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Playing Disabled

30 Sep

Miracle Worker

(Image by cchauvet used under CC license via)

 

Snow White and the Huntsman is out on DVD in Europe tomorrow. Unlike in most other Snow White films, the seven dwarfs are portrayed by average-sized actors, their bodies altered by digital manipulation. No one in the dwarf community is pleased about this.  Little People of America issued a statement criticizing the filmmakers’ failure to give priority to performers with dwarfism, while Warwick Davis argued, “It is not acceptable to ‘black up’ as a white actor, so why should it be acceptable to ‘shrink’ an actor to play a dwarf?” 

I don’t believe digitally generated dwarfism is on par with blackface and all that evokes, but it’s not too far off because there is a long tradition in cinema and theater of socially privileged actors portraying socially marginalized characters. And never the other way around. Blackface is a particularly hideous blemish on the history of entertainment because it was almost always used for mockery. Yellowface has a similarly horrid history: Until 1948, anti-miscegenation laws in the U.S. banned actors of different ethnicities from kissing onscreen, so whenever a white actor portrayed an Asian leading man, Anna May Wong knew the role of the heroine was off limits to her, despite her being the most successful Chinese-American actress of the era. Meanwhile, as noted before, the circus freak show tradition that caricatures people with disabilities is still going strong today. 

To be fair, Snow White and the Huntsman does not create the illusion of dwarfism in order to mock it. This is why, to me, the blackface comparison seems overblown.  (A more apt analogy to blackface would be an actor inhaling helium to play a dwarf, as David Hyde Pierce did for laughs on an episode of Frasier years ago.) When a character matter-of-factly has a disability and the performer simulates their body type with artifice, is this not comparable to any sort of makeup or costumes? Danny Woodburn (whom you might know from Seinfeld) discussed it in an excellent interview on The Patt Morrison Show in June:

Directors, producers have every right to cast who they want to cast.  I just think this is something that merits discussion when the disability community—not just the little people community but the disability community—is so underrepresented in the film and television industry…

Others without disability portraying people with disability.  When producers, directors don’t actively seek performers with disability—[and they’d have to] because a lot of those performers don’t have equal access to casting, don’t have equal access to representation—when they don’t actively seek out those performers, then there’s a real slight against our society, I believe…

This is about making a stand so that there’s at least some due diligence… When you have a community of disabled that is about twenty percent of the population and less than one percent of disabled actors appear on TV. And some of the disabled characters, many of them are not portrayed by disabled actors.

Woodburn and Little People of America raised this issue ten years ago when Peter Jackson announced that he would cast only average-sized actors in The Lord of the Rings. As noted before, part of me was glad to see those magical creatures distanced from real-life people with skeletal dysplasias, but if Jackson had chosen to use dwarf performers to portray the Hobbits or the Dwarves, might someone like Woodburn be as famous as Elijah Wood is today? It’s hard to say. Famous actors create box office draw. Almost no famous actors are disabled and almost no disabled actors are famous. And that’s the problem.

If digital manipulation and theater makeup are someday used to expand roles to minority performers, allowing actors of any body type or ability to play the Huntsman or Prince Charming, it will then lose its exclusionary feel. I adored Snow White and the Seven Dwarfs growing up and, even though I was the only kid with dwarfism, I always portrayed the princess in the living room productions put on for my parents and their friends. But cinema has almost never swung that way. There is no history of ethnic minorities portraying famous white characters or disabled performers portraying physiotypical heroes and heroines. Plenty of ambulatory men have sat in wheelchairs to portray FDR, but no disabled man has been cast as JFK. And that stings a bit.

And what stings even more is the way in which privileged actors so often earn automatic praise for portraying minority characters in epic films, as if all minorities are opaque, mystical people only geniuses could begin to understand. John Malkovich as a mentally disabled man in Of Men and Men, Colin Firth as stammering King George VI, and Patty Duke, Melissa Gilbert and more recently Abigail Breslin as Helen Keller have all been lauded for their performances. They are all fine actors who have proven a wide range of talent, and the stories they tell are truly moving. But the public’s nearly kneejerk assumption that a minority role is a feat of greatness for a privileged actor can feel very condescending. 

In the very bizarre, direct-to-DVD film Tiptoes, Gary Oldman was digitally manipulated to take the role of the leading man with dwarfism. Peter Dinklage, who played the comedic supporting role (and, in my opinion, the only good moments in the film), said: “There was some flak. ‘Why would you put Gary Oldman on his knees? That’s almost like blackface.’ And I have my own opinions about political correctness, but I was just like, ‘It’s Gary Oldman. He can do whatever he wants.’ ” 

Fair enough, but when he was sappily introduced in the trailer as playing “the role of a lifetime,” I almost lost my lunch.


 

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Will Banning Scars on Bad Guys Bring Out the Scars on Princesses?

11 Aug

 

Of all the recent reviews of The Lion King, old and new, film critic Doug Walker’s sums it up best: “I blame bad parenting for [Scar killing his brother the king]. Because when you name one kid ‘Mufasa’meaning ‘king’and you name the other kid ‘Scar’meaning ‘scar’aren’t you just begging for something like this to happen?”

It’s been nine months since the British Film Institute made a pledge regarding films like The Lion King: No more funding for films featuring villains with facial deformities. Ben Roberts, the BFI’s deputy CEO, told The Telegraph, “Film is a catalyst for change and that is why we are committing to not having negative representations depicted through scars or facial difference in the films we fund.” The decision was in support of the #IAmNotYourVillain campaign by the British advocacy group Changing Faces, which is “for everyone with a scar, mark or condition on their face or body that makes them look different.”

Filmmakers and artists could argue that banning any portrayal (no matter how stereotypical) constitutes censorship. Which is why a more productiveand, arguably, radicalmove was the BFI’s simultaneous pledge to promote stories that portray disfigured heroes and heroines. This included funding for this summer’s critically acclaimed Dirty God (see above), about a woman facing prejudice both public and private after an acid attack. Perhaps the most groundbreaking aspect of the film is the main character’s portrayal by newcomer Vicky Knight, who has had burn marks on a third of her body since she was 8-years-old. This is an utterly extraordinary break in the long, long history of conventionally attractive, non-disabled actors slapping on makeup and prosthesis to portray deformed and disabled characters. And win awards for it.

And can I just SQUEE! for a moment over the fact that the Dirty God is also brave enough to make viewers watch and learn to empathize with a disfigured woman? Stories about learning to find true beauty within have existed before. But rarely has this been applied to a non-disfigured man meeting a disfigured woman. To quote a spot-on meme of Beauty and the Beast: “Appearances don’t matter. What counts is what’s in your heart. Unless you’re the girl.” As I’ve written before, tremendous progress will have been made when we as filmgoers can name numerous scenes wherein a heroine unveils a severe facial deformity and her strapping lover says, “I think it’s intriguing. And I wanna knock boots with you. So. Bad.” 

Is that too much to ask of the industry? The public? To quote Wonder, the best American film about a facial deformity of the past several years: “He can’t change how he looks, so we have to change how we see.”

