It’s Dwarfism Awareness Month!

4 Oct


From the Archives:


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Garden gnomes are frawds.

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

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

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

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

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

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



Originally posted in October 2013

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

Look at my face/s(Image by NNelumba used under CC license 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]



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.


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]



High Schools Fight to Keep Midgets As Mascots

12 Jul



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

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

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

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

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

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

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

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

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

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

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

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

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


Mother Petitions to End Germany’s Nationwide Youth Games

5 Jul

BXP135660(Image by Tableatny used under CC license via)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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



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

28 Jun

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


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

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

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

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

* * *

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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



No One Should Be Proud to Wave That Flag

21 Jun

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


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

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

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

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

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

Point taken.

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

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

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

We are all speechless as he turns and leaves.

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

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

That the button is not okay.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


Why Do Names for Minorities Keep Changing?

14 Jun

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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



Interview on Berlin Television

6 Jun

©Ines Barwig(Image ©Ines Barwig)


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

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




How Much Does Height Matter To You?

31 May

Mann und Frau


I’ve said it once and I’ll say it again. I did not undergo limb-lengthening to “look normal.” I did it to function better in everyday life with less difficulty and less pain. Height has mattered tremendously to me as an issue of accessibility. But as an issue of social interaction, I tend to find it only slightly more significant than eye color.

Throughout high school, I had a Yoko Ono quote taped to my bedroom wall: “You call me ‘little,’ but I have a universe in my head.” Every teen needs role models. I got excited when I lived for six months in southern France, where I encountered several women my size. There is something inexplicably pleasing about being at eye-level with someone. Which is what made the many moments when guys have gotten on their knees for me utterly touching.

But my husband stands at 6’5” (1.96 m), more than a foot taller than I am. Being at eye-level with someone can feel important, but it’s not that important.

And we’ve gotten compliments for being such a striking couple due our height difference. (Should we thank John and Yoko for blazing the trail?) But as said before, when we tell our loved ones what exquisite hair or adorable hands or gorgeous eyes they have, it’s more a display of affection than a statement of what we require to be intrigued. When we tell someone, “You are so beautiful,” and we mean it, it’s a testament to the sum of their parts.  To the entrancing union of their perfections and imperfections. Height is what you make of it.

I generally find a preoccupation with height amusing. When my father-in-law, who is from the Black Forest, married my mother-in-law, who was from Stockholm, they had their wedding photos shot only in close-up, so that you can’t tell that he was standing on a box.

When I was undergoing my first limb-lengthening procedure at age 11, I explained to one of my teachers, “I’ll never be super-model tall. The muscles tighten up when you stretch them and that’s why there is a limit to how far you can lengthen your legs.”

“Well, that’s actually good for you as a girl,” she said.

“Why?” I asked.

“Well, you wouldn’t ever want to be too tall and end up walking alongside a man who’s shorter than you!”

I looked at her quizzically and then smirked to myself. Sure. That was my first concern about undergoing limb-lengthening.

Eighteen years later, as I prepared my wedding, I came across a discussion on a forum for brides-to-be about the ubiquity of complaints about heels that were too high.

“Why am I hearing so many comments about not wanting to be taller than your husbands?” the main commenter wrote. “I mean, seriously? This is the 21st century. We’re all liberated about LGBT rights and feminism and healthy body image and equality, but we’re still convinced it’s unfeminine for a woman to be taller than her husband?”

Nine out of ten of the replies all said, “Well, I don’t want to look like some freak.”

This week, HuffPost Live features an interview in which dwarf reality TV star Ben Klein reveals his past struggles with depression and suicidal thoughts due to social isolation and bullying. Earlier today on Germany’s ZDF Sundays morning news show, opera singer Doris Michel revealed that no man has ever been able to get over her dwarfism and see her as a romantic partner.

It’s easy to shake our heads and feel sorry for these individuals, and then to be inspired by the courage they have demonstrated in overcoming such hardship. We praise them for raising their children to be self-confident enough to face adversity. But when the adversity is inflicted by our society’s lingering attachment to something as silly as height, it is crucial that we own up to our collective responsibility for it.

We have to ask ourselves, Is my daughter the type to trash other girls’ bodies? Does she look up to women who do? Would my best friend snicker at dwarf-tossing? Would the guys I hang out with shout at a dwarf in the street? Would I be brave enough to call them out on it? Have I ever accused someone of having a Napoleon Complex? What do I think of when I think of a freak?

Surely if Klein and Michel can overcome bullying and denigration, we can overcome any hang-ups we have about size.  And in the nature vs. nurture debate, we gotta stop saying “nurture” and start saying “culture” because it takes more than one set of parents to change the world.



What Makes A Story “Depressing”?

24 May

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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



Ireland Votes on Marriage Equality – While Snarking about Midgets

17 May


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


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

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

“What, love?” she asks, confused.

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

“What you got against midgets?” she demands.

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

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

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

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

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

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

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

He smiles, rolls his eyes and nods knowingly.

They both start to laugh.

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

Rory rolls his eyes and shakes his head.

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

“Mammy!” Rory scolds.


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

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

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

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

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

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

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

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

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

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

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




The Rules For A Photo Shoot

10 May

Photo Shoot ©Ines Barwig(Image ©Ines Barwig)


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

― Zadie Smith, On Beauty


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

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

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

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

I couldn’t hold back my laughter.

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

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

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

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

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

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

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

“Well, you know …”

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

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

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

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

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

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

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

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

A kind, charismatic photographer.

People who make you laugh.

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

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

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

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

“Yeah, I’ve stopped doing that.”


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

I smiled. “Ya think?



Baltimore Is Everyone’s Problem

3 May

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


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

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

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




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