Tag Archives: health

It’s Dwarfism Awareness Month and I’m Aware that Most of Us Don’t Understand Genetics and Medicine

8 Oct

Bones(Image by Gema used under CC 2.0 via)
 
 
“Hey, I had a test question about achondroplasia today!” an old roommate of mine reported to me a few years back. He was a medical student and had been studying for his licensing exam.

“Oh, yeah?” I asked. “What was the question?”

“Whether or not achondroplasia affects intelligence.”

“And the answer was…?” I smiled.

“The answer was no,” he replied, returning the smile.

That this was a test question implies a necessity for teaching this fact. Indeed, for a good part of modern history, children with achondroplasia and other types of dwarfism were too often assumed to be intellectually disabled and placed in institutions or special ed classes for life. Hence a meme from Little People of America that’s been floating around the Internet in honor of Dwarfism Awareness Month: “A common misconception about people with dwarfism is that they are cognitively delayed or mentally impaired. This is NOT true.” Activism will remain crucial until this misconception is no longer common.

What are the chances that it ever will be? Equality and empathy are the heart of every human rights movement, but these ideas alone did not disprove the idea that lower than average height is indicative of lower than average intelligence. Science did that. The scientific method uncovers the facts. Political activism spreads the word.

Despite what some extremist conservatives claim, science doesn’t have a liberal bias. It often reveals facts upsetting to many. For example, contrary to some Dwarfism Awareness campaigns, people with achondroplasia cannot be anything they want to be. They cannot be construction workers, gymnasts, military combatants, weight lifters, or participate in most contact sports because the achondroplastic spinal column is compressed, rendering these activities more life-threatening for us than for most people. That’s a scientific fact.

It need not be a cause for regret. I don’t consider a life without the ability to participate in contact sports or construction work any less enriching than a life without the ability to sing on key or identify bird calls or cut hair or write without spellcheck. (When I’m feeling snarky, I steal a line from this movie: “Dear White People on Instagram: You own an iPhone and you go on hikes. We get it.”) Competitive and aggressive feats of strength can be a way to be a stronger person, but they are not the only way. You can tell me a million times that I cannot safely lift anything heavier than a small child over my head and I will never take it as an insult.

What is insulting is to tout broad assumptions about conditions and bodies as facts when they have not been corroborated by several studies. Someone with dyslexia is unlikely to master a word scramble, but that does not mean she cannot be a skilled writer. Someone with Down Syndrome cannot practice medicine, but that does not mean he cannot get a job. If you hear that people with dwarfism cannot have a high IQ, teach, drive, play tennis, perform surgery, give birth, or take care of children, these are not facts. They are assumptions. Yet they have been dispersed far and wide, terrifying far too many people with dwarfism and their parents.

Having a rare genetic mutation has taught me that teaching science to the masses is hard. Most of us who are not scientists develop our understanding of medicine based on doctor’s visits, pop science news articles, and hearsay, as opposed to peer-reviewed research published in medical journals or textbooks. This is to be expected—when was the last time I read a medical journal straight through?—but it results in all sorts of inaccurate and potentially dangerous assumptions.

When I recently tried to explain to some new friends that the gene for achondroplasia is dominant, one insisted, “Achondroplasia can’t be dominant because then most people would be dwarfs!” Wrong.

When my parents visited one of their first Little People of America meetings shortly after I was born back in the early Eighties, one volunteer said, “Dwarfs don’t live as long as average-sized people do because they have to walk twice as many steps in their lifetime.” Also wrong. The most common cause of lower life expectancy among dwarfs throughout history has been a lack of access to appropriate health care due to social marginalization.

When a journalist asked the owner of a Hollywood freak show last year why one of his main performers had died at the age of 32, he replied, “A lot of them don’t have long life spans. Little hearts and the whole thing.” The reporter revealed in his excellent exposé of the depressing freak show business that the performer in question died of alcoholism.

My career as a writer has helped me see how much we love stories that are both out of the ordinary and easy to understand. My dwarfism has caused me to be confronted with the ubiquity of scientific misinformation in these stories and has helped me see how xenophobia facilitates the lazy thinking perpetuating scientific myths about minorities. Black Americans can’t swim? More like they were barred from learning how. Half of gay male teens have AIDS? File that one next to the Victorian belief that masturbation causes blindness. Women don’t have the skills to be Silicon Valley programmers? In Western cultures where men are expected to be bread-winners, women have been dissuaded from pursuing the highest-earning jobs, whether we’re talking about doctors and nurses, professors and school teachers, or milk men and milk maids.

