Tag Archives: Media

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.

 

 

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Should Jokes About Minorities Be Off Limits?

7 Feb

 
Ofcom, the communications regulator of the United Kingdom, has concluded that comedian Jimmy Carr was in breach of the code of conduct when he cracked the following joke on The One Show last November: “I tried to write the shortest joke possible, so I wrote a two-word joke which was ‘dwarf shortage.’ ” He then looked squarely into the camera and said, “And if you’re a dwarf and you’re offended by that, grow up.”

The scandal at face-value seems odd. Carr’s joke is fantastically boring to those of us with dwarfism. (A joke is indisputably boring if it’s easy to prove that anyone who might attract such a comment and who has graduated primary school has heard it a kajillion times before.) But not only is it far from the most distasteful thing Carr has ever said—his cracks about pedophilia come to mind—but it is far from the cruelest dwarf joke he’s ever made.

In 2009, in an episode of the BBC quiz comedy show QI, host Stephen Fry rattled off a list of 19th-century circus freaks on Coney Island. Trying to suppress a giggle, he said, “There was Bonita—I don’t know why this is funny—the Irish fat midget.”  

The audience exploded with laughter.

Carr immediately looked at Fry agape. “You don’t know why that’s funny?”

I share a love for QI with my partner so fierce that we had once joked about using the theme song for our wedding procession. I also am not skinny,  belong to a family named Sullivan, and have achondroplastic dwarfism, so it’s hard for me to imagine any sort of joke that I could take more personally without it being addressed to me specifically. What better way to be reminded that so many adults would secretly side with the playground bullies if they could than seeing the audience and creators of your favorite show crack up over your very existence?

QI was never reprimanded for it by Ofcom, however, because it is on much later in the evening in the U.K. than The One Show and does not require its guests to sign a form agreeing to comply with family-friendly standards of comportment. Ofcom reports that the BBC responded to its complaint about Carr on The One Show thusly:

The BBC said that “any humour alluding to disability has the potential to offend and, although the BBC received very few complaints on the issue, the One Show’s Editor… sincerely regrets any offence that has been caused by it”. The BBC recognised the “need for sensitivity and careful consideration in respect of the inclusion of material of this nature”. It added that “The One Show is heavily involved with the Rickshaw Challenge initiative that raises money for Children in Need, and in that capacity has worked closely with young people with disabilities including achondroplastic dwarfism. The production team is very well aware of, and sympathetic to, the sensitivities of those affected by disability to humour that alludes to it.”

The problem with imposing standards for offensiveness in humor is that we have all had our jaws drop in disgust, and we have all urged a disgusted person to lighten up. This is why the most current theory about humor is founded on the concept of benign violation. A joke makes you laugh when it strikes the perfect balance between fun and shock. It fails when it comes off as too soft or too harsh.

QI was reprimanded in 2011 for quips about a Japanese man who survived both the Hiroshima and Nagasaki atomic bombings. The show had until then featured many jokes about World War II, but none involving the crimes against humanity, or any specific victim of the war.

In 2013, the satire magazine The Onion for the first time in its history fired a staff member and issued a public apology for referring to 9-year-old Quvenzhené Wallis as “a c**t.” Critics pointed out that sex jokes can be funny, jokes about kids being annoying can be funny, but sex jokes about a specific child referred to by name are indefensible.  

Similarly, Ofcom argues that Carr’s second line (“And if you’re offended by that, grow up!”) is what placed him in breach of the code of conduct. They found unacceptable his “apparent suggestion that those with dwarfism would not be justified if they felt personally offended by his attempt to derive humour from their condition.”

It seems easy to argue why I hope for a day when non-dwarfs no longer double over at the mere mention of my existence, just as they no longer double over at the mere mention of other minorities. Yet it is enormously difficult to argue what to do to ensure that day will come. I began this blog by documenting all the different sorts of media—both the high-brow and the dreadful—that took cheap shots at dwarfs. In the four years since, I’ve never been at a loss for material.

For now I feel we should keep the rules simple. I propose a telecommunications ban on jokes about people with dwarfism except by people with dwarfism. If the public so desperately needs puns about height and size, then give Peter Dinklage and Warwick Davis and Leonard Sawisch and Meredith Eaton more screen time. And if Jimmy Carr thinks that’s unfair, he should grow up.

I know about a limb-lengthening procedure that could help him out.

 

 

Can We Understand What It Is Like To Hear Sound for the First Time?

17 Jan

listen(Image by Jay Morrison used under CC license via)
 
In the 1990s, Cristina Hartmann was one of the first of a few hundred deaf and hearing impaired children in the United States to undergo surgery for a cochlear implant. She has written extensively about the experience of hearing sound for the first time after the implant in her right ear was activated, most recently this month on Quora.com:

My mother was the one who told me, “Raise your hand when you hear something.” That statement left me baffled. What was I looking for? It was a bit like searching for Waldo when you didn’t know what he looked like.

In that tiny, windowless room deep in the large Manhattan hospital, the audiologist began tapping away at her keyboard. Everyone stared at me, even a woman standing in the doorway whom I had never seen before. I felt the heavy weight of expectations on my shoulders. I had to do something. I concentrated very hard, searching for the mysterious, indefinite Waldo. Whenever I felt anything, an itch or a breeze, I raised my hand slowly, searching everyone’s expressions for whether I had gotten it right or wrong. Nobody gave me any confirmation, so I went on guessing. Twenty-five years later, I realize the whole thing was a show that I performed. I knew this was a momentous event, and I didn’t want to disappoint….

