Tag Archives: Minorities

Here’s Hoping You’ll Be Hearing about Ali Stroker From More Than Just Me

1 Aug

Perhaps the worst thing about the arts—at the least the performing arts—is how they’ve ended up as the most powerful perpetuator of lookism around the world. From colorism to ableism to fat-shaming, mass media bears a remarkable responsibility for ignoring diverse beauty standards and marginalizing various body types. But the best thing about the arts is the way they dodge objectivity, remaining open to reinterpretation forever and ever.

When you hear “I’m Just A Girl That Can’t Say No” sung by a waif, it sounds like the mid-century acceptance of sexiness in women as long they stay coquettish – that is to say, naïve. When it’s sung by a strong-voiced but conventionally attractive woman, it becomes the anthem of the whore – a classic character whom tradition keeps in high demand but never in high regard. And when it’s sung by a woman in a wheelchair—who is the first actor in a wheelchair ever to make it to Broadway—it’s nothing but empowerment, a sonorous TAKE THAT! to our traditions that automatically deem physically disabled women off the dating market while behind the scenes rendering them seven times more like to be sexually abused in the United States than the general population.

When I read Ali Stroker had become the first actor using wheelchair on a Broadway stage in 2015’s Spring Awakening, my first reaction was, “Wait, what?” The very first full-length musical I attended was a production of Guys and Dolls at my local high school, with a classmate’s brother in the lead as Sky Masterson. He used a wheelchair—I cannot say if it was temporarily or permanently—and the image was presented so matter-of-factly that it imbued in me a deep-seated sense of “Well, why not?” When it comes to possibilities, seeing is believing. But visions can be deceiving and I was deceived into assuming this sort of thing happened all the time. It did not. In 2019, Stroker became the first actor with a physical disability to win a Tony in Daniel Fish’s dark revival of Oklahoma! (This highly acclaimed version originated at Bard College, my alma mater.)

Stroker has spoken at length about what equal opportunity and accessibility in acting truly means. She’s called out Hollywood and Broadway’s addiction to choosing only non-disabled actors to portray disabled characters like Franklin Roosevelt and Helen Keller, likening it to blackface. This week she spoke with the ACLU about the importance of integrating her disability and her wheelchair into any character she portrays without the need for explaining the disability.

I highlight this now because Broadway is about to re-open for the first time since the pandemic and because the worst thing we could do after her achievements is to let Stroker become a one-hit wonder and remain a novelty. Marlee Matlin made history in film and television as the first widely known Deaf actor in the 1980s and 90s, and Google reveals she continues to be the only one of such renown.

Of course, long-lasting change has to be structural. As both Stroker and Anthony Ramos of Hamilton have pointed out, people long marginalized in the arts must be represented not only on the stage but in the writers’ rooms and board rooms if the power imbalance is ever to be corrected and career opportunities for all are to be really, truly equal. That’s why I hope you continue to hear about Ali Stroker and many, many other physically disabled actors until the distinction no longer matters because there are too many to count.

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Loyalty Makes A Family

31 Dec

Snowflake macro: planetary system(Image by Alexei Kljatov used under CC 2.0 via)

 

My absence from the blog since mid-October is because I’ve been on maternity leave. I will not be blogging about this (wonderful, complex) experience any time soon to protect the privacy of all involved. I can say that my views expressed in previous articles about family planning, genetic selection, caregiving, gender policing, and what makes a family haven’t changed much since I’ve become a parent.

I plan to continue to write for the blog (though perhaps not every week) in the new year. I thank you all sincerely for reading and wish you and your family, no matter who that may be, the very best for 2018.

 

 

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Don’t Be A Sucker

20 Aug

 

Leaving you this weekend with original 1947 U.S. War Department film containing the two-minute clip that’s gone viral this week. It’s relevant in the wake of Charlottesville, and of yesterday’s anti-nationalist marches in Boston and here in Berlin. But it’s particularly relevant in its familiarity. The warnings of the dangers of authoritarianism and the assertion that there is no scientific proof of racial differences in character or ability have been repeated countless times in the 70 years since its release. Because so many have claimed otherwise. So often thinking theirs is a new, radical idea.

 

 

 

 

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Recommended Weekend Reading

28 May

Grand Court(Image via Arild Storaas used under CC 2.0 via)

 

Speaking of politicians belonging to historically marginalized groups, here’s some upbeat news from Ireland. It shows that minds can be opened faster than many believe. Our challenge is to keep them opened now and forever.

 

 

 

 

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Never Call Something “The Last Acceptable Prejudice”

21 May

Primitive Negative Art(Image by Primitive Negative Art used under CC 2.0 via)

 

When my family moved from one the most diverse school districts on suburban Long Island to rural Upstate, I was taken aback by the prejudices locals had about the New York metropolitan area. Reactions ranged from a creeped-out exclamation of “Ew!” to concerned questions about crime and pollution. “I despise New York City with a passion!” said one little old neighbor while passing the rhubarb pie during a Sunday get-together. Deeply homesick, I was resentful of the local disdain for what to me had been a wonderful, Sesame Street-like checkerboard of cultures. And I became slowly horrified the more I began to understand that “inner city” and “crime-ridden” were all too often euphemisms for “non-white.”

