Tag Archives: medicine

The U.S. Supreme Court Just Knocked Down A Cornerstone of Human Rights to the Cheers of an Extremist Few

25 Jun

Hours before the German Bundestag removed a Nazi law restricting public information about abortion services, the U.S. Supreme Court struck down the constitutional right to medical freedom, opening the door for laws that seek to not only criminalize abortion but many forms of miscarriage treatment, contraception, IVF, and maternal behavior during pregnancy. The Court came to this decision amidst a historically low approval rating among U.S. voters of 25%. It is not a coincidence that the countries rated highest in the Democracy Index currently guarantee reproductive freedom to citizens.

Having made many, many life-altering medical and family-planning decisions, I despair when I see people on any side of this issue projecting their deeply emotional, personal experience onto someone else’s to further a political agenda. Any safe and fair society requires STRONG, CONTINUOUS, EASILY ACCESSIBLE support for people who are delighted about their pregnancy, people who want to end their pregnancy, people who don’t know how they feel about their pregnancy, people who placed their children for adoption, people who regret having placed their children for adoption, people who feel relieved about their abortion, people who regret their abortion, people who are childfree and happy, people who wish they’d had kids when they could, people who love their kids but need help, and people who hate parenting and really need help.

I don’t care if any of these scenarios is more likely than another. When it’s your life, your right to support should not be contingent upon how many other people feel the same way. That’s the basis of humans rights, of democracy. It is the only option for anyone who believes in harm reduction instead of moral superiority regarding family planning politics. Anything short of broad support for all the aformentioned people leads to miserable parents, miserable children, miserable communities, silence and secrecry and shame and abuse and misery everywhere.

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Summer Body Challenge

4 Aug

embedded bodies(Image by Camil Tulcan used under CC 2.0 via)

 

Yes, I know summer is halfway over. No need to tell me.

And it’s been seven years since I hailed eating-disorder survivor Chloe Angyal’s truism that there is no right way to hate your body. And in those seven years, I have come to see more and more what a pillar of everyday conversation body-bashing is, particularly in social circles dominated by women. Someone complains about their weight-gain since pregnancy. Another bemoans the physical signs of aging. Another comments on how fattening someone’s lunchtime meal is, which is why they opted against it. Another talks about some new product they love intended to combat certain bodily features. Another knocks a body part on someone they dated/are dating/want to date. Like insecurity, it’s everywhere.

I’m not going to pretend that kicking this habit is a quick fix. It’s far from easy to accept your every single physical feature despite how unfashionable the society you live in currently considers it. But if many of us enjoy challenging ourselves with strict diets and exercise regimens, why not challenge ourselves to stay off the body-bashing? At least until September 21st?  Until then, only positive or matter-of-fact observances about your physical features. And those that don’t belong to you. Discussing pain, illness, or disability is fine, but that should never link to comments on physical appearance. Discussing fashion preferences is fine, as long as they never link to comments about whose body can “pull it off”. Do you think you can join me in this? If not, why not?

Additional Rules for the Super-Disciplined Who Want to Push Themselves Even Further:

  • Food is to be enjoyed, not criticized. Don’t voice why you don’t like something or how it doesn’t fit into your diet, unless you have a dangerous allergy and traces of a given food could send you to the emergency room. If you don’t like something, quietly leave it to the side or request it be left off your plate. In turn, when you’re the cook, never comment on how much or little a guest ate.
  • Exercise, on the contrary, is to be complained about. Why do so many of us rave about how good we feel after an exercise session, but not, say, a hot bath? Is it possibly to garner attention and praise for having spent time on something so boring and uncomfortable? When I exercise, I groan and swear a good deal of the way through and I glare at any instructor who’s too perky. I’ve found that reiterating this afterwards makes people laugh – as opposed to bragging about my achievement, which might inspire some to follow my routine, but will certainly make some others feel worse and/or resentful. Some form of exercise is generally good for most of us on earth. But, like doing the laundry or taxes, we don’t have to pretend to like it. Those who sincerely do like exercising are blessed and therefore have all the more reason to be happy without needing external validation. They can curl up with their self-satisfaction and write about in their journals. The ones not posted online.
  • Do you have any suggestions to up the challenge? Tell me in the comments.

What’s the reward for those who meet this challenge? That’s for the winners to find out.

 

 

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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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When We Ignore Clinical Trials, We Ignore the People They Protect

11 Sep

Mime/Sleep(Image by Del May used under CC 2.0 via)

 
Back pain is one of the most common causes of sick leave in many Western countries. It is also one of the most common symptoms of achondroplastic dwarfism. The severe curvature of the spine coupled with innate hypotonia (i.e., low muscle tone) results in chronic pain from birth on, at times requiring back-braces and/or surgery to avoid debilitating complications.

