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

19 Apr

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

 

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

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

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

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

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

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

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

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

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

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

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

 

 

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When It Comes To Health, Who Should Minorities Trust?

12 Apr

Medication diet squircle(Image by Barry used under CC.20 via)

 

At the beginning of this year, I underwent orthopedic surgery and rare complications immediately arose from it, causing me to take three months of sick leave. In that time, both my country of origin and my country of residence experienced outbreaks of measles that have set the Internet ablaze with raging arguments about medicine, personal choice and the greater good. While the critics of Big Pharma have plenty of good points, recent studies of Big Herba—which is unregulated in the U.S.—have debunked an array of flaws that can be deadly. Glossing over the vitriol, at the crux of the matter lies a very reasonable question: When it comes to health, who should you trust?

“Trust to your doctor” sounds simple enough until we consider the many instances throughout history when medical professionals have abused this trust, particularly in regard to minorities. Health organizations around the world classified gay people as mentally ill as late as 2001. A panelist on Larry Wilmore’s The Nightly Show last month cited the Tuskegee syphilis experiment, which treated African-American men like lab rates from 1932 to 1972, as the basis for his overarching distrust of government health organizations. Investigations recently revealed that the U.S. Public Health Service committed similar crimes against mental patients and inmates in Guatemala in the 1940s. The polio vaccine, which has saved millions of lives globally, was first tested on physically and mentally disabled children living in asylums and orphanages. Researchers advocated the forced sterilization of trans people and ethnic minorities as recently as 2012. And of course there were the Nazis and the many, many scientists before them who passionately promoted eugenics. ITV recently rebroadcast a documentary hosted by Warwick Davis detailing Dr. Mengele’s horrific experiments on dwarfs at Auschwitz.

In other words, minorities don’t have to dig too deep to come up with plenty of reasons to be wary of scientists and doctors. Regulation, transparency and a never-ending, highly public debate on bio-ethics and human rights are necessary to prevent such crimes from happening again.

But an ideological opposition to all doctors based on such abuses ignores the myriad successes. A Slate article appearing last fall, “Why Are You Not Dead Yet?” catalogs the thousands of reasons so many of us are living so much longer than our ancestors did—from appendectomies to EpiPens to everyday medications—which we so often overlook because we have come to take the enormous medical advances of the past 200 years for granted.

And yet, as so many scientists are only too ready to admit, science does not know everything. Almost no medical procedure can be guaranteed to be risk-free, and many people base their distrust of doctors on this fact. My current post-surgical complications were just cited to me by an acquaintance as reason enough for why I never should have had the operation at all and instead gone to a TCM healer.  

In my 33 years I have undergone 14 surgeries, physical therapy, hydrotherapy, occupational therapy, electro-muscular stimulation therapy, and the list of medications I’ve taken undoubtedly exceeds a hundred. I have also been treated with reiki, shiatsu, osteopathy, acupuncture, massage, prayer, and herbal remedies based on macrobiotic, homeopathic and detox theories. Some of these treatments I chose as an adult, and some of them were chosen for me by adults when I was a child and a teen. Some of the medical treatments worked, some didn’t, and some caused new problems. Some of the alternative treatments rid me of lingering pain, and some were a complete waste of time, money and energy as my condition worsened. I won’t ever advocate any specific treatment on this blog because my readership is undoubtedly diverse and the risk of making inaccurate generalizations is too great.

Indeed, a grave problem in the public debate on health is the frequent failure to acknowledge human diversity. Most health advice found online, in the media, at the gym or a healing center is geared not at minorities but physiotypical people, who are seeking the best way to lower their risk for heart disease, fit into their old jeans, to train for a marathon, or to simply feel better. They are not seeking the best way to be able to walk to the corner or have enough strength to shop for more than half an hour. Those in the health industry who endorse one-size-fits-all solutions—“We just need to jog/Start tai-chi/Eat beans, and all our troubles will go away!”—rarely address minority cases that prove to be the exception to their rule. But atypical bodies have just as much to teach us about our health as typical bodies, and leaving them out of the conversation benefits no one but those seeking to profit off easy answers.

When it comes to seeking treatment for my condition, I follow a simple rubric: I don’t want to be the smartest person in the room. I have no professional training in medicine or anatomy. As this physician explains so well, self-diagnosis is a very dangerous game. Yet I sometimes am the expert on my body thanks to the relative scarcity of people with achondroplasia—there are only 250,000 of us on earth, or 0.00004% of the world population—compounded with the scarcity of people with achondroplasia who have undergone limb-lengthening and sustained bilateral injuries to the anterior tibialis tendons. A visit to a healing center or a hospital often entails conversations like these:

Shiatsu Healer: You’re walking with a sway-back. Your wood energy is obviously misaligned because you are stressed.

Me: My hips sway when I walk because the ball-and-socket joint in the hip is shaped instead like an egg-and-socket in people with achondroplasia.

***

Physical Therapist: Your hips sway when you walk because one leg is obviously longer than the other.

Me: No, I have my orthopedist’s report documenting that my legs are precisely the same length. My hips sway when I walk because the ball-and-socket joint in the hip is shaped instead like an egg-and-socket in people with achondroplasia.

 ***

Nurse: Your temperature is pretty high. I’m a bit worried.

Me: These anesthesiology guidelines I got from the Federal Association for Short-Statured People say that hyperthermia is to be expected post-op in patients with achondroplasia.

Sometimes the information I offer goes unheeded. In both the U.S. and in Germany, I have found arrogance is equally common among doctors and healers. Some of them are delightfully approachable, and others are so socially off-putting that they make you want to throw your wheelchair at them. The same arrogance, however, can take different forms. I have documented before the particular brand of pomposity so endemic to doctors, and it is safe to say that holistic healers are less likely to treat their patients like products on an assembly line because, by definition, they are more likely to take psychological well-being into account. But they are also more likely to endorse a one-size-fits-all solution for health, which invariably marginalizes minorities like me.

Those of us with extremely rare conditions are far more likely to find specialists among those licensed in medicine than among alternative healers. Living Naturally, the only website on alternative treatments I could find that even mentions achondroplasia, emphasizes that none of the therapies they suggest for achondroplasia have ever been tested on patients who have it. To be fair, rare conditions by definition are not well-known to your average GP either. But physicians more often know how to work with the facts, embracing the medical literature on achondroplasia I hand to them. Some alternative healers also embrace such literature, while others dismiss anything written by anyone in a white coat.

Even when a visceral hatred of hospitals and their hosts is irrational, it is understandable. My most recent stay involved some of the kindest medical professionals I have ever encountered but nevertheless left me waiting for two and a half hours on a metal bench with no back support in a hallway glaring with fluorescent lights and echoing with the cries of patients in pain. I respect everyone’s right to opt against surgery, or any medical treatment, as long as their condition does not cause others harm. But no matter how much modern medicine has abused minorities’ trust, disabled people are the only minority that cannot afford to forgo it.

A worldwide study presented to Little People of America found that, at this point in history, dwarfs have a higher quality of life—i.e., access to effective health care, employment opportunities, acceptance in society—in Northern Europe than anywhere else on earth. Reductive arguments that demonize all of Western medicine because the Nazis! can be canceled out by reductive arguments that dismiss anything developed outside the West because Asia’s terrible disabled rights record!  