When I went on to college, however, I was reunited with City kids and professors who were equally open about their disinterest in rural life. They weren’t so much passionately hateful as consistently apathetic, convinced that anything that lay beyond a one-hour radius of Manhattan was more imaginary than real. Jokes about “hicks” often sprang up at the mention of hunting or farming. Many of these urbanites also considered the sheer existence of insects to be a personal affront no citizen should ever have to endure.

Now residing in a major city, I have little patience for bigotry about either setting. The jokes are only ever good when told by those who have actually lived there. And neither group gets to claim that they are the targets of “the last acceptable prejudice.”

Comedian and political commentator Trae Crowder argues just that in The Liberal Redneck Manifesto: “You ever notice how rednecks are pretty much the only subgroup of people in this country that it’s almost entirely socially acceptable to mock publicly?” Similar assertions have been made in reviews of J.D. Vance’s best-selling memoir Hillbilly Elegy. Last month Bill Maher repeated his claim that ageism is the last acceptable prejudice. Columnist Marina Hyde pointed out that The Guardian has declared old, white male-bashing to be the last acceptable prejudice, The Economist has decided looking down on regional accents is the last acceptable prejudice, and Religious Studies professor Philip Jenkins pronounced anti-Catholicism to be the last acceptable prejudice. An article last year in The Independent announced, “Laughing at Dwarfism Is the Last Acceptable Prejudice.”

I understand the frustration behind the sentiment. Dwarfism does not get much attention as a human rights issue. Much of this is due to our rarity in the general population, but also due to the pervasive and enduring belief that our existence is too funny to take seriously. As researcher Andrew Solomon writes in Far from the Tree, “At the mention of dwarfs, [some of my] friends burst into laughter.” As I’ve written before, students in a course studying the power of language told me they would never find the word “midget” as horrifying or upsetting as the N-word or the C-word because their gut reaction was to think of dwarfs as too cute and amusing to be controversial. So yeah. It’s an uphill battle.

But that hardly means that all of this constitutes the last acceptable prejudice. What about the ubiquity of condescension toward the rural poor or the elderly or those who speak in dialect? What about the G-word for Sinti and Roma? What about crude assumptions about adopted children? What about tired tropes about identical twins? What about gingerism? How many self-identified transvestites are out, besides Eddie Izzard? How many of the 1 in 2,000 people born intersex feel safe to be out and proud about their bodies? How many overweight people have never been shamed? And for the all the complaining about PC gone mad, how many racist and sexist jokes and arguments can you find just by sifting through TV shows, Facebook comments, or political party platforms?

The phrase “the last acceptable prejudice” is often used to impart the urgency of a human rights crisis, but it can also connote competition. And it veers dangerously close toward Oppression Olympics. During the 2008 election campaign, Hillary Clinton argued, “Oppression of women and discrimination against women is universal. You can go to places in the world where there are no racial distinctions except everyone is joined together in their oppression of women. The treatment of women is the single biggest problem we have politically and socially in the world.”

Such assertions almost always betray ignorance of the oppression of people other than those you identify with. To argue that there are places with no oppression of racial or ethnic minorities is a sweeping generalization, and to conclusively prove this would be a very tall order indeed. And to argue that the treatment of women is “the single biggest problem in the world” implicitly downplays the problems of xenophobia in places like Denmark, where the current political status quo is committed to gender equality initiatives but also committed to harsh restrictions on immigrants, refugees and religious minorities. 

The only time it is useful to compare oppressions is when you want to highlight another group’s success to prove it a plausible goal for your own. When African-American men and women were freed from slavery in the U.S., suffragists pounced on the opportunity to demand why only African-American men and not women would be granted the right to vote. Both the first and second women’s movements in the U.S. stemmed from the abolitionist and civil rights movements, and the gay rights movement stemmed from both. Transgender, queer, and intersex rights movements have advanced from that, as have others addressing widespread prejudice about birth, blood and the human body. 

Yet divisive bigotries and competitive thinking survive within these movements and thrive when Oppression Olympics is accepted as fair play. Solidarity is threatened by that, which is why we would do well to agree that inaccurate, superlative phrases like “last acceptable prejudice” harm more than they help.

 

 

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Blaming the Election on the Minority Rights Movement Is Flawed and Dangerous

20 Nov

 

It’s a trick you’re bound to encounter if you work with issues of diversity: Someone comes along and insists that he’s got nothing against any particular minority—in fact he’s all for progress!—but lots of people feel left out by diversity awareness so people should really stop talking about it. Now. I was told on Election Night by a voter that bringing up racism or homophobia is “divisive.” Mark Lilla writes in the New York Times this week that an over-emphasis on minority identities at schools and universities is what has caused the backlash seen in the recent U.S. election. 

This argument pushes the fallacious color-blindness approach to human rights, calling on us to “focus on our commonalities and not our differences.” Most people our society designates as minorities would love to be able to do this. We would be thrilled to live in a world where your race, nationality, gender, physical ability, sexual orientation, cognitive ability and appearance are considered no more remarkable than whether or not you’re right-handed or left-handed. Such a world is the final goal in the struggle for social justice. But the insistence that the only way to achieve such a world is to start pretending we live in it already demands we kindly stop filing complaints of inequality, underrepresentation, harassment and abuse.    