As a congenitally deaf child (who was a bit long in the tooth at 6), I had never formed the neural pathways for my brain to even begin processing auditory stimulation. In the fashion of the ostrich, my brain ignored the strange stuff, and I remained as deaf as I had been an hour prior…

It took months and plenty of therapy for her brain to adapt. Thirteen years later, the activation of a second implant, this time in her left ear, proved a more harrowing experience than the first:

As the audiologist began the beep sequence, I burst into tears and involuntarily clenched the left side of my face. She looked up, puzzled. “Why are you crying? You’ve had this before!” she said. The pain was like sparklers going off on the left side of my head. The stimulation, as little as it was, completely overwhelmed me.

Even though I had already laid the neural pathways for auditory stimuli for my right ear, my brain was unprepared for the stimuli coming from the left side. Since my brain had already experienced this type of stimuli, it could process it, but it was still sensory overload. That stuff hurts. It took me months to acclimate myself to the new implant, but in the meantime, I cringed every time I turned it on. As I said, laying new neural pathways takes work.

Hartmann was later told by the mother of another patient, “Once they started with the beeps, [my daughter] screamed and cried.”

Such narratives exist in stark contrast to the YouTube videos of newly activated implant users laughing and smiling—and, in one case, crying for joy—that have been bouncing around the Internet with far greater frequency. While both narratives provide important information for those considering cochlear implants for themselves or their children, they are also an important contribution for the greater public in our understanding of what it means to be deaf.

It makes sense that crossing out of the world of silence into the world of sound is just as disorienting as its opposite. A hearing person with a middle ear infection strains to perceive the sound of speech, and a deaf person with a new cochlear implant strains to tune out noise pollution: the knocks of a radiator in another room, car doors slamming on the street, wind, footsteps, not to mention the countless background beeps and clicks of the Digital Age. After all, when a baby leaves the womb, she does not instantly adapt to her new home. She comes out crying. There’s too much light and not enough warmth. And, if she is not deaf, there is too much sound.

Speech is no less difficult to learn than Sign language, just as English is no less difficult than Chinese. The ease with which we learn one form of communication or the other depends entirely upon our personal experience and place in the world. For those of us who have grown up hearing speech, the viral videos communicate something very different than for those who grew up in Deaf culture.

While the experiences of utter delight portrayed in the videos are valid, their popularity contributes to an oversimplification of the issue. Watching a toddler smile upon finally hearing his mother’s voice for the first time sends a very strong subliminal message: Being deaf must be worse than not being deaf, and therefore anyone would want to join the world of the hearing. But the general public as an audience is already biased toward the hearing world’s standards of happiness. We are moved by the sound of loved ones uttering our names but not at the image of them signing our names because our culture does not rely on—and therefore does not highly value—Sign language.

This what inspired Lalit Marcus, the daughter of deaf parents and an active promoter of Deaf culture, to pen an article for The Wire titled, “Why You Shouldn’t Share Those Emotional ‘Deaf Person Hears for the First Time’ Videos”:

I want to make it clear that I don’t have a problem with people who choose to get cochlear implants. Medical decisions are painfully personal… I’m all for people making the health choices they think are best for them. What bothers me are the maudlin videos produced out of someone’s intense, private moment that are then taken out of context and broadcast around the world. What bothers me is how the viewer never learns how the individual came to the decision about their implant, which factors they took into account, whether their medical insurance covered it. Sometimes we don’t even learn their names.

This gives me pause. I consider the clip of me removing my casts to look at my newly lengthened legs, which featured 15 years ago in the HBO documentary Dwarfs: Not A Fairy Tale and last year on Berlin’s public station. The moment was simply joyous—as was the moment I stood up, let go of my friend’s hands and took my first steps—but the story behind it was abundantly complex. Which hopefully both documentaries portray.

I have endeavored to communicate that through this blog and all the media work I have done for the past 20 years.

Limb-lengthening and cochlear implant procedures are markedly different in several ways. Limb-lengthening, for example, does not threaten to endanger another language. But it does threaten to break ranks in the dwarf community through the controversy of altering versus accepting extraordinary bodies. Both procedures have proven to evoke vitriol among their proponents and detractors.

Hartmann reveals:

Most of my deaf friends were good about my CI. They didn’t mind it, except for the fact that my speech therapy cut into play time. That being said, people in the Deaf community felt free to make pointed and derisive comments about my CI. I still get these comments, even almost 24 years after my surgery. To some, I’ll always be a CI-wearer and a turncoat.

The CI advocates aren’t any better, if not worse.

I have very pleasant relationships with many parents of implanted children and CI users. I, however, have also been called a failure because I still use [American Sign Language] and don’t speak perfectly. I’ve also seen a mother run across a room to prevent her child from signing to another deaf child. I’ve been scolded for making gestures and looking too “deaf.”

The debate, of course, is ongoing.

But for those of us not faced with opting for or against a cochlear implant, we are faced with the challenge of overcoming our bias and remembering that Deaf culture is no less valid than the hearing culture we inhabit. Especially when those admittedly tantalizing videos wind up in our Facebook feeds.

 

 

The Problem of Dwarfs on Reality TV

30 Aug

voyeurism(Image by Natasha Mileshina used under CC license via)

 

The new television schedule has kicked off both in the U.S. and the U.K. with the usual plethora of reality TV shows and the usual high number of shows zeroing in on people living with dwarfism: The Little Couple; Seven Little Johnstons; Our Little Family; Little Women of L.A.; and the grandfather of them all, Little People, Big World. Besides the patronizing titles and taglines, the shows feature factoids about dwarfing conditions and lots of melodrama thrown in with some social critique lite.

Having handed my life story over to a journalist for the umpteenth time this past spring, my husband and I recently discussed how important it is to be able to trust that your storyteller will not exploit you for entertainment value. It takes a perceptive mind and an agile hand to elucidate dwarf-related topics like bio-ethics, self-image, political correctness, beauty standards, harassment, adoption, job discrimination, pain management, and reproductive freedom—all of which could and have filled scholarly journals and books—via mere sound bites. At one point in the conversation my husband paused and said, “Just to make sure we’re on the same page, honey – we’re never appearing on reality TV. Right?”