 

 

The Hart Family Murder & The Dangerous Assumption that Adoption Is About “Rescuing”

29 Apr

Kids Playing(Image by Duane Story used under CC 2.0 via)

 

Last month Jennifer Hart drove her wife Sarah and six adoptive children in their SUV at 90 miles per hour over a cliff into the Pacific Ocean. When the story first broke, the public saw a wide array of photos posted by Jennifer on social media portraying a happy, hippie family at music festivals, farmer’s markets, and human rights demonstrations. Over the past four weeks, details have emerged suggesting the parents who proclaimed “Love is always beautiful” were as narcissistic as they were idealistic.

The Hart mothers were white and all of their children black, adopted from the foster care system. In 2010, one daughter showed bruises to her teachers and claimed Jennifer had spanked her over the edge of a bathtub and held her head under cold water. Sarah took the blame and was convicted of assault. A week later the parents switched to homeschooling all the children. They soon moved to Oregon where they were again investigated for physical abuse and food deprivation in 2013. While the social workers’ report concluded that abuse could not be proven, it noted that the children were at risk and found only one of the six children to be the correct size and height for his age. The Harts then moved to Washington State. Last month Child Protective Services attempted to contact the family three times after neighbors reported one son had finally asked them to after weeks of begging for food. Four days later, the family SUV was found at the bottom of the cliff. Two of the children’s bodies are missing, but all family members are presumed dead and investigators are classifying the crash as intentional.

The first thing that stuck out to me was just how many photos there were in which the black children of the white parents were paraded around like heaven on earth. “It’s important for abusers to manage their identity,” says professor of criminology Hannah Scott. “It was very important that they look good outside their family.” The second thing I noticed was the cult-like praise friends of the parents fired off to the media in the wake of the investigation: “These children came from scary, scary home situations [before their adoption]… I think Jen and Sarah should be idolized.” Mary Elizabeth Williams wisely inquired at Salon, did the children have any friends who could say the same thing about the Harts? Indeed, like so many children of abuse, witnesses now attest that the Hart kids were discouraged from having any relationships outside the family.

In her piece, Williams cites an article from the Coalition for Responsible Home Education warning that children who are adopted, disabled, and/or homeschooled are commonly found among abusive parents. Most homeschooled (or adopted or disabled) children in the United States are not abused, but a 2014 study of tortured children found three-quarters had been either homeschooled or never enrolled in any form of education. Laws regulating homeschooling vary widely from state to state. After the Harts fled Minnesota, they moved to Oregon and then Washington, where parents are required to register homeschooled children with their local school district, but the onus is on them to make contact. Homeschooled children in the U.S. are exempt from the regular health checkups schools provide that would detect starvation and other forms of abuse. Williams blames the holes in this system on America’s highly individualistic culture: “That same American culture of ‘Don’t you dare tread on my freeeeeeedom’ that gave us our gun obsession also feeds the lack of accountability in families that circumvent the intervention systems that schools can provide.”  

Children’s rights are more strictly protected here in Germany, where homeschooling and all forms of spanking are illegal. I don’t expect the U.S. to be able to ban homeschooling or all corporal punishment any time soon, but making it a felony to fail to register homeschooled children with local school authorities could be a step in the right direction. Hawaii has become the first state to introduce a bill requiring parents who seek to homeschool to undergo background checks. Alexandra Argyropoulos, who had notified authorities in Oregon of abuse in the Hart family, has been inspired to start a White House petition calling for a national child abuse database that would allow Child Protective Services to share information across state lines. All these steps of course face loud opposition.

Meanwhile many have pointed to the racism inherent in the Harts’ story. Rachelle Hampton writes at Slate, “The ways in which Sarah and Jennifer managed to continually evade the notice (or action) of officials is a luxury that is by and large only provided to white parents.” Biological relatives of three of the children have come forward to dispute Jennifer Hart’s claims on Facebook that they were rescued from a violent home. Whatever the facts, Hart’s narrative did exploit the widespread assumption that black American children are often better off in white middle class families like hers. Far more importantly, it also breaks the rule taught by many adoption advocates that the child’s backstory belongs to the child and is not for the adoptive parents to advertise to strangers like juicy gossip. Indeed, while the Hart family tragedy epitomizes many problems of race relations in the West, it also epitomizes many of the widespread prejudices adoptive children face.

The National Adoption Attitudes Survey in 2002 revealed the pervasive assumption that adoptive children must have adjustment problems while their adoptive parents must be particularly “unselfish.” Abusers like the Harts thrive on these assumptions. In the documentary Somewhere Between, a teenager expresses unease at being called “lucky” by strangers who know nothing about her except that she was adopted from China by white American parents. In her excellent piece “The Uses of Orphans,” adoptee Alison Kinney analyzes in depth “the casual, commonplace expectations of edification, gratitude, and cultural ambassadorship foisted upon orphans and adoptees.” She explains:

From the time I was 10, strangers wanted me to discuss my adoptive parents’ fertility, the cost of my adoption, the imagined poverty, sexual habits, and mortality of my birth mother, my genetic relationship to my sister, my wise advice to potential adopters, and my gratitude to parents and idle bystanders for my welcome in this country. They’ve used my “success,” for which they also claimed credit, to shame the supposed failures of the less fortunate…

…I’m far from the only former orphan whose life has been shaped by the expectation that I would serve as translator, apologist, cheerleader, and double-agent. One adoptive father called me an ungrateful bitch, because I supported birth mothers’ rights.

Some adoptive children have been abandoned by or removed from horrifically abusive birth families. Others have been lovingly placed in the care of adoption services by birth parents who have bravely admitted that they are not in a position to provide what every child deserves. To assume, however, that all adoptive children fall into the former category and would therefore automatically be better off with pretty much anyone so much as considering adoption is the old model. Prospective adoptive parents are routinely warned against it by many adoption experts who have seen what damage it can do. We should all be warned against it.

While we should all be grateful to our parents—provided they did not abuse us—no child on earth should be expected to be more grateful for receiving basic care and kindness. In her post “10 Questions to Ask Yourself to See If You Have A Savior Complex” at Adoption.com, activist Sarah M. Baker writes about the wrong and right ways to do it:

I have read about religious organizations encouraging people to adopt because it is their “duty” to help orphans. They place the people who do adopt these orphans on pedestals and boast about their good deeds. But, most adoptive parents I know chose adoption to fulfill their need to grow their family, to parent a child, to fill a void in their homes and hearts. While it is true that the children they adopt are in need of a forever family, these parents don’t overlook their child’s losses or take compliments from strangers lightly. They often remark back that they were the ones who were “saved” by adoption.

Baker highlights the ubiquity of the problem among religious communities, but it also exists among self-proclaimed progressives like the Harts. Many adoption agencies are acutely aware of the risk of attracting the narcissistic personalities most likely to think of themselves as heroes at the expense of the child’s well-being. One family told me their agency wants prospective adoptive parents to be brutally honest about which sorts of adoption scenarios might challenge them. They are particularly suspicious of anyone who says, “We can handle anything!” because saying yes and then finding out you can’t handle it is deeply unfair to the child. The Harts proved this point tragically well.

 

 

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.

 

 

“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.

 

 

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.

