Tag Archives: society

Who’s Your Family?

27 Nov

Lady with Punk Grandson II(Image by Christ_i_ane used under CC 2.o via)

From the Archives

 “We don’t have to like each other, Jo. We’re family.”

— Holly Hunter in Home for the Holidays

Whenever you set out to talk about minority rights, you end up crashing into the issue of identity. And this invariably swerves, again and again, into the issue of family. The poet Sharon Olds once said, “A family is a mystery,” and this is probably why I can’t get enough of it in novels, film, clinical trials, and yes, even in real life. Show me someone fascinating and I can’t wait to meet their parents.

In and outside of the holiday season, twenty- and thirtysomethings so often love to extoll the importance of friends over relatives, echoing Oscar Wilde: “Friends are God’s apology for family.” Our first true friendships usually begin in adolescence—the time when we start wanting to forge our identities independently from our families—and this sets the standard whereby friends are seen as a respite from all of our obligations: from parents and siblings, from school, from work, from the exhaustion of the holidays spent with the relatives. “My family drives me nuts, my friends get me,” pop culture says. “Sure I love my family, but I actually like my friends.”

And yet, friendships ultimately prove to be fleeting with age, as life partners and earning money and having children begin to take priority. A study at Oxford University found that taking on a romantic partner generally pushes two close friends out of your life. A serious boyfriend or girlfriend is, after all, a super-close friend and there are only so many hours in the day to fit people in. It seems entirely reasonable to conclude that the addition of in-laws and children require us to quietly toss a few more buddies overboard. Or at least scratch them off the gift list.

Few of us like to face the harsh truth that the number one facilitator of friendship is convenience. How many people have we doused in superlative praise, spilled our hearts to, bragged with about our never-ending awesomeness, only to eventually lose touch because we live too far away, we’ve changed our habits since that new job/baby/boyfriend, we haven’t spoken in so long and wouldn’t know what to say? Sure, we’ll fling them a Facebook birthday greeting, but composing an entire email would require so much apologizing for having taken this long to write…

Maintaining a friendship requires effort, as author Julie Klam said in an interview with Linda Holmes on NPR two years ago:

She realized, too, that it wasn’t an area that was being written about very much in a way that spoke to her experiences. She found a lot of clichés, but not a lot of insight. “Everything that I had read about friendships was always … platitudes about, you know, ‘friends are like flowers and you have to water them’ or whatever. Or the T-shirts with the koala bear and the flower and the ‘Friends are…’.”

So… Why is there so much writing about so many aspects of our lives — love, sex, money, family, careers — and so little about the inner workings of friendships that are so central to so many people’s lives? Maybe, Klam theorizes, it’s because friendships seem disposable and interchangeable when you look at them like an efficiency expert. “There’s some sort of thing about, like, ‘Well, if you don’t like the friend, just don’t be friends with them.’ Rather than the idea of working things out.” Working things out, as you know if you read other kinds of relationship books, is the usual ideal outcome, rather than bolting when trouble strikes.

… And of course, that’s what makes keeping up with your friends complicated. When I ask her what she considers the big challenge of adult friendships, she emphasizes that it’s legitimately hard to make time for them, because they’re not, you know, mandatory. And the older you get, the more things in your life are mandatory.

Perhaps this is why there is such a paucity of stories about friendship in books and film. A friendship can be destroyed without any drama. All the characters have to do is lose touch.

And that can be fine. Many friendships are simply not worth laboring over. Time changes every one of us and there is little point in forcing ourselves to pretend to be someone we are not simply for the sake of sustaining the appearance of something that no longer serves us. Scores of people can be your perfect match in a single context: that course you took together, that team you both played on, that year you roomed together when a deep heart-to-heart required nothing more than walking down the hall and flopping onto the bed with a beer. (Or maybe there was more convenience in those years before you roomed together and had no idea how much/little time/money s/he spends on cleaning/personal hygiene/video games.)