Dr. Michael Ain says in the documentary Dwarfs: Not A Fairy Tale, “When you wake up in the morning, and you do what you have to do, you don’t think you’re different. When I woke up this morning to go to work, I don’t think, ‘I’m short.’ It doesn’t approach me when I look in the mirror. It doesn’t cross your mind until someone makes it apparent.” He then talked about how many doctors tried to block his efforts to apply for medical school on the basis of his physical appearance. “The first guy I interviewed with told me I couldn’t hold the respect of my patients because of my stature,” he reports.

Many of the proponents of the commonalties-not-differences approach are noble in their intentions if naïve in their conviction that such cases are tremendously rare and best left viewed as isolated incidents. But other proponents are simply irritated when attention is afforded to injustices other than those they personally have suffered. I have encountered many arguments placing blame on the “entitled, whining” attitude plaguing minorities, who are too obsessed with their own victimhood to learn about hard-work and self-reliance. Nine times out of ten, supporters of this view then argue that straight, white men actually have it harder than anyone else thanks to the social justice movements of the past 50 years. Which begs the question: Wait, who’s really acting like a victim here? Who’s blaming others for their lot in life?

Minority rights groups contain many people also guilty of such self-centeredness: Blacks who suppress Jews, Jews who suppress women, women who suppress trans citizens, etc., ad nauseam. Which is why it is crucial to reiterate that if we’re going to support the rights of one group, we have to support them all. Your identity matters far less than your willingness to think beyond your personal experience and understand the diverse sorts of harassment and Othering experienced by citizens of all identities.

And speaking of commonalities, I am done reading lectures from professors, pundits and princess experts that claim those of us in the minority rights movements are elitist and don’t understand the “white working class.” People who could be lumped into the “white working class” include many of my friends and family. Some of them join overly educated hard-liners in blaming immigrants and minorities for society’s problems, and some of them are leading the discussions on human rights. Some of them are massively insecure and will lash out if they have to hear anything about xenophobia, and some of them listen to diverse points of view better than anyone of any political conviction. And a tremendous number of them are LGBT, disabled, immigrant and/or non-Christian. Many of them are fully accepted by their peers for who they are. Many are not. Reducing human rights discussions to attacks on—or defenses of—“rednecks” ignores and insults the diversity of that group. Human rights discussions must always cross class lines. Those of us who base our work on intersectionality have been saying this for decades.

Writing and teaching about diversity awareness can be exhausting when even the classiest behavior is accused of divisiveness. Martin Luther King, Jr. knew this and so does Brandon Victor Dixon, the star of Broadway’s smash hit Hamilton, who made his now famous appeal to the incoming vice-president of the United States on Friday night. See the video above or the transcript here:

Vice-president elect Pence, I see you walking out, but I hope you will hear us, just a few more moments. [Some audience members begin to boo.] There’s nothing to boo here, ladies and gentlemen. We’re all here sharing a story about love. We, sir, are the diverse America who are alarmed and anxious that your new administration will not protect us, our planet, our children, our parents, or defend us and uphold our inalienable rights. We truly hope this show has inspired you to uphold our American values and work on behalf of all of us. All of us. We thank you for sharing this wonderful American story, told by a diverse group of men and women of different colors, creeds and orientations. 

Critics on both sides of the political spectrum are reprimanding Dixon for making this plea. After all, isn’t Pence accepting all Americans by attending a play with a diverse cast like Hamilton? 

As many others have pointed out, Pence is a politician recently elevated to a position of tremendous influence who has given many Americans good reason to worry that his acceptance of them does not extend much beyond tolerating their presence on a stage. He has successfully fought for the right for businesses to discriminate against LGBT customers and is an advocate of gay conversion therapy, which has been widely condemned as psychologically damaging by medical professionals. In his 2000 bid for Congress, Pence sought to defund any AIDS support organization that did not urge patients to repress their sexual orientation. 

Both stars of Hamilton are openly gay and one is HIV-positive. In a just world, they would have no reason to worry about their health under any presidential administration. But we do not live in that world yet, and Dixon’s appeal to Pence was as justified as it was polite.  I implore anyone who thinks otherwise to try changing their sexuality before they make a call for an end to diversity awareness.

 

 

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It’s Dwarfism Awareness Month!

2 Oct

x-ray of a dwarf(Image by Lefteris used under CC 2.0 via)

It’s October, so you know what that means. Here’s one of the most popular pieces from the Archives:

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Garden gnomes are frawds.

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

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

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

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

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

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

 

 

Originally posted in October 2013

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On Using the “I Have A Friend/Sister/Coworker Who Is A…” Argument

29 May

light parade EXPLORED! (Image by Ashley Norquist used under CC 2.0 via)

It was one of those conversations where you bare all because you feel you have nothing to lose. A recent, unexpected statement about my dwarfism voiced to me by someone in a position of power had brought me to tears.  Three decades of being insulted both directly and behind my back by people I know, and indirectly by many of my heroes—from John Lennon to Stephen Colbert—had left me thinking that I had heard it all and was above it all. But this had left me shaken. My friend Dee, who does not have dwarfism, cracked open two beers and examined with me the best way to deal with the insidiousness of certain prejudices.

