What Makes A Story “Depressing”?

24 May

I recently read Good Kings Bad Kings by Susan Nussbaum, winner of the PEN Bellwether Prize for Socially Engaged Fiction and several other accolades. When describing it to friends as a story told from the perspectives of patients and staff at an institution for severely disabled minors, I got a common response: “Well, that sounds like a fun read!”

I will perhaps never fully grasp what distinguishes a depressing story that brings you down from a great drama that hooks you from the start. The bestselling books in the English language are about a boy who must face down his parents’ killer, a girl who spends hours in her lover’s Red Room of Pain, and a high schooler who can’t wait to have a monster baby with an emotionally disturbed vampire. Crime shows and novels continue to be wildly popular through the generations. If you turned on the closed captioning for most of the top-grossing films of the last 30 years, you would be reading, “[scary music],” every few minutes.

Why do we embrace all this while believing that a book that starts off with the rants of a teen in a wheelchair might be too heavy to handle?

Of course, realistic portrayals of suffering pack a far more visceral punch than contrived ones. Pirates of the Caribbean and Star Wars will widely be perceived as less distressing than The Piano and Love Is Strange because, despite their carnage, the adventure stories never get inside their victims’ heads. Touchy-feely tales embraced by mass audiences tend to have happy endings, or at least the satisfying downfall of an easily identifiable villain. This is why, as Salon’s book critic Laura Miller has pointed out, a story is schlocky and sentimental insofar as it lies to the audience.

And Good Kings Bad Kings does not lie to its audience. I embarrassingly ended up having to conceal tears streaming down my cheeks while sitting on a bus as I read about one particularly beguiling character who (SPOILER ALERT) dies after getting third-degree burns in the shower due to human error and then catching pneumonia after surgery. I can attest that such a tragic scene is representative of reality, not sheer melodrama. I lived in a pediatric hospital for five months when I was a pre-teen, and the next year I learned that one of my friends had died after his breathing apparatus failed due to human error, and another one had died from catching pneumonia after surgery.

Living at that hospital was far from easy. As I’ve written before, listening to others share their realities in group therapy was one of the most humbling experiences I’ve ever had. But while the human fear of death and suffering is rational and something I never lost, living alongside the patients did knock down many of my fears of illness and disability that were irrational.

Within a few weeks on the ward, I was no longer disconcerted at the sight of head injuries, tracheostomy tubes, stumps, or burned faces. At first I stared. Many of the owners stared back at me and my Ilizarov fixators. We all stared at anyone with a condition we hadn’t seen before. And sometimes we stared at each other’s wheelchairs out of envy. But the constant exposure soon rendered such features as mundane to us as glasses, braces, and freckles. We were used to it. What is the harm in allowing the rest of the world to get used to it, both through inclusion in society and representation in books and film?

As a study published in Science found, reading literary fiction makes you more emotionally intelligent. As The New York Times reported, “This was true even though, when asked, subjects said they did not enjoy literary fiction as much. Literary fiction readers also scored better than nonfiction readers — and popular fiction readers made as many mistakes as people who read nothing.” The results are unsurprising when literary fiction distinguishes itself from popular fiction by avoiding formulas and stereotypes. We’ve already seen that avoiding stereotypes fosters more creative, innovative thinking. Now it makes us better at understanding each other, too.

Indeed, literature provides characters who are realistic because they are just as complex as we all are. Realistic characters don’t make us the readers like them. They make us understand them, while simultaneously being a little bothered by them because we recognize their faults and selfish impulses in ourselves. In other words, a great literary feat doesn’t show you good people triumphing over the bad. It shows you how and why we hurt each other.

The harm in Good Kings Bad Kings is not wrought by cackling villains upon innocent angels. It comes from the fear, anger, and selfishness easily recognizable in everyday life. And it is visited upon disabled people who are not dying to escape their diagnoses but who are sick of the condition our society has left them in. As Susan Nussbaum writes in her afterword:

I used to wonder where all the writers who have used disabled characters so liberally in their work were doing their research. When I became a wheelchair-user in the late seventies, all I knew about being disabled I learned from reading books and watching movies, and that scared the shit out of me. Tiny Tim was long-suffering and angelic and was cured in the end. Quasimodo was a monster who loved in vain and was killed in the end, but it was for the best. Lenny [in Of Mice and Men] was a child who killed anything soft, and George had to shoot him. It was a mercy killing. Ahab [in Moby Dick] was a bitter amputee and didn’t care how many died in his mad pursuit to avenge himself on a whale. Laura Wingfield [in The Glass Menagerie] had a limp, so no man would ever love her…

None of the characters I write about are particularly courageous or angelic or suicidal, bitter for their fate, ashamed to be alive, apt to kill anyone because they have an intellectual or psychiatric disability, or dreaming of being cured or even vaguely concerned with being cured.

