Tag Archives: Sick Fascination

Curiosity Kills the Rat

19 Oct

From the Archives

 

“All the freaky people make the beauty of the world.”

— Michael Franti

Fourteen years ago, I made a trip to Hot Topic—that quintessential 90s chain store for all things goth—in search of some fishnet stockings for a friend.  It was my first visit to the store since I was back in a wheelchair for my third and final limb-lengthening procedure and the narrow aisles prevented me from venturing beyond the entrance.  My first time in a wheelchair, from ages 11 to 12, had been a completely humbling experience as I was forced to see how very inaccessible the world is for the non-ambulatory.  This time around I was battling the hot-cheeked self-consciousness that adolescence attaches to any signs of dependency. 

As I tried to look casual while flipping through black gloves, black stockings, and black dog collars, a guy approached me sporting crimson hair, eyebrow rings, an employee badge and a smile.  “This is store is easily adjustable,” he grinned, and with that he began shoving aside the display cases and clothes racks—which were, like me, on wheels—clearing a path for me right through to the back and taking little notice of the other shoppers, some of  whom took one to the shoulder.  It was one of those crushes that disappear as quickly as they develop but leave a lasting memory: my knight in shining jewelry.

Thanks to experiences like this, I have a special place in my heart for the acceptance of physical differences that can often be found in the subcultures of punks, hippies, and goths.  From the imagining of monsters to the examination of anything taboo, counter-culture is often unfazed by physical qualities that fall outside of mainstream beauty standards.  The first kid in my high school who chose not to stare at the external fixators on my arms but instead held the door for me had green and purple hair.  About a month after my trip to Hot Topic, I showed a death-metal-loving friend my right fixator (shown above) for the first time, with the six titanium pins protruding from open wounds in my thigh.  He grinned, “That is the ultimate piercing, man!”  He hardly could have come up with a more pleasing reaction.  That my wounds were cool instead of “icky” or “pitiful” was a refreshing attitude found almost exclusively outside mainstream culture.  This attitude more readily understands my belief that my scars are merit badges I earned, not deformities to erase. 

However, this tendency toward decency over discomfort is just one side of the alternative coin.  Every subculture has its strengths and its weaknesses, and for all the freaky heroes I’ve encountered, I’ve also met plenty whose celebration of difference devolves into a sick fascination with the grotesque.  “Weird for the sake of weird” is progressive when it asserts that weird is inescapable, that it is in fact as much a part of the natural order as any of our conventions, and when it serves as therapy for the marginalized.  But it is problematic when it involves self-proclaimed artists using others’ reality as their own personal toys.     

In a previous post, I referred to a friend of friend including me in an Internet discussion about limb-lengthening.  His comments were in reaction to a photo of a leg wearing an Ilizarov fixator that had been posted on a Tumblr page focused on the “wonders of the world.”  There are countless sites like it, where photos of conjoined twins, heterochromatic eyes, intersexual bodies, and medical procedures are posted alongside images of animals, vampires, robots, cosplay, self-harm, manga and bad poetry.  I get it.  The world is “crazy” and it’s all art.  But if that’s not a freak show, what is? 

Disabled people are no longer put behind glass or in the circus—at least not in the U.S., Canada or Western Europe—but many people still believe they reserve the right to stare, both in public and on the Internet.  Whether under the guise of promoting diversity or admiring triumph in the face of adversity, they suppress any realization they may have that no one likes being stared atUnless it’s on our terms.  

I see endless art in my medical experiences and it can be so therapeutic.  During my first limb-lengthening procedure I also had braces on my teeth, leading my dad to observe, “She’s now 95% metal.”  Kinda cool.  During my third procedure, I had Botox injected into my hips twice to paralyze my muscles lest they resist the lengthening.  At the time, when I along with most people had no idea what it was, it was described to me as “basically the most deadly poison known to man.”  Whoa, hardcore.  When I happened upon photos of my anterior tibialis tendon graft surgery, I was enthralled: “I’m so red inside!”  And when a fellow patient recently alerted me to the fact that a high-end jeweler designed a bracelet strongly resembling the Ilizarov frame, I laughed my head off.  Almost all of us like looking at our bodies, and perhaps this is especially so for those of us who have had real scares over our health.  It’s a matter of facing our fears and owning it.  But no one likes the idea of others owning it.  This subtle but severe preference, this desire for dignity determines the difference between human rights and property rights. 

