Tag Archives: Lookism

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

19 Mar

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

 

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

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

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

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

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

 

 

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.
 
 
 

 

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

9 Oct

  

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

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

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

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

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

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

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

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

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

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

“Thanks for your honesty,” Tom nods.

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

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

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

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

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

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

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

 

 

On Teaching Kids (and Ourselves) Not To Assume

24 Apr

Televisión escolar(Image by Antonio Jose Fernandez used under CC 2.0 via)

 

I was about to help a 5-year-old remove her tricycle helmet when we were cut off by a man staggering slowly down the street. Unnerved by his sudden presence and unusual gait, she stepped back and did a double-take. She stared at him and then turned to me. “He walks strange.”

I smiled but waited a few more beats until he seemed to be out of earshot. In the meantime, I wondered what to say to her. The adult/cynic in me was responsible for my gut feeling that he must be struggling with drugs or alcohol.

But then I considered how useful gut feelings really are in such situations. Annette Funicello complained of being accused of drunkenness when she was struggling with the early stages of multiple sclerosis. I have had enough questions about my sway back and achondroplastic gait to the point where I can only guess how many people aren’t bothering to ask me and simply making their own silent assumptions.

And while some have claimed gossip can be beneficial, it is so often responsible for misinformation and arrogance – the bedrock of ableism.

“He might be sick,” I said to her. “But we don’t know. He hasn’t told us. Sometimes when you’re sick your legs don’t work right. Do you remember when I had a brace on my leg last year?”

She nodded, and then peered once more down the street at him. “I think it’s ‘cuz he’s old! He has a gray beard and lots of old people have gray beards…”

 “Some do!  Like Santa Claus, right?”

 She nodded.

 “And my dad has a gray beard and lots of people call him Santa Claus!”

 She laughed.

 “But [my husband] has little gray whiskers, too, and he’s not really old yet, is he?”

 “No… ”

 “Does your daddy have little gray whiskers, too?”

 “One or two… ”

 “Yeah. Do they scratch when he gives you a kiss?”

 “Yup!”

Neither she nor I will ever be fully liberated from the temptation to silently classify many of the strangers we encounter throughout our lives. But the idea that we can remind ourselves that we ultimately cannot know for sure, and that such conversations need not be engulfed in tones of complacency or pity is an idea worth considering. 

 

 

And If Someone Thinks You’re Plus-Size, Then What?

10 Apr

Untitled(Image by Daniela Goulart used under CC license 2.0 via)

 

The tiff between comedienne Amy Schumer and Glamour magazine this week has reached the media coverage level of Big Deal. In an issue featuring plus-size models on its cover, Glamour listed Schumer under “Inspiring Women We Admire” alongside Melissa McCarthy and Adele. Schumer took to Twitter to complain:

I think there’s nothing wrong with being plus size. Beautiful healthy women. Plus size is considered size 16 in America. I go between a size 6 and an 8. @glamourmag put me in their plus size only issue without asking or letting me know and it doesn’t feel right to me. Young girls seeing my body type thinking that is plus size? What are your thoughts? Mine are not cool glamour not glamourous.

The Glamour editors apologized for hurt feelings, while emphasizing their respect for Schumer and that they didn’t actually mean to suggest she is plus-size.

The public has divided in two, with Schumer’s supporters claiming she has helped to question not only the definition but the very idea of “plus-size.” After all, as the children’s book You Are (Not) Small shows, size is relative. “Plus size” is, to be sure, an utterly made-up idea, necessary to absolutely no one on earth.

The other faction has criticized Schumer’s seemingly contradictory praise for plus-size models in the same breath that she insists she doesn’t belong with them. While I am not interested coming to any conclusions about Amy Schumer’s true personality and values, her actions thusfar represent an all too common problem in the body positive movement. The problem leaves women who larger than a size 6 or 8 to fend for themselves not only against the hideousness of lookism in general, but against the implication that their smaller sisters are all quietly consoling themselves with the mantra, “At least I don’t look like that!

Spend decades working to pick apart body image and lookism, and you’ve heard this all before. A woman—usually a woman—is an out and proud feminist, ready to rar about restrictive beauty standards while cracking jokes about her curves, but she cannot and will not stand anything less than compliments on her looks from others. In some cases, she goes fishing for compliments as much if not more than your average beauty pageant queen:

“I’m not short!”

