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It’s Dwarfism Awareness Month and I’m Aware that Most of Us Don’t Understand Genetics and Medicine

8 Oct

Bones(Image by Gema used under CC 2.0 via)
 
 
“Hey, I had a test question about achondroplasia today!” an old roommate of mine reported to me a few years back. He was a medical student and had been studying for his licensing exam.

“Oh, yeah?” I asked. “What was the question?”

“Whether or not achondroplasia affects intelligence.”

“And the answer was…?” I smiled.

“The answer was no,” he replied, returning the smile.

That this was a test question implies a necessity for teaching this fact. Indeed, for a good part of modern history, children with achondroplasia and other types of dwarfism were too often assumed to be intellectually disabled and placed in institutions or special ed classes for life. Hence a meme from Little People of America that’s been floating around the Internet in honor of Dwarfism Awareness Month: “A common misconception about people with dwarfism is that they are cognitively delayed or mentally impaired. This is NOT true.” Activism will remain crucial until this misconception is no longer common.

What are the chances that it ever will be? Equality and empathy are the heart of every human rights movement, but these ideas alone did not disprove the idea that lower than average height is indicative of lower than average intelligence. Science did that. The scientific method uncovers the facts. Political activism spreads the word.

Despite what some extremist conservatives claim, science doesn’t have a liberal bias. It often reveals facts upsetting to many. For example, contrary to some Dwarfism Awareness campaigns, people with achondroplasia cannot be anything they want to be. They cannot be construction workers, gymnasts, military combatants, weight lifters, or participate in most contact sports because the achondroplastic spinal column is compressed, rendering these activities more life-threatening for us than for most people. That’s a scientific fact.

It need not be a cause for regret. I don’t consider a life without the ability to participate in contact sports or construction work any less enriching than a life without the ability to sing on key or identify bird calls or cut hair or write without spellcheck. (When I’m feeling snarky, I steal a line from this movie: “Dear White People on Instagram: You own an iPhone and you go on hikes. We get it.”) Competitive and aggressive feats of strength can be a way to be a stronger person, but they are not the only way. You can tell me a million times that I cannot safely lift anything heavier than a small child over my head and I will never take it as an insult.

What is insulting is to tout broad assumptions about conditions and bodies as facts when they have not been corroborated by several studies. Someone with dyslexia is unlikely to master a word scramble, but that does not mean she cannot be a skilled writer. Someone with Down Syndrome cannot practice medicine, but that does not mean he cannot get a job. If you hear that people with dwarfism cannot have a high IQ, teach, drive, play tennis, perform surgery, give birth, or take care of children, these are not facts. They are assumptions. Yet they have been dispersed far and wide, terrifying far too many people with dwarfism and their parents.

Having a rare genetic mutation has taught me that teaching science to the masses is hard. Most of us who are not scientists develop our understanding of medicine based on doctor’s visits, pop science news articles, and hearsay, as opposed to peer-reviewed research published in medical journals or textbooks. This is to be expected—when was the last time I read a medical journal straight through?—but it results in all sorts of inaccurate and potentially dangerous assumptions.

When I recently tried to explain to some new friends that the gene for achondroplasia is dominant, one insisted, “Achondroplasia can’t be dominant because then most people would be dwarfs!” Wrong.

When my parents visited one of their first Little People of America meetings shortly after I was born back in the early Eighties, one volunteer said, “Dwarfs don’t live as long as average-sized people do because they have to walk twice as many steps in their lifetime.” Also wrong. The most common cause of lower life expectancy among dwarfs throughout history has been a lack of access to appropriate health care due to social marginalization.

When a journalist asked the owner of a Hollywood freak show last year why one of his main performers had died at the age of 32, he replied, “A lot of them don’t have long life spans. Little hearts and the whole thing.” The reporter revealed in his excellent exposé of the depressing freak show business that the performer in question died of alcoholism.