I laughed and nodded reassuringly.

He was not unwise to worry.

Reality TV offers their subjects fame at the expense of their dignity. Documentaries and news features also carry a risk for this, but one element that distinguishes reality TV from journalism is the rock-solid guarantee of fights, tears, and bad-mouthing. For some participants there may be gratification in the knowledge that millions of viewers are interested in you enough to want to watch how you live every waking minute of your life, but it comes with the unspoken fact that they’re also waiting for you to slip up so that they have a good story to hash out among their friends and in gossip columns.

We are all vulnerable to voyeuristic temptation and the media knows this. It’s why it offers us up-close shots of survivors’ tears as soon as possible, and it’s why we click on them, despite recent and compelling arguments that this is socially irresponsible. The message of reality TV seems to be that no one really ever moves beyond middle school jealousy and superficiality, so we might as well let it all hang out. The better angels of our nature be damned.

Years ago, Cathy Alter mused via a glib article in The Atlantic about her rather bizarre obsession with dwarf reality shows. The greatest revelation came from her therapist, who explained, “I think regular size people feel more secure as people when they can observe midgets… I think that contrast is validating because we tell ourselves that at least there are people who have it worse, because they are small… We need the midgets to feel normal.”

This confirms what I have always suspected and, admittedly, feared. That millions of people are watching under the guise of wanting to understand difference while ultimately enjoying getting to look at lots of juicy pictures of freaks.  This is why these sensationalist shows do so well, while earnest, in-depth documentaries like Little People: The Movie remain out of print. Before the birth of reality TV in the late 90s, dwarfs were most often featured on daytime talkshows, alongside episodes featuring people caught in affairs and people who believed they were the reincarnation of Elvis.

As often the only dwarf in a given person’s circle of acquaintances, I have been told by many how touching they find these shows. How wonderful it is to see that “dwarfs are just like everyone else!” I can accept that there will probably always be a market for shallow entertainment that twists tragedy into soap opera and reduces the complexities of life into easy-to-swallow sentimentality, no matter how far society progresses. Tabloids will continue to exist because millions of people—including kind, intelligent people I know—will continue to buy them. In this regard, the individual shows are not so much problematic as is the fact that they are where TV viewers are most likely to see people with dwarfism.

Actress Hollis Jane, who called out Miley Cyrus last year for exploiting performers with dwarfism as sideshow acts, explained this summer why she turned down a contract to appear on Little Women of L.A.:

Other than Peter Dinklage, Tony Cox (Bad Santa) and Danny Woodburn (who played Mickey Abbott on Seinfeld), it’s nearly impossible to name successful actors and actresses who also happen to be little people. People get upset about the Kardashians representing women in America but for every Kardashian there is a Meryl Streep, a Natalie Portman, or a Zoe Saldana. Little people don’t have that. I have wanted to be an actress since I was in first grade and I played the angel, Gabriel, in a nativity play. I held firm to this dream until sixth grade when a parasitic thought crawled into my head and told me that I would never be an actress because I was a little person. I realized that since there was no one on television who looked like me, it meant that there would never be… When Game of Thrones premiered, my world was rocked. Peter Dinklage was doing the impossible. He was being taken seriously as an actor without exploiting his height for shock value or a joke. The night he won his Emmy, I cried for an hour.

She adds, “I have nothing against the women on these reality shows. There is a part of me that thinks it’s great we have little people on TV in any capacity…but I also think we deserve more than that.”

If the general public truly believed this, if reality TV viewers truly saw their dwarf subjects as their equals rather than curiosities, then we would see a lot more dwarfs as newsreaders and game show hosts, on sitcoms and dramas, in romcoms and thrillers, playing the leads and the heartthrobs and the bella donnas. Perhaps that day will come, but for now few people can name a single dwarf actress and many dwarfs get told that they look like “that guy on the show about the little people.” That’s our reality.

 

 

What Makes A Story “Depressing”?

24 May

I recently read Good Kings Bad Kings by Susan Nussbaum, winner of the PEN Bellwether Prize for Socially Engaged Fiction and several other accolades. When describing it to friends as a story told from the perspectives of patients and staff at an institution for severely disabled minors, I got a common response: “Well, that sounds like a fun read!”

I will perhaps never fully grasp what distinguishes a depressing story that brings you down from a great drama that hooks you from the start. The bestselling books in the English language are about a boy who must face down his parents’ killer, a girl who spends hours in her lover’s Red Room of Pain, and a high schooler who can’t wait to have a monster baby with an emotionally disturbed vampire. Crime shows and novels continue to be wildly popular through the generations. If you turned on the closed captioning for most of the top-grossing films of the last 30 years, you would be reading, “[scary music],” every few minutes.

Why do we embrace all this while believing that a book that starts off with the rants of a teen in a wheelchair might be too heavy to handle?

Of course, realistic portrayals of suffering pack a far more visceral punch than contrived ones. Pirates of the Caribbean and Star Wars will widely be perceived as less distressing than The Piano and Love Is Strange because, despite their carnage, the adventure stories never get inside their victims’ heads. Touchy-feely tales embraced by mass audiences tend to have happy endings, or at least the satisfying downfall of an easily identifiable villain. This is why, as Salon’s book critic Laura Miller has pointed out, a story is schlocky and sentimental insofar as it lies to the audience.

And Good Kings Bad Kings does not lie to its audience. I embarrassingly ended up having to conceal tears streaming down my cheeks while sitting on a bus as I read about one particularly beguiling character who (SPOILER ALERT) dies after getting third-degree burns in the shower due to human error and then catching pneumonia after surgery. I can attest that such a tragic scene is representative of reality, not sheer melodrama. I lived in a pediatric hospital for five months when I was a pre-teen, and the next year I learned that one of my friends had died after his breathing apparatus failed due to human error, and another one had died from catching pneumonia after surgery.