 

 

Mother Petitions to End Germany’s Nationwide Youth Games

5 Jul

BXP135660(Image by Tableatny used under CC license via)
The Nationwide Youth Games (Bundesjugendspiele) are a 95-year-old annual tradition here in Germany wherein students ages 6 to 16 spend a day competing against each other in track and field, swimming, and gymnastics. The total scores are read off in a ceremony before the entire school, and those who accumulate a certain number of points are awarded either a “certificate of victory” or a “certificate of honor.” Since 1991, “certificates of participation” have been handed out to the rest of the students.

After her son came home sobbing at having received a mere certificate of participation two weeks ago, journalist Christine Finke started an online petition to put an end to the Games. She explains on her blog:

I’m doing this for all the children who feel sick to their stomach the night before the Nationwide Youth Games, for those who wish they could disappear into the ground during the Games, and for those who want to burst into tears during the awards ceremony… Sports should be fun and make you feel good about your body. But the Nationwide Youth Games are founded on grading: on the upgrading and degrading of some at the expense of others.

She dismisses the Games as a relic of the Nazi era, and while the original Reich Games preceded Hitler, founder Carl Diem did go on to be active member of the regime who instrumentalized the Games as propaganda for the Nazi obsession with bodily perfection. Finke points to the Nazi-like language of her critics on Twitter: “Our children shouldn’t be allowed to turn into sissies.”  Indeed, mottos such as Only the strong survive commonly found in sports culture in the U.S. and other countries are not taken lightly here in Germany, where sick and disabled citizens were murdered in mass numbers less than a century ago. 

As a semi-disabled kid, I had plenty of physical limitations, but, like most kids, I enjoyed the sports that I could play fairly well (baseball, tennis, jump rope) and I quickly got bored with those that put me at the bottom of the class (basketball, football, soccer).  Due to the vulnerability of the narrow achondroplastic spinal column, I wasn’t ever allowed to participate in gymnastics, and contact sports were forbidden after the age of 10 when my peers began to tower over me.  I countered the feelings of exclusion with feelings of pride for holding the pool record for staying underwater (1 minute 15 seconds), and for surpassing everyone in the joint flexibility tests. But what about the kids whose bodies ensure that they will never surpass anyone else in any competition? The best advice I ever got came from my primary school physical education teacher: “If you had fun, you won.” 

But then came adolescence, and with the onset of puberty, the body suddenly is no longer merely something that gets you from place to place. It becomes an object you are expected to sell to others in the brutal competition of dating and mating. It’s no wonder that an almost debilitating self-consciousness encompasses so many, whether in the form of sitting out of sports, refusing to ever dance or, in extreme cases, developing disordered eating habits.

I asked adult German friends how they felt about the Games. “It is the most humiliating memory I have from school!” one responded.

“It’s more likely to teach people to stay far, far away from sports for the rest of their lives, rather than inspire them to be more physically active,” argued one mother.

“Ach, it wasn’t humiliating,” insisted one man. “It was boring. It was all about skipping out to go smoke cigarettes while the super-athletes had their fun.”

“Exactly!” chimed another. “No one cared about it except the ones who won everything.”

I spent my high school years as the scorekeeper for the girls’ volleyball team at the urging of one of the two coaches, whom I both admired greatly. Throughout three years of volleyball games, I witnessed edifying examples of cooperation and self-confidence, and I witnessed a lot of childishness and borderline cruelty from overemotional adults as well as teens.

From that time on, I’ve generally viewed competitive sports the same way most people view rodeos or yodeling clubs – i.e., good for you if you derive joy from that sort of thing, but the competitions and the medals say nothing to me about whether or not you’re a lovely person. 

Of course athletic achievement can signify important life skills like self-discipline and team work, as a recent Michigan State University study has found. But sports are not necessary for developing those skills. Self-discipline can also be demonstrated by reading two books a week or vowing to learn a foreign language and actually doing it.  Tolerance, self-confidence and decisiveness has been shown to increase among students who study abroad.  Team work can be learned from playing in a band.  Or, as LeVar Burton taught us on Reading Rainbow, an aerobics-inspired dance troupe. 

In arguing to keep the Games, physical education teacher Günter Stibbe says, “Sports are brutal, of course.  But students have to learn how to deal with humiliation.”

Indeed, narcissism is characterized not just by excessive bragging but also by reacting badly to criticism or failure.  Performing poorly in sports—or in any field—can be an opportunity to learn to accept all the moments in life when you won’t be seen as special. But the idea that the body is only worth what it can do is deleterious. And too many educators fail to teach students the dangers of being too competitive and fearing weakness

The heavier burden may in fact fall on those who come out on top in high school and risk later panicking when they learn that the big wide world doesn’t really care about how many points they accrued in the discus throw back when they were 16.  Both the losers and the winners would benefit from learning that athletic competitions in youth are no more important than rodeos or yodeling competitions at any time in your life.  After all, points and medals are no indication of whether or not you’ll know how to pursue healthy relationships, be a responsible member of your family and community, or find a fulfilling career. Those who heavily brag on into adulthood about how hard they just worked out down at the gym—or how many books they read, or how much they earn—usually appear to be compensating.

This is perhaps why Stibbe criticizes the tradition of reading of the scores in front of the whole school as “pedagogically irresponsible.”

But in Der Spiegel’s online survey, there is no option for arguing for the Games on the grounds of sportsmanship and accepting one’s limitations. The two arguments to click on to support the tradition are “For God’s sake! It was the only thing I was ever good at in school!” and “What else would we do with our crumbling race tracks?” The majority of the 57,000+ respondents chose the latter.

 

 

And the Name of the Drug That Might End Dwarfism Is Vosoritide

28 Jun

Medicine 3(Image by Marosh used under CC license via)

 

Pharmaceuticals company BioMarin announced last week the first results of their clinical trials for the drug BMN-111, now named vosoritide by the World Health Organization. Researchers have been developing vosoritide in hopes of one day curing achondroplasia, the most common type of dwarfism. Vice-President Dr. Wolfgang Dummer reported:

In children receiving the highest dose of 15 micrograms per kilogram daily, we observed a 50% increase in mean annualized growth velocity compared to their own natural history control growth velocity. This increase in growth velocity, if maintained, could allow children with achondroplasia to resume a normalized growth rate. More importantly, vosoritide was well tolerated in all dose cohorts and we have observed no major safety concerns to date.

Whether or not vosoritide could reduce an achondroplastic person’s increased risk for chronic joint pain, bowed legs, spinal stenosis, sleep apnea, or hydrocephalus remains to be seen.

Since many of my readers are new to the blog, I’m re-posting my article “Will We Live to See the End of Dwarfism?” about how some of us with achondroplasia feel about all of this.

* * *

Medicine has been transforming the fate of human society since the first moment someone bandaged a wound. Bearing this in mind, along with the more recent advances in genetics, I have realized for the past decade or so that there is a future, however near or distant, that promises a world without dwarfism. But what if this world arrives as soon as the next generation?

Pharmaceuticals company BioMarin reported earlier this year the start of clinical trials for a drug called BMN-111. If it ends up doing what it promises, repeated injections could transform the bone and cartilage growth of children born with achondroplasia, essentially curing them of the condition. Could this mean that I might someday belong to the last of the dwarfs?

