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Who Should Think You’re Beautiful?

11 Oct

Goodnight(Image by Aphrodite used under CC 2.0 via)

From the Archives

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

Originally posted September 15, 2013

Berlin Fashion Week Features Pieces Made for and Modeled by Dwarfs

1 Oct

Auf Augenhöhe_Copyright Valerie Diedenhofen

(Image © Valerie Diedenhofen used with permission)

 

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

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

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

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

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

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

 

Auf Augenhöhe_Copyright Nina Hansch

 

 

Content Warnings and Microaggressions

20 Sep

Grunge Warning Sign - Do Not Read This Sign

(Image by Nicolas Raymond used under CC license via)

 

There’s a heated debate going over at The Atlantic over trigger warnings and microaggressions. For those less familiar with online minority rights debates, trigger warnings originated as labels for video or texts depicting graphic violence, often sexual, that could be triggering for survivors of assault suffering from PTSD. They have since evolved into “content warnings,” used to label any video or text containing arguments, comments, humor or images that marginalize minorities. I most recently ran into one preceding a beer ad in which two brewers tried to joke about never wanting to have to do anything so humiliating as dressing in drag in the red-light district in order to earn money.

Jonathan Haidt and Greg Lukianoff have argued that content warnings have led to “The Coddling of the American Mind,” a culture of silencing, wherein too many are afraid to initiate dialogue on these issues, lest they offend. They criticize restrictive speech codes and trigger warnings, and suggest universities offer students free training in cognitive behavioral therapy in order to “tone down the perpetual state of outrage that seems to engulf some colleges these days, allowing students’ minds to open more widely to new ideas and new people.”

“Microaggressions” is a term invented in 1970 by Harvard professor Charles M. Pierce to refer to comments or actions that are usually not intended as aggressive or demeaning but nevertheless do contribute to the marginalizing of minorities. Examples would be certain physicians being addressed as “Nurse” at the workplace. Or nurses, secretaries, cashiers, and storage room workers constantly hearing the widespread Western belief that low-skilled jobs deserve a low degree of respect. Or men still being expected to prove their worth through their career and never their emotional fulfillment. Or lesbians being asked if they’ve had “real sex.” Or anyone hearing from magazines, sitcoms or even loved ones that body types like theirs are something to avoid ending up with or hooking up with.

Microaggressions are the essence of insensitivity and they highlight the widespread nature of many prejudices about minorities. I analyze them all the time on this blog, without labeling them as such. Finding blogs that feature them in list-form can be done with little effort.

Citing a sociological study by professors Bradley Campbell and Jason Manning, Connor Friedersdorf has argued that calling out microaggressions on social media sites has led to a culture of victimhood, wherein the emotions of the offended always matter more than the perpetrator’s intentions. Victimhood culture is “characterized by concern with status and sensitivity to slight combined with a heavy reliance on third parties. People are intolerant of insults, even if unintentional, and react by bringing them to the attention of authorities or to the public at large.”

Cue the overemotion. Simba Runyowa rightly rebuts that many of Friedersdorf’s examples of hypersensitivity are cherrypicked, but then goes on to deny that anyone would ever want to be seen as a victim. (Not only do most petitioning groups—whether the majority or the minority—claim to be the victim of the other side’s moral failings and undeserved power, but it appears he has never tried to explain what it’s like to have a rare condition, only to be interrupted by the insistence, “I think I have that, too!”) On the other side, Haidt, Lukianoff and Friedersdorf have attracted plenty of support from those who are only too happy to believe that college campuses and the blogosphere today are ruled by the PC police, rendering such places far worse than Stalinist Russia.

I rarely issue content warnings on videos or quotations or any examples of bigotry I analyze on this blog. My primary reason is that a majority of the content we consume every day is arguably misogynistic or heteronormative or ableist or racist or classist or lookist. This does not at all mean that we should not address those problems, but demanding “warnings” on whatever has marginalized me leaves me open to criticism for not doing the same for all the other injustices I may not see.  As both a Beatles fan and a social justice blogger, I will always prefer to read or hear a comprehensive critique of John Lennon’s ableism than to see warnings on his biographies.

