Tag Archives: Dwarfism

This Blog Is 10 Years Old & Beauty Has Become So Much More Beautiful

30 Jan

Welcome to sunny side! was one of the messages I received last month on my 40th birthday. I have indeed felt a glow about the whole thing. With 40 years under my belt, I’ve decided—and tell everyone I meet—that I now know everything. Joking aside, I began Painting On Scars 10 years ago this month and I know—down to the very core of my being—that so many things have gotten so much better in the last decade. Yes, some things have become horrifically worse. We’re entering the third year of an indisputably wretched pandemic, and my country of origin has been sliding down the list of robust democracies, and the partisan divide President Obama sought to overcome way back when has deepened and become more vicious no matter whom you ask. (More on that some day soon.) But Peter Dinklage is starring in his wife’s version of Cyrano, which hit theaters in the U.S. yesterday, and the way the media has responded is one of the many reasons I’m happy to be alive right now.

I’ve spent a lot of my life wondering how certain human rights movements took off when they did. The way our history books in school taught it, the Civil Rights movement was a burst of anger marking the end of the placid 1950s, brought on by certain great men like Dr. King who just suddenly got the idea to end Jim Crow. We never learned about all the activists fighting to ban lynching long before Dr. King or the family of Emmett Till, and we never learned how the Nuremberg Trials and Holocaust studies facilitated conversations about racism. Minority rights’ movements always seemed to come of out nowhere, led by great individuals. Lessons in school easily led us to believe that before Frederick Douglass, Susan B. Anthony or Harvey Milk, no one had ever heard of equality for Black, female or gay citizens.

It wasn’t until the social justice movements that we’re observing now—the New Left, the wokeness or whatever you want to call it—that I really understood how a movement breaks into the mainstream from the margins. It begins in activist circles and, with success, the circles begin to expand until one day you realize those high school friends who rolled their eyes at any talk of gay rights are putting up marriage equality logos on their social media accounts. Many in the mainstream feel that all this talk about trans rights and genderqueer rights, Black Lives Matter and #MeToo has been sudden, and they are not entirely wrong. The farther you are from the margins, the less likely you are to have heard the conversations that have been going on there for so long.

When I began Painting On Scars in 2012, Peter Dinklage won his first Emmy award for his role on Game of Thrones and at the ceremonies he made a brilliantly crafted plea to end dwarf-tossing. Mainstream media sources reporting on it implied via tone that the right to have one’s bodily safety and autonomy respected was not too much for men “suffering” from dwarfism to ask. But no mainstream journalist dared name any people or systems that had allowed dwarf-tossing to be seen as nothing more than a joke – like, for example, the bars that ran dwarf-tossing events, the politician who tried to remove a Florida ban to “stimulate the economy” or the creators of the hugely successful Lord of the Rings films. Dinklage was hailed as one of the best things about Game of Thrones, his alma mater invited him to give the commencement address, and Rolling Stone declared him a “Sexy Beast.” But his success was handled as an individual case. The argument that Hollywood should expand leading roles beyond its awfully short list of acceptable body colors, sizes and shapes remained at the margins. In the mainstream, it was at best acknowledged as a quaint pipe dream. Now Dinklage is on the media circuit for Cyrano and journalists are rolling their eyes with him at such passé limitations of imagination. What a difference a decade makes.

In 2012, debates about the lack of casting opportunities for actors of color and with disabilities were happening on places like feministing.com and The Patt Morrison Show. (Ever heard of it?) Not the Sunday Times. Leading men were overwhelmingly white, non-disabled and very, very, VERY not feminine. Flash forward to today and Timothée Chalamet has been hailed on both sides of the Atlantic as a sex symbol, the male actor of his generation and, repeatedly, a softboi – one of many men enjoying mainstream success who feel as free as women to be masculine or feminine or a nuanced version of both. Or neither. In 2012, Eddie Izzard was the only male known around the world for wearing dresses and makeup unironically. In 2012, few would have believed an out and proud rapper could flourish outside the queer community let alone top the charts, as Lil Nas X has. In 2012, no one in the U.S. could name a transgender celebrity of any considerable renown. It would have been all too easy to imagine the producers of normcore Jeopardy! declining the application of a transgender woman on the grounds that such a contestant would be, you know, distracting. This week, Amy Schneider ended her winning streak on Jeopardy!, the second longest in the show’s 56-year-history. When she was recognized in the stands at a Warriors game, she received an ovation from the crowd. You know something’s shifted in the mainstream when basketball fans hail you as a hometown hero.