To be clear, BMN-111 could cure only achondroplasia, the most common type of dwarfism, not the other 200+ types. (So the attention-grabbing name of this article is a tad misleading.) Dwarfism caused by growth hormone deficiency—which affected circus performer General Tom Thumb and most of the actors playing the Munchkins in The Wizard of Oz—has already been cured by hormone injections invented at the end of the last century. But 70% of all dwarfs have achondroplasia. Without us, the small number of people identifiable as dwarfs would become much smaller.

Because I’m a fully grown adult, I can’t ever cure my achondroplasia. But would I have chosen to do so if I could? Were my doctor to offer me a pill that would transform my joints and my muscle tone, allowing me to walk and stand around for longer than an hour without my feet swelling with pain, I would take it in an instant. The same goes for a pill that would endow me with more normal fine motor strength, so that I could open jars and push down sticky buttons and do all those tasks that leave me swearing and/or asking someone else for help. I would gladly have taken a pill that would broaden my Eustachian tubes so that I would stop getting ear infections every year. And I would have embraced any sort of medicine that would have widened my spinal column so that I would never have had to have a laminectomy, and so that I could cook and clean my house without back pain. All of the discomfort and inconvenience I just listed are part and parcel of achondroplasia – parts that limb-lengthening could never alter.  

But when I consider a pill that, in ridding me of all that pain, would also rid me of every physical marker of achondroplasia, I suddenly hesitate. My wrists, my feet, my skull, my face would look significantly different from the one I have. The idea of never having had to learn how best to react to being the most physically remarkable person in school, of never having undergone limb-lengthening, of never having lived in an institution with children with all sorts of serious conditions, of never having had to explain my unique history to others – it makes me have a hard time imagining an Emily Sullivan Sanford that is anything like the one I know today. My dwarfism is only part of who I am, but it has been a significant part of who I am. This is why I understand the Little People of America members who balk at BMN-111, put their fingers in their ears and chant, “Go away, go away, go away!”

We must approach the future rationally because our emotional attachment to life as we know it can lead us to delude ourselves with an unrealistic sense of control. History after all demonstrates that future generations will never know all kinds of things we treasure today. Give or take a few centuries, people in our part of the world will most certainly not face the same illnesses, speak the same language, wear the same clothes, eat the same foods, or observe the same traditions we do. Whether we’re debating the politics of Hawaiian Pidgin or that punk’s not dead, we do not get the final say on what future generations will know and what will be lost to the ages.

Identity is a construct, but a construct that is as powerful as any other. As Andrew Solomon writes, “I don’t wish for anyone in particular to be gay, but the idea of no one’s being gay makes me miss myself already.”

Granted achondroplasia is not merely a difference like a dialect or homosexuality. It is a medical condition that causes very real physical pain and health risks. Like diabetes. I can write with certainty that the vast majority of people with diabetes, while rightfully proud of the obstacles they’ve overcome, would happily rid themselves of the disease. They would celebrate never having to check their blood sugar, inject themselves with insulin, or worry about developing dangerous complications. We can safely make the same assumption for people who have to deal with migraine headaches or deep-vein thrombosis.

But let’s consider a condition that, like achondroplasia, has as many social ramifications as medical ones. I bet most people who wear glasses would gladly take a pill that guaranteed perfect vision. No more headaches, no more pressure sores on the bridge of your nose, no more wondering where you set them down, no more worrying if they break, no more bills! But would they so easily let go of their bespectacled appearance? Although he no longer needs glasses since his laser surgery, comedian Drew Carey wears non-prescription glasses to maintain his look.

I surveyed a handful of friends in Europe and the U.S., and most answered that they would indeed take a pill guaranteed to improve their vision, and also that they would never wear anything but sunglasses again. If this scenario ever becomes reality, the movement of the past 100 years to broaden beauty standards to include the bespectacled will begin to fade. The 20% of my respondents that answered, “I would wear non-prescription glasses because it’s a part of my identity,” will belong to a shrinking minority left to fend for itself. They will likely start counting the minutes until they hear something marginalizing like: “Isn’t it great you won’t have to look like a nerd anymore?”    

Once again, people with achondroplasia must admit that our distinguishing condition involves far more innate physical complications than simply needing glasses or being gay. Activist Harry Wieder bemoaned the reticence among people with dwarfism to even admit that we are disabled, and he was right to be so critical. Downplaying the pain and surgical risks everyone with achondroplasia faces is a matter of denial. But such denial is often rooted in the worry that others will overemphasize our pain, distancing themselves from us in a way all too similar to the fear and pity that fuels ableism. Such distance imposed by other minorities can break solidarity and lead to hierarchical thinking along the lines of, “At least I’m not like that!

Anyone who reacts to the idea of BMN-111 ridding humanity of the achondroplastic appearance with a sigh of relief has a problem. It’s a problem we can never afford to ignore. The lessons of diversity awareness and inclusion are priceless. If dermatologists some day offer a cure for vitiligo, Winnie Harlow’s recent successes in the world of modeling will still have only been a good thing.

My attachment to my starfish hands, my achondroplastic nose, and my scars is not rational. But the human experience is never purely rational. And self-acceptance is an achievement like no other. Almost every person with achondroplasia has a jarring moment when they see themselves in photos or on film and are reminded that their hands are not at all slender, like most of the hands they see in photos or on film. Or that their hips sway when they walk. Or that their skulls are larger. Learning to live with the shock is a difficult but worthwhile experience. When a mother of a girl with achondroplasia wrote to me, asking about her four-year-old daughter’s future, my family awwwwwed at the photos she sent us. “I remember having an adorable little girl with a forehead like that!” my dad grinned.

I was not nearly so moved by the recently published images of celebrities photoshopped to “reimagine them with dwarfism” next to an image of Peter Dinklage photoshopped to “reimagine him without” because only their legs were modified.

The project itself is thought-provoking, but Daniel Radcliffe simply wouldn’t get into the achondroplasia club with those ridiculously long arms. And Peter Dinklage—whom GQ declared a “stud” in its 2011 Men of the Year list—would have a dramatically different forehead, cheekbones, jaw, and nose.

One of the respondents to my survey who said he would keep his glasses explained, “Not really for aesthetic reasons, exactly, though that’s part of it (and it is fun to buy glasses). But because they’re a part of my face! I’ve never considered contacts, either, come to think of it. They serve some other function, beyond utility and style, I guess.”

Similar feelings have been expressed by people who underwent surgery to remove the sixth finger on their right hand for convenience, while opting against the removal of the sixth finger on their left: “Why would I cut it off? It’s a part of me.”

Syndactyly runs in two sides of my family. One relative remarked about her child, “I was so happy when she was born to see she didn’t have those fused toes!”

To which another relative with fused toes later said, “Why? It hurts a bit more when you stub them, but otherwise, what’s the big deal?”

Replace the word “fused toes” with red hair or monolids or pale skin or dark skin or freckles or whatever intrinsic part of you might somewhere be considered unfashionable and you’ll know a little how dwarfs feel about BMN-111. As with limb-lengthening, BMN-111 threatens to out the uglier feelings some people have about our appearance. We must remember that it’s the feelings that are ugly, not the body.    

Talking out my endlessly complex thoughts about a world without dwarfism feels like moving through a labyrinth that is partly my own making. During one such recent talk, a close friend said to me, “If we could look at a version of you that never had achondroplasia, I understand that you would miss yourself and I would miss you, too.  But you would be awesome in a different way that would still be your own way, and it would be without all the pain and complications and danger.”

