as confident, yet we behave based on fear. We fear being called ugly, we fear not having broad appeal, and we do nothing to confront those fears. We talk openly about them. And stop there. And in doing so, we spread them.

We don’t face up to the fact that “winning” the beauty pageant game by having fashionable looks is no guarantee of lasting love or happiness. Instead, we keep on envying the winners and ever so quietly echoing the Mean Girls we met in high school: It is very important that most people think you are attractive. Beauty contests matter. Hierarchies matter, at least a little. No one wants to be last. You need someone to look down on in order to build yourself up. That’s natural. It’s a mess of a message to women and men, young and old alike. And it helps no one.

Sometimes it helps to switch from the high school mindset to an even less mature one. Spend a lot of time around pre-school children, and you know you can’t control what they notice:

“I think you’re pregnant!”

“Your skin’s all wrinkly!”

“Why are you so short?”

“Why do you walk so funny?”

“This hair is gray!”

“What’s that stripe on your arm?”

“What are those dots on your face?”

“Twenty-two is old!”

Pre-school teachers will fail—let alone make it through their first week— if they let such comments get to them. The best response, of course, is to engage the child and together examine the bodily feature they want to understand. If you don’t have the energy for a teaching moment, however, you simply shrug it off. Or say, “I am short/scarred/disabled because that’s just how my body looks. I like it that way.”

And if you want them to believe that—or anyone to believe that—then it helps if you believe it, too.

 

 

What Should You Do When a U.K. Night Club Offers Guests a “Free Midget” for Its Easter Special?

3 Apr

las_meninas_01

(“Las Meninas” by Diego Velásquez via)

 

There are undoubtedly those who find the idea of a night club offering its VIP-members a “free midget” for the evening hilarious. (It’s just so novel, ain’t it?) And there are certainly those who find the idea offensive. (“That was offensive,” comedienne Joanna Hausmann points out, is the third most-uttered phrase in America.)

And then there are those of us who know that the idea is not original. Far from it. It is at least 2,000 years old. Records show people with dwarfism were purchased as slaves in Ancient Rome and China up through the Renaissance. In bondage for their entertainment value, they were made to dance like monkeys and sometimes kept in cages.

From the Early Modern Era on into the 18th century—and, in some parts of the world, the late 20th century—they remained ubiquitous as lifelong servants and entertainers to aristocrats and dictators. Whether such servitude constituted slavery is difficult to ascertain. There is no evidence to suggest dwarfs were relegated by law to slave status at birth like other minorities were, perhaps because dwarf entertainers and servants were a frivolity for monarchs rather than a source of cheap labor for major industries. Records predating the 20th century reveal a handful of people with dwarfism lived independent lives. But, like the freak shows of the circus, servitude was often dwarfs’ best hope for sustenance in a world where families often abandoned them as children.

Dwarf advocacy organizations have condemned the Manchester night club’s offer as “discriminatory.” But rather than entangle ourselves in another battle between the that’s-so-offensive crowd and the hey-lighten-up crowd, I would prefer to ask both sides if they are aware of the history of servitude and enslavement. And if, as I suspect, most are not aware of it, it is necessary to consider why.

 

 

Art That Explores Dwarfism with Uniforms & Anti-Selfies

20 Mar

Laura Swanson(Image ©Laura Swanson, used with permission)
 
Laura Swanson is a rising artist on the New York scene. Born with achondroplasia, her work zeroes in on bodily difference and human perception. Her latest show, “Resistance,” opened recently at the JCC in Manhattan. The first part of the exhibit features uniforms and cultural apparel—that of a beekeeper, a welder, a plague doctor—altered to her size.

“I started thinking about if you see a person of average adult height wearing a uniform they wouldn’t judge or question…,” she told DNAinfo.  “[However,] when something is made smaller in scale, does it change the meaning?”

The second part of the exhibit features what Swanson calls “anti-selfies”: portraits in which her face is obscured. Does this draw attention to her extraordinary body? Or would the average viewer’s attention already be distracted by it?

