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Another Reason Why American Students Should Protest Campus Speakers If They Want To

23 Jul

Protest(Image by Jorgen Carling used under CC 2.0 via)

 

Academics across the political spectrum are debating whether or not students should protest speaking events on their campuses by controversial figures like Charles Murray, Bill Maher or Milo Yiannopolous. Murray tried to prove in his bestseller The Bell Curve that black people are genetically predisposed to lower intelligence than white people. Maher has made no effort to differentiate between Muslim extremists and all Muslims in political discussions on his TV show Real Time. Yiannopolous is a professional Internet troll who says to anyone who finds his arguments upsetting, “Fuck feelings.”

Lisa Feldman Barrett argues in The New York Times that Yiannopolous should be protested and rejected by academia because “he is part of something noxious, a campaign of abuse. There is nothing to be gained from debating him, for debate is not what he is offering.” She puts Charles Murray, however, in a different category. Jonathan Haidt and Greg Lukianoff argue back in The Atlantic that any campus protest of any speaker is an attack on free speech and contributes to a dangerous culture of victimhood that coddles college students. Both articles make interesting points. Both articles miss the point as to why I primarily believe students should protest any or all of these speakers.  

Unlike students here in Germany, where higher education is free, college students in the U.S. are not mere pupils who have been accepted based on their academic performance with the purpose of engaging in profound discourse that benefits both themselves and the academic community. College students in the U.S. are customers that go into sometimes life-long debt in order to purchase the product that is their four-year education. UC Berkeley, where students protested Bill Maher as a commencement speaker, currently charges $29,784 for one year of tuition, room and board. A year at Middlebury College, where Charles Murray was met with violent protests, right now costs $63,917. Google why tuition in the U.S. has skyrocketed in the past four decades and you will find countless theories. But the fees are real as is the fact that guest speakers are not only invited but paid by these colleges. It is thus perfectly reasonable for students to express their opinion as to how their tuition money is being spent, just as it is perfectly reasonable for consumers to launch boycotts against companies that engage in unethical practices or belittle minorities.

Furthermore, these guest speakers demand exorbitant speaking fees. Charles Murray charges between $20,000 and $30,000 for a single speech. Bill Maher charges between $50,000 and $100,000 per event. I was told by a staff member at my alma mater that his  department could not afford one speech by a well-known theorist in the field of language. His fees were lower than Murray’s, let alone Maher’s.

My college education was invaluable. And academia confronts, examines and debates controversial ideas that can be deeply upsetting to many people every day: ideas like when does life begin and end, who can be considered human, is love or attractiveness quantifiable, should blasphemy be considered hate speech, should we breed shorter people to save energy, etc. But these debates alter when someone who has made a career out of arguing for one side is paid an enormous sum to give a speech about it. Aspiring teachers, social workers, and librarians have a right to say whether they are willing to go into life-long debt so that a celebrity can earn between $20,000 and $100,000 in one afternoon on campus by firing off some rants. They have a right to say whether the hosting professor should perhaps instead use college funds to pay $25 for one of Murray’s or Maher’s books and photocopy a chapter for his class, where the ideas can then be debated over a few days if not weeks.

That is precisely how I first encountered Murray’s argument that black people are genetically predisposed to a lower IQ. My genetics course culminated with analyzing The Bell Curve and discovering how scientifically flimsy Murray’s evidence is. This absolutely endowed me with a detailed understanding of how inane the colonial belief in separate races is and prepared me to confront those who still cling to it. I am very glad for that. But would I want the tens of thousands of dollars spent on my education to have helped contribute to the wealth Murray has accrued from reiterating this intellectually weak but attention-grabbing idea? The same class addressed the fact that the eugenics movement both resulted in the sterilization and deaths of thousands of disabled people but also contributed intellectually to the early stages of genetics as a science. As someone with achondroplastic dwarfism, I found it important to learn about that. But should I have stood idly by were the college to invite and pay a eugenicist to give a speech? How about a Neo-Nazi?

That is an ethical quandary at best. One that warrants debate. And peaceful protest is a form of debate, an exercising of the right to freedom of speech. 

Not all protests on college campuses are on the right side of the issue. The dumbest demonstration I ever witnessed in my student days was against the ban on smoking in the cafeteria. This migraine-sufferer was ever so grateful to see the fumes disappear. But I wasn’t enraged at the idea of the smokers voicing their dissent. I walked by their protest without bothering to comment and later mentioned my disagreement when asked. 

I was sympathetic the following year when students held a peaceful but angry protest of the new performing arts center, which was designed by Frank Gehry and cost $62 million. Some of my friends on campus were there in part thanks to scholarships but nevertheless had to work 65+ hours a week in the summer to cover the rest of tuition. They showed up at the protests, arguing that the $62 million should have instead been spent on scholarships. Despite what many like to think of most campus protesters, they were not spoiled children shielded from dissent and far too used to getting exactly what they want in they life. They were more aware than most of the way money works in the world – a world their college claimed to be preparing them for.      

 

 

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.

 

 

A Mother’s Day Tribute to a Sullivan Woman

14 May

Barbara Sullivan 1975

 

I don’t remember when I came to the conclusion that being a dwarf meant I absolutely had to care about all forms of discrimination and social injustice. It seemed to always be there. I remember at age 19 stumbling upon some closed-minded corners of the Internet and promptly firing off mass e-mails reverberating with shock and outrage about the prevalence of homophobia in the dwarf community – a community that I believed, if any, should be particularly sympathetic to the concerns of those persecuted for how they were born. Solidarity among those ostracized for inherent traits they have no choice about should be automatic and unwavering.

But plenty of people who can be categorized as minorities disagree. There is a ream of reports about homophobia among many minority advocates, racism and misogyny in gay communities, transphobia in lesbian communities, and plenty of social justice groups fall short of embracing disability rights and the openness to bodily diversity it requires. It seems we can’t go a few days without some social justice activist revealing ignorance of and/or apathy toward the work other minority groups have been doing for years. In other words, not everyone “born different” feels the same automatic solidarity I do. It’s why the divide-and-conquer strategy so often works.

And perhaps there are other reasons for why friends frequently tease me for being an “issues person.” On Mother’s Day, it would be negligent of me to ignore another influence on my worldview that has been as powerful as my dwarfism. My mother, Susan Sullivan, is a social worker after all – and she decided to become one a good 10 years before my birth brought her and my father into the dwarf community. Her mother, Barbara Sullivan, was a social studies teacher. She would be 100 years old were she still alive today. Her worldview and its legacy deserve more than a cursory mention.

The 1975 article announcing my grandmother’s retirement in the Peru Central School newspaper reads:

Mrs. Sullivan, who teaches Problems of Democracy and Consumer Education, is presently teaching her last semester…

She has taught us many things. Maybe the most important of which is the ability to empathize or put yourself in someone else’s shoes. This is the foundation from which we can solve local, national and personal problems. Then she has gone one step further.

