How To Do Empathy Wrong

23 Nov

(Via)

 

Have you ever had someone say to you, “I know exactly what you’re going through!” only to have them then rip into a monologue that proves they have no idea what you’re going through?

SarahKat Keezing Gay, whose newborn son needed a heart transplant, has had plenty of experiences with this:

One of my favorites has always been people comparing children’s issues with those of anything that isn’t a child. “Oh, I know just what it’s like to have a newborn. My cat wakes me up all the time!” or “Having kids is expensive, sure, but it’s nothing like having a horse.”

With Hud’s medical stuff, most of the comparisons were to really old people with totally different, usually terminal conditions. “I know just what it feels like to wait for a baby to get a heart transplant. My 85-year old great-uncle had liver disease, and waiting for his transplant was so hard on my family!” … This was particularly chafing when entangled with glaring inaccuracies, such as: “He’s sick? When my grandma went through chemo, she looked terrible, so he must be taking lots of herbal supplements to stop the hair loss and everything, right?”

She is hardly the first survivor of trauma who has had to deal with blunt comparisons that are ultimately unhelpful. In college, I witnessed a trust fund kid compare his worries about struggling to pay for a new car to a trailer park kid’s worries about struggling to pay for his course books: “I hear ya, bro – I’m struggling, too!”

The best way to get along with the rest of the world is to try to understand it. And most understanding is achieved by comparing the unknown to that which we already know. But there is an unproductive tendency in the it’s-a-small-world-after-all mindset to relativize all hardship to the point of equating all hardship. Twilight star Kristen Stewart told interviewers that unwanted paparazzi photos made her feel “raped.” Millionaire businessman David Harding pronounced the words “geek” and “nerd” to be “as insulting as n*****.” Famed divorcée Elizabeth Gilbert of the Eat, Pray, Love franchise declared that divorce can be more anxiety-inducing than the death of a child, asserting this in a book devoted to gushing about the joys of her new-found love. I don’t know Gilbert or Harding or Stewart personally, so it would be presumptuous to conclude that they must simply be naïve and have no idea what trauma or death threats or bereavement feel like. But their utterances are false equivalencies that alienate more people than they enlighten.

In the recent words of NPR’s Annalisa Quinn: “ ‘We’re all the same on the inside!’ is not that far from ‘Everyone is like me!’ which is not that far from ‘My perspective is universal!’ ” The phrase I know exactly what you’re going through, while sometimes well-intentioned, can ultimately be silencing because it puts the listener in the awkward position of having to choose between keeping quiet and trying to find a gracious way to say, “No, you don’t know what I’m going through.” Saying such a thing can come off as angry and self-involved, so most polite people opt instead to hold their tongues, sparing the other person their upset but also an opportunity to be taken out of their comfort zone and learn about an experience they’ve never had.

In his adorable piece “How To Be Polite,” Paul Ford writes that the fastest way to make a friend as an adult is to ask them what they do for a living and—no matter what their job is—react by saying, “Wow. That sounds hard.” The last time he used this line he was talking to a woman whose job it was to pick out jewelry for celebrities.

It’s a sure-fire way to a person’s heart because we all think we work really hard. We all think we have had trials and tribulations. The blues would never have broken out of the Mississippi Delta if we didn’t. But while our lives are all equally important, they are not equally painful:

 

 

Everyone on earth is privileged in some way, but not everyone has experienced severe pain.  Arguing with family, enduring rejection in love, searching for a lucrative and fulfilling job, dealing with the bodily break-down that comes with the onset of age – it is all cause for pain. The pain is both valid and common, which is why there is a plethora of books and films and songs about these experiences. And which is why we expect such pain from life and why it is fair of others to expect us to learn how to deal with it. It is substantial, but it is not severe.

Those who experience severe pain are, thankfully, becoming a minority as our society becomes ever safer and healthier, with rates of life-threatening illness and violence lower than they have ever been in human history. But misery loves company, and severe pain brings on not only profound stress but great loneliness. That’s why support groups exist. Having friends who try to understand, not because they see a chance to tell their own story but because your happiness genuinely matters to them, is lovely. Their efforts signify bravery. But they can never offer the unique comfort of connection that blooms from really knowing what you’re going through.

This was clear when I recently spent an evening at a dinner table where I was the only one who did not have a parent who had died or disowned me. It is clear whenever I read Keezing Gay’s accounts of her baby’s transplant, which moves me to tears every single time, all of them merging to constitute but a drop in the ocean of what her family went through.