This is why I approach most scientific and medical “facts” uttered to me with a heavy dose of skepticism. This can be draining. Some days I would like to simply trust Google or a Facebook Group for dwarfs instead of having to track down out-of-print medical textbooks or wait months for my orthopedist to have a free appointment in order to find it out if I should be concerned about osteoporosis or fibroids. But doubt is the fuel of innovation and vigorous research ultimately harms no one.

And when facing complex disabilities and learning about what certain bodies absolutely can and cannot do, we should not confuse being talented with being good. Just as it is hard for us to resist a fascinating story, it is hard for us to resist the idea that strength of body and mind also indicates strength of character. But acing any sort of competition says little about your ability to be brave, honest, generous or humble. Need proof? Celebrity scandals are but a Google search away.
 
 

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What Do You Think of When You See the Word “Healthy”?

6 Sep

Up close Star makeup mac, urban decay(Image by Courtney Rhodes used under CC 2.0 via)
 
In late 2013, journalist Katie Waldman examined the juicing trend, which was cropping up in the corners of Western society where there is a heavy focus on modern notions of “natural and organic” (think anywhere from Berlin’s Prenzlauer Berg to Burlington, Vermont and Berkeley, California) as well as in those where people competitively strive to follow the latest fashions in health and beauty (think the high-earning sectors of London, Manhattan or Los Angeles). Lifestyle writers have declared two years later that juicing has staying power, despite Waldman’s disturbing findings. Along with little to no evidence that cleansing the body with juice can be physically beneficial, she revealed that the language of most detox diets echoes the language used by those struggling with disordered eating – i.e., the idea that most of what the masses eat is on par with poison and you’re a bad person if you don’t purge it. She writes:

After days of googling, I still have no idea WTF a toxin is… Cleansing acolytes use the word toxin loosely, as a metaphor for our lapsed lifestyles…. The problem with this way of thinking is that food and weight are not matters of morality. Thin is not “good,” carbs are not “bad,” and in a world of actual pressing political and social ills, your dinner plate should not be the ground zero of your ethical renewal.

I’m neither a supporter nor an opponent of juicing in particular. Anyone should drink whatever they want to drink. But Waldman made a fantastic point about the way the upper and middle classes in the West so often believe one’s health to be a sign of one’s morality.

This idea is hardly new. The eugenics craze of the 19th and 20th centuries—that culminated with the Nazis exterminating “degenerates”—involved Fitter Families contests held at county fairs wherein judges handed out trophies to those deemed to have the best heritage, skin color, and tooth measurements. Professor Alan Levinovitz argues in Religion Dispatches that these attitudes have survived on into the present, altered only ever so slightly: “The sad thing is, it’s really easy to judge people on the basis of what they look like. We have this problem with race. In the same way, it’s really easy to look at someone who’s obese and say, ‘Oh look at that person, they’re not living as good a life as I am. They’re not as good on the inside because I can tell their outside isn’t good either.’ ”

Do we as a culture believe that being “healthy” is about appearance? Dieting often dictates that it’s about behaviors measurable through appearance. Psychologists agree to the extent that their notions of “healthy” are about behavior, but they also frequently intersect with notions of being “good.” But is being “healthy” about being brave, honest, generous and humble? Physicians would generally argue it’s about staving off death. Right-to-die advocates would argue it’s about quality of life over longevity. Is being healthy a matter of what scientists decide? Ed Cara found earlier this year that weight loss does not lead to happiness. Is happiness a measure of being healthy? Or are you only healthy if you suffer for it? Concepts of “healthy” vary vastly from person to person, and across cultures. Is that healthy?

In The Princess Bride—probably the Internet’s second-most quoted source after Wikipedia—the hero cautions, “Life is pain. Anyone who says differently is selling something.”

Yet the villain says, “Get some rest. If you haven’t got your health, you haven’t got anything.”

Whether you agree with any or none of the above, leave me your thoughts on the meaning of “healthy” either in the comments or via an e-mail to paintingonscars[at]gmail.com

 

 

When It Comes To Health, Who Should Minorities Trust?