My career as a writer has helped me see how much we love stories that are both out of the ordinary and easy to understand. My dwarfism has caused me to be confronted with the ubiquity of scientific misinformation in these stories and has helped me see how xenophobia facilitates the lazy thinking perpetuating scientific myths about minorities. Black Americans can’t swim? More like they were barred from learning how. Half of gay male teens have AIDS? File that one next to the Victorian belief that masturbation causes blindness. Women don’t have the skills to be Silicon Valley programmers? In Western cultures where men are expected to be bread-winners, women have been dissuaded from pursuing the highest-earning jobs, whether we’re talking about doctors and nurses, professors and school teachers, or milk men and milk maids.

This is why I approach most scientific and medical “facts” uttered to me with a heavy dose of skepticism. This can be draining. Some days I would like to simply trust Google or a Facebook Group for dwarfs instead of having to track down out-of-print medical textbooks or wait months for my orthopedist to have a free appointment in order to find it out if I should be concerned about osteoporosis or fibroids. But doubt is the fuel of innovation and vigorous research ultimately harms no one.

And when facing complex disabilities and learning about what certain bodies absolutely can and cannot do, we should not confuse being talented with being good. Just as it is hard for us to resist a fascinating story, it is hard for us to resist the idea that strength of body and mind also indicates strength of character. But acing any sort of competition says little about your ability to be brave, honest, generous or humble. Need proof? Celebrity scandals are but a Google search away.
 
 

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How to Insult 10 Different Kinds of Families with One Campaign Poster

17 Sep

Bundestag(Image by Michael Fötsch used under CC 2.0 via)

 

I was riding the bus home from work earlier this week through downtown Berlin when I caught sight of this campaign poster for the Alternative für Deutschland party. Featuring a white woman’s visibly pregnant belly, it reads: “New Germans? We’ll make them ourselves!”

Talk about a punch in the gut. At first glance, the poster appears to be promoting closed borders and “traditional” family values. But it can never be read free from the history of the Nazis’ obsession with using women to make white, Christian, non-disabled babies. Lebensborn was an association built expressly for that purpose. Women across Germany who had four or more children and who were not branded degenerates were awarded medals by the Third Reich. Anyone who has gone to school in Germany knows about all this.

It would be perverse to claim this AfD poster is more upsetting than any of the others, which target burqas, halal cooking and the idea of multiculturalism. But as a woman with both a residence permit from the immigration office and a disabled ID card in my pocket, I felt the attack personally. The deep sadness then turned to desperate hope that the poster escaped the view of those who are more likely to be targets of street harassment than I am (people of color, LGBT couples and religious minorities), and anyone returning from a fertility clinic or an adoption agency.

Germans go to the polls next Sunday. Over the last ten days the AfD has been projected to win between 8% and 12% of the vote – far behind the top two parties, but fighting neck-in-neck with the Greens, the Left, and the pro-business Free Democrats for third place. As long as they reach the 5% minimum necessary for earning seats in the Bundestag, a difference of three or four percentage points will technically have little effect on the AfD’s ability to influence policy. Because all the other political parties have refused to work with the AfD, it will not be able join a coalition. But coming in third place instead of fifth or sixth will make a big difference in the post-election narrative. Both critics and supporters of the AfD will claim that Germany is shedding some of the post-WWII taboos and political correctness that have defined its democracy for the past 50 years.

Many voters here tell me they hope the AfD’s success in next week’s election turns out to be a one-hit-wonder that quickly falls apart like so many small parties have done before. But no matter what happens on September 24th, it is important to remember that the 12% of voters who have ever been sympathetic to the AfD and its xenophobic politics have been around for a long time.