The growth in acceptance of so many different minorities signifies a broader awareness of intersectional social justice – the understanding of how different minority issues overlap. As Peter Dinklage recently told the Times, “The idea of a leading actor is changing now. Whether racially or whatever. It’s about time. We’ve been stuck with this stereotype of a leading man and it’s healthy to open that up. Love life is not the domain of pretty people – everybody has a love life.” Pretty has gotten so much prettier.

We can’t let this movement turn out to have been just a moment. And reducing bias and hate in the mainstream should never be mistaken for eradication. In 2012, five years before #MeToo, blatant sexual harassment and assault in the workplace were considered to be little more than shocking scenes seen on Mad Men, there to show how much had changed. HR departments and the women’s movement were thought to have made enough strides to render harassment the problem of just a few bad apples. Your willingness to believe a politician’s accusers fell heavily along party lines. And we were convinced of this as men like Harvey Weinstein were not only breaking into womens’ rooms at night, but doing so as his coworkers rolled their eyes and sighed, “Oh, that’s just Harvey.”

For all my pleasure at Peter Dinklage’s star treatment this month, the risk remains that he will be an anomaly among dwarf artists rather than a trailblazer. No other person with dwarfism has reached anywhere near his level of international renown in the decade since his first Emmy win. Marlee Matlin’s success in the 80s and 90s was followed by little else for the Deaf community. This fall’s acclaimed crime series Only Murders in the Building broke new ground by featuring an entire episode in American Sign Language led by a Deaf supporting character. That episode was excellent and its moment of upfront, vicious ableism made my heart jump into my throat because it rang so true. But could an entire series with a physically disabled leading man attract so much acclaim? Could it survive beyond one season, or remain a gimmick? How about several series starring disabled actors?

We can’t ever allow the comfort of success for marginalized minorities to devolve into complacency. 100 years ago, my beloved city of Berlin showed that mainstream tolerance of queer and intersex citizens could rapidly erode into tolerance for those who sent them to death camps. Explicit hate and danger remain very real threats today. And there are still far too many well-meaning but harmful assumptions left in the world to consider it equally safe and welcoming to all. For all of Dinklage’s applause for the new opportunities we’re witnessing in Hollywood, he had nothing good to say this week about the latest news of Disney’s live-action remake of Snow White and the Seven Dwarfs:

They were very proud to cast a Latina actress as Snow White… Take a step back and look at what you’re doing there. It makes no sense to me. You’re progressive in one way and you’re still making that f***ing backward story about seven dwarfs living in a cave together? What the f*** are you doing, man? Have I done nothing to advance the cause from my soap box? I guess I’m not loud enough. I don’t know which studio that is but they were so proud of it. All love and respect to the actress and all the people who thought they were doing the right thing. But I’m just like, what are you doing? … If you tell the story of Snow White with the most f***ed up, progressive spin on it? Then, yeah, let’s do it. 

Disney claims to be “consulting” the dwarf community in order to portray the seven men as respectfully as possible. In the vein of Dinklage’s suggestion for a truly progressive spin on the story, I think Disney should take inspiration from the several living room productions of Snow White I roped my friends and cousins into that starred yours truly. What could be more radical than to have Snow White—the young woman considered so extraordinarily beautiful by the queen she needed to be killed—portrayed by someone with dwarfism? Kids of any body type, gender or skin color who have loved the fairy tale for its drama should be able to grow up to play the star. But do we think the public’s imagination could go quite that far? Are we there yet? If not, what will it take?

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“Somebody Was Doing the Lion King Thing…”

2 Jun

 

Leaving you this week with the above BBC video of Things Not to Say to People with Dwarfism. With candid personal stories ranging from awkward jokes to physical abuse and assault, discretion is advised. This is not your typical the-only-disability-is-a-bad-attitude public service announcement. Kudos to all involved for the honesty. And to the rest of us, what are we still doing that allows these incidents to continue and pervade?