And I don’t label microaggressions as such because I agree with Friedersdorf that the word seems at odds with its definition. Insensitivity can be very hurtful. It can contribute to feelings of alienation by functioning as a reminder of how millions of people might think of you. But it is not aggressive. Highlighting, questioning and debating ubiquitous prejudices, stereotypes and traditions is crucial to human progress. Mistaking ignorance for hostility, however, is an obstacle to it.

Would it be accurate and productive to post something like this?

Microaggression: Having to hear yet another parent talk about how thrilled they are to have been able to give birth “naturally.”

(Avoiding C-section is never an option for women with achondroplasia like me.)  And would it be accurate and productive to something like post this?

Microaggression: Having to hear yet another childfree blogger brag about how great it is to have the time and energy to do things I’ll never be able to do like hiking or biking, let alone if I have kids.

Would it be more practical to tweet such complaints rather than pen an extensive article about the intricacies of the problem because few have time to read the particulars of considering parenthood with achondroplasia? Would posting them on a site featuring microaggressions serve as a much-needed wake-up call, convincing the perpetrators to see the issue from my perspective, or would it put them on the defensive? Would it spark dialogue or shut it down? Are the comments that marginalize my experience veritably aggressive? Feel free to share your thoughts in the comments.

But whether we think people on either side of the majority vs. minority debates are too sensitive or insensitive, we should be aiming for dialogue over exclamation points.

 

 

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

13 Sep

Jerzy body

(Image by Ekaterina used under CC license via)

 

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

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

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

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

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

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

 

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

 

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

6 Sep

Up close Star makeup mac, urban decay(Image by Courtney Rhodes used under CC 2.0 via)
 
In late 2013, journalist Katie Waldman examined the juicing trend, which was cropping up in the corners of Western society where there is a heavy focus on modern notions of “natural and organic” (think anywhere from Berlin’s Prenzlauer Berg to Burlington, Vermont and Berkeley, California) as well as in those where people competitively strive to follow the latest fashions in health and beauty (think the high-earning sectors of London, Manhattan or Los Angeles). Lifestyle writers have declared two years later that juicing has staying power, despite Waldman’s disturbing findings. Along with little to no evidence that cleansing the body with juice can be physically beneficial, she revealed that the language of most detox diets echoes the language used by those struggling with disordered eating – i.e., the idea that most of what the masses eat is on par with poison and you’re a bad person if you don’t purge it. She writes:

After days of googling, I still have no idea WTF a toxin is… Cleansing acolytes use the word toxin loosely, as a metaphor for our lapsed lifestyles…. The problem with this way of thinking is that food and weight are not matters of morality. Thin is not “good,” carbs are not “bad,” and in a world of actual pressing political and social ills, your dinner plate should not be the ground zero of your ethical renewal.

I’m neither a supporter nor an opponent of juicing in particular. Anyone should drink whatever they want to drink. But Waldman made a fantastic point about the way the upper and middle classes in the West so often believe one’s health to be a sign of one’s morality.

This idea is hardly new. The eugenics craze of the 19th and 20th centuries—that culminated with the Nazis exterminating “degenerates”—involved Fitter Families contests held at county fairs wherein judges handed out trophies to those deemed to have the best heritage, skin color, and tooth measurements. Professor Alan Levinovitz argues in Religion Dispatches that these attitudes have survived on into the present, altered only ever so slightly: “The sad thing is, it’s really easy to judge people on the basis of what they look like. We have this problem with race. In the same way, it’s really easy to look at someone who’s obese and say, ‘Oh look at that person, they’re not living as good a life as I am. They’re not as good on the inside because I can tell their outside isn’t good either.’ ”