Two years ago, NPR featured a piece by Ben Mattlin, who is non-ambulatory and who said he used to be uncomfortable with the idea of Halloween and its objectification of the grotesque.  From my very first costume as a mouse to my most recent stint as the Wicked Witch of the West, my love of Halloween has not so much as once flickered, but his point is worth discussing.  Costume play, Halloween and any celebration of “weird” that is primarily attention-seeking inherently assumes there is a “natural” basis to be disrupted.  (And all too often Halloween devolves into offensive imitations of all sorts of minority identities.) 

I have my own collection of artsy photos stolen off the Internet that I use as screensavers and montages for parties, but they do not include photos of bodies taken outside the context of consensual artistic expression.  Re-appropriating a photo in a medical journal for a site about all things bizarre is protected under freedom of speech, but it can feel like disregard for consent.  And in any case, such xenocentrism will always be just as superficial as the status quo it seeks to disrupt.

When conjoined twins Abigail and Brittany Hensel agreed to be interviewed once—and only once—for a documentary about their lives (which I highly recommend), they explained that they don’t mind answering strangers’ questions at all.  (Ben Mattlin has said the same, as do I.)  What they hate more than anything is being photographed or filmed without permission.  While attending a baseball game outside their hometown, a sports film crew quickly directed their attention to the girls.  Even though they were already being filmed by their own documentary team, the stranger camera’s invasive, presumptuous stare ruined the day for them. 

Sensitivity toward others’ experience with medicine and death should never kill the discussion.  These discussions are imperative and art is the most glorious way we relate to one another.  But just as there’s more to good manners than simply saying “Please,” there’s more to genuine learning and artistic expression than poking at anything we can get our hands on.  Nuance, deference and respect are prerequisites for anyone with artistic or scientific integrity not only because they are the building-blocks of common decency, but because history has shown that curiosity will more likely harm the rat than the cat.

 

 

Originally posted May 19, 2012

Sex with Circus Midgets or Uncomfortable Silence

7 Jul

(Via)

 

“Pregnant mothers should avoid thinking of ugly people, or those marked by any deformity or disease; avoid injury, fright and disease of any kind.”  So advised doctors in the 1920 parenting manual Searchlights on Health.  Eugenics was all the rage back then, but it had hardly come out of nowhere.  The ugly laws of the 19th and early 20th centuries prohibited, for example in Chicago, “Any person who is diseased, maimed, mutilated, or in any way deformed, so as to be an unsightly or disgusting object, or an improper person to be allowed in or on the streets, highways, thoroughfares, or public places. 

Under these laws, poor and homeless people with disabilities suffered the most.  The class system gave those from affluent families, like Helen Keller, a better shot at being exempted.  But before the disability rights movements of the 1970s, countless disabled children were abandoned by their families in orphanages and asylums, and were thus condemned to grow up to either join the circus or become the vagrants these laws targeted.  Abandonment, rejection and the resulting invisibility in society is an ableist tradition of astounding resilience.  Because just how far have we come in the past hundred years since doctors and municipalities advised not talking about or looking at disabled people?

This week Slate magazine features two articles by Barry Friedman and Dahlia Lithwick, asking readers to consider “what is left for the progressive movement after the gay rights victory at the Supreme Court.”  Arguing that liberal activists have developed tunnel vision, focusing almost exclusively on gay marriage and nothing else, they trumpet issues that deserve attention along with marriage equality.  Their list spans two articles, covering all sorts of social causes, from ending the death penalty to protecting the environment to improving child-care funding and education to marijuana legalization.  Nowhere in either article do they mention disability rights.

This very same week Slate also kicked off a blog about Florida by Craig Pittman with an opening article called, “True Facts About the Weirdest, Wildest, Most Fascinating State.”  Among the facts that apparently render the Sunshine State weird are the python-fighting alligators and “a town founded by a troupe of Russian circus midgets whose bus broke down.”  On the day of its release, Slate ran the article as its headline and emblazoned “A Town Founded By Russian Circus Midgets” across its front page as a teaser.

Face-palm. 

Friedman and Lithwick have nothing in common with Pittman except that they also write for Slate, a news site written by and for young liberals.  And that their articles remind me of what I’ve come to know and call Young Liberal Ableism. 

