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Enough with the Myths about Disability

27 Oct

 

Here I am discussing some of the most common misconceptions about people with disabilities on Germany’s Deutschland3000 program. Like, share, spread the word. (English subtitles available with Auto-Translate via the tools icon.)

 

 

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Banned Books Week Should Fight Censorship & Simplistic Thinking

23 Sep

 

Today the American Library Association kicks of its annual Banned Books Week to spread awareness of the dangers of censorship. Each year the ALA releases a list of the top ten books that were most often requested to be removed from U.S. libraries—usually school libraries—by parents and political activists alike. In 2017, the majority of the most challenged books were stories about LGBT acceptance. However, as with nearly every year, a few titles on the list were targeted for use of racial slurs.

I love Banned Books Week if anything because discussing these issues is crucial. I do believe every public library should be free to contain every book humanity has ever brought forth. But, as examined before, those opposed to censorship should not assume the solutions are simple like censors do.

When it comes to kids, you’d have to look hard to find someone who believes that no one should ever take a child’s age and developmental level into account when selecting stories for them. I save many of my favorite books for the children in my life until they are old enough to appreciate them fully because infants, toddlers, and pre-schoolers can get scared or—more likely—bored if they can’t follow along. Most children in primary school do not understand sarcasm, which is why Stephen Colbert did not let his kids watch The Colbert Report.

Children are a diverse group, so of course many kids will be ready earlier than others to handle mature topics. But just as I believe it takes a mature mind to understand the  BDSM portrayed in Fifty Shades of Grey, I believe there is a world of a difference between an older child who is ready to learn about the nuances of racism and a young child who will likely repeat the N-word without giving it much thought, and think it’s funny if it elicits shocked expressions among grown-ups.

With all this in mind, Banned Books Week should be about debate, endless and free.

 

 

“Midget-Wrestling” Events Canceled in the UK

16 Sep

Learn respect (Image by Duncan C used under CC 2.0 via)

 

Thanks to an online public outcry organized by members and supporters of the Restricted Growth Association, a handful of “midget wrestling” events have been canceled in the United Kingdom. The objectification of people with dwarfism in freak shows spans from the Early Modern Era’s court jesters well into the present day at dwarf-tossing events, “mini” cover bands, dwarf theme parks, and on reality TV shows. This is the first time in recent memory a certain freak show has not simply been condemned by human rights activists but in fact terminated. 

As Erin Pritchard writes in The Independent: “We do not put people who use wheelchairs, people who are deaf or blind, or people with learning difficulties on a stage and laugh at them.”

Then again, let’s not give the reality TV producers any ideas.

 

 

Dwarfs in Art & Shakespeare

19 Aug

 

Leaving you this weekend with a tip to watch Dwarfs in Art: A New Perspective, which airs tomorrow night on BBC 4. I’ve long documented portrayals of dwarfs throughout history on the blog and this documentary promises to go into greater detail. Several of the portrayals of dwarfism are well-known enough to have become stereotypes dwarfs must combat with regularity – which is quite absurd when you consider how rare the condition is.

Featured in the documentary is academic Tom Shakespeare, who regularly writes about disability and bio-ethics, and has achondroplasia like I do. He is a professor at the University of East Anglia and a frequent contributor on the BBC with thought-provoking arguments on issues ranging from physician-assisted death to religion vs. spirituality to bucket lists. I’ve featured an interview with him from his project Disability and Sexuality (see above) because he deserves recognition far beyond the British Isles.

 

The Meaning of Louise Brown’s Birthday

29 Jul

happy birthday
(Image by Nerissa’s Ring used under CC 2.0 via)

Forty years ago this week, Louise Brown was born in Oldham, England, the first human ever conceived by invitro fertilization. Since her birth, over 8 million people have been born thanks to invitro fertilization or other assisted reproductive technology. I can attest that if you have recently become a parent after a long journey trying to become one, it is particularly hard not to get choked up at hearing the recording of “Happy Birthday” sung to Baby Louise by her family and friends back in 1978.

And yet. Brown’s parents and the doctors who helped them become parents got hate mail and death threats. The hospital received a bomb scare. Brown’s father had to arrive under police protection. To this day Brown reports she is trolled online.

Advances in reproductive technology since Brown’s birth have helped create families for people facing infertility and deadly heritable diseases, single women, and same-sex couples. All such people are targeted regularly by various political groups—some vicious, some peaceful—who deem them “unnatural.” Yet no one on earth could tell the difference between a person who was conceived via IVF and a person who was conceived via sexual intercourse by meeting them.