Living at that hospital was far from easy. As I’ve written before, listening to others share their realities in group therapy was one of the most humbling experiences I’ve ever had. But while the human fear of death and suffering is rational and something I never lost, living alongside the patients did knock down many of my fears of illness and disability that were irrational.

Within a few weeks on the ward, I was no longer disconcerted at the sight of head injuries, tracheostomy tubes, stumps, or burned faces. At first I stared. Many of the owners stared back at me and my Ilizarov fixators. We all stared at anyone with a condition we hadn’t seen before. And sometimes we stared at each other’s wheelchairs out of envy. But the constant exposure soon rendered such features as mundane to us as glasses, braces, and freckles. We were used to it. What is the harm in allowing the rest of the world to get used to it, both through inclusion in society and representation in books and film?

As a study published in Science found, reading literary fiction makes you more emotionally intelligent. As The New York Times reported, “This was true even though, when asked, subjects said they did not enjoy literary fiction as much. Literary fiction readers also scored better than nonfiction readers — and popular fiction readers made as many mistakes as people who read nothing.” The results are unsurprising when literary fiction distinguishes itself from popular fiction by avoiding formulas and stereotypes. We’ve already seen that avoiding stereotypes fosters more creative, innovative thinking. Now it makes us better at understanding each other, too.

Indeed, literature provides characters who are realistic because they are just as complex as we all are. Realistic characters don’t make us the readers like them. They make us understand them, while simultaneously being a little bothered by them because we recognize their faults and selfish impulses in ourselves. In other words, a great literary feat doesn’t show you good people triumphing over the bad. It shows you how and why we hurt each other.

The harm in Good Kings Bad Kings is not wrought by cackling villains upon innocent angels. It comes from the fear, anger, and selfishness easily recognizable in everyday life. And it is visited upon disabled people who are not dying to escape their diagnoses but who are sick of the condition our society has left them in. As Susan Nussbaum writes in her afterword:

I used to wonder where all the writers who have used disabled characters so liberally in their work were doing their research. When I became a wheelchair-user in the late seventies, all I knew about being disabled I learned from reading books and watching movies, and that scared the shit out of me. Tiny Tim was long-suffering and angelic and was cured in the end. Quasimodo was a monster who loved in vain and was killed in the end, but it was for the best. Lenny [in Of Mice and Men] was a child who killed anything soft, and George had to shoot him. It was a mercy killing. Ahab [in Moby Dick] was a bitter amputee and didn’t care how many died in his mad pursuit to avenge himself on a whale. Laura Wingfield [in The Glass Menagerie] had a limp, so no man would ever love her…

None of the characters I write about are particularly courageous or angelic or suicidal, bitter for their fate, ashamed to be alive, apt to kill anyone because they have an intellectual or psychiatric disability, or dreaming of being cured or even vaguely concerned with being cured.

And that’s what makes realistic portrayals of disabled people so significant. Not for the sake of inspiration porn. Not to make us proud of how good we have it. But to welcome disabled people’s lives, stories, and perspectives into the arts and therein mainstream society.

The assumption that a story about severely disabled characters must be overwhelmingly upsetting is precisely the mentality that marginalizes severely disabled people. If we won’t read their stories because they’re too sad, we’re not very likely to know how to approach them in real life.

And for all its lines about the importance of realistic stories for the sake of galvanizing greater empathy, The New York Times never reviewed Nussbaum’s award-winning book.

 

 

Could FDR Be Elected Today?

26 Oct

47-96 2331(Public domain image used under CC 2.0 via)

 

If you’ve happened to set aside 14 hours in the last month for Ken Burns’ The Roosevelts: An Intimate History, which aired on public television in the U.S., you know it affords considerable attention to FDR’s disability. Most touching is a 10-minute feature about Warm Springs, the Georgia health spa and rehabilitation center for polio patients, which Roosevelt founded and which soon became his primary vacation destination throughout his political career. Former employees and patients tell of him shaking the hands and asking the names of every patient, swimming alongside them and dunking whoever got within arm’s reach.

His biographer Geoffrey C. Ward explains:

It allowed him to be unself-conscious about polio… I don’t care how magnetic or self-confident you are, or you think you are… At Warm Springs, he could: not wear his braces, and go to the swimming pool, and have everybody see how small his legs were and it didn’t bother him at all because there were people there with worse problems…

He loved being one of them and the number one of them at the same time… To see someone so famous, who suffered from exactly the same problems that you suffered from, meant an enormous amount to all of the people who went there. Most of the people who went there went there mostly out of despair, at least at first. There wasn’t any other place to go. And here was this laughing giant who would kid them, and who would make the kind of awful sick jokes about being handicapped that other handicapped people love, but that you can’t share with anybody else. He loved doing that.

FDR told the staff that all at Warm Springs were equals, and many interviewees point to this as the beginning of his dedication to humanitarian, egalitarian projects. “It is tempting and probably true to say that polio gave FDR the gift of empathy,” says George F. Will. “There was no suffering that he could not in some sense relate to. And also, just as soon as the iron [brace]s were clapped onto his legs, the steel entered his soul. By having to fight through the constant pain of therapy that was unforgiving in its demands and not very fulfilling in its success.”

FDR had intended to market Warm Springs as both a vacation resort and a health spa, hoping the profits from the hotel would fund the rehabilitation center. The hotel ultimately failed, according to Burns’s documentary, “because prospective guests were scared off by the presence of polio patients.” Outside Warm Springs, attitudes toward disabled people were hardly tolerant. When voters elected a disabled president in 1932, 1936, 1940 and 1944, they did so in spite of his disability, not in acceptance of it.