 

 

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“Midget-Wrestling” Events Canceled in the UK

16 Sep

Learn respect (Image by Duncan C used under CC 2.0 via)

 

Thanks to an online public outcry organized by members and supporters of the Restricted Growth Association, a handful of “midget wrestling” events have been canceled in the United Kingdom. The objectification of people with dwarfism in freak shows spans from the Early Modern Era’s court jesters well into the present day at dwarf-tossing events, “mini” cover bands, dwarf theme parks, and on reality TV shows. This is the first time in recent memory a certain freak show has not simply been condemned by human rights activists but in fact terminated. 

As Erin Pritchard writes in The Independent: “We do not put people who use wheelchairs, people who are deaf or blind, or people with learning difficulties on a stage and laugh at them.”

Then again, let’s not give the reality TV producers any ideas.

 

 

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Dwarfs in Art & Shakespeare

19 Aug

 

Leaving you this weekend with a tip to watch Dwarfs in Art: A New Perspective, which airs tomorrow night on BBC 4. I’ve long documented portrayals of dwarfs throughout history on the blog and this documentary promises to go into greater detail. Several of the portrayals of dwarfism are well-known enough to have become stereotypes dwarfs must combat with regularity – which is quite absurd when you consider how rare the condition is.

Featured in the documentary is academic Tom Shakespeare, who regularly writes about disability and bio-ethics, and has achondroplasia like I do. He is a professor at the University of East Anglia and a frequent contributor on the BBC with thought-provoking arguments on issues ranging from physician-assisted death to religion vs. spirituality to bucket lists. I’ve featured an interview with him from his project Disability and Sexuality (see above) because he deserves recognition far beyond the British Isles.

 

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In Dwarf News

22 Jul

 

John Oliver kicked off the month with an excellent report about the complexities of gene editing. (See above.) Unlike most reporters of these issues, he manages in few words to explain precisely why ridding the world of genetic mutations like deafness and dwarfism should not be the solution to the problem of society’s hang-ups about bodily differences.

Meanwhile, Andrew Solomon’s Far From the Tree, which I have referred to as The Best Book of the 21st Century, has been adapted into a documentary out this week in the U.S.

In less wonderful news, a Silicon Valley paper has uncovered an Amazon proposal for a newly patented robot that throws warehouse products into bins. The hypothetical item referred to 17 times in the illustrations that the robot could throw is a dwarf. Little People of America is not amused. Kudos to reporter Ethan Baron for shedding light on an issue few would more than laugh at.

 
 

 

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Rebecca Cokley & Never-Ending Diversity

28 Jan

Light Box Body(Image by Luca Rossato used under CC 2.0 via)

 

Leaving you this weekend with a link to an excellent personal essay and video published at CNN.com last month by Rebecca Cokley, a civil rights lawyer who worked in the Obama administration. The granddaughter of a segregationist judge, Cokley has achondroplasia and her average-size husband is African-American. She writes about the ramifications of these intersections for her two children who also have achondroplasia. She writes about the doctor who planned to sterilize her without consulting her. And she writes about the mistreatment she experienced at last year’s Women’s March:

People often act as though disabled people don’t have a right to bodily autonomy. When I attended the women’s march in D.C. in January, I was repeatedly grabbed and manhandled by women who wanted to know where was my mommy and why didn’t I know better than to wander away from her. They all looked shocked when I responded, “I am the mommy,” but not a single one apologized to me.

In the video, she also delves in to the many ways in which she and her family are privileged.

Profiles of people with dwarfism are rarely brave enough to venture beyond the comforts of human interest stories and into the very real but hard political realities. (I know. I google them weekly.) And most headline the subject as “small but [insert compliment here].” This piece is definitely worth your time.

 

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It’s Dwarfism Awareness Month and I’m Aware that Most of Us Don’t Understand Genetics and Medicine

8 Oct

Bones(Image by Gema used under CC 2.0 via)
 
 
“Hey, I had a test question about achondroplasia today!” an old roommate of mine reported to me a few years back. He was a medical student and had been studying for his licensing exam.

“Oh, yeah?” I asked. “What was the question?”

“Whether or not achondroplasia affects intelligence.”

“And the answer was…?” I smiled.

“The answer was no,” he replied, returning the smile.