Those of us with achondroplastic dwarfism are roughly 1 in every 40,000 people, but Dee himself has heard demeaning comments about dwarfs with far greater frequency. When confronting such remarks, he argued:

I wouldn’t use the “I have a friend who is a dwarf” argument. Because it would sound like I only care about the issue because I have a friend who could be hurt by it. It doesn’t convince other people because it doesn’t force them to examine why the idea is cruel. It just makes them think, “Well, I’ll be sure not to say that around him anymore because he’s touchy about it because of his friend…” Instead I play dumb. I keep asking them, “Why? I don’t get what you’re saying.” And they can never explain why.

I had never considered this before. Many people use the “I have a friend who is…” argument in the hopes that this might illustrate to the ignorant that such people are everywhere – that they are our friends and siblings and partners, not just oddities we get to abstractly pick apart in headlines and on TV. Yet that’s not what others hear.

And members of a given group often do not appreciate exaggerated claims of expertise on the issue via association. Madonna and Bill de Blasio, both white parents of people of color, have been lambasted in the past year for publicly cracking black jokes that fell flat. NPR’s Karen Grigsby Bates explained it best when she wrote:

Even though you’re dearly loved by and even related to black people, you aren’t black. You are NBA — Negro By Association — and that gives you props for knowing the culture and lots of little intracultural folkways. But it doesn’t give you a get-out-of-jail card for using phrases like C.P. Time. Especially in mixed company, in public.

The Kinfolk Kollective has argued that white parents of adopted black children must always be ready and willing to understand a perspective they simply do not have and to stand corrected when necessary. When such a willingness is absent, the issue is not at all about opening minds but the desire for insider expertise.

And “I’ve dated someone who is…” is not a solid argument—neither in defending the minority in question nor one’s own character—because simply having dated someone is no guarantee of true understanding. Not only are exes the last kind of people we tend to regard fairly, but so many people of minority status must face the risk that their date sees them as little more than a fetish – as in “I’ve always wanted to f*** a little person!” 

And yet, in order stop rampant prejudice in its tracks, these issues must be talked about by those who are not experts. Journalists and writers like myself speak on behalf of all sorts of groups without belonging to them. The results are, of course, mixed.  

In the film, Stories We Tell, producer Harry Gulkin argues that the truth about any issue cannot be found by giving equal weight to the perspectives of everyone involved in any way. There are, he argues, three circles of knowledge: The first, innermost circle comprises the people who are the players involved in the issue, the second comprises those who are directly affected by the players and their actions, and the third comprises those who tangentially know about it because they have heard accounts from those in the first or second circle. This theory applies easily to the experience of someone considered Different by their society and the other lives affected by the attention society affords it. Using the example of disability:

First Circle: The person who is disabled

Second Circle: Their parents, siblings, partners, closest friends (who are not disabled)

Third Circle: Relatives, friends, coworkers (who are not disabled)

The people in the Third Circle are most at risk for spreading misinformation, regardless of intention. It is noble, for example, to fight the good fight in the bathroom debate because you know someone trans whom you really like. But it doesn’t mean you won’t misinterpret their thoughts and feelings, or give in to temptation and reduce some of their story to gossip.

The people in the Second Circle, as Madonna proved, are also at risk for such blunders. And too many partners, close friends and immediate family members err by letting their darkest fears and most selfish impulses lead them to say or do something terrible to the person in the First Circle. But on the flipside, much of the best work in minority rights has been produced by partners and parents of frequently marginalized people. And the experiences of the caregiver and their place in society is another kind of knowledge altogether.

Returning to Dee’s approach, the goal should not be about personal relationships and expertise, but about the most effective way to open minds and halt the spread of misinformation. 

Meanwhile, the More-Enlightened-Than-Thou game should be restricted to the smallest of circles. This was perhaps best elucidated to me by my friend Bill. Shortly after having come out, he mused to me, “I’ve decided you’re more open-minded than I am.” 

“Why?” I asked.

“Because you have lots of friends who are gay.  I only have one friend who’s a dwarf.” He took a sip of his Coke and smiled out of the corner of his eye. “And I’m thinking of dropping her.”

 

 

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The Best Picture Books for Preventing Prejudice

13 Dec

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

From the Archives, one of the blog’s most popular articles:

 

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 5th 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.

***

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 American 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.

 

 

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Content Warnings and Microaggressions

20 Sep

Grunge Warning Sign - Do Not Read This Sign

(Image by Nicolas Raymond used under CC license via)

 

There’s a heated debate going over at The Atlantic over trigger warnings and microaggressions. For those less familiar with online minority rights debates, trigger warnings originated as labels for video or texts depicting graphic violence, often sexual, that could be triggering for survivors of assault suffering from PTSD. They have since evolved into “content warnings,” used to label any video or text containing arguments, comments, humor or images that marginalize minorities. I most recently ran into one preceding a beer ad in which two brewers tried to joke about never wanting to have to do anything so humiliating as dressing in drag in the red-light district in order to earn money.

Jonathan Haidt and Greg Lukianoff have argued that content warnings have led to “The Coddling of the American Mind,” a culture of silencing, wherein too many are afraid to initiate dialogue on these issues, lest they offend. They criticize restrictive speech codes and trigger warnings, and suggest universities offer students free training in cognitive behavioral therapy in order to “tone down the perpetual state of outrage that seems to engulf some colleges these days, allowing students’ minds to open more widely to new ideas and new people.”