Mrs. Sullivan has opened many eyes to racism, sexism, poverty and the injustices present in our court and prison systems. Not only has she opened the eyes of her students, she has also helped her fellow teachers.

A lot of work is done in her classes but also a lot of discussions. The kind of discussions that help end individual prejudices…

You can bet she will be involved in the community projects that time has not allowed for in the past. Because that is the kind of person Mrs. Sullivan is – caring, understanding person who will always be remembered by any student who has ever taken any of her courses.

A little article cannot give appropriate thanks for all she has taught us. The best way we can show our thanks to her is to go out into the world and work toward ending the injustices that trouble her heart so much. Until we can do this, all we can say is… Thanks.

Grandma Barbara also taught the school’s first sex education class – a feat my teenage mother at the time found as impressive as it was embarrassing. But Grandma Barbara preferred interacting with teenagers over younger children, asking me with deep interest about drug use and the AIDS crisis when I entered middle school. When I was younger, the discussions were simpler but nevertheless motivated by sociological pursuit. She examined integration at my school by asking whom I interacted with, and I received my first black doll from her. She had been an ardent supporter of the Civil Rights Movement, and was deeply concerned about racial injustice long after it was fashionable. The night Barack Obama was elected president, I quietly shed a few tears over the fact that she had not lived to see it. But in my head I could hear her shrieking, “Hallelujah!” with all the abandon for which she was famous among her friends.

How much her own background brought her to such conclusions about the world I cannot say. She grew up in a small town in Western New York where pets were named unprintable racial slurs. An avid reader, perhaps her relentless pursuit of knowledge helped. But her intolerance of injustice was as intellectual as it was visceral. I remember her smacking the side of her head and clenching her fist in fury during a scene in the 1994 film The Jungle Book when Mowgli is shoved about and laughed at by British officers at a gentleman’s club. Through example, she inculcated in us an inability to stand idly by while others are ostracized.

One of the first Mother’s Days in the United States was proclaimed by suffragist and abolitionist Julia Ward Howe, who envisioned something far different from the celebrations embodied by flowers and greeting cards we have come to know today. She called for a day when the mothers of the world would commit to peace. She firmly believed that war would end across the globe once women were given the right to vote because no mother would vote to send her son into battle. Her belief was noble, however naïve or inaccurate.

And Grandma Barbara would have appreciated the sentiment. She was in so many ways a simply loving grandmother, who spoiled my brother and me with sweets and treats, and chased us around her backyard chanting, “Tick tock! Tick tock!” in pretending to be the crocodile from Peter Pan. But her boisterous love of the world was matched by her passionate desire to repair the world. My mother and I cannot deny she passed it on to us. It is a gift for which I will be forever grateful.

Misremembering What “Great” Looked Like

2 Apr

Rogier_van_der_Weyden_(workshop_of)_-_Portrait_of_Isabella_of_Portugal(Public domain image used via)

 

How much of a story about life in the good old days is fact and how much is fiction? In the HBO miniseries John Adams, a mob of Patriots attack a British customs officer, strip him naked and cover him in tar and feathers. The scene shows the victim slathered in asphalt tar – a substance that did not exist in the 1770s. Mobs instead used pine tar, which is brown instead of black, but filmmakers of course knew that modern viewers would not recognize it as easily as they would asphalt.

Such artistic license is arguably negligible and John Adams deserves distinction as a period drama that is predominantly accurate, rendering its characters and indoor scenes as gray and as musty as life was before electricity and indoor plumbing. Most filmmakers prefer to embellish period dramas, opting for audience appeal over historical accuracy. In the 2002 film version of The Importance of Being Earnest, the Victorian protagonists serenade their beloveds with an upbeat jazz number, which is the equivalent of playing disco music in 1945. And for most of the story, Colin Firth and Rupert Everett look like they always do – that is, clean-shaven and donning boyish coiffures they previously wore in romantic comedies set 100 years later. While parasols and top hats abound, no one in the film is flaunting the glistening hair gel and heavy handle-bar mustaches of the play’s original stage production in 1895.

Directors almost always decide that lovers and heroes in period pieces should adhere to contemporary fashion rules from the neck up, lest audiences be less likely to swoon. Thus pretty much any film set in Ancient Egypt, Rome or the Early Modern Era pretends that men never wore eyeliner or lip rouge. (And that all the good guys looked white.) Films set in the Victorian era correctly leave cosmetics off the men but wrongly apply it to the female characters, who would have been insulted by anything more than face powder. (Makeup was for actresses and prostitutes, and Victorians didn’t see much difference between the two.) Even though Queen Elizabeth II is the most famous woman in the world, the actress who portrays her in the award-winning series The Crown has a far daintier nose and jaw, with eyebrows plucked to evoke the cover girls of today. Filmmakers who wish to forego such historical inaccuracies face an uphill battle, according to John Adams director Tom Hooper: “Wherever possible I wanted to do things that weren’t about making people beautiful. The truth is there’s a whole machine of filmmaking that’s all about making people look great. And you have to really intervene in every department to sort of say, ‘No, I don’t want that. I don’t want people to wear any makeup. You’re not allowed to wash people’s hair.’ ”

Hollywood takes such liberties in the hopes that the audience will barely notice. Viewers watch period dramas in order to oo and ah at the finery, and imagine that they could easily slip into an earlier era and have a grand old time. They can imagine this because they are protected from unpleasant information such as the fact that the powdered and painted aristocrats of Louis XIV’s courts regularly relieved themselves in the gilded corridors and behind the velvet curtains of the palace. Horace Walpole noted the stench at the time, but Hollywood has yet to. The audience’s comfort comes at the expense of the opportunity to learn that standards of attractiveness, cleanliness, and morality are far from universal, shifting continuously throughout human history. Likewise, it is an opportunity to learn that our feelings of disgust are often not innate but a product of where and when we grew up.

A handful of films and plays have thrived by underscoring the changes between then and now. Mad Men earned critical acclaim and a loyal following not only for its meticulously authentic fashion but for subtly laying bare the secrets of everyday life in the early 1960s that TV shows of the era had omitted: rampant infidelity, casual racism, sexual harassment, anti-Semitism, misogyny, covert homosexuality and vicious homophobia, legal date rape, domestic violence, and health hazards as far as the eye can see. Hamilton has been a Broadway sensation for deliberately altering the facts and urging the audience to take notice – wanting all to be fully aware of the historical significance of people of color portraying national heroes who owned slaves.

Mad Men and Hamilton have garnered attention precisely because they deny audiences the escapism so commonly peddled by period pieces. Escapism can be innocuous, but not when it warps our sense of reality and the world as it is, once was, and should be. When wildly popular stories like Gone with the Wind and Song of the South portray plantation life as merry, influential social conservatives argue that African-Americans had no complaints before the Civil Rights Movement. When populist politicians inform voters who pride themselves on a lack of “elitist knowledge” that they can make their countries “great again,” difficult truths about the past remain problems unsolved. Too often our glorious history as we like to think of it is more fantasy than fact – which is why sociologists call it The Way We Never Were.