And that’s what makes realistic portrayals of disabled people so significant. Not for the sake of inspiration porn. Not to make us proud of how good we have it. But to welcome disabled people’s lives, stories, and perspectives into the arts and therein mainstream society.

The assumption that a story about severely disabled characters must be overwhelmingly upsetting is precisely the mentality that marginalizes severely disabled people. If we won’t read their stories because they’re too sad, we’re not very likely to know how to approach them in real life.

And for all its lines about the importance of realistic stories for the sake of galvanizing greater empathy, The New York Times never reviewed Nussbaum’s award-winning book.

 

 

Ireland Votes on Marriage Equality – While Snarking about Midgets

17 May

 

Ireland votes on same-sex marriage on Friday, and comedians Brian O’Carroll and Lenny Abrahamson from the sitcom Mrs. Brown’s Boys have teamed up to urge voters to support equality with the above video. If you can’t view it, here’s a summary:

***

Reading from a speech, a frumpy-looking senior citizen, Mrs. Brown [played by Brian O’Carroll], looks at the camera and says, “Hello. I’d like to talk to you today about midget equality.”

“Marriage, Mammy!” interrupts her son Rory, who is standing next to the cameraman.

“What, love?” she asks, confused.

“It says ‘marriage equality,’ ” he corrects.

“What you got against midgets?” she demands.

“Nothing, Mammy, I’ve got nothing against anybody! It’s just that this is about marriage equality.”

“What about it?” she shrugs. “Any two people who feel in love enough should be allowed to get married! What’s the feckin’ fuss?”

“Well, some people believe that if you allow gays and lesbians to get married, it might change the meaning of marriage and family,” he explains.

She laughs. “I’ve heard that one before! When I was a young girl, there was a big hoo-haa about mixed marriages – y’know, Catholics marrying Protestants and black people marrying white people. But you know what? They still went ahead and got married. And the world didn’t end. No. And we all grew up a little bit.”

She turns to the camera. “And you know, we all have to grow up a little bit now. Marriage isn’t easy. Changing the law isn’t easy. Changing attitudes is even harder. But we can do it. We’ve done it before. And the world didn’t end.”

“Oh, I know that some of you think it’s not right. Well, all I can tell you from my experience is that I can’t describe the joy I feel to see my son Rory having the same opportunity for happiness as everybody’s else’s son.”

“So go out and vote. That’s the important thing. Go out and vote.” She turns to Rory. “Do you know, Rory, there was a time when women weren’t allowed to vote?”

He smiles, rolls his eyes and nods knowingly.

They both start to laugh.

“You see, that’s the thing!” she says, looking at the camera again. “Every generation gets a chance to make a big change. And you’re going to get your chance on May the 22nd. So go out and do it. Go out and vote.” She giggles. “And keep in mind, support midgets!”

Rory rolls his eyes and shakes his head.

She thinks for a mind. “Oh, right. They asked me to make it funny.” She prepares to tell a joke. “These two queers were—” ”

“Mammy!” Rory scolds.

***

The video is touching in its call for equal rights for same-sex partners in the spirit of equality for so many minorities. And yet the attempt to inject some humor amid the pathos comes via a slur at the expense of another minority. After I showed the video to a close friend, his face shifted back and forth between a soft smile and a furrowed brow. “Most of it is pretty sweet, but – the midgets part? I mean, why was that necessary?”

As the mother of a boy with achondroplasia told The Irish Independent:

I know Brendan O’Carroll probably didn’t mean anything malicious in his use of the word, but it’s just to educate people that it’s not an acceptable term to use…

Brendan didn’t use the N-word to describe black people, as this is thankfully totally unacceptable in most of today’s society…

I didn’t see what people with short stature, call them ‘midgets’ as he called them, has got to do with marriage equality. I just saw it as a source of ridicule. It was a cheap shot. It was just a gag…

[When my son was born], the obstetrician tried to explain the condition to me by using the term, “Do you know a clown in a circus? He’d be one of those.” That’s the attitude that’s out there. It’s just comments that people think it’s okay to refer to these people in a derogatory fashion and it’s not okay.