Doctors attested to his physical and mental fitness in newspaper articles that asked, “Is he healthy enough to be president?” When Teddy Roosevelt’s family publicly opposed FDR’s candidacy, his daughter Alice took an ableist tack. Her famously hyperactive father had had the strength and will power to overcome his affliction, she argued, referring to TR’s childhood bout with asthma, while FDR’s paralysis from polio was a sign of his weakness and the reason why he embraced such wimpy social policies.

And here I thought Ann Coulter was a modern phenomenon.

Both Ken Burns and Geoffrey C. Ward contend that FDR could not be elected today. Ableism was pervasive in the 1930s and 40s, and it was well understood that publishing photographic evidence of his disability—his braces hidden by the podium, his difficulty getting in and out of cars, his regular falls—would be too detrimental to his image. But the press obliged. Photos like this one remained out of the public eye. Today neither the media nor bystanders with cell phone cameras afford anyone such privacy.

Appearance is as important as ever to politicians, if not more so since images in film, in print, on television, and online are countless times more prevalent now than they were in FDR’s time. This ubiquity is both the cause and the result of our expecting to see celebrities up close and from every angle. While Germany distanced itself from the idea of demanding charm and showmanship from their political leaders in the post-war era, America became ever more preoccupied with it, giving more credence to the photogenic Kennedys than any other presidential family.

The power of representation cannot be underestimated. We all like to be able to identify with famous and successful people because it imbues us with optimism about our own chances for success. We watch documentaries about celebrities’ lives in the hopes of discovering that they are the kind of person we would like, and who therefore would like us, if they ever had the chance to get to know us. Such idol worship, whether severe or mild, is of course ultimately irrational. But it satisfies the emotional need for recognition. If we cannot go on to be president for whatever reason, we can enjoy living vicariously through someone who does.

Ward is right when he speaks of how meaningful it was for ordinary patients with polio to see a sitting president with polio. But it is discouraging to consider that only those who could make the trek to Warm Springs were able to have the experience. And it is discouraging to consider Ward and Burns’ contention with its implication that disabled people today cannot have the experience of seeing a visibly disabled president because the American people will not elect one. Are they right?

In our age of a million media images, we commonly see senators, singers, elite athletes and film stars visiting disabled and ill children to boost their morale. But none of these celebrities are simultaneously as enormously powerful and as visibly disabled as Franklin Roosevelt was. Indeed, no one since his time ever has been.

Would You Rather Be Born Disabled or Become Disabled? (Part Two)

28 Sep

Dead body(Image by Stéphane Lavoie used under CC 2.0 via)

 

Most of them were not born with dwarfism. This is what I observed from a history of eminent dwarfs who enjoyed some degree of success outside of freak shows before the minority rights movements of the late 20th century. Most of them, such as Toulouse-Lautrec, experienced stunted growth as the result of an accident or an illness well after birth. Well after it would have been socially acceptable for their parents to give them up or hide them away. Such cases account for a very small minority of people with dwarfism, yet they dominated the scene of non-marginalized dwarfs for most of Western history. This got me thinking.

I conducted a crowd-sourcing experiment on Facebook, asking friends to name very famous people with severe physical disabilities. They had to be household names, nothing along the lines of “that little guy on Game of Thrones” or “that comic on that show from the Eighties who had a muscle problem.” The list of responses bore no surprises: Helen Keller, FDR, Beethoven, Frida Kahlo, Ray Charles, Christopher Reeve, Stephen Hawking, Michael J. Fox. All but two of them—Stevie Wonder and Oscar Pistorius—incurred their disability after infancy. Was this another sign of congenitally disabled people being hidden away? The vast majority (85%) of disabled people become disabled after birth. But the 15% whose conditions are congenital appear to be underrepresented in public.

Does society more readily accommodate those who lose certain abilities than those who never had them to begin with? Anthropologists know that for most of human history any injury or illness without a visible cause was presumed to be the result of black magic or a vengeful deity. From the European mythology of the changeling right up to the Nazi condemnation of genetic “monsters,” congenitally disabled people have been traditionally viewed as non-human and segregated accordingly. Vestiges of this remain in our general tendency to simply not consider congenitally disabled people as potential friends or partners or even peers, in contrast to the conviction that we should stick by our loved ones no matter what befalls them. Pop icon Dick Clark was warmly welcomed back to television as a co-host after his debilitating stroke, but I’ve yet to find a TV presenter in America who was born with a speech impairment like the one Clark developed. I don’t have the funding to empirically test my hypothesis, but you don’t have to delve too far into mainstream media to come up with stories, articles and interviews spotlighting someone who seemed to have it all until one fateful day when tragedy struck. And notice the comparable paucity of such resources on people who have always lived that way.

I squirm as I write this for fear of implying that those who become disabled have an easy time of it. Far from it. It would be utterly callous to ignore the often indescribable strain illness and injury can inflict on relationships, and the horrific social isolation that too many patients face. There’s a reason that “fair-weather friend” is a well-known term. And the human fascination with suffering can be more voyeuristic than empathic.

But no matter the motive, it is always accompanied by the unspoken understanding that no one would ever want to become disabled. This is, in essence, the most universal view of disability: Who on earth would want to lose an ability of any kind?

Even as a congenitally disabled person I understand this. I would never choose to erase my dwarfism from my life experience. But I do not like becoming more disabled than I already am. After tendon injuries and surgery to combat stenosis, I miss being able to ride a bike, to walk barefoot, to cook and type and sit on benches for long periods without pain. And if tomorrow I were to lose my ability to hear, see, or walk, I would be distraught, to put it mildly.

But in voicing this, it is crucial for me—and everyone listening to me—to recognize that my becoming deaf would be a profoundly different experience from that of my friend who has been Deaf since he can remember. Many Deaf people with cochlear implants have told of how overwhelmingly unpleasant hearing sound for the first time can be: One man has “discovered that, far from being adorable, the voices of his grandchildren were rather shrill and often best experienced with the implant turned off.” That Deaf Guy comic strip tells of the authors’ son pitying people who don’t know how to sign.