 

 

Rare Conditions & the Tyranny of the Majority

5 Mar

Odd One Out(Image by Javier R. Lineira used under CC 2.0 via)

 

Last Tuesday, February 28th, was Rare Diseases Day. (In leap years, the day is held on February 29th.) The organization’s website reports: “A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2,000. A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time.” For the purposes of this article, I will supplant the word “diseases” with “conditions” since “disease” is a complex word already examined earlier on this blog.

Rare conditions are frequently misdiagnosed and poorly understood due to a lack of funding for research. All forms of dwarfism qualify as rare, since the most common form, achondroplasia, occurs somewhere between 1 in 20,000 and 1 in 40,000 births. Vosoritide, the drug developers hope may “cure” achondroplasia, is classified as an “orphan drug.” Such drugs are so named because of their difficulty in garnering support for research and development. The Orphan Drug Act of 1983 is intended to counteract this disparity, but vosoritide owes its existence to one father of a child with achondroplasia who had the financial means to launch the project.

However, I don’t think any of these facts were what motivated me as a child to ask my mother, “There are more dwarf people than tall people, aren’t there?” I knew the answer before my mother soberly shook her head. I remember that even at the time I knew I was issuing a hope rather than an honest question. I wanted there to be more of us. Because… Because even a four-year-old knows there is strength in numbers.

Numbers help build community and communities build solidarity. The women’s movement of the 70s, 80s, and 90s often touted the fact that we made up 51% of the world population. (This is no longer true.) Lists of adopted, dyslexic, Jewish, left-handed, colorblind, or genderfluid celebrities are but a Google search away for anyone seeking to celebrate diversity. Activists in the early days of the gay rights movement frequently argued that homosexuality was far more common than assumed. But arguing for a group’s rights on the basis of its ubiquity seems to contradict the foundation of minority rights. So why do we so often do it?

Minority rights advocates know that challengers of a certain group’s fair treatment will often try to portray low numbers as proof of anomaly and anomaly as deserving of a low degree of care. When singer Jason Webley tried—and failed—to defend his Evelyn Evelyn performance, for which he and Amanda Palmer dressed up as conjoined twins raised in the circus, he argued that the number of people who could be hurt by the project was small: “I had some fear that the few conjoined twins living in the world might find the project offensive.” (Emphasis mine.) One commenter sarcastically responded that Webley and Palmer should feel “lucky” that there were so few conjoined twins for them to offend thanks to the fact that the infant mortality rate of the condition is remarkably high.

A man from the U.S. recently complained to me that “LBG-whatever people are like .000001% of the population, but we gotta hear about their rights 24 hours a day!” In 1948, Alfred Kinsey shocked the public when he deduced from his interviews that roughly 10% of the U.S. male population was exclusively gay. The current estimates of openly gay and lesbian citizens are lower than this, but of course the effects of the closet combined with the complexities of self-identification and labels remain a wrench in the work of statistics. But even if studies someday decisively prove Kinsey was overestimating the percentage, they will not disprove the fact that gay people exist in every possible culture and sub-culture. Numbers will rise as shame and secrecy recede, which in turn will cause prejudice to recede. Studies have repeatedly proven that people are less likely to be homophobic if they personally know one or more people who are openly gay. Many more lives would have been saved had there been less homophobia and more funding for research in the first days of the AIDS crisis.

Acceptance is often aided by awareness and awareness is aided by prevalence. This is a frustrating fact for minorities who will always be low in number. Women and ethnic groups may dominate a given country at a given time, but people with intersex conditions or dwarfism will never do so. But while this may be a cause for loneliness—who doesn’t like knowing someone with similar experiences?—it should not be cause for existential threat. The guarantee of liberty and justice for all is founded on the very opposite of this. When liberal democracies commit to equality for all citizens, they commit to protect the few from the tyranny of the majority. In her essay, “What to Expect When You Have the Child You Weren’t Expecting,” philosopher Alice Dreger writes, “Your child’s civil rights and status as a human being should not depend on the prevalence of her condition.” (Emphasis hers. And mine.)

Whether you are a woman with the rarest form of dwarfism or a man with breast cancer or the carrier of a condition not yet named or a wheelchair user facing a staircase, your treatment should never be contingent upon how many others there are out there like you. Equality means rare and common conditions both deserve common courtesy. Whether a condition should be cured, treated or accepted by society should be determined by whether or not it inherently causes suffering. The quicker we learn to wrap our heads around that, the less suffering there will be.

 

 

How Much Does Height Matter To You?

19 Feb

Mann und Frau
 

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

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

I’ve said it once and I’ll say it again. I did not undergo limb-lengthening to “look normal.” I did it to function better in everyday life with less difficulty and less pain. Height has mattered tremendously to me as an issue of accessibility. But as an issue of social interaction, I tend to find it only slightly more significant than eye color.

Throughout high school, I had a Yoko Ono quote taped to my bedroom wall: “You call me ‘little,’ but I have a universe in my head.” Every teen needs role models. I got excited when I lived for six months in southern France, where I encountered several women my size. There is something inexplicably pleasing about being at eye-level with someone. Which is what made the moments when guys have gotten on their knees to dance with me utterly touching.

But my husband stands at 6’5” (1.96 m), more than a foot taller than I am. Being at eye-level with someone can feel important, but it’s not that important.

And we’ve gotten compliments for being such a striking couple due our height difference. (Should we thank John and Yoko for blazing the trail?) But as said before, when we tell our loved ones what exquisite hair or adorable hands or gorgeous eyes they have, it’s more a display of affection than a statement of what we require to be intrigued. When we tell someone, “You are so beautiful,” and we mean it, it’s a testament to the sum of their parts.  To the entrancing union of their perfections and imperfections. Height is what you make of it.

I generally find a preoccupation with height amusing. When my father-in-law, who is from the Black Forest, married my mother-in-law, who was from Stockholm, they had their wedding photos shot only in close-up, so that you can’t tell that he was standing on a box.

When I was undergoing my first limb-lengthening procedure at age 11, I explained to one of my teachers, “I’ll never be super-model tall. The muscles tighten up when you stretch them and that’s why there is a limit to how far you can lengthen your legs.”

“Well, that’s actually good for you as a girl,” she said.

“Why?” I asked.

“Well, you wouldn’t ever want to be too tall and end up walking alongside a man who’s shorter than you!”

I looked at her quizzically and then smirked to myself. Sure. That was my first concern about undergoing limb-lengthening.

Eighteen years later, as I prepared my wedding, I came across a discussion on a forum for brides-to-be about the ubiquity of complaints about heels that were too high.

“Why am I hearing so many comments about not wanting to be taller than your husbands?” the main commenter wrote. “I mean, seriously? This is the 21st century. We’re all liberated about LGBT rights and feminism and healthy body image and equality, but we’re still convinced it’s unfeminine for a woman to be taller than her husband?”

Nine out of ten of the replies all said, “Well, I don’t want to look like some freak.”