She is hardly the first mother of a child with dwarfism to hear this. Parents of children with achondroplasia born in the 1950s recounted in the documentary Little People: The Movie how they were routinely told the same thing by obstetric nurses.

I personally do not find Carroll’s use of the word “midget” deeply offensive. I find it cheap, and unfortunately symbolic of the way dwarfs are predominantly marginalized by comedians and pop culture – the same way gays and lesbians up until only recently were predominantly marginalized by comedians and pop culture. As Bob Hope wise-cracked in 1970:

You know, a new movement – a new movement has appeared on the American scene. First women’s liberation demanded the rights of women. Then the hardhats demanded the rights of men. And now gay liberation is demanding the rights of – whatever they are.

Many in the dwarf community have tried to emphasize the offensiveness of the word “midget” by comparing it to the offensiveness of the N-word for the black community. This comparison is not entirely apt because a word’s power to offend relies greatly on the intentions of those who primarily use it. Most of the time that I hear the M-word, the utterer is displaying more blunt ignorance than outright malice. In that way, “midget” is perhaps more comparable to “Oriental” or “gypsy” or “Siamese twin.” Some people use these words pejoratively, many people take them as pejoratives, but most people use them because they are unaware of the human rights conversations about these groups that have been going on for the past several decades.

Indeed, my first reaction was that, obviously Mrs. Brown is played up as a caricature of batty, outspoken matriarchs whose speech is expected to be embarrassingly outdated. But she did not refer to black people as “coloreds.”  And surely, Mrs. Brown, you had Seinfeld in Ireland back in the day?

 

 

 

The Rules For A Photo Shoot

10 May

Photo Shoot ©Ines Barwig(Image ©Ines Barwig)

 

“Sometimes you get a flash of what you look like to other people.”

― Zadie Smith, On Beauty

 

One of my responsibilities at my day job is to coordinate photo shoots for employee portraits. I’ve done this three times now, and it always requires warmly coaxing reluctant coworkers into saying yes, and chatting with them while the flashbulbs fire off in their face. Because, as the photographer told me the first time, “I need someone there to hold their hand. To keep them calm and smiling. Otherwise, a bunch of them will get all self-conscious and fussy. Sometimes it really feels like taking kids to the dentist.”

Indeed, even getting them to show up can be a challenge. A fair number of people flat-out refuse; most but not all of them women, who cut me off mid-sentence and insist, “No photos! I hate being photographed.”

Last week, just after I’d heard this for the umpteenth time, my cell phone rang. It was a reporter who is doing a television piece about Painting On Scars.

“Emily, my team and I just came up with a new idea for our story. We’d like to film you having your picture taken in a photo shoot to show how self-confident you are in front of a camera!”

I couldn’t hold back my laughter.

And then I thought, what is self-confidence in front of a camera?

My experience watching others has shown me that there are unspoken, commonly held beliefs that dictate so much behavior during photo shoots.

For one thing, we tend to believe that selfies are empowering, but that it’s embarrassing to be photographed by someone else. Which goes to show that it’s not about being photographed but relinquishing control over the photograph. Most of us have an idealized view of ourselves that includes seeing our own faces at a particular angle, but we hate it if someone captures us from an angle that deviates too much from our ideal. (This has been proven by clinical trials.)

We tend to prefer smiling photos of others but closed-mouth photos of ourselves. Showing teeth often strikes us as warm and welcoming on someone else, but the fear of looking too uninhibited results in many of us appearing overly serious in our portraits.

We tend to loudly list every physical feature we don’t like about ourselves, believing it signifies modesty. Even though it often comes off as fishing for compliments.

So we tend to reject direct compliments, again believing it to be a sign of modesty. Even though John Cleese famously told Stephen Fry:

“You genuinely think you’re being polite and modest, don’t you?”

“Well, you know …”

“Don’t you see that when someone hears their compliments contradicted they naturally assume that you must think them a fool? Suppose you went up to a pianist after a recital and told him how much you had enjoyed his performance and he replied, ‘Rubbish, I was awful!’ You would go away thinking you were a poor judge of musicianship and that he thought you an idiot.”

“Yes, but I can’t agree with someone if they praise me, that would sound so cocky. And anyway, suppose I do think I was awful?” (Which most of the time performers do think of themselves, of course.)