I recall being younger than five-years-old, sitting cross-legged on the floor with a book and knowing I couldn’t stay like that for more than a minute or so before the aches would begin. I would usually end up slinking toward the sofa. In primary school I was exempted from sitting on the floor, given a chair with which to tower over my classmates during story-time. Years of physical therapy and orthopedic consultations have done little to alter this reality because the curvature is anatomic. Exercises and ergonomic furniture make the difference between utterly unbearable pain and merely lingering pain. At the end of a three-week stay in Tokyo, I wrote to my partner, “I will miss so many things about this city. Things I will be happy to come home to: couches, chairs with backs, toilets with seats, back support in general.”

A fascinating interview with architect Witold Rybczynski appearing last month in The Atlantic chronicled the history of the chair and the differences between cultures in which people primarily sit on chairs and those in which people, like the Japanese, primarily sit on the floor. The reason for the dichotomy continues to elude researchers:

You’d think, for example, that people in cold, wet climates would be more likely to sit on chairs, so as to avoid the unpleasant ground. But the Japanese, who endure frigid winters, have traditionally sat on floor mats, while the ancient Egyptians, who lived in a warm, dry climate, are thought to have invented the folding stool. Nor is chair-sitting necessarily a matter of lifestyle; some nomadic groups move about with collapsible furniture, while others don’t. Nor is it always a product of economic or technological advancement; the prosperous Japanese were long aware that people in other parts of the world sat on chairs—they just chose not to. Some societies, like China, have transitioned from being predominantly floor-sitting cultures to being predominantly chair-sitting cultures. Others, like India, idiosyncratically mix the two approaches.

California-based acupuncturist Esther Gokhale believes that members of most floor-sitting cultures do not suffer as much back pain as those of us in chair-sitting cultures. National Public Radio’s Goats and Soda program interviewed Gokhale in June about a series of exercises she developed—the Gokhale Method—intended to reshape the Western human spine and rid sufferers of back pain. Doctors in the San Francisco Bay area have been referring patients to Gokhale, and several celebrities have followed suit, despite that her method has not yet been clinically tested. Dr. Neeta Jain demands, “If people are finding things that are helpful, and it’s not causing any harm, then why do we have to wait for a trial?”

We should wait for many clinical trials because they would prove decisively whether or not the method is causing any invisible harm, and it would control for preexisting conditions like achondroplasia, cerebral palsy or lupus. While there is no proof that Gokhale’s method cannot lessen back pain for people with achondroplasia, there is also no proof that her one-size-fits-all approach cannot cause more pain or injury to people with achondroplasia as many exercises developed for average bodies can.

As a doctor, Jain is in a position of authority and she is acting irresponsibly when she fails to acknowledge the possibility of unforeseen risks. Perhaps she only refers her patients to Gokhale after screening them for potentially complicating factors, but her statement excludes such caution and instead serves as an advertising slogan.

Perhaps the greatest achievements of modern medicine has been its ability to serve not only the general population but those with rare and exceptionally complex conditions. Yet advice found in the health sections of any mainstream news source tends to overlook those of us with rare conditions and official disabilities. This is a truly ironic form of marginalization, since our lives have undoubtedly been far more affected by issues of health and medicine than the average reader. Going so far as to call it ableism seems extreme, since space is limited from a journalist’s point of view. But it is unfortunate that the best health advice for most people with disabilities is to ignore the mainstream health sources that ignore them.

 

 

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Can We Understand Race In Terms of Medicine?

14 Feb

Take off your fucking mask(Image by Taylor Dave used under CC license 2.0 via)
 
Leaving you this Valentine’s Day with the urging to go read an excellent discussion at NPR titled “Is It Time to Stop Using Race in Medical Research?”

Then go read Alva Noë’s essay, “Can You Tell Your Ethnic Identity from Your DNA?” He writes:

…even if, in the ideal case, we find meaningful clusters of similarity in the space of genetic variation, there is no reason to think that these will map onto ethnicity or other categories in terms of which we understand our own identity. Identity, after all, varies non-continuously. French and German villages may be separated by the smallest of geographic distances. Genetic variation, on the contrary, so far as we now know, varies continuously. DNA is just not going to carve up groups at their culturally significant “ethnic” joints.

This interests me personally because any sort of categorizing of humans ends up being far more complicated than our everyday discourse would have us believe. Race, gender, and disability are so often thought to be concretely definable through bodily indicators, yet our categories for these identities—black/white/Asian, male/female, healthy/disabled—often fail fantastically to represent a good portion of humanity. As I’ve shown before, dwarfism itself is a social construct. All identities are to some extent.

 

 

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Curiosity Kills the Rat

19 Oct

From the Archives

 

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

— Michael Franti

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

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

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

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

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

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

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

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

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

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

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

 

 

Originally posted May 19, 2012

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We Gotta Watch Our Language When It Comes to End of Life Debates

13 Sep

Jerzy body

(Image by Ekaterina used under CC license via)

 

On Friday the British Parliament resoundingly struck down a bill that would guarantee its citizens the right to physician-assisted death. Yesterday California’s legislature voted to make it the sixth state in the U.S. to legalize it.