Similarly, those who have always needed a wheelchair to get around tend to see it as no worse than needing shoes to get around. Yes, it’s inconvenient in a world where ramps are all too rare, just as it would be inconvenient for those of us who are ambulatory if most public facilities didn’t accommodate the shoes on our feet. But that difficulty is imposed by a society that fails to accommodate certain minorities, not by the disability itself. Congenitally disabled bodies do not notice what they lack. As so many have said before me, How can you miss something you never had to begin with?

Researching all of this has brought me to the following conclusion: As individual humans, it is harder for us to deal with becoming disabled than with being born disabled. But as a society, the reverse is true – it is harder for us to accept someone who is born disabled than someone who has become disabled.

As a result, those who were born disabled and those who have become disabled often find themselves on opposite ends of the argument. A woman like Stella Young, who has never been able to walk, is rightly insulted when people tell her she is brave and inspiring just for getting up every morning. (Her TED Talk below is worth every minute.) But a woman like Christine Miserandino, who is slowly losing the ability to walk, is rightly seeking others’ encouragement and support as she struggles to do something she once took for granted. (Her oh-so-quotable Spoon Theory has already been linked on this blog before.)

 

 

Because the majority of disabled people are like Miserandino, not Young, the discourse on disability is dominated by sympathy, fear and lamentation. It is hard for us to remember that we shouldn’t pity a woman with cerebral palsy for her spasticity when so many people with multiple sclerosis openly mourn their loss of agility. Those who become injured or ill are entitled to their grief and no one should ever attempt to silence them. But everyone should think beyond their own experience before they publicly decry their condition as unbearable. Especially when it ends up joining the chorus of ableism led by non-disabled people.

One of the most read articles at The Atlantic this month is a piece by bioethicist Ezekiel Emanuel who explains why he hopes to die before age 76:

[Living too long] renders many of us, if not disabled, then faltering and declining, a state that may not be worse than death but is nonetheless deprived. It robs us of our creativity and ability to contribute to work, society, the world. It transforms how people experience us, relate to us, and, most important, remember us. We are no longer remembered as vibrant and engaged but as feeble, ineffectual, even pathetic.

Emanuel is an amateur mountain-climber and a professional writer. He is entitled to feel upset at the idea of losing the abilities he currently holds most dear. And his other arguments about the drawbacks to longevity are as thought-provoking as physicians’ personal opinions on life-saving interventions. But his decision to openly denounce dependence and weakness as unproductive and undignified increases the lifespan of our culture’s ableism. How can we ever stop marginalizing disabled people if we continue to openly voice our fear of becoming like them?

The experiences of those who are born disabled and the experiences of those who become disabled are profoundly different and equally valid. Simply remembering that would change a lot.

 

 

What Do We Want? Visibility!

8 Jun

 

Leaving you this holiday weekend with the brilliant Maysoon Zayid whose TED Talk above includes myriad revelations well worth your time, among them:

One fun fact I learned while on the air with Keith Olbermann was that humans on the Internet are scumbags. People say children are cruel, but I was never made fun of as a child or an adult. Suddenly, my disability on the world wide web is fair game. I would look at clips online and see comments like, “Yo, why’s she tweakin?” “Yo, is she retarded?” And my favorite, “Poor Gumby-mouth terrorist. What does she suffer from? We should really pray for her.” One commenter even suggested that I add my disability to my credits: screenwriter, comedian, palsy…

Disability is as visual as race. If a wheelchair user can’t play Beyoncé, then Beyoncé can’t play a wheelchair user. People with disabilities are the largest minority in the world and we are the most underrepresented in entertainment.

Indeed.

 

It’s Probably Every Dwarf’s Dream to Be a Prop for Miley Cyrus

2 Mar

Freaks(Image by Mariana Rojas used under CC license via)

 

Miley Cyrus loves diversity. Just not, you know, discussing diversity and the complex history behind it. Since her performance at the Video Music Awards last September, she has drawn tremendous criticism for her treatment of the black backup dancers in her shows – cartoonishly imitating their dance moves, spanking them, simulating sex with them. Some, including Cyrus, have argued the portrayal is affectionate or even celebratory, while others perceive it as exploitative and reductive. Articles at Vulture and The Guardian likened it to a minstrel show.

Cyrus also uses dwarf dancers in a similar way. One of these dancers, Hollis Jane, has come forward to voice her regret:

Most of the time, getting a job purely because you’re a little person (in my opinion) is not a good thing. It is further fulfilling society’s idea that we are something to laugh at; that our value is simply to shock. We can all agree that right now all Miley Cyrus wants to do is make society’s jaw drop. So what’s more “weird” or “freaky” than having little people parading around in your show?

As someone who is trying to make it as a serious actress in this industry, not just trying to “be famous” or make money, there is nothing more frustrating than this stigma. The longer little people agree to be used as shock value, the longer it is going to take for us to be taken seriously.

I was a bear in Miley Cyrus’s VMA performance and it was my first time doing anything like that…anything where I was being used because of my height, not because of my talent. And I will be the first one to tell you that standing on that stage, in that costume was one of the most degrading things I felt like I could ever do. I realize not everyone shares my opinion and I might just be young and naive, but I feel like the acceptance of this kind of treatment has got to stop.

In an interview on Ronan Farrow Daily this week, Jane admirably pointed out that the problem lies in the broader culture, not just Miley Cyrus’s individual decisions.  Powerful stars, aspiring dwarf actors, the media, and media consumers all bear a responsibility to quell the demand for dwarfs in freak shows.

To which Cyrus said in her W interview with Farrow:

I don’t give a shit. I’m not Disney, where they have, like, an Asian girl, a black girl, and a white girl, to be politically correct, and, like, everyone has bright-colored T-shirts. You know, it’s like, I’m not making any kind of statement. Anyone that hates on you is always below you, because they’re just jealous of what you have.