This week, HuffPost Live features an interview in which dwarf reality TV star Ben Klein reveals his past struggles with depression and suicidal thoughts due to social isolation and bullying. Earlier today on Germany’s ZDF Sundays morning news show, opera singer Doris Michel revealed that no man has ever been able to get over her dwarfism and see her as a romantic partner.

It’s easy to shake our heads and feel sorry for these individuals, and then to be inspired by the courage they have demonstrated in overcoming such hardship. We praise them for raising their children to be self-confident enough to face adversity. But when the adversity is inflicted by our society’s lingering attachment to something as silly as height, it is crucial that we own up to our collective responsibility for it.

We have to ask ourselves, Is my daughter the type to trash other girls’ bodies? Does she look up to women who do? Would my best friend snicker at dwarf-tossing? Would the guys I hang out with shout at a dwarf in the street? Would I be brave enough to call them out on it? Have I ever accused someone of having a Napoleon Complex? What do I think of when I think of a freak?

Surely if Klein and Michel can overcome bullying and denigration, we can overcome any hang-ups we have about size.  And in the nature vs. nurture debate, we gotta stop saying “nurture” and start saying “culture” because it takes more than one set of parents to change the world.
 
 
 

 

Which Books Have Opened Up Your Mind?

12 Feb

Americanah(Image Sarah Mirk used under CC 2.0 via)

 

As the lists of hate crimes compiled by the Southern Poverty Law Center, Slate and The New York Times prove every week, bigotry in the United States persists. (As noted before, statistics on hate crimes here in Germany are hardly more heartening.) As debates over the best way to stem such crimes abound, a judge in Virginia has ordered a group of minors found guilty of defacing a historic black schoolhouse to spend the next year reading one book each month about various human rights struggles and to write a report on each, analyzing it in both historical and modern contexts.

She was given the idea by prosecutor Alejandra Rueda, who told the Times: “It occurred to me that the way these kids are going to learn about this stuff is if they read about it, more than anything. Yes, they could walk into court and plead guilty and get put on probation and do some community service, but it wasn’t really going to bring the message home.” The books from which they can choose are:

1) The Color Purple by Alice Walker
2) Native Son by Richard Wright
3) Exodus by Leon Uris
4) Mila 18 by Leon Uris
5) Trinity by Leon Uris
6) My Name Is Asher Lev by Chaim Potok
7) The Chosen by Chaim Potok
8) The Sun Also Rises by Ernest Hemingway
9) Night by Elie Wiesel
10) The Crucible by Arthur Miller
11) The Kite Runner by Khaled Hosseini
12) A Thousand Splendid Suns by Khaled Hosseini
13) Things Fall Apart by Chinua Achebe
14) The Handmaid’s Tale by Margaret Atwood
15) To Kill a Mockingbird by Harper Lee
16) I Know Why the Caged Bird Sings by Maya Angelou
17) The Immortal Life of Henrietta Lacks by Rebecca Skloot
18) Caleb’s Crossing by Geraldine Brooks
19) Tortilla Curtain by T.C. Boyle
20) The Bluest Eye by Toni Morrison
21) A Hope in the Unseen by Ron Suskind
22) Down These Mean Streets by Piri Thomas
23) Black Boy by Richard Wright
24) The Beautiful Struggle by Ta-Nehisi Coates
25) The Banality of Evil by Hannah Arendt
26) The Underground Railroad by Colson Whitehead
27) Reading Lolita in Tehran by Azar Nafisi
28) The Rape of Nanking by Iris Chang
29) Infidel by Ayaan Hirsi Ali
30) The Orphan Master’s Son by Adam Johnson
31) The Help by Kathryn Stockett
32) Cry the Beloved Country by Alan Paton
33) Too Late the Phalarope by Alan Paton
34) A Dry White Season by André Brink
35) Ghost Soldiers by Hampton Sides

My own personal recommendations would include Jubilee by Margaret Walker, Trash by Dorothy Allison and Americanah by Chimamanda Ngozie Adichie, since they contributed profoundly to opening my world view to perspectives and experiences I had never before considered. Stones from the River by Ursula Hegi and Good Kings Bad Kings by Susan Nussbaum were among the first nationally acclaimed novels I read that credibly portrayed experiences of physical disability. Please share any titles missing from the list that have had a similar effect on you in the comments.

 

 

 

From the Frontlines of the Women’s March in Berlin

22 Jan

berlin-00

 

German newspapers currently estimate 2.5 million people worldwide—on every continent, including Antarctica—took part in yesterday’s Women’s March.

Earlier this week there was a debate about the mention of disability in the official platform of the March on Washington. Disability advocate Emily Ladau wrote:

My heart sank when I read it.

The first time the word “disabilities” is mentioned, it shows zero recognition of disability as a social justice issue:

We recognize that women of color carry the heaviest burden in the global and domestic economic landscape, particularly in the care economy. We further affirm that all care work — caring for the elderly, caring for the chronically ill, caring for children and supporting independence for people with disabilities — is work, and that the burden of care falls disproportionately on the shoulders of women, particularly women of color. We stand for the rights, dignity, and fair treatment of all unpaid and paid caregivers. We must repair and replace the systemic disparities that permeate caregiving at every level of society.

I also recognize that women of color disproportionately take on the caregiving as a job, that caregiving can be extremely demanding work, and that fair compensation is imperative. But you know what it says to me that this bullet point is one of only two places where disability is mentioned in the entire platform released by the Women’s March? It says that my existence as a disabled woman is a “burden.” My existence as a disabled woman is “work” for someone else. My existence as a disabled woman does not matter.

Disability is mentioned only one more time in the entire platform… And considering that, according to the U.S. Census Bureau, 1 in 5 Americans have disabilities, disability rights deserve more than a cursory mention in the official Women’s March platform.

This touches on two problems: the vast swaths of feminism that ignore the discrimination burdening disabled women, and our macho culture’s fear of men taking on caregiving roles or any jobs done primarily by women. While feminists continue to fight for mandated paid maternity leave, mandated paid paternity leave is widely considered a bridge too far in the United States. Only 12% of American men offered it by their employers take it. Some economists have tried to explain away the election of Donald Trump by talking about the emasculated feelings of male workers facing a paucity of management opportunities in the American Rust Belt and that the only way to appeal to them is to give them jobs that make them the primary breadwinners in their homes once again.

While fair wages and economic inequality should be a paramount concern of any human rights movement, the insistence that men must be the primary breadwinners and will never be satisfied turning to “pink jobs” like caregiving is not highlighting an indisputable truth about all men – it is highlighting a problem in white male American culture.

Those who say the male ego simply cannot budge on the issue need only look to American black men, who pursue caregiving jobs at a rate 3 times higher than white American men do. Or look over here to Germany, where 1 in 5 students in caregiving programs are male. (Eighty percent of German men also took some form of paid parental leave—which is mandated by the government—in 2013.) Or look to the the Dulais Valley coal miners whose true, history-making story was the inspiration for in the 2014 film Pride. In that film, the problem of emasculation is recognized when one of the strike leaders argues against accepting donations from a gay and lesbian group: “Think of the men! It’s bad enough that their wives are financially supporting them, but now they’re relying on a bunch of gays and lesbians?!” Spoiler alert: By the end, the men they’re talking about open their minds. Or demonstrate that they were never concerned about it to begin with.

