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 Not to Cover the German Election Results Today

24 Sep

german_opinion_polls_2017_election1

(Image by KevinNinja used under CC 3.0 via)

 

We will have the German election results in just under six hours. After the unanticipated success of Brexit and Trump in 2016, many here are terrified that the Alternative für Deutschland will end up doing better than the polls predicted. There is speculation that many of its voters would never reveal their decision to a survey-taker. If the AfD does do better than predicted, it will declare victory – even if over 80% of the country has voted against it.

If this happens, please be thoughtful—not careless—when you consider using Nazi language to describe what’s going on. Some members of the AfD have definitely earned the Nazi label because their rhetoric and policies are flat-out militaristic, authoritarian, and/or racist. But German political scientists are careful to only apply terms like “Neo-Nazi” and “fascist” when it is apt. Much of the foreign media too often uses World War II jargon—like “marching to victory”—to describe any right-wing politics that happen in Germany, while refraining from using it to describe right-wing movements in their own countries. Rule of thumb: If you didn’t use those words to describe the xenophobic politics of Marine Le Pen, Geert Wilders, Brexit, or Donald Trump, think twice about using them now for the AfD. At best it’s lazy and at worst it implies that racism among Germans is worse than racism among any other sorts of people. As nationalist politicians across Europe and the United States continue to threaten democracy, no one can afford to be complacent.

And please beware the term “refugee crisis.” Over one million Syrians have arrived in Germany and guess what? Very little has changed. I live a few blocks from a refugee housing unit and couldn’t name one difference in my everyday life since the doors were opened. Perhaps I pass by more refugees than I realize on the street – but they’re not really any different looking from any of the other immigrants and expats. To be fair, many refugees are certainly experiencing crisis. The war in Syria is a crisis. The horrid conditions along the Balkan Route constitute a crisis. The bureaucratic mess paralyzing several authorities that refugees are required to deal with is a crisis. But when you broadly use the word “crisis” to refer to the arrival of people in Germany, you’re doing white supremacist groups like the AfD a huge favor.

Some other fun facts you might miss? Germany’s voter turnout over the past decade has been consistently higher than in the U.K. and the U.S. All voters over 18 are automatically registered here and receive the address of their polling place via mail. Because Germany has a coalition system, every voter gets two votes. The polls have consistently projected the two largest parties, the Christian Democrats (CDU) and the Social Democrats (SPD) to garner the most votes, while the four smaller contenders have been separated by a mere 1%. (The graphic above of the recent polls illustrates this well.) If the AfD shoots ahead, this will be newsworthy. If it comes in third place but only by 1 point, that should also be noted in all post-election analysis. Failure to note it will only help the AfD create a narrative of overblown success.

In politics, as often in life, narrative is everything.

 

 

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.      

 

 

I Never Thought Marriage Equality Would Come to the U.S. before Germany

2 Jul

Berlin Pride(Image by Berolino used under CC 2.0 via)

 

I never thought the U.S., my country of birth, would enact marriage equality before Germany, my country of residence. And yet here we are. When I moved here 12 years ago, same-sex civil unions were legal across the country and the mayors of Berlin and Hamburg, the two largest cities, were both openly gay. The country was four years away from the election of its first openly gay vice-chancellor. Back in the U.S., the Supreme Court had only just decriminalized homosexuality nationwide, same-sex marriage bans were spreading across states, and the president was pushing for a nationwide ban in the form of an amendment to the Constitution. The hard-won victories we have seen since are worth every moment of celebration, but the backlash has been loud and angry.

When it comes to gender equality, Germany is hardly in the midst of such a heated culture war. Restrictions on reproductive freedom or sex education rarely make it into the national debate. Paid parental leave is generous and available to both mothers and fathers. Those who find marriage antiquated or unnecessary are widespread among Germans of all income levels and political persuasions. I know young, white-collar couples with four children and conservative couples in their 60s who have never gotten around to getting married. Among those who are married, it is not hard to find men who have taken their wives’ surnames or created a hyphenated name, like the head of the Protestant Church. Few noticed when Germany became the first European nation to add a third gender option on birth certificates. I have met my share of men here who have nothing nice to say about feminism (or “genderism,” as they sometimes call it), but I have met far more who actively embrace it. Men like the dad who famously wore a skirt in public so that his little boy would feel safe doing so.