“He called me ‘Ma’am!’ I’m not old!”

“The test rated me as obese. I’m not obese! Obese is…”

Instead of questioning what’s wrong with being old, she rages against the implication that she is. Instead of questioning what exactly would be so wrong with strangers not liking her looks, she argues that they would in a just world.

The reason so many of us end up doing this is because we like to be thought of as confident, yet we behave based on fear. We fear being called ugly, we fear not having broad appeal, and we do nothing to confront those fears. We talk openly about them. And stop there. And in doing so, we spread them.

We don’t face up to the fact that “winning” the beauty pageant game by having fashionable looks is no guarantee of lasting love or happiness. Instead, we keep on envying the winners and ever so quietly echoing the Mean Girls we met in high school: It is very important that most people think you are attractive. Beauty contests matter. Hierarchies matter, at least a little. No one wants to be last. You need someone to look down on in order to build yourself up. That’s natural. It’s a mess of a message to women and men, young and old alike. And it helps no one.

Sometimes it helps to switch from the high school mindset to an even less mature one. Spend a lot of time around pre-school children, and you know you can’t control what they notice:

“I think you’re pregnant!”

“Your skin’s all wrinkly!”

“Why are you so short?”

“Why do you walk so funny?”

“This hair is gray!”

“What’s that stripe on your arm?”

“What are those dots on your face?”

“Twenty-two is old!”

Pre-school teachers will fail—let alone make it through their first week— if they let such comments get to them. The best response, of course, is to engage the child and together examine the bodily feature they want to understand. If you don’t have the energy for a teaching moment, however, you simply shrug it off. Or say, “I am short/scarred/disabled because that’s just how my body looks. I like it that way.”

And if you want them to believe that—or anyone to believe that—then it helps if you believe it, too.

 

 

What Should You Do When a U.K. Night Club Offers Guests a “Free Midget” for Its Easter Special?

3 Apr

las_meninas_01

(“Las Meninas” by Diego Velásquez via)

 

There are undoubtedly those who find the idea of a night club offering its VIP-members a “free midget” for the evening hilarious. (It’s just so novel, ain’t it?) And there are certainly those who find the idea offensive. (“That was offensive,” comedienne Joanna Hausmann points out, is the third most-uttered phrase in America.)

And then there are those of us who know that the idea is not original. Far from it. It is at least 2,000 years old. Records show people with dwarfism were purchased as slaves in Ancient Rome and China up through the Renaissance. In bondage for their entertainment value, they were made to dance like monkeys and sometimes kept in cages.

From the Early Modern Era on into the 18th century—and, in some parts of the world, the late 20th century—they remained ubiquitous as lifelong servants and entertainers to aristocrats and dictators. Whether such servitude constituted slavery is difficult to ascertain. There is no evidence to suggest dwarfs were relegated by law to slave status at birth like other minorities were, perhaps because dwarf entertainers and servants were a frivolity for monarchs rather than a source of cheap labor for major industries. Records predating the 20th century reveal a handful of people with dwarfism lived independent lives. But, like the freak shows of the circus, servitude was often dwarfs’ best hope for sustenance in a world where families often abandoned them as children.

Dwarf advocacy organizations have condemned the Manchester night club’s offer as “discriminatory.” But rather than entangle ourselves in another battle between the that’s-so-offensive crowd and the hey-lighten-up crowd, I would prefer to ask both sides if they are aware of the history of servitude and enslavement. And if, as I suspect, most are not aware of it, it is necessary to consider why.

 

 

Art That Explores Dwarfism with Uniforms & Anti-Selfies

20 Mar

Laura Swanson(Image ©Laura Swanson, used with permission)
 
Laura Swanson is a rising artist on the New York scene. Born with achondroplasia, her work zeroes in on bodily difference and human perception. Her latest show, “Resistance,” opened recently at the JCC in Manhattan. The first part of the exhibit features uniforms and cultural apparel—that of a beekeeper, a welder, a plague doctor—altered to her size.

“I started thinking about if you see a person of average adult height wearing a uniform they wouldn’t judge or question…,” she told DNAinfo.  “[However,] when something is made smaller in scale, does it change the meaning?”