12 Apr

Medication diet squircle(Image by Barry used under CC.20 via)

 

At the beginning of this year, I underwent orthopedic surgery and rare complications immediately arose from it, causing me to take three months of sick leave. In that time, both my country of origin and my country of residence experienced outbreaks of measles that have set the Internet ablaze with raging arguments about medicine, personal choice and the greater good. While the critics of Big Pharma have plenty of good points, recent studies of Big Herba—which is unregulated in the U.S.—have debunked an array of flaws that can be deadly. Glossing over the vitriol, at the crux of the matter lies a very reasonable question: When it comes to health, who should you trust?

“Trust to your doctor” sounds simple enough until we consider the many instances throughout history when medical professionals have abused this trust, particularly in regard to minorities. Health organizations around the world classified gay people as mentally ill as late as 2001. A panelist on Larry Wilmore’s The Nightly Show last month cited the Tuskegee syphilis experiment, which treated African-American men like lab rates from 1932 to 1972, as the basis for his overarching distrust of government health organizations. Investigations recently revealed that the U.S. Public Health Service committed similar crimes against mental patients and inmates in Guatemala in the 1940s. The polio vaccine, which has saved millions of lives globally, was first tested on physically and mentally disabled children living in asylums and orphanages. Researchers advocated the forced sterilization of trans people and ethnic minorities as recently as 2012. And of course there were the Nazis and the many, many scientists before them who passionately promoted eugenics. ITV recently rebroadcast a documentary hosted by Warwick Davis detailing Dr. Mengele’s horrific experiments on dwarfs at Auschwitz.

In other words, minorities don’t have to dig too deep to come up with plenty of reasons to be wary of scientists and doctors. Regulation, transparency and a never-ending, highly public debate on bio-ethics and human rights are necessary to prevent such crimes from happening again.

But an ideological opposition to all doctors based on such abuses ignores the myriad successes. A Slate article appearing last fall, “Why Are You Not Dead Yet?” catalogs the thousands of reasons so many of us are living so much longer than our ancestors did—from appendectomies to EpiPens to everyday medications—which we so often overlook because we have come to take the enormous medical advances of the past 200 years for granted.

And yet, as so many scientists are only too ready to admit, science does not know everything. Almost no medical procedure can be guaranteed to be risk-free, and many people base their distrust of doctors on this fact. My current post-surgical complications were just cited to me by an acquaintance as reason enough for why I never should have had the operation at all and instead gone to a TCM healer.  

In my 33 years I have undergone 14 surgeries, physical therapy, hydrotherapy, occupational therapy, electro-muscular stimulation therapy, and the list of medications I’ve taken undoubtedly exceeds a hundred. I have also been treated with reiki, shiatsu, osteopathy, acupuncture, massage, prayer, and herbal remedies based on macrobiotic, homeopathic and detox theories. Some of these treatments I chose as an adult, and some of them were chosen for me by adults when I was a child and a teen. Some of the medical treatments worked, some didn’t, and some caused new problems. Some of the alternative treatments rid me of lingering pain, and some were a complete waste of time, money and energy as my condition worsened. I won’t ever advocate any specific treatment on this blog because my readership is undoubtedly diverse and the risk of making inaccurate generalizations is too great.

Indeed, a grave problem in the public debate on health is the frequent failure to acknowledge human diversity. Most health advice found online, in the media, at the gym or a healing center is geared not at minorities but physiotypical people, who are seeking the best way to lower their risk for heart disease, fit into their old jeans, to train for a marathon, or to simply feel better. They are not seeking the best way to be able to walk to the corner or have enough strength to shop for more than half an hour. Those in the health industry who endorse one-size-fits-all solutions—“We just need to jog/Start tai-chi/Eat beans, and all our troubles will go away!”—rarely address minority cases that prove to be the exception to their rule. But atypical bodies have just as much to teach us about our health as typical bodies, and leaving them out of the conversation benefits no one but those seeking to profit off easy answers.

When it comes to seeking treatment for my condition, I follow a simple rubric: I don’t want to be the smartest person in the room. I have no professional training in medicine or anatomy. As this physician explains so well, self-diagnosis is a very dangerous game. Yet I sometimes am the expert on my body thanks to the relative scarcity of people with achondroplasia—there are only 250,000 of us on earth, or 0.00004% of the world population—compounded with the scarcity of people with achondroplasia who have undergone limb-lengthening and sustained bilateral injuries to the anterior tibialis tendons. A visit to a healing center or a hospital often entails conversations like these:

Shiatsu Healer: You’re walking with a sway-back. Your wood energy is obviously misaligned because you are stressed.