Broad generalizations like “Natural is better” can only be upheld by those ensconced in the privileges of a non-disabled body. In 2011, the parenting website Offbeat Families banned the term “natural birth”—urging writers to instead refer to “medicated” and “unmedicated” birth—because “natural” had so often been used to imply “healthier.” An unmedicated birth is wonderful for anyone who can and wants to experience it, but it is important to remember that it is a privilege. A privilege, like a disability, is neither your fault nor your achievement.      

“Healthy” is a relative idea. Our choices about our bodies will always be limited. This is a sometimes terrifying fact to face. But in the public debate, we must remember that it is a fact those among us with rare disabilities and conditions can never avoid. In failing to remember it, we fail to make decisions about human health that are truly informed.

 


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Pasch and Passover

5 Apr

(xkcd comic used under CC 2.5 via)

 

Taking this holiday weekend off and leaving you with the philosophical musings of Duncan Hull.  Until next week!

 

 

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.  

 

 

 

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“We’ve Never Lived in Such Peaceful Times”

4 Jan

Time allowed(Image by H. Kopp-Delaney used under CC 2.0 license via)

 

“Is the world becoming a more dangerous place?” This is not a subjective question, but it is all too often answered by entirely subjective findings. Do you watch the local news and listen to a police scanner? Do you see graffiti as street art, or cause to clutch your valuables and not make eye contact with anyone? Do you know someone personally who has been robbed, attacked, or murdered?

The objective answer to the original question, however, is no. The world is in fact safer than it has ever been in human history because we humans have become drastically less violent. Never before has there ever been a place of such high life expectancy and such low levels of violence as Western Europe today. Around the globe, there are lower rates of war and lower rates of spankings. There is no guarantee that the decline in violence will continue. But most of us have a hard time even believing that it exists at all.

In his book The Better Angels of Our Nature, Harvard psychologist Stephen Pinker proves that the human emotional response to perceived danger—especially danger towards ourselves or someone with whom we can easily empathize—always risks distorting our perceptions of safety. One of the problems of empathy, he argues, is that we more readily feel for those we perceive to be more similar to us. This results in our investing more time, money and emotion toward helping a single girl fighting cancer if she speaks our language and lives in a house that looks like our own than toward helping 1,000 foreign children fighting malaria. We are more likely to disbelieve a victim of abuse if we can more quickly identify with the accused, and the same is true for the reverse scenario. And if you have been the victim of a horrendous crime or are struggling to survive in any one of the countries ravaged by war this year, you may become angry at any suggestion that the world is getting better, lest the world ignore the injustices you have suffered.

Those of us working in human rights must beware these problems whenever we trumpet a cause. Every activist’s greatest enemy is apathy, and fear of it can lead us to underscore threats while downplaying success stories in order to keep the masses mobilized. But any method founded on the claim that we have never lived in such a dangerous time is spreading lies.

As Pinker and Andrew Mack report in a recent article:

The only sound way to appraise the state of the world is to count. How many violent acts has the world seen compared with the number of opportunities? And is that number going up or down? … We will see that the trend lines are more encouraging than a news junkie would guess.

To be sure, adding up corpses and comparing the tallies across different times and places can seem callous, as if it minimized the tragedy of the victims in less violent decades and regions. But a quantitative mindset is in fact the morally enlightened one. It treats every human life as having equal value, rather than privileging the people who are closest to us or most photogenic. And it holds out the hope that we might identify the causes of violence and thereby implement the measures that are most likely to reduce it.

There is a risk that some will see the decline in violence as reason for denying crime (“Rape hardly ever happens!”), dismissing others’ pain (“Quit whining!”), and justifying their disengagement (“See? We don’t need to do anything about it!”). Pinker and Mack, however, claim the decline can be attributed in the modern era to the efforts of those in the human rights movements. In the example of violence against women:

The intense media coverage of famous athletes who have assaulted their wives or girlfriends, and of episodes of rape on college campuses, have suggested to many pundits that we are undergoing a surge of violence against women. But the U.S. Bureau of Justice Statistics’ victimization surveys (which circumvent the problem of underreporting to the police) show the opposite: Rates of rape or sexual assault and of violence against intimate partners have been sinking for decades, and are now a quarter or less of their peaks in the past. Far too many of these horrendous crimes still take place, but we should be encouraged by the fact that a heightened concern about violence against women is not futile moralizing but has brought about measurable progress—and that continuing this concern can lead to greater progress still…

Global shaming campaigns, even when they start out as purely aspirational, have led in the past to dramatic reductions of practices such as slavery, dueling, whaling, foot binding, piracy, privateering, chemical warfare, apartheid, and atmospheric nuclear testing.

The decline of violence undermines the arguments of those who invest their energy in fear-mongering (“People are evil and out to get you!”), self-martyrdom (“I’ve tried for so long—I give up!”) or indifference (“There’s no point to even trying.”). In his excellent book, which is well worth your time, Pinker demonstrates that all humans are tempted to use violence when we are motivated by feelings of greed, domination, revenge, sadism, or ideology (i.e., violence for a greater good), but we have proven that we can overcome these temptations with our capacity for reason, self-control, sympathetic concern for others and the willingness to adhere to social rules for the sake of getting along. There is much work to be done, but the decline is ultimately cause for hope. 

Happy New Year!

 

 

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Political Correctness Makes You More Creative

21 Dec

Europe According to Germany(“Europe According to Germany” by Yanko Tsvetkov used under CC 2.0 via)

 

Study On Avoiding Stereotypes Smashes Stereotype About Avoiding Stereotypes. Sounds like an Onion headline. The recent study at UC Berkeley reveals that encouraging workers to be politically correct—that is, to challenge and think beyond stereotypes—results in their producing more original and creative ideas. As Olga Kazhan points out at The Atlantic, this flies in the face of conventional wisdom, which asserts that political correctness stifles the truth for the sake of acquiescing to the hypersensitive. Yet the study shows that truth and knowledge are obscured when facts are simplified into stereotypes.

Take, for example, the belief widely held in the West that women talk more than men do. Unpacking this stereotype unleashes several revelations about modern Western culture. All in all, women do not use more words than men on average. Women do talk more than men in certain small groups, but men talk more than women at large social gatherings. Listeners, however, tend to become more easily annoyed by women talking in such settings, so they notice it more. Baby girls in the West do start talking earlier than baby boys do, leading pop culture to promulgate the idea that female loquaciousness must be inborn. Yet more than one study have found that girls’ advantage may very well be because mothers talk more to their infant daughters than to their sons. And what about the stereotype that women remember emotional experiences better than men do? There appears to be evidence for this, rooted in the fact that American adults tend to ask girls more questions about their feelings during their developmental years, while encouraging boys to instead focus on their actions and achievements.

So while the genders may behave differently in some respects, further scrutiny shows that we certainly treat the genders differently. Political correctness demands we alter this. And then see what happens.

But instead of being seen as a great generator of progress and innovation, political correctness is more often perceived as a silencing technique, if Google’s image search is any indication. There is some valid cause for this concern. One of the worst tactics taken up by some minority rights activists is the phrase You can’t say that. It often stems from the noble idea that no one should have to endure threats, harassment and direct insults in everyday life. But simply banning bad words can lead to the destructive assumption that simply using the right words makes everything okay.