Do we as a culture believe that being “healthy” is about appearance? Dieting often dictates that it’s about behaviors measurable through appearance. Psychologists agree to the extent that their notions of “healthy” are about behavior, but they also frequently intersect with notions of being “good.” But is being “healthy” about being brave, honest, generous and humble? Physicians would generally argue it’s about staving off death. Right-to-die advocates would argue it’s about quality of life over longevity. Is being healthy a matter of what scientists decide? Ed Cara found earlier this year that weight loss does not lead to happiness. Is happiness a measure of being healthy? Or are you only healthy if you suffer for it? Concepts of “healthy” vary vastly from person to person, and across cultures. Is that healthy?

In The Princess Bride—probably the Internet’s second-most quoted source after Wikipedia—the hero cautions, “Life is pain. Anyone who says differently is selling something.”

Yet the villain says, “Get some rest. If you haven’t got your health, you haven’t got anything.”

Whether you agree with any or none of the above, leave me your thoughts on the meaning of “healthy” either in the comments or via an e-mail to paintingonscars[at]gmail.com

 

 

The Problem of Dwarfs on Reality TV

30 Aug

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

 

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

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

I laughed and nodded reassuringly.

He was not unwise to worry.

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

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

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

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

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

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

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

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

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

 

 

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

2 Aug


 

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

 

 

Happy Birthday, ADA!

26 Jul

 

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

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

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

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

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

 

 

Difference Diaries Wants to Hear from You

19 Jul

Copyright Difference Diaries

 

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

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

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

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, mottos 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.

 

 

Why Do Names for Minorities Keep Changing?

14 Jun

midget not wanted(Image by CN used under CC 2.0 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

 
 

The Rules For A Photo Shoot

10 May

Photo Shoot ©Ines Barwig(Image ©Ines Barwig)

 

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

― Zadie Smith, On Beauty

 

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

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

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

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

I couldn’t hold back my laughter.

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

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

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

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

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

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

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

“Well, you know …”

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

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

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

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

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

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

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

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

A kind, charismatic photographer.

People who make you laugh.

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

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

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

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

“Yeah, I’ve stopped doing that.”

“Why?”

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

I smiled. “Ya think?

 

 

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

19 Apr

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

 

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

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

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

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

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

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

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

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

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

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

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

 

 

Will We Live To See The End of Dwarfism?

29 Mar

Hands

 

Prologue: My three-month long hiatus from blogging was due to tendon surgery I underwent in January and rare complications that arose from it. I am now gradually returning to work from sick leave and thrilled to be back.

* * *

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.  

 

 

 

The Best Picture Books for Preventing Prejudice

30 Nov

Book sculpture (Image by Ellen Forsyth used under CC 2.0 via)

Perhaps you are looking for gifts for little ones this holiday season. Or perhaps, like me, you simply know a staggering number of kids who will all have birthdays in the coming year. For either scenario, here is a sample of excellent—i.e., not boring or ugly—picture books that help raise diversity awareness through reading. All of these books have been featured in my workshops for pre-school teachers about helping minority children feel represented and teaching all students to see minority kids as their equals. They are divided into five categories based on objective.

***

Books That Know Not Every Family Is Upper/Middle Class with a White, Straight, Biological, Married Mom and Dad… The most delightful thing about pre-schoolers is that they have almost no idea what “normal” means. Of course they are surprised by the extraordinary, but they don’t place value judgments on it until someone older teaches it to them. Critically analyzing the media images and stories kids consume is crucial because the media not only educates them about the world beyond their doorstep, but it instills them with subconscious ideas about what kinds of people society believes deserve to appear in books, film, and television. Kids are of course individuals and some may be temperamentally predisposed toward narrow-mindedness, but a preemptive strike against prejudice never hurt anyone.