That this was a test question implies a necessity for teaching this fact. Indeed, for a good part of modern history, children with achondroplasia and other types of dwarfism were too often assumed to be intellectually disabled and placed in institutions or special ed classes for life. Hence a meme from Little People of America that’s been floating around the Internet in honor of Dwarfism Awareness Month: “A common misconception about people with dwarfism is that they are cognitively delayed or mentally impaired. This is NOT true.” Activism will remain crucial until this misconception is no longer common.

What are the chances that it ever will be? Equality and empathy are the heart of every human rights movement, but these ideas alone did not disprove the idea that lower than average height is indicative of lower than average intelligence. Science did that. The scientific method uncovers the facts. Political activism spreads the word.

Despite what some extremist conservatives claim, science doesn’t have a liberal bias. It often reveals facts upsetting to many. For example, contrary to some Dwarfism Awareness campaigns, people with achondroplasia cannot be anything they want to be. They cannot be construction workers, gymnasts, military combatants, weight lifters, or participate in most contact sports because the achondroplastic spinal column is compressed, rendering these activities more life-threatening for us than for most people. That’s a scientific fact.

It need not be a cause for regret. I don’t consider a life without the ability to participate in contact sports or construction work any less enriching than a life without the ability to sing on key or identify bird calls or cut hair or write without spellcheck. (When I’m feeling snarky, I steal a line from this movie: “Dear White People on Instagram: You own an iPhone and you go on hikes. We get it.”) Competitive and aggressive feats of strength can be a way to be a stronger person, but they are not the only way. You can tell me a million times that I cannot safely lift anything heavier than a small child over my head and I will never take it as an insult.

What is insulting is to tout broad assumptions about conditions and bodies as facts when they have not been corroborated by several studies. Someone with dyslexia is unlikely to master a word scramble, but that does not mean she cannot be a skilled writer. Someone with Down Syndrome cannot practice medicine, but that does not mean he cannot get a job. If you hear that people with dwarfism cannot have a high IQ, teach, drive, play tennis, perform surgery, give birth, or take care of children, these are not facts. They are assumptions. Yet they have been dispersed far and wide, terrifying far too many people with dwarfism and their parents.

Having a rare genetic mutation has taught me that teaching science to the masses is hard. Most of us who are not scientists develop our understanding of medicine based on doctor’s visits, pop science news articles, and hearsay, as opposed to peer-reviewed research published in medical journals or textbooks. This is to be expected—when was the last time I read a medical journal straight through?—but it results in all sorts of inaccurate and potentially dangerous assumptions.

When I recently tried to explain to some new friends that the gene for achondroplasia is dominant, one insisted, “Achondroplasia can’t be dominant because then most people would be dwarfs!” Wrong.

When my parents visited one of their first Little People of America meetings shortly after I was born back in the early Eighties, one volunteer said, “Dwarfs don’t live as long as average-sized people do because they have to walk twice as many steps in their lifetime.” Also wrong. The most common cause of lower life expectancy among dwarfs throughout history has been a lack of access to appropriate health care due to social marginalization.

When a journalist asked the owner of a Hollywood freak show last year why one of his main performers had died at the age of 32, he replied, “A lot of them don’t have long life spans. Little hearts and the whole thing.” The reporter revealed in his excellent exposé of the depressing freak show business that the performer in question died of alcoholism.

My career as a writer has helped me see how much we love stories that are both out of the ordinary and easy to understand. My dwarfism has caused me to be confronted with the ubiquity of scientific misinformation in these stories and has helped me see how xenophobia facilitates the lazy thinking perpetuating scientific myths about minorities. Black Americans can’t swim? More like they were barred from learning how. Half of gay male teens have AIDS? File that one next to the Victorian belief that masturbation causes blindness. Women don’t have the skills to be Silicon Valley programmers? In Western cultures where men are expected to be bread-winners, women have been dissuaded from pursuing the highest-earning jobs, whether we’re talking about doctors and nurses, professors and school teachers, or milk men and milk maids.

This is why I approach most scientific and medical “facts” uttered to me with a heavy dose of skepticism. This can be draining. Some days I would like to simply trust Google or a Facebook Group for dwarfs instead of having to track down out-of-print medical textbooks or wait months for my orthopedist to have a free appointment in order to find it out if I should be concerned about osteoporosis or fibroids. But doubt is the fuel of innovation and vigorous research ultimately harms no one.