Me: My hips sway when I walk because the ball-and-socket joint in the hip is shaped instead like an egg-and-socket in people with achondroplasia.

***

Physical Therapist: Your hips sway when you walk because one leg is obviously longer than the other.

Me: No, I have my orthopedist’s report documenting that my legs are precisely the same length. My hips sway when I walk because the ball-and-socket joint in the hip is shaped instead like an egg-and-socket in people with achondroplasia.

 ***

Nurse: Your temperature is pretty high. I’m a bit worried.

Me: These anesthesiology guidelines I got from the Federal Association for Short-Statured People say that hyperthermia is to be expected post-op in patients with achondroplasia.

Sometimes the information I offer goes unheeded. In both the U.S. and in Germany, I have found arrogance is equally common among doctors and healers. Some of them are delightfully approachable, and others are so socially off-putting that they make you want to throw your wheelchair at them. The same arrogance, however, can take different forms. I have documented before the particular brand of pomposity so endemic to doctors, and it is safe to say that holistic healers are less likely to treat their patients like products on an assembly line because, by definition, they are more likely to take psychological well-being into account. But they are also more likely to endorse a one-size-fits-all solution for health, which invariably marginalizes minorities like me.

Those of us with extremely rare conditions are far more likely to find specialists among those licensed in medicine than among alternative healers. Living Naturally, the only website on alternative treatments I could find that even mentions achondroplasia, emphasizes that none of the therapies they suggest for achondroplasia have ever been tested on patients who have it. To be fair, rare conditions by definition are not well-known to your average GP either. But physicians more often know how to work with the facts, embracing the medical literature on achondroplasia I hand to them. Some alternative healers also embrace such literature, while others dismiss anything written by anyone in a white coat.

Even when a visceral hatred of hospitals and their hosts is irrational, it is understandable. My most recent stay involved some of the kindest medical professionals I have ever encountered but nevertheless left me waiting for two and a half hours on a metal bench with no back support in a hallway glaring with fluorescent lights and echoing with the cries of patients in pain. I respect everyone’s right to opt against surgery, or any medical treatment, as long as their condition does not cause others harm. But no matter how much modern medicine has abused minorities’ trust, disabled people are the only minority that cannot afford to forgo it.

A worldwide study presented to Little People of America found that, at this point in history, dwarfs have a higher quality of life—i.e., access to effective health care, employment opportunities, acceptance in society—in Northern Europe than anywhere else on earth. Reductive arguments that demonize all of Western medicine because the Nazis! can be canceled out by reductive arguments that dismiss anything developed outside the West because Asia’s terrible disabled rights record!  

Broad generalizations like “Natural is better” can only be upheld by those ensconced in the privileges of a non-disabled body. In 2011, the parenting website Offbeat Families banned the term “natural birth”—urging writers to instead refer to “medicated” and “unmedicated” birth—because “natural” had so often been used to imply “healthier.” An unmedicated birth is wonderful for anyone who can and wants to experience it, but it is important to remember that it is a privilege. A privilege, like a disability, is neither your fault nor your achievement.      

“Healthy” is a relative idea. Our choices about our bodies will always be limited. This is a sometimes terrifying fact to face. But in the public debate, we must remember that it is a fact those among us with rare disabilities and conditions can never avoid. In failing to remember it, we fail to make decisions about human health that are truly informed.

 


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.

 

 

What Makes You So Special?

13 Oct

Leg-formsDisney World is changing its policy for disabled customers this week since it’s come to light that many families have been hiring disabled people to help them cut to the front of the lines.  Like stealing disabled parking spaces, this kind of cheating requires a brazen combination of laziness and self-righteousness.  What kind of family believes that the agony they experience waiting in line is comparable to what a disabled customer experiences?  

MSN reports, “Stories of wealthy families hiring disabled tour guides to pose as family members have drawn national attention and scorn. But the more common abuse is subtler: people faking hard-to-verify handicaps such as heart murmurs, back spasms or claustrophobia… ”

The news broke the very same day that I had my first meeting with an adviser here in Berlin to explore the options available to me for disabled status. 