 

 

 

Tell Me Again About the Night I Was Born by Jamie Lee Curtis (available in German & Spanish) – A story of adoption as told from the point of view of the child. “Tell me again how the phone rang in the middle of the night and they told you I was born. Tell me again how you screamed. Tell me again how you called Grandma and Grandpa, but they didn’t hear the phone ’cause they sleep like logs…”

 

 

A Chair For My Mother by Vera B. Williams – A story that portrays poverty without uttering the word. The daughter of a single working mom tells of the day they lost everything they owned in a house fire. They’ve been saving up every spare cent they have to buy a big comfy armchair for their new home ever since. In the end, Mom finally has a place to lie back and rest her sore feet when she comes home from work at the diner, and her daughter can curl up to sleep in her lap.

 

 

 

Two Homes by Claire Masurel (available in French & German) – A boy proudly shows off his two homes. “I have two favorite chairs. A rocking chair at Daddy’s. A soft chair at Mommy’s.” The parents are portrayed as having nothing to do with each other, while always beaming at their son. “We love you wherever we are, and we love you wherever you are.”

 

 

 

 

 

The Snowy Day by Ezra Jack Keats (available in Spanish) – Ezra Jack Keats was one of the first American illustrators to feature everyday black children in his stories. All of his books portray kids growing up in inner city neighborhoods. This is a brilliantly illustrated, very simple story about a boy enjoying freshly fallen snow in every way possible.

 

 

 

 

 

 

Susan Laughs by Jeanne Willis – Written in verse, Susan swings, makes faces, sings songs, plays tricks, splashes in the water, rides on her dad’s shoulders, races in the back of a go-cart. Susan also happens to use a wheelchair.

 

 

 

What Makes A Baby by Cory Silverberg (available in German & Spanish) – A book about reproduction (sperm, egg, uterus) that leaves out gender (mom, dad, man, woman). No matter how many people want to ignore it, plenty of kids have been born via IVF, surrogacy, and to LGBTQ and intersex parents. This book allows those kids to have a conversation about where they came from, while emphasizing that your family is the people who were waiting for you to come into the world.

***

Books For Extraordinary Situations That Have To Be ExplainedThese stories get into the specifics of certain disabilities, conditions and diverse backgrounds, but there is no reason they should not be read to every child.

 

 

 

Thinking Big by Susan Kuklin – This book is out of print, but well worth the search, portraying a day in the life of an 8-year-old girl with achondroplastic dwarfism. She is great at painting, but needs stools to reach things at home and school. She has friends who hold her hand so she won’t get left behind on hikes, but she talks openly about the kindergartners who call her “baby.” She loves going to Little People of America meetings, but she loves being at home with her mom, dad and younger brother best of all. This book accompanied me from pre-school to fifth grade, read aloud by my new teacher to the class at the beginning of the school year in order to explain why I looked different from the others and to encourage my classmates to be upfront with their questions.

 

 

 

 

 

I Have A Sister My Sister Is Deaf by Jeanne Whitehouse Peterson– A day in the life of a hearing girl and her deaf sister. They play, argue, and help each other out, while explaining deafness as a mere difference in terms young kids can understand. The story has a gentle, poetic rhythm. On a deer hunt, the narrator explains, “I am the one who listens for small sounds. She is the one who watches for quick movements in the grass.”

 

 

 

 

 

The Black Book of Colors by Rosana Faría (available in French, German & Spanish) – Like the illustrations, everything is black for Thomas, so when it comes to colors, he smells, hears, and feels them. “Red is as sweet as a strawberry, as juicy as a watermelon, and it hurts when it seeps out of a cut on his knee.” The images are embossed for the reader to touch. The Braille alphabet is provided at the back of the book.

 

 

 

 

 

 

People by Peter Spier (available in French & German) – A superbly illustrated celebration of human beings and cultures all around the world. We have different skin colors, noses, hair styles, holidays, favorite foods, alphabets, hobbies, and homes, but we’re all people. It should be noted that this might be a bit of an information overload for children under 4.