As examined previously on the blog, adoptive families also have a long history of facing down those with horrific ideas about nature involving the importance of bloodlines and, as one commenter to The Atlantic put it, “inferior genetic stock.” Social and medical interventions in making families are indeed complex and merit nuanced discussions. But the vitriol involved in such discussions just goes to show that there are too many out there who can’t handle the idea of families unlike their own.

In Dwarf News

22 Jul

 

John Oliver kicked off the month with an excellent report about the complexities of gene editing. (See above.) Unlike most reporters of these issues, he manages in few words to explain precisely why ridding the world of genetic mutations like deafness and dwarfism should not be the solution to the problem of society’s hang-ups about bodily differences.

Meanwhile, Andrew Solomon’s Far From the Tree, which I have referred to as The Best Book of the 21st Century, has been adapted into a documentary out this week in the U.S.

In less wonderful news, a Silicon Valley paper has uncovered an Amazon proposal for a newly patented robot that throws warehouse products into bins. The hypothetical item referred to 17 times in the illustrations that the robot could throw is a dwarf. Little People of America is not amused. Kudos to reporter Ethan Baron for shedding light on an issue few would more than laugh at.

 
 

 

Jerry Maren Was A Munchkin & A Mythbuster

10 Jun

 

The death of Jerry Maren at age 98 last month was just reported this week and has been making headlines because Maren was the last surviving actor who played a Munchkin in The Wizard of Oz. Despite other roles ranging from Buster Brown commercials to Seinfeld, Maren said nothing topped telling people he had acted in The Wizard of Oz.  Like most of the cast, he had never heard of the story before he was cast as a member of the Lollipop Guild (see above).

In the United States, The Wizard of Oz is one of the most well-known films of all time—only Star Wars is cited more often in pop culture—so it’s unsurprising that even a tangential association with it ignites stars in people’s eyes. This is only problematic insofar as the Munchkins—along with Oompa-Loompas and the European fantasy tradition of Dwarves—are one of the first things most people think of when they hear about dwarfism. And the film does perpetuate the widespread myth of short-statured people constituting a race that lives separately from average-sized people. The ubiquity of this myth is why most people are surprised to hear that 80% of all people with dwarfism in the U.S. are born to average-sized parents. In L. Frank Baum’s books, Munchkins do originate from Munchkinland, but there are also individual Munchkins integrated into all walks of life across the land of Oz. One of them is a general in a militant army of feminists. Progress?

Jerry Maren, however, did not only contribute his role as a Munchkin to dwarf history. With fellow actor Billy Barty, he helped found Little People of America, the first and largest dwarf advocacy organization in the United States. As someone with dwarfism, my life was far more greatly impacted by this than by the Munchkins.

According to The New York Times, Maren also campaigned against rumors spread by Judy Garland that the Munchkin actors were lecherous and alcoholic:

In his book, Mr. Maren blamed a troubled Judy Garland, who played Dorothy in “The Wizard of Oz,” for erroneously painting her dwarf castmates as miscreants. Referring to a 1967 television interview in which she told Jack Paar that the Munchkins “all got smashed every night” and had to be “picked up in butterfly nets,” Mr. Maren wrote: “Judy was telling it according to her pills and booze that day. She left behind a legacy of untruths about us.”

That stereotype of people with dwarfism as horny little drunks goes back to Victorian era, if not farther, and is still commonly found today in the freak show portrayals found on reality TV and MTV, at dwarf-tossing events, etc. Kudos to Maren for calling a star as big as Garland out on this. Hopefully the film’s millions of fans interested in what went on behind-the-scenes are just as interested in facts as fiction.

 

 

Rebecca Cokley & Never-Ending Diversity

28 Jan

Light Box Body(Image by Luca Rossato used under CC 2.0 via)

 

Leaving you this weekend with a link to an excellent personal essay and video published at CNN.com last month by Rebecca Cokley, a civil rights lawyer who worked in the Obama administration. The granddaughter of a segregationist judge, Cokley has achondroplasia and her average-size husband is African-American. She writes about the ramifications of these intersections for her two children who also have achondroplasia. She writes about the doctor who planned to sterilize her without consulting her. And she writes about the mistreatment she experienced at last year’s Women’s March:

People often act as though disabled people don’t have a right to bodily autonomy. When I attended the women’s march in D.C. in January, I was repeatedly grabbed and manhandled by women who wanted to know where was my mommy and why didn’t I know better than to wander away from her. They all looked shocked when I responded, “I am the mommy,” but not a single one apologized to me.

In the video, she also delves in to the many ways in which she and her family are privileged.

Profiles of people with dwarfism are rarely brave enough to venture beyond the comforts of human interest stories and into the very real but hard political realities. (I know. I google them weekly.) And most headline the subject as “small but [insert compliment here].” This piece is definitely worth your time.