Unlike the ostentatiously angry Nationalist Party, which has never come close to garnering 5% of the vote, the AfD has sought success by branding itself the moderate voice of xenophobia. They hope to appeal to conservatives and left-wingers alike who worry about multiculturalism gone mad. Most of their voters like to think of themselves as open-minded, not hateful. They just think there need to be restrictions on immigration because they’ve heard tales of towns overrun by foreigners who don’t know how to put their garbage in the bins. They just want to ban burqas and niqabs because sexism. And Islamic holidays and symbols should not be prominent in public or in schools because Germany should be recognized as a Christian nation. They don’t mind that the AfD’s candidate for chancellor is openly lesbian. It would just be nice to put an end to all this talk about LGBT rights. They tell my friends and me that when they complain about immigrants, “I don’t mean you.” C’mon, they’re not Nazis. They’re just asking, “What about me?” If you’re gonna call it racism or sexism, then it’s the reasonable kind. The kind every person is born with. Common sense.

The short but bombastic history of the AfD proves that xenophobia in moderation doesn’t work. The party was founded by pro-business politicians who opposed the EU à la Brexit. These founders were soon driven out and replaced by the anti-immigrant populists of today. Every few months the party has had an internal war involving someone who said something that’s just too reminiscent of the Third Reich. On the outside, friends of color report more frequent street harassment since the AfD’s increased presence. The disability rights organization AbilityWatch reports the AfD was the only party who declined to respond to their issues. The gay and lesbian alliance LSVD rates the AfD the most homophobic of all the major parties despite its current leadership.

That campaign poster embodies all this. It’s what you get when you think some degree of xenophobia is reasonable.

 

Disclaimer: As noted before, no political party will ever be endorsed on this blog, but political threats to human rights and equality, both historic and contemporary, will always be analyzed.

 

 

Don’t Be A Sucker

20 Aug

 

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

 

 

 

 

Charlottesville

13 Aug

Unlearn Racism 1(Image by Joe Brusky used under CC 2.0)

 

A woman lost her life over the removal of a statue. Her murder is an atrocity and a tragedy. But the greater danger of the horrors that went down in Charlottesville is the readiness of anyone to sympathize with or relativize the white supremacist movement that brought it on.

“I’m tired of seeing white people pushed around,” one marcher told The New York Times. “Jew will not replace us” was chanted by torch-bearers on Friday night. I don’t want to run through the specifics of Confederate monuments or Nazism or the global wave of nationalism. I’ve done that before and plenty are doing that now. Some of the marchers call themselves Neo-Nazis, some call themselves alt-right activists, some identify as Trump supporters first and foremost. But all were white-supremacists.

While plenty of spectators from afar will surely protest that the acts of violence were carried out by only a few, white supremacy is not limited to the willingness to harass minorities into submission. White supremacy is so much bigger than that.

If you believe it’s important that white people remain the majority of the U.S. population—or any Western country—that’s white supremacy. If you want to decide what words are and aren’t offensive to minority groups without listening to anyone belonging to those groups, that’s white supremacy. If you feel self-conscious as the only white person in a room but never consider how often people of color endure that situation, that’s white supremacy. If you feel pushed around at the sight of a non-white or non-Christian person getting a job, a raise, a promotion or an honor that you didn’t get, that’s white supremacy. If you more readily fear non-white and non-Christian criminals and terrorists, that’s white supremacy. If you tend to believe white poverty is about unfairness or personal problems while any other poverty is about inferior cultural values, that’s white supremacy. White supremacy is about power, and if any of us feel threatened when the descendants of slaves request the removal of honors for those who fought to keep their ancestors in chains, we absolutely must ask ourselves where, when and why we feel powerful.

It’s not easy to face these questions. White people in the West grow up used to seeing white people at the center of most conversations. White people today didn’t create slavery, anti-Semitism, colonialism or this white supremacist reality. But we reveal how deeply we have come to believe in it if we can’t handle the idea of seeing the system change.

 

 

 

Should You Avoid the Word “Inspiring” When It Comes to Disability?