***

Books About Moments When Diversity Is Considered Disruptive… These books empower kids who have been teased or interrogated for standing out. They can also be used to teach a bully or a clique how to understand and accept harmless differences. Some teachers rightly express concern over introducing the problems of sexism or racism to a child who has never seen a boy in a dress or a black girl before. Doing so could foster the notion that we should always associate minorities with controversy. Save them for when conflict does arise, or when the child is old enough to start learning about history and intolerance.

 

 

 

 

 

 

Amazing Grace by Mary Hoffman (available in Arabic, German, Panjabi, & Urdu) – Grace is a master at playing pretend. When her class decides to put on the play Peter Pan, she’s told by some know-it-all classmates that she can’t because she’s a girl and she’s black. She shows ’em all right.

 

 

And Tango Makes Three by Justin Richardson and Peter Parnell (available in German) – Penguins Silo and Roy live in a New York zoo and are utterly inseparable. The zookeepers encourage them to take an interest in the lady penguins so that they can soon have baby penguins, but to no avail. Silo and Roy build a nest together and end up adopting an egg. When Baby Tango is born, the three of them couldn’t be happier.

 

 

You Be Me – I’ll Be You by Pili Mandelbaum (available in French) – A biracial girl tells her white dad she wishes she looked like he does. Dad explains that he is milk and Mom is coffee, and she is café au lait. He says she is beautiful and sometimes he wishes he looked like her. Soon they’re dressing up in each other’s clothes, she’s braiding his hair, and he’s powdering her face. She wants to go into town and show Mom. On the way, they pass by a beauty shop and Dad points out how many white women are curling their hair and tanning their skin, while so many black women strive for the opposite.

 

 

“Sick of Pink” by Nathalie Hense (currently available only in German, French, Japanese, Norwegian & Portuguese) – The proud musings of a girl who likes witches, cranes, tractors, bugs, and barrettes with rhinestones in them. She knows boys who sew pretty clothes for their action figures and who paint daisies on their race cars. When grown-ups shake their heads and tell them, “That’s for girls!” or “That’s for boys!” she asks them why. “That’s just the way things are,” they tell her. “That’s not a real answer,” she deadpans.

***

Fairy Tales Beyond White Knights and Helpless Princesses… Even the most iconoclastic of people have their fantasies of love and heroism shaped by folklore. Yet the idea of revising Western fairy tales to make them less stereotypical has been met with a strong backlash. Whether or not you think it’s appropriate for kids to read Sleeping Beauty, Little Black Sambo or The Five Chinese Brothers, there is no harm in providing them with additional legends about love, valor and wisdom to make our cultural heritage more inclusive.

 

 

 

 

 

 

Children of the Dragon by Sherry Garland – Selected tales from Vietnam that rival any of the Grimm’s fairy tales in adventure, imagination and vibrancy. Many of the stories are supplemented by explanations of Vietnamese history that provide context.

 

 

 

 

 

 

Sense Pass King by Katrin Tchana – A girl in Cameroon outsmarts the king every time. Besides being one of the greatest illustrators of the 20th century, Trina Schart Hyman was a master of ethnic and socio-economic diversity in her many, many picture books.

 

 

 

 

 

 

 

Tam Lin by Jane Yolen – A Scottish ballad wherein a young maiden rescues her true love from the clutches of the evil faerie queen. In the end, she wins both his freedom and her clan’s great stone castle back. Not suitable for easily frightened children.

 

 

 

 

 

 

 

Liza Lou and the Yeller Belly Swamp by Mercer Mayer – A fearless girl triumphs over a ghost, a witch, a troll and a devil on her way to Grandma’s house in the bayous of Arkansas. Some of the best illustration there is. Think Little Red Riding Hood had she managed to outwit the wolf on her own.

 

 

 

 

 

The Talking Eggs by Robert D. San Souci – A Cinderella story of sorts set in the backwoods of the South. An elderly wise woman uses magic to help a kind, obedient girl escape her cruel mother and spoiled sister. In the end, she rides off to the big city in a carriage. (With no prince involved, this one passes the Bechdel test.)

