Tag Archives: Beauty

How Much Does Height Matter To You?

19 Feb

Mann und Frau
 

As I wrote on Facebook after I saw friends posting them, I really don’t like those #TinyTrump memes. I’m not outraged. I’m just really, really uncomfortable whenever human size is used as an insult or a sight gag. (And yes, I have had friends and admire several human rights activists who are almost as short as Trump appears in those memes.) Being physically small isn’t hilarious or humiliating. It just is.

200 years after Napoleon, political discourse is still rife with the insidious concept of small man syndrome. Male acquaintances still report conversations coming to a screeching halt on Tinder after they answer an interested woman’s inquiry after their height. So here is an old, popular post on the subject that is just as apt as it was when I first published it:

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 moments when guys have gotten on their knees to dance with 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.
 
 
 

 

Who’s Your Family?

27 Nov

Lady with Punk Grandson II(Image by Christ_i_ane used under CC 2.o via)

From the Archives

 “We don’t have to like each other, Jo. We’re family.”

— Holly Hunter in Home for the Holidays

Whenever you set out to talk about minority rights, you end up crashing into the issue of identity. And this invariably swerves, again and again, into the issue of family. The poet Sharon Olds once said, “A family is a mystery,” and this is probably why I can’t get enough of it in novels, film, clinical trials, and yes, even in real life. Show me someone fascinating and I can’t wait to meet their parents.

In and outside of the holiday season, twenty- and thirtysomethings so often love to extoll the importance of friends over relatives, echoing Oscar Wilde: “Friends are God’s apology for family.” Our first true friendships usually begin in adolescence—the time when we start wanting to forge our identities independently from our families—and this sets the standard whereby friends are seen as a respite from all of our obligations: from parents and siblings, from school, from work, from the exhaustion of the holidays spent with the relatives. “My family drives me nuts, my friends get me,” pop culture says. “Sure I love my family, but I actually like my friends.”

And yet, friendships ultimately prove to be fleeting with age, as life partners and earning money and having children begin to take priority. A study at Oxford University found that taking on a romantic partner generally pushes two close friends out of your life. A serious boyfriend or girlfriend is, after all, a super-close friend and there are only so many hours in the day to fit people in. It seems entirely reasonable to conclude that the addition of in-laws and children require us to quietly toss a few more buddies overboard. Or at least scratch them off the gift list.

Few of us like to face the harsh truth that the number one facilitator of friendship is convenience. How many people have we doused in superlative praise, spilled our hearts to, bragged with about our never-ending awesomeness, only to eventually lose touch because we live too far away, we’ve changed our habits since that new job/baby/boyfriend, we haven’t spoken in so long and wouldn’t know what to say? Sure, we’ll fling them a Facebook birthday greeting, but composing an entire email would require so much apologizing for having taken this long to write…

Maintaining a friendship requires effort, as author Julie Klam said in an interview with Linda Holmes on NPR two years ago:

She realized, too, that it wasn’t an area that was being written about very much in a way that spoke to her experiences. She found a lot of clichés, but not a lot of insight. “Everything that I had read about friendships was always … platitudes about, you know, ‘friends are like flowers and you have to water them’ or whatever. Or the T-shirts with the koala bear and the flower and the ‘Friends are…’.”

So… Why is there so much writing about so many aspects of our lives — love, sex, money, family, careers — and so little about the inner workings of friendships that are so central to so many people’s lives? Maybe, Klam theorizes, it’s because friendships seem disposable and interchangeable when you look at them like an efficiency expert. “There’s some sort of thing about, like, ‘Well, if you don’t like the friend, just don’t be friends with them.’ Rather than the idea of working things out.” Working things out, as you know if you read other kinds of relationship books, is the usual ideal outcome, rather than bolting when trouble strikes.

… And of course, that’s what makes keeping up with your friends complicated. When I ask her what she considers the big challenge of adult friendships, she emphasizes that it’s legitimately hard to make time for them, because they’re not, you know, mandatory. And the older you get, the more things in your life are mandatory.

Perhaps this is why there is such a paucity of stories about friendship in books and film. A friendship can be destroyed without any drama. All the characters have to do is lose touch.

And that can be fine. Many friendships are simply not worth laboring over. Time changes every one of us and there is little point in forcing ourselves to pretend to be someone we are not simply for the sake of sustaining the appearance of something that no longer serves us. Scores of people can be your perfect match in a single context: that course you took together, that team you both played on, that year you roomed together when a deep heart-to-heart required nothing more than walking down the hall and flopping onto the bed with a beer. (Or maybe there was more convenience in those years before you roomed together and had no idea how much/little time/money s/he spends on cleaning/personal hygiene/video games.)

A friendship is significant if it can survive all the changes and challenges life will inevitably throw at it. But the same goes for family, to the extent that I believe there is really no difference between the two. As Andrew Solomon wrote in what I still consider the Best Book of the 21st Century, “Love becomes more acute when it requires exertion.” The exertion can be exquisite.

Family can be fun to be with, but what they offer with far more consistency is purpose. This is why studies find that parents are often happier watching television than spending time with their children, but it’s their children—not television—that inspire them to endure when they are faced with pain or hardship.