This is what people with achondroplasia need to hear from those who truly accept them.

 

 

Will We Live To See The End of Dwarfism?

29 Mar

Hands

 

Prologue: My three-month long hiatus from blogging was due to tendon surgery I underwent in January and rare complications that arose from it. I am now gradually returning to work from sick leave and thrilled to be back.

* * *

Medicine has been transforming the fate of human society since the first moment someone bandaged a wound. Bearing this in mind, along with the more recent advances in genetics, I have realized for the past decade or so that there is a future, however near or distant, that promises a world without dwarfism. But what if this world arrives as soon as the next generation?

Pharmaceuticals company BioMarin reported earlier this year the start of clinical trials for a drug called BMN-111. If it ends up doing what it promises, repeated injections could transform the bone and cartilage growth of children born with achondroplasia, essentially curing them of the condition. Could this mean that I might someday belong to the last of the dwarfs?

To be clear, BMN-111 could cure only achondroplasia, the most common type of dwarfism, not the other 200+ types. (So the attention-grabbing name of this article is a tad misleading.) Dwarfism caused by growth hormone deficiency—which affected circus performer General Tom Thumb and most of the actors playing the Munchkins in The Wizard of Oz—has already been cured by hormone injections invented at the end of the last century. But 70% of all dwarfs have achondroplasia. Without us, the small number of people identifiable as dwarfs would become much smaller.

Because I’m a fully grown adult, I can’t ever cure my achondroplasia. But would I have chosen to do so if I could? Were my doctor to offer me a pill that would transform my joints and my muscle tone, allowing me to walk and stand around for longer than an hour without my feet swelling with pain, I would take it in an instant. The same goes for a pill that would endow me with more normal fine motor strength, so that I could open jars and push down sticky buttons and do all those tasks that leave me swearing and/or asking someone else for help. I would gladly have taken a pill that would broaden my Eustachian tubes so that I would stop getting ear infections every year. And I would have embraced any sort of medicine that would have widened my spinal column so that I would never have had to have a laminectomy, and so that I could cook and clean my house without back pain. All of the discomfort and inconvenience I just listed are part and parcel of achondroplasia – parts that limb-lengthening could never alter.  

But when I consider a pill that, in ridding me of all that pain, would also rid me of every physical marker of achondroplasia, I suddenly hesitate. My wrists, my feet, my skull, my face would look significantly different from the one I have. The idea of never having had to learn how best to react to being the most physically remarkable person in school, of never having undergone limb-lengthening, of never having lived in an institution with children with all sorts of serious conditions, of never having had to explain my unique history to others – it makes me have a hard time imagining an Emily Sullivan Sanford that is anything like the one I know today. My dwarfism is only part of who I am, but it has been a significant part of who I am. This is why I understand the Little People of America members who balk at BMN-111, put their fingers in their ears and chant, “Go away, go away, go away!”

We must approach the future rationally because our emotional attachment to life as we know it can lead us to delude ourselves with an unrealistic sense of control. History after all demonstrates that future generations will never know all kinds of things we treasure today. Give or take a few centuries, people in our part of the world will most certainly not face the same illnesses, speak the same language, wear the same clothes, eat the same foods, or observe the same traditions we do. Whether we’re debating the politics of Hawaiian Pidgin or that punk’s not dead, we do not get the final say on what future generations will know and what will be lost to the ages.

Identity is a construct, but a construct that is as powerful as any other. As Andrew Solomon writes, “I don’t wish for anyone in particular to be gay, but the idea of no one’s being gay makes me miss myself already.”

Granted achondroplasia is not merely a difference like a dialect or homosexuality. It is a medical condition that causes very real physical pain and health risks. Like diabetes. I can write with certainty that the vast majority of people with diabetes, while rightfully proud of the obstacles they’ve overcome, would happily rid themselves of the disease. They would celebrate never having to check their blood sugar, inject themselves with insulin, or worry about developing dangerous complications. We can safely make the same assumption for people who have to deal with migraine headaches or deep-vein thrombosis.

But let’s consider a condition that, like achondroplasia, has as many social ramifications as medical ones. I bet most people who wear glasses would gladly take a pill that guaranteed perfect vision. No more headaches, no more pressure sores on the bridge of your nose, no more wondering where you set them down, no more worrying if they break, no more bills! But would they so easily let go of their bespectacled appearance? Although he no longer needs glasses since his laser surgery, comedian Drew Carey wears non-prescription glasses to maintain his look.

I surveyed a handful of friends in Europe and the U.S., and most answered that they would indeed take a pill guaranteed to improve their vision, and also that they would never wear anything but sunglasses again. If this scenario ever becomes reality, the movement of the past 100 years to broaden beauty standards to include the bespectacled will begin to fade. The 20% of my respondents that answered, “I would wear non-prescription glasses because it’s a part of my identity,” will belong to a shrinking minority left to fend for itself. They will likely start counting the minutes until they hear something marginalizing like: “Isn’t it great you won’t have to look like a nerd anymore?”    

Once again, people with achondroplasia must admit that our distinguishing condition involves far more innate physical complications than simply needing glasses or being gay. Activist Harry Wieder bemoaned the reticence among people with dwarfism to even admit that we are disabled, and he was right to be so critical. Downplaying the pain and surgical risks everyone with achondroplasia faces is a matter of denial. But such denial is often rooted in the worry that others will overemphasize our pain, distancing themselves from us in a way all too similar to the fear and pity that fuels ableism. Such distance imposed by other minorities can break solidarity and lead to hierarchical thinking along the lines of, “At least I’m not like that!

Anyone who reacts to the idea of BMN-111 ridding humanity of the achondroplastic appearance with a sigh of relief has a problem. It’s a problem we can never afford to ignore. The lessons of diversity awareness and inclusion are priceless. If dermatologists some day offer a cure for vitiligo, Winnie Harlow’s recent successes in the world of modeling will still have only been a good thing.

My attachment to my starfish hands, my achondroplastic nose, and my scars is not rational. But the human experience is never purely rational. And self-acceptance is an achievement like no other. Almost every person with achondroplasia has a jarring moment when they see themselves in photos or on film and are reminded that their hands are not at all slender, like most of the hands they see in photos or on film. Or that their hips sway when they walk. Or that their skulls are larger. Learning to live with the shock is a difficult but worthwhile experience. When a mother of a girl with achondroplasia wrote to me, asking about her four-year-old daughter’s future, my family awwwwwed at the photos she sent us. “I remember having an adorable little girl with a forehead like that!” my dad grinned.

I was not nearly so moved by the recently published images of celebrities photoshopped to “reimagine them with dwarfism” next to an image of Peter Dinklage photoshopped to “reimagine him without” because only their legs were modified.

The project itself is thought-provoking, but Daniel Radcliffe simply wouldn’t get into the achondroplasia club with those ridiculously long arms. And Peter Dinklage—whom GQ declared a “stud” in its 2011 Men of the Year list—would have a dramatically different forehead, cheekbones, jaw, and nose.

One of the respondents to my survey who said he would keep his glasses explained, “Not really for aesthetic reasons, exactly, though that’s part of it (and it is fun to buy glasses). But because they’re a part of my face! I’ve never considered contacts, either, come to think of it. They serve some other function, beyond utility and style, I guess.”