A friendship is significant if it can survive all the changes and challenges life will inevitably throw at it. But the same goes for family, to the extent that I believe there is really no difference between the two. As Andrew Solomon wrote in what I still consider the Best Book of the 21st Century, “Love becomes more acute when it requires exertion.” The exertion can be exquisite.

Family can be fun to be with, but what they offer with far more consistency is purpose. This is why studies find that parents are often happier watching television than spending time with their children, but it’s their children—not television—that inspire them to endure when they are faced with pain or hardship.

Many traditional beliefs about family are not helpful. If you’ve explored this blog at all, you know I believe bloodlines are dangerously overrated. I also believe it can be damaging to expound upon the virtues of lifelong commitment and forgiveness without exception. While many people abandon others all too easily because they are more concerned with their own comfort than anyone else’s, just as many people remain in emotionally abusive relationships because their generosity trumps their self-care. I have sadly witnessed enough toxic relationships to know that some ties are better off severed.

This is why I define family not by genetics, but as the people you are so close to that they regularly drive you crazy – while still being worth the grief. They are the people who know you so well that it embarrasses you to think about. They can simultaneously be uncles, cousins, godmothers, half-brothers, former coworkers or classmates. But no matter their origin, once it’s clear to me that I will always stick by someone no matter how vexing they can be, they are family to me.

Because if novels and films and social psychology tell us anything, it’s that you can’t get truly close to another human being without being annoyed by them.

 

Originally published December 2014

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Does Pride In Being Different Lead to Narcissism?

11 May

Being different(Image by Niccolò Caranti used under CC 2.0 via)

 

Long before there was Buzzfeed, there were online personality quizzes. (Back in the Analog Age, they featured in teen magazines like Sassy and YM.) Today they’re the rabbits of the Internet, every new one that pops up signifying ten more in gestation. “Which Mad Men Character Are You?” “Which Star Wars Character Are You?” “What City Are You?” Leading columnist Emma Roller to wisely observe, “No one cares.”

Just for once, I’d love to see a quiz-taker being told: You’re Werda, Germany! Or You’re Selden, New York: You’ve got some nice areas and some sketchy areas, and a lot of perfectly fine but nondescript highways and sidestreets. A famous person passed through once, though that was ages ago. Some people like you, some people don’t. Most people haven’t heard of you except the couple thousand people who live there, plus the people who visit them or send them mail.

Or how about a quiz that announces, You’re one of the soldiers in Star Wars who gets killed in the first three minutes. Without you, and a bunch of other characters like you, there would be no shoot-out scene, and without the shoot-out scene, the audience wouldn’t know soon enough that they should fear the Empire. You are certainly useful—that’s why the actor who played you got paid after all—but no one will be looking for your name in the credits.

If such a result on a personality quiz sounds unthinkably cruel, then maybe we really do have a narcissism epidemic on our hands. Narcissism, after all, is the tendency to put your own needs ahead of others’ because, deep down inside, you believe you are more deserving of praise and sympathy. Because you’re different and special. (“Maybe there are a lot of Werdas and Seldens out there, but not me!”)

Every single one of us needs to feel special to someone, but the severity of this need can determine the difference between being self-confident and being self-involved. And when minorities embrace our exceptionality and take pride in being special, are we part of the problem?

It is easy to understand why minorities celebrate diversity with pride parades and slogans. Anyone who has been beaten up, harassed, or excluded for qualities they have no control over is understandably in need of a salve, whether that means spilling their hearts out in group therapy or singing along with the Columbus Gay Men’s Chorus, “I am beautiful, no matter what they say.” When I mentioned to my mother that I’d been asked at school at least ten times in one month, “Why is your head so big?” she replied, “Just tell them you have an extra package of brains, honey!”

It was a sweet, wonderful piece of advice. With one hitch. My ten year-old self took her explanation literally, thrilled by the news that dwarfs are neurologically advantaged! And even when I later found out that she meant it figuratively, I continued to believe for a period that I was truly smarter than any ignoramus who had questions about my body. Society does have many hang-ups about difference that fuel rude questions and comments, and this is indisputably problematic. But it is also problematic to counteract these hang-ups with the conviction that your difference makes you essentially better than everyday people.