The second part of the exhibit features what Swanson calls “anti-selfies”: portraits in which her face is obscured. Does this draw attention to her extraordinary body? Or would the average viewer’s attention already be distracted by it?

In an interview at the Center for Art and Thought, she explained:

Anti-Self-Portraits examines longing for agency and privacy. I wanted to depict a naïve, comic desperation: that this person is so tired of being looked at, she is grabbing whatever is close to camouflage her body, but not doing a very good job at it, kind of like an ostrich sticking its head in the sand. At the same time, I wanted the photos to have a paradoxical feel. With the frontal, theatrical staging of the body, I wanted to convey that this person might not be such a desperate person, but actually a knowing person who is in control of how she is seen. 

A previous show, titled “Display,” featured an average-sized coat next to one that would fit the body of someone with achondroplasia. Here again Swanson invited her viewers to consider what exactly they were staring at. And why. Is an average-sized coat utilitarian, but a dwarf’s coat something you would pay to look at? Freak show attendees certainly did—and continue to do—throughout time and around the world.

Another planned project would explore notions of privacy. She described it in an interview at Haverford College in 2013:

My acute awareness of this desire stems not only from personal experience, but also from the history of photography, which is riddled with images of the Other…

I am working on a multi-part project that deals with an issue that is becoming increasingly unavoidable – the experience of having unwanted photographs taken of me and other people with physical differences while we go about our lives in public. It is funny because there is a lot of coverage and creative projects being made about government surveillance due to the recent PRISM/NSA spying controversy, but my project is actually looking at the ways ‘citizens’ use their phones to document others (ranging from people with physical differences and disabilities to depictions of homelessness) and share those photos on social media to amuse their friends. One part of the project will be … to design and fabricate devices for those who want to avoid having their image taken in public without consent. So not only am I getting further away from the camera, I am trying to prevent its usage!

As a professional photographer and sculptor, Swanson is thrusting tough questions upon the art world – a community renowned for having both broad and narrow definitions of beauty. As a person with dwarfism in the public eye, she is elevating the social issues of disability and physical difference to a more contemplative plane. That these issues tend to come in packaging that is either simplistically cute-and-cuddly or outright freak-show voyeuristic makes Swanson’s approach all the more refreshing.

 

 

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.

 

 

 

 

This Is How You React When Someone Finds Your Stupid Little Joke Offensive (And You Know They Might Be Right)

1 Nov

From the Archives

 

Really, With the Gay Jokes?” “The Rape-Joke Double Standard.” “Has The Onion Gotten Too Mean?” These are the headlines to just a few of the several articles appearing this week about comedians and conscience. All of them make excellent points, but the problem with trying to explain why a joke is offensive is that it instantly kills the mood. Culture critics aren’t professional comedians and thus they almost always end up being viewed as the more uptight of the two, even if their arguments are rock-solid.

And yet, the best comedians are pretty good culture critics, as Dara Ó Briain proved years ago at the Theatre Royal in London. Amidst his cracks about the idiots who ask you to remove your shoes in their home, the idiots who confuse astronomy and astrology, and the idiots who think the IRA had uniforms, he talked about a time when he was the idiot:

Last year I told a joke, and this is not a good joke, I have no excuses.  It is a terrible joke, but it was about the musical Billy Elliot. And “What was the composer’s inspiration for Billy Elliot? Elton John – do you think he saw a little of himself in Billy Elliot?”

I know. It was rubbish. I didn’t mean it as an attack on Elton John, or as an attack on the gay community. I meant it as another joke in the glorious tradition of jokes involving the word “in.” As in, “Do you have any Irish in ye? Would you like some?”

Okay, so he explained he didn’t intend to trash homosexuality. But he didn’t leave it at that. He went on to talk about the backlash from the LGBT rights alliance Outrage, who said the joke contributed to a culture of hatred against gay men in Britain. Ó Briain explained:

And the thing is, your initial reaction is when somebody does a complaint like that is to get all tough and say, “It’s only a joke, for Jesus’s sake, relax.” Swiftly followed by arguments about civil rights and comedy’s obligation to say the difficult thing and freedom of speech. Which is a fairly lofty point to bring in to back up something as bad as that joke about Billy Elliot. You wouldn’t go to Strasbourg to the European Court of Human Rights with that as your argument: “Oh, my lords and ladies of the court, Elton John? Do you think he saw a little of himself in Billy Elliot?”