The middle-aged mother of a deceased teenager said to me months after her death, “Our friends in Utah got the wrong news and thought for a while that it had been me. That I was the one who died. And I immediately thought when I heard that, Why couldn’t it have been me?  I had a good life.  My life was good until this moment.”

My life was good until this moment.

Unlike mundane pain, severe pain so often brings perspective. Of course, whether or not it does ultimately depends upon the wisdom and strength of the individual. This fact is lost on those who uphold the long tradition of viewing severe pain as a beauty mark worth yearning for because it supposedly imbues the sufferer with automatic heroism. This tradition pervades many circles, though most often those of the young and artsy navel-gazers.

Wes Anderson, who may be our generation’s king of the artsy navel-gazers, captured this problem surprisingly well in Moonrise Kingdom. The scene involves two pre-teens: Suzy the Outcast, who is angry about her mother’s infidelity and often gets into fights at school, and Sam the Oddball Orphan, who has been bounced around from foster family to foster family before being bullied at camp.

She tells him dreamily, “I always wished I was an orphan. Most of my favorite characters are. I think your lives are more special.”

Her sweetheart pauses and narrows his eyes. “I love you, but you don’t know what you’re talking about.”

Because it’s not empathy when it’s all about you.  As Nigerian feminist Spectra wrote in her critique of American Mindy Budgor’s white savior complex gone wild: “This isn’t about people ‘staying where they are’ and disengaging from the world. This is about learning to engage with other cultures with some humility, or at least some bloody respect.” Indeed, there is no benefit to engaging in Oppression Olympics; i.e., to arguing that abused children have it worse than soldiers with PTSD, or that black women have it worse in the U.S. than gay men. But there is a benefit to acknowledging the differences between their experiences as well as the differences between mild, moderate and severe pain. The benefit is true understanding.

Shortly after an uproar over her rape comment, Kristen Stewart apologized for her crudeness. Acknowledging what we don’t know is an indispensable step in the path toward true understanding. The most deeply thoughtful, impressively modest people I know do this all the time. Their frequent deference in combination with their unwavering support proves that there’s a world of a difference between trying to put yourself in someone else’s shoes and assuming you’ve already worn them.

 
*As with all my posts, the identities of many of the people cited here have been altered to protect their privacy.

 

 

 

Are East Germans A Minority?

9 Nov

(Via)

 

I needed only head out my front door and walk to the end of my block to get to the Light Border commemorating that 25th anniversary of the fall of the Berlin Wall tonight. The price to pay for this was the waves of tourists that have been washing through the street all weekend. Parents trying to explain to it to their children have been constantly underfoot. Which makes you pause and wonder, How do you explain it?

The fall of the Wall is my very first memory of watching the news a child. It was bizarre to see so many people rejoicing that It is finally over!, when I had only just discovered that it had ever been there in the first place. In later years, I of course learned more – specifically, the American version of the story that asserts that Ronald Reagan brought down the Wall and America won the Cold War. The fact that so many Berliners were chanting, “Gorbi! Gorbi!” amidst the celebrations 25 years ago is conveniently left out of this narrative.

I moved from New York to Berlin 10 years ago, when the shine of Reunification had well worn off.  The former East Germany was known as the land of unemployment and racism, and the former West Germany was known as the land where little had changed and nobody cared about the East. The terms Jammer-Ossi (“Whiny Easterner”) and Besser-Wessi (“Uppity Westerner”) were well known.  Some East Germans began talking about what they missed about the old country: a much lower crime rate, better kindergartens, consumer products low in quantity but built to last. And, above all, no unemployment.

One of my earliest jobs in Berlin put in me in a room with five other coworkers. One of them hailed from Munich and, while reading the morning paper, regularly scoffed about East German nostalgia. “There’s nothing to be nostalgic about!” she huffed. “It was disgusting, just like the Third Reich!”

My other coworkers remained silent, but after her umpteenth outburst, a young man finally sighed, “It wasn’t the Third Reich. Yes, there was no freedom of speech or travel, but it was not about eugenics or mass genocide!”

The conversation quickly unraveled into uncomfortable silence. One of the women who had remained silent all along later approached me at the water cooler. “What did you think of that?”

“I thought she was maybe being a bit rude,” I shrugged.