After all, avoiding stereotypes is not about shutting up but embracing depth and nuance. Professor Mihaly Csikszentmihalyi researches happiness and creativity, and in his latest book, he finds that one of the best tools for innovation is not limiting our own selves to gender stereotypes:

Psychological androgyny… refer[s] to a person’s ability to be at the same time aggressive and nurturant, sensitive and rigid, dominant and submissive, regardless of gender. A psychologically androgynous person in effect doubles his or her repertoire of responses and can interact with the world in terms of a much richer and varied spectrum of opportunities. It is not surprising that creative individuals are more likely to have not only the strengths of their own gender but those of the other one, too.

While the studies cited here focus on gender stereotypes, it’s easy to see how political correctness can foster productivity when applied to all sorts of minorities. For example, one way to react to  urgings to avoid antiquated terms like “Bushmen” and “Hottentots” is to ask why. This will reveal that “Hottentot” was a name assigned by Dutch and German colonists meant to caricature the sound of the Khoekhoe language, and that “Bushmen” was a derogatory name for the San first assigned to them by the Khoekhoe. This uncovers the fact that the San have been the most exploited people of southwestern Africa, primarily because their society has no system of ownership. They have been stereotyped as primitive and therefore less intelligent, but like so many non-state societies surviving into the present day, they have done so by developing skills that help them live in isolation – i.e., in unforgiving environments where other peoples have perished.

Or you can react to the urging to avoid “Hottentots” and “Bushmen” by simply saying, “I’ll call them whatever I want to call them!”  As the saying goes, stereotypes are there to save us the trouble of learning.

 

 

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The Best Picture Books for Preventing Prejudice

30 Nov

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

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

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

 

 

 

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

 

 

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

 

 

 

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

 

 

 

 

 

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

 

 

 

 

 

 

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

 

 

 

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

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

 

 

 

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

 

 

 

 

 

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

 

 

 

 

 

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

 

 

 

 

 

 

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

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

 

 

 

 

 

 

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

 

 

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

 

 

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

 

 

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

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

 

 

 

 

 

 

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

 

 

 

 

 

 

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

 

 

 

 

 

 

 

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

 

 

 

 

 

 

 

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

 

 

 

 

 

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

 

 

 

 

 

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

 

 

 

 

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

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The Best Book on Diversity To Date…

 

 

 

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

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

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How To Do Empathy Wrong

23 Nov

sssssh(Image by Valentina Cinelli used under Creative Commons license via)

Have you ever had someone say to you, “I know exactly what you’re going through!” only to have them then rip into a monologue that proves they have no idea what you’re going through?

SarahKat Keezing Gay, whose newborn son needed a heart transplant, has had plenty of experiences with this:

One of my favorites has always been people comparing children’s issues with those of anything that isn’t a child. “Oh, I know just what it’s like to have a newborn. My cat wakes me up all the time!” or “Having kids is expensive, sure, but it’s nothing like having a horse.”

With Hud’s medical stuff, most of the comparisons were to really old people with totally different, usually terminal conditions. “I know just what it feels like to wait for a baby to get a heart transplant. My 85-year old great-uncle had liver disease, and waiting for his transplant was so hard on my family!” … This was particularly chafing when entangled with glaring inaccuracies, such as: “He’s sick? When my grandma went through chemo, she looked terrible, so he must be taking lots of herbal supplements to stop the hair loss and everything, right?”

She is hardly the first survivor of trauma who has had to deal with blunt comparisons that are ultimately unhelpful. In college, I witnessed a trust fund kid compare his worries about paying for a new car to a trailer park kid’s worries about paying for his course books: “I hear ya, bro – I’m struggling, too!”

The best way to get along with the rest of the world is to try to understand it. And most understanding is achieved by comparing the unknown to that which we already know. But there is an unproductive tendency in the it’s-a-small-world-after-all mindset to relativize all hardship to the point of equating all hardship. Twilight star Kristen Stewart told interviewers that unwanted paparazzi photos made her feel “raped.” Millionaire businessman David Harding pronounced the words “geek” and “nerd” to be “as insulting as n*****.” Famed divorcée Elizabeth Gilbert of the Eat, Pray, Love franchise declared that divorce can be more anxiety-inducing than the death of a child, asserting this in a book devoted to gushing about the joys of her new-found love. I don’t know Gilbert or Harding or Stewart personally, so it would be presumptuous to conclude that they must simply be naïve and have no idea what trauma or death threats or bereavement feel like. But their utterances are false equivalencies that alienate more people than they enlighten.

In the recent words of NPR’s Annalisa Quinn: “ ‘We’re all the same on the inside!’ is not that far from ‘Everyone is like me!’ which is not that far from ‘My perspective is universal!’ ” The phrase I know exactly what you’re going through, while sometimes well-intentioned, can ultimately be silencing because it puts the listener in the awkward position of having to choose between keeping quiet and trying to find a gracious way to say, “No, you don’t know what I’m going through.” Saying such a thing can come off as angry and self-involved, so most polite people opt instead to hold their tongues, sparing the other person their upset but also an opportunity to be taken out of their comfort zone and learn about an experience they’ve never had.

In his adorable piece “How To Be Polite,” Paul Ford writes that the fastest way to make a friend as an adult is to ask them what they do for a living and—no matter what their job is—react by saying, “Wow. That sounds hard.” The last time he used this line he was talking to a woman whose job it was to pick out jewelry for celebrities.

It’s a sure-fire way to a person’s heart because we all think we work really hard. We all think we have had trials and tribulations. The blues would never have broken out of the Mississippi Delta if we didn’t. But while our lives are all equally important, they are not equally painful:

Everyone on earth is privileged in some way, but not everyone has experienced severe pain.  Arguing with family, enduring rejection in love, searching for a lucrative and fulfilling job, dealing with the bodily break-down that comes with the onset of age – it is all cause for pain. The pain is both valid and common, which is why there is a plethora of books and films and songs about these experiences. And which is why we expect such pain from life and why it is fair of others to expect us to learn how to deal with it. It is substantial, but it is not severe.

Those who experience severe pain are, thankfully, becoming a minority as our society becomes ever safer and healthier, with rates of life-threatening illness and violence lower than they have ever been in human history. But misery loves company, and severe pain brings on not only profound stress but great loneliness. That’s why support groups exist. Having friends who try to understand, not because they see a chance to tell their own story but because your happiness genuinely matters to them, is lovely. Their efforts signify bravery. But they can never offer the unique comfort of connection that blooms from really knowing what you’re going through.

This was clear when I recently spent an evening at a dinner table where I was the only one who did not have a parent who had died or disowned me. It is clear whenever I read Keezing Gay’s accounts of her baby’s transplant, which moves me to tears every single time, all of them merging to constitute but a drop in the ocean of what her family went through.

The middle-aged mother of a deceased teenager said to me months after her death, “Our friends in Utah got the wrong news and thought for a while that it had been me. That I was the one who died. And I immediately thought when I heard that, Why couldn’t it have been me?  I had a good life.  My life was good until this moment.”

My life was good until this moment.