 That is, there are two ableist mentalities not uncommon among young liberals:

 1)      Uncomfortable Silence: the tendency to skirt issues of disability, especially compared to other social issues, because disability threatens two things young liberals unabashedly embrace – being independent and attractive.  (“Independent” and “attractive” rigidly defined, of course.)

 2)      Sex with Circus Midgets: the sick fascination with physical oddities that objectifies and/or fetishizes people with atypical bodies or conditions.  (I’ve discussed this in detail here.)

Both mentalities see any disabled people they hurt as acceptable collateral damage

Here’s the thing about dealing with all this.  You get used to it, but not forever and always.  Sometimes it rolls off your back, sometimes it hits a nerve.  This time, seeing a magazine as progressive as Slate brandish RUSSIAN CIRCUS MIDGETS on its front page while leaving disability rights out of its social justice discussion brought me right back to college, where friends of friends called me “Dwarf Emily” behind my back and someone else defended them to my face.  Where classmates cackled about the film Even Dwarfs Started Off Small—“because it’s just so awesome to see the midgets going all ape-shit!”—but declined my offer to screen the documentary Dwarfs: Not A Fairy Tale.  Where a gay professor was utterly outraged that her students didn’t seem to care about immigration rights or trans rights, but she never once mentioned disability rights.  Where an acquaintance asked to borrow my copy of The Curious Lives of Human Cadavers, but awkwardly turned down my offer to lend her Surgically Shaping Children.  Where roommates argued vociferously that they would rather be euthanized than lose the ability to walk.  Where jokes about dwarf-tossing were printed in the student paper. 

I won’t go into certain crude comments that involved me personally, but I will say that when a friend recently, carefully tried to tell me about how shocked he was to find a certain video of dwarfs in a grocery store, I cut him off and said, “Lemme guess, it was a dwarf woman porn video?  That’s one of the top search terms that bring people to my blog.”

For a little more than a decade, I’ve lived on one of America’s most liberal college campuses and then in one of the world’s most progressive cities.  I have never met so many liberal people at any other time in my life and I have never met so many ableist people at any other time in my life.   

This is not to ignore all those I’ve met who, despite their lack of experience with disability, ask carefully constructed questions and consistently make me feel not like a curious object but like a friend who is free to speak her mind about any part of her life experience.  And some young liberals are doing awesome work for disability rights and awareness.  But when a journalist and mother of a disabled twentysomething recently said, “No one wants to talk about disability rights – it’s not seen as sexy enough,” I knew exactly what she was talking about.

In 2009, when the pretty darn liberal Huffington Post reported on Little People of America’s call on the FCC to ban the word “midget,” the majority of commenters snidely remarked, “At least they can get married.”  There was truth to this, but I found it telling that not a single commenter on the left-wing blog considered that the word “midget” could be hurtful.  Everyone instead decided to play Oppression Olympics

Understand that I will never say that among liberals disabled people are worse off than other minorities or that ableism is the “last frontier” in human rights.  It’s not.  Even if I believed it to be true, it would be impossible to prove and fighting for the crown of Superlative Suffering doesn’t do anything but imply that there are those against whom you wish to compete.  I don’t want to compete with anyone. 

Nor do I assume that anyone who uses the word “midget” is bigoted.  Many who use antiquated terms are honestly unaware of their potential to hurt.  (It wasn’t until two years ago that I learned that referring to the Sami-speaking regions as “Lapland” can be very offensive to those who live there.)  And there is no minority on earth whose members agree unanimously on a name.  “Little people” makes me cringe almost as much as “midgets,” while my husband winces whenever I use the German word for “dwarf.”  Labels are only half as important as the intentions behind them.

But when young liberals insist that no one can be expected to know that “midget” is hurtful, there is something particularly perverse about hearing dehumanizing beliefs and ideas come from the mouths of those who pride themselves on their open-mindedness and diversity awareness.  Or whose own experience of marginalization would logically render them a better candidate for empathy.  In the words of Charles Negy, bigotry is an unwillingness to question our prejudices. 