Robust, nuanced arguments have been made for and against physician-assisted death for terminally ill patients, and none of these arguments could be successfully summarized within a single article. This is why a conclusive stance on the issue will never appear on this blog. It is nothing but moving to hear the deeply emotional pleas from those in the right-to-die movement who have thought long and hard about the prospect of death, who feel empowered by having some choice when facing down a daunting fate, who don’t want to find out which of their loved ones may turn out to be unskilled at care-giving. And it is equally moving to hear the experiences of those working in hospice and palliative care who face the approach of death every day with the determination to make it as minimally painful and emotionally validating as possible for all involved.

However, despite the emotional validity of both sides, there are tactics the right-to-die movement should avoid if it does not wish to make our culture more ableist than it already is. Openness about end of life decisions can shed light on a subject previously cloistered away, but the more the right-to-die movement celebrates the idea of ending someone’s life before it transforms into a certain condition, the less willing the public may be to engage with and invest in those who live in that condition.

Which is why no one should call physician-assisted death “Death with Dignity,” as lawmakers in Washington, Oregon, and New York have done. The implication that anyone who opts out of assisted death might live an undignified life is reckless and arrogant. A patient declaring the prospect of invasive life-saving interventions “too much” is fair. A writer declaring the quality of life of those who opt for them “pathetic” is ostracizing. It insults not only those enduring late-life debilitation, but the everyday conditions of many, many disabled people of all ages around the world.

Even today, when so many movements push to integrate disabled people into the mainstream, the average person is generally isolated from the reality of severe deformity, high dependence, and chronic pain. This isolation feeds fear and is therein self-perpetuating. As opponents have pointed out, many right-to-die arguments quickly snowball, equating terminal illness with chronic illness and disability, and portraying all three as a fate worse than death. Hence the name of the New York-based disability rights group Not Dead Yet.

Vermont’s recent law, the Patient Choice and Control Act, bears a far less polemic name than the others currently on the books. That’s a start. Experts are divided as to whether the current openness about end of life decisions in the U.S. has led to more terminally ill Americans considering and opting for hospice and palliative care. Regardless, both sides should be encouraging well-informed discussions that honor a patient’s right to voice his beliefs based on personal experience, and a disabled person’s right to not be further marginalized by a culture that has historically feared her existence.

 

*Note: I use “physician-assisted death” and other terms in deference to World Suicide Prevention Day this past Thursday and the media guidelines from the Center for Disease Control, which discourage use of the word “suicide” in headlines to avoid contagion.

 

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And the Name of the Drug That Might End Dwarfism Is Vosoritide

28 Jun

Medicine 3(Image by Marosh used under CC license via)

 

Pharmaceuticals company BioMarin announced last week the first results of their clinical trials for the drug BMN-111, now named vosoritide by the World Health Organization. Researchers have been developing vosoritide in hopes of one day curing achondroplasia, the most common type of dwarfism. Vice-President Dr. Wolfgang Dummer reported:

In children receiving the highest dose of 15 micrograms per kilogram daily, we observed a 50% increase in mean annualized growth velocity compared to their own natural history control growth velocity. This increase in growth velocity, if maintained, could allow children with achondroplasia to resume a normalized growth rate. More importantly, vosoritide was well tolerated in all dose cohorts and we have observed no major safety concerns to date.

Whether or not vosoritide could reduce an achondroplastic person’s increased risk for chronic joint pain, bowed legs, spinal stenosis, sleep apnea, or hydrocephalus remains to be seen.

Since many of my readers are new to the blog, I’m re-posting my article “Will We Live to See the End of Dwarfism?” about how some of us with achondroplasia feel about all of this.

* * *

Medicine has been transforming the fate of human society since the first moment someone bandaged a wound. Bearing this in mind, along with the more recent advances in genetics, I have realized for the past decade or so that there is a future, however near or distant, that promises a world without dwarfism. But what if this world arrives as soon as the next generation?

Pharmaceuticals company BioMarin reported earlier this year the start of clinical trials for a drug called BMN-111. If it ends up doing what it promises, repeated injections could transform the bone and cartilage growth of children born with achondroplasia, essentially curing them of the condition. Could this mean that I might someday belong to the last of the dwarfs?

To be clear, BMN-111 could cure only achondroplasia, the most common type of dwarfism, not the other 200+ types. (So the attention-grabbing name of this article is a tad misleading.) Dwarfism caused by growth hormone deficiency—which affected circus performer General Tom Thumb and most of the actors playing the Munchkins in The Wizard of Oz—has already been cured by hormone injections invented at the end of the last century. But 70% of all dwarfs have achondroplasia. Without us, the small number of people identifiable as dwarfs would become much smaller.