The Women’s March stated loud and clear that it’s on all of us to open minds about gender roles until our entire culture changes. We feed the denigration of women—not to mention all other forms of xenophobia—when we agree that white men should feel denigrated to do anything traditionally done by women. We need women who would be embarrassed to date a man in a traditionally feminine job to abandon such thoughts. We need men who are tempted to belittle a guy for going to nursing school to prove he is braver than that, until the man who does snicker is the one feeling out of place. And everyone needs to agree that caregiving is freakin’ hard and deserves to be compensated accordingly.

Yesterday’s Women’s March was a resounding success. Despite Ladau’s valid complaints—as well as earlier reports of friction among some white, middle-class feminists and feminists belonging to other minority groups—the day ended up awash in calls for combating injustice faced on the basis of disability, gender, race, sexuality, class, nationality, ethnicity/religion, immigration status, and appearance. In Washington, Gloria Steinem demanded a moment of silence for those who could not be at the March because they had to work in underpaid jobs. Tammy Duckworth got up out of her wheelchair and onto her crutches to demand unwavering defense of the Constitution and the Americans with Disabilities Act. Angela Davis seemed determined in her speech to mention every single marginalized group in the United States and overseas. And when the crowd in Berlin began chanting, “Black lives matter!”, one black woman at the center began singing for joy with tears in her eyes.

There were many signs and songs that not every protestor immediately embraced. One marcher who identifies as queer told me he disliked the portrayals of Donald Trump in drag because being trans or feminine should never be a source of shame. Plenty of marchers of all political stripes expressed unease with blatantly owning the sexualized slurs so many women are the target of. Those of us who are fans of cyborg feminism cringed at gender essentialist references to “Mother Earth” or “natural” womanhood. Others winced at all the swear words. But democracy is hard work. And it was a victory for democracy that millions were willing to march together and engage in an international conversation that sometimes made them uncomfortable. A willingness to leave one’s comfort zone is the first step toward fully embracing and protecting universal human rights.

 

 

Who’s Your Family?

27 Nov

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

From the Archives

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

— Holly Hunter in Home for the Holidays

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Originally published December 2014

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.

 

 

While Facing A Trump Presidency, We Cannot Afford to Let This Slide

13 Nov

Ku Klux Klan(Image by Martin used under CC 2.0 via)
 

It’s been a good week for anyone who believes white Christian straight men deserve more power than anyone else. Donald Trump was elected to the most powerful office in the world with the support of extremist hate groups like the Ku Klux Klan, the alt-right, the Federation for American Immigration Reform, and the Family Research Council. Many have felt validated by the electoral victory to voice what they really think of minorities. Graffiti found in Durham declared, “Black Lives Don’t Matter And Neither Does Your Votes.” The Southern Poverty Law Center, whose mission is to document and prevent hate crimes, reported over 200 incidents in the first three days after Election Day, mostly at K-12 schools, universities, and businesses. 

None of this is surprising to those of us who documented the uptick in celebratory hate crimes in the U.K. after Brexit and who have witnessed Trump do nothing to discourage supporters screaming Nazi slogans at his rallies. His long history in the public eye gives no indication he would start any time soon.  

Trump launched his political career by spreading fear that America’s first black president is not a U.S. citizen. Back in the late 1980s, he injected himself into the notorious case of the Central Park Five, wherein a group of black teens were pressured under duress by investigators to confess to raping and beating a female jogger nearly to death. Trump took out a full-page ad in the Times, calling for New York State to reinstate the death penalty because “THEIR CIVIL LIBERTIES END WHEN AN ATTACK ON OUR SAFETY BEGINS!” In 2001, a lone man confessed to the crime and DNA testing proved the likelihood of his guilt to be 6 billion to one. As recently as last month, Trump insisted the Five were still guilty.

Trump has been accused by over a dozen women of sexual harassment and/or assault, and a leaked tape recording caught him bragging about forcing himself on women. Sexual violence prevention groups know that most sexual predators are serial offenders, and therefore the more people accuse someone, the more likely it is that he is guilty. It may be important to acknowledge that in the United States one is innocent until proven guilty. But the Central Park Five know that if you’re a black man in Donald Trump’s world, you may be declared guilty even after you’re proven innocent. Trump throwing a black supporter out of his rally upon assuming he was a “thug” has done nothing to ease worries about the way he likes to govern.

Many Trump voters have been joined by those who didn’t vote at all in calling for national unity now that the election is over. They take offense at any assumption that their political choice was based in such bigotry. The best response to this has come in a post by Michael Rex that’s gone viral:

I believe you when you say you didn’t vote for any of these things. Most of America wasn’t thrilled with the choices we had in this election. But… If you’re tired of being called a bigot, then you need to use the same voice you used on Tuesday and speak out against these things fully and clearly. It’s not enough that you didn’t say them yourself. You need to reassure your friends and family members who feel like they no longer have a seat at the table that you still stand with them, even if your priorities were different on Tuesday. If you aren’t willing to do that, then you have no right to call for unity.

Mark Joseph Stern writes this week at Slate, “I Am A Gay Jew in Trump’s America. And I Fear for My Life.” And rightly so. Not only are hate crimes on the rise in the U.S., but nationalist movements that blame immigrants, minorities and gender equality for their problems are gaining power here and in the U.K., Australia, France, Sweden, Germany and in Eastern Europe. In the countries where democracy is younger than I am, voters are reverting to authoritarians with little interest in the processes and institutions that protect human rights. Non-whites, religious minorities, women, LGBT citizens and those of us with disabilities know that the concept of universal human rights is younger than many people they know. A few wrong turns and authoritarians could turn all the progress of the past 50 years into a mere moment in human history when the law offered to protect us against violence, harassment, medical abuse, and other existential threats.

Trump hasn’t had a chance to change any laws yet, and the Alternative for Germany is only polling at 20%. But hate groups around the world have been feeling empowered for a while now. Neo-Nazis, Klansmen and any other people willing to beat someone up for the way they were born commit their crimes when they think they can get away with it – when there is a high number of people who aren’t violent but still share their views, combined with a high number of people who don’t care either way about human rights discussions.

A pregnant, non-white German woman was recently punched at a train station near a friend’s house for being a “lousy refugee.” An acquaintance in a wheelchair was told by a stranger on the street, “We should gas your kind.” Perpetrators are less likely to do any of this if they fear not just legal consequences but their friends and families shaming them for such despicable behavior. Which is why it is on all of us to support the watchdog organizations that aim to expose and combat hate crimes, to speak up for those who are being told that their place in the new world order is at the bottom, and to convince the people who don’t care about any of this that they absolutely must summon the bravery to.
 

