The Problem of Dwarfs on Reality TV

30 Aug

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

 

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

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

I laughed and nodded reassuringly.

He was not unwise to worry.

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

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

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

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

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

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

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

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

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

 

 

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

2 Aug


 

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

 

 

Happy Birthday, ADA!

26 Jul

 

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

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

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

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

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

 

 

Difference Diaries Wants to Hear from You

19 Jul

Copyright Difference Diaries

 

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

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

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

Face-palm.

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

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

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

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

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

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

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

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

 

 

High Schools Fight to Keep Midgets As Mascots

12 Jul

(Via)

 

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

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

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

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

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

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

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

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

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

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

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

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

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

 
 

Mother Petitions to End Germany’s Nationwide Youth Games

5 Jul

BXP135660(Image by Tableatny used under CC license via)
 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

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

28 Jun

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

 

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

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

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

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

* * *

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

No One Should Be Proud to Wave That Flag

21 Jun

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

 

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

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

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

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

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

Point taken.

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

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

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

We are all speechless as he turns and leaves.

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

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

That the button is not okay.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


 

Why Do Names for Minorities Keep Changing?

14 Jun

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

Interview on Berlin Television

6 Jun

©Ines Barwig(Image ©Ines Barwig)

 

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

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

 

GoogleTranslate

 
 

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