Because I’m a fully grown adult, I can’t ever cure my achondroplasia. But would I have chosen to do so if I could? Were my doctor to offer me a pill that would transform my joints and my muscle tone, allowing me to walk and stand around for longer than an hour without my feet swelling with pain, I would take it in an instant. The same goes for a pill that would endow me with more normal fine motor strength, so that I could open jars and push down sticky buttons and do all those tasks that leave me swearing and/or asking someone else for help. I would gladly have taken a pill that would broaden my Eustachian tubes so that I would stop getting ear infections every year. And I would have embraced any sort of medicine that would have widened my spinal column so that I would never have had to have a laminectomy, and so that I could cook and clean my house without back pain. All of the discomfort and inconvenience I just listed are part and parcel of achondroplasia – parts that limb-lengthening could never alter.  

But when I consider a pill that, in ridding me of all that pain, would also rid me of every physical marker of achondroplasia, I suddenly hesitate. My wrists, my feet, my skull, my face would look significantly different from the one I have. The idea of never having had to learn how best to react to being the most physically remarkable person in school, of never having undergone limb-lengthening, of never having lived in an institution with children with all sorts of serious conditions, of never having had to explain my unique history to others – it makes me have a hard time imagining an Emily Sullivan Sanford that is anything like the one I know today. My dwarfism is only part of who I am, but it has been a significant part of who I am. This is why I understand the Little People of America members who balk at BMN-111, put their fingers in their ears and chant, “Go away, go away, go away!”

We must approach the future rationally because our emotional attachment to life as we know it can lead us to delude ourselves with an unrealistic sense of control. History after all demonstrates that future generations will never know all kinds of things we treasure today. Give or take a few centuries, people in our part of the world will most certainly not face the same illnesses, speak the same language, wear the same clothes, eat the same foods, or observe the same traditions we do. Whether we’re debating the politics of Hawaiian Pidgin or that punk’s not dead, we do not get the final say on what future generations will know and what will be lost to the ages.

Identity is a construct, but a construct that is as powerful as any other. As Andrew Solomon writes, “I don’t wish for anyone in particular to be gay, but the idea of no one’s being gay makes me miss myself already.”

Granted achondroplasia is not merely a difference like a dialect or homosexuality. It is a medical condition that causes very real physical pain and health risks. Like diabetes. I can write with certainty that the vast majority of people with diabetes, while rightfully proud of the obstacles they’ve overcome, would happily rid themselves of the disease. They would celebrate never having to check their blood sugar, inject themselves with insulin, or worry about developing dangerous complications. We can safely make the same assumption for people who have to deal with migraine headaches or deep-vein thrombosis.

But let’s consider a condition that, like achondroplasia, has as many social ramifications as medical ones. I bet most people who wear glasses would gladly take a pill that guaranteed perfect vision. No more headaches, no more pressure sores on the bridge of your nose, no more wondering where you set them down, no more worrying if they break, no more bills! But would they so easily let go of their bespectacled appearance? Although he no longer needs glasses since his laser surgery, comedian Drew Carey wears non-prescription glasses to maintain his look.

I surveyed a handful of friends in Europe and the U.S., and most answered that they would indeed take a pill guaranteed to improve their vision, and also that they would never wear anything but sunglasses again. If this scenario ever becomes reality, the movement of the past 100 years to broaden beauty standards to include the bespectacled will begin to fade. The 20% of my respondents that answered, “I would wear non-prescription glasses because it’s a part of my identity,” will belong to a shrinking minority left to fend for itself. They will likely start counting the minutes until they hear something marginalizing like: “Isn’t it great you won’t have to look like a nerd anymore?”    

Once again, people with achondroplasia must admit that our distinguishing condition involves far more innate physical complications than simply needing glasses or being gay. Activist Harry Wieder bemoaned the reticence among people with dwarfism to even admit that we are disabled, and he was right to be so critical. Downplaying the pain and surgical risks everyone with achondroplasia faces is a matter of denial. But such denial is often rooted in the worry that others will overemphasize our pain, distancing themselves from us in a way all too similar to the fear and pity that fuels ableism. Such distance imposed by other minorities can break solidarity and lead to hierarchical thinking along the lines of, “At least I’m not like that!”

Anyone who reacts to the idea of BMN-111 ridding humanity of the achondroplastic appearance with a sigh of relief has a problem. It’s a problem we can never afford to ignore. The lessons of diversity awareness and inclusion are priceless. If dermatologists some day offer a cure for vitiligo, Winnie Harlow’s recent successes in the world of modeling will still have only been a good thing.

My attachment to my starfish hands, my achondroplastic nose, and my scars is not rational. But the human experience is never purely rational. And self-acceptance is an achievement like no other. Almost every person with achondroplasia has a jarring moment when they see themselves in photos or on film and are reminded that their hands are not at all slender, like most of the hands they see in photos or on film. Or that their hips sway when they walk. Or that their skulls are larger. Learning to live with the shock is a difficult but worthwhile experience. When a mother of a girl with achondroplasia wrote to me, asking about her four-year-old daughter’s future, my family awwwwwed at the photos she sent us. “I remember having an adorable little girl with a forehead like that!” my dad grinned.

I was not nearly so moved by the recently published images of celebrities photoshopped to “reimagine them with dwarfism” next to an image of Peter Dinklage photoshopped to “reimagine him without” because only their legs were modified.