To which I say, we really don’t need another Amanda Palmer out there, another millionaire whose ego is so very fragile we can’t ever expect her to buck up the courage to engage with people “below” her, or to admit when she’s been wrong. Every entertainer accused of perpetuating stupid stereotypes has the opportunity to prove whether they are a respectable artist or a pathetic narcissist. An artist is trying to communicate something, and therefore cares first and foremost about what they are communicating. A narcissist defaults to seeing themselves as the victim in every conflict.

Hopefully those who love Cyrus’s music don’t love the way she deals with minorities.

 

 

“Power for Good”

28 Jul

tumblr_mqm3ypKbXg1qz5q5lo1_500(Via)

 

Tropes are ideas we construct based on observing patterns in society and wanting to understand them. Stereotypes are ideas we construct based on hearing about patterns in society and accepting them at face value. Needless to say, stereotypes based on that which we have no choice about—our sex, gender identity, sexuality, ethnicity, nationality, physical traits, or mental abilities—usually do more harm than good.

Not only do they deny minorities equal rights and opportunities, but a recent study shows that embracing racial stereotypes leads to creative stagnation. So how do we combat them? 

In the wake of the Trayvon Martin verdict and President Obama’s call for a dialogue on race in America, Harvard researchers announced a competition to find the quickest, most effective method for getting people to let go of the prejudices they have about a certain group. The results? Calls for empathy and other try-to-put-yourself-in-their-shoes methods were largely ineffective.  What worked best was showing the participants counter-stereotypical images. World leaders with severe disabilities. Parents proudly painting their son’s toenails. Construction workers nursing their babies. Sons helping out with the housework.  Seeing is believing, apparently.

It is crucial to note that celebrating diversity can feel patronizing, especially to the subjects. The goal, after all, is to drive stereotypes to extinction so that observers find absolutely nothing extraordinary about any of the above images. Because the subjects do not feel extraordinary, at least not all the time – they feel normal.  No person who can qualify as a minority or counter-stereotype should feel pressured to spotlight their everyday life if they don’t want to.  But it is encouraging—if not unsurprising—to see that altering media portrayals of society alters a good deal of the prejudices plaguing too many corners of society.

As my friend Sarah Winawer-Wetzel recently said:

For me, it validates the importance of being out as a gay person. How else are people going to believe that a nice white Jewish girl who dresses femme and doesn’t look particularly counterculture can be queer if I’m not out like a friggin’ lightbulb everywhere I go? I’m not doing it just for me – I’m doing it so that when a little kid looks at the world and thinks about being gay, that kid sees the full spectrum of possibilities, not just a cultural stereotype. Those of us who control visuals and representations of people in the media need to remember to wield our power for good.

We often forget the power we wield when we have a stereotype in our hands, thinking it’s bigger than anything we can do about it. But it is not.  And that is wonderful.

 

 

When It Comes to Sex, Fair Is Fair

17 Mar

Boy Toy(Image by Ian used under CC license via)

 

Disclaimer: This post is going to talk a lot about sex, so for my relatives out there, don’t say I didn’t warn you.

***

I was recently walking around Tokyo’s Electric Town, a sensory overload of video game stores, electronics boutiques, and maid cafés.  Wait, what?  The young women outside these cafés were dressed in lacy maids’ outfits, complete with fishnets, platform shoes and cat ears on their heads.  Addressing their customers as “Master,” they apparently serve them on one knee, providing spoon-feedings and massages to those willing to pay extra.  These cafés were everywhere.

The guy accompanying me probably sensed my feminist judgment before I voiced it.  “So, what would have to change for you to be okay with it?” he asked. 

Quite simply, half the cafés would cater to female customers, hosted by provocatively dressed, eager-to-please, teenage-looking boys.  Half the people on the street in Tokyo are women, but the maid cafés offer them only work, not service.  No wonder nerd women feel so alone.  But it’s not fair to single out Electric Town.  Every well-known naughty incarnation of sex from the Playboy Mansion to token event dancers embodies the same problem: Whether selling dominance or submission, it’s all for the straight male customer.  In Delusions of Gender, Cordelia Fine has identified one of the panes of the glass ceiling to be the not uncommon tradition of businessmen bonding by going to strip clubs together.  The most a straight female customer can hope for at such venues is to be bored, however much her partner may hope she’s taking down notes. 

Just as the word “doctor” or “lawyer” almost always causes a listener to envision a man, the word “escort,” or “stripper” evokes a woman.  Girls are aware of this from the earliest of ages.  Many have argued with me that the lack of lascivious fare catering to female clients is indicative of supply and demand; women aren’t as interested in commercial forms of sex, so there aren’t any.  It is true that the demand may not be overt enough for the market to notice, but this is not because it is non-existent.  It is because, like the demand for non-heteronormative sexuality, it has been discouraged for millennia. 

Men are animals, they can’t help it, goes the traditional view.  But women are not and thus they should only be sexual when satisfying men’s desires, either by playing the role of the virgin he wants to have a family with or the whore he wants to have fun with.  Yet if women’s sex drive is indeed naturally lower than men’s, why are so many societies so concerned with suppressing it? 

Around the world from Kuwait to Kansas, authoritarians go to great lengths to reduce if not altogether prohibit female sexual expression.  Over 92 million girls have undergone genital mutilation in Africa alone in order to reduce their libido.  American evangelical Christians oppose mandating the HPV vaccine for pre-teen girls, arguing that reducing the fear of cervical cancer will increase girls’ promiscuity.  In Haiti, Jordan, Syria and Morocco, “honor” killings and crimes of passion in instances of adultery are still legally permissible (only) when it is a female who has had pre-marital or extramarital sex.  A 2002 U.N. report found legislative provisions allowing for partial defense of “honor” killings in Argentina, Ecuador, Egypt, Guatemala, Iran, Israel, Peru, the Palestinian National Authority, and Venezuela.  Let me repeat: Politicians, religious leaders and parents endorse scaring women with the threat of murder, others with the threat of cancer, to control their sexuality. 