But anecdotes about cultural values can be problematic. Personal experiences can depend heavily on the social circles you tend toward. Liberal cities like Berlin and New York both have corners where LGBTQI people are threatened. And as the geographical crossroads of Europe, Germany’s political landscape is varied. The home of the Lutheran Church is also home to Alpine and Rhineland Catholics, and atheists of the former East Germany. The loudest opposition to marriage equality here has come from Catholic bishops and the fledgling far-right, anti-immigration party Alternative für Deutschland (AfD). The AfD has moved to challenge this week’s marriage equality law in court. Legal experts are divided as to how successful they could be. The AfD’s polling numbers have dropped to 7%. Meanwhile, 44% of its voters support marriage equality, and its current candidate for the national election in September happens to be an openly lesbian woman who is in a civil union with a woman from Sri Lanka.

A national study released this week found 83% of Germans support marriage equality. Four of the five parties represented in the Bundestag – the Greens, the Left, the pro-business Free Democrats, and the center-left Social Democrats – stated their official support before the Bundestag vote. While only 75 of the 309 members of Angela Merkel’s center-right Christian Democrats voted yes, a survey of their supporters in the general public revealed that 73% were for it. This in a party named for its traditional association with the Catholic Church. All in all, support for marriage equality in Germany is widespread and significantly higher than in all but five of the 21 countries that already had marriage equality before this week.

This explains why marriage equality has taken so long here. Since the horrors of the Nazi regime as well as Communist East Germany, politicians in the Federal Republic have generally sought to be more pragmatic than ideological. Social change is usually slow and incremental for the sake of consensus-building. This is done for the sake of preventing angry backlash and deep divisions.

Of course, this gradual approach can be deeply upsetting for those waiting on their human rights. A couple in their thirties seeking to adopt wants to have a family now. A patient dying of AIDS wants the partner who stood by him to be legally protected from whatever objections his family may have now. As many politicians argued during the Bundestag vote, offering same-sex couples the right to marriage instead of mere civil unions is a way of proving that Germany not just tolerates them but accepts them. That such couples and families have had to wait for others to accept them is as much a moral problem as it is a historical fact.

100 years ago Berlin was home to the first gay rights magazine, the first LGBT film and the first LGBT neighborhood. Many have deemed it the gay capital of the world at the time and some historians claim it was on the brink of becoming the first Western jurisdiction to legalize homosexuality in 1929. But then. We know what happened. Berlin sent its LGBT citizens to death camps. The quiet street where I live is scarred by plaques naming the victims, Nazi and Soviet bullet holes, and the exact place where the Wall later stood. When I moved here 12 years ago, it was renowned for being East Berlin’s gay district. It is a conglomerate that tells a story and shows that all cultural values rely on the intersection of when and where. This is why human rights must be vigilantly protected, never taken for granted. And why every place on earth has the capacity to change.

 

 

“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.

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.

 

 

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.

 

 

Some of the Latest Ideas about Reducing Racism

26 Mar

Our Public Schools are Still Separate and Unequal(Image by Joe Brusky used under CC 2.0 via)

 

I Loved My Grandmother. But She Was A Nazi.” This is the title of this weekend’s excellent op-ed in the New York Times by Jessica Shattuck. She writes, “My grandmother heard what she wanted from a leader who promised simple answers to complicated questions. She chose not to hear and see the monstrous sum those answers added up to. And she lived the rest of her life with the knowledge of her indefensible complicity.”

I live in Germany, where many if not most of my friends and family members could have written that. Here in Berlin, if you call your grandparents’ generation “the greatest”—as so many do back home in the U.S.—you might as well slap a swastika on your chest. Or try to argue that the earth is flat. The Sixties generation in West Germany shared their American counterparts’ love of rock music and peace signs, but their top priority was to expose how many of their professors, teachers, and public officials were former Nazis. If the cost of expunging Nazi thought meant the end of both nationalism and nostalgia, so be it.

While the Sixties movement left a lasting impact on German politics, education, and the media, Germany today could hardly be considered racism-free. Last year, there were 857 attacks on refugee homes perpetrated by right-wing extremists nationwide. Plenty of non-white and non-Christian residents tell of the prejudices they too frequently face. The Alternative für Deutschland (AfD) party has joined the global nationalist movement, calling for a return to the good old days when no one had to hear about celebrating diversity.