“It’s so simple. You just say thank you. You just thank them. How hard is that?”

You must think me the completest kind of arse to have needed to be told how to take a compliment, but it was an important lesson that I (clearly) never forgot. So bound up with not wanting to look smug and pleased with ourselves are we that we forget how mortifying it is to have compliments thrown back in one’s face.

Indeed, the photographers I’ve worked with remember subjects in terms of their agreeableness versus their fussiness. I bore this in mind as I prepared for my own photo shoot.

How much preparation was required? Recovering from surgery and combating unanticipated complications, I wasn’t feeling that I looked my best. I won’t reveal what about my looks were particularly displeasing to me because there is no right way to hate your body. Many in the Body Image movement have argued that it’s fair, not rude, to voice our insecurities. In fact, isn’t it good to let others know that they are not alone in their struggle for self-acceptance? But these insecurities do not exist in a vacuum. They exist in a hierarchy, and this hierarchy dictates that if I’m ashamed of gray hair, someone with more gray hair should be more ashamed. If I’m upset about having noticeable scars, someone with more noticeable scars should be more upset. And so on. Body-bashing upholds the hierarchy

And ignoring the effects one’s own body-bashing has on others is, no matter how you look at it, self-involved.

So instead of spending time and energy on whatever might disrupt my ideal self-image, I thought about what makes a photo shoot enjoyable.

A kind, charismatic photographer.

People who make you laugh.

Someone who truly loves you saying something particularly nice about their favorite photo.

Hearing from the photographer, “Thanks for being so easy-going! That was really fun.”

For two years, a friend would never let me or anyone take his picture. It was on very rare occasions—group photos, flirty hugs with a close friend—that he wouldn’t turn away or cover his face. Whatever hang-ups he had about physical imperfection, he carried himself in a manner that attracted both sexes from miles around. He visited me in college once and we noticed four of my fellow students check him out during his first hour on campus.

On another visit, I snapped his picture and declared, “Hey, you didn’t cover your face this time!”

“Yeah, I’ve stopped doing that.”

“Why?”

“ ’Cuz I found it’s really annoying when other people do that when I want to take their picture.”

I smiled. “Ya think?

 

 

Baltimore Is Everyone’s Problem

3 May

Mural, Baltimore(Image by Eli Pousson used under CC license via)

 

I could write about the year I spent in downtown Baltimore, when I rode past the above mural every day, when the neighborhood I lived in was serving as the inspiration for the crime show Homicide: Life on the Street. But this is not the time for white people to talk about themselves.

This is the time to consider the undeniable disparities between white people and black people living in Baltimore, and elsewhere in the U.S. This is the time to acknowledge the privileges and freedoms black Americans still cannot enjoy today. And this is the time to listen to what we are being asked to do by those who have good reason to be upset about all this.

If we spend most of our time telling poor and disenfranchised people how they should behave rather than examine what we regularly take for granted, then we’re not interested in fixing the problem. We’re just interested in congratulating ourselves for being better than others.

 

 

Is It Wrong to Give Your Kid an Extraordinary Name?

26 Apr

Hello My Name Is... (Image by Alan O’Rourke of workcompass.com used under CC license via)

 

Every coupled friend I have here in Germany is, as of this year, a parent. And looking upon the names bestowed upon the new generation, I must say I like them all. Or at least, I don’t hate any of them. This is impressive when considering that, if my partner and I ever want to get into a fight, we simply start discussing names we would hypothetically pick for a child. Just give us five minutes and soon we’ll be shouting, “Bo-ring!” “Flaky!” “Hideous!”

And then we run up against the unanswerable question: Is it harder to have a mundane (a.k.a. boring) name or an unusual (a.k.a. weird) name?

While I enjoy the sound of my own name—as many if not most people do—I haven’t enjoyed seeing Emily end up in the top ten of the most popular U.S. baby names for the past three decades. Emily was the first name a sociologist in Freakonomics came up with when asked to list “typical white girl names” in the U.S. One hot summer in Upstate New York, I worked in a room with five other Emilys, all my age. One friend had so many Emilys in his life that he added permanent descriptors to differentiate us. (I was “Home Emily.”) Matt Groening was definitely on to something when he listed meeting-another-kid-with-your-name as one of childhood’s greatest traumas.