I’m sure this sounds outrageously antiquated to most readers, but aside from the fact that it is a grave reality for women in many cultures, vestiges of this machismo endure in secular culture.  Guys still try to insult each other by attacking their mothers’ sex lives, and women’s bodies and promiscuity are still discussed far more than men’s.  Have you ever heard anyone say, “Your dad’s a whore”?  Or heard a guy who won’t put out described as “frigid”?  Chloe Angyal summed it up beautifully at New York’s Slutwalk this past October:

The idea behind the word “slut,” and the beliefs and behavior that it justifies, is alive and well.  This idea says that sex decreases a woman’s worth.  This idea says that a woman who steps outside the bounds of acceptable femininity by enjoying sex, or seeking sex, or having a lot of sex, deserves whatever sexual violence is done to her… This idea says that almost anything a woman does, says, wears or is, can be used to justify that violence. Are you confident and outgoing?  That could have been construed as flirting, and that is practically consent.  Are you shy and reticent?  You should have been confident and outgoing enough to firmly say “no.”  Are you considered attractive by the standards of our culture?  Well, you know how men get around pretty women.  Are you considered unattractive by the standards of our culture?  What man would force himself on an ugly woman?  You must have asked for it.  This idea sets up a no-win situation, where no woman is pure enough to be blameless.

However, as women’s scantily clad bodies are condemned in Congress and in churches while being used to advertise everything from ice cream to phone companies, I suspect it’s not only the suppression of female desire at work.   When I imagine men being marketed as boy toys, the first obstacle that comes to mind is homophobia.  I’m sure you can just hear the shouts of “Yuck!  Sick!” that would erupt if male butts were given as much attention on television as female breasts are, or if guy-on-guy action were insinuated in music videos as frequently as lesbianism is.  Men who dislike the self-objectifying performances of Mick Jagger or Robbie Williams or male ballet dancers usually call them gay slurs.  I feel safe in assuming similar insults would be hurled by many male Star Wars fans had the master at Jabba the Hut’s palace been a madam who enslaved Luke Skywalker on a chain in a pair of golden briefs.  In 2008, a study found nearly 40% of women appearing in films wore sexually revealing clothing, compared to 7.8% of men, proving that straight women put up with sexy representations of their gender with the same frequency that straight men are shielded from it.  The homophobia behind these cultural patterns is the very same that restricts gay sexuality to the gay district.  And it is often to these corners that lusty women go.  Sex and The City was addressing a real problem when it encouraged women to watch gay male porn in order to see men that are truly sexualized. 

However, as discussed in my last post, sexualization comes at a price when it is the result of overwhelming demand, not free choice.  The American Psychological Association says a person is sexualized when their “value comes only from his or her sexual appeal or behavior, to the exclusion of other characteristics; [when] a person is held to a standard that equates physical attractiveness (narrowly defined) with being sexy; [when] a person is sexually objectified—that is, made into a thing for others’ sexual use, rather than seen as a person with the capacity for independent action and decision making.”  Self-objectification is a free choice an individual can make only insofar as that individual has never been pressured into it.  Bombarded with the media images cited above, women are taught to self-objectify from girlhood on.  Even the professional dominatrix, no matter how powerful, is fulfilling a male customer’s requests.  The beauty standards embodied by these sexualized models result in women and gay men suffering from eating disorders at far higher rates than straight men.  In Cinderella Ate My Daughter, Peggy Orenstein writes:

I object—strenuously—to the sexualization of girls but not necessarily to girls having sex. I expect and want my daughter to have a healthy, joyous erotic life before marriage.  Long, long, long before marriage.  I… want her to understand why she’s doing it: not for someone else’s enjoyment, not to keep a boyfriend from leaving, not because everyone else is.  I want her to do it for herself.  I want her to explore and understand her body’s responses, her own pleasure, her own desire.  I want her to be able to express her needs in a relationship, to say no when she needs to, to value reciprocity, and to experience true intimacy.  The virgin/whore cycle of the pop princesses, like so much of the girlie-girl culture, pushes in the opposite direction, encouraging girls to see self-objectification as a female rite of passage. 

Reciprocity is the key word.  If you want your girlfriend to accompany you to a maid café, you’d better be willing to follow her to a Fantasy Boys’ Strip Tease.  If you want her to learn a naughty routine to add some spark, you’d better learn one for her.  If you want your wife to be fine with you sleeping around, you’d better encourage her to have affairs.  If you ask for oral sex, you’d better be willing to give it.  And don’t you dare make your daughter wear a purity ring until marriage if you won’t demand the same of your son or your own self.  Indeed, if the social pressure that urges women to submit were diverted to straight men, the resulting dialogue would reveal a great deal about how much free choice really enters into it. 

Studies in sex-positive feminism and BDSM culture reveal that many self-confident, consenting individuals are interested in the sex industry, but without the gender disparity pop culture promotes.  And while it is true that many women have no interest in commercial forms of sex like pornography or strip clubs, nor do many men.  Whether the red light district is silly or sexy is a matter of taste.  Whether it is male chauvinist is not.  In the words of one YouTube commenter—a rare source of inspiration—“this is what music videos would look like if women ran the world.

Look ridiculous?  In the words of Nadine Gordimer, “So many sensual moves are, if you set yourself outside of them.”  It’s no more ridiculous than the song it parodies or the cat ears donned by the Electric Town maids.  If every second maid were replaced with men posing like Bret and Jemaine do, I’d find nothing wrong with Electric Town, except for its carbon footprint.