Similar feelings have been expressed by people who underwent surgery to remove the sixth finger on their right hand for convenience, while opting against the removal of the sixth finger on their left: “Why would I cut it off? It’s a part of me.”

Syndactyly runs in two sides of my family. One relative remarked about her child, “I was so happy when she was born to see she didn’t have those fused toes!”

To which another relative with fused toes later said, “Why? It hurts a bit more when you stub them, but otherwise, what’s the big deal?”

Replace the word “fused toes” with red hair or monolids or pale skin or dark skin or freckles or whatever intrinsic part of you might somewhere be considered unfashionable and you’ll know a little how dwarfs feel about BMN-111. As with limb-lengthening, BMN-111 threatens to out the uglier feelings some people have about our appearance. We must remember that it’s the feelings that are ugly, not the body.    

Talking out my endlessly complex thoughts about a world without dwarfism feels like moving through a labyrinth that is partly my own making. During one such recent talk, a close friend said to me, “If we could look at a version of you that never had achondroplasia, I understand that you would miss yourself and I would miss you, too.  But you would be awesome in a different way that would still be your own way, and it would be without all the pain and complications and danger.”

This is what people with achondroplasia need to hear from those who truly accept them.  

 

 

 

Segregation Loses In German Court

25 May

Untitled(Image by Angela Schlafmütze used under CC 2.0 via)

 

People must learn to accept their disabled neighbors, a Rhineland court ruled this week in a case that—thankfully—has attracted controversy. A woman in the town of Kaltenengers, near Koblenz, filed suit against the construction of a home for severely disabled citizens near her apartment block. According to the Rhein-Zeitung, the woman and several other residents had expressed outrage at the supposed imposition upon their community, while their court arguments sparked outrage among the public. The plaintiff claimed that, “The vocalizations and noises made by the disabled will injure our own psychological well-being.” Talk about not-in-my-backyard.

All of us have sympathy for the NIMBY mindset to some extent. I’m fine with my neighbors playing music as long as it’s the right kind of music. (ZZ Top, yes. Opera, no. I can attest that nothing pierces through paper-thin walls at 2 am like a soprano aria.) When it’s the night before the most important exam in your academic career, you want everyone within a five-mile radius of you to shut up. When it’s the night after you’ve passed that exam with flying colors, you wish those prissy neighbors interrupting the celebrations to tell you to pipe down would let go and live a little. Such moments serve as reminders that Everybody matters is easier said than done.

There will always be debates about pristine parks, where the grass is there to be looked at, versus people’s parks, where the grass has been picnicked to the brink of death. (Berlin votes today on that very issue in deciding the fate of Tempelhof Park and, for many, the definition of Berlin itself.) But NIMBY descends into a segregationist mentality the moment we reject the idea of certain types of people outright. And in this court case, pitting disabled residents against their huffy neighbors, it makes you wonder who is really the most challenged in becoming a well-adjusted member of society.

 

 

The Parents and the Childfree Are Ignoring A Very Important Group

11 Aug

Hay que reorganizar los cuidados

(Image by gaelx used under Creative Commons license via)

 

“Now I’m going to ask you something that you officially don’t have to answer, but I’m going to ask you anyway…”

I was in the middle of a job interview, and the résumé splayed out on the table betrayed my age. I knew exactly what was coming.

“Do you have kids?” the interviewer asked.

“No,” I smiled, remembering that German law protected me from having to tell him if and when I ever planned to.

“Good,” he smiled back, glancing to the side as if afraid of being overheard. “Because I hate to say it, but employees with kids will not be able to do this job.”

It was clear to me he wasn’t being sexist or anti-family – just honest. The job in question involved shifts at all hours of the day that would change from week to week. There wasn’t any room for developing a schedule of any regularity, or for excusing oneself repeatedly during flu season. And it wasn’t the only profession I’d heard of that demanded flexibility while offering none back. This year has seen study after study reveal that childless women are heavily favored in academia and the corporate world, while men in any field face miserable stigma if they dare prioritize paternal commitments over professional ones. Parents have it so hard.

But then again, so do childless employees. Yet another study out this year revealed that middle class childless women in the public service sector face stigma and sometimes even harassment in the work place for defying traditional gender expectations. In these jobs, working moms are sometimes accommodated more readily than single ladies, leading Amanda Marcotte to complain at Slate of “women missing dates, exercise classes, and social outings in order to cover for the mothers they work with.” In New York magazine, feminist Ann Friedman argued:

Many corporations now strive for a veneer of family friendliness, so it’s not likely a woman will get the stink-eye for leaving early to catch her kid’s soccer game. Which is a feminist victory. But if a childless employee cops to the fact that she’s ducking out for a yoga class? It’s seen as downright indulgent and may even show up on a performance review.

If you’ve ever waded into the debate between childfree adults and parents, online or off, you know they tend to be rather resentful of one another. I usually find myself playing devil’s advocate to both. At this time last year I wrote about the depths of the pain self-righteous parents can inflict on others. But for every supercilious mother I’ve witnessed flaunting her offspring like Olympic gold medals, I’ve also seen huffy child-freers rolling their eyes the moment a toddler enters their field of vision, having no qualms with letting everyone know that the mere existence of a child in their presence is an assault on their personal freedom. Which brings new meaning to the word “childish.”

It’s a shame because the childfree movement has many excellent points to make about society and gender bias. Summing it all up to the inherent undesirability of children is the worst possible political tactic because no one who believes in human rights can write off an entire group of people who have no choice about belonging to that group. Would we tolerate anyone saying, “I can’t stand the elderly”? Or “There is no way I am ever going to learn to like mentally disabled people”?  And anyone who trashes someone else’s reproductive decisions in order to justify their own will never, ever convince the skeptics they need on their side. They’ll just come off as intolerant and judgmental.

And while mothers hit a wall if they insist that theirs is the hardest job in the world, I don’t think we’re going to get very far arguing that employees should have just as much right to leave work early to make it to yoga class as they do to make it to their kid’s soccer game. In the choice between work versus yoga, nothing but my own happiness is riding on the decision. Because it’s me-time. In the choice between work versus my nephew’s soccer game, someone else’s happiness is also at stake. Because it’s caregiving.

This is not to say that single people have less important lives than those with children. Nor do I intend to suggest that parenting is the hardest job in the world. (As mother and feminist Jessica Valenti pointed out in Why Have Kids?, can anyone say with a straight face that being a parent is harder than being a firefighter or an oncologist?) But those who dedicate a large chunk of their time to others in need of care should always be accommodated more readily than those who don’t. Because helping others in need—whether it’s your kids, your parents, your friend’s kids, or anyone you know who is dependent due to age, disability or illness—is work in itself. It’s often a labor of love, but it’s labor nonetheless. And usually it increases your need for me-time, while leaving you with even less time for it.

As a childless woman, I have occasionally been an unpaid caregiver and frequently the one in need of care. I’ve taken time off from work to babysit my neighbors’ toddler, to bring my nephews to the pediatrician, to pick up a friend’s daughter from kindergarten, to help organize a funeral and sort through an estate. And my parents, relatives, husband and friends have taken time off from work in order to take me to physical therapy, to check-ups and procedures, to be at my bedside before and after surgery. The ideal family-friendly workplace would accommodate any employee’s need to help someone in regular need of assistance.