And when facing complex disabilities and learning about what certain bodies absolutely can and cannot do, we should not confuse being talented with being good. Just as it is hard for us to resist a fascinating story, it is hard for us to resist the idea that strength of body and mind also indicates strength of character. But acing any sort of competition says little about your ability to be brave, honest, generous or humble. Need proof? Celebrity scandals are but a Google search away.
 
 

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When A Hero Comes to School

30 Jul

IMG_7178(Image by Gordon Tarpley used under CC 2.0 via)

Leaving you this weekend with a short video of British actor Warwick Davis’s visit to a Nottingham primary school to explain dwarfism on behalf of Jasmine Chapman, a pupil with dwarfism who had asked Davis to come.

Davis has starred in a variety of block-buster fantasy films alongside the likes of Daniel Radcliffe, Val Kilmer, Diane Wiest, and Carrie Fisher. While his average-sized co-stars have had careers expanding far beyond the fantasy genre, Davis has not. This is frustrating.  As I’ve written before, it’s a problem that almost no disabled actors are famous, and the tradition of dwarfs in fantasy is complicated. Davis’s role in Ricky Gervais’s one-season-long series Life’s Too Short was even more so.

But most primary school children are unaware of all that. And sometimes that’s a good thing. I had a crush on Davis as a child after first seeing him in Willow in 1988. He had a lovely speaking voice replete with British accent and lovely long locks and he ended up the hero. I bought it. I was blissfully ignorant of the clash between adults telling me I could be anything I wanted to be and the reality of the job market for people with dwarfism at the time. Children need heroes.

I watch the video of nine-year-old Chapman sitting next to Davis as he explains that he and she are only different by virtue of their size and otherwise just like everyone else – sidestepping the intricate issues like chronic pain, necessary surgeries, disability funding, bioethics, political correctness, beauty standards, street harassment, and job discrimination. I watch the way he holds the kids’ attention by reiterating his lines as Professor Flitwick in the Harry Potter films. I watch it and I know that at Chapman’s age, I would have simply loved every minute of it.

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“A Publicly-Funded Freak Show in the 21st Century”

11 Jun

Jester (Image by Quinn Dombrowski used under CC 2.0 via)

 

This satirical video advertising a “fidget midget spinner” appeared this week on funk, an online media site owned by Germany’s public broadcasting channels ARD & ZDF. Michel Arriens, president of Germany’s Federal Association for Short-Statured People and their Families (BKMF), released a video in response. He argues:

“Midget” means “dwarf” and as a short-statured person, I do not want to be referred to that way. “Midget” is a slur in America, in Germany. And short-statured people are short-statured people. And I am Michel and I have many abilities and maybe some faults, too, but I do not want to be compared to a dwarf or a Lilliputian because Lilliputians come from Gulliver’s Travels and dwarfs appear in Lord of the Rings, but I’m from Hamburg and I’m made of flesh and blood, and you don’t seem to get that.

I demand that you immediately delete this video, apologize to the community and in the future use our tax money for better, more sensible things than ableist, inhumane  s***. 

Funk has not deleted the video, but posted the following a statement directly below it:

Hey Everyone: After hearing your reactions and discussing this issue both within our team and with Michel Arriens, we have decided to leave the video here because we don’t want to put an abrupt end to the discussion. We did not wish to hurt anyone and yet we obviously did – and for that we want to apologize. If you are interested in learning more about short-stature, we recommend visiting the website of the Federal Association for Short-Statured People and their Families at www.bkmf.de. We are also grateful to you for getting this discussion started with your comments and we want to continue to learn about this subject in more depth.

Funk’s apology appears as sincere as the original video is cringe-worthy. The supposed hilarity too many find in short-stature continues from the courts of Medieval and Early Modern Europe on into the present day comedy of online videos, sitcoms, dramas, sketch shows, late night shows, and art-house films.

As for Arriens’ argument about words, here in Germany the word “dwarf” („Zwerg“) is used to refer to little old men featured in fairy tales and the fantasy genre, and it is also commonly a pet name for little children. It is therefore considered a slur. Over the course of the disability rights movements of the last few decades, the medical term “dwarfism” (“Zwergwuchs”) has been dropped and replaced with “short-stature” (“Kleinwuchs”). 