  

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

There’s More Than One Way To Make A Nerd

19 Jun

buch-und-baum-copyright-emily-sullivan-sanford

From the Archives

Can we stop using the words “nerd” and “geek” interchangeably? Forgive me if this doesn’t sound like the most pressing social justice issue of our time, but hear me out. I think the distinction is subtle but significant. 

Geeks are a subculture. They like science fiction usually because it’s built around ideas posed by math and the natural sciences, just as literature is built around ideas posed by the humanities. If you don’t have a big appetite for Star Trek, the Hitchhiker’s Guides, or video games, you’re probably not a geek. Just like if you don’t enjoy nature, long hair, or folk rock music, you’re probably not a hippie.

Nerds, in contrast, simply share one trait: wanting to learn almost everything there is to know about a subject at the expense of their cool factor. And it seems to me that there’s a little nerd in all of us. From trivia and statistics to random factoids, a nerd examines a topic down to what Slate calls “the granularity that would glaze the eyes of a normal, well-adjusted human.” Sometimes the eye-rolling this brings on is fueled by inane rules for style that value keeping the lowest common denominator very low. But anyone with social intelligence knows that it’s also unfair to demand everyone share your love for a subject, no matter what it is. 

I try not to look bored when friends expound upon existentialism, or when my dad gets excited about weather statistics, but I can likewise put them to sleep with monologues about typography or Russian grammar. I have a hard time looking thrilled when my husband analyzes the meal he cooked for us in too much detail, or when my uncle gets out his car magazines, but I get the same looks from outsiders whenever I discover a fellow classic rock fanatic. An obsession with trivia—in any area—will forever be the opposite of a social lubricant. Saying, “I’m such a nerd” with a sheepish grin usually means, “I love something to a degree that might ruin the evening if you ask me about it.”

But traditionally, the nerd word is used much more specifically. Nerd hobbies are thought to be geeky. Nerd intelligence almost always means “book smart.” The Urban Dictionary says a nerd is “one whose IQ exceeds his weight.” A gardener and a mechanic can be skilled, but only botanists and engineers can be nerds. Why? 

One summer in my early teens, I was sunbathing at a friend’s house and talking about the new atlas I had bought. “I’m hoping that someday I can identify all the flags of the world,” I smiled, with perhaps a bit too much enthusiasm.   

My friend’s mother frowned and asked, “Why?! Just to be better than everyone else?”

She knew how to repair a motorcycle. I knew the names of the world’s nations. Why was my knowledge automatically seen as a pretension? (I was too embarrassed and too young to dare to ask her, but I wish I had.)

A lot of it has to do with social status, however ridiculous that is. We tend to see bookish people as the inventors of ideas and therefore the brains. People working in production and maintenance are the realizers of the ideas and therefore the salt of the earth. Artists are classified depending on which of these two groups they appeal to: Classical composers and jazz musicians make high art for the “elite,” while rappers and country singers make soul for “the people.” (Artists who appeal to both are gods and everyone wants to sleep with them.)    

Self-proclaimed nerds sometimes defend these rigid categories, reassuring themselves that the only reason anyone would malign their expertise is meat-headed jealousy. This is certainly true in many cases. The stereotypical anti-intellectual will lash out when someone’s way of life threatens to highlight his weaknesses. But the stereotypical ivory tower snob will sneer when someone’s way of life threatens to highlight his weaknesses.  Both the belligerent athlete and the arrogant mathlete lack the emotional intelligence to recognize that both trigonometry and football require brains. Both topics can be obsessed over in nauseating detail. But Western society—which places an inordinate emphasis on IQ—has yet to be convinced of this. IQ tests define “intelligence” as strong mathematic and/or verbal skills, and so do most of us when we describe someone as “smart.” This is wildly inaccurate and unhelpful.

Howard Gardner’s theory of multiple intelligences turns 30 this year, but we have yet to adopt the concept into our common parlance. The theory currently identifies seven forms of intelligence:

1) Logical-Mathematical Intelligence – useful to chemists, accountants, physicists  

2) Linguistic Intelligence – useful to writers, speech therapists, managers

3) Kinesthetic Intelligence –  useful to athletes, surgeons, carpenters

4) Visual/Spatial Intelligence – useful to photographers, architects, engineers

5) Musical Intelligence – useful to composers, dancers, poets

6) Interpersonal Intelligence – useful to counselors, salespeople, politicians

7) Intrapersonal/Introspective Intelligence – useful to philosophers, artists, parents

(Some groups have promulgated a theory of Culinary Intelligence, as well as Sexual Intelligence.) 

So there are more than two ways to be “smart.” It seems logical to conclude that people choose their jobs based on combinations of intelligences. A speech therapist needs both linguistic and interpersonal intelligence, whereas a songwriter needs linguistic and musical intelligence. A dancer needs musical and kinesthetic intelligence, while a soldier needs kinesthetic and spatial intelligence. Take that, IQ tests.

But this shouldn’t come as a big surprise. Every one of us knows someone who’s read a hundred books but can’t fill out a tax form. Or who can identify every bit of green in your backyard but can’t analyze news stories in a historical context. Or who can counsel people with all sorts of problems but can’t dance for the life of them. Or who can sew the coolest costumes but can’t make strangers feel comfortable. We should all be big enough to take pride in our talents and to be teased for our weaknesses. Especially if we’re going to start fully accepting people with certain disabilities.

The theory of multiple intelligences does not claim that everyone is a genius in their own way. Everyone knows a good guitarist isn’t as smart as a great guitarist. But the theory asserts that a great guitarist is no smarter than a great nurse or a great ballerina or a great chemist. So why then do we call the chemist “smart” and the others “talented”? 

And why isn’t the soccer nut who won’t stop analyzing the semi-final games called a nerd? Why isn’t the housewife who goes on and on about how to master pie crust recipes called a nerd? Maybe it’s because these activities are socially condoned: A guy is expected to love sports and a housewife is expected to love baking. Maybe by choosing less socially accepted hobbies, people of high IQ monopolize the term “smart” as a consolation prize.  Maybe the term “nerd” still carries too much stigma for socialites to desire it. Maybe if we broaden the use of these words, maybe if everyone recognizes their inner nerd, then maybe some social barriers will be knocked down along the way.

I’m not expecting utopian results. We’re all doomed to clash over our passions because no one can be expected to obsess over the intricacies of every subject on earth. Whenever I get together with a friend who works as a computer programmer, it’s a fight over whether we play games that reward strategy (like Monopoly), or games that reward vocabulary (like Scattergories). He’s geekier than I am, but he’s not nerdier. In any case, I always get my way because I’m bossier.

Originally published January 13, 2013

 

 

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 non-white people, 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.”

 

 

Can We Understand Race In Terms of Medicine?

14 Feb

Take off your fucking mask(Image by Taylor Dave used under CC license 2.0 via)
 
Leaving you this Valentine’s Day with the urging to go read an excellent discussion at NPR titled “Is It Time to Stop Using Race in Medical Research?