It is no coincidence that the minority rights movements of the 1970s and 80s peaked right before the height of the self-esteem movement. With self-determination seen as the key to obliterating prejudice and fear of the Other, millions of children in my generation grew up chanting, “I’m special!”  I remember singing along with Piglet and Tigger:

If everybody were like everybody else,

How boring it would be.

The things that make me different,

Are the things that make me, Me!

Stand tall.

You’re in a class by yourself.

Be proud.

You’re not like anyone else.

No doubt about it.

You’re second to none,

’Cause you’re the one and only,

Genuine, original,

You’re the one and only one!

This approach was very well-intentioned, but half-baked.  Everyone is special insofar as everyone is unique. But we so often use “special” interchangeably with “extraordinary,” as in: not merely unique, but better than the rest. It is statistically impossible for everyone to be second to none. We can simultaneously be unique and ordinary, yet it’s a fact that is hard for us to wrap our heads around and even harder for our egos to accept. It is unsurprising that raising a generation of individuals to celebrate their exceptional qualities has unleashed millions of adults who are now struggling to deal with the countless moments in which they are reminded that they are not all that different from anyone else. And who wince at the thought of being called “average.”

This doesn’t have to yield narcissism, but it can. Narcissism causes people to repeatedly bring up their differences not in order to feel comfortable with them, but in order to prove their exceptionality. It causes them to talk more than they listen, to abandon relationships after the initial shine wears off, to justify hurting their partner or bailing out on their families. Narcissism causes non-famous people to pity themselves as underappreciated, undiscovered geniuses lost in a sea of lowly idiots, and it causes famous people to fanatically envy those who are more famous. Narcissism can cause someone to not merely believe in changing the law in the pursuit of justice but to see herself as being above the law. And while it may help her keep her head held high when someone criticizes her unfairly, narcissism leaves her bitter and spiteful when the criticism is on the mark. 

And where there is narcissism, there is the savior complex – the desire to help people not because you would want someone to do the same for you in the same situation, but because you recognize an opportunity to be seen as special. This attitude betrays a very bleak view of minorities and those in need – the self-appointed savior believes they should be grateful to him because he is exceptionally open-minded, unlike normal people, who would be repulsed by them.

This is why the minority rights movement is inherently opposed to narcissism. Narcissism upholds hierarchies and depletes empathy, and there can be no human rights without empathy.

In fact, being seen as ordinary is the ultimate goal of any minority rights movement. After counteracting fear and hatred with enough celebration of diversity to preserve everyone’s well-being, most minorities hope to one day garner about as much recognition as left-handed people. In the West today, no one tries to nervously change the subject or get ready for attacks when someone brings up their left-handedness, nor do they gush about how great it is to know someone so different! The idea of putting left-handed people on display in a theme park is unthinkable. Not only would that be spectacularly inhumane, but who on earth would go? Left-handedness is interesting, but it’s not that interesting.

Narcissism fosters an addiction to the idea of being recognized as interesting. Encouraging a wallflower ostracized for her looks to question mainstream beauty standards can help boost her self-satisfaction and all-around happiness.  Encouraging her to disregard anyone who doesn’t explicitly praise how she looks can trigger anti-social behavior. So how do we avoid this?

Superb articles at Slate and The New York Times have been exploring better methods for teaching children modesty and emotional intelligence, while recent novels like this and articles like this have been making self-proclaimed progressives examine our sometimes monstrously selfish habits. And how did I come to stop thinking that my dwarfism made me superior?

A few months after our discussion about my exceptionally sized skull, I was bragging to my mother about being the only kid at my elementary school with dwarfism. Although I don’t remember exactly what I was bragging about, I vividly remember my mother’s concerned look before she said, “I hope you don’t think you’re special.”