“Microaggressions” is a term invented in 1970 by Harvard professor Charles M. Pierce to refer to comments or actions that are usually not intended as aggressive or demeaning but nevertheless do contribute to the marginalizing of minorities. Examples would be certain physicians being addressed as “Nurse” at the workplace. Or nurses, secretaries, cashiers, and storage room workers constantly hearing the widespread Western belief that low-skilled jobs deserve a low degree of respect. Or men still being expected to prove their worth through their career and never their emotional fulfillment. Or lesbians being asked if they’ve had “real sex.” Or anyone hearing from magazines, sitcoms or even loved ones that body types like theirs are something to avoid ending up with or hooking up with.

Microaggressions are the essence of insensitivity and they highlight the widespread nature of many prejudices about minorities. I analyze them all the time on this blog, without labeling them as such. Finding blogs that feature them in list-form can be done with little effort.

Citing a sociological study by professors Bradley Campbell and Jason Manning, Connor Friedersdorf has argued that calling out microaggressions on social media sites has led to a culture of victimhood, wherein the emotions of the offended always matter more than the perpetrator’s intentions. Victimhood culture is “characterized by concern with status and sensitivity to slight combined with a heavy reliance on third parties. People are intolerant of insults, even if unintentional, and react by bringing them to the attention of authorities or to the public at large.”

Cue the overemotion. Simba Runyowa rightly rebuts that many of Friedersdorf’s examples of hypersensitivity are cherrypicked, but then goes on to deny that anyone would ever want to be seen as a victim. (Not only do most petitioning groups—whether the majority or the minority—claim to be the victim of the other side’s moral failings and undeserved power, but it appears he has never tried to explain what it’s like to have a rare condition, only to be interrupted by the insistence, “I think I have that, too!”) On the other side, Haidt, Lukianoff and Friedersdorf have attracted plenty of support from those who are only too happy to believe that college campuses and the blogosphere today are ruled by the PC police, rendering such places far worse than Stalinist Russia.

I rarely issue content warnings on videos or quotations or any examples of bigotry I analyze on this blog. My primary reason is that a majority of the content we consume every day is arguably misogynistic or heteronormative or ableist or racist or classist or lookist. This does not at all mean that we should not address those problems, but demanding “warnings” on whatever has marginalized me leaves me open to criticism for not doing the same for all the other injustices I may not see.  As both a Beatles fan and a social justice blogger, I will always prefer to read or hear a comprehensive critique of John Lennon’s ableism than to see warnings on his biographies.

And I don’t label microaggressions as such because I agree with Friedersdorf that the word seems at odds with its definition. Insensitivity can be very hurtful. It can contribute to feelings of alienation by functioning as a reminder of how millions of people might think of you. But it is not aggressive. Highlighting, questioning and debating ubiquitous prejudices, stereotypes and traditions is crucial to human progress. Mistaking ignorance for hostility, however, is an obstacle to it.

Would it be accurate and productive to post something like this?

Microaggression: Having to hear yet another parent talk about how thrilled they are to have been able to give birth “naturally.”

(Avoiding C-section is never an option for women with achondroplasia like me.)  And would it be accurate and productive to something like post this?

Microaggression: Having to hear yet another childfree blogger brag about how great it is to have the time and energy to do things I’ll never be able to do like hiking or biking, let alone if I have kids.

Would it be more practical to tweet such complaints rather than pen an extensive article about the intricacies of the problem because few have time to read the particulars of considering parenthood with achondroplasia? Would posting them on a site featuring microaggressions serve as a much-needed wake-up call, convincing the perpetrators to see the issue from my perspective, or would it put them on the defensive? Would it spark dialogue or shut it down? Are the comments that marginalize my experience veritably aggressive? Feel free to share your thoughts in the comments.

But whether we think people on either side of the majority vs. minority debates are too sensitive or insensitive, we should be aiming for dialogue over exclamation points.

 

 

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The Problem of Dwarfs on Reality TV

30 Aug

voyeurism(Image by Natasha Mileshina used under CC license via)

The new television schedule has kicked off both in the U.S. and the U.K. with the usual plethora of reality TV shows and the usual high number of shows zeroing in on people living with dwarfism: The Little Couple; Seven Little Johnstons; Our Little Family; Little Women of L.A.; and the grandfather of them all, Little People, Big World. Besides the patronizing titles and taglines, the shows feature factoids about dwarfing conditions and lots of melodrama thrown in with some social critique lite.

Having handed my life story over to a journalist for the umpteenth time this past spring, my husband and I recently discussed how important it is to be able to trust that your storyteller will not exploit you for entertainment value. It takes a perceptive mind and an agile hand to elucidate dwarf-related topics like bio-ethics, self-image, political correctness, beauty standards, harassment, adoption, job discrimination, pain management, and reproductive freedom—all of which could and have filled scholarly journals and books—via mere sound bites. At one point in the conversation my husband paused and said, “Just to make sure we’re on the same page, honey – we’re never appearing on reality TV. Right?”

I laughed and nodded reassuringly.

He was not unwise to worry.

Reality TV offers their subjects fame at the expense of their dignity. Documentaries and news features also carry a risk for this, but one element that distinguishes reality TV from journalism is the rock-solid guarantee of fights, tears, and bad-mouthing. For some participants there may be gratification in the knowledge that millions of viewers are interested in you enough to want to watch how you live every waking minute of your life, but it comes with the unspoken fact that they’re also waiting for you to slip up so that they have a good story to hash out among their friends and in gossip columns.