In an interview at the Center for Art and Thought, she explained:

Anti-Self-Portraits examines longing for agency and privacy. I wanted to depict a naïve, comic desperation: that this person is so tired of being looked at, she is grabbing whatever is close to camouflage her body, but not doing a very good job at it, kind of like an ostrich sticking its head in the sand. At the same time, I wanted the photos to have a paradoxical feel. With the frontal, theatrical staging of the body, I wanted to convey that this person might not be such a desperate person, but actually a knowing person who is in control of how she is seen. 

A previous show, titled “Display,” featured an average-sized coat next to one that would fit the body of someone with achondroplasia. Here again Swanson invited her viewers to consider what exactly they were staring at. And why. Is an average-sized coat utilitarian, but a dwarf’s coat something you would pay to look at? Freak show attendees certainly did—and continue to do—throughout time and around the world.

Another planned project would explore notions of privacy. She described it in an interview at Haverford College in 2013:

My acute awareness of this desire stems not only from personal experience, but also from the history of photography, which is riddled with images of the Other…

I am working on a multi-part project that deals with an issue that is becoming increasingly unavoidable – the experience of having unwanted photographs taken of me and other people with physical differences while we go about our lives in public. It is funny because there is a lot of coverage and creative projects being made about government surveillance due to the recent PRISM/NSA spying controversy, but my project is actually looking at the ways ‘citizens’ use their phones to document others (ranging from people with physical differences and disabilities to depictions of homelessness) and share those photos on social media to amuse their friends. One part of the project will be … to design and fabricate devices for those who want to avoid having their image taken in public without consent. So not only am I getting further away from the camera, I am trying to prevent its usage!

As a professional photographer and sculptor, Swanson is thrusting tough questions upon the art world – a community renowned for having both broad and narrow definitions of beauty. As a person with dwarfism in the public eye, she is elevating the social issues of disability and physical difference to a more contemplative plane. That these issues tend to come in packaging that is either simplistically cute-and-cuddly or outright freak-show voyeuristic makes Swanson’s approach all the more refreshing.

 

 

How Much Should A Candidate’s Minority Status Matter?

21 Feb

White House(Image by Tom Lohdan used under CC 2.0 via)

 

With the presidential primaries well underway in the United States, voters are faced with the possibility of making history by choosing either the first female president, the first Jewish president, or the first Latino president. As in 2008, when Democrats were split between Clinton and Obama, the political sphere is deluged with arguments over how much minority status should and will influence the results.

As an American woman, I’ve been called upon by former secretary of state Madeleine Albright and feminist giant Gloria Steinem to join my sisters in solidarity for Clinton. It is intriguing to observe this living as a woman in Germany, where Angela Merkel has been chancellor for over 10 years. Her policies aside, I consider her greatest success as a female politician to be the way in which so little attention is afforded her lifestyle and femininity. Few people know what her husband looks like because he shies away from politics. That she has never had children of her own is rarely mentioned let alone a headline. And she has had to endure hardly any national discussions of her fashion sense. (Indeed, it took the media 18 years to notice that she’s worn the same dress at gala events for nearly two decades.) It seems crucial to appreciate such an absence of time-wasting sexism when considering the way in which Julia Gillard had to face down accusations of her partner being gay, the way in which Margaret Thatcher had to pose with pots and pans to prove her housewife credentials, and the way in which Hillary Clinton has had to field questions about her last name, her scrunchies, and her sex life.

So what will it mean if the next U.S. president is a woman, Jewish or Latino? Seeing a member of any long-oppressed minority rise to power can be very moving. Only the fiercest of cynics could not find it heartening to see the United States seriously consider a female president nearly 100 years after so many fought to crush women’s suffrage. The same goes for seeing Sanders’ brother Larry tear up when he wishes that their parents—Jewish immigrants who lost relatives in the Holocaust—were around to see Bernie get this far. “They would be so proud,” he smiles.

When Barack Obama was elected, I could not suppress the lump in my throat upon seeing Virginia and North Carolina—two states that had banned families like the one he came from—swing in his favor. It was exhilarating to consider anyone who had fought to block the Civil Rights Act or the Voting Rights Act now having to take orders from a black commander-in-chief.

Similar smiles were exchanged here in Germany in 2009 when the government was run by a female chancellor, a disabled finance minister, an Asian technology minister, and an openly gay foreign minister. Of the latter a friend grinned, “I like the idea of the heads of state in Saudi Arabia and Russia having to shake his hand.”

Representation can have deep repercussions on a subconscious level. The phrase “You can be anything you want to be!” so often secretly strikes traditionally oppressed minorities as absurd, silently countered with a sigh of I’ll believe it when I see it. Representation offers proof of possibility.

And yet, as Barack Obama’s presidency has shown, one single person’s ascent to the most powerful position in the land is no guarantee of equality for all. Black Americans shot by police continue to be twice as likely to be unarmed than white Americans shot by police. The Southern Povery Law Center reports the number of hate groups in 2015 had risen from the previous year. The 114th Congress is the most racially diverse in U.S. history, albeit men and whites remain over-represented. And of course racist backlash to the very idea of our first black president is all but a Google search away.

This is perhaps unsurprising when a closer look at Obama’s electoral victories show that in both 2008 and 2012, the majority of white men did not support him. Opposition to Obama is of course not always racially motivated, but the numbers do not show as many segregationist minds being changed as all the fanfare about a post-racial America seemed to indicate.

Similarly, the Bundestag under Angela Merkel’s current government remains two-thirds male. The U.K.’s parliament is roughly the same, nearly four decades after Thatcher broke the glass ceiling. Benjamin Disraeli’s legacy as the U.K.’s first Jewish prime minister did not prevent the country from turning away Jewish refugees fleeing Nazi Germany. There is thus little reason to conclude that simply electing a female, Jewish, or Latino president will signify a permanent absence of sexism or racism among the people.

But what could signify true and lasting change? Proportional representation has been shown to be a far better indicator of equal opportunity for all than the odd representation by a particularly powerful politician. Sweden has not yet elected a female head of government, but just under half of the representatives in the Riksdag are female. This percentage has been generally maintained for the past 10 years. It is the result of a continuous push from the Swedish women’s movement in the second half of the last century, which brought the proportion to 20% in 1972, 30% in 1990, and on up to the current near-parity. The U.S. Congress has the same proportion of female members now as the Riksdag did in 1972, ranking it 75th in the world.

This is why Steinem has been urging American women to help each other out in every election since the women’s movement, not just this one. Solidarity is certainly one of the best paths toward justice. But her eight-year history of accusing all of Clinton’s opponents of opposing the idea of a female president is unfair and as simplistic as sexism itself.

After all, voting for a candidate only for the sake of having a female head of government immediately supports not only the candidacies of Clinton and Merkel and Thatcher, but also of Sarah Palin and Marine Le Pen. Barack Obama and Ben Carson could not be more different, nor could Bernie Sanders and his former fellow senator Joe Lieberman. Policies should always—er—trump identity in the voting booth.

But while it is unreasonable to vote for a candidate only because he or she belongs to a certain minority, it is also unreasonable to vote against a candidate only because he or she belongs to a certain minority. This is why the discussions of identity and institutionalized xenophobia surrounding this election are as valid as they are necessary.

 

 

Can We Understand Race In Terms of Medicine?

14 Feb

Take off your fucking mask(Image by Taylor Dave used under CC license 2.0 via)
 
Leaving you this Valentine’s Day with the urging to go read an excellent discussion at NPR titled “Is It Time to Stop Using Race in Medical Research?

Then go read Alva Noë’s essay, “Can You Tell Your Ethnic Identity from Your DNA?” He writes:

…even if, in the ideal case, we find meaningful clusters of similarity in the space of genetic variation, there is no reason to think that these will map onto ethnicity or other categories in terms of which we understand our own identity. Identity, after all, varies non-continuously. French and German villages may be separated by the smallest of geographic distances. Genetic variation, on the contrary, so far as we now know, varies continuously. DNA is just not going to carve up groups at their culturally significant “ethnic” joints.

This interests me personally because any sort of categorizing of humans ends up being far more complicated than our everyday discourse would have us believe. Race, gender, and disability are so often thought to be concretely definable through bodily indicators, yet our categories for these identities—black/white/Asian, male/female, healthy/disabled—often fail fantastically to represent a good portion of humanity. As I’ve shown before, dwarfism itself is a social construct. All identities are to some extent.

 

 

Should Jokes About Minorities Be Off Limits?

7 Feb

 
Ofcom, the communications regulator of the United Kingdom, has concluded that comedian Jimmy Carr was in breach of the code of conduct when he cracked the following joke on The One Show last November: “I tried to write the shortest joke possible, so I wrote a two-word joke which was ‘dwarf shortage.’ ” He then looked squarely into the camera and said, “And if you’re a dwarf and you’re offended by that, grow up.”

The scandal at face-value seems odd. Carr’s joke is fantastically boring to those of us with dwarfism. (A joke is indisputably boring if it’s easy to prove that anyone who might attract such a comment and who has graduated primary school has heard it a kajillion times before.) But not only is it far from the most distasteful thing Carr has ever said—his cracks about pedophilia come to mind—but it is far from the cruelest dwarf joke he’s ever made.

In 2009, in an episode of the BBC quiz comedy show QI, host Stephen Fry rattled off a list of 19th-century circus freaks on Coney Island. Trying to suppress a giggle, he said, “There was Bonita—I don’t know why this is funny—the Irish fat midget.”  

The audience exploded with laughter.

Carr immediately looked at Fry agape. “You don’t know why that’s funny?”

I share a love for QI with my partner so fierce that we had once joked about using the theme song for our wedding procession. I also am not skinny,  belong to a family named Sullivan, and have achondroplastic dwarfism, so it’s hard for me to imagine any sort of joke that I could take more personally without it being addressed to me specifically. What better way to be reminded that so many adults would secretly side with the playground bullies if they could than seeing the audience and creators of your favorite show crack up over your very existence?

QI was never reprimanded for it by Ofcom, however, because it is on much later in the evening in the U.K. than The One Show and does not require its guests to sign a form agreeing to comply with family-friendly standards of comportment. Ofcom reports that the BBC responded to its complaint about Carr on The One Show thusly:

The BBC said that “any humour alluding to disability has the potential to offend and, although the BBC received very few complaints on the issue, the One Show’s Editor… sincerely regrets any offence that has been caused by it”. The BBC recognised the “need for sensitivity and careful consideration in respect of the inclusion of material of this nature”. It added that “The One Show is heavily involved with the Rickshaw Challenge initiative that raises money for Children in Need, and in that capacity has worked closely with young people with disabilities including achondroplastic dwarfism. The production team is very well aware of, and sympathetic to, the sensitivities of those affected by disability to humour that alludes to it.”

The problem with imposing standards for offensiveness in humor is that we have all had our jaws drop in disgust, and we have all urged a disgusted person to lighten up. This is why the most current theory about humor is founded on the concept of benign violation. A joke makes you laugh when it strikes the perfect balance between fun and shock. It fails when it comes off as too soft or too harsh.

QI was reprimanded in 2011 for quips about a Japanese man who survived both the Hiroshima and Nagasaki atomic bombings. The show had until then featured many jokes about World War II, but none involving the crimes against humanity, or any specific victim of the war.

In 2013, the satire magazine The Onion for the first time in its history fired a staff member and issued a public apology for referring to 9-year-old Quvenzhené Wallis as “a c**t.” Critics pointed out that sex jokes can be funny, jokes about kids being annoying can be funny, but sex jokes about a specific child referred to by name are indefensible.  

Similarly, Ofcom argues that Carr’s second line (“And if you’re offended by that, grow up!”) is what placed him in breach of the code of conduct. They found unacceptable his “apparent suggestion that those with dwarfism would not be justified if they felt personally offended by his attempt to derive humour from their condition.”

It seems easy to argue why I hope for a day when non-dwarfs no longer double over at the mere mention of my existence, just as they no longer double over at the mere mention of other minorities. Yet it is enormously difficult to argue what to do to ensure that day will come. I began this blog by documenting all the different sorts of media—both the high-brow and the dreadful—that took cheap shots at dwarfs. In the four years since, I’ve never been at a loss for material.

For now I feel we should keep the rules simple. I propose a telecommunications ban on jokes about people with dwarfism except by people with dwarfism. If the public so desperately needs puns about height and size, then give Peter Dinklage and Warwick Davis and Leonard Sawisch and Meredith Eaton more screen time. And if Jimmy Carr thinks that’s unfair, he should grow up.

I know about a limb-lengthening procedure that could help him out.

 

 

Everyone’s Sexuality. Everyone’s.

31 Jan

(Via)

From the Archives
 

Don’t read the comments. Don’t read the comments. Don’t read the comments.

That’s what raced through my mind as I read “The Challenges of Having Sex As A Little Person” at The Atlantic. Of course I read the comments anyway.

And I was only slightly startled to find nothing but solipsistic snickering and overdone puns. The Atlantic doesn’t win any points for ending the article on a pun, either. But praise is due for addressing the topic at all. Based on an extensive interview with Dr. Marylou Naccarato, who has Kniest dysplasia, the article takes a wonderfully sex-positive approach to the experiences of people with dwarfism and the physical obstacles they can face in bed.

As per nearly every feature on dwarfism in the mainstream media, there are some factual errors. For example, one dwarf couple is quoted claiming that people with achondroplasia require “no medication, surgeries, special needs, nothing.” (See here for a list of the many complications we are at risk for.) But Naccarato is doing great work that is revolutionary in light of the fact that Little People of America, and probably most disability advocate organizations, repeatedly shy away from the topic of sexuality.

A simple reason for their silence is that almost all disability organizations comprise just as many parents and relatives of disabled people as disabled people themselves. And who wants to debate the best way to masturbate with mom or dad sitting next you? A more sinister reason for the silence is one of the building blocks of modern prejudice against disabled people: that is, the presumption that they are innocent, and therefore asexual. Most positive portrayals of disabled people are cute and cuddly. Is it the only way society can accept us? Refusing to see a minority as anything but asexual is to deny them their full humanity, on par with slut-shaming, prude-shaming, queer bullying, and objectification.

Before I go any further, let me say this: I do not want to talk publicly about what I do in the bedroom and I do not want to know what you do in the bedroom. My firm belief in sex-positive feminism and equality does not mean I think that you are sexy or exciting or impressive. Unless we’re close confidantes or I’ve indicated otherwise, please assume I don’t want any mental images of you and your naughty bits, no matter what they look like.

That said, I fully support anyone’s right to desire any sort of consensual sex imaginable. Without double-standards. Without the pressure of competition. Without the nuisance of others turning their personal preferences into rigid rules.

Take, for example, the way virginity is so frequently turned into not just a game but a high-stakes tournament. When and how did you lose it is an idea all of us are expected to base much of our identity on, even as adults. This is despite the fact that, according to medicine, virginity doesn’t exist. After all, what kind of sex does a guy have to engage in to officially “lose” it? And what about girls born without hymens? When exactly do lesbians lose their virginity?

Like race, virginity is a social construct and, in the words of a very wise person on Tumblr, what can be socially constructed can be socially changed. Last year the great Tracy Clark-Flory interviewed acquaintances about the sexual experience they considered to be their “first time.” The glorious thing about her inclusive project was that it revealed human sexuality to be just as diverse as everything else about us. Some defined their first time by their first orgasm, others by a particular first touch or experience of being touched. The problem with her stretching the definition of “losing your virginity” so broadly is that it robs competitive, insecure people of their ability to set standards with which they can gloat and put others down. Wait, no. That’s another glorious thing about it. There really is no problem with recognizing everyone’s experience as equally valid.

Failing to include everyone not only causes unnecessary humiliation, but it causes us to miss out on opportunities for true enlightenment. To quote the authors of You Can Tell Just By Looking: “Sexual minorities—people whose sexual desires, identities, and practices differ from the norm—do a better job talking about sex, precisely because they are constantly asked to explain and justify their love and their lust to a wider culture and, even, to themselves.” The more you examine harmful traditions, the less necessary they become.

This does not mean that minorities have better sex. Indeed, too many activists in the sexual revolution end up repulsing readers and listeners when they allow pride in their sexuality to devolve into arrogance, insisting their sex life is better than yours, rather than merely different. For a year, the BDSM club at my alma mater ran the slogan: “I do what you’re scared to fantasize about.” Not helpful. And kinda pathetic the more you think about it.

I will never judge someone for liking any particular kind of consensual sex, but I will judge anyone who tries to turn sex into a competition to calm their own self-doubts. Whether you’re a wise-cracking online commenter or a sex-positive pioneer, true sexual liberation is about moving beyond the middle school clique mentality, not indulging in it. It’s pretty much the least attractive thing there is.

 

 

Sometimes Beauty Is Easily Recognizable

24 Jan

Fashion Shoes...(Image by Thomas Leuthard used under CC license via)

 

Sometimes beauty is easily recognizable. Sometimes it’s not. Sometimes fashion is a statement. Sometimes it’s not. Sometimes street photography is a burden for those whose bodies are more likely to be photographed than others’.

Feel free to share your ideas about this, in or outside of the context of the above photograph by Thomas Leuthard.

 

 

 

 

Can We Understand What It Is Like To Hear Sound for the First Time?

17 Jan

listen(Image by Jay Morrison used under CC license via)
 
In the 1990s, Cristina Hartmann was one of the first of a few hundred deaf and hearing impaired children in the United States to undergo surgery for a cochlear implant. She has written extensively about the experience of hearing sound for the first time after the implant in her right ear was activated, most recently this month on Quora.com:

My mother was the one who told me, “Raise your hand when you hear something.” That statement left me baffled. What was I looking for? It was a bit like searching for Waldo when you didn’t know what he looked like.

In that tiny, windowless room deep in the large Manhattan hospital, the audiologist began tapping away at her keyboard. Everyone stared at me, even a woman standing in the doorway whom I had never seen before. I felt the heavy weight of expectations on my shoulders. I had to do something. I concentrated very hard, searching for the mysterious, indefinite Waldo. Whenever I felt anything, an itch or a breeze, I raised my hand slowly, searching everyone’s expressions for whether I had gotten it right or wrong. Nobody gave me any confirmation, so I went on guessing. Twenty-five years later, I realize the whole thing was a show that I performed. I knew this was a momentous event, and I didn’t want to disappoint….

As a congenitally deaf child (who was a bit long in the tooth at 6), I had never formed the neural pathways for my brain to even begin processing auditory stimulation. In the fashion of the ostrich, my brain ignored the strange stuff, and I remained as deaf as I had been an hour prior…

It took months and plenty of therapy for her brain to adapt. Thirteen years later, the activation of a second implant, this time in her left ear, proved a more harrowing experience than the first:

As the audiologist began the beep sequence, I burst into tears and involuntarily clenched the left side of my face. She looked up, puzzled. “Why are you crying? You’ve had this before!” she said. The pain was like sparklers going off on the left side of my head. The stimulation, as little as it was, completely overwhelmed me.

Even though I had already laid the neural pathways for auditory stimuli for my right ear, my brain was unprepared for the stimuli coming from the left side. Since my brain had already experienced this type of stimuli, it could process it, but it was still sensory overload. That stuff hurts. It took me months to acclimate myself to the new implant, but in the meantime, I cringed every time I turned it on. As I said, laying new neural pathways takes work.

Hartmann was later told by the mother of another patient, “Once they started with the beeps, [my daughter] screamed and cried.”

Such narratives exist in stark contrast to the YouTube videos of newly activated implant users laughing and smiling—and, in one case, crying for joy—that have been bouncing around the Internet with far greater frequency. While both narratives provide important information for those considering cochlear implants for themselves or their children, they are also an important contribution for the greater public in our understanding of what it means to be deaf.

It makes sense that crossing out of the world of silence into the world of sound is just as disorienting as its opposite. A hearing person with a middle ear infection strains to perceive the sound of speech, and a deaf person with a new cochlear implant strains to tune out noise pollution: the knocks of a radiator in another room, car doors slamming on the street, wind, footsteps, not to mention the countless background beeps and clicks of the Digital Age. After all, when a baby leaves the womb, she does not instantly adapt to her new home. She comes out crying. There’s too much light and not enough warmth. And, if she is not deaf, there is too much sound.

Speech is no less difficult to learn than Sign language, just as English is no less difficult than Chinese. The ease with which we learn one form of communication or the other depends entirely upon our personal experience and place in the world. For those of us who have grown up hearing speech, the viral videos communicate something very different than for those who grew up in Deaf culture.

While the experiences of utter delight portrayed in the videos are valid, their popularity contributes to an oversimplification of the issue. Watching a toddler smile upon finally hearing his mother’s voice for the first time sends a very strong subliminal message: Being deaf must be worse than not being deaf, and therefore anyone would want to join the world of the hearing. But the general public as an audience is already biased toward the hearing world’s standards of happiness. We are moved by the sound of loved ones uttering our names but not at the image of them signing our names because our culture does not rely on—and therefore does not highly value—Sign language.

This what inspired Lalit Marcus, the daughter of deaf parents and an active promoter of Deaf culture, to pen an article for The Wire titled, “Why You Shouldn’t Share Those Emotional ‘Deaf Person Hears for the First Time’ Videos”:

I want to make it clear that I don’t have a problem with people who choose to get cochlear implants. Medical decisions are painfully personal… I’m all for people making the health choices they think are best for them. What bothers me are the maudlin videos produced out of someone’s intense, private moment that are then taken out of context and broadcast around the world. What bothers me is how the viewer never learns how the individual came to the decision about their implant, which factors they took into account, whether their medical insurance covered it. Sometimes we don’t even learn their names.

This gives me pause. I consider the clip of me removing my casts to look at my newly lengthened legs, which featured 15 years ago in the HBO documentary Dwarfs: Not A Fairy Tale and last year on Berlin’s public station. The moment was simply joyous—as was the moment I stood up, let go of my friend’s hands and took my first steps—but the story behind it was abundantly complex. Which hopefully both documentaries portray.

I have endeavored to communicate that through this blog and all the media work I have done for the past 20 years.

Limb-lengthening and cochlear implant procedures are markedly different in several ways. Limb-lengthening, for example, does not threaten to endanger another language. But it does threaten to break ranks in the dwarf community through the controversy of altering versus accepting extraordinary bodies. Both procedures have proven to evoke vitriol among their proponents and detractors.

Hartmann reveals:

Most of my deaf friends were good about my CI. They didn’t mind it, except for the fact that my speech therapy cut into play time. That being said, people in the Deaf community felt free to make pointed and derisive comments about my CI. I still get these comments, even almost 24 years after my surgery. To some, I’ll always be a CI-wearer and a turncoat.

The CI advocates aren’t any better, if not worse.

I have very pleasant relationships with many parents of implanted children and CI users. I, however, have also been called a failure because I still use [American Sign Language] and don’t speak perfectly. I’ve also seen a mother run across a room to prevent her child from signing to another deaf child. I’ve been scolded for making gestures and looking too “deaf.”

The debate, of course, is ongoing.

But for those of us not faced with opting for or against a cochlear implant, we are faced with the challenge of overcoming our bias and remembering that Deaf culture is no less valid than the hearing culture we inhabit. Especially when those admittedly tantalizing videos wind up in our Facebook feeds.