But the AfD is considerably less popular than nationalist parties in other countries. With every party in the Bundestag having pledged to never work with it, and with its best national polling numbers peaking at only 12% last fall, it stands no chance of winning the national election in September. The greatest fear is that the once fledgling party will come in third or fourth and garner well over 5% of the vote, which is the minimum required to be granted seats in the Bundestag. Human rights activists are right to believe than any success for the AfD will be a dangerous validation of ideas no citizen should embrace. But British and American nationalists have been far more successful in their respective countries as of late. Is there something anti-nationalist and anti-racist activists could learn from their German counterparts?

No one can say with any accuracy that German society is less racist than others. Proving one country is less racist than another is difficult to the point of nearly being impossible. But it is heartening to see the AfD’s approval ratings nowhere near a majority. I have asked many Germans how they have come to stigmatize nationalism so successfully. Don’t people get touchy? Don’t most people excuse away the Holocaust by arguing that most Germans never saw a concentration camp? Don’t most people tend to understand it from their grandparents’ perspective? One German explained the approach to me as “Verstehen, aber kein Verständnis,” which can be translated as “understand (as in comprehend) but without understanding (as in sympathizing).” One could describe Shattuck’s op-ed piece this way.

Some of this could be linked to a greater willingness in German culture to talk about problems, no matter how unpleasant. While American and British children are often told, “If you don’t have anything nice to say, don’t say anything at all,” many Germans would consider this evasive to the point of being dishonest. Germans are raised to mean what they say and say what they mean, and are thus likelier to believe that airing dirty laundry is the only path to improvement. Never does one hear, “I was just saying it to be nice.” As Sabine Heinlein wrote earlier this year in the Daily Beast:

It has always struck me as odd how timid most Americans become when asked to object to something, even politely. At the dinner table, I’ve noticed, what Germans call a discussion, Americans call an argument.

I know I am often perceived as harsh because I speak my mind. But I also see how the very thing that makes America great—its people’s quiet acceptance of other beliefs, their overwhelming friendliness, their effort to always get along—now threatens to become its downfall. I loathed having to read my friends’ whiny Facebook posts about how they were dreading Thanksgiving because of the elections. “Boohoo, I have to talk about politics to someone who thinks differently than I do!”

Here, this German said it. Will you still like me? I am asking because I believe what stands in the way is Americans’ compulsive need to be liked. At moments like this, though, we need to learn to object and intervene—whether in public protest or simply around the family dinner table.

Americans do generally prefer to emphasize the positive. We like to think of our ancestors and ourselves as the Good Guys. But while it is true that my grandparents fought on the opposite side of the Nazis, their generation cannot honestly claim to have been innocent of racism. Many U.S. veterans returning from the liberated concentration camps and the Nuremberg Trials understood them as proof of why they had to help end segregation across the United States. Others returned and hurled tomatoes and death threats at 6-year-old Ruby Bridges as she attempted to enter an all-white school. To such white supremacists, World War II was not reason to consider that the Nazis had modeled many of the Nuremberg Laws on Jim Crow. It was proof of America’s inherent superiority.

Some Americans face our long history of racism, some mention it as a footnote in the otherwise Great American Story, and others go so far as to question its relevance. The night Trump was elected president, I was told by one of his white supporters that discussing racism divides the country. Yet race issues have been proven to be a strong motivator among many such voters. More than age, location, religion, economic status, level of education, or party affiliation, the most common factor uniting Trump voters was feeling threatened by the fact that whites are projected to no longer dominate the U.S. population by 2042. Of course not all Trump supporters share these feelings, but they risk repeating the mistakes of Shattuck’s grandmother when they refuse to confront the dangers they pose.

White people in the U.S.—and across the Western World—are taught by their culture that their skin color, ethnicity, and/or religious background is the standard. Consequently, they often envision multiculturalism as merely welcoming some people of color into their everyday reality without altering the centrality of their role in the narrative. Getting them to question this can be hard. Dr. Robin DiAngelo has written extensively about the white fragility she often encounters when teaching anti-racism workshops in the U.S. and how quickly this fragility can unleash obstinacy and outrage. But if white people want racial equality and racial justice—if we want to practice what every democracy on earth preaches in their non-discrimination laws—then white people need to be willing to approach racism from perspectives other than their own. And in order to do that, we have to be willing to engage with ideas that may make us uneasy.