This is why I see the appeal of extraordinary names. After all, the whole point of giving a child their own name—as opposed to, say, calling them Person or Daughter No. 1—is to distinguish them from others. To have them, and not four other people, look up when you call them. In my years as a school teacher, I had a much easier time remembering Xenia, Letitia and Suma than Tom, Jim and Kate. I’m also grateful to parents who opt to avoid the sound-combinations that happen to be trending, reducing the likelihood of my having to remember which student is Julie and which is Julia, or whether the boy in front of me is Leon, Leo, or Leonard. I regularly confuse Kristen Stewart and Kristin Scott Thomas, but I’ll never forget Quvenzhané Wallis till the day I die.

Black Americans are renowned for frequently giving their children names that sound vaguely African with modern flourishes, from Baratunde and Beyoncé to Kwame and Malia. I spent a good deal of my childhood on Long Island and in Baltimore where I had classmates and friends named Chiwanna, LaTaesha, Zeeyaré, and Teyonté. South African comedian Trevor Noah has poked fun at how very not African such names sound where he comes from, but the attempt to reconstruct cultural ties, however inaccurate, is perhaps most understandable in the context of those whose ancestors were violently removed from their culture:

 

 

Looking down on extraordinary names can have xenophobic undertones. After all, the pre-1960s model of blending into middle class America resulted in immigrants named Wei-Li and Helmut swiftly transforming into Winnie and Herbert. An insistence that it’s cruel to name your child something unusual suggests something wrong with diversity or being a minority.

“That kid is gonna get teased so bad!” is the usual response to an extraordinary name. But wouldn’t it be better to teach your child how to react to schoolyard teasing with self-confidence and empowerment rather than avoid anything that might make them remarkable? Studies show the Boy Named Sue Effect is real. That is, my friends Lucrezia, Baldur and Bronwyn are more likely to have strong and sturdy personalities than my friends Matt, Matt and Matt.

As one psychologist explained in The New York Times:

Researchers have studied men with cross-gender names like Leslie. They haven’t found anything negative — no psychological or social problems — or any correlations with either masculinity or effeminacy. But they have found one major positive factor: a better sense of self-control. It’s not that you fight more, but that you learn how to let stuff roll off your back.

Then again, some endeavors to be different do seem less defensible than others. As noted before, a study in 2010 showed that teachers here in Germany are more likely to give lower grades and presume unruly behavior of kids named Cindy, Mandy or Kevin because they are assumed to come from anti-intellectual, anti-social homes. These names are common among children born in the Eighties and Nineties in the former East Germany where Hollywood had a strong influence, Kevin having boomed right after the international success of Home Alone. Smashing stereotypes about the people from behind the Iron Curtain is admirable, but destigmatizing Macauley Culkin feels less necessary.

And what about the potential for sounding pretentious? German punk singer Nina Hagen named her daughter Cosma Shiva after having allegedly seen a UFO while pregnant. The most compelling argument against picking a name from a distant culture I’ve heard comes from a fellow Long Islander with an Indian first name and a Jewish surname given by her Jewish dad and mother whose parents hail from Chennai:

I don’t think it’s offensive when a white couple reaches around the world for a name. I think it’s tacky. If you want to name your kid something foreign and exotic, then get to know someone foreign and exotic, and marry them. Otherwise, stick to what you know well. You’re trying to sound deep and yet your relationship to the culture isn’t deep. It’s shallow.

Not to immediately insult Dhani Harrison, but she has a point.

Having no cultural context for a name can be very problematic. What if the foreign name you’ve picked “just because it sounds nice” is widely known abroad as the name of a brutal dictator, infamous celebrity, or literary villain? If a WASPy American couple stumbled upon “Mohammad” or “Fidel” for the first time and decided to give it to their son just for the sound of it, they would be looked upon with a good deal of suspicion. In Amy Tan’s The Kitchen God’s Wife, a man returning home to China after a trip to the U.S. tricks his rival into taking on the name Judas when dealing with Western businessmen, promising him that it is the name of very well-known, powerful historical figure.

And controversy aside, phonetics often don’t translate easily across cultures. Not only are my favorite English names often butchered by German accents, but most of the German names that sound loveliest to me and my American family elicit horrified looks from my contemporaries in Berlin. (Apparently “Hannelore” is one of the ugliest names anyone could ever think of in Germany today.)

This proves, however, that it is often nothing more than a matter of taste.  One person’s tacky is another person’s terrific, and there is little we can do to change that.