We are all vulnerable to voyeuristic temptation and the media knows this. It’s why it offers us up-close shots of survivors’ tears as soon as possible, and it’s why we click on them, despite recent and compelling arguments that this is socially irresponsible. The message of reality TV seems to be that no one really ever moves beyond middle school jealousy and superficiality, so we might as well let it all hang out. The better angels of our nature be damned.

Years ago, Cathy Alter mused via a glib article in The Atlantic about her rather bizarre obsession with dwarf reality shows. The greatest revelation came from her therapist, who explained, “I think regular size people feel more secure as people when they can observe midgets… I think that contrast is validating because we tell ourselves that at least there are people who have it worse, because they are small… We need the midgets to feel normal.”

This confirms what I have always suspected and, admittedly, feared. That millions of people are watching under the guise of wanting to understand difference while ultimately enjoying getting to look at lots of juicy pictures of freaks.  This is why these sensationalist shows do so well, while earnest, in-depth documentaries like Little People: The Movie remain out of print. Before the birth of reality TV in the late 90s, dwarfs were most often featured on daytime talkshows, alongside episodes featuring people caught in affairs and people who believed they were the reincarnation of Elvis.

As often the only dwarf in a given person’s circle of acquaintances, I have been told by many how touching they find these shows. How wonderful it is to see that “dwarfs are just like everyone else!” I can accept that there will probably always be a market for shallow entertainment that twists tragedy into soap opera and reduces the complexities of life into easy-to-swallow sentimentality, no matter how far society progresses. Tabloids will continue to exist because millions of people—including kind, intelligent people I know—will continue to buy them. In this regard, the individual shows are not so much problematic as is the fact that they are where TV viewers are most likely to see people with dwarfism.

Actress Hollis Jane, who called out Miley Cyrus last year for exploiting performers with dwarfism as sideshow acts, explained this summer why she turned down a contract to appear on Little Women of L.A.:

Other than Peter Dinklage, Tony Cox (Bad Santa) and Danny Woodburn (who played Mickey Abbott on Seinfeld), it’s nearly impossible to name successful actors and actresses who also happen to be little people. People get upset about the Kardashians representing women in America but for every Kardashian there is a Meryl Streep, a Natalie Portman, or a Zoe Saldana. Little people don’t have that. I have wanted to be an actress since I was in first grade and I played the angel, Gabriel, in a nativity play. I held firm to this dream until sixth grade when a parasitic thought crawled into my head and told me that I would never be an actress because I was a little person. I realized that since there was no one on television who looked like me, it meant that there would never be… When Game of Thrones premiered, my world was rocked. Peter Dinklage was doing the impossible. He was being taken seriously as an actor without exploiting his height for shock value or a joke. The night he won his Emmy, I cried for an hour.

She adds, “I have nothing against the women on these reality shows. There is a part of me that thinks it’s great we have little people on TV in any capacity…but I also think we deserve more than that.”

If the general public truly believed this, if reality TV viewers truly saw their dwarf subjects as their equals rather than curiosities, then we would see a lot more dwarfs as newsreaders and game show hosts, starring in sitcoms and dramas, playing the lead detective and the lovely heroine and the hero facing impossible odds to save the day. Perhaps that day will come, but for now few people can name a single dwarf actress and many dwarfs get told that they look like “that guy on the show about the little people.” That’s our reality.

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Happy Birthday, ADA!

26 Jul

 

This week marks the 25-year anniversary of the passing of the Americans with Disabilities Act. As others have noted, the law was ground-breaking not only because of its international ripple effect, but because it recognized disability not as an issue of health, but of human rights.

Author of the bill, Robert L. Burgdorf, Jr. writes in The Washington Post why this was so necessary:

People with disabilities were routinely denied rights that most members of our society take for granted, including the right to vote (sometimes by state law, other times by inaccessible polling places), to obtain a driver’s license, to enter the courts and to hold public office. Many states had laws prohibiting marriage by, and permitting or requiring involuntary sterilization of, persons with various mental or physical conditions, particularly intellectual disability, mental health conditions and epilepsy. A number of states restricted or denied the right of people with mental disabilities to enter into contracts. Several U.S. cities, including Chicago, Columbus and Omaha, had what became known as “ugly laws” that banned from streets and public places people whose physical condition or appearance rendered them unpleasant for other people to see. These laws were actually enforced as recently as 1974, when a police officer arrested a man for violating Omaha’s ordinance.

In some instances, discrimination threatened the very lives of individuals with disabilities: Lifesaving medical treatments that would routinely have been made available to other patients were denied to patients with disabilities; in 1974, the New York Times cited an estimate that unnecessary deaths of babies with disabilities in the U.S. resulting from withholding of medical treatment numbered in the thousands each year.

Things have improved substantially, which is cause for celebration. But not complacency. Which is why NPR’s article “Why Disability and Poverty Still Go Hand-In-Hand” is well worth your time, as is the above TED Talk by the late, great Stella Young, whose unexpected death last winter was a tremendous loss to the disability rights movement and to anyone who enjoys a good dose of sarcasm with their social critique.