Why do I call it Young Liberal Ableism and not just Young Ableism?  Because certain liberals could learn a thing or two from certain conservatives about facing disability and illness. Consider the stereotype of the small-town conservative who proselytizes about etiquette and tradition, and goes into a tizzy over the idea of two men kissing or a woman not taking her husband’s name or her neighbors speaking another language or a singer using swear words.  But for all the types of people she does not want to accept in her community, she is fiercely dedicated to her community.  She spends a good deal of her time going to church and checking in on her neighbors, and stays in contact with those who are physically dependent, sick or disabled.  As patronizing as charity can be, many young conservatives have been raised to send get-well cards, bake pies, and call on neighbors and relatives who are stuck at home or in the hospital.  They’ve been raised to believe that it’s the right thing to do. 

Many young liberals, meanwhile, have been raised to analyze their problems and personalities to the point of vanity, question moral traditions to the point of moral relativism, and feel free to do what they want to the point of only doing what they want.  They believe that anyone is welcome to live in their town, but they’ll only socialize with those they deem interesting.

I’m stereotyping of course.  But it’s a fact, not a stereotype, that in the U.S. liberals are less likely to donate to charity, less likely to do volunteer work, and less likely to donate blood than conservatives. 

Ultimately, it does not matter whether you call yourself “liberal” or “conservative,” left-wing or right-wing.  There are Ayn Rand conservatives who insist that compassion is “evil,” and there are liberals who work tirelessly in low-paying jobs at non-profits and social agencies that do as much good as any charity.  There are those of all political stripes who make large charitable donations but also want everyone to know about it, and there are those who don’t know the first thing about politics but know everything about empathy.  We are far more complex than our politics give us credit for.

The goal should be to never become too self-congratulatory about our politics or morals,  as Friedman and Lithwick warn.  But in response to their call for issues progressives specifically need to pay to attention to, I do have a wish list going:

How about young liberals fighting to make sure dwarf-tossing is banned around the world?

How about facts instead of factoids when it comes to communities founded by dwarf entertainers who have been socially isolated by ableism and fear life-long unemployment?

How about young liberals continuing to fight for the U.S. to ratify the U.N. Convention on the Rights of Persons with Disabilities?

How about young liberals debating the Supreme Court’s 9-0 ruling last year that religious organizations are exempt from the Americans with Disabilities Act?

How about young liberals talking more about the astronomical rates of violence against intellectually disabled people, rather than just sneering at Sarah Palin’s complaints about the word “retard”?

How about young liberal bloggers trying to understand physical disability and illness as often as they try to understand depression and social anxiety?

How about our seeing a lot more women with dwarfism starring in romantic comedies than in porn movies? 

How about more young liberal discussions about real dwarfs than Tolkien Dwarves?

In issuing these demands, I’m of course terrified of appearing too self-interested.  Politics is all about trying to square the selfishness of What about ME?! with the fairness of Everybody matters.  Sometimes sticking up for your own rights is easier than sticking up for someone else’s.  Sometimes it’s the other way around.  All of us, liberals and conservatives, should value trying to do what is right rather than what is easy.

 

 

Does This Feel Ableist To You?

10 Mar

(Via)

 

This London mural of Game of Thrones star Peter Dinklage has been around for a while.  Dinklage’s success and visibility has generally been great for the dwarf community.  Most of this is thanks to professional decisions made by Dinklage himself.  He suavely excoriated dwarf-tossing last year when accepting his Golden Globe.  He starred in the only good film about a character living with dwarfism in the real world.  And his famous “I don’t have dreams with dwarfs in them!” rant continues to provide me with a perfect answer to those who still snicker about midgets on Facebook.  But now that Game of Thrones has helped propel him into the mainstream, not all the attention given to his dwarfism is good.

Fantasy traditionally exiles men with dwarfism to the Friend Zone and Game of Thrones has finally taken a hammer to that.  But it doesn’t feel like progress when shallow discussions of Dinklage’s sexiness treat him like a novelty.  (And invariably trigger jokes and a sick fascination with the effect of height on certain sex positions.)  In her superb list, “Things to Keep in Mind When You Come Across a Person with Dwarfism,” the girlfriend of a dwarf writes on Tumblr:

Don’t go out of your way, if they’re male, to affirm their masculinity by attempting to ‘bro down’ by gratuitously using words like ‘boss,’ ‘man,’ ‘sport,’ ‘champ,’ etc. in your interactions with them.  It makes it obvious that you’re uncomfortable with their difference & are attempting to overcompensate.