“It’s important not to lie,” he said bluntly.  “Don’t exaggerate your pain, but don’t feign bravery, either.” 

Indeed, ego-driven dishonesty can go either way.  Some lie and cause themselves unnecessary discomfort all for the sake of their own pride, while others lie and take advantage of assistance all for the sake of garnering special attention.  It creates a burden for genuinely disabled people who must convince cynics that their medical conditions are bona fide, but not necessarily tragic.     

I don’t know what level of disabled status I currently qualify for.  In elementary school, I took a specialized phys ed class and I was the only kid who was allowed to sit in a chair instead of on the floor during story-time to avoid distracting back pain.  Yet on both occasions that my family took me to Disney World, I managed the hour-long waits in line without assistance.  But I couldn’t manage that today.  Then again, I have good days and bad.  Should I mention all this on my application, or does it sound like I’m making things up?

Determining disability is to determine whether your suffering—which is always unique and important to you—is in fact unique to your peer group.  Decades of being designated as different cause many disabled people to balk at the idea of being given special treatment. (As I’ll explore next week, many in the dwarf community go so far as to insist that dwarfism isn’t a disability.)  Yet those willing to hire a disabled person for a day at Disney World appear to rebel against the idea of not being given special treatment.

I hesitate to delve into the topic of lying and whining because, in far too many parts of the world, victims of horrific suffering are readily silenced by being dismissed as liars and whiners.  To a heartless person, anyone’s complaint qualifies as whining, except his own.  In an intolerant society, “Suck it up!” is barked at anyone who ever sheds a tear or speaks up about injustice.  The world usually needs more compassion than cynicism.  Given the choice, I’d rather live with too much whining than too much cruelty and abuse. 

But whining abuses compassion.  I don’t believe the majority of cheaters at Disney World deviously set out to fake illness and maliciously steal a disabled child’s spot in line.  In my experience, it’s much more common that people with mundane problems truly believe their difficulties entitle them to exceptional treatment. 

A friend who was diagnosed with Obsessive Compulsive Disorder in childhood once said that whenever he tries to explain this to a group of 20-somethings, more often than not a few will start saying, “I think I have that, too!”  This can happen innocently enough: Most of us like to consider new experiences by seeing how they relate back to those we are already familiar with.  And misery sure loves company.  But anyone with clinical OCD knows that this condition is not simply about odd habits that make for charming little anecdotes, or pathologizing our eccentricities so that they cannot be questioned.  In our individualistic LOOK AT ME! culture, there is a fine but crucial line between trying to empathize in order to understand a different experience, and trying to empathize in order to snag a place for ourselves in the spotlight. 

This is not to silence those whose problems are ordinary.  (We all need to vent about the lines at Disney World.)  But false equivalencies can also silence those whose problems are extraordinary.  Being spoiled doesn’t just render us disagreeable – it renders us ignorant.  To relativize all difficulty risks misunderstanding and overlooking the profound effects of true disability, true poverty, true trauma, and true grief.

When middle class college grads complain about being “poor” because they can’t buy as many DVDs as they did when they lived with Mom and Dad, they’re disregarding the poverty line.  When a young woman claims to suffer from PTSD after being pickpocketed, she’s stretching the definition of the word into meaninglessness.  When breaking up with a boyfriend or losing a pet is described with the same superlative words we use to describe battling cancer or losing a child, we overlook the difference between the kind of pain no one should have to endure and the kind of pain everyone should expect.  Blunt comparisons—“I know exactly what you’re going through!”—downplay severity and dramatize the mundane, impeding rather than spreading awareness. 

In applying for disabled status, I will find out from an objective source just how disabled I am.  If my weekly pain, fatigue and weakness qualify as Severe or Moderate, then I’ll swallow any pride I have about wanting to appear stronger and accept it.  If my difficulties are judged to be Mild, then I’ll discard any selfish wishes I have about the benefits of Severe status and accept it.  I do feel substantially exceptional when I’m the only one in a crowd of friends who absolutely must sit down after a 20-minute walk.  But other experiences make these inconveniences seem not only minor but trivial.

I lived in a pediatric rehabilitation hospital for five months when I was 11 years-old and undergoing my first limb-lengthening procedure.  On my first day in group therapy, the patients introduced themselves to me and explained why they were there. 