 

 

Note to Artists Who Aren’t Günter Grass: Dwarfs Aren’t Children

19 Apr

La petite Géante(Image by Marc H used under CC license via)

 

German author and Nobel laureate Günter Grass passed away this week. His most celebrated work, The Tin Drum, is the story of a German boy living before, during and after the Nazi era, who decides he does not want to join the preposterously nonsensical world of adults and therefore is determined to stop growing. He throws himself down the stairs and successfully stunts his growth. Later he meets a dwarf circus performer named Bebra and joins up with him, performing on the Western front for German officers and eventually having an affair with Bebra’s lover, who also has dwarfism. The book, which involves far more storylines than I have adumbrated here, has justly earned nearly universal praise, and the 1979 film adaptation won the Oscar for Best Foreign Film and the grand prize at Cannes.

The Tin Drum is a story of magical realism that instrumentalizes dwarfism in a complex way. “Our kind must never sit in the audience,” says Bebra, “Our kind must perform and run the show or the others will run us. The others are coming. They will occupy the fairgrounds. They will stage torchlight parades, build rostrums, fill the rostrums, and from those rostrums preach our destruction.” These statements are loaded, ominously referencing dwarf entertainers like the Ovitz family who were being treated like lab rats by Dr. Mengele at Auschwitz. Günter Grass came to prominence as a leading voice in the Vergangenheitsbewältigung movement that broke the silence about his country’s crimes. Any failure to illustrate the reality of dwarfs during the Holocaust years echoes the many tales of Medieval and Early Modern courts that portray dwarf servants and jesters merely as part of the scenery while saying nothing about the fact that these people were, to put it bluntly, slaves traded among the aristocracy, sometimes in cages.

Edgar Allan Poe’s “Hopfrog,” written in 1849, is one of the few tales to allude to these human rights abuses. In 1992, the PBS American Playhouse program adapted the story as Fool’s Fire. (I was invited to audition for the part of the protagonist’s little sister. My acting career ended thereafter.) Director Julie Taymore made the decision to portray the average-sized characters in monster-like masks and the dwarf characters without:

This make-up treatment is the precise opposite of how the directors of the Harry Potter films would later chose to portray dwarf actor Warwick Davis’s goblin characters alongside the humans.

In addition to miserly goblins and slave-like elves, the Harry Potter books include dwarf characters. They are mentioned in passing as “raucous dwarfs” in a pub in the third book and reinforce the servant trope when they are dressed up like Cupid and sent through the school delivering valentines in the second book. One must wonder why the author felt the need to include them at all. They represent, if anything, yet another point at which J.K. Rowling’s chef d’oeuvre fails to be nearly as progressive as she seems to think it is.

It’s never fun to get upset about all this.  Size can be a genuinely magical idea worth playing with (as seen above).  But genuine upset tends to grow the longer it goes unacknowledged. In college I took a writing workshop where we were encouraged to write about sensitive, taboo, and offensive words. The N-word and the C-word were brought up almost immediately, and I decided to demand a debate about the M-word for dwarfs. One of my classmates pointed out, “The problem with rude stuff said about dwarfs is that it doesn’t strike us as offensive or controversial. It strikes us as funny.”

Exactly. We’re too amusing to be seen as victims. Our human rights cannot be violated because we are not fully human.

The Tin Drum is all about humanity and employs absurdist characters and events for harrowing, not hilarious effects. It is a complex novel, as is Stones from the River, a German-American war story I am inclined to prefer because the protagonist is a non-magical dwarf. After being arrested for taking a crack at the swatstika, she is hauled before a judge who reminds her that she can’t afford to speak out against Nazism when people like her are prime targets for eugenics researchers.

While The Tin Drum did not invent the idea of comparing children and dwarfs, it would be nice were it the only example of it. This has hardly been the case. It’s a gag nearly every person with dwarfism has heard for the umpteenth time. The Simpsons have done it. The brilliant comedy team Mitchell and Webb have done it. After my third-grade class watched Willy Wonka and the Chocolate Factory, my teacher pointed out—or perhaps conceded—that the Oompa-Loompas were portrayed by people who had dwarfism just like I did. One of my classmates said, “Oh no, they might have just have been children.”

I looked at her cock-eyed, thinking, How can you not tell a dwarf from a child?