Her complete list is definitely worth your time.  (And oh man, do I remember the high-fives… )  But I’m not going to decide just yet whether the above mural embodies the patronizing attitude she describes.  I want to hear what you think:

 

 

Feel free to explain your answer in the comments.

 

 

 

 

 

Happy Halloween

24 Oct

As of tomorrow, I have to go on medical leave and take a break from blogging for hopefully just a short while.  So, in the spirit of season, I’ll leave you with a re-run of my old post, “Curiosity Kills the Rat.”  Happy Halloween and be back soon!

CURIOSITY KILLS THE RAT

“All the freaky people make the beauty of the world.”

— Michael Franti

Fourteen years ago, I made a trip to Hot Topic—that quintessential 90s chain store for all things goth—in search of some fishnet stockings for a friend.  It was my first visit to the store since I was back in a wheelchair for my third and final limb-lengthening procedure and the narrow aisles prevented me from venturing beyond the entrance.  My first time in a wheelchair, from ages 11 to 12, had been a completely humbling experience as I was forced to see how very inaccessible the world is for the non-ambulatory.  This time around I was battling the hot-cheeked self-consciousness that adolescence attaches to any signs of dependency. 

As I tried to look casual while flipping through black gloves, black stockings, and black dog collars, a guy approached me sporting crimson hair, eyebrow rings, an employee badge and a smile.  “This is store is easily adjustable,” he grinned, and with that he began shoving aside the display cases and clothes racks—which were, like me, on wheels—clearing a path for me right through to the back and taking little notice of the other shoppers, some of  whom took one to the shoulder.  It was one of those crushes that disappear as quickly as they develop but leave a lasting memory: my knight in shining jewelry.

Thanks to experiences like this, I have a special place in my heart for the acceptance of physical differences that can often be found in the subcultures of punks, hippies, and goths.  From the imagining of monsters to the examination of anything taboo, counter-culture is often unfazed by physical qualities that fall outside of mainstream beauty standards.  The first kid in my high school who chose not to stare at the external fixators on my arms but instead held the door for me had green and purple hair.  About a month after my trip to Hot Topic, I showed a death-metal-loving friend my right fixator (shown above) for the first time, with the six titanium pins protruding from open wounds in my thigh.  He grinned, “That is the ultimate piercing, man!”  He hardly could have come up with a more pleasing reaction.  That my wounds were cool instead of “icky” or “pitiful” was a refreshing attitude found almost exclusively outside mainstream culture.  This attitude more readily understands my belief that my scars are merit badges I earned, not deformities to erase. 

However, this tendency toward decency over discomfort is just one side of the alternative coin.  Every subculture has its strengths and its weaknesses, and for all the freaky heroes I’ve encountered, I’ve also met plenty whose celebration of difference devolves into a sick fascination with the grotesque.  “Weird for the sake of weird” is progressive when it asserts that weird is inescapable, that it is in fact as much a part of the natural order as any of our conventions, and when it serves as therapy for the marginalized.  But it is problematic when it involves self-proclaimed artists using others’ reality as their own personal toys.     

In a previous post, I referred to a friend of friend including me in an Internet discussion about limb-lengthening.  His comments were in reaction to a photo of a leg wearing an Ilizarov fixator that had been posted on a Tumblr page focused on the wonders of the world.  There are countless sites like it, where photos of conjoined twins, heterochromatic eyes, intersexual bodies, and medical procedures are posted alongside images of animals, vampires, robots, cosplay, self-harm, manga and bad poetry.  I get it.  The world is “crazy” and it’s all art.  But if that’s not a freak show, what is? 

Disabled people are no longer put behind glass or in the circus—at least not in the U.S., Canada or Western Europe—but many people still believe they reserve the right to stare, both in public and on the Internet.  Whether under the guise of promoting diversity or admiring triumph in the face of adversity, they suppress any realization they may have that no one likes being stared atUnless it’s on our terms.  