W-w-hat? Wait, I’m not special? Her words stuck with me like a stone in my shoe, as most good pieces of advice are wont to do.

My parents are the most supportive people any child could wish for. They also called me out whenever they sensed I was taking up too much space.   

My dad beamed upon hearing that I had passed all of my exams after having struggled to find time to study during a year of two surgeries and lots of physical therapy. But he laughed in my face the next summer when I tried to boast about working TWENTY hours a week.

At the end of one of my limb-lengthening procedures, when six metal rods were unscrewed from my thigh bone without local anesthesia, I screamed until I couldn’t hear myself anymore because the femur is the biggest bone in the body and the pain matched its size. The last coherent thing I remember shrieking was directed at my surgeon: “I HATE YOU!” My mom later told me he apologized to me with every turn of the screw, but I was too hysterical to notice. What I do remember is lying on the table with no one left in the room but my mother and her friend who had come along to help, my eyes stinging with the salt of the tears, hyperventilating and moaning until the friend interrupted me: “Emily, stop it! You’ve cried enough. It hurt, you were upset, but now IT’S OVER.”

That’s what friends are for. To be proud of your achievements, sympathetic to your pain, and to also tell you when you’re being ridiculous.

 

 

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When Food Preferences Surpass Politesse

24 Nov

yuck(Image by Boris Drenec used under Creative Commons license via)

 

Perhaps not quite in the spirit of Thanksgiving, I’m about to alienate half the people I know: I don’t have much patience for openly picky eaters over the age of 20. The covert ones don’t bother me at all. But announcing to your host that you simply won’t eat mushrooms or mustard or millet is to revert to your 10 year-old self, brazenly acting on the assumption that anyone cooking for you will find your pig-headedness as endearing as your parent or guardian apparently did. I don’t particularly like pears or peas or plenty of other things, but if I learned anything from my time as an exchange student with the American Field Service, it’s that intellectually curious, culturally respectful, fully-grown adults eat whatever is set in front of them. Or at least try a few bites and then leave it to the side without advertising their distaste.

Unless, of course, it threatens their health. I recently hosted a friend who has celiac disease and who apologized several times in advance for the inconvenience. While the sincerity of his remorse was indeed helpful because it was convincing, I assured him there was no need for shame. I’ve had friends with juvenile diabetes and colitis and who need to be fed through tubes. At my wedding, where guests had been requested to bring cakes instead of presents, I chased down every single baker in order to mark any desserts containing traces of peanuts, oranges, or coconut. I never mind offering vegetarian options because they accommodate a wide array of dietary restrictions with both cultural and medical bases, just as alcohol-free beverages are helpful to kids, recovering alcoholics, devout Muslims, and pregnant women alike. But my tolerance generally ends there. Because beyond that boundary seems to be where stubborn intolerance for all sorts of food spreads like the plague.

According to the cover story of Die Zeit this week, less than 1% of Americans are gluten intolerant, yet 28% of Americans purchased gluten-free products last year. The percentage of Germans who purchase lactose-free products has tripled in just five years. Such sky-rocketing numbers sound much more like successful marketing trends than biological shifts in the population. Inordinate media attention to rare medical issues always inspires swathes of people to self-diagnose rather than check with their doctor. In response to what sometimes does seem like an epidemic of hypochondria, a kindergarten in Hamburg has recently taken to demanding medical documentation for any alleged food restrictions among its students. Die Zeit writes that parents were insisting their untested children had food allergies after the appearance of the slightest yucky face. Of course a child at risk for anaphylactic shock is better safe than sorry, but to teach a child to regularly cry wolf is to teach them to rely on their most narrow-minded instincts.