Unlike mundane pain, severe pain so often brings perspective. Of course, whether or not it does ultimately depends upon the wisdom and strength of the individual. This fact is lost on those who uphold the long tradition of viewing severe pain as a beauty mark worth yearning for because it supposedly imbues the sufferer with automatic heroism. This tradition pervades many circles, though most often those of the young and artsy navel-gazers.

Wes Anderson, who may be our generation’s king of the artsy navel-gazers, captured this problem surprisingly well in Moonrise Kingdom. The scene involves two pre-teens: Suzy the Outcast, who is angry about her mother’s infidelity and often gets into fights at school, and Sam the Oddball Orphan, who has been bounced around from foster family to foster family before being bullied at camp.

She tells him dreamily, “I always wished I was an orphan. Most of my favorite characters are. I think your lives are more special.”

Her sweetheart pauses and narrows his eyes. “I love you, but you don’t know what you’re talking about.”

Because it’s not empathy when it’s all about you.  As Nigerian feminist Spectra wrote in her critique of American Mindy Budgor’s white savior complex gone wild: “This isn’t about people ‘staying where they are’ and disengaging from the world. This is about learning to engage with other cultures with some humility, or at least some bloody respect.”

There is no benefit to engaging in Oppression Olympics; i.e., to trying to prove that abused children have it worse than soldiers with PTSD, or that black women have it worse in the U.S. than gay men. But there is a benefit to acknowledging the differences between their experiences as well as the differences between mild, moderate and severe pain. The benefit is true understanding.

Shortly after an uproar over her rape comment, Kristen Stewart apologized for her crudeness. Acknowledging what we don’t know is an indispensable step in the path toward true understanding. The most deeply thoughtful, impressively modest people I know do this all the time. Their frequent deference in combination with their unwavering support proves that there’s a world of a difference between trying to put yourself in someone else’s shoes and assuming you’ve already worn them.

 
*As in all of my posts, the identities of many of the people cited here have been altered to protect their privacy.

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Are East Germans A Minority?

9 Nov

Ampelmännchen(Image by S. Freimark used under CC 2.0 via)

 

I needed only head out my front door and walk to the end of my block to get to the Light Border commemorating that 25th anniversary of the fall of the Berlin Wall tonight. The price to pay for this was the waves of tourists that have been washing through the street all weekend. Parents trying to explain to it to their children have been constantly underfoot. Which makes you pause and wonder, How do you explain it?

The fall of the Wall is my very first memory of watching the news a child. It was bizarre to see so many people rejoicing that It is finally over!, when I had only just discovered that it had ever been there in the first place. In later years, I of course learned more – specifically, the American version of the story that asserts that Ronald Reagan brought down the Wall and America won the Cold War. The fact that so many Berliners were chanting, “Gorbi! Gorbi!” amidst the celebrations 25 years ago is conveniently left out of this narrative.

I moved from New York to Berlin 10 years ago, when the shine of Reunification had well worn off.  The former East Germany was known as the land of unemployment and racism, and the former West Germany was known as the land where little had changed and nobody cared about the East. The terms Jammer-Ossi (“Whiny Easterner”) and Besser-Wessi (“Uppity Westerner”) were well known.  Some East Germans began talking about what they missed about the old country: a much lower crime rate, better kindergartens, consumer products low in quantity but built to last. And, above all, no unemployment.

One of my earliest jobs in Berlin put me in a room with five other coworkers. One of them hailed from Munich and, while reading the morning paper, regularly scoffed about East German nostalgia. “There’s nothing to be nostalgic about!” she huffed. “It was disgusting, just like the Third Reich!” My other coworkers remained silent, but after her umpteenth outburst, a young man finally sighed, “It wasn’t the Third Reich. Yes, there was no freedom of speech or travel, but it was not about eugenics or mass genocide!” The conversation quickly unraveled into uncomfortable silence.

One of the women who had remained silent all along later approached me at the water cooler. “What did you think of that?”

“I thought she was maybe being a bit rude,” I shrugged.

“So rude! I just didn’t want to get into it. I fled East Germany to the West in the Seventies.”

My eyes widened.

“That’s a long story and I don’t want to get into it. But I can’t take her pig-headed opinions about it. She’s always going off about the dumb East Germans, but she doesn’t understand what those people went through!”

Indeed, few of us truly can. For the former East Germany to not only experience unemployment for the first time but massive unemployment—up to 25% in some places—is like a town where no one has ever been sick suddenly overrun with the flu. In the early 1990s, the very idea of writing resumes and performing job interviews struck many East Germans as crass: “You mean I have to keep telling people how awesome I am till they hire me?  That’s prostitution!”     

I have friends from the East who still feel pressured to abandon all hope of working anywhere near where they grew up, moving out of state in search of better futures in Frankfurt or Hamburg or Cologne. Many of their parents were white collar professionals shocked to find themselves unemployed after the Wall came down and have never been fully employed since. I also have friends from the West who moved to the East after Reunification and were ostracized in the workplace. Tensions have eased a bit in the 10 years I’ve lived here, but Berlin is undoubtedly the place you’re most likely to see people who grew up on opposite sides of the Wall intermingling. The extent of prejudice between the two former nations became a legal issue last year when a woman sued a potential employer for discrimination. Interviewers at a company in southern Germany had scrawled on her job application “Drawback: East German.” The court ruled against the plaintiff on the grounds that East Germans do not qualify as an ethnic minority.

Legal arguments aside, those who grew up in East Germany certainly have a different history that has had considerable impact upon their culture. Girls and boys named “Mandy,” “Cindy,” “Jenny,” or “Kevin” are easily identifiable as coming from East Germany, where Hollywood movies in the 80s and 90s set a trend. A recent study revealed that such names invoke prejudice among school teachers who often assume such children will come from anti-intellectual home environments. East Germans over 30 pride themselves on being able to read Cyrillic, while their relationship to Russia is less affectionate. When the Soviet Forces occupied the East, they looked upon it as That Country That Invaded Us Twice In 20 Years. Russia lost more of its citizens to Nazi Germany—the conservative estimate is 20 million—than anyone else. East Germans in turn saw the Soviets as That Army That Raped Over 1.4 Million Of Us. The two countries never became true friends.

But would it help to spread diversity awareness and promote tolerance between East and West Germans if the former were recognized as a minority? Or should we stick to seeing the Cold War and the Fall of the Wall as a struggle not of nations but of ideas? After all, it was democracy, not nationalism, that was the driving force behind the peaceful revolution that brought down the Wall. Yet democracy is frequently given little thought beyond its associations with that nebulous word “freedom.” As one East German friend pointed out, too many portrayals of Reunification focus a lot more on the freedom to buy a Porsche and choose between 16 different brands of toothpaste than the freedom from government surveillance, knee-jerk patriotism, voter suppression, and execution by the state. One of the quotes of the East German uprising most well-known over here—but rarely heard in the U.S.—came from protester Steffi Spira: “I want my grandchildren to grow up in a country where they do not have to salute the flag!”

When the Nationalist Party and Neo-Nazi groups find substantial support in the East among the disaffected youth of today, their opponents frame it as a battle not against evil but for democracy. Because nothing undermines dictatorship better than the idea that Everybody matters. It is the essence of both democracy and minority rights. And no developed nation knows as well as Germany how fragile this idea is.