The project itself is thought-provoking, but Daniel Radcliffe simply wouldn’t get into the achondroplasia club with those ridiculously long arms. And Peter Dinklage—whom GQ declared a “stud” in its 2011 Men of the Year list—would have a dramatically different forehead, cheekbones, jaw, and nose.

One of the respondents to my survey who said he would keep his glasses explained, “Not really for aesthetic reasons, exactly, though that’s part of it (and it is fun to buy glasses). But because they’re a part of my face! I’ve never considered contacts, either, come to think of it. They serve some other function, beyond utility and style, I guess.”

Similar feelings have been expressed by people who underwent surgery to remove the sixth finger on their right hand for convenience, while opting against the removal of the sixth finger on their left: “Why would I cut it off? It’s a part of me.”

Syndactyly runs in two sides of my family. One relative remarked about her child, “I was so happy when she was born to see she didn’t have those fused toes!”

To which another relative with fused toes later said, “Why? It hurts a bit more when you stub them, but otherwise, what’s the big deal?”

Replace the word “fused toes” with red hair or monolids or pale skin or dark skin or freckles or whatever intrinsic part of you might somewhere be considered unfashionable and you’ll know a little how dwarfs feel about BMN-111. As with limb-lengthening, BMN-111 threatens to out the uglier feelings some people have about our appearance. We must remember that it’s the feelings that are ugly, not the body.    

Talking out my endlessly complex thoughts about a world without dwarfism feels like moving through a labyrinth that is partly my own making. During one such recent talk, a close friend said to me, “If we could look at a version of you that never had achondroplasia, I understand that you would miss yourself and I would miss you, too.  But you would be awesome in a different way that would still be your own way, and it would be without all the pain and complications and danger.”

This is what people with achondroplasia need to hear from those who truly accept them.

 

 

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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.

 


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Will We Live To See The End of Dwarfism?

29 Mar

Hands

 

Prologue: My three-month long hiatus from blogging was due to tendon surgery I underwent in January and rare complications that arose from it. I am now gradually returning to work from sick leave and thrilled to be back.

* * *

Medicine has been transforming the fate of human society since the first moment someone bandaged a wound. Bearing this in mind, along with the more recent advances in genetics, I have realized for the past decade or so that there is a future, however near or distant, that promises a world without dwarfism. But what if this world arrives as soon as the next generation?

Pharmaceuticals company BioMarin reported earlier this year the start of clinical trials for a drug called BMN-111. If it ends up doing what it promises, repeated injections could transform the bone and cartilage growth of children born with achondroplasia, essentially curing them of the condition. Could this mean that I might someday belong to the last of the dwarfs?

To be clear, BMN-111 could cure only achondroplasia, the most common type of dwarfism, not the other 200+ types. (So the attention-grabbing name of this article is a tad misleading.) Dwarfism caused by growth hormone deficiency—which affected circus performer General Tom Thumb and most of the actors playing the Munchkins in The Wizard of Oz—has already been cured by hormone injections invented at the end of the last century. But 70% of all dwarfs have achondroplasia. Without us, the small number of people identifiable as dwarfs would become much smaller.

Because I’m a fully grown adult, I can’t ever cure my achondroplasia. But would I have chosen to do so if I could? Were my doctor to offer me a pill that would transform my joints and my muscle tone, allowing me to walk and stand around for longer than an hour without my feet swelling with pain, I would take it in an instant. The same goes for a pill that would endow me with more normal fine motor strength, so that I could open jars and push down sticky buttons and do all those tasks that leave me swearing and/or asking someone else for help. I would gladly have taken a pill that would broaden my Eustachian tubes so that I would stop getting ear infections every year. And I would have embraced any sort of medicine that would have widened my spinal column so that I would never have had to have a laminectomy, and so that I could cook and clean my house without back pain. All of the discomfort and inconvenience I just listed are part and parcel of achondroplasia – parts that limb-lengthening could never alter.  

But when I consider a pill that, in ridding me of all that pain, would also rid me of every physical marker of achondroplasia, I suddenly hesitate. My wrists, my feet, my skull, my face would look significantly different from the one I have. The idea of never having had to learn how best to react to being the most physically remarkable person in school, of never having undergone limb-lengthening, of never having lived in an institution with children with all sorts of serious conditions, of never having had to explain my unique history to others – it makes me have a hard time imagining an Emily Sullivan Sanford that is anything like the one I know today. My dwarfism is only part of who I am, but it has been a significant part of who I am. This is why I understand the Little People of America members who balk at BMN-111, put their fingers in their ears and chant, “Go away, go away, go away!”

We must approach the future rationally because our emotional attachment to life as we know it can lead us to delude ourselves with an unrealistic sense of control. History after all demonstrates that future generations will never know all kinds of things we treasure today. Give or take a few centuries, people in our part of the world will most certainly not face the same illnesses, speak the same language, wear the same clothes, eat the same foods, or observe the same traditions we do. Whether we’re debating the politics of Hawaiian Pidgin or that punk’s not dead, we do not get the final say on what future generations will know and what will be lost to the ages.