6 Aug

lying body(Image by Crodriguesc used under CC 2.0 via)

 

Many of the [deaf, dwarf, autistic, schizophrenic, disabled, transgender & gifted] people I interviewed said that they would never exchange their experiences for any other life – sound thinking, given that exchange is unavailable.

– Andrew Solomon in Far from the Tree

 

Clichés are ideas, images, and sayings that are overused. They start off as messages that easily convey meaning. Such ease may at first be a sign of their success. But when they are repeated too often, they foster laziness. They hamper inquiry and innovation. We see a happy picture of a mother and child, we recognize it and all the uncomplicated feelings it is intended to convey, and we move on. Clichés hinder change and therein progress.

The opposite of a cliché has the opposite effect. It makes us pause, look again, consider the world and our assumptions about it, and—in the best case scenario—prompts a shift in us and our habits.

The term “inspiring” is cliché in the realm of disability, which is why it is on its way to becoming a taboo, if it hasn’t already. A boy who walks with crutches while flashing a smile is inspiring. The sheer willingness to face each day with lupus is inspiring. A runner with prosthetic legs is inspiring. Inspiration porn refers to such images in posters, human interest pieces, and memes, and their use as a reminder to a non-disabled person of how good they have it. This reminder is ever-so brief in comparison to the life situation that triggered it.

Inspiration porn is unrealistic but it has its roots in truth. Well-being is often achieved through a sense of gratitude and gratitude comes from having perspective. But the overuse of inspiration porn is problematic because it is one-sided. We are shown the simplicity of happiness but never the complexity of bioethics, the politics of disability rights, or the repetitiveness of chronic pain. The predominance of grinning patients is worrisome to disabled people because we could conclude from it that the world is only interested in us insofar as we are willing to repress anything contrary to the sunny narrative. This implies that the world is our ultimate fair-weather friend.

Inspiration porn can enable emotional vampirism. In the name of being “inspired,” we are often invited to watch someone with a disease or disability on reality TV, shed a few tears, congratulate ourselves for our willingness to dabble in sadness, and quickly move on to life as it was, perhaps lecturing others on just how hard others have it, while never considering our indirect role in any hardship. How many people say they have been “inspired” by Little People, Big World but then do nothing to change the U.S. policy on the U.N. Convention on Rights of Persons with Disabilities? I’m gonna say lots. Those addicted to emotional vampirism empathize in all the wrong ways, frequently muddling the truly tragic and the merely different.

But “inspiration” need not be unproductive. Watching and reading about disability, illness, and loss can ground us to humanity. After all, what else can – besides knowing someone personally? Such connections can lead us to genuinely understand the frivolity of our daily worries about job promotions, physical fitness, and that thing a supposed friend muttered to us that may have been a back-handed insult or may have been nothing at all. Having perspective is rarely a bad thing. There’s no harm in feeling gratitude—not pride, but gratitude—for every day that we do not have to endure intense physical pain or face probable death.

We can draw both good and bad conclusions from seeing someone doing something we didn’t know was possible. I am concerned when exceptionally talented disabled athletes are promoted as proof of why no one should ever take a break or not take risks. But I was suddenly overjoyed the first time I was treated by a doctor with a visible disability. (Seriously, I almost hugged him.) Representation feels good. Seeing is believing, to use a cliché.

History has proven that innovation and bravery are often contagious, as are idleness and cowardice. We’re social animals. Progress relies on our recognizing the world’s hurdles that need to be removed regardless of whether or not we have a personal connection to those they hold back.

But “inspiring” is overused. Maybe “humbling” is a better term. In this day and age, humility is so rare we may as well consider it radical. And how about “provoking”? When we see someone face struggles we can only imagine, we could ask ourselves if it provokes anything in us. And go from there. 

 

 

When A Hero Comes to School

30 Jul

IMG_7178(Image by Gordon Tarpley used under CC 2.0 via)

 

Leaving you this weekend with a short video of British actor Warwick Davis’s visit to a Nottingham primary school to explain dwarfism on behalf of Jasmine Chapman, a pupil with dwarfism who had asked Davis to come.