 

 

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The Easiest Way to Avoid Saying “He” or “She”

2 Nov

Sexism abounds(Image used under CC 2.0 via)

 

A linguist will have a hard time if he tries to come up with the perfect gender neutral pronoun in English.

A linguist will have a hard time if he or she tries to come up with the perfect gender neutral pronoun in English.

A linguist will have a hard time if he/she tries to come up with the perfect gender neutral pronoun in English.

A linguist will have a hard time if s/he tries to come up with the perfect gender neutral pronoun in English.

A linguist will have a hard time if they try to come up with the perfect gender neutral pronoun in English.

A linguist will have a hard time if zhe tries to come up with the perfect gender neutral pronoun in English.

A linguist will have a hard time if zie tries to come up with the perfect gender neutral pronoun in English.

Depending upon your political leanings, you may find one or more of the sentences above ridiculous. Many people find the very idea of gender neutral pronouns preposterous to the point of sending death threats to those who have dared to formally enter them in style guides. In the middle of the last century, Strunk and White dismissed any linguistic adaptations motivated by gender equality because, they argued, the word “he” becomes gender neutral, not androcentric, when referring to everyman, mankind, etc. This argument has failed to hold up since the women’s movement, and most Western periodicals agree that such language is archaic with male chauvinist undertones, hence the plethora of proposed alternatives.

This can get harder in other languages. In German, everyone knows right away if your best friend is a girl or a guy because you have to call a female your “best friendess.” A troll gives away her gender in Russian or French the moment she types, “I’m smart/rich/European.” A Japanese speaker would give it away at the word “I.”

But wherever there are strict rules about gender, there is deep confusion about gender. A “girl” in German (“Mädchen,” from which we get “maiden”) is technically gender neutral because all words ending in –chen are. Thus, German kids grow up on stories like Snow White and Little Red Riding Hood containing lines such as, “The prince took the maiden home to his castle and married it.” English isn’t any more logical when considering that almost all of our modern caricatures of ducks—ducklings, rubber duckies, Donald, Daffy, and Duckula—are automatically associated with boyishness, yet the word “duck” is technically as female as the word “cow.”

Most people on earth speak a language that distinguishes between “he” and “she” because most of the languages of the former colonial powers do. But a study of several hundred of the 6,000+ languages on earth found most do not. Whether you’re speaking Finnish or Farsi, you can talk about your best friend, your teacher, your doctor or your least favorite coworker for hours without letting anyone know anything about the person’s gender identity. No “his” and “hers” bath towels, no needing to find out your baby’s sex for linguistic ease.

So while The New York Times Manual of Style and Usage now urges its writers to avoid gendered pronouns, it appears the best solution would be to avoid English altogether.

 

 

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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.

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Ghost + Dwarf = Double The Horror

12 Oct

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

 

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

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

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

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

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

 

 

White Woman Sues Spermbank for Accidentally Giving Her Black Donor’s Sperm

5 Oct

Unity in Diversity(Image by Fady Habib used under CC 2.0 via)

 

Man, we can’t go two months without some couple making headlines over a baby they didn’t plan for. An Ohio woman named Jennifer Cramblett is suing a spermbank for impregnating her with the contents of a vial different from the one she selected. The mix-up resulted when a clerk misread Vial 330 as “380.” Her lawsuit reads:

On August 21, 2012, Jennifer gave birth to Payton, a beautiful, obviously mixed race, baby girl. Jennifer bonded with Payton easily, and she and [her partner] Amanda love her very much. Even so, Jennifer lives each day with fears, anxieties and uncertainty about her future and Payton’s future. Jennifer admits that she was raised around stereotypical attitudes about people other than those in her all-white environment. Family members, one uncle in particular, speaks openly and derisively about persons of color. She did not know African Americans until her college days at the University of Akron.

Because of this background and upbringing, Jennifer acknowledges her limited cultural competency relative to African Americans, and steep learning curve, particularly in small, homogeneous, Uniontown, which she regards as too racially intolerant.

As just one example, getting a young daughter’s hair cut is not particularly stressful for most mothers, but to Jennifer it is not a routine matter, because Payton has hair typical of an African American girl. To get a decent cut, Jennifer must travel to a black neighborhood, far from where she lives, where she is obviously different in appearance, and not overtly welcome.

One of Jennifer’s biggest fears is the life experiences Payton will undergo, not only in her all-white community, but in her all-white, and often unconsciously insensitive, family. Despite her family’s attempts to accept her homosexuality, they have not been capable of truly embracing Jennifer for who she is. They do not converse with her about her gender preference, and encourage her not to “look different,” signaling their disapproval of her lesbianism.

Though compelled to repress her individuality amongst family members, Payton’s differences are irrepressible, and Jennifer does not want Payton to feel stigmatized or unrecognized due simply to the circumstances of her birth. Jennifer’s stress and anxiety intensify when she envisions Payton entering an all-white school. Ironically, Jennifer and Amanda moved to Uniontown from racially diverse Akron, because the schools were better and to be closer to family. Jennifer is well aware of the child psychology research and literature correlating intolerance and racism with reduced academic and psychological well-being of biracial children.

Family planning is so endlessly complicated that any law-abiding individual seeking privacy deserves it. But Cramblett is going public with her pursuit of compensation for emotional distress and therein invites judgment. John Culhane writes at Slate that this sort of blunder is bound to happen in the free market of assisted reproductive technology. Julie Bindel at The Guardian warns of a creeping let’s-get-a-designer-baby approach to parenting among those using IVF. “Just remember,” she writes. “If the child you end up with does not exactly fit your ideal requirements, you can’t give it back – and nor should you even suggest that something bad has happened to you.”

Do parents have the right to be guaranteed certain kinds of children? Those pursuing parenthood via sperm donors, egg donors, or adoption have much more freedom to decide against certain kinds of children than those using nothing but their own biology. The application for becoming an egg donor in New York contains over one hundred invasive questions about family and medical history, as well as education, favorite sports, artistic talents and “additional characteristics” such as “cleft chin, full lips, big eyes, or high cheekbones.” Applicants are required to submit three photos “that shows [sic] your face and/or body type clearly.”

I understand why such questions are asked. Many if not most parents already know such things about those involved in producing their child, so why shouldn’t the IVF parents be allowed to know? If my partner and I were to join their ranks, what sort of donor profile would seem most appealing to us? Deciding upon something inherently entails deciding against something else. Nevertheless, it is hard not to see this tick-the-box approach to baby-making as eugenic. How many parents would accept my eggs, with their 50% chance of passing on achondroplasia? How many would sue if someone accidentally got them without asking for them?

Parents seeking to adopt children here in Germany are asked what kind of children they would and would not like to have before they look at profiles. For example, do you mind if your children look extremely different from you? What about physical disabilities? Mental disabilities? Drug addiction? In an interview with a family whose two children were adopted, I was told that the agencies encourage prospective parents to be utterly frank about their fears and prejudices – that an insistence along the lines of, “We can handle anything!” will sound suspiciously naïve.