Such a change has not occurred in English—or French or Swedish or Spanish—medical terminology, which is primarily why I use the terms “dwarf” and “dwarfism” on the blog, much to the chagrin of many of my German friends. I have written extensively about make-believe dwarfs and the problem of lookism in both the fantasy genre and the real world. The debate over terms may be never-ending, but hopefully the same will not hold true for the debate over freak shows.

 

 

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“Sometimes It’s Better to Deal with a Terminal Illness Than to Live with a Dwarf for the Rest of Your Life”

19 Mar

body(Image by Anthony Easton used under CC 2.0 via)

 

A Sydney woman has been declared fit to stand trial after being charged with murder for the 2010 death of her infant daughter. The judge has concluded that before the child died, the mother was “obsessed with perfection,” and was panicked that her daughter had achondroplasia, the most common type of dwarfism. She insisted that skin tags, a flat nose, and the shape of the baby’s forehead were proof of the condition, and subjected her to rigorous x-rays and genetic tests, which all came back negative. The Sydney Morning Herald reports: “When one friend got ‘fed up’ and told her she wasn’t dealing with something like cancer, the mother replied: ‘Sometimes it’s better to deal with a terminal illness than to live with a dwarf for the rest of your life.’ ”

That her daughter did not have achondroplasia is wholly irrelevant. Neglecting or harming a child on the basis of a bodily deformity she did or did not have is tragic no matter how you cut it. It sends two extra shivers down my back stemming from the fact that I have achondroplasia and would have a 50% chance of passing achondroplasia on to any children I were to have biologically. In several previous articles, I’ve examined the complicated issue of children with rare conditions and parents who lack the skills to give them the support they deserve. I am equally preoccupied with what it means for the child and what it means for the parent.

I’m not interested, however, in judging the accused woman personally because we can draw few accurate conclusions from the reports of her case. Many will argue that her schizophrenic disorder was the sole catalyst of her actions, while many experts on mental illness have tried to convince the hard-to-convince public that having schizophrenia does not make someone more likely to commit murder or manslaughter, and bigotry against achondroplasia is certainly not a symptom of the illness. Schizophrenic disorders are complex, and armchair diagnosis is a dangerous game far too many of us like to play. The temptation is best left resisted.

But it is safe to say that the likelihood of incidents like these would dramatically decline if our society saw nothing wrong with looking like a dwarf. Humans have a long history of parents abandoning or murdering deformed or disabled children. It goes as far back as Ancient Sparta and was codified into law here in Germany under the Nazi regime. And even in cultures where disabled or deformed citizens have generally not had to fear a death sentence, being humiliated or abandoned for having a certain body type is horrid enough. Firm belief in bodily hierarchy can be found in countless corners of modern society, from the glossy pages of lifestyle magazines, to Nobel Prize winner James Watson’s lectures on inherent attractiveness, to capitalist icon Ayn Rand’s arguments about who should be considered subnormal. 

Yet while the long history of ableism and lookism may be a daunting fact, it is also a fact that fashion is constantly in flux. Humanity’s habit of relentlessly coming up with new ideas for how bodies should look is a cause for hope. Not because a woman with achondroplasia winning a beauty pageant could ensure our universal acceptance once and for all. It couldn’t. But by understanding how utterly diverse beauty standards, athletic standards, and intelligence standards really are throughout time and space, and by facing the very real dangers of xenophobia in extremis like the horror in Sydney, we should be able to agree that we’re all better off never being “obsessed with perfection” when it comes to bodies.

 

 

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Disability & the Politics of Shoe-Shopping

16 Oct

Fashion(Image by Thomas Hawk used under CC 2.0 via)

 

“I like them,” I said, eyeing the smart and slinky black sneakers in my hand, “but my orthotic inserts don’t find inside.”

The saleswoman shook her head sympathetically. “These doctors just don’t understand. They make it so difficult for women looking for shoes.”

Um, I don’t think that’s who’s making it difficult, I said to myself. Because she isn’t the one flooding the market with shoes that discriminate against disabled bodies, it didn’t feel necessary that this one saleswoman be confronted with the issue. But we as a society probably should.