Then go read Alva Noë’s essay, “Can You Tell Your Ethnic Identity from Your DNA?” He writes:

…even if, in the ideal case, we find meaningful clusters of similarity in the space of genetic variation, there is no reason to think that these will map onto ethnicity or other categories in terms of which we understand our own identity. Identity, after all, varies non-continuously. French and German villages may be separated by the smallest of geographic distances. Genetic variation, on the contrary, so far as we now know, varies continuously. DNA is just not going to carve up groups at their culturally significant “ethnic” joints.

This interests me personally because any sort of categorizing of humans ends up being far more complicated than our everyday discourse would have us believe. Race, gender, and disability are so often thought to be concretely definable through bodily indicators, yet our categories for these identities—black/white/Asian, male/female, healthy/disabled—often fail fantastically to represent a good portion of humanity. As I’ve shown before, dwarfism itself is a social construct. All identities are to some extent.

 

 

Can We Understand What It Is Like To Hear Sound for the First Time?

17 Jan

listen(Image by Jay Morrison used under CC license via)
 
In the 1990s, Cristina Hartmann was one of the first of a few hundred deaf and hearing impaired children in the United States to undergo surgery for a cochlear implant. She has written extensively about the experience of hearing sound for the first time after the implant in her right ear was activated, most recently this month on Quora.com:

My mother was the one who told me, “Raise your hand when you hear something.” That statement left me baffled. What was I looking for? It was a bit like searching for Waldo when you didn’t know what he looked like.

In that tiny, windowless room deep in the large Manhattan hospital, the audiologist began tapping away at her keyboard. Everyone stared at me, even a woman standing in the doorway whom I had never seen before. I felt the heavy weight of expectations on my shoulders. I had to do something. I concentrated very hard, searching for the mysterious, indefinite Waldo. Whenever I felt anything, an itch or a breeze, I raised my hand slowly, searching everyone’s expressions for whether I had gotten it right or wrong. Nobody gave me any confirmation, so I went on guessing. Twenty-five years later, I realize the whole thing was a show that I performed. I knew this was a momentous event, and I didn’t want to disappoint….

As a congenitally deaf child (who was a bit long in the tooth at 6), I had never formed the neural pathways for my brain to even begin processing auditory stimulation. In the fashion of the ostrich, my brain ignored the strange stuff, and I remained as deaf as I had been an hour prior…

It took months and plenty of therapy for her brain to adapt. Thirteen years later, the activation of a second implant, this time in her left ear, proved a more harrowing experience than the first:

As the audiologist began the beep sequence, I burst into tears and involuntarily clenched the left side of my face. She looked up, puzzled. “Why are you crying? You’ve had this before!” she said. The pain was like sparklers going off on the left side of my head. The stimulation, as little as it was, completely overwhelmed me.

Even though I had already laid the neural pathways for auditory stimuli for my right ear, my brain was unprepared for the stimuli coming from the left side. Since my brain had already experienced this type of stimuli, it could process it, but it was still sensory overload. That stuff hurts. It took me months to acclimate myself to the new implant, but in the meantime, I cringed every time I turned it on. As I said, laying new neural pathways takes work.

Hartmann was later told by the mother of another patient, “Once they started with the beeps, [my daughter] screamed and cried.”

Such narratives exist in stark contrast to the YouTube videos of newly activated implant users laughing and smiling—and, in one case, crying for joy—that have been bouncing around the Internet with far greater frequency. While both narratives provide important information for those considering cochlear implants for themselves or their children, they are also an important contribution for the greater public in our understanding of what it means to be deaf.

It makes sense that crossing out of the world of silence into the world of sound is just as disorienting as its opposite. A hearing person with a middle ear infection strains to perceive the sound of speech, and a deaf person with a new cochlear implant strains to tune out noise pollution: the knocks of a radiator in another room, car doors slamming on the street, wind, footsteps, not to mention the countless background beeps and clicks of the Digital Age. After all, when a baby leaves the womb, she does not instantly adapt to her new home. She comes out crying. There’s too much light and not enough warmth. And, if she is not deaf, there is too much sound.

Speech is no less difficult to learn than Sign language, just as English is no less difficult than Chinese. The ease with which we learn one form of communication or the other depends entirely upon our personal experience and place in the world. For those of us who have grown up hearing speech, the viral videos communicate something very different than for those who grew up in Deaf culture.

While the experiences of utter delight portrayed in the videos are valid, their popularity contributes to an oversimplification of the issue. Watching a toddler smile upon finally hearing his mother’s voice for the first time sends a very strong subliminal message: Being deaf must be worse than not being deaf, and therefore anyone would want to join the world of the hearing. But the general public as an audience is already biased toward the hearing world’s standards of happiness. We are moved by the sound of loved ones uttering our names but not at the image of them signing our names because our culture does not rely on—and therefore does not highly value—Sign language.

This what inspired Lalit Marcus, the daughter of deaf parents and an active promoter of Deaf culture, to pen an article for The Wire titled, “Why You Shouldn’t Share Those Emotional ‘Deaf Person Hears for the First Time’ Videos”:

I want to make it clear that I don’t have a problem with people who choose to get cochlear implants. Medical decisions are painfully personal… I’m all for people making the health choices they think are best for them. What bothers me are the maudlin videos produced out of someone’s intense, private moment that are then taken out of context and broadcast around the world. What bothers me is how the viewer never learns how the individual came to the decision about their implant, which factors they took into account, whether their medical insurance covered it. Sometimes we don’t even learn their names.

This gives me pause. I consider the clip of me removing my casts to look at my newly lengthened legs, which featured 15 years ago in the HBO documentary Dwarfs: Not A Fairy Tale and last year on Berlin’s public station. The moment was simply joyous—as was the moment I stood up, let go of my friend’s hands and took my first steps—but the story behind it was abundantly complex. Which hopefully both documentaries portray.

I have endeavored to communicate that through this blog and all the media work I have done for the past 20 years.

Limb-lengthening and cochlear implant procedures are markedly different in several ways. Limb-lengthening, for example, does not threaten to endanger another language. But it does threaten to break ranks in the dwarf community through the controversy of altering versus accepting extraordinary bodies. Both procedures have proven to evoke vitriol among their proponents and detractors.

Hartmann reveals:

Most of my deaf friends were good about my CI. They didn’t mind it, except for the fact that my speech therapy cut into play time. That being said, people in the Deaf community felt free to make pointed and derisive comments about my CI. I still get these comments, even almost 24 years after my surgery. To some, I’ll always be a CI-wearer and a turncoat.

The CI advocates aren’t any better, if not worse.

I have very pleasant relationships with many parents of implanted children and CI users. I, however, have also been called a failure because I still use [American Sign Language] and don’t speak perfectly. I’ve also seen a mother run across a room to prevent her child from signing to another deaf child. I’ve been scolded for making gestures and looking too “deaf.”

The debate, of course, is ongoing.