Identity is a construct, but a construct that is as powerful as any other. As Andrew Solomon writes, “I don’t wish for anyone in particular to be gay, but the idea of no one’s being gay makes me miss myself already.”

Granted achondroplasia is not merely a difference like a dialect or homosexuality. It is a medical condition that causes very real physical pain and health risks. Like diabetes. I can write with certainty that the vast majority of people with diabetes, while rightfully proud of the obstacles they’ve overcome, would happily rid themselves of the disease. They would celebrate never having to check their blood sugar, inject themselves with insulin, or worry about developing dangerous complications. We can safely make the same assumption for people who have to deal with migraine headaches or deep-vein thrombosis.

But let’s consider a condition that, like achondroplasia, has as many social ramifications as medical ones. I bet most people who wear glasses would gladly take a pill that guaranteed perfect vision. No more headaches, no more pressure sores on the bridge of your nose, no more wondering where you set them down, no more worrying if they break, no more bills! But would they so easily let go of their bespectacled appearance? Although he no longer needs glasses since his laser surgery, comedian Drew Carey wears non-prescription glasses to maintain his look.

I surveyed a handful of friends in Europe and the U.S., and most answered that they would indeed take a pill guaranteed to improve their vision, and also that they would never wear anything but sunglasses again. If this scenario ever becomes reality, the movement of the past 100 years to broaden beauty standards to include the bespectacled will begin to fade. The 20% of my respondents that answered, “I would wear non-prescription glasses because it’s a part of my identity,” will belong to a shrinking minority left to fend for itself. They will likely start counting the minutes until they hear something marginalizing like: “Isn’t it great you won’t have to look like a nerd anymore?”    

Once again, people with achondroplasia must admit that our distinguishing condition involves far more innate physical complications than simply needing glasses or being gay. Activist Harry Wieder bemoaned the reticence among people with dwarfism to even admit that we are disabled, and he was right to be so critical. Downplaying the pain and surgical risks everyone with achondroplasia faces is a matter of denial. But such denial is often rooted in the worry that others will overemphasize our pain, distancing themselves from us in a way all too similar to the fear and pity that fuels ableism. Such distance imposed by other minorities can break solidarity and lead to hierarchical thinking along the lines of, “At least I’m not like that!”

Anyone who reacts to the idea of BMN-111 ridding humanity of the achondroplastic appearance with a sigh of relief has a problem. It’s a problem we can never afford to ignore. The lessons of diversity awareness and inclusion are priceless. If dermatologists some day offer a cure for vitiligo, Winnie Harlow’s recent successes in the world of modeling will still have only been a good thing.

My attachment to my starfish hands, my achondroplastic nose, and my scars is not rational. But the human experience is never purely rational. And self-acceptance is an achievement like no other. Almost every person with achondroplasia has a jarring moment when they see themselves in photos or on film and are reminded that their hands are not at all slender, like most of the hands they see in photos or on film. Or that their hips sway when they walk. Or that their skulls are larger. Learning to live with the shock is a difficult but worthwhile experience. When a mother of a girl with achondroplasia wrote to me, asking about her four-year-old daughter’s future, my family awwwwwed at the photos she sent us. “I remember having an adorable little girl with a forehead like that!” my dad grinned.

I was not nearly so moved by the recently published images of celebrities photoshopped to “reimagine them with dwarfism” next to an image of Peter Dinklage photoshopped to “reimagine him without” because only their legs were modified.

The project itself is thought-provoking, but Daniel Radcliffe simply wouldn’t get into the achondroplasia club with those ridiculously long arms. And Peter Dinklage—whom GQ declared a “stud” in its 2011 Men of the Year list—would have a dramatically different forehead, cheekbones, jaw, and nose.

One of the respondents to my survey who said he would keep his glasses explained, “Not really for aesthetic reasons, exactly, though that’s part of it (and it is fun to buy glasses). But because they’re a part of my face! I’ve never considered contacts, either, come to think of it. They serve some other function, beyond utility and style, I guess.”

Similar feelings have been expressed by people who underwent surgery to remove the sixth finger on their right hand for convenience, while opting against the removal of the sixth finger on their left: “Why would I cut it off? It’s a part of me.”

Syndactyly runs in two sides of my family. One relative remarked about her child, “I was so happy when she was born to see she didn’t have those fused toes!”

To which another relative with fused toes later said, “Why? It hurts a bit more when you stub them, but otherwise, what’s the big deal?”

Replace the word “fused toes” with red hair or monolids or pale skin or dark skin or freckles or whatever intrinsic part of you might somewhere be considered unfashionable and you’ll know a little how dwarfs feel about BMN-111. As with limb-lengthening, BMN-111 threatens to out the uglier feelings some people have about our appearance. We must remember that it’s the feelings that are ugly, not the body.    