He went on to clarify his political stance, emphasizing that “there is no pedophilia-homosexuality relationship at all,” showing he was brave enough to break character as a comedian despite the risk that always carries of losing the audience. He then addressed that risk as well:

And some people think it’s very politically correct of me, but then, I’m Irish. And if anyone’s benefited from a good dose of political correctness on this island, it’s the Irish. Remember the good old days with all those jokes about how stupid we were? And then a memo went around some time in the Eighties, when you [Brits] all said, “Oh, Jesus, we’re not doing jokes about the Irish anymore? Okay, fine.” And it just stopped. And thank you very much. A bit overdue, but thanks very much nonetheless.

He went on to tell a joke about a bunch of drunk Irishmen, reveling in the fact that he was allowed to tell it and the British weren’t. He then said, “But again with the whole Billy Elliot thing, the reason I backed down so fast on that was because I received one letter of support.” Removing the letter from his pocket, he proceeded to read the message sent by a group of conservatives in Northern Ireland who applauded him for taking a stand against the forces of sodomy. “If you ever use the phrase ‘forces of sodomy,’ it had better be a gay heavy metal band that you’re talkin’ about!”

It’s rare that comedians are brave enough to admit that their joke was a fail. But I’ve never heard a comedian own up to it so fiercely and admit the ways in which he’s personally benefited from the political correctness movement. By changing his target from the group he originally attacked to himself, Ó Briain proved not only the sincerity of his regret but the breadth of his comedic skill.

And I’ve said it once and I’ll say it again: Whenever comedians insist that any criticism of their work is an indictment of all comedy, it sets the bar for comedy so low that no comedian need ever try to be original. Ignoring the “PC police”—i.e., anyone who doesn’t live with the privileges they do—they can simply regenerate old stereotypes, mining the minstrel shows, the frat houses and the school yards, and if no one laughs at this, it’s simply because we’re all too uptight, right? Wrong. We don’t refrain from laughing because we feel we shouldn’t. We refrain because, unlike the repressed who giggle away in awe, we’ve heard it a thousand times before and we know it’s far from unique. And isn’t unique what every comedian, entertainer and artist strives to be?

Or, in the words of another Irish comic, Ed Byrne: “I see comedians making jokes about fat people being lazy, and I just think, well, they’re not as lazy as comedians who get easy laughs by picking on fat people.”

 

Originally posted May 12, 2013

Curiosity Kills the Rat

19 Oct

From the Archives

 

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

— Michael Franti

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

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

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

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

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

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

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

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

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

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

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

 

 

Originally posted May 19, 2012

Who Should Think You’re Beautiful?

11 Oct

Goodnight(Image by Aphrodite used under CC 2.0 via)

From the Archives

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

Originally posted September 15, 2013

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.

 

 

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.

 

 

Interview on Berlin Television

6 Jun

©Ines Barwig(Image ©Ines Barwig)

 

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

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

 

GoogleTranslate

 
 

The Rules For A Photo Shoot

10 May

Photo Shoot ©Ines Barwig(Image ©Ines Barwig)

 

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

― Zadie Smith, On Beauty

 

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

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

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

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

I couldn’t hold back my laughter.

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

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

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

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

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

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

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

“Well, you know …”

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

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

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

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

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

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

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

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

A kind, charismatic photographer.

People who make you laugh.

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

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

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

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

“Yeah, I’ve stopped doing that.”

“Why?”

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

I smiled. “Ya think?

 

 

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.  

 

 

 

Could FDR Be Elected Today?

26 Oct

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

 

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

His biographer Geoffrey C. Ward explains:

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

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

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

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

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

And here I thought Ann Coulter was a modern phenomenon.

