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Don’t Be A Sucker

20 Aug

 

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

 

 

 

 

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.      

 

 

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.

How Far Can Our Imagination Go?

16 Apr

 

Years ago on The Daily Show, comedian Lewis Black offered a weak defense of using the R-word. In his tirade, Black yuk-yukked about the idea of a show starring developmentally disabled people. His joke was hilarious if you find the sheer idea of such a show hilarious.

Well, this week the German disability advocacy organization Aktion Mensch has published a video that asks, “What if disabled people got to be the stars in Hollywood movies?” As examined before on the blog, it is a genuine problem that almost no famous actors are disabled and almost no disabled actors are famous. So with that I leave you all the video above and best wishes for this holiday weekend.

 

 

Tax Day!

9 Apr

HELLO! HUMAN RIGHTS (Image by Andres Musta used under CC 2.0 via)

 

As Tax Day approaches in the United States and here in Germany, everyone will have an opinion as to which entities deserve public funding, and which are impractical, immoral, or evil. It is perhaps easier for me to remember that taxes not only support disabled people. Through health care, medical research, social work, education, and the justice system, they keep many alive. And they also help lessen the everyday physical pain experienced by some of us.

Even banal subsidies can make a substantial difference. As a German resident classified with a “Grade 50” disability, my ticket for all public transportation in the Berlin metropolitan area is subsidized so that I pay a fraction of the normal fee. This discount offsets the extra costs I regularly incur by needing to use taxis or a car rental for distances most other 35-year-olds would either walk or bike. By relieving me of this financial burden, I can have as much money saved as a pedestrian does to spend on food, clothes, rent, movies, music, houseplants, hair curlers, napkin rings, bubble gum, sealing wax, bath toys, or presents for my loved ones. Alternatively, it saves me the extra time I would have to spend walking and then recovering from the pain of walking – time which I can use to be more productive, which helps me qualify as a taxpayer capable of paying it forward to others in need of subsidies.

I have been called a freeloader. A disabled friend was told she should realize “what we have to do for you” – “we” being the non-disabled taxpayers. Many political theorists argue that the extra costs faced by disabled citizens should only be offset by privately run charities funded by donations from those who actively choose to be so morally upright. Others go so far as to advocate Social Darwinism, which would be a death sentence for many disabled people.

The intricate relationship between government and tax structures have occupied economists, political scientists, academics, philosophers, monarchs, and politicians since the legend of Robin Hood, and I have no intention of tackling it in its entirety here. But amidst the myriad points and counterpoints, one truth remains clear to me: A society that agrees to ease some of the burdens disproportionately placed upon disabled people is agreeing to ensure the existence of disabled people. And by doing so as the general public in a mandate to itself—instead of leaving it to the “good will” of a few individuals—this society tells disabled people they should be no more grateful to be alive than anyone else should. That message is crucial. While we all have varying abilities that shift in value throughout time and space, equality means that no one is altogether more important than anyone else. We must believe this if we want to claim to believe in human rights.

 

 

“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.

 

 

Rare Conditions & the Tyranny of the Majority

5 Mar

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

 

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

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

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

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

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

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

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

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

 

 

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.
 
 
 

 

Which Books Have Opened Up Your Mind?

12 Feb

Americanah(Image Sarah Mirk used under CC 2.0 via)

 

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

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

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

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

 

 

 

Tuesday the U.S. Senate Will Vote on Betsy DeVos… and the IDEA

29 Jan

 

Tuesday the U.S. Senate will vote on Donald Trump’s candidate Betsy DeVos as Secretary of Education. DeVos’ answers during her Senate confirmation hearings earlier this month galvanized disability rights groups, who were horrified by her seeming ignorance of the Individuals with Disabilities Education Act (IDEA). When the law was passed in 1975, only 20% of all disabled children in the U.S. had access to public education. Thirty organizations, ranging from the American Academy of Pediatrics to the National Center for Special Education in Charter Schools, signed a letter sent to the Senate Committee on Tuesday, requesting a delay of the vote on DeVos until she has answered more specific questions regarding the federal law. DeVos sent a letter to the Committee chair on the same day, endeavoring to clarify her positions.