Talking out my endlessly complex thoughts about a world without dwarfism feels like moving through a labyrinth that is partly my own making. During one such recent talk, a close friend said to me, “If we could look at a version of you that never had achondroplasia, I understand that you would miss yourself and I would miss you, too.  But you would be awesome in a different way that would still be your own way, and it would be without all the pain and complications and danger.”

This is what people with achondroplasia need to hear from those who truly accept them.  

 

 

 

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Should You Be Allowed To Hide From Google?

18 May

Big Google brother ?(Image by Alain Bachellier used under CC 2.0 via)

                                                                                     

The European Court of Justice ruled against Google this week in upholding an individual’s legal right to be forgotten. That is, while newspapers and most online sites will retain the right to publish information about me (and anyone else living in the European Union), I can now petition Google to remove its links to such sites so that they will no longer appear in search results for my name. The ruling has a good deal of support here in Europe, but Google, Wikipedia and newspapers across the Atlantic are crying censorship.

I personally don’t plan on making such a request any time soon, but I am disappointed that both the ruling and Google’s opposition to it fail to distinguish between public figures and private citizens. Under U.S. law, public figures are defined as those involved in public affairs (politicians, officials, etc.); those who actively seek public attention in order to influence the discourse of one or more issues (activists, pundits, outspoken celebrities or entrepreneurs); and those involved in issues of public interest whether or not they seek attention (criminals, all celebrities ever, spouses and relatives of politicians and celebrities). Public discourse benefits from search engines being able to produce a comprehensive collection of resources about public figures. Yes, this will always result in a plethora of worthless vitriol, but as unfortunate as this is, public figures must respect everyone’s right to hold and express free opinions about them, whether someone thinks that George W. Bush is a fascist or that Jeff Bezos is a fascist. But I believe private citizens deserve greater protection.

While we can all control what we publish about ourselves on the Internet, we cannot control what other people publish about us. Photos often require our permission, outright lies can be punished by slander laws, and children are also heavily protected from exposure by anyone other than their parents.  But private citizens usually have fewer resources for combating defamation and slander. And there are no laws against a friend of a friend outing you as gay on their blog or blabbing about your medical history on Tumblr. 

While it may be crucial for certain people – for example, weapons retailers or nursery school employers – to know if you have a history of mental illness, such information is otherwise considered strictly confidential by law. The Health Insurance Portability and Accountability Act (HIPAA) of 1996 imposed heavy punishments for any medical professional who breached doctor-patient confidentiality at the height of the AIDS crisis. But in the Age of Google, any tangential acquaintance of yours with a blog and a tendency toward loudmouthery can tell the world about any diseases you may have. Google is fighting for their right to include such gossip in the piecemeal biography that is their search results for your name, available to pretty much everyone on earth.

Particularly in the case of medical minorities, even those bloggers with the best intentions can be atrociously revealing.  Most of us know the embarrassment of our parents posting our baby pictures to Facebook, but in my research for issues of disability, I’ve come across countless parents posting public confessionals like:

My daughter was heart-broken to learn today that she’s the infertile one!  

My husband wanted me to put her up for adoption because he was just too ashamed.

I wonder if anyone could ever love him looking the way he does.

Any parent facing terrifying conditions or social adversity with their child deserves a place to vent their deepest fears. But there’s a difference between opening up in a counseling session and turning the Internet into your therapy couch. Discussing such fears in books and documentaries can contribute to the greater debate on disability, especially when it leads to examining what exactly instills such fears in parents. And too much parental openness is certainly preferable to the widespread shame of previous centuries that led so many to abandon their disabled children. But disabled children will grow up someday and may not want their parents’ interviews following them wherever they go. What young adult wants their friends or employers or potential lovers accessing statements like those above by merely entering their name into the search field of the world’s most popular website?

And while parents may readily take down such comments at upon request, what about acquaintances who gossip about you online? (Remember the Mark Zuckerberg character blogging about his ex’s bra size in The Social Network?) I’ve dealt with friends of friends trashing my medical experiences online by writing my own blog entries about the incident and the issues it raised, but I don’t believe everyone should be required to. Responding to a breach of privacy not by defending yourself but by simply removing yourself from the grid should be the right of any private citizen who’s ever been humiliated for personal information that truly affects no one but their closest friends and family. One of the very foundations of bigotry is the widespread belief that freaky people owe it to the world to answer any question we have about their lives.   

My favorite aspect of the Court ruling is the very thing Jimmy Wales bemoans: “A very strict reading of the law leads to this very bizarre conclusion that a newspaper can publish information and yet Google can’t link to it – it makes no sense at all,” said the Wikipedia founder. It makes sense in that, by untangling your company’s website from your high school’s website, the new ruling endows us with the ability to compartmentalize. This ability—to separate your work life from your social life, or your medical condition from your love life when you have no intention of becoming a public figure—seems like a right well worth protecting.