Such brutal honesty strikes me as reassuringly well-informed, perhaps the result of infamously ideological parents like Josephine Baker or Jim Jones, who flaunted their rainbow families at the expense of the children’s individuality. Reading Cramblett’s descriptions of her relatives’ hurtful reactions to her sexuality, I can sympathize with the feeling that battling one kind of bigotry can be hard enough. Everyone deserves to live free from the unnecessary pain of bigotry. But if we’re going to be suing someone, wouldn’t it be more logical to file complaints against those who make her daughter feel stigmatized and unrecognized? Surely they’re the ones causing “emotional distress.”

While the spermbank does appear to have erred out of negligence and may be at fault, would awarding Cramblett for “emotional distress” not set a precedent and open the door for endless lawsuits over the births of minority children parents did not explicitly wish for? My parents had a 1 in 40,000 chance of producing a child with achondroplasia, as does anyone reading this. (That is, unless you already have achondroplasia.) Should doctors warn every prospective parent of those odds? Should they warn us of the chance for racial atavism? If homosexuality proves to be genetically determined, will parents have a right to sue doctors who fail to remind them of the risk? The very idea of being financially “compensated” for emotional distress is often silly to those of us who know from firsthand experience how vastly unreliable life can be.

Legal decisions aside, my primary hope is that Cramblett and her partner will explain the lawsuit to her daughter in a way that does not cause her to feel any more conflicted about her extraordinary appearance than her relatives’ racist views already do.

 

 

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Would You Rather Be Born Disabled or Become Disabled? (Part Two)

28 Sep

Dead body(Image by Stéphane Lavoie used under CC 2.0 via)

 

Most of them were not born with dwarfism. This is what I observed from a history of eminent dwarfs who enjoyed some degree of success outside of freak shows before the minority rights movements of the late 20th century. Most of them, such as Toulouse-Lautrec, experienced stunted growth as the result of an accident or an illness well after birth. Well after it would have been socially acceptable for their parents to give them up or hide them away. Such cases account for a very small minority of people with dwarfism, yet they dominated the scene of non-marginalized dwarfs for most of Western history. This got me thinking.

I conducted a crowd-sourcing experiment on Facebook, asking friends to name very famous people with severe physical disabilities. They had to be household names, nothing along the lines of “that little guy on Game of Thrones” or “that comic on that show from the Eighties who had a muscle problem.” The list of responses bore no surprises: Helen Keller, FDR, Beethoven, Frida Kahlo, Ray Charles, Christopher Reeve, Stephen Hawking, Michael J. Fox. All but two of them—Stevie Wonder and Oscar Pistorius—incurred their disability after infancy. Was this another sign of congenitally disabled people being hidden away? The vast majority (85%) of disabled people become disabled after birth. But the 15% whose conditions are congenital appear to be underrepresented in public.

Does society more readily accommodate those who lose certain abilities than those who never had them to begin with? Anthropologists know that for most of human history any injury or illness without a visible cause was presumed to be the result of black magic or a vengeful deity. From the European mythology of the changeling right up to the Nazi condemnation of genetic “monsters,” congenitally disabled people have been traditionally viewed as non-human and segregated accordingly. Vestiges of this remain in our general tendency to simply not consider congenitally disabled people as potential friends or partners or even peers, in contrast to the conviction that we should stick by our loved ones no matter what befalls them. Pop icon Dick Clark was warmly welcomed back to television as a co-host after his debilitating stroke, but I’ve yet to find a TV presenter in America who was born with a speech impairment like the one Clark developed. I don’t have the funding to empirically test my hypothesis, but you don’t have to delve too far into mainstream media to come up with stories, articles and interviews spotlighting someone who seemed to have it all until one fateful day when tragedy struck. And notice the comparable paucity of such resources on people who have always lived that way.

I squirm as I write this for fear of implying that those who become disabled have an easy time of it. Far from it. It would be utterly callous to ignore the often indescribable strain illness and injury can inflict on relationships, and the horrific social isolation that too many patients face. There’s a reason that “fair-weather friend” is a well-known term. And the human fascination with suffering can be more voyeuristic than empathic.

But no matter the motive, it is always accompanied by the unspoken understanding that no one would ever want to become disabled. This is, in essence, the most universal view of disability: Who on earth would want to lose an ability of any kind?

Even as a congenitally disabled person I understand this. I would never choose to erase my dwarfism from my life experience. But I do not like becoming more disabled than I already am. After tendon injuries and surgery to combat stenosis, I miss being able to ride a bike, to walk barefoot, to cook and type and sit on benches for long periods without pain. And if tomorrow I were to lose my ability to hear, see, or walk, I would be distraught, to put it mildly.

But in voicing this, it is crucial for me—and everyone listening to me—to recognize that my becoming deaf would be a profoundly different experience from that of my friend who has been Deaf since he can remember. Many Deaf people with cochlear implants have told of how overwhelmingly unpleasant hearing sound for the first time can be: One man has “discovered that, far from being adorable, the voices of his grandchildren were rather shrill and often best experienced with the implant turned off.” That Deaf Guy comic strip tells of the authors’ son pitying people who don’t know how to sign.

Similarly, those who have always needed a wheelchair to get around tend to see it as no worse than needing shoes to get around. Yes, it’s inconvenient in a world where ramps are all too rare, just as it would be inconvenient for those of us who are ambulatory if most public facilities didn’t accommodate the shoes on our feet. But that difficulty is imposed by a society that fails to accommodate certain minorities, not by the disability itself. Congenitally disabled bodies do not notice what they lack. As so many have said before me, How can you miss something you never had to begin with?

Researching all of this has brought me to the following conclusion: As individual humans, it is harder for us to deal with becoming disabled than with being born disabled. But as a society, the reverse is true – it is harder for us to accept someone who is born disabled than someone who has become disabled.

As a result, those who were born disabled and those who have become disabled often find themselves on opposite ends of the argument. A woman like Stella Young, who has never been able to walk, is rightly insulted when people tell her she is brave and inspiring just for getting up every morning. (Her TED Talk below is worth every minute.) But a woman like Christine Miserandino, who is slowly losing the ability to walk, is rightly seeking others’ encouragement and support as she struggles to do something she once took for granted. (Her oh-so-quotable Spoon Theory has already been linked on this blog before.)

 

 

Because the majority of disabled people are like Miserandino, not Young, the discourse on disability is dominated by sympathy, fear and lamentation. It is hard for us to remember that we shouldn’t pity a woman with cerebral palsy for her spasticity when so many people with multiple sclerosis openly mourn their loss of agility. Those who become injured or ill are entitled to their grief and no one should ever attempt to silence them. But everyone should think beyond their own experience before they publicly decry their condition as unbearable. Especially when it ends up joining the chorus of ableism led by non-disabled people.

One of the most read articles at The Atlantic this month is a piece by bioethicist Ezekiel Emanuel who explains why he hopes to die before age 76:

[Living too long] renders many of us, if not disabled, then faltering and declining, a state that may not be worse than death but is nonetheless deprived. It robs us of our creativity and ability to contribute to work, society, the world. It transforms how people experience us, relate to us, and, most important, remember us. We are no longer remembered as vibrant and engaged but as feeble, ineffectual, even pathetic.