 

 

 

 

 

King and King by Linda de Haan (available in Czech, Dutch & German) – It’s time for the prince to hurry up and get married before he has to rule the kingdom, but every princess who comes to call bores him to tears. The very last one, however, brings her utterly gorgeous brother, and the king and king live happily ever after.

 

 

 

 

The Paperbag Princess by Robert Munsch – After outwitting the dragon, Princess Elizabeth rescues the prince only to be told that her scorched hair and lousy clothes are a major turn-off. She tells him he is a bum. “They didn’t get married after all.” She runs off into the sunset as happy as can be. I have yet to meet a child who does not love the humor in this story.

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The Best Book on Diversity To Date…

 

 

 

Horton Hatches The Egg by Dr. Seuss – A bird is sick of sitting around on her egg all day, so she asks Horton if he would mind stepping in for just a minute. He is happy to help, but the bird jets off to Palm Beach the minute she is free. Horton continues to sit on the egg while awaiting her return. He withstands the wind, the rain, a terrible cold, and three hunters who insist on selling him and the egg off to the circus as a freak show. Throughout it all he reminds himself, “I meant what I said and I said what I meant. An elephant’s faithful, one hundred percent.” After he becomes a media sensation, the bird comes back to claim her prize.

Whenever I used this one in the classroom, I would ask the kids whom the egg belongs to. The 3-year-olds, with their preliminary grasp on logic, would always give the black-and-white answer: “The egg belongs to the bird because eggs go with birds.” The 4- to 5-year-olds would invariably go the other way, plunging into righteous indignation over the injustice of the bird’s demands: “The elephant! The egg belongs to the elephant because he worked so hard and he loved it so much and she just can’t come back and take it!” In the end, the egg cracks open and out flies a baby elephant bird, who wraps his wings around Horton. This is Seuss at his best, showing that loyalty makes a family.

Could FDR Be Elected Today?

26 Oct

47-96 2331(Public domain image used under CC 2.0 via)

 

If you’ve happened to set aside 14 hours in the last month for Ken Burns’ The Roosevelts: An Intimate History, which aired on public television in the U.S., you know it affords considerable attention to FDR’s disability. Most touching is a 10-minute feature about Warm Springs, the Georgia health spa and rehabilitation center for polio patients, which Roosevelt founded and which soon became his primary vacation destination throughout his political career. Former employees and patients tell of him shaking the hands and asking the names of every patient, swimming alongside them and dunking whoever got within arm’s reach.

His biographer Geoffrey C. Ward explains:

It allowed him to be unself-conscious about polio… I don’t care how magnetic or self-confident you are, or you think you are… At Warm Springs, he could: not wear his braces, and go to the swimming pool, and have everybody see how small his legs were and it didn’t bother him at all because there were people there with worse problems…

He loved being one of them and the number one of them at the same time… To see someone so famous, who suffered from exactly the same problems that you suffered from, meant an enormous amount to all of the people who went there. Most of the people who went there went there mostly out of despair, at least at first. There wasn’t any other place to go. And here was this laughing giant who would kid them, and who would make the kind of awful sick jokes about being handicapped that other handicapped people love, but that you can’t share with anybody else. He loved doing that.

FDR told the staff that all at Warm Springs were equals, and many interviewees point to this as the beginning of his dedication to humanitarian, egalitarian projects. “It is tempting and probably true to say that polio gave FDR the gift of empathy,” says George F. Will. “There was no suffering that he could not in some sense relate to. And also, just as soon as the iron [brace]s were clapped onto his legs, the steel entered his soul. By having to fight through the constant pain of therapy that was unforgiving in its demands and not very fulfilling in its success.”

FDR had intended to market Warm Springs as both a vacation resort and a health spa, hoping the profits from the hotel would fund the rehabilitation center. The hotel ultimately failed, according to Burns’s documentary, “because prospective guests were scared off by the presence of polio patients.” Outside Warm Springs, attitudes toward disabled people were hardly tolerant. When voters elected a disabled president in 1932, 1936, 1940 and 1944, they did so in spite of his disability, not in acceptance of it.