The first guy had a degenerative nerve disorder that was life-threatening.  “I was talking about it with my dad and he told me, ‘I wish you’d never been born.’  Thanks, Dad.”

The second kid had been shot in the hip and paralyzed in a gang war. 

The third guy was quadriplegic.  “I’m actually ready to be discharged, but I’m having a hard time finding my own apartment with a caregiver to live with me.  My mom has decided she doesn’t want to take care of me round the clock.”

Then a teenage girl talked about her upcoming discharge.  The room erupted into congratulations until she began to choke back tears.  “I’m being discharged because the treatments aren’t working.  At this point, they said they can’t even tell me if I’m going to live to see tomorrow.” 

Then it was my turn to introduce myself.  “Um, I’m having my legs lengthened so that I can be taller.” 

I’m sure this was met with courtesy and active listening, but at that moment I felt I deserved nothing but crickets.  That night in my hospital room, I tossed and turned, wondering if she would live to see the next day.

My fellow patients in group were ultimately sympathetic to any struggles I needed to discuss.  What they taught me above all else is that, as my advisor said, it’s important not to lie.  Tell the truth, and be aware of where your reality lies in relation to others.  Fight against the stigma surrounding disability, poverty, trauma, and grief.  And don’t claim to know the unique despair experienced by those who live it.   If you claim to already know, you’ll miss what they have to teach you about the world you live in. 

Like why someone would really need to cut in line.

 

 

“Richard III Was Dwarf, Doctor Says”

10 Feb

KING RICHARD III (Image by Leo Reynolds used under CC license via)

 

From an article appearing 20 years ago in The Seattle Times on August 23, 1991:

King Richard III was a dwarf, according to a medical diagnosis that has outraged defenders of the monarch.

“The combination of slow growth and short stature, preceded by a difficult breech birth… and intimations of physical weakness and sexual impotence… suggest idiopathic pituitary dwarfism,” Dr. Jacob Van der Werff ten Bosch said in an editorial published today in the medical journal Lancet.

Balderdash, say Richard’s partisans.  “Everyone knows Shakespeare’s Richard III, but not everyone knows the historical evidence,” said Jack Leslau, a biographer of the king. “There are various medical theories that all work on the assumption that he was some sort of monster with a physical deformity.”

The Lancet editorial was timed for the anniversary of Richard’s death in battle Aug. 22, 1485, at Bosworth Field – where, as Shakespeare had it, the monarch offered “my kingdom for a horse!”

Van der Werff ten Bosch, a former professor of medicine, says there is no reason to take offense. “As a doctor I would not think it’s ridiculing a king to call him a dwarf. It’s simply a medical diagnosis,” he said.

Since the excavation and analysis of the royal bones announced this past Monday, the BBC now reports, “Richard III was portrayed by Shakespeare as having a hunched back and the skeleton has a striking curvature to its spine. This was caused by scoliosis, a condition which experts say in this case developed in adolescence. Rather than giving him a stoop, it would have made one shoulder higher than the other.” 

So what Dr. Van der Werff ten Bosch said all those years ago was wrong.  At least half of it, anyway.

 

 

So Who Should The Cliques Make Fun Of Now?

6 Jan

Christina Red Carpet A new study claiming that Overweight and Class 1 Obese people have a lower mortality rate has been bouncing around the world since Thursday.  National Public Radio’s report seems to be the most comprehensive but hints at the two most extreme, polarized viewpoints:

Cosmetic: This is a victory for the overweight—now we can trash skinny people (again)!

Medical: If people hear about this, everyone will stop exercising and eating their vegetables and then everyone’s going to die!

Both views treat the public like infants who can’t possibly think for themselves.

Doctors are right to worry that a sizeable portion of the population will use this news as an excuse for whatever unhealthy habits they love.  This is why it is important to include the many possible factors skewing the results.  But many people will always cherry-pick whatever statistics suit their lifestyle or claim to be the exception to the rule.  I don’t have any political solutions for engaging with contrarians—whether we’re debating eating habits or global warming—but talking down to them and using scare tactics has a pretty high failure rate.