Emanuel is an amateur mountain-climber and a professional writer. He is entitled to feel upset at the idea of losing the abilities he currently holds most dear. And his other arguments about the drawbacks to longevity are as thought-provoking as physicians’ personal opinions on life-saving interventions. But his decision to openly denounce dependence and weakness as unproductive and undignified increases the lifespan of our culture’s ableism. How can we ever stop marginalizing disabled people if we continue to openly voice our fear of becoming like them?

The experiences of those who are born disabled and the experiences of those who become disabled are profoundly different and equally valid. Simply remembering that would change a lot.

 

 

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Would You Rather Be Born Disabled Or Become Disabled? (Part One)

21 Sep

Abstract Body(Image by srslyguys used under CC 2.0 via)

 

Imagine your body just as it is, in a world that looks exactly like the one we live in, but for one crucial difference:

You’re at a dinner party with some friends and some new faces, and you excuse yourself before heading to the bathroom. When you return to the table, you notice a few people exchanging looks. You wonder if your friends explained your absence to those who don’t know you well. You’re not sure if you should explain it yourself. Do you owe it to them? You’re not embarrassed, but they look a bit embarrassed for you. Then again, maybe you’re just being paranoid? You’re not really in the mood to get into it, and maybe these people would find it inappropriate dinner conversation. Maybe they’re the kind of people who would cringe, and you’d rather not discover that about them just now because the evening has been going pretty well and they seem nice so far.

Just when you decide not to say anything, the woman next to you asks, “Is everything okay?”

You reply, “Um, yeah.”

“Why did you get up and leave? Do you smoke?”

“Oh, no. No, I had to use the bathroom.”

“Oh… Wait, you mean like… you’re one of those… um… what’s the word for it?”

“Yeah. I’ve got frequent excretion syndrome. I have to use the bathroom a couple times a day.”

“Like, more than once a week?”

“Yeah, a couple times a day.”

“Like, every few minutes?”

“No, not that often. Just every few hours or so.”

“So you can’t hold it in?”

“Well, I’m—we’re—not supposed to. Not for too long. The doctors say it’s not healthy.”

“Wow. That must be so hard! How do you it?”

If 99% of humankind evolved in a way that they only needed to excrete once a week—as ball pythons do, for example—then modern society would look pretty different. The number of toilets available in public facilities would decrease significantly. A home with a bathroom would not be unheard of, but it would be a bit of a luxury, like an apartment building with an elevator. No one would assume that dinner at a restaurant or a friend’s house would guarantee access to such facilities. And the 1% of people who still needed a bathroom a few times a day would be considered disabled.

Eventually debates would crop up as to whether needing to excrete so often is “defective” or “just different.” There would be arguments as to who should accommodate whom: Should society provide more bathrooms, or should the minority wear diapers? Would you date someone who did? It must be so hard for parents and partners to deal with someone like that! I read on the Internet that those freaks do it in the shower! I would never get in a pool with one. You shouldn’t let your kids near them!

If you lived in this world, where most people’s bodies did not need to excrete more than once a week but yours did, you would undoubtedly experience frustration, as most disabled people do. But the source of your frustration would depend upon how you got to be the way you are.

If, after an accident, you suddenly belonged to a small minority of people who needed a bathroom more than once a week, you would experience a good deal of stress adjusting to your new schedule. Losing an ability you had taken for granted would feel unfair. Life was so much easier before this happened! Why me?! Some would be arguing that they would rather die than live like that. Depending on your support network and self-image, you might join that argument. But no matter how accepting your friends and family were, you would probably struggle with some internal shame about being less independent.

But if your body had always functioned that way for as long as you could remember—as it presumably does in the real world—most of your problems would stem from how alien the majority would make you feel. In the real world, we can all admit that needing a bathroom a few times a day can be inconvenient, especially on car trips, but it doesn’t feel “wrong,” “sick,” “crippling,” “freakish,” or “sad.” In a world where you’re the minority, you might accept the idea of wearing diapers rather than demand more bathrooms be built for you, or you might be deeply insulted by it. You might decide to combat the stigma of diapers. You would likely be upset hearing people say they would rather die than live like you.

That’s the difference between people who are born disabled and those who become disabled. The latter understandably experience stress, sometimes trauma, adjusting to a new condition. The former rarely feel the need to miss what they never had to begin with. Society likes to offer both groups pity. But they often respond to this pity with different answers because they have many different experiences. As we’ll see next week, conflict can only be avoided if everyone involved—those who were born disabled, those who became disabled, and those who are non-disabled—tries to understand the others’ point of view.

 

 

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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.”

 

 

 

 

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Everyone’s Sexuality. Everyone’s.

7 Sep

mjaxmi1inge5ntm3ymu4ngnkytg5

 

Don’t read the comments. Don’t read the comments. Don’t read the comments. 

That’s what raced through my mind as I read “The Challenges of Having Sex As A Little Person” at The Atlantic. Of course I read the comments anyway. 

And I was only slightly startled to find nothing but solipsistic snickering and overdone puns. The Atlantic doesn’t win any points for ending the article on a pun, either. But praise is due for addressing the topic at all. Based on an extensive interview with Dr. Marylou Naccarato, who has Kniest dysplasia, the article takes a wonderfully sex-positive approach to the experiences of people with dwarfism and the physical obstacles they can face in bed.

As per nearly every feature on dwarfism in the mainstream media, there are some factual errors. For example, one dwarf couple is quoted claiming that people with achondroplasia require “no medication, surgeries, special needs, nothing.” (See here for a list of the many complications we are at risk for.) But Naccarato is doing great work that is revolutionary in light of the fact that Little People of America, and probably most disability advocate organizations, repeatedly shy away from the topic of sexuality.

A simple reason for their silence is that almost all disability organizations comprise just as many parents and relatives of disabled people as disabled people themselves. And who wants to debate the best way to masturbate with Mom or Dad sitting next you? A more sinister reason for the silence is one of the building blocks of modern prejudice against disabled people: that is, the presumption that they are innocent, and therefore asexual. Most positive portrayals of disabled people are cute and cuddly. Is it the only way society can accept us? Refusing to see a minority as anything but asexual is to deny them their full humanity, on par with slut-shaming, prude-shaming, queer bullying, and objectification.

Before I go any further, let me say this: I do not want to talk publicly about what I do in the bedroom and I do not want to know what you do in the bedroom. My firm belief in sex-positive feminism and equality does not mean I think that you are sexy or exciting or impressive. Unless we’re close confidantes or I’ve indicated otherwise, please assume I don’t want any mental images of you and your naughty bits, no matter what they look like.

That said, I fully support anyone’s right to desire any sort of consensual sex imaginable. Without double-standards. Without the pressure of competition. Without the nuisance of others turning their personal preferences into rigid rules.

Take, for example, the way virginity is so frequently turned into not just a game but a high-stakes tournament. When and how did you lose it is an idea all of us are expected to base much of our identity on, even as adults. This is despite the fact that, according to medicine, virginity doesn’t exist. After all, what kind of sex does a guy have to engage in to officially “lose” it? And what about girls born without hymens? When exactly do lesbians lose their virginity?