Zadie Smith’s 2016 novel Swing Time is the story of a girl who grows up in a poor end of London with her black Caribbean mother and white British father. Her white friend Lily “solemnly explained to me one day as we played, that she herself was ‘color blind’ and saw only what was in a person’s heart.” But when the biracial girl wants to watch a musical with an all-black cast, Lily refuses: “Why was everybody black? It was unkind, she said to have only black people in a film, it wasn’t fair. Maybe in America you could do that, but not here, in England, where everybody was equal anyway and there was no need to ‘go on about it.’ ”

I could have thought, if not said, something like that at Lily’s age. With slogans like “one race: human,” colorblindness was hailed in classrooms in the 1980s and 90s as both the right goal for society and the right tactic for ending racism. And so I recall feeling concerned when a character on the sitcom Hangin’ with Mr. Cooper talked about being proud of being black, thinking that surely any racial pride was akin to racism. I was disconcerted when Family Matters portrayed Santa Claus as black. My thoughts on the matter shifted as my brain matured to handle more nuanced ideas and I encountered more detailed arguments from people of color. This helped me eventually understand how the predominance of white people in mainstream culture in the U.S. had blinded me to the experiences of people of color, which were far more different from my own than my younger self had assumed. I realized I had never considered how it might feel to grow up with a Santa Claus—and a throng of national icons—who did not share my racial status.

Some white people are reticent to discuss race at all because, like Lily and I, they were taught that any generalizations about any people are just as taboo as inaccurate stereotypes about traditionally marginalized groups. Other white people may be reticent because they are terrified of ending up the butt of the joke in revealing videos or interviews about white myopia. Such wariness is well-known to activist Jay Smooth, who explains:

Anytime we are dealing with race issues, we are dealing with a social construct that was not born out of any science or reason or logic… The race constructs that we grapple with in America were designed specifically by a desire to avoid making sense. They were shaped for centuries by a need to rationalize and justify indefensible acts. So when we grapple with race issues, we are grappling with something that was designed for centuries to circumvent our best interests. It’s a dance partner that’s designed to trip us up.

If we deconstruct all that maintains the unequal distribution of power based on race, white people will find themselves in situations unfamiliar. Anxiety at such a reality should never shut down the conversation, but it too often does. Seventy years after Hitler gave racism a bad name, how many of us are willing to strive for racial justice beyond the boundaries of our comfort zones? How many of us are willing to listen more than we speak? How many of us are willing to endure this as often as necessary? How do we open the minds of those who become instantly defensive in such debates? I was recently asking these questions with friends and then, as if the Internet was listening in, this meme popped up in my feed:

 

Morgan M Page
What do you think? Can we do it?

“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.

 

 

Will the Netherlands Be the Next Country to Greenlight Nationalism?

12 Mar

 

 

Dutch voters go to the polls this coming Wednesday for the general election, and long-time nationalist candidate Geert Wilders has a better chance of coming in first or second than ever before. A first-place finish would be no guarantee of his becoming prime minister thanks to the multi-party coalition system in the Netherlands, but it would prove surging support for his policies. On his agenda is leaving the EU, closing the border to all refugees as well as all immigrants from Muslim countries, closing mosques and Muslim schools nationwide, and banning the Koran. He was convicted of hate speech by a Dutch court earlier this year for his utterances in the video above.

No candidate will ever be endorsed on this blog, but politicians who promise to roll back the rights of minorities will be called out and the danger assessed. In the ongoing debate over the best counter-strategy to the rise of xenophobia in Europe and the U.S., James Traub argued earlier this week in The New York Times that calls to simply celebrate diversity are partly to blame for the crisis. He views right-wing nationalism as a backlash against “the unquestioned virtue of cosmopolitanism,” writing:

The answer to xenophobia cannot be xenophilia. For mobile, prosperous, worldly people, the cherishing of diversity is a cardinal virtue; we dote on difference. That’s simply not true for many people who can’t choose where to live, or who prefer the familiar coordinates of their life. That was the bitter lesson that British cosmopolites learned from Brexit.