“So rude! I just didn’t want to get into it. I fled East Germany to the West in the Seventies.”

My eyes widened.

“That’s a long story and I don’t want to get into it. But I can’t take her pig-headed opinions about it. She’s always going off about the dumb East Germans, but she doesn’t understand what those people went through!”

Indeed, few of us truly can. For the former East Germany to not only experience unemployment for the first time but massive unemployment—up to 25% in some places—is like a town where no one has ever been sick suddenly overrun with the flu. In the early 1990s, the very idea of writing resumes and performing job interviews struck many East Germans as crass: “You mean I have to keep telling people how awesome I am till they hire me?  That’s prostitution!”     

I have friends from the East who still feel pressured to abandon all hope of working anywhere near where they grew up, moving out of state in search of better futures in Frankfurt or Hamburg or Cologne. Many of their parents were white collar professionals shocked to find themselves unemployed after the Wall came down and have never been fully employed since. I also have friends from the West who moved to the East after Reunification and were ostracized in the workplace.

Tensions have eased a bit in the 10 years I’ve lived here, but Berlin is undoubtedly the place you’re most likely to see people who grew up on opposite sides of the Wall intermingling. The extent of prejudice between the two former nations became a legal issue last year when a woman sued a potential employer for discrimination. Interviewers at a company in south-western Germany had scrawled on her job application “Drawback: East German.” The court ruled against the plaintiff on the grounds that East Germans do not qualify as an ethnic minority.

Legal arguments aside, East Germans certainly have a different history with considerable impact upoon their culture. Girls and boys named “Mandy,” “Cindy,” “Jenny,” or “Kevin” are easily identifiable as coming from East Germany, where Hollywood movies in the 80s and 90s set a trend. A recent study revealed that such names invoke prejudice among school teachers who often assume such children will come from anti-intellectual home environments. East Germans over 30 pride themselves on being able to read Cyrillic, while their relationship to Russia is less affectionate. When the Soviet Forces occupied the East, they looked upon it as That Country That Invaded Us Twice In 20 Years. More Russians had been killed by Nazi Germany—the conservative estimate is 20 million—than anyone else. East Germans in turn saw the Soviets as That Army That Raped Over 1.4 Million Of Us. The two countries never became true friends.

But would it help to spread diversity awareness and promote tolerance between East and West Germans if the former were recognized as a minority? Or should we stick to seeing the Cold War and the Fall of the Wall as a struggle not of nations but of ideas? After all, it was democracy, not nationalism, that was the driving force behind the peaceful revolution that brought down the Wall. Yet democracy is frequently given little thought beyond its associations with that nebulous word “freedom.” As one East German friend pointed out, too many portrayals of Reunification focus a lot more on the freedom to buy a Porsche and choose between 16 different brands of toothpaste than the freedom from government surveillance, knee-jerk patriotism, voter suppression, and execution by the state. One of the quotes of the East German uprising most well-known over here—but rarely heard in the U.S.—came from protester Steffi Spira: “I want my grandchildren to grow up in a country where they do not have to salute the flag!” When the Nationalist Party and Neo-Nazi groups find substantial support in the East among the disaffected youth of today, their opponents frame it as a battle not against evil but for democracy.

Because nothing undermines dictatorship better than the idea that Everybody matters. It is the essence of both democracy and minority rights. And no developed nation knows as well as Germany how fragile this idea is.

 

 
 

The Easiest Way to Avoid Saying “He” or “She”

2 Nov

(Via)

 

A linguist will have a hard time if he tries to come up with the perfect gender neutral pronoun in English.

A linguist will have a hard time if he or she tries to come up with the perfect gender neutral pronoun in English.

A linguist will have a hard time if he/she tries to come up with the perfect gender neutral pronoun in English.

A linguist will have a hard time if s/he tries to come up with the perfect gender neutral pronoun in English.

A linguist will have a hard time if they try to come up with the perfect gender neutral pronoun in English.

A linguist will have a hard time if zhe tries to come up with the perfect gender neutral pronoun in English.

A linguist will have a hard time if zie tries to come up with the perfect gender neutral pronoun in English.

Depending upon your political leanings, you may find one or more of the sentences above ridiculous. Many people find the very idea of gender neutral pronouns preposterous to the point of sending death threats to those who have dared to formally enter them in style guides. In the middle of the last century, Strunk and White dismissed any linguistic adaptations motivated by gender equality because, they argued, the word “he” becomes gender neutral, not androcentric, when referring to everyman, mankind, etc. This argument has failed to hold up since the women’s movement, and most Western periodicals agree that such language is archaic with male chauvinist undertones, hence the plethora of proposed alternatives.