And maybe if we extend the value of good parenting to the value of good caregiving, we’ll be able to have more discussions about how freakin’ hard it can be. Caregiving isn’t just about having a big heart and finding joy in knowing you helped someone. It’s about sacrifice. It’s about reading a book for the fourth time no matter how much you want to throw it out the window. Or rubbing someone’s feet to distract them from the pain no matter how little sleep you’re running on. Or missing out on parties and events no matter how badly you want to go. Or suppressing your gag reflex as the one you love spits up something absolutely gross. Or mustering the strength to decide whether you should endure the anger being vented at you because everyone needs to vent, or whether you should call your loved one out on their self-pity lest their anger become an abusive habit. Caregiving is about testing your patience until it inevitably wears thin and you make a mistake or lash out, ensuring you’ll be up the next several nights wondering whether you just scarred someone for life. Caregiving is work and, regardless of whether it is paid work, it is one of the most psychologically taxing kinds of work there is.  And some are naturally better at caregiving than others, regardless of gender.

But why is taking time off for your child’s recital more generous than taking time off for a date with a friend? Isn’t a childless peer just as valuable as a family member? Of course, but let’s not fool ourselves. Sitting through an entire school recital is a lot less fun than fine dining. (Hence the rule at Springfield Elementary: “No leaving after your kid’s part is done.”) And helping a friend through a typical young adult “crisis” like a breakup will never require the same sort of patience, empathy and thick skin that you need for helping someone through serious illness, severe injury, death or divorce. Commiserating, while still noble in its intentions, is simply saying, “I’ve been there!” and swapping sob stories within the boundaries of our comfort zone. Empathizing is forcing ourselves to stretch our imaginations and open our hearts to someone whose experience frustrates us, or maybe even scares us, because it is essentially different from our own experience. Because empathizing is so much harder, it is undeniably more noble.

Young, childless, upper/middle class adults like me will probably always be seen as the most self-indulgent because our stage in life is the least likely to involve illness or dependency. But those who volunteer after work to play with underprivileged children or tutor illiterate adults or regularly call their lonely relatives demonstrate that social segregation is in part a choice.

This is not to guilt everyone into feeling that our lives are meaningless unless we start volunteering. But we should be honest, not touchy, if our lifestyles are in fact more self-centered than others’. This year, unlike years past, I find myself only occasionally dedicating my time to someone else. My husband has been the giver, exerting himself to maintain the work-life balance constantly threatened by the pressures of his job and my medical needs. And for that he deserves accommodation from his employers, and both gratitude and admiration from me.

 

 

What’s Censorship?

27 Jan

Banned Books Display At the Lacey Library(Image by the Timberland Regional Library used under CC via)

 

Eeeny, meeny, miny, moe, catch a tiger by the toe.  If he hollers let him go…  That’s the version I learned.  My British friends caught a fishy by the toe.  My mother’s generation caught a n***** by the toe.  Were they wrong to alter it for us? 

Last week I applauded The Observer’s decision to remove a childish, poorly argued opinion piece from its website on the grounds that it did not meet their standards for style, while others hollered, “Censorship!”  This week, the German media is abuzz with its own debate over publishing standards as Thienemann Verlag has announced its decision to replace racist terms—such as “die Neger-Prinzessin”—in certain classic children’s books.  To which some are saying, Finally, while others are saying, Censorship!  And some are saying, The N-word isn’t racist!

This debate is older than the civil rights movement.  Pull up reviews of The Five Chinese Brothers on GoodReads and you’ll find nostalgic fans shouting, “Book burners!” at anyone who criticizes the illustrations.  The problem with this debate is that it usually attracts extreme narrow-mindedness on both sides. 

Some progressive activists do mistake witch hunting for spreading diversity awareness.  A few years ago feminist author Chris Lynch drew angry reactions from some women’s rights groups who demanded he change the name of his young adult series The He-Man Women-Haters Club.  But the books pick apart the machismo boys learn from pop culture and their fathers.  The mentality adopted by Lynch’s critics was so blunt that they couldn’t tell an opponent from an ally.  If the equality debate ends at what words are okay and which aren’t, regardless of context, it has failed.  Miserably.

But too many activists opposed to censorship demonstrate none of the openness and subtlety that are the building blocks of free thought and artistic integrity, which they purport to defend.  After reading Fahrenheit 451, an unparalleled tribute to the majesty of books, I got snagged in the inanity of Ray Bradbury’s hysterical afterword.  He begins by citing an editor who asked if he could put more female characters in The Martian Chronicles:

A few years before that I got a certain amount of mail concerning the same Martian book complaining the blacks in the book were Uncle Toms and why didn’t I ‘do them over’?  …  How did I react to all of the above? …  By ticketing the assembly of idiots to the far reaches of hell.  The point is obvious.  There is more than one way to burn a book.  Every minority… feels it has the will, the reason, the right to douse the kerosene, light the fuse…  For it is a mad world and it will get madder if we allow the minorities, be they dwarf or giant, orangutan or dolphin, nuclear-head or water conversationalist, pro-computerologist or Neo-Luddite, simpleton or sage to interfere with aesthetics.  The real world is the playing ground for each and every group to make or unmake laws.  But the tip of the nose of my book or stories or poems is where their rights end and my territorial imperatives begin, run and rule.  If Mormons do not like my play, let them write their own.  If the Irish hate my Dublin stories, let them rent typewriters.

That he dared them to back off and write their own books was a productive challenge, but his arrogance in damning them all to hell did not suggest he ever intended to read what they wrote.  (If he truly believed all art should be borne out of one person’s imagination alone, unscathed by anyone’s suggestions for improvement along the way, then he was probably the only writer in human history who never once accepted advice.)  This is not dialogue.  This is not open debate.  This is accusing your opponents of oppression in order to silence them.  This is failing to discern between book-burning and social critique.

Censorship is a serious issue.  Berlin’s memorial to the Nazi book-burning of 1933 is a window into an empty library.  It bears a plaque that reads, “Those who are capable of burning books are capable of burning people.”  No one should ever call for legally prohibiting the publication, sale, or existence of any sort of text if speech is to remain truly free.  Libraries should offer the public all they can eat and more.  But every publisher of children’s books should also be free to reject or revise what they release based on their own educational theories.  No one on earth believes any child of any age should read absolutely anything.  Releasing less hurtful editions of a story—while maintaining the right to publish the original—is not always censorship.  Indeed, automatically assuming it is betrays the sort of narrow-mindedness typical of censors.    

The leave-greatness-untouched argument ignores how many well-known stories have been severely distorted over time.  In the unadulterated Cinderella, the ugly stepsisters chop off pieces of their own feet to force them into the glass slipper.  The prince is fooled until he notices the slipper overflowing with blood.  Snow White forces the Evil Queen to dance in a pair of hot-iron shoes at her wedding until she drops dead.  As for Sleeping Beauty, do you think the medieval prince only kissed her as she slept?  It makes old-fashioned Disney look like a flaming liberal.  These violent versions are still around, but a lack of demand has nudged them out of the spotlight.  I wish the same fate upon racist versions of old children’s books. 