Davis has starred in a variety of block-buster fantasy films alongside the likes of Daniel Radcliffe, Val Kilmer, Diane Wiest, and Carrie Fisher. While his average-sized co-stars have had careers expanding far beyond the fantasy genre, Davis has not. This is frustrating.  As I’ve written before, it’s a problem that almost no disabled actors are famous, and the tradition of dwarfs in fantasy is complicated. Davis’s role in Ricky Gervais’s one-season-long series Life’s Too Short was even more so.

But most primary school children are unaware of all that. And sometimes that’s a good thing. I had a crush on Davis as a child after first seeing him in Willow in 1988. He had a lovely speaking voice replete with British accent and long curly hairy and he ended up the hero. I bought it. I was blissfully ignorant of the clash between adults telling me I could be anything I wanted to be and the reality of the job market for people with dwarfism at the time. Children need heroes.

I watch the video of nine-year-old Chapman sitting next to Davis as he explains that he and she are only different by virtue of their size and otherwise just like everyone else – sidestepping the intricate issues like chronic pain, necessary surgeries, disability funding, bioethics, political correctness, beauty standards, street harassment, and job discrimination. I watch the way he holds the kids’ attention by reiterating his lines as Professor Flitwick in the Harry Potter films. I watch it and I know that at Chapman’s age, I would have simply loved every minute of it.

 

 

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.      

 

 

“A Publicly-Funded Freak Show in the 21st Century”

11 Jun

Jester (Image by Quinn Dombrowski used under CC 2.0 via)

 

This satirical video advertising a “fidget midget spinner” appeared this week on funk, an online media site owned by Germany’s public broadcasting channels ARD & ZDF. Michel Arriens, president of Germany’s Federal Association for Short-Statured People and their Families (BKMF), released a video in response. He argues:

“Midget” means “dwarf” and as a short-statured person, I do not want to be referred to that way. “Midget” is a slur in America, in Germany. And short-statured people are short-statured people. And I am Michel and I have many abilities and maybe some faults, too, but I do not want to be compared to a dwarf or a Lilliputian because Lilliputians come from Gulliver’s Travels and dwarfs appear in Lord of the Rings, but I’m from Hamburg and I’m made of flesh and blood, and you don’t seem to get that.

I demand that you immediately delete this video, apologize to the community and in the future use our tax money for better, more sensible things than ableist, inhumane  s***. 

Funk has not deleted the video, but posted the following a statement directly below it:

Hey Everyone: After hearing your reactions and discussing this issue both within our team and with Michel Arriens, we have decided to leave the video here because we don’t want to put an abrupt end to the discussion. We did not wish to hurt anyone and yet we obviously did – and for that we want to apologize. If you are interested in learning more about short-stature, we recommend visiting the website of the Federal Association for Short-Statured People and their Families at www.bkmf.de. We are also grateful to you for getting this discussion started with your comments and we want to continue to learn about this subject in more depth.

Funk’s apology appears as sincere as the original video is cringe-worthy. The supposed hilarity too many find in short-stature continues from the courts of Medieval and Early Modern Europe on into the present day comedy of online videos, sitcoms, dramas, sketch shows, late night shows, and art-house films.

As for Arriens’ argument about words, here in Germany the word “dwarf” („Zwerg“) is used to refer to little old men featured in fairy tales and the fantasy genre, and it is also commonly a pet name for little children. It is therefore considered a slur. Over the course of the disability rights movements of the last few decades, the medical term “dwarfism” (“Zwergwuchs”) has been dropped and replaced with “short-stature” (“Kleinwuchs”). 

Such a change has not occurred in English—or French or Swedish or Spanish—medical terminology, which is primarily why I use the terms “dwarf” and “dwarfism” on the blog, much to the chagrin of many of my German friends. I have written extensively about make-believe dwarfs and the problem of lookism in both the fantasy genre and the real world. The debate over terms may be never-ending, but hopefully the same will not hold true for the debate over freak shows.

