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.

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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.  

 

 

 

“We’ve Never Lived in Such Peaceful Times”

4 Jan

Time allowed(Image by H. Kopp-Delaney used under Creative Commons 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!

 

 

Who’s Your Family?

28 Dec

(Via)

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

— Holly Hunter in Home for the Holidays

 

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

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

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

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

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

She came up with the idea for [her book] Friendkeeping, she says, while sitting on the George Washington Bridge contemplating the fact that she keeps hearing that the New York City bridges are all going to collapse because they’re not being cared for.

“That’s kind of the same thing with a lot of friendships,” she says, “where you don’t really put that effort in until either you’re celebrating something or something awful happens.” Friendships, like bridges, need upkeep, and as with bridges, sometimes it doesn’t happen and then you’re looking at something that can’t hold you up when you need it to. She realized, too, that it wasn’t an area that was being written about very much in a way that spoke to her experiences. She found a lot of clichés, but not a lot of insight. “Everything that I had read about friendships was always … platitudes about, you know, ‘friends are like flowers and you have to water them’ or whatever. Or the T-shirts with the koala bear and the flower and the ‘Friends are…’.”

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

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

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

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

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

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

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

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

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

 

 
 

Political Correctness Makes You More Creative

21 Dec

(The Atlas of Prejudice by Yanko Tsvetkov)

 

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.

 

 

The Best Picture Books for Preventing Prejudice

30 Nov

(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 Verna 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 ExplainedThese stories get into the specifics of certain disabilities, conditions and diverse backgrounds, but there is no reason they should not be read to every child.

 

 

 

 

 

 

 

 

 

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

 

 

 

 

 

 

 

 

 

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

 

 

 

 

 

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

 

 

 

 

 

 

 

 

 

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

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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.

***

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.

***

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.

 

 

 

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.” Indeed, there is no benefit to engaging in Oppression Olympics; i.e., to arguing 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.

 

 

Are East Germans A Minority?

9 Nov

Ampelmännchen(Image by S. Freimark used under Creative Commons license 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 south-western 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, East Germans certainly have a different history with 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. More Russians had been killed by 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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