Many traditional beliefs about family are not helpful. If you’ve explored this blog at all, you know I believe bloodlines are dangerously overrated. I also believe it can be damaging to expound upon the virtues of lifelong commitment and forgiveness without exception. While many people abandon others all too easily because they are more concerned with their own comfort than anyone else’s, just as many people remain in emotionally abusive relationships because their generosity trumps their self-care. I have sadly witnessed enough toxic relationships to know that some ties are better off severed.

This is why I define family not by genetics, but as the people you are so close to that they regularly drive you crazy – while still being worth the grief. They are the people who know you so well that it embarrasses you to think about. They can simultaneously be uncles, cousins, godmothers, half-brothers, former coworkers or classmates. But no matter their origin, once it’s clear to me that I will always stick by someone no matter how vexing they can be, they are family to me.

Because if novels and films and social psychology tell us anything, it’s that you can’t get truly close to another human being without being annoyed by them.

 

Originally published December 2014

Disability & the Politics of Shoe-Shopping

16 Oct

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

 

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

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

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

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

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

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

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

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

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

 

 

Sometimes Beauty Is Easily Recognizable

24 Jan

Fashion Shoes...(Image by Thomas Leuthard used under CC 2.0 via)

 

Sometimes beauty is easily recognizable. Sometimes it’s not. Sometimes fashion is a statement. Sometimes it’s not. Sometimes street photography is a burden for those whose bodies are more likely to be photographed than others’.

Feel free to share your ideas about this, in or outside of the context of the above photograph by Thomas Leuthard.

 

 

 

 

Body Dysmorphia & the Dangers of Operating Out of Insecurity

29 Nov

Reid reading(Image by Miguel Tejada-Flores used under CC 2.0 via)
 
At the beginning of Mean Girls, Lindsay Lohan’s character watches her new high school friends indulge in body-bashing in front of a bedroom mirror:

“God, my hips are huge!”

“Oh, please. I hate my calves!”

“At least you guys can wear halters. I’ve got man-shoulders.”

“My hairline is so weird.”

“My pores are huge!”

“I used to think there was just fat and skinny,” Lohan thinks to herself. “Apparently there’s a lot of things that can be wrong with your body,”

While most women in the Western world are well-acquainted with this mentality, such self-hatred also occurs in men, albeit more covertly. Body dysmorphic disorder affects between 1% to 2% of the population and is distributed equally among men and women. And if they have the means to pursue cosmetic surgery, they can become addicted to it.

In an article appearing at The Huffington Post last week, 27-year-old Reid Ewing (pictured above), who plays a run-of-the-mill hunk on Modern Family, revealed his seven-year struggle with body dysmorphic disorder and his subsequent addiction to cosmetic surgery. After describing in detail his self-hatred in front of the mirror and his misery after each of the several surgeries, he turns his lens to the doctors who were only too ready to put him under the knife:

Of the four doctors who worked on me, not one had mental health screenings in place for their patients, except for asking if I had a history of depression, which I said I did, and that was that. My history with eating disorders and the cases of obsessive compulsive disorder in my family never came up. None of the doctors suggested I consult a psychologist for what was clearly a psychological issue rather than a cosmetic one or warn me about the potential for addiction.

People with body dysmorphic disorder often become addicted to cosmetic surgery. Gambling with your looks, paired with all the pain meds doctors load you up on, make it a highly addictive experience. It’s a problem that is rarely taken seriously because of the public shaming of those who have had work done. The secrecy that surrounds cosmetic surgery keeps the unethical work practiced by many of these doctors from ever coming to light. I think people often choose cosmetic surgery in order to be accepted, but it usually leaves them feeling even more like an outsider. We don’t hear enough stories about cosmetic surgery from this perspective.

Not long after I had decided to stop getting surgeries, I saw the first doctor I met with on a talk show and then in a magazine article, giving tips on getting cosmetic surgery. Well, this is written to counter his influence. Before seeking to change your face, you should question whether it is your mind that needs fixing.

Plastic surgery is not always a bad thing. It often helps people who actually need it for serious cases, but it’s a horrible hobby, and it will eat away at you until you have lost all self-esteem and joy. I wish I could go back and undo all the surgeries. Now I can see that I was fine to begin with and didn’t need the surgeries after all.

I have written extensively about my decision to undergo six years of limb-lengthening. In the many, many conversations I have had with people in person, on panels and in print about this decision, I have emphasized that it was not for cosmetic purposes and that anyone who would do it to counteract feelings of bodily inferiority should refrain. Ewing’s stories of screaming at his scars and feeling anything but satisfied with himself are precisely why.

And for the majority of people who are not at risk for such all-encompassing self-destruction, it is still worth asking ourselves as a culture if the aforementioned tradition of bonding through body-bashing brings us any self-esteem or joy.

 

 

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

 

 

The Rules For A Photo Shoot

10 May

Photo Shoot ©Ines Barwig(Image ©Ines Barwig)

 

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

― Zadie Smith, On Beauty

 

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

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

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

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

I couldn’t hold back my laughter.

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

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

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

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

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

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

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

“Well, you know …”

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

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

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

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

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

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

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

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

A kind, charismatic photographer.

People who make you laugh.

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

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

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

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

“Yeah, I’ve stopped doing that.”

“Why?”

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

I smiled. “Ya think?

 

 

Will We Live To See The End of Dwarfism?

29 Mar

Hands

 

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

* * *

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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