This is not a call to villainize health advocates or burn certain cookbooks. On the contrary, the greatest thing about the human culinary tradition is its diversity. When I grew up in the Eighties on Long Island, skim and lite and sugar-free products were in fashion,  but anything organic or “foreign” or “ethnic” was scarce because what’s wrong with some good old American spray-on cheese? Sushi was gross (“It’s raw fish, you know!”), vegetarian dishes were for pansies, and escargot was what made the French so weird in the first place. (See this Indiana Jones clip.) Kids today are growing up more environmentally conscientious and more open to exploring new cultures, and I am glad to see the American tradition of grimacing at all the icky cuisine of the savages and the smelly Europeans go the way of the Twinkie. But there’s no progress in simply switching the grimace from the sight of imported cuisine to the sight of anything that isn’t in line with the latest imported health fad.

While it seems many finicky eaters think their aversion to certain foods resembles a disability (“Please don’t criticize me for something I can’t do!”), it often resembles ableism (“I refuse to budge on this issue!”). We cannot be open-minded and at the same time refuse to leave our comfort zone. As the Food Commander writes in his excellent Huffington Post article, “Unless you suffer from a disease or real (unlike imagined) food allergies, … kindly embrace the fact that your body is not all that fragile. Humans survive every day in conditions way worse than, say, a four-course dinner in an Upper East Side townhouse.”

Outside of a meal, it can be fun to explore cultural differences and personal preferences: why so many Chinese love meat but dislike butter, or why German senior citizens detest turnips. It’s also amusing to try to argue the illogic of taste. (One such argument culminated in one of my relatives bellowing, “I am not a fan of the bean!”) It is also imperative that we eventually discover which food restrictions have been caused by environmental changes and which have been encouraged by marketing trends. But the fun comes to a screeching halt when these discussions ooze onto the dinner table.

Such candidness often has innocent origins. In these rather unrepressed times, where dinner guests discuss everything from politics to polyamory, why not share our honest opinion of what’s on our plates? This approach, however, ignores two very important facts. Firstly, unlike in a restaurant or your own home, the meal laid out for you has been paid for by someone else. Secondly, unlike the selection of films or games or whatever else it is you don’t like about the home you’re in, the meal laid out for you is the result of someone else’s time and effort. To go so far as to scrutinize it (“Is it organic?”) or disparage it (“It’s too bad it has olives in it!”) is to spit on the dinner invitation that was extended to you out of sheer generosity.

I know what it’s like not being able to participate in communal activities. This blog is all about those who have no choice about being an exception to the rule. Those who have bona fide difficulties digesting certain foods—perhaps akin to my difficulty walking long stretches—should not feel ashamed. But shame should not be supplanted with complacency, either. As my friend with celiac disease said, it is usually regrettable to have to limit one’s range of experience, and it is always regrettable when it involves rejecting an offer of kindness.

Indeed, my proudest moment during my bout of stenosis last year was pulling off a Thanksgiving dinner with my partner that fed 17 people while I was still recovering from spinal surgery. If any of this year’s guests cannot stomach something, they will hopefully follow the example of my more gracious friends who keep things discreet, at least at the table. I don’t subject them to judgment by examining their plates for leftovers and threatening to deny them dessert because they spare me the insult of telling me exactly how my offering failed to satisfy them.

They also resist the temptation to dive into an unsolicited monologue of healthier-than-thou moralizing, a tendency that accompanies food more than any other health issue. I’m usually the last to squirm at medical stories, but I’ve been thinking lately that if I have to hear about the details of the latest nutritional research every time I put a spoon to my mouth, maybe I should start lecturing about my back problems every time I see someone wearing heels or sitting at a computer.

Eating is a necessity and a health issue and an environmental issue and a cultural tradition. I love learning from friends and researchers about the different ways we all eat, and the socio-political forces of the food industries are absolutely fascinating. But I won’t ever admire someone merely for eating homemade bread or fine delicacies or simple fare or whatever it is that the Paleo diet currently dictates. Those I do admire cook joyfully in their own homes and, when invited to someone else’s home, plunge their hands obligingly into whatever their host has set out for them, whether it’s okra or Oreos. As minority rights activist Andrew Solomon has pointed out, a truly tolerant culture celebrates additive social models, not subtractive ones.