I see endless art in my medical experiences and it can be so therapeutic.  During my first limb-lengthening procedure I also had braces on my teeth, leading my dad to observe, “She’s now 95% metal.”  Kinda cool.  During my third procedure, I had Botox injected into my hips twice to paralyze my muscles lest they resist the lengthening.  At the time, when I along with most people had no idea what it was, it was described to me as “basically the most deadly poison known to man.”  Whoa, hardcore.  When I happened upon photos of my anterior tibialis tendon graft surgery, I was enthralled: “I’m so red inside!”  And when a fellow patient recently alerted me to the fact that a high-end jeweler designed a bracelet strongly resembling the Ilizarov frame, I laughed my head off.  Almost all of us like looking at our bodies, and perhaps this is especially so for those of us who have had real scares over our health.  It’s a matter of facing our fears and owning it.  But no one likes the idea of others owning it.  This subtle but severe preference, this desire for dignity determines the difference between human rights and property rights. 

Two years ago, NPR featured a piece by Ben Mattlin, who is non-ambulatory and who said he used to be uncomfortable with the idea of Halloween and its objectification of the grotesque.  From my very first costume as a mouse to my most recent stint as the Wicked Witch of the West, my love of Halloween has not so much as once flickered, but his point is worth discussing.  Costume play, Halloween and any celebration of “weird” that is primarily attention-seeking inherently assumes there is a “natural” basis to be disrupted.  (And all too often Halloween devolves into offensive imitations of all sorts of minority identities.) 

I have my own collection of artsy photos stolen off the Internet that I use as screensavers and montages for parties, but they do not include photos of bodies taken outside the context of consensual artistic expression.  Re-appropriating a photo in a medical journal for a site about all things bizarre is protected under freedom of speech, but it can feel like disregard for consent.  And in any case, such xenocentrism will always be just as superficial as the status quo it seeks to disrupt.

When conjoined twins Abigail and Brittany Hensel agreed to be interviewed once—and only once—for a documentary about their lives (which I highly recommend), they explained that they don’t mind answering strangers’ questions at all.  (Ben Mattlin has said the same, as do I.)  What they hate more than anything is being photographed or filmed without permission.  While attending a baseball game outside their hometown, a sports film crew quickly directed their attention to the girls.  Even though they were already being filmed by their own documentary team, the stranger camera’s invasive, presumptuous stare ruined the day for them. 

Sensitivity toward others’ experience with medicine and death should never kill the discussion.  These discussions are imperative and art is the most glorious way we relate to one another.  But just as there’s more to good manners than simply saying “Please,” there’s more to genuine learning and artistic expression than poking at anything we can get our hands on.  Nuance, deference and respect are prerequisites for anyone with artistic or scientific integrity not only because they are the building-blocks of common decency, but because history has shown that curiosity will more likely harm the rat than the cat.

 

 

Welcome to Painting On Scars

4 Feb

 

So you’ve heard that “Kids can be so cruel”?  What a cop-out.  Adults are cruel.  Kids are constantly blunt and sometimes mean-spirited, but they have the chance to grow up.  Turning 30 this year, I realize that I’ve encountered more ableism over the past 10 years than any other time in my life – online, at dinner parties, and during my four years as an undergrad at Bard College when it was consistently rated in one of the Top Ten Most Liberal Schools by The Princeton Review.  If I ever have children biologically, they will each have a 50% chance of inheriting achondroplasia from me.  Whether or not they have achondroplasia, I’m much more concerned about the adults they will encounter in their lives than the kids.

Today ableism – a.k.a. disability discrimination – ranges from the yuk-yuk objectification of freaks, to the sick fascination with medical realities, to personal phobias of looking weak or unattractive, to well-intentioned charity that is truly patronizing That this so often comes from those whose own experiences of marginalization would logically render them better candidates for empathy has inspired me to start this blog. 

There also aren’t enough blogs about dwarfism.  There are hardly any blogs about dwarfism beyond childhood.  The community of dwarfs who have undergone limb-lengthening is non-existent, as if we want to pretend we were never dwarfs in the first place.  And feminist blogs for and about dwarfs who have undergone limb-lengthening continue to elude my Google efforts.

While my own experience invariably influences my perspective, I refuse to argue only about issues directly related to dwarfism and limb-lengthening.  Without knowing the word for it, I was raised to believe that if you’re going to support the rights of one minority, you’ve got to support them all.  In the end, they’re all related.