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

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

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

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

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

Street Harassment of Dwarfs: What You Can Do

14 Sep

 

If you haven’t caught it already, Jonathan Novick’s video documenting his experiences in public as a person with achondroplasia is worth your time. Having grown up in a small town where almost everyone knew his backstory, Novick’s move to New York City was a rude awakening to the problem of street harassment. A day out and about, recorded by a hidden camera, features strangers shouting at him from afar, “Hey, short stuff!” “What is he?” “Little midget! Big man, big penis!” A few ask him, “Have you ever been on TV?” “Are you on that show with the little people?” “Can I take your picture?” Two people walk by while photographing him, without asking for permission.

Although I did not undergo limb-lengthening to blend in (more on that here), it has undeniably spared me a lot of this unpleasant commentary which so many dwarfs endure, and which I used to endure as a child. Writing from the U.K., Eugene Grant’s blog demonstrated last year that Novick’s tales of being incessantly photographed and called “Big man!” are far from rare. On Tumblr a college student reported this incident last September:

Walking home from coffee, a random car driving by yelled, “Slut” out their window. I’m not sure who it was directed toward. I was technically showing more skin than the other two in our party, but I also am the height of a 9 year-old and from a distance in the dark it’s hard to determine my age.

Either way assholes are assholes.

This is what sociologist Lisa Wade has called the burden of not being able to assume it’s not about you. This is a burden most people who are visible minorities carry with them. In a review of a street photography project by an artist regularly harassed for being fat, Wade explains:

The truth is that [she] often does not know what’s going on in the minds of her subjects. Yet, because she carries a body that she knows is disdained by many, it is perfectly reasonable for her to feel like every grimace, look of disgust, laugh, shared whisper, and instance of teasing is a negative reaction to her body. In fact, this is how many fat people experience being in public; whether they’re right about the intent 100% of the time is irrelevant to their lived experience.

And this is how people of color, people who speak English as a second language, disabled people and others who are marginalized live, too. Was that person rude because I speak with an accent? Did that person say there was no vacancies in the apartment because I’m black? Was I not chosen for the job because I’m in a wheelchair? Privilege is being able to assume that the person laughing behind you is laughing at something or someone else, that the scowl on someone’s face is because they’re having a bad day, and that there must have been a better qualified candidate.

While I’ve had my fair share of strangers asking about my scars, hands, and gait, they usually have to be particularly nosy in order to take notice of these features in the first place. This happens to me a lot more often in certain rural areas than in the urban setting I call home.

This is why the small town vs. big city debate isn’t quite as simple as Novick presents in his film. I understand the idea that extraordinary-looking people can benefit from living in a close-knit community, where most are already aware of your condition and don’t need you to explain it to them. Conjoined twins Abby and Brittany Hensel’s parents have also claimed their daughters benefited from this. But plenty of people who belong to minorities can attest that small towns do not always embrace diversity in their community. And while there are tremendous advantages to an atmosphere where people are outgoing and unrepressed, there is a fine line between friendliness and nosiness: In places where everyone knows everyone’s business, the assumption that everyone has the right to find out what they don’t know about you can be pervasive. In the choice between small town gossip versus big city street harassment, I’d choose neither.

In my experience, what matters is not the size of the place but the culture. Cities do not have to be hostile environments of street harassment, and villages do not have to be breeding grounds for judgmental hearsay. As Novick says, “I’ll ask that the next time you see someone who is different from you, think about their day. Think about what their day might be like… And then think about what part of their day you want to be.”

 

 

 

 

Would You Give Up A Disabled Baby, And If So, Why?

10 Aug

Youri(Image by Naoya Fujii used under CC 2.0 via)

 

Tonight 60 Minutes will feature the very first interview with the Australian couple that has attracted international scorn ever since the Thai woman they hired to be their surrogate mother publicly accused them of adopting one of the twins she gave birth to while refusing Baby Gammy, the one with Down Syndrome. Hiring a surrogate mother who lives abroad is both legal and unregulated in Australia, with none of the criminal background checks or counseling that are required for domestic surrogacy arrangements.

The Digital Age has seen the rise of prospective parents independently seeking out surrogate mothers online without any oversight, as well as a rise in “re-homing,” wherein adoptive parents join Facebook or Yahoo groups to seek out new parents for a child they’ve decided is harder to handle than they had thought. A disturbing Reuters report last fall profiled a couple who handed over an unhealthy girl they had adopted from Liberia to a new family they had found online, only to later discover that the new parents were known sex offenders.