Or, more simply, I will always care a lot more about your table manners than your diet.

 

 

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Is Dwarfism A Disability?

27 Oct

(Image by Ron Riccio used under Creative Commons license via)

 

A more sober ending to Dwarfism Awareness Month…

I remember being around 10 years-old when I began taking care to never refer to my dwarfism as an “illness” or a “disease.” An illness is something that tries to destroy you. It demands you go into battle. Even if you end up grateful for its having made you stronger, you’re glad when it’s gone. My dwarfism has always been around and I’ve never tried to conquer it. It’s a condition, a word as neutral as it is fitting. But is it a disability?

Many in the dwarf community insist that it is not. The thinking goes that being extraordinarily short is no more serious than being left-handed. We don’t think of left-handedness as a disability. It’s merely a difference, one of many physical features that can shape someone’s identity, like hazel eyes or an outie belly button. Being left-handed is only an inconvenience insofar as the world is built for those who are right-handed, and populated by some who still cultivate fear and hatred of those who don’t conform to the majority. Needing left-handed scissors and mouse buttons is not really thought to be an issue of disabled access – it’s more akin to needing glasses or extra-moisturizing shampoo. Diversity awareness over the last 50 years has led the vast majority of Westerners to shrug at the idea of left-handedness.

And such a neutral shrug is what dwarf activists seem to be coveting when they insist that dwarfism is not a disability. In the words of Andrew Solomon, “Neutrality, which appears to lie halfway between shame and rejoicing, is in fact the endgame, reached only when activism becomes unnecessary.” But is dwarfism only an inconvenience insofar as the world is built for those who are taller? It’s a compelling thought experiment, but it ignores all the medical complications I’ve had to deal with. And it raises the question: What is dwarfism?

The official definition, which lumps hundreds of skeletal dysplasias and growth hormone deficiencies into one category, is in fact only concerned with height. Little People of America defines a dwarf as anyone who stands fully grown below 4’10” (1.47 m). But height is relative. Women in Indonesia and Guatemala are 4’10” on average, which means that the LPA definition is based on a certain culture, and cultures are always changing as we move through time and around the world. As a pre-teen, I always got a kick out of seeing my towering parents become the minority at LPA meetings, while as an adult, I got a kick out of seeing my German-Swedish partner tower over my parents.

Physically, Warwick Davis and Peter Dinklage have no more in common than a black-haired Korean does with a black-haired Irishman. But they share many experiences rooted in society’s reaction to their short stature. They were both cast as dwarfs in the second Chronicles of Narnia film because the fantasy tradition cares first and foremost about looks, making up its convoluted ideas about heritage and separate races as it goes along. Most forms of dwarfism are caused by genetic mutations, but others result from chromosomal abnormalities, malnutrition, or even child abuse. Thus, because it encompasses all sorts of conditions with a tremendous variety of causes and complications, dwarfism is a social construct. Can a social construct be a disability? What is a disability?

This blog recognizes disability as a medical condition that causes you to experience more pain and/or limitations than the average person in your peer group, and therein attracts inordinate attention from society. And the attention has traditionally been negative. Disabled people carry a burden most other minorities do not in that we must argue that our lives and identities are no less valuable than anyone else’s, while at the same time admitting that we will always experience a good deal of pain no matter how accepting or accommodating society is. (Poor people are the only other minority that shares this burden.) This idea of inherent pain is what causes many activists in the autistic community and the transgender community to buck the disabled classification.

But when pain is indisputably inherent to a condition, it is frequently relativized in the hopes that this will reduce ableist attitudes. When I was born, the doctor pointed out to my parents that “everyone has something different about their bodies. One person has bad knees, another has a chronic skin rash. Emily’s difference is just a lot more noticeable than other people’s.” But does this mean that bad knees and skin rashes and seasonal allergies are all disabilities? There’s more to it than that.