Like race, virginity is a social construct and, in the words of a very wise person on Tumblr, what can be socially constructed can be socially changed. Last year the great Tracy Clark-Flory interviewed acquaintances about the sexual experience they considered to be their “first time.” The glorious thing about her inclusive project was that it revealed human sexuality to be just as diverse as everything else about us. Some defined their first time by their first orgasm, others by a particular first touch or experience of being touched. The problem with her stretching the definition of “losing your virginity” so broadly is that it robs competitive, insecure people of their ability to set standards with which they can gloat and put others down. Wait, no. That’s another glorious thing about it. There really is no problem with recognizing everyone’s experience as equally valid.

Failing to include everyone not only causes unnecessary humiliation, but it causes us to miss out on opportunities for true enlightenment. To quote the authors of You Can Tell Just By Looking: “Sexual minorities—people whose sexual desires, identities, and practices differ from the norm—do a better job talking about sex, precisely because they are constantly asked to explain and justify their love and their lust to a wider culture and, even, to themselves.”  The more you examine harmful traditions, the less necessary they become.

This does not mean that minorities have better sex. Indeed, too many activists in the sexual revolution end up repulsing readers and listeners when they allow pride in their sexuality to devolve into arrogance, insisting their sex life is better than yours, rather than merely different. For a year, the BDSM club at my alma mater ran the slogan: “I do what you’re scared to fantasize about.” Not helpful. And kinda pathetic the more you think about it.

I will never judge someone for liking any particular kind of consensual sex, but I will judge anyone who tries to turn sex into a competition to calm their own self-doubts. Whether you’re a wise-cracking online commenter or a sex-positive pioneer, true sexual liberation is about moving beyond the middle school clique mentality, not indulging in it. It’s pretty much the least attractive thing there is.

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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 a girl with medical problems 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 simply for your body feels like a rejection of your very life. But I will not start chanting that parents should never ever make adoption plans for 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.  

 

 

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CPS: The Sticky Business of Not Minding Your Own Business

20 Jul

(Via)

 

A South Carolina woman was arrested earlier this month for allegedly letting her 9 year-old daughter play alone in the park while she went to work at McDonald’s. The mother had given her daughter a cell phone for safety’s sake, but a concerned stranger’s call to Child Protective Services led to the mother’s incarceration and loss of custody. Bloggers on both sides of the political spectrum are outraged over what they are calling a case of helicopter parenting gone mad. On Twitter, stories of “When I was a kid…” abound.

I wholeheartedly share their shock and dismay. (Seriously, couldn’t CPS have merely talked to the mother and helped her find a friend or a caregiver whose home could be a base for the girl during mom’s eight-hour shift?) But I am concerned about the mounting vitriol aimed at those whose job it is to protect the child. I grew up among social workers. And these bloggers, while rightfully critical, are failing to acknowledge that the mind-your-own-damn-business mentality they advocate is exactly what prevails in societies where everyone looks the other way when a child is neglected or abused.

Of course there are terrible social workers out there, just as there are those to be found in any profession who should really be working elsewhere. More importantly, it is dangerous to pretend that institutionalized xenophobia does not exist. A 2012 report revealed ableism appears to be a tremendous problem at CPS, with many disabled parents living in fear of being declared incompetent by social workers with a poor understanding of their abilities. In the South Carolina case, it seems reasonable to postulate that two of the American South’s most infamous cultural institutions—classism and authoritarianism—are what led to a cruel and unusual punishment doled out for what was, at best, a misdemeanor by a working mother.

But while attention to this case is warranted, news outlets tell real-life tales of wrongly accused parents to such an extent that one would assume most actions by CPS are unjustified. The media bias tends toward parents because parents are legally allowed to talk publicly about their children. Were a social worker to attempt to tell his side of story, he would be breaking the law. And children and families grateful to CPS for repairing broken homes rarely head to their local news station to rehash their past personal struggles.

We must acknowledge and condemn every instance of misconduct by social workers, just as we must acknowledge and condemn every case of medical malpractice, and of police brutality. But unlike doctors or police officers, social workers do not enjoy a wealth of Hollywood blockbusters and TV shows glamorizing what they do. Most portrayals in film and on television are fiercely unflattering: from the soulless bureaucrat too obsessed with rules to know love when she sees it, to the more sinister instrument of a government conspiracy to threaten political dissidents by taking away what they hold most dear. These stereotypes invariably evoke sympathy for the devastated parents and children, who wish those heartless busy-bodies would just learn to stay out of other people’s business. Rarely are social workers featured fighting the good fight.

And yet, that’s what they are there to do. Not to get a thrill from ripping crying kids away from their distraught parents, but to listen to every member of the family until they understand the source and extent of the problem. While pop culture promotes individual therapy as a path to wellness on par with yoga or meditation, the idea of family therapy tends to be seen as an outrageous invasion of privacy imposed by some glaring ice queen who is just waiting for the parents to slip up. Yet adept social workers know that the parents of neglected children sometimes have significant learning disabilities or were the victims of abuse themselves. When funding allows, parenting courses are available for those who have a hard time remembering how often diapers need to be changed, or that there are often alternatives to screaming and spanking. Adept social workers also know that neglected children are often overly forgiving of an abusive loved one, just as victims of domestic violence often are. And adept social workers know that children are far more likely to be abused, molested, or kidnapped by a member of their family than by a stranger. As with women, the most dangerous place for a child is their own home.

When I was an 11 year-old on Long Island, there was a report that a girl my age named Katie Beers had been kidnapped from a local arcade where I’d attended birthday parties. The perpetrator turned out to be a friend of the family, who kept her locked in his basement for 17 days. When he broke down and confessed to police, Beers was not returned to her mother, but placed in a foster home. I clearly remember the mother’s tearful face plastered across the headlines: “I just got her back and now they’re taking her away from me!” CPS investigators had discovered that, prior to the kidnapping, Beers’s mother had left her for years in the care of her godparents, where she was treated “like a slave” and repeatedly raped by her godfather. Beers writes today that she was ultimately relieved to be placed in foster care and that, had she not been taken out of her home, she never would have graduated high school, let alone college.

When it comes to the legal rights of the child versus the rights of the parent, the court of public opinion will always be fueled by vitriol. Family court, of course, should transcend this, putting reason and research first and foremost. CPS is undoubtedly rife with problems, many due to its miserable lack of funding. But we as a society will never put forth a sincere effort to endow social workers with enough funding to do their job well until we truly value what they do in the first place.

 

* Please note that while my sympathy for the social worker’s perspective is inspired by what I’ve learned from those I know, the views and conclusions expressed here are mine and mine alone.

 

 

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What Do We Want? Visibility!

8 Jun

 

Leaving you this holiday weekend with the brilliant Maysoon Zayid whose TED Talk above includes myriad revelations well worth your time, among them:

One fun fact I learned while on the air with Keith Olbermann was that humans on the Internet are scumbags. People say children are cruel, but I was never made fun of as a child or an adult. Suddenly, my disability on the world wide web is fair game. I would look at clips online and see comments like, “Yo, why’s she tweakin?” “Yo, is she retarded?” And my favorite, “Poor Gumby-mouth terrorist. What does she suffer from? We should really pray for her.” One commenter even suggested that I add my disability to my credits: screenwriter, comedian, palsy…

Disability is as visual as race. If a wheelchair user can’t play Beyoncé, then Beyoncé can’t play a wheelchair user. People with disabilities are the largest minority in the world and we are the most underrepresented in entertainment.

Indeed.

 

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