 

 

Recommended Weekend Reading

28 May

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

 

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

 

 

 

 

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.

 

 

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

19 Mar

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

 

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

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

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

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

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

 

 

High Heels Are A Civil Rights Issue

26 Feb

king_charles_i_after_original_by_van_dyck

(Public domain image via)

 

Last week there was much discussion on the blog about the social ramifications of height, but what about high heels? The Women and Equalities Committee of the U.K.’s House of Commons recently found that employee dress codes that require heeled-shoes for women are violating laws banning gender discrimination. The Committee reviewed the matter after receiving a petition signed by 138,500 people and started by Nicola Thorp, a London receptionist who in December 2015 had been suspended by her employer without pay for violating the company’s dress code for women by showing up for work in flats.

I personally find high heels frequently quite becoming. I also personally find them physically hazardous. Pretty much anyone with any sort of orthopedic disability has been advised by their specialists again and again to limit the time they spend in heels to a minimum. While reporting on the U.K. ruling, NBC News let women in on “an essential secret — carrying a pair of trainers in your handbag.” This is cold comfort to those of us who know that back pain is also caused by carrying more than 5% of your body weight in your handbag. One twentysomething friend with an invisible disability was told by her spinal surgeon that she should wear heels pretty much never. Thorp was right to sue on the basis of gender discrimination because only women are required by some employers to toddle about on their toes, but a case could be made on the basis of disability discrimination as well.

That disabled women could be fired—or simply looked upon unfavorably in the workplace for “not making an effort”—is indeed a social justice issue. We in the West have come to regard heels as a sign of female beauty and professionalism not so much because they are inherently smart looking, but because they were invented to signify wealth.

Heeled shoes were designed to be painful and inefficient if you walked around much because the upper classes around the world have traditionally used their fashion statements—from foot-binding to corsets to flowing robes and fingernails—to prove that they were wealthy and didn’t need to labor to survive like the lowly workers. Prof. Lisa Wade offers a wonderful break-down of the history of the high heel at Sociological Images, pointing out that they were first considered manly because men were the first to don them to display social status. Women began wearing them to imitate this status, which led to men abandoning them. Wade explains:

This is a beautiful illustration of Pierre Bourdieu’s theory of class distinction. Bourdieu argued that aesthetic choices function as markers of class difference. Accordingly, the elite will take action to present themselves differently than non-elites, choosing different clothing, food, decor, etc. Expensive prices help keep certain things the province of elites, allowing them to signify their power; but imitation is inevitable. Once something no longer effectively differentiates the rich from the rest, the rich will drop it. This, I argue elsewhere, is why some people care about counterfeit purses (because it’s not about the quality, it’s about the distinction).

Eventually men quit wearing heels because their association with women tainted their power as a status symbol for men. (This, by the way, is exactly what happened with cheerleading, originally exclusively for men). With the Enlightenment, which emphasized rationality (i.e., practical footwear), everyone quit wearing high heels.

What brought heels back for women? Pornography. Mid-nineteenth century pornographers began posing female nudes in high heels, and the rest is history.

In many moments in the history of many cultures, extra pounds of body fat have also signified high social status because wealth was needed to keep someone well-fed. The price of sugar and of meat plummeted in the 20th century in the West and were soon no longer considered delicacies only the wealthy could afford. This coinciding with the eugenics craze in the early 20th century brought about the birth of our modern preoccupation with not just longevity and bodily cleanliness but physical “fitness.” These shifts are why modern fashion dictates that those who wish to project high social status should dress inefficiently, like a traditional aristocrat, while remaining physically strong, slim and active, like a traditional laborer.