This can get harder in other languages. In German, everyone knows right away if your best friend is a girl or a guy because you have to call a female your “best friendess.” A troll gives away her gender in Russian or French the moment she types, “I’m smart/rich/European.” A Japanese speaker would give it away at the word “I.”

But wherever there are strict rules about gender, there is deep confusion about gender. A “girl” in German (“Mädchen,” from which we get “maiden”) is technically gender neutral because all words ending in –chen are. Thus, German kids grow up on stories like Snow White and Little Red Riding Hood containing lines such as, “The prince took the maiden home to his castle and married it.” English isn’t any more logical when considering that almost all of our modern caricatures of ducks—ducklings, rubber duckies, Donald, Daffy, and Duckula—are automatically associated with boyishness, yet the word “duck” is technically as female as the word “cow.”

Most people on earth speak a language that distinguishes between “he” and “she” because most of the languages of the former colonial powers do. But a study of several hundred of the 6,000+ languages on earth found most do not. Whether you’re speaking Finnish or Farsi, you can talk about your best friend, your teacher, your doctor or your least favorite coworker for hours without letting anyone know anything about the person’s gender identity. No “his” and “hers” bath towels, no needing to find out your baby’s sex for linguistic ease.

So while The New York Times Manual of Style and Usage now urges its writers to avoid gendered pronouns, it appears the best solution would be to avoid English altogether.

 

 

Could FDR Be Elected Today?

26 Oct

(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’ 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 the one above 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.

 

 

Ghost + Dwarf = Double The Horror

12 Oct

(Via)

 

If ghosts are scary, and dwarfs are creepy, then ghost dwarfs must be an even better bet for thrill-seekers, right?

This seems to be the logic behind the DREAMLAND haunted house in Cambodia, where customers pay to be terrified by extraordinary-looking people like 30 year-old Horm Sivon, who is pictured above. She is one of ten dwarfs employed at the house alongside other disabled people.

The owner, Hien Rensei, defends his business as one of the few opportunities disabled people in Cambodia have for employment. “Some people may consider it immoral, especially in western countries. But in Cambodia we have the situation that people with disabilities just don’t get hired,” he told The Phnom Penh Post. He spoke of his own experience with discrimination as a Cambodian living and traveling in Japan, the U.K. and Germany. “For two years I couldn’t find a job because I didn’t speak the language and at airports my passport was checked much longer than the ones of my Japanese friends.”

Emilie Arfeuil, the photographer who captured Horm, denounces this industry as “a terrible step backwards in terms of human rights, a degrading exploitation of people’s disabilities.” She has entered the photo in National Geographic’s Photo of the Year contest.

If she wins, will the proceeds go toward furthering employment opportunities for disabled people in Asia?

 

 

White Woman Sues Spermbank for Accidentally Giving Her Black Donor’s Sperm

5 Oct

(Image by Max Shuster via)

 

Man, we can’t go two months without some couple making headlines over a baby they didn’t plan for. An Ohio woman named Jennifer Cramblett is suing a spermbank for impregnating her with the contents of a vial different from the one she selected. The mix-up resulted when a clerk misread Vial 330 as “380.” Her lawsuit reads:

On August 21, 2012, Jennifer gave birth to Payton, a beautiful, obviously mixed race, baby girl. Jennifer bonded with Payton easily, and she and [her partner] Amanda love her very much. Even so, Jennifer lives each day with fears, anxieties and uncertainty about her future and Payton’s future. Jennifer admits that she was raised around stereotypical attitudes about people other than those in her all-white environment. Family members, one uncle in particular, speaks openly and derisively about persons of color. She did not know African Americans until her college days at the University of Akron.

Because of this background and upbringing, Jennifer acknowledges her limited cultural competency relative to African Americans, and steep learning curve, particularly in small, homogeneous, Uniontown, which she regards as too racially intolerant.

As just one example, getting a young daughter’s hair cut is not particularly stressful for most mothers, but to Jennifer it is not a routine matter, because Payton has hair typical of an African American girl. To get a decent cut, Jennifer must travel to a black neighborhood, far from where she lives, where she is obviously different in appearance, and not overtly welcome.