 

Aziz Ansari, #MeToo and the Problem of Empathy

21 Jan

(Public Domain image used under CC0 1.0 via)

 

Over this past week, articles about the allegations against Aziz Ansari by a woman known by the pseudonym “Grace” were the most read articles at The Atlantic, Slate, Salon, The New York Times, The Guardian, The Washington Post, New York magazine, and pretty much every feminist website from Jezebel to Bustle. Everyone from Whoopi Goldberg to Samantha Bee to Dr. James Hamblin participated in the discussion at some level, myself included.

Do you want to know what I think? I think feminist Jill Filipovic has summed it up best. But I also think it’s far more important to note that not one of these sites picked up National Public Radio’s week-long report on the epidemic of rape and sexual assault against developmentally disabled people, who are seven times more likely to be sexually abused than the general population, according to the U.S. Department of Justice. NPR kicked off the story by calling it “The Sexual Assault Epidemic No One Talks About.” Mainstream feminism proceeded to not talk about it, proving the point fantastically well.

Why has this excellent, in-depth report gone unnoticed while Ansari and Grace could only have garnered more attention if they were running against each other for president? You don’t have to be The Huffington Post to know that readers will pretty much always prefer a story involving a celebrity than a story about ordinary people, social groups and statistics. I knew too well that just putting Ansari’s name in the title of this article would up its chances of survival. Barbara Ehrenreich has been complaining since day two of the #MeToo movement that “there are far too many think pieces about high-level actresses and far too few about the waitress at your local diner.” Readers are also more likely to click on stories involving young adults and/or sex than stories about older people and/or anything bereft of sex. Ginia Bellafante complained this weekend about the endless analyses of Grace’s night with Ansari in contrast to the relative silence about the life and legacy of Presidential Medal of Freedom winner Dr. Mathilde Krim.

Anna North, who covers gender issues at Vox, argued for the relevance of the Ansari story, saying, “I mean, honestly, my first reaction was just sort of recognition. This is a situation that I’ve heard from my friends. This is – the behavior she describes through Ansari is behavior that I’ve heard men confess to in their own lives. So I thought, like, yep, this feels real familiar.” While this does validate discussions about dates like the one Grace had, it also explains the sad truth as to why it managed to bury NPR’s story about a sexual abuse epidemic. It is safe to say the majority of young adults writing and reading stories about social progress do not react to stories about developmentally disabled people with a “Yep, this feels real familiar.” Nor do they encourage each other to.

In my experience, most young adult feminists and social justice activists limit their discussions about developmental disability to stories about volunteering in a special ed class and debates about the word “retarded.” The issue of whether or not to screen for Down Syndrome in utero is an increasingly common discussion among pregnant women and their partners, but the opinions of people with Down Syndrome rarely take center stage in that debate.

Disinterest is not the only factor to blame. Accessibility, the issue most likely to leave disabled people marginalized in mainstream society, is what also leaves them isolated from the places where most social justice activists convene. People with developmental disabilities are the minority least likely to live on college campuses, and they are more likely to be socially integrated in small towns than in metropolitan areas. Few feminist and progressive publications offer versions of their articles in Simple Language

But while such barriers help us understand the marginalization of developmentally disabled people, there is little reason why we should accept them. Human rights means everybody. Feminism rightly declares the personal is the political, but this serves as a wall instead of a bridge when the personal experiences shared by the most people dominate the discussion at the expense of others. Empathy is rightly considered the best facilitator of communication in the fight for minority rights, but minorities will suffer when empathy is expected to come instantly, without the effort of learning about experiences other than our own.

There’s no reason why the #MeToo movement can’t talk about the issues exemplified by the Ansari story and the abuse epidemic endured by developmentally disabled people. There is, in fact, plenty of cross-over. During a week when the second Women’s March has pledged to be as inclusive as ever, it would be great to start a discussion asking the women who clicked on the Ansari story why they didn’t react to headlines about the epidemic. In the multiple arguments that #MeToo should teach women to show more agency and take self-defense classes, it would be great to recognize that disabled women are one group for whom self-defense classes are rarely helpful. In the same way social justice activists are helping the long marginalized experiences of LGBTQIA+ people to broaden society’s ideas about sex and gender, they could help the experiences of disabled people to broaden our ideas about what it means to be independent, strong, accomplished and attractive.

Justice will be done when reports like NPR’s about the abuse of developmentally disabled people shock the world and in doing so make it to the The New York Times’ Most Read list. And when the online March for those with disabilities who could not join an outdoor protest actually gets mentioned in the national reports about this weekend’s Women’s March. Until that day, mainstream feminism reveals its empathy to still have its limits.

 

 

Loyalty Makes A Family

31 Dec

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

 

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

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

 

 

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.
 
 

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.

 

 

 

 

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.