 

 

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Difference Diaries Wants to Hear from You

19 Jul

Copyright Difference Diaries

 

I have recently become the Director of Educational and Multimedia Outreach at the Difference Diaries, and today marks the launch of the Difference Diaries Blog. We want submissions and we want them now.

The Need. This week Freeburg High School in Illinois jubilantly voted down a petition by Little People of America to retire their school mascot, the Freeburg Midgets.

Such incidents are hardly isolated. Dwarfs rarely make the news, and when we do, we often wish we didn’t. Two summers ago Slate magazine, one of my favorite socio-political periodicals geared at young adults, kicked off a blog about Florida with an opening article called, “True Facts About the Weirdest, Wildest, Most Fascinating State.” Among the facts that apparently render the Sunshine State weird are the python-fighting alligators and “a town founded by a troupe of Russian circus midgets whose bus broke down.” On the day of its release, Slate ran the article as its headline and emblazoned “A Town Founded By Russian Circus Midgets” across its front page as a teaser.

Face-palm.

Here’s the thing about dealing with all this. You get used to it, but not forever and always. Sometimes it rolls off your back, sometimes it hits a nerve. This time, seeing a magazine as progressive as Slate brandish RUSSIAN CIRCUS MIDGETS on its front page while leaving disability rights out of its social justice discussion brought me right back to college, where friends of friends called me “Dwarf Emily” behind my back and someone else defended them to my face. Where classmates cackled about the film Even Dwarfs Started Off Small—“because it’s just so awesome to see the midgets going all ape-shit!”—but declined my offer to screen the documentary Dwarfs: Not A Fairy Tale. Where a professor was utterly outraged that her students didn’t seem to care about immigration rights or trans rights, but she never once mentioned disability rights. Where an acquaintance asked to borrow my copy of The Curious Lives of Human Cadavers, but awkwardly turned down my offer to lend her Surgically Shaping Children. Where roommates argued vociferously that they would rather be euthanized than lose the ability to walk. Where jokes about dwarf-tossing were printed in the student newspaper.

I won’t go into certain crude comments that involved me personally, but I will say that when a friend recently, carefully tried to tell me about how shocked he was to find a certain video of dwarfs in a grocery store, I cut him off and said, “Lemme guess, it was a dwarf woman porn video? That’s one of the top search terms that bring people to my blog.”

This is not to ignore all those I’ve met who, despite their lack of experience with disability, ask carefully constructed questions and consistently make me feel not like a curious object but like a friend who is free to speak her mind about any part of her life experience. And some young adults are doing awesome work for disability rights and awareness. But when a journalist and mother of a disabled twentysomething recently said to me, “No one wants to talk about disability rights – it’s not seen as sexy enough,” I knew exactly what she was talking about.

Maybe this is just a matter of my growing up, leaving the cocoon of childhood and finding out how uncaring the world can sometimes be. But ableism among young adults in the form of silence and/or sick fascination is a lot more prevalent than many would like to admit. And why does it have to be? Are physical differences truly not sexy enough? Is it because we associate disabilities, diseases and related issues—like caregiving—with older people and with dependence? Dependence is usually the last thing to be considered cool. But does it have to be?

The Means. As a non-profit organization, Difference Diaries aims to ignite ongoing conversation that will contribute to better lives for those living with defining difference as well as friends, families, and perfect strangers who “just never thought about it.” The young adults who share their stories offer real insights and an opportunity for viewers and readers to know a little more about “what it’s like.”

We focus on conditions as diverse as the individuals living with them including: cancer, hemophilia, dwarfism, sickle-cell anemia, albinism, facial deformity, blindness, HIV, amputee, hemangioma, vitiligo, diabetes, renal disease, Crohn’s disease, cystic fibrosis, cerebral palsy, OCD and more.

This is why we want to hear from you. We are seeking blog submissions about living with Difference as a young adult. Prospective bloggers should consider: What does Difference mean to you? What is your personal experience of being Different? What has to be explained most often at work, school, out in public? What would be the most helpful thing for people to know about your Difference? How would you like to see society improve in how it handles Difference?

Send us your submissions via e-mail to info[at]differencediaries.org

 

 

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Why Do Names for Minorities Keep Changing?

14 Jun

midget not wanted(Image by CN used under CC 2.0 via)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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What Makes A Story “Depressing”?

24 May

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

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Ireland Votes on Marriage Equality – While Snarking about Midgets

17 May

 

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

***

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

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

“What, love?” she asks, confused.

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

“What you got against midgets?” she demands.

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

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

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

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

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

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

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

He smiles, rolls his eyes and nods knowingly.

They both start to laugh.

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

Rory rolls his eyes and shakes his head.

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

“Mammy!” Rory scolds.

***

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

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

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

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

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

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

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

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

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

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

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

 

 

 

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Is It Wrong to Give Your Kid an Extraordinary Name?

26 Apr

Hello My Name Is... (Image by Alan O’Rourke of workcompass.com used under CC 2.0 via)

 

Every coupled friend I have here in Germany is, as of this year, a parent. And looking upon the names bestowed upon the new generation, I must say I like them all. Or at least, I don’t hate any of them. This is impressive when considering that, if my partner and I ever want to get into a fight, we simply start discussing names we would hypothetically pick for a child. Just give us five minutes and soon we’ll be shouting, “Bo-ring!” “Flaky!” “Hideous!”