So consider this blog a continued reflection on the issues I addressed in this book.  Or The Most Inclusive, Progressive Forum Ever!  Or just another reminder that whether you’re discussing a sex issue or scar tissue, the personal is inescapably the political.

 

 

It’s Not One or the Other with Evelyn Evelyn

6 Nov

Evelyn EvelynSo Jason Webley and Amanda Palmer have formed a band called Evelyn Evelyn for which the two dress up as conjoined twin sisters.  I wasn’t going to comment on the scandal that has erupted over the launch of their new album because it seemed too many people were screaming at the top of their lungs and the ones who weren’t had stuck their fingers in their ears.  But I’m both a big Jason Webley fan and an advocate for more visibility on the issues of ableism in political discourse.  And this is an excellent example of a common occurrence in the counter-culture that rarely gets talked about.  Here are a few of my points, some of which have already been made by others, some of which haven’t.

One can love Jason and/or Amanda as artists and also believe that they’ve done something wrong.  One can be in awe of Mick Jagger’s talent, and still gristle at his womanizing and the lyrics he sings advocating it.  The adolescent idol-worship of these two singers that’s been revealed in the defense arguments is quite disturbing.

Even though I fiercely believe in intersectionality (i.e., if you’re gonna support the rights of one minority, you’ve got to support them all), being insensitive toward one group of people does not make you insensitive to all.  Amanda Palmer is a fierce feminist and LGBT advocate, and both she and Jason like to sing about, as he put it, the experiences of those on the margin.  This project does not nullify their previous good works and transform  them both into misanthropic bigots.

As intersectionality often proves, a liberal identity does not make progressives like Jason and Amanda incapable of prejudice or sheer jack-ass behavior.  I met student after student at Bard who would glare at anything remotely racist or sexist or homophobic, but who insisted that dwarf-tossing is fucking hilarious and cringed at individuals with facial deformities.

I admit that I didn’t consider the offensive implications the first time I heard of the project.  When I read the bio on Evelyn Evelyn’s MySpace page, I did start to feel the thing reverberate with circus-freak retro-chic.  More than anything, I didn’t see why the twins had to be conjoined.  They have the same name and sing back and forth to each other; there isn’t anything about their record requiring them to be conjoined except to add a little freak-show flavor, realized by the sight-gag of the two singers performing onstage on a single accordion.  If Evelyn Evelyn were merely identical twins, no one would have given it a moment’s pause and only the freak-show flavor would be lost.  I happen to think “Have You Seen My Sister Evelyn?” is a great ragtime song.  I also enjoyed Jason’s solo rendition of “Elephant Elephant” using the audience for call-backs far more than his version with Amanda as his twin. 

Bearing all this in mind, it is my opinion that both Jason and Amanda have handled this quite badly. 

Jason’s apology on his blog is much less defensive than Amanda’s, his shock at the reaction seems genuine, but he nevertheless manages to keep stumbling.  “I had some fear that the few conjoined twins living in the world might find the project offensive.”  Ouch.  Respect and human rights do not directly correlate to a minority’s numbers.  Someone pointed out that conjoined twins are so few because their infant mortality rate is so high.  Ouch.    

As for Amanda, I don’t know why she tweets or posts so frequently only to be shocked about the fire she draws from her hastily typed statements regarding her often controversial projects.  Let’s not kid ourselves – she obviously likes being an iconoclast, which is fine and in fact admirable, but she so far lacks the poise to handle the inevitable backlash each time she comes roaring onto the scene with another boisterous project.  And, Amanda, you don’t need to let us know you’re PMSing.  If you’d used the word “midget” on me and included that in your apology/excuse, it would not help to redeem you. 

I originally wasn’t going to attend the Berlin show because it’s rather expensive, but now I’m considering proposing a boycott over this issue.  Not because I hate these two for it (I don’t), but because the friends who were reluctant to go over the price would likely tell me to loosen up if ableist politics were my sole reason.  And that could be a good opportunity to confront the prejudices lurking under the liberal badges we love to wear.

 

UPDATE: Any credibility Amanda’s apology had was swiftly obliterated by her performance on this Australian talk show.  She may very well be a feminist and a radical and an activist, but first and foremost, Amanda Palmer is a narcissist.  Possibly the least radical thing you can be in show business.

 

 

Note: This post originally appeared on February 21, 2010 at klompen.livejournal.com