And from the disability rights perspective, there are exceptions to the rule when it comes to health.  Thousands of them.  As said before, a round belly is not always a sign of fat.  A bony body is not always a sign of an eating disorder.  Many forms of exercise can be more hazardous than beneficial to people with certain conditions.  And many life-threatening conditions are invisible.  Medical tests, not appearance, are always the most reliable indicators of health.  This robs us of the easy answers we crave and which facilitate public debate, but there has never been and never will be a one-size-fits-all health program for the 7 billion humans on the planet.

You and your doctor know better than anyone else if you are healthy or not.  If she says you are overweight but your genes and cholesterol levels put you at no risk for heart disease, she’s probably right.  If she says your weight is ideal but your eating habits put you at risk for malnutrition, she’s probably right.  And if her advice seems sound but her delivery makes you feel too ashamed to discuss it, go find someone with better social skills to treat you.  At the individual level, it’s no one else’s business.  Outside of the doctor’s office, it shouldn’t be any more socially acceptable to discuss someone else’s weight or waist size than it is to discuss their iron levels, sperm count, or cancer genes.

But beauty standards and health trends often go hand-in-hand.  And what really needs to go is the lookist idea that we’re all semi-licensed doctors who can diagnose people just by glancing at them and deciding how they measure up according to the latest medical research.  The reason we have a hard time letting this go is because it’s fun to point out others’ supposed weaknesses.  It’s self-elevating and validating to snicker that ours is the better body type because it calms our insecurities.  Beauty standards are cultural and constantly morphing throughout history, but they have always remained narrow.  (This is especially the case for women, though I sincerely apologize for not providing more research on men.)  Whether fawning over big breasts or flat tummies, public praise for certain body types has almost always been at the expense of others:

 

 
After decades of the Kate Moss heroin chic, Christina Hendricks (see above) of Mad Men has garnered lots of attention for her curves and this week’s study is likely to encourage her fans.  “Christina Hendricks is absolutely fabulous…,” says U.K. Equalities Minister Lynne Featherstone.  “We need more of these role models. There is such a sensation when there is a curvy role model.  It shouldn’t be so unusual.”  She is dead right that it shouldn’t be hard for curvy women to find sexy heroines who look like them in film and on television, just as skinny women or disabled women or women of any body type shouldn’t have to give up on ever seeing celebrities with figures like theirs.  But “Real women have curves!” is just as exclusionary as the catty comments about fat that incite eating disorders.  And when Esquire and the BBC celebrate Hendricks as “The Ideal Woman,” they mistake oppression for empowerment.

We can accept the idea that people of all sorts of different hair colors and lengths can be beautiful.  Will mainstream medicine and cosmetics ever be able to handle the idea that all sorts of different bodies can be healthy?  History says no.  But maybe it’s not naïve to hope. 

And what does Christina Hendricks have to say about all of this?  “I was working my butt off on [Mad Men] and then all anyone was talking about was my body.”

Touché.

 

 

Lessons Learned From A Laminectomy

2 Dec

Sippy Cup Forgotten

(Image by Randy Robertson used under CC license via)

 

Five weeks ago I had a spinal surgery to relieve compression brought on by my achondroplasia.  I took a break from blogging because, first of all, I’ve only recently been allowed to sit for longer than an hour or two, and secondly, major life interruptions are almost always best discussed from hindsight.  (Even though the personal usually ends up being political, this blog is not and never will be a tell-all of how high my temperature is or how my incision looks today.) 

I will confess that the hardest aspect was the lack of community.  No one at home or in the hospital had the same condition I did.  Since several of my readers have achondroplasia or children with achondroplasia, and I myself was ravenous for any sort of information I could get my hands on, here’s a synopsis of the past five months:

One night in July, I noticed I couldn’t sleep on my stomach without the muscles in my left thigh and hip burning with pain.  I took some Ibuprofen and applied a hot pack but to no avail.  Within a few days, the burning sensation expanded up into my lower back and deep in my backside.  It came whenever I lay on my stomach, lay on my back, or walked more than a few yards.  Strangely, it disappeared when I was sitting up straight.  I had to sleep propped up on pillows to keep the pain at bay and woke up during the night whenever I curled into a new position.  I described it as sciatica – which is, apparently, just a name for a set of symptoms and has various causes.  Maybe sleeping for five nights straight on a friend’s uncomfortable couch had done it?  My doctor gave me a prescription for physical therapy and stronger pain killers, but the medication had no effect and, after three weeks of physical therapy, the symptoms only got worse.    