Of course, context is everything, and certain words can have many meanings.  Mark Twain used the N-word in Huckleberry Finn to portray a complex, admirable character who discredits racism and slavery.  But the N-word as it is used by Otfried Preußler—and Astrid Lindgren, and so many other white storytellers of the early and mid-20th century—evokes the colonialist stereotype of the savage who is either happy-go-lucky or bloodthirsty.  (In the words of Cracked.com, “Lesson Learned: What’s the deal with Africans?  If they’re not trying to eat it or throw a spear at it, they’re worshiping it as some sort of tribal deity, am I right?”)  Of course it’s absurd to think that every kid will automatically turn racist from reading this, but it’s also naïve to think such caricatures have no influence.  If childhood stories had no bearing on readers’ perceptions of minorities, then no one would ever promote children’s books that celebrate diversity.    

While I don’t object to students seeing racism or sexism or ableism in books, I strongly object to their being subjected to it before they’ve had any other exposure to more realistic depictions of the people these ideas dehumanize.  Psychologist Hartmut Kasten argues in the left-leaning newspaper Die Zeit that children ages four and up can read and should “learn that there are people with different skin colors, learn what we used to call them, what we call them today, and that there is such a thing as prejudice.”  But is it necessary when first introducing a child to someone who looks different to immediately hand them all the historical baggage of racism, too?  Doesn’t that suggest to them that people with different skin colors are always controversial?  Prejudice can spring from seeing a minority constantly portrayed either as a stereotype or as a victim of stereotyping. 

Prof. Kasten argues that expunging orientalism and other exotic tropes from children’s literature “destroys the imagination.”  But must the exotic always be colonialist just because that’s our tradition?  It is traditional in the Netherlands for St. Nicholas to be accompanied by a mischievous African man named Black Pete.  Some say he is supposed to be St. Nicholas’s servant, others say he is his slave.  For decades, white performers have donned blackface to portray him.  In recent years, some have replaced the blackface with multi-colored face paints, renaming the character “Rainbow Pete.”  This approach has long been popular in Suriname, a former Dutch colony with predominantly black citizenry.  Many are appalled to see an old tradition changed, but the St. Nicholas/Santa Claus/Kris Kringle/Father Christmas/Father Frost myth has been constantly evolving over time, forever an amalgam of various cultural influences.  Our nostalgia does not like us to admit this, but as said before, nostalgia is rarely honest, often revisionist.  And could Prof. Kasten argue that rainbow people are less imaginative than black slaves?         

And if children’s creativity is nurtured by stories from long ago in far off lands, why not make more of an effort to offer tales originating from those lands?  Indeed, in my workshops about teaching diversity awareness in pre-school, I promote translated folk tales and fairy tales such as Sense Pass King and Children of the Dragon to be read alongside Cinderella and Snow White.

 

The best way to combat uncreative stereotypes is to flood children’s libraries with beautiful stories that go deeper.  My hero Judy Blume agrees.  She is the most challenged author of all time in the United States.  Her brilliant books question everything from racism to religion to budding sexuality.  Most of her loudest critics usually argue that children under the age of 18 should never read about masturbation or wet dreams, despite how many 10-year-olds are already wise to it.  Blume wants parents who object to her stories to engage their children in discussions about them, which is a stance I support.  Passionately.  But is any child of any age old enough for such discussions?  Was it censorial of me to be stunned when I found Zehn kleine Negerlein lying around in a Berlin pre-school in 2010?

 

 
Die Zeit insists that if we revise anything that is in any way offensive, then we must revise everything.  (Which will lead to a ban on any disagreeable characters who are female or black or gay or disabled… )  This could be true if we were talking about bringing the law into it, but we’re not.  As far as the law is concerned, anyone is free to adapt any artwork once granted permission by the copyright holder.  Otfried Preußler’s publisher began replacing the N-word from his texts after receiving approval from the author’s daughter.  As hard as it may be for artists to swallow, artwork in the public domain is free to be toyed with as anyone sees fit.  Almost every generation releases the classics with new illustrations, whether it’s The Jungle Book or a children’s Bible. 

But to be fair, the modern illustrations bear the name of the modern illustrator, while a redacted version of an author’s text bears his.  Which feels somewhat mendacious.  Posthumous revisions would best be noted in an afterword discussing the original language and why the publisher does not wish to replicate it.   Alternatively, the cover could indicate that the story is a retelling.  Like so many of my friends, I grew up on abridged versions of Victorian classics such as Peter Pan, The Wizard of Oz, and Alice in Wonderland Only a handful of us went on to read the original texts when we were older.  Just as we went on to discover the original versions of “Eeeny, Meeny, Miny, Moe,” “Turkey in the Straw,” and the stanzas in the German national anthem that no one sings anymore.  

We should never seek to erase our xenophobic heritage – on the contrary, it is something we must own up to and learn from.  But it is no more appropriate for a young child to learn about Little Black Sambo than it is for them to learn about the rape version of Sleeping Beauty.  (Or the most graphic Mother Goose rhymes.  Or old television cartoons like these.)  She will be ready to hear it at some point.  Unfortunately, pinpointing the right point, the right moment, the right age will always be a problem.  Because racism is a problem.

 

 

Dragging Entertainment Into the 21st Century

21 Oct

(Via)

 

This week, humor site Cracked.com features a great article by J.F. Sargent titled “6 Insane Stereotypes That Movies Can’t Seem to Get Over.”  Alongside the insidious ways in which racism, sexism, homophobia still manage to persevere in mainstream entertainment, Number Two on the list is “Anything (Even Death) Is Better Than Being Disabled”:

In movie universes, there’s two ways to get disabled: Either you get a sweet superpower out of it, like Daredevil, or it makes you absolutely miserable for the rest of your life. One of the most infamous examples is Million Dollar Baby, which ends with (spoilers) the protagonist becoming a quadriplegic and Clint Eastwood euthanizing her because, you know, what’s the point of living like that? Never mind the fact that millions of people do just that every day…

Showing someone using sheer willpower to overcome something is a great character arc, and Hollywood applies that to everything, from learning kung fu despite being an overweight panda to “beating” a real-world disability. The problem is, this arc has some tragic implications for the real-world people who come out with the message that they are “too weak” to overcome their disabilities.

The result is that moviegoers think that disabilities are way worse than they actually are, and filmmakers have to cater to that: For example, while filming an episode of Dollhouse where Eliza Dushku was blind, the producers brought in an actual blind woman to show the actress how to move and get around, but the result was that “she didn’t look blind,” and they had to make her act clumsier so the audience would buy it.

Even in Avatar, real paraplegics thought that Sam Worthington’s character was making way too much effort transferring from his chair, but that’s the way we’re used to seeing it in movies. It’s a vicious cycle, and it isn’t going to stop until either Hollywood wises up or people with disabilities stop living happy, fulfilling lives.

I’ve examined Hollywood’s ableist problems several times before and there are still plenty to dedicate an entire blog to.  But, like The Daily Show or The Onion, Cracked has a long history of excellent social critique embedded amongst the fart jokes and it’s awesome.  Especially when considering that not only mainstream but alternative entertainment all too often can’t seem to let go of the tired stereotypes.  That Cracked is a site not officially dedicated to politics or social activism suggests that the comics writing for it believe calling out the industry for its embarrassing ineptitude is just common sense.