This all occurred the day after disability rights and issues disappeared from the White House website. Disability Scoop reports:

The outgoing administration’s site featured information on expanding education and employment opportunities for people with disabilities, enforcement of the Americans with Disabilities Act and a video tour of the White House in sign language, among other materials.

Now, however, links to the disability pages return an error… Searches for disabilities or disability on the new version of whitehouse.gov yield just nine results including two related to Grover Cleveland.

The American Association of People with Disabilities and other advocacy groups said DeVos’ letter failed to allay their concerns. DeVos has a long history of promoting school voucher systems, which use public funds to send children to private schools, while requiring families to waive rights and protections they are afforded by the IDEA. Because school voucher systems promote free enterprise for school administrators over adherence to federal guidelines, they have their roots in the states most famous for advocating on behalf of states’ rights. Florida has the oldest school voucher program for disabled students in the U.S. and in 2011 a Miami newspaper uncovered widespread corporal punishment. Corporal punishment was banned in schools in the counties in question, but teachers in the voucher system insisted they were not bound by any government law. Pro-voucher system sites insist the rate of corporal punishment is lower than in public schools in Florida, which does not ban corporal punishment statewide.

Independent disability advocacy organizations have generally argued that the voucher system has yet to prove helpful to those they represent. Disabled citizens, after all, are the first to be harmed by a system that encourages competition based on individual ability over universal civil rights protections. A study by the National Council on Disability concluded:

…it is not at all clear whether existing private schools want to serve students with disabilities or indeed can provide their specialized services and needed supports in the absence of the kind of critical mass enjoyed by school districts. IDEA, for example, recognizes the importance of family participation in the child’s educational plan, but also legitimizes the expertise of specialized staff and personnel who have specific knowledge and competencies for providing a free, appropriate public education (FAPE) to students with disabilities. To place the burden on parents to seek out a private alternative to provide the kind of specialized educational program needed to serve their students with disabilities may be unreasonable. In Florida, the special education vouchers are apparently providing the stimulus for new schools to come into existence to serve only students with disabilities. This movement, however, could reverse the scientifically documented findings supporting the provision of educational services to students with disabilities in the least restrictive environment of inclusive opportunities. The end result of large-scale voucher extensions to students with disabilities could lead to a new kind of institutionalization at public expense.

To be fair, the parents of many students with disabilities in the United States advocate for voucher systems. American conservatives tend to show more support for voucher programs out of a preference for the free market over government regulation and/or for specific religious instruction over an unaffiliated curriculum. These preferences also motivated the primarily conservative opposition to the U.N. Convention on the Rights of Persons with Disabilities. However, Valerie Strauss of The Washington Post argued earlier this week that criticism of the voucher system is bipartisan because both Democrats and Republicans are to blame for weakening public education as a civic institution over the past two decades, ultimately paving the way for candidates like DeVos.

 

 

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. Non-whites, religious minorities, women, LGBT citizens and those of us with disabilities know that the concept of universal human rights is younger than many people they know. A few wrong turns and authoritarians could turn all the progress of the past 50 years into a mere moment in human history when the law offered to protect us against violence, harassment, medical abuse, and other existential threats.

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

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

  

U.S. Election Night 2016

6 Nov

 

This Tuesday night I’ll be featured live in English on Deutsche Welle’s U.S. Election Night Special, commenting on the results and what they mean to me as a U.S. citizen living in Berlin. I’ll be giving interviews between 6 pm and midnight EST (0:00 and 6:00 CET).

Deutsche Welle is broadcast internationally throughout Europe, Asia, Africa, Oceania, and the Americas. You can watch its live stream here.

 

 

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.