Sherri G. Morris writes of the time, back in the Internet 1.0, when she had met a great guy through her local chapter of Mensa. After a few dates, he googled her name and immediately discovered she belonged to a support group for people with intersex conditions. He and Morris eventually married, but there are undoubtedly many members of minority support groups who would prefer to restrict the fact of their membership to visitors of the group’s homepage. And, when it comes to private citizens, I’m not convinced such a restriction would qualify as censorship.

To compartmentalize, to reveal certain information about yourself at your own pace, is something which we all value in our lives, and which Google has been eroding with its every update. Until now.

 

 

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How to Help Your Doctor Get the Job Done

23 Mar

(Via)

 

If you’ve ever had to undergo strings of medical tests or lengthy procedures, you know that there are plenty of doctors, nurses and technicians out there who could do with a few lessons in etiquette and bedside manner. I could spend years on this blog documenting every moment I was snapped at, interrupted, or made to feel like a nuisance while I was fretting about test results or mounting pain. It would take me a decade to do justice to all the horror stories I’ve heard from friends and fellow patients.

But the poor manners of all those (probably overworked) professionals who made a tough situation worse render the kindness of others all the more dazzling. (I love you, Nurse Wilson!) And it’s crucial to bear in mind that the patient’s version of things is only one side of the story. Medical professionals rarely get to see people at their best – their job is to witness and inflict pain all day. They must remain objective while navigating a sea of misery and fear, where not everyone claiming to be severely sick really is.

In order for doctor and patient to have the best possible experience, both have to be aware of what the other requires. Which is why I’m handing over the mic to Dr. Leana Wen, who’s penned an excellent article called “The 10 Types of ER Patients” this week. Her pieces of sound advice include:

No. 3: The Googler. The Internet can be a powerful tool for empowering patients, but please use it responsibly. Looking up your symptoms yourself might turn up that you have a brain tumor when you have food poisoning or that you are pregnant when you have belly pain (and you’re a man). Use the Internet to help you understand your diagnosis and treatment and to come up with questions—not to diagnose yourself.

No. 4: The “Pain All Over” Patient. We call it the “positive review of systems” when you say yes to everything we ask. Headache? Chest pain? Shortness of breath? Fatigue? Muscle aches? Yes, yes, of course, yes. Some illnesses really affect many parts of the your body, but more often than not, patients will say yes to convince us they are ill. We know you aren’t well, so tell us the truth. (If you don’t, you run the risk of undergoing unnecessary testing.) If everything hurts, try to tell us your story. When did you last feel normal and well? What happened then? And please don’t exaggerate. If you say that your pain is 15 out of 10, but you’re eating lunch and texting on your iPhone, it’s hard for us to calibrate your symptoms.

Head over to Slate to read the whole thing.

 

 

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What Makes A Cast Look Cool?

23 Feb

LegsOrthopedic casts haven’t changed much in 50 years, until now. Engineering student Jake Evill of New Zealand has designed the Cortex cast, a brace made from 3-D printing. While all casts could effectively be described as exoskeletons, the Cortex looks like one. Its lattice structure allows for ventilation, which Evill advertises as its greatest asset. The Cortex is still at its conceptual stage, but, as with almost all new technology, reviews in the media have been pulsing with excitement.

The problems of plaster and fiberglass casts are well known to anyone who’s had to wear one. They’re fairly heavy and very bulky. Worst of all, they make your skin itch like the dickens and you are forbidden from using any implements to scratch because the smallest cut can become badly infected in the dark, suffocating conditions damp with sweat and dead skin. I had to wear casts on both legs after two tendon surgeries and once after having Ilizarov fixators removed. The itching alone was bad enough to make me wish I had the fixators back on.

Anything that claims to be lighter and breathable is a very attractive proposition. But while the Cortex website boasts that the cast is waterproof and therefore perfect for bathing and swimming, this probably means that there is no cloth involved. The cloth lining between a traditional cast and your skin contributes to the itching, but it’s there to prevent abrasion. Watchmakers, jewelers and BDSM professionals all know that any material other than cloth or leather can pose serious risks to human skin.

And the claims that the innovative appearance of the new cast is stylish? What exactly makes a cast stylish? While I could see goths maybe being partial to the Cortex if they could order it in black, reviewers seem to be fawning over the look of it simply because it’s new. And the promotional photo for the Cortex features a well-toned, scarless, unbruised arm that looks a bit too healthy to contain a broken bone.  (I half-expect the owner of the model’s fist to be shouting, “BY THE POWER OF CORTEX!”) 

Style is all about what you do with what you’ve got.  Fiberglass casts come in assorted colors. I had hot pink ones while performing in a school play and ended up enhancing one dream-like scene lit only by ultra-violet light. When I had neon green casts, friends painted my toenails to match. And the good old tradition of letting your loved ones cover your limbs in graffiti is worth mentioning. A friend who is a professional painter adorned the bottoms of my feet with elaborate sunflowers.

Then again, some casts do not conceal only injuries. A young friend of mine once stuck a chunk of steak down her cast in order