If I don’t wear my orthotics, I burden my achondroplastic back in very unhealthy ways. The same goes if I wear heels regularly, instead of only occasionally, as my orthopedist advises. When I was younger I would often flout the rules, but my tolerance for pain-inducing shoes has lessened since I turned 30 and needed back surgery to avoid paralysis, as one-third of all people with achondroplastic dwarfism do. A friend who has undergone a few operations on her spine absolutely cannot wear heels. Yet wearing orthotics every day is not seen as being healthy and responsible in the same way that, say, running a marathon is.

Will chronic pain management never be seen as bad-ass because it lacks the thrill of breaking records or leaving others in the dust? Or is it because it defies the “no pain, no gain” rule? In which case, foregoing orthotics and swallowing the pain would seem to be the bad-ass choice.

“Oh, I rarely ever wear my orthotics!” two non-disabled women told me years ago.

Eat something sugary or fattening and you can easily attract disapproving looks or even commentary. (“Do you know how many calories/toxins are in that?!”) But risk back pain in a pair of stilettos that make you teeter like a giraffe and you’re suffering for beauty like any self-respecting woman would.

Why? Is it because, as Jessica Valenti wrote last year, too few woman are willing to endure “the social consequences of aesthetic apathy”? Does bodily beauty always require some degree of discomfort? Even the love-your-body yoga crowd pushes the back-to-the-earth barefoot aesthetic, which can be supremely painful for many disabled people.

Fashion is fickle and ever-changing. In a world where humans can find beauty in everything from body-builder biceps to heroin chic, and switch from viewing heels as manly to sexy, it seems possible for us to stop marginalizing and perhaps even some day tout medically responsible choices as fashionable choices. Why haven’t we managed this yet? What will it take to get us there?

 

 

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Auf Augenhöhe – A Film about a Boy’s Search for His Father Who Happens to Have Dwarfism

9 Oct

  

Auf Augenhöhe (“At Eye Level”) is a German film by Joachim Dolhopf and Evi Goldbrunner currently playing in theaters across the country, starring Jordan Prentice and Luis Vorbach. Michi (Vorbach) is an 10-year-old foster child living in a home. He’s at the age where put-downs and one-upmanship are conversation-starters both at breakfast and on the basketball court. Dissing your opponent’s family is standard fare, but it carries extra weight for him and his housemates, many of whom were neglected or abused by their parents. Michi was raised as a toddler by a single mother until her death. Since the identity of his father is unknown, he can and does make up stories about how cool his dad must be whenever he needs to swagger in front of his friends.

Early on in the film he discovers a letter at the bottom of a keepsake box addressed to his father, Tom Lambrecht, who lives not far away. Michi heads to his house and leaves a letter under his door, explaining who he is and inviting him to meet at the foster home. On his way out, a neighbor points him in the direction of Tom’s rowing team. Michi heads over and hears someone utter his father’s name. The man who answers to the name is curly-haired and 4 feet tall (1.24 meters). Michi runs away.

Previously unaware he ever had a child, Tom is shocked to discover his son’s letter and worries about the prospect of meeting him. He is fearful of how his son might react to his size. “And what if he’s short-statured, too?” he asks a friend. “He’ll blame me.”

“Well, it means he’ll already know all about it,” his friend shrugs.

Tom shows up at Michi’s foster home and in this moment Michi’s world of pre-teen posturing transforms into a nightmare right out of Lord of the Flies. He and his father are shoved, screamed at, mocked, grabbed and pelted with chips until neither of them can hide their tears. The scene is painful because no amount of Tom’s attempts at being the adult in the situation can protect either of them. After Tom leaves, the bullying remains and takes on more sadistic forms. A garden gnome hanging from a noose outside his window drives Michi to run away and show up again on Tom’s doorstep, insisting he live with him. Tom agrees, but their problems are far from over.

Michi blames Tom for ruining the life he had by entering it. Tom is riddled with guilt and endures his son standing 10 feet away from him in public. Kids from the foster home show up and spray-paint “Verräter” (“traitor”) on their apartment building.

It’s reminiscent of another German film, Young Törless (1966), which like Lord of the Flies sought to pinpoint the roots of the Nazis’ cruelty by examining bullying at a turn-of-the-century boarding school for boys. Auf Augenhöhe adds the emotional problems of young people failed by neglectful parents into the mix. But it doesn’t let non-orphans off the hook either.