Other critics have demanded similar compassion for the little old white lady who reports feeling uncomfortable when her daily bus ride has her surrounded by people speaking Arabic/Farsi/Somali and wearing headscarves. Yet is she much different from the little old lady who reports feeling uncomfortable when her daily bus ride has her surrounded by people talking in slang and playing techno/hip-hop/k-pop/whatever the kids are listening to these days? Indulging such concerns with legal action quickly devolves into infringements on freedom of expression. Society does best when citizens simply shrug at the sight of new piercings or the sound of a foreign language.

Yet no society has managed to rid itself of the Fear of the Other that convinces a good proportion of its citizenry that the new immigrants will never integrate or that youth culture is more depraved than theirs ever was. A hippie friend’s parents were regularly told in the 1970s, “If my kid ever dressed like that, I’d break his legs!” It feels strange when Americans my age try to imagine that the Beatles were ever considered a moral threat or that jazz was once branded “devil’s music.” It feels just strange when we hear comedian Dara Ó Briain tell of a British shopkeeper who suspected him of being an IRA terrorist based on his accent, or to see the 19th-century scientific articles that claimed the Irish were biologically closer to apes than humans.

Indeed, fear of the Irish was once rampant in Britain and the United States, based on the assumption that most were poor, uneducated, prone to violence at home and in the street, and/or terrorists. Their religion was also deemed a threat on both sides of the Atlantic. History has shown that isolating the Irish both as a nation and as immigrants would not have solved the crisis. On the contrary, Ireland has been one of the EU’s greatest success stories, transforming from the poorest country in Europe to one of the richest. This has coincided with an expansion of democratic reforms and human rights, including gender equality. Ireland was just ranked far ahead of the U.K. and the U.S. on the Democracy Index, and in 2015, what was once one of the most religiously conservative countries in the world became the first country to legalize marriage equality via national referendum in a 2 to 1 vote.

The Netherlands, meanwhile, has long led the continent in LGBT rights and, unlike most nationalist politicians, Geert Wilders has weaponized this, arguing that Muslims threaten these rights. His late predecessor, Pim Fortuyn, was openly gay and based his right-wing populism on the same ideology.

Many voters will be tempted by Wilders’ promise to protect Dutch gender equality by expunging Muslim extremists from the country. But such a policy is not only racist and undemocratic, but hazardous and hypocritical because a) it disregards both the work and rights of feminist and LGBT Muslims, and b) it says nothing about expunging non-Muslim  groups that oppose gender equality like the Christian Reformed Churches of the Dutch Bible Belt or the Neo-Nazis. If Wilders and his supporters are sincerely concerned about threats to LGBT rights, they would do well to partner with the Maruf Foundation and the European Queer Muslim network, rather than the right-wing populists of Europe and the U.S. who are far likelier to dismantle Western laws protecting gender equality than any Muslim extremist group.

Germany’s Alternative für Deutschland and Sweden’s Sverigedemokraterna argue for a return to traditional gender roles. Marine Le Pen pledged last week to nullify all same-sex marriages in France. The former and current leaders of Britain’s UKIP have repeatedly galvanized homophobic sentiment. Donald Trump used the Pulse night club massacre in Orlando last summer to argue for his proposed Muslim ban while at the same time partnering with Mike Pence and other leading members of the American Religious Right, who have been blaming feminism and LGBT equality for most of society’s problems since the 1980s.

Any gender equality movement must protect and support women and LGBT citizens of all ethnicities and faiths. This can only be done with a humanitarian immigration policy. The best hope for combating misogyny and homophobia anywhere is to support human rights activists everywhere. The best hope for successfully integrating immigrants is to learn from the past how it was done before. And to understand that xenophobes throughout history pick different targets but always say the same thing.

In 1751, Benjamin Franklin issued one of the very first warnings of the dangers of immigrants arriving in the United States, asking:

Why should [they] be suffered to swarm into our settlements, and by herding together establish their languages and manners to the exclusion of ours? Why should Pennsylvania, founded by the English, become a colony of Aliens, who will shortly be so numerous as to … never adopt our language or customs, any more than they can acquire our complexion?

He was talking about immigrants from German-speaking regions of Europe, whom he did not consider “white people,” classifying them along with Italians and Swedes as “swarthy” and dismissing them as “generally of the most ignorant stupid sort of their own nation.” The influx of Germans into the U.S. did end up flooding the country, but it did not end up destroying democratic values. The resilience of the fear of immigrants has proven time and again to be the greater threat to universal human rights. A strong showing for Wilders on Wednesday would, too.

 

 

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.