One of Jennifer’s biggest fears is the life experiences Payton will undergo, not only in her all-white community, but in her all-white, and often unconsciously insensitive, family. Despite her family’s attempts to accept her homosexuality, they have not been capable of truly embracing Jennifer for who she is. They do not converse with her about her gender preference, and encourage her not to “look different,” signaling their disapproval of her lesbianism.

Though compelled to repress her individuality amongst family members, Payton’s differences are irrepressible, and Jennifer does not want Payton to feel stigmatized or unrecognized due simply to the circumstances of her birth. Jennifer’s stress and anxiety intensify when she envisions Payton entering an all-white school. Ironically, Jennifer and Amanda moved to Uniontown from racially diverse Akron, because the schools were better and to be closer to family. Jennifer is well aware of the child psychology research and literature correlating intolerance and racism with reduced academic and psychological well-being of biracial children.

Family planning is so endlessly complicated that any law-abiding individual seeking privacy deserves it. But Cramblett is going public with her pursuit of compensation for emotional distress and therein invites judgment. John Culhane writes at Slate that this sort of blunder is bound to happen in the free market of assisted reproductive technology. Julie Bindel at The Guardian warns of a creeping let’s-get-a-designer-baby approach to parenting among those using IVF. “Just remember,” she writes. “If the child you end up with does not exactly fit your ideal requirements, you can’t give it back – and nor should you even suggest that something bad has happened to you.”

Do parents have the right to be guaranteed certain kinds of children? Those pursuing parenthood via sperm donors, egg donors, or adoption have much more freedom to decide against certain kinds of children than those using nothing but their own biology. The application for becoming an egg donor in New York contains over one hundred invasive questions about family and medical history, as well as education, favorite sports, artistic talents and “additional characteristics” such as “cleft chin, full lips, big eyes, or high cheekbones.” Applicants are required to submit three photos “that shows [sic] your face and/or body type clearly.”

I understand why such questions are asked. Many if not most parents already know such things about those involved in producing their child, so why shouldn’t the IVF parents be allowed to know? If my partner and I were to join their ranks, what sort of donor profile would seem most appealing to us? Deciding upon something inherently entails deciding against something else. Nevertheless, it is hard not to see this tick-the-box approach to baby-making as eugenic. How many parents would accept my eggs, with their 50% chance of passing on achondroplasia? How many would sue if someone accidentally got them without asking for them?

Parents seeking to adopt children here in Germany are asked what kind of children they would and would not like to have before they look at profiles. For example, do you mind if your children look extremely different from you? What about physical disabilities? Mental disabilities? Drug addiction? In an interview with a family whose two children were adopted, I was told that the agencies encourage prospective parents to be utterly frank about their fears and prejudices – that an insistence along the lines of, “We can handle anything!” will sound suspiciously naïve.

Such brutal honesty strikes me as reassuringly well-informed, perhaps the result of infamously ideological parents like Josephine Baker or Jim Jones, who flaunted their rainbow families at the expense of the children’s individuality. Reading Cramblett’s descriptions of her relatives’ hurtful reactions to her sexuality, I can sympathize with the feeling that battling one kind of bigotry can be hard enough. Everyone deserves to live free from the unnecessary pain of bigotry. But if we’re going to be suing someone, wouldn’t it be more logical to file complaints against those who make her daughter feel stigmatized and unrecognized? Surely they’re the ones causing “emotional distress.”

While the spermbank does appear to have erred out of negligence and may be at fault, would awarding Cramblett for “emotional distress” not set a precedent and open the door for endless lawsuits over the births of minority children parents did not explicitly wish for? My parents had a 1 in 40,000 chance of producing a child with achondroplasia, as does anyone reading this. (That is, unless you already have achondroplasia.) Should doctors warn every prospective parent of those odds? Should they warn us of the chance for racial atavism? If homosexuality proves to be genetically determined, will parents have a right to sue doctors who fail to remind them of the risk? The very idea of being financially “compensated” for emotional distress is often silly to those of us who know from firsthand experience how vastly unreliable life can be.

Legal decisions aside, my primary hope is that Cramblett and her partner will explain the lawsuit to her daughter in a way that does not cause her to feel any more conflicted about her extraordinary appearance than her relatives’ racist views already do.

 

 

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

28 Sep

(Image by Matt Bryans 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, Tammy Duckworth. 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 spatisicity 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.

 

 

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