Doctors attested to his physical and mental fitness in newspaper articles that asked, “Is he healthy enough to be president?” When Teddy Roosevelt’s family publicly opposed FDR’s candidacy, his daughter Alice took an ableist tack. Her famously hyperactive father had had the strength and will power to overcome his affliction, she argued, referring to TR’s childhood bout with asthma, while FDR’s paralysis from polio was a sign of his weakness and the reason why he embraced such wimpy social policies.

And here I thought Ann Coulter was a modern phenomenon.

Both Ken Burns and Geoffrey C. Ward contend that FDR could not be elected today. Ableism was pervasive in the 1930s and 40s, and it was well understood that publishing photographic evidence of his disability—his braces hidden by the podium, his difficulty getting in and out of cars, his regular falls—would be too detrimental to his image. But the press obliged. Photos like this one remained out of the public eye. Today neither the media nor bystanders with cell phone cameras afford anyone such privacy.

Appearance is as important as ever to politicians, if not more so since images in film, in print, on television, and online are countless times more prevalent now than they were in FDR’s time. This ubiquity is both the cause and the result of our expecting to see celebrities up close and from every angle. While Germany distanced itself from the idea of demanding charm and showmanship from their political leaders in the post-war era, America became ever more preoccupied with it, giving more credence to the photogenic Kennedys than any other presidential family.

The power of representation cannot be underestimated. We all like to be able to identify with famous and successful people because it imbues us with optimism about our own chances for success. We watch documentaries about celebrities’ lives in the hopes of discovering that they are the kind of person we would like, and who therefore would like us, if they ever had the chance to get to know us. Such idol worship, whether severe or mild, is of course ultimately irrational. But it satisfies the emotional need for recognition. If we cannot go on to be president for whatever reason, we can enjoy living vicariously through someone who does.

Ward is right when he speaks of how meaningful it was for ordinary patients with polio to see a sitting president with polio. But it is discouraging to consider that only those who could make the trek to Warm Springs were able to have the experience. And it is discouraging to consider Ward and Burns’ contention with its implication that disabled people today cannot have the experience of seeing a visibly disabled president because the American people will not elect one. Are they right?

In our age of a million media images, we commonly see senators, singers, elite athletes and film stars visiting disabled and ill children to boost their morale. But none of these celebrities are simultaneously as enormously powerful and as visibly disabled as Franklin Roosevelt was. Indeed, no one since his time ever has been.

Ghost + Dwarf = Double The Horror

12 Oct

ghost(Image by Jon Feinstein used under Creative Commons license via)

 

If ghosts are scary, and dwarfs are creepy, then ghost dwarfs must be an even better bet for thrill-seekers.

This seems to be the logic behind the DREAMLAND haunted house in Cambodia, where customers pay to be terrified by extraordinary-looking people like 30 year-old Horm Sivon, whose photo is gaining international attention. She is one of 10 dwarfs employed at the house alongside other disabled people.

The owner, Hien Rensei, defends his business as one of the few opportunities disabled people in Cambodia have for employment. “Some people may consider it immoral, especially in western countries. But in Cambodia we have the situation that people with disabilities just don’t get hired,” he told The Phnom Penh Post. He spoke of his own experience with discrimination as a Cambodian living and traveling in Japan, the U.K. and Germany. “For two years I couldn’t find a job because I didn’t speak the language and at airports my passport was checked much longer than the ones of my Japanese friends.”

Emilie Arfeuil, the photographer who captured Horm, denounces this industry as “a terrible step backwards in terms of human rights, a degrading exploitation of people’s disabilities.” She has entered the photo in National Geographic’s Photo of the Year contest.

If she wins, will the proceeds go toward furthering employment opportunities for disabled people in Asia?