But for those of us not faced with opting for or against a cochlear implant, we are faced with the challenge of overcoming our bias and remembering that Deaf culture is no less valid than the hearing culture we inhabit. Especially when those admittedly tantalizing videos wind up in our Facebook feeds.

 

 

Body Dysmorphia & the Dangers of Operating Out of Insecurity

29 Nov

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

“God, my hips are huge!”

“Oh, please. I hate my calves!”

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

“My hairline is so weird.”

“My pores are huge!”

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

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

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

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

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

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

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

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

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

 

 

What the Stubblefield Rape Case Means for Disability Rights

22 Nov

Words as skin(Image by Maurizio Abbate used under CC license via)

 

When people continue to believe in a method that has repeatedly been proven not to work, what harm can it do? Does it matter that an herbal supplement is ineffective if someone who uses it says it truly makes them feel better? Does it really matter whether or not primates can learn American Sign Language or parrots can learn to read English out loud if it makes animal lovers so happy to believe that they do?

Misinterpreting animal communication can of course be dangerous. In 2007, a Dutch woman who insisted she was bonding with an ape at her local zoo refused to believe the primatologists’ warnings that staring directly into a male gorilla’s eyes and showing one’s teeth—i.e., smiling—triggers aggression. She refused to believe this even after the gorilla broke out of his enclosure and attacked her.

But what if someone assumes a living person is communicating with them? What if they assume said person is confiding their wishes and life choices in them? What if they can do so because we don’t share a common language with the person they claim to be speaking for?

Facilitated Communication, a.k.a. “FC,” is a method developed in the late 20th century to help severely disabled people with little or no speech communicate with others. By supporting their patient’s hand or arm, a trained facilitator could theoretically help the patient type out sentences, thereby “unlocking” intelligence previously obscured. The method was considered a breakthrough for patients with diagnoses ranging from severe autism to severe cerebral palsy. It was touted as a miracle for their loved ones, who understandably wanted nothing more than to be able to hear their thoughts, wants and needs.

Anna Stubblefield is a philosophy professor and disability rights advocate who, until recently, taught seminars about FC at Rutgers University. What she did not teach her students is that FC has been condemned over the past three decades by the American Psychological Association, the American Association of Pediatrics, the American Association on Intellectual and Developmental Disabilities, the Federal Trade Commission, and the New York State Department of Health, among others. Double-blind testing generally reveals the facilitator to be subconsciously guiding their patient’s typing, rather than simply supporting it. This year Sweden banned FC in schools nationwide.

Professor Stubblefield adamantly rejects the classification of FC as a pseudoscience. Her mother was a pioneer of the technique. When one of her seminar students asked her in 2009 if it could perhaps help his severely disabled young adult brother—referred to in the press as “D.J.”—she agreed to treat him. A 20-page report in The New York Times Magazine chronicles Stubblefield’s increasingly intimate relationship with her patient, eventually culminating in her announcement in 2011 to his family that she and D.J. were in love. She planned to leave her husband and two children for him. As his legal guardians, D.J.’s family told her she had overstepped her boundaries and requested she leave him alone. When she did not, they eventually filed charges against her. They testified that gradually Stubblefield’s claims to D.J.’s interests and values—typed out in their FC sessions—had begun to sound suspiciously like things she would want him to say. Stubblefield was sentenced last month to 40 years in prison for sexual assault.

Another proponent of FC, Martina Susanne Schweiger, was convicted last year in Queensland, Australia for performing sex acts on a 21-year-old patient whom she believed had reciprocated his love for her via FC.

I’ve written before about widespread prejudices against disabled people and how often it denies us our sexuality. But disabled people also suffer sexual abuse at rates far higher than the general population. Most are taken advantage of by their family members and/or caregivers. Stubblefield and the remaining proponents of FC argue that their critics are ableist for denying D.J.’s capacity for intellect and intimacy. The prosecution argued that Stubblefield is ableist for assuming she knows what D.J. wants.

The desire to be the next Miracle Worker is understandable and so often noble. Who doesn’t want to help those in need? And the lure of the controversial in the pursuit of justice is not uncommon. From Jodie Foster and Liam Neeson in Nell to Sean Penn and Michelle Pfeiffer in I Am Sam to Adam Sandler and Don Cheadle in Reign Over Me, Hollywood is rife with love stories and courtroom dramas about a misunderstood outcast who has finally found the one open-minded hero who understands him, believes in him and then must fight the cold-hearted, close-minded authorities from keeping them apart.

Yet red flags should go up whenever there is a risk that a self-appointed advocate is putting words in someone’s mouth, no matter which side that advocate thinks they are on. Particularly when their patient or client belongs to a highly marginalized minority.

News of this case has elicited many head-shaking responses along the lines of, “Well, they all sound nuts.” One of the jurors told NJ.com, “I was like…‘You’re going to leave your husband and your kids for someone like this?’” Disability rights advocates rightly bristle at the infantilizing of D.J.—not to mention the salacious headlines that seem obsessed with his personal hygiene—while ultimately declaring the case incredibly sad. Yet we rarely use “nuts” or “sad” to describe male teachers convicted of seducing students unable to give consent. We describe them as predators or abusers.

Abusers of course rarely think of themselves as such. Child molesters are often convinced their victims were flirting with them. Few would consider themselves sadistic. Most are simply skilled at rationalizing their behavior to themselves. But regardless of what they believe their intentions are, abusers by definition deny others power in pursuit of their own.

The Stubblefield case and the Schweiger case highlight a very uncomfortable fact for disabled people everywhere: that some of the caregivers and activists working and sometimes fighting on our behalf are doing it to feed a savior complex. And anyone with a savior complex is not truly listening to those they claim to be helping.

Addressing this problem becomes increasingly difficult when we consider how very young the concept of disability rights is over the course of human history. Living in any other era, most of us would have been abandoned by our families in asylums or elsewhere. Ancient Spartans advised throwing us off cliffs after birth. Some modern philosophers, such as Prof. Peter Singer, still advocate infanticide for some. Awareness of all this often makes us feel compelled to be eternally grateful to anyone who offers us any sort of support or help, regardless of whether or not it is truly helpful or respectful of our boundaries.

That we do not yet have the means to access D.J.’s thoughts and desires is indeed tragic. But opposition to FC does not mean we damn severely disabled people to the realm of hopelessness. On the contrary, accepting criticism of FC can only help to improve upon the ways in which researchers develop better practices and technologies. Relying on discredited methods would not have gotten Stephen Hawking his voice. Annie Sullivan prevailed with Helen Keller because she not only relied on rigorously tested methods but also shed her status as Keller’s sole communicator by enrolling her in an interdisciplinary program at the Perkins School. The ability to kill your darlings is an ingredient of innovation.

And any true investment in disabled people and the methods that best assist them must be accompanied by the credo activists began using around the time D.J. was born: Nothing about us without us.

 

 

Who Should Think You’re Beautiful?

11 Oct

Goodnight(Image by Aphrodite used under CC 2.0 via)

From the Archives

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

Originally posted September 15, 2013

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.