By the time I met with an orthopedist, the burning began to be replaced with a pins-and-needles sensation that ran all up and down my left leg and worsened with walking.  Once again, it disappeared whenever I flexed my hips.  While the therapists tossed out the usual suspects for usual patients—disc herniation or degeneration, etc.—my family and I had begun to suspect achondroplastic lumbar spinal stenosis.  People with achondroplasia are at high risk for this because our spinal columns are exceptionally narrow and become acutely so with age.  The symptoms described in the medical literature on achondroplasia exactly matched mine.  Between one-quarter and one-third of all people with achondroplasia develop stenosis, usually in their 20s or 30s, and I was a perfect candidate.  Average-sized patients with stenosis are usually encouraged to turn to surgery only as a last resort, but achondroplastic patients almost always require a laminectomy.  And, according to most specialists I’ve spoken with, the sooner the better.  

I hate having surgery.  Talking with the anesthesiologist about all the medications I’m allergic to brought back all sorts of unpleasant memories.  But I eventually got in contact with an excellent team of neurosurgeons who were very informed and reassuringly confident that a laminectomy (without spinal fusion) would be the best defense against permanent paralysis.  And with my 13th operation now behind me, I know several things I didn’t before.

I learned that, unlike orthopedists, neurosurgeons cannot tell you at what time your surgery will take place until the day of, if at all, because emergency cases such as strokes and spinal cord injuries take priority.  Your surgery could be postponed by such cases more than once, as mine was.  It is surreal to find out you just spent a whole day without food or water for nothing, while also finding out the people who knocked you to the back of line are probably fighting for their lives.  

I learned that, contrary to what I had assumed, you wake up after back surgery lying on your back.  I was especially grateful for this after my partner pointed out that I had a black-and-blue mark on my cheek from lying on my face for the two and a half hour procedure.

I learned that the day of surgery is one of the easiest.  Waking up in the recovery room and discovering I could cope with the pain and seeing myself wiggle my feet sent waves of relief everywhere.  Seeing my husband waiting for me in my hospital room was thrilling.  And the drugs took care of the rest.

After that, however, each day threw a new curveball, whether it was the pain of moving, the vomiting that came after moving (typical for spinal patients), or the dilemma of never wanting to go to the bathroom because it destroyed whatever comfort I had finally found.  Unlike the patients whose stenosis had been caused by disc herniation, I could not walk without a walker after surgery and managed no more than baby-steps.  As with limb-lengthening, I learned to take it week by week in order to see that progress was happening, however slowly.  By the third week, the worst pain was gone and I could walk short distances without any assistance.  (After five weeks, I can now manage a few blocks, though it takes me twice as long as it used to and my balance remains fragile, so I like to avoid crowds.)

I learned that after spinal surgery, walking and lying down are good for you.  Sitting and standing are bad for you.  I can’t remember the last time I watched so many films in such a short time.

I learned that sippy cups are perfect for drinking when you have to lie flat on your back.  They make you look ridiculous/adorable.

I learned nurses are among the hardest working, strongest, most fearless people in the world.  No one whose work is free of analyzing other people’s vomit and urine can say otherwise. 

I learned (once again) that there is always someone at the hospital about to go through something a lot worse than what you’ve endured.  Hospitals have a bizarre way of inundating you with more self-pity than you’ve ever felt before and, at the same time, more sympathy for others than you’ve ever known before.

I learned that as an adult I could see how much skill and patience goes in to being a great caregiver.  When you’re a child, you expect—and should be able to expect—your parents and relatives providing unconditional support and tolerance for your needs and your bad moods.  When you’re an adult, you’re more likely surrounded by friends and partners; people who choose to check in on you and listen to you and soothe you for three hours straight and accompany you to the doctor and run errands for you and reach things you can’t out of their own free will.  You begin to understand the sacrifices your family made and those your true friends are making.  Just because you don’t deserve the raw deal you’ve been given doesn’t mean you deserve to take their patience or attention for granted.  No matter how bad you think you have it, always, always say thank you to whoever is being kind to you.  (And take a break from whoever isn’t.)

So now I have a new scar and hopefully I’ve helped flood the web so that googlers can find information about “achondroplasia spinal stenosis” more easily.  In my experience, seeing what you’ve learned, what you’ve been humbled by, is the whole point of having scars.