Because an even more painful scene soon follows when Tom is at the gym with his rowing team. Two gawking men creep up behind him to snap a photo—a common humiliation for people with dwarfism today, as I’ve written before—but his teammates come to his defense. They are successful in getting an apology out of the perpetrators because there are only two of them. The moral of this film, Young Törless and Lord of Flies could well be that no good comes of allowing the mature to be outnumbered by the immature, no matter their age.

After the incident, Tom lashes out at his friends, accusing them of only defending him out of pity. This was the hardest scene for me to watch because I could understand both sides of it. No matter how self-confident you are, the knowledge that a good deal of the world can’t handle your Otherness feeds paranoia. In moments when people in power strike you down, that paranoia can rise up and reign supreme, making you doubt the open-mindedness of everyone around you. Yet to act on such paranoia is rarely helpful, and Tom later apologizes at the next rowing practice.

Hours later in the bar, his friends insist that they should apologize. “I’ve got to admit I always assumed things were easier for you than they actually were,” one of them says. “And yet if I’m really honest with myself, I am glad I don’t have to deal with the problems you do.”

“Thanks for your honesty,” Tom nods.

Michi is also granted such honesty from a few peers over time. And of course he and Tom gradually warm to one another as odd couples in film are wont to do. Auf Augenhöhe has been marketed as a family comedy, and for that reason I had feared a predictable schlockfest of sight gags, height puns and an overly simplistic sing-song that we’re all the same inside! But the film is more contemplative than that. It’s heavy on dialogue, largely avoids clichés, and the acting is excellent.

There aren’t even that many jokes. Scenes of Tom standing in a streetcar, nearly smothered in the crotches of other passengers is presented soberly, not for laughs or tears. A young viewer sitting next to me smirked at the image of Tom using a step-stool to look through a peephole, but the film presents the adaptations in his car and around his apartment so matter-of-factly that any air of novelty quickly fades away. The biggest play on height comes when Tom turns it around to his advantage. When he lets Michi drive donuts in an empty parking lot, a police car pulls up. Tom switches back into the driver’s seat and puts on Michi’s hat before the police officer opens the door and is surprised to find an adult at the wheel.

“Honestly, officer, that we dwarfs are so often mistaken for children is quite humiliating. I think I’m going to need another session with my therapist to get over this,” Tom deadpans.

The officer issues his sincerest apologies before walking away and leaving father and son to burst into giggles.

That Luis Vorbach and Jordan Prentice develop such a chemistry on screen is all the more impressive in light of the fact that the Canadian Prentice delivered all his lines in English, which were then (almost seamlessly) dubbed over in German. I don’t know what that says about the state of job opportunities for German actors with dwarfism today, but in this case, the result is a cast of characters who are completely believable. This is no small feat when we consider just how many triumph-in-the-face-of-adversity films take the easy route with angelic and diabolical caricatures we only ever see in our fantasies. And Prentice redeems himself as an actor after his role in In Bruges (2008) and all the failures of that film to avoid freak show humor.

Three-quarters through the story there is another plot twist that borders on soap-opera. I won’t say anything about it other than that foster children or social workers may want to contest its credibility. But it gets a point across, and it’s a good point to make.

Glancing at the six other families in the theater with me at the screening—all of their children roughly the same age as Michi, some of them visible ethnic minorities—I wondered what kind of film they had been expecting. Were they drawn by the subject matter? Or by the trailer that makes the film look a lot goofier than it is? No matter what they were hoping for, I’m glad they saw it.

 

 

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It’s Dwarfism Awareness Month!

2 Oct

x-ray of a dwarf(Image by Lefteris used under CC 2.0 via)

It’s October, so you know what that means. Here’s one of the most popular pieces from the Archives:

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Garden gnomes are frawds.

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

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

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

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

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

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

 

 

Originally posted in October 2013

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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.

 

 

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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?

 

 

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Can Hobbits Be Human?

12 Jun

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

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

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

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

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

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

 

 

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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.

 

 

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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.

 

 

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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.

 

 

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Curiosity Kills the Rat

19 Oct

From the Archives

 

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

— Michael Franti

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

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

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

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

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

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

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

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

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

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

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

 

 

Originally posted May 19, 2012

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