If a medical condition is only minimally limiting and can be treated with standard procedures, we don’t really consider it a disability and rightfully so. While there is value in relativizing everyone’s struggles in order to calm our fears of the Other, it carries the risk of our failing to recognize differences that have much to teach us. The regular migraines I inherited from my mother don’t make me disabled. The pain can be intense and it’s infuriatingly inconvenient to feel one coming on at a dinner party while also feeling the hollow echo of an empty pill box in my bag. But the migraines are treatable—and not exorbitantly expensive to treat—and easily understood by others because plenty of people get them. Having to explain to people what my back and joints can and cannot endure is a more complex task.  Alleviating or avoiding the pain is even harder.

I interviewed friends and acquaintances with achondroplasia about the physical difficulties they regularly face. Some described always needing to lie down for at least half an hour whenever they vacuum for 10 minutes or more, and needing to get up earlier than everyone else on weekdays in order to afford themselves more time for walking to work or class. Everyone has trouble finding comfortable shoes that fit—women’s business shoes and sandals pose the biggest challenge—and many need to wear orthotics. Camilla, a college student who has not undergone limb-lengthening, told me:

I definitely believe I feel fatigue more easily than people my age. I went out dancing with friends last night and I had to stop and just stand for a while because my legs were starting to hurt. Also, when I walk places with my average height friends, my joints start to hurt while they feel almost no effects of fatigue at all… I would say that the hardest physical aspect of having dwarfism would not be the height difference but the extreme muscle and joint pain that seems to be more and more easily triggered as I get older.

And by “older” she means approaching her mid-twenties. These physical limitations would sound less surprising coming from senior citizens, which is why, as an advisor explained to me, your eligibility for disability status decreases as you age and aching joints become more common to your peer group.

A friend who had limb-lengthening at the same time I did told me, “I know if I’ve been on my feet all day, my ankles get really stiff and I’m limping around at home at the end of the night… as compared to my friends who work all day and still manage to hit yoga class, the gym, or cycling class afterwards.” Those of us who have undergone limb-lengthening can test whether achondroplasia is a disability because we control for the socially-constructed advantages of height. Yet in my interviews, I noticed that many who have had limb-lengthening are often reticent to talk about their current physical hardships lest someone conclude that all that time spent breaking and healing and growing bones was for naught.

Indeed, pride complicates our perceptions of pain. While hypochondriacs rejoice when they qualify as “disabled,” those who have regularly been reminded by peers and institutions of the supposedly pitiful nature of their condition are often less willing to revel in it. Those who reject the idea of calling dwarfism a disability are often motivated by the desire to de-stigmatize dwarfism. I of course understand this desire, but I don’t see how we can make the argument without stigmatizing disability. And I am suspicious of any mindset that supports a hierarchy by essentially saying, “At least I’m not like them.”

Like people of color, people with dwarfism are united only by society’s reaction to them, not by any medical traits. This is why I do not believe dwarfism itself is a disability. However, most types of dwarfism are. The way in which the physical pain brought on by achondroplasia intersects with social limitations is explained very well by Spoon Theory, an idea invented by Christine Miserandino, who has lupus. It bears repeating that I can only begin to imagine what living with lupus is like.  In the presence of someone needing to vent about the pain, I hope to be as wonderfully deferential as so many non-disabled friends have been to me. But the fact that lupus is an illness while achondroplasia is a not is no reason to ignore the fact that Spoon Theory perfectly illustrates the broader concept of chronic pain and fatigue experienced by people with all kinds of disabilities. Emily Brand described it eloquently in The Guardian last year:

The basic idea is that you have a limited number of spoons available for the day and each action will cost a given number of them – the more demanding the task, the more spoons would be required. The phrase “running low on spoons” can be a useful way of communicating the need for rest to fellow “spoonies” who also use this system and to friends and family who are in the know. Reading up on this is one of the best things anyone could do to help with providing day-to-day support to someone with a chronic health condition, as it’s a powerful analogy that can help people to empathise with how much of an impact even an invisible symptom like chronic pain can make.