The fate of the main character in the crime-comedy In Bruges hinges on the villain mistaking a dwarf’s corpse for that of a child. The joke already appears earlier in the film, when the dwarf in question explains that he’s been hired to appear in a school boy’s uniform in a cinematic dream sequence and rolls his eyes at it. This sort of we-make-the-joke-but-also-make-fun-of-it-so-that-makes-okay schtick is reminiscent of Ricky Gervais’s Life’s Too Short, of which one critic at The Quietus aptly said:

Perhaps this is some triple-axle attempt at post-post-postmodern irony, an ultra-sophisticated comedic in-joke that has tied itself up in such obscure knots it only seems crass to the un-knowing, the obtuse. Well, that’d be me because from where I’m sitting it looks like we’re supposed to be laughing at a guy for being too short.

It’s unfortunate because I really love In Bruges. Just as I love Willy Wonka and That Mitchell and Webb Look. Call it cynical, call it ironic, call it hilarious, but in these cases and so many others, deleting the dwarf characters would have allowed me to enjoy myself completely.

 

 

When It Comes To Health, Who Should Minorities Trust?

12 Apr

Modern medicine of the past(Image by photosbyflick used under Creative Commons license via)

 

At the beginning of this year, I underwent orthopedic surgery and rare complications immediately arose from it, causing me to take three months of sick leave. In that time, both my country of origin and my country of residence experienced outbreaks of measles that have set the Internet ablaze with raging arguments about medicine, personal choice and the greater good. While the critics of Big Pharma have plenty of good points, recent studies of Big Herba—which is unregulated in the U.S.—have debunked an array of flaws that can be deadly. Glossing over the vitriol, at the crux of the matter lies a very reasonable question: When it comes to health, who should you trust?

“Trust to your doctor” sounds simple enough until we consider the many instances throughout history when medical professionals have abused this trust, particularly in regard to minorities. Health organizations around the world classified gay people as mentally ill as late as 2001. A panelist on Larry Wilmore’s The Nightly Show last month cited the Tuskegee syphilis experiment, which treated African-American men like lab rates from 1932 to 1972, as the basis for his overarching distrust of government health organizations. Investigations recently revealed that the U.S. Public Health Service committed similar crimes against mental patients and inmates in Guatemala in the 1940s. The polio vaccine, which has saved millions of lives globally, was first tested on physically and mentally disabled children living in asylums and orphanages. Researchers advocated the forced sterilization of trans people and ethnic minorities as recently as 2012. And of course there were the Nazis and the many, many scientists before them who passionately promoted eugenics. ITV recently rebroadcast a documentary hosted by Warwick Davis detailing Dr. Mengele’s horrific experiments on dwarfs at Auschwitz.

In other words, minorities don’t have to dig too deep to come up with plenty of reasons to be wary of scientists and doctors. Regulation, transparency and a never-ending, highly public debate on bio-ethics and human rights are necessary to prevent such crimes from happening again.

But an ideological opposition to all doctors based on such abuses ignores the myriad successes. A Slate article appearing last fall, “Why Are You Not Dead Yet?” catalogs the thousands of reasons so many of us are living so much longer than our ancestors did—from appendectomies to EpiPens to everyday medications—which we so often overlook because we have come to take the enormous medical advances of the past 200 years for granted.

And yet, as so many scientists are only too ready to admit, science does not know everything. Almost no medical procedure can be guaranteed to be risk-free, and many people base their distrust of doctors on this fact. My current post-surgical complications were just cited to me by an acquaintance as reason enough for why I never should have had the operation at all and instead gone to a TCM healer.  

In my 33 years I have undergone 14 surgeries, physical therapy, hydrotherapy, occupational therapy, electro-muscular stimulation therapy, and the list of medications I’ve taken undoubtedly exceeds a hundred. I have also been treated with reiki, shiatsu, osteopathy, acupuncture, massage, prayer, and herbal remedies based on macrobiotic, homeopathic and detox theories. Some of these treatments I chose as an adult, and some of them were chosen for me by adults when I was a child and a teen. Some of the medical treatments worked, some didn’t, and some caused new problems. Some of the alternative treatments rid me of lingering pain, and some were a complete waste of time, money and energy as my condition worsened. I won’t ever advocate any specific treatment on this blog because my readership is undoubtedly diverse and the risk of making inaccurate generalizations is too great.