High-status men are now encouraged to wear expensive attire in addition to building and maintaining a muscular physique that can get down in the dirt – something the manly dukes and earls of yore would have considered horrifically common. High status women are now encouraged to diet and exercise to be “healthy” in addition to wearing heels to hint at sexiness in their physique via the historical association with both princesses and porn stars – at the risk of breaking down their bodies as they rush off to work and back like the peasant women of yore.

Indeed, our modern fashion rules for professional women are ever so young because upper class women who worked were an anomaly in the Modern Era until the 20th century. The First and Second Wave feminists successfully fought for our right to vote and become actors, bankers, flight attendants, and politicians, but we have yet to expunge the idea that a woman who suffers for beauty is admirable, rather than irresponsible. Nicola Thorp’s petition, however, has dealt it a blow.

Women should feel free to wear heels almost whenever they wish, but disabled women should not have to suffer social consequences for choosing to protect their bodies. True equality may also come when men can wear heels like Mozart and Louis XIV without fear of gay bashing, as long as such a fashion shift does not harden into a fashion decree. If it does, then disabled men will have to use their right to petition against discrimination.

No matter how you personally feel about them, just remember that modern ideas about fashion, gender/sex, class, and disability all meet whenever we consider a pair of high heels. That’s why we call it intersectionality.

 

 

 

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.
 
 
 

 

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.

 

 

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. People of color, 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 German woman was recently punched at a train station near a friend’s house for supposedly 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.
 

Disability & the Politics of Shoe-Shopping

16 Oct

Fashion(Image by Thomas Hawk used under CC 2.0 via)

 

“I like them,” I said, eyeing the smart and slinky black sneakers in my hand, “but my orthotic inserts don’t find inside.”

The saleswoman shook her head sympathetically. “These doctors just don’t understand. They make it so difficult for women looking for shoes.”

Um, I don’t think that’s who’s making it difficult, I said to myself. Because she isn’t the one flooding the market with shoes that discriminate against disabled bodies, it didn’t feel necessary that this one saleswoman be confronted with the issue. But we as a society probably should.

If I don’t wear my orthotics, I burden my achondroplastic back in very unhealthy ways. The same goes if I wear heels regularly, instead of only occasionally, as my orthopedist advises. When I was younger I would often flout the rules, but my tolerance for pain-inducing shoes has lessened since I turned 30 and needed back surgery to avoid paralysis, as one-third of all people with achondroplastic dwarfism do. A friend who has undergone a few operations on her spine absolutely cannot wear heels. Yet wearing orthotics every day is not seen as being healthy and responsible in the same way that, say, running a marathon is.

Will chronic pain management never be seen as bad-ass because it lacks the thrill of breaking records or leaving others in the dust? Or is it because it defies the “no pain, no gain” rule? In which case, foregoing orthotics and swallowing the pain would seem to be the bad-ass choice.

“Oh, I rarely ever wear my orthotics!” two non-disabled women told me years ago.

Eat something sugary or fattening and you can easily attract disapproving looks or even commentary. (“Do you know how many calories/toxins are in that?!”) But risk back pain in a pair of stilettos that make you teeter like a giraffe and you’re suffering for beauty like any self-respecting woman would.

Why? Is it because, as Jessica Valenti wrote last year, too few woman are willing to endure “the social consequences of aesthetic apathy”? Does bodily beauty always require some degree of discomfort? Even the love-your-body yoga crowd pushes the back-to-the-earth barefoot aesthetic, which can be supremely painful for many disabled people.

Fashion is fickle and ever-changing. In a world where humans can find beauty in everything from body-builder biceps to heroin chic, and switch from viewing heels as manly to sexy, it seems possible for us to stop marginalizing and perhaps even some day tout medically responsible choices as fashionable choices. Why haven’t we managed this yet? What will it take to get us there?

 

 

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

9 Oct

  

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

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

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

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

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

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

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

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

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

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

“Thanks for your honesty,” Tom nods.

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

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

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

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

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

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

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