And then we run up against the unanswerable question: Is it harder to have a mundane (a.k.a. boring) name or an unusual (a.k.a. weird) name?

While I enjoy the sound of my own name—as many if not most people do—I haven’t enjoyed seeing Emily end up in the top ten of the most popular U.S. baby names for the past three decades. Emily was the first name a sociologist in Freakonomics came up with when asked to list “typical white girl names” in the U.S. One hot summer in Upstate New York, I worked in a room with five other Emilys, all my age. One friend had so many Emilys in his life that he added permanent descriptors to differentiate us. (I was “Home Emily.”) Matt Groening was definitely on to something when he listed meeting-another-kid-with-your-name as one of childhood’s greatest traumas.

This is why I see the appeal of extraordinary names. After all, the whole point of giving a child their own name—as opposed to, say, calling them Person or Daughter No. 1—is to distinguish them from others. To have them, and not four other people, look up when you call them. In my years as a school teacher, I had a much easier time remembering Xenia, Letitia and Suma than Tom, Jim and Kate. I’m also grateful to parents who opt to avoid the sound-combinations that happen to be trending, reducing the likelihood of my having to remember which student is Julie and which is Julia, or whether the boy in front of me is Leon, Leo, or Leonard. I regularly confuse Kristen Stewart and Kristin Scott Thomas, but I’ll never forget Quvenzhané Wallis till the day I die.

Black Americans are renowned for frequently giving their children names that sound vaguely African with modern flourishes, from Baratunde and Beyoncé to Kwame and Malia. I spent a good deal of my childhood on Long Island and in Baltimore where I had classmates and friends named Chiwanna, LaTaesha, Zeeyaré, and Teyonté. South African comedian Trevor Noah has poked fun at how very not African such names sound where he comes from, but the attempt to reconstruct cultural ties, however inaccurate, is perhaps most understandable in the context of those whose ancestors were violently removed from their culture:

 

 

Looking down on extraordinary names can have xenophobic undertones. After all, the pre-1960s model of blending into middle class America resulted in immigrants named Wei-Li and Helmut swiftly transforming into Winnie and Herbert. An insistence that it’s cruel to name your child something unusual suggests something wrong with diversity or being a minority.

“That kid is gonna get teased so bad!” is the usual response to an extraordinary name. But wouldn’t it be better to teach your child how to react to schoolyard teasing with self-confidence and empowerment rather than avoid anything that might make them remarkable? Studies show the Boy Named Sue Effect is real. That is, my friends Lucrezia, Baldur and Bronwyn are more likely to have strong and sturdy personalities than my friends Matt, Matt and Matt.

As one psychologist explained in The New York Times:

Researchers have studied men with cross-gender names like Leslie. They haven’t found anything negative — no psychological or social problems — or any correlations with either masculinity or effeminacy. But they have found one major positive factor: a better sense of self-control. It’s not that you fight more, but that you learn how to let stuff roll off your back.

Then again, some endeavors to be different do seem less defensible than others. As noted before, a study in 2010 showed that teachers here in Germany are more likely to give lower grades and presume unruly behavior of kids named Cindy, Mandy or Kevin because they are assumed to come from anti-intellectual, anti-social homes. These names are common among children born in the Eighties and Nineties in the former East Germany where Hollywood had a strong influence, Kevin having boomed right after the international success of Home Alone. Smashing stereotypes about the people from behind the Iron Curtain is admirable, but destigmatizing Macauley Culkin feels less necessary.

And what about the potential for sounding pretentious? German punk singer Nina Hagen named her daughter Cosma Shiva after having allegedly seen a UFO while pregnant. The most compelling argument against picking a name from a distant culture I’ve heard comes from a fellow Long Islander with an Indian first name and a Jewish surname given by her Jewish dad and mother whose parents hail from Chennai:

I don’t think it’s offensive when a white couple reaches around the world for a name. I think it’s tacky. If you want to name your kid something foreign and exotic, then get to know someone foreign and exotic, and marry them. Otherwise, stick to what you know well. You’re trying to sound deep and yet your relationship to the culture isn’t deep. It’s shallow.

Not to immediately insult Dhani Harrison, but she has a point.

Having no cultural context for a name can be very problematic. What if the foreign name you’ve picked “just because it sounds nice” is widely known abroad as the name of a brutal dictator, infamous celebrity, or literary villain? If a WASPy American couple stumbled upon “Mohammad” or “Fidel” for the first time and decided to give it to their son just for the sound of it, they would be looked upon with a good deal of suspicion. In Amy Tan’s The Kitchen God’s Wife, a man returning home to China after a trip to the U.S. tricks his rival into taking on the name Judas when dealing with Western businessmen, promising him that it is the name of very well-known, powerful historical figure.

And controversy aside, phonetics often don’t translate easily across cultures. Not only are my favorite English names often butchered by German accents, but most of the German names that sound loveliest to me and my American family elicit horrified looks from my contemporaries in Berlin. (Apparently “Hannelore” is one of the ugliest names anyone could ever think of in Germany today.)

This proves, however, that it is often nothing more than a matter of taste.  One person’s tacky is another person’s terrific, and there is little we can do to change that.

 

 

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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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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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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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