I love the idea of “running low on spoons.” I used it just last week in explaining to a friend that I couldn’t peer with her into a store window because my swollen feet were begging me to keep off the cobblestones. But at the risk of sounding, well, confused, I’m not entirely comfortable calling myself a “spoonie” because experiences in college have left me averse to glamorizing conditions with labels that sound like club memberships. And between dwarf and has dwarfism and midget and little person and LP and short-statured and disabled and physically challenged and differently-abled, I’ve got enough labels to sort through.

 

 

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What’s Privilege?

7 Oct

(Via)

 

This week I led a workshop about teaching pre-school children about diversity.  I started by asking the teachers what privilege is, and I got the same answer a family member had given just days before: “Privilege is what people who are really lucky have.  Like being born into a rich family, going to nice schools, or even just being exceptionally good-looking and therefore having an easier time of it.”

It is interesting that so many seem to be under the impression that privilege and luck are what extremely well-off people have.  Privilege does belong to anyone whose place in society is considered “better than normal,” but also to anyone whose place is considered simply “normal.”  As said before, privilege is granted by society to certain people based on things we had absolutely nothing to do with: our gender identity, our ethnicity, our sexuality, our physical traits, our mental capabilities, our class background.  That is why any privilege—like any form of disenfranchisement—is unjust.     

In the workshop, I read off the following list of statements that illustrate privilege to the participants who were lined up in a row.  (It’s a hodge-podge of original statements and ones taken from privilege activities created by Peggy McIntosh, Earlham College, and the Head Start Program.)  Anyone for whom the statement was true could step forward.  Anyone else had to stay behind.  All of us in the group stepped forward at least half the time.  You can see for yourself where you would have ended up: 

 1)      I always felt safe in my neighborhood as a child.

2)      If I wish to, I can be with people of my race/ethnicity most of the time.

3)      I never have to plan how to reveal my sexual orientation or gender identity to friends, family, or colleagues.  It’s assumed.

4)      I can go out in public without being stared at.

5)      I participated in extracurricular activities as a child (swimming, football, ballet, piano, yoga, painting, etc.).

6)      I can easily buy posters, picture books, dolls, toys and greeting cards featuring people of my race.

7)      I can wear a skirt, a dress, jeans, or pants, without anyone staring or asking me to explain my choice.

8)      In school, I could always take part in whatever activity or games the class was assigned.

9)      None of my close friends or family has ever been arrested.

10)  Rarely have I been asked to explain why my body looks the way it does or why I move or speak the way I do.

11)  I have never worried that I might not be able to afford food.

12)  When I learned about “civilization” in school, I was shown that people with my skin color made it what it is.

13)  I have never heard of someone who looks like me being given up for adoption or aborted because of it.

14)  Who I am attracted to is not considered a political issue.

15)  I attended a private school.

16)  I am never asked to speak for everyone in my ethnic group.

17)  I can find colleges that have many people from my class background as students.

18)  I can criticize our government without being seen as an outsider.

19)  My family never had to move for financial reasons.

20)  If I am assertive, it is never assumed that it comes from my need to “compensate” or struggle with my identity.

21)  When I was a child, I never had to help my parents at their workplace regularly.

22)  When I talk about my sexuality (such as joking or talking about relationships), I will not be accused of “pushing” my sexuality on others.

23)  If I make a mistake or get into trouble, I am usually judged as an individual, not as an example of people who look like me.

24)  I can go for months without being called straight, heterosexual, or cis.

25)  I can use public facilities (store shelves, desks, cars, buses, restrooms, and train or plane seats) or standard materials (books, scissors, computers, televisions) without needing help or adaptations.

26)  When I dress for a formal event, I don’t worry about being accused of looking too dolled up or not pretty enough.

27)  As a child, I never had to help care for a family member.

28)  When I watch family advertisements for food, medicine, clothing, games and toys, the families on TV usually look like mine.

29)  I grew up feeling I could be whoever or whatever I wanted.

30)  I have never been asked, “What do [people like] you like to be called?”

 

 

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