Yet while black market adoption may be on the rise thanks to the Internet, the history of people rejecting only certain kinds of children is depressingly long. Only 2% of all babies born are disabled, yet half of the children up for adoption in the United States are disabled. Half of them are also black. Chad Goller-Sojourner told NPR this year that prior to his adoption by a white family, he was passed over by more than one black couple for being “too dark.”

I am deeply grateful that my parents did not put me up for adoption, like so many parents of dwarfs before them. Being rejected by your own parents for your difference feels like a rejection of your very life. But I will not start chanting that parents should never ever give up their children until we admit that not everyone is capable of being the sort of parent certain children need. The skills required for accepting your child’s skin color or body shape are not the same skills required for accepting a lifetime of waiver agreements about the deadly risks of invasive surgery. In the real world, some marriages do break down and some parents do become abusive and some parents do murder their half-grown children when they try and fail to cope with their child’s disability. I know a good number of people who are great at working independently but terrible at caregiving. In Far From the Tree, Andrew Solomon profiles a British woman who eventually relinquished custody of her severely disabled daughter to a foster mother, telling the NHS, “I’m not the right mother for this child.” Such honest humility requires some degree of bravery and, as Solomon points out, honors the skills of the foster mother and all parents who keep their commitments to disabled children.

Do some parents give up too easily? Absolutely. But are some children better off far away from their parents? Evidently. Because no two parents are alike, what is best for the child is best decided on a case-by-case basis. The Australian case sounds dreadful, but I’m withholding judgment until the parents have had their say. And as long as there is reproduction, there will always be parents who put their children up for adoption or terminate pregnancies, and society must thus ensure that the means for doing so are absolutely safe and heavily regulated.

But we cannot deny that too many parents end up failing to support certain kinds of children because the society they live in fails to support such kinds of people. Parents can usually see through the B.S. of those who urge them to stand by their kids no matter what and who also regularly make disparaging remarks about scars, fat, or dark skin, and openly wince at the idea of looking like a freak, a wimp, or a pussy. We won’t ever lower the disturbing number of prospective parents who would reject a child with an extra finger or toe until we as a society confront what would cause a parent to think that having an extra finger or toe is too horrific to endure.

During a discussion in college about the individual’s right to make their own medical decisions, I was shocked to hear a bunch of my friends insist that they would rather die than lose the ability to walk. Is it possible to attach such extreme shame to a hypothetical situation for yourself without attaching shame to the situation of others who live that way every day?

When I told one of my fiftysomething mentors about how upset I was by the incident, she smiled and said, “Well, that’s something young people are certainly more likely to say than anyone else.”

A fortysomething friend piped up, “Yeah, that is a very young person thing to say. I swore when I was young that I’d shoot myself if I ever went bald and yet here we are!”

Indeed, while the strains of physical pain and special accommodations and repeated doctor’s appointments are very real, perfection is not. And no matter how far technology advances, the belief that we can guarantee ourselves “normal” children is delusional. After all, unlike Baby Gammy and I, 85% of all disabled people were not born disabled. That’s something to bear in mind when heading to the obstetrician’s or the adoption agency.  

 

 

Who Needs To Look At Dwarfs In A Theme Park?

5 May

Caged Beauty #1

(Image by Howard Ignatius used under CC 2.0 via)

 

Belgian photographer Sanne De Wilde’s journey into the Kingdom of the Little People in Kunming, China is featured this week at Slate’s photo blog. “For me, it’s about how this kind of place can exist,” she told Slate. “What does it tell you about a person who starts this and creates it? What are his intentions?”

She goes on to explain that one of the hardest things to capture on film was the overwhelming boredom among the performers. “A lot of time the people are just hanging around in their room or on their beds lying around,” she said. 

That circus freaks get bored should not be too surprising, but it is still often radical today to consider that people categorized as freaks can in fact be boring. (More on that next week.)

A theme park funneling in people who pay to look at dwarfs and the state of disability rights in China are worth a zillion words each. But for now, De Wilde’s photos alone have plenty to say on the matter. The feature is definitely worth your time, and to those who do check it out, I leave one question open to you:

Does Slate’s reporting on the exploitation of dwarfs in freak shows now make up for its past SNAFUs?