Indeed, a grave problem in the public debate on health is the frequent failure to acknowledge human diversity. Most health advice found online, in the media, at the gym or a healing center is geared not at minorities but physiotypical people, who are seeking the best way to lower their risk for heart disease, fit into their old jeans, to train for a marathon, or to simply feel better. They are not seeking the best way to be able to walk to the corner or have enough strength to shop for more than half an hour. Those in the health industry who endorse one-size-fits-all solutions—“We just need to jog/Start tai-chi/Eat beans, and all our troubles will go away!”—rarely address minority cases that prove to be the exception to their rule. But atypical bodies have just as much to teach us about our health as typical bodies, and leaving them out of the conversation benefits no one but those seeking to profit off easy answers.

When it comes to seeking treatment for my condition, I follow a simple rubric: I don’t want to be the smartest person in the room. I have no professional training in medicine or anatomy. As this physician explains so well, self-diagnosis is a very dangerous game. Yet I sometimes am the expert on my body thanks to the relative scarcity of people with achondroplasia—there are only 250,000 of us on earth, or 0.00004% of the world population—compounded with the scarcity of people with achondroplasia who have undergone limb-lengthening and sustained bilateral injuries to the anterior tibialis tendons. A visit to a healing center or a hospital often entails conversations like these:

 

Shiatsu Healer: You’re walking with a sway-back. Your wood energy is obviously misaligned because you are stressed.

Me: My hips sway when I walk because the ball-and-socket joint in the hip is shaped instead like an egg-and-socket in people with achondroplasia.

***

Physical Therapist: Your hips sway when you walk because one leg is obviously longer than the other.

Me: No, I have my orthopedist’s report documenting that my legs are precisely the same length. My hips sway when I walk because the ball-and-socket joint in the hip is shaped instead like an egg-and-socket in people with achondroplasia.

 ***

Nurse: Your temperature is pretty high. I’m a bit worried.

Me: These anesthesiology guidelines I got from the Federal Association for Short-Statured People say that hyperthermia is to be expected post-op in patients with achondroplasia.

 

Sometimes the information I offer goes unheeded. In both the U.S. and in Germany, I have found arrogance is equally common among doctors and healers. Some of them are delightfully approachable, and others are so socially off-putting that they make you want to throw your wheelchair at them. The same arrogance, however, can take different forms. I have documented before the particular brand of pomposity so endemic to doctors, and it is safe to say that holistic healers are less likely to treat their patients like products on an assembly line because, by definition, they are more likely to take psychological well-being into account. But they are also more likely to endorse a one-size-fits-all solution for health, which invariably marginalizes minorities like me.

Those of us with extremely rare conditions are far more likely to find specialists among those licensed in medicine than among alternative healers. Living Naturally, the only website on alternative treatments I could find that even mentions achondroplasia, emphasizes that none of the therapies they suggest for achondroplasia have ever been tested on patients who have it. To be fair, rare conditions by definition are not well-known to your average GP either. But physicians more often know how to work with the facts, embracing the medical literature on achondroplasia I hand to them. Some alternative healers also embrace such literature, while others dismiss anything written by anyone in a white coat.

Even when a visceral hatred of hospitals and their hosts is irrational, it is understandable. My most recent stay involved some of the kindest medical professionals I have ever encountered but nevertheless left me waiting for two and a half hours on a metal bench with no back support in a hallway glaring with fluorescent lights and echoing with the cries of patients in pain. I respect everyone’s right to opt against surgery, or any medical treatment, as long as their condition does not cause others harm. But no matter how much modern medicine has abused minorities’ trust, disabled people are the only minority that cannot afford to forgo it.

A worldwide study presented to Little People of America found that, at this point in history, dwarfs have a higher quality of life—i.e., access to effective health care, employment opportunities, acceptance in society—in Northern Europe than anywhere else on earth. Reductive arguments that demonize all of Western medicine because the Nazis! can be canceled out by reductive arguments that dismiss anything developed outside the West because Asia’s terrible disabled rights record!  

Broad generalizations like “Natural is better” can only be upheld by those ensconced in the privileges of a non-disabled body. In 2011, the parenting website Offbeat Families banned the term “natural birth”—urging writers to instead refer to “medicated” and “unmedicated” birth—because “natural” had so often been used to imply “healthier.” An unmedicated birth is wonderful for anyone who can and wants to experience it, but it is important to remember that it is a privilege. A privilege, like a disability, is neither your fault nor your achievement.      

“Healthy” is a relative idea. Our choices about our bodies will always be limited. This is a sometimes terrifying fact to face. But in the public debate, we must remember that it is a fact those among us with rare disabilities and conditions can never avoid. In failing to remember it, we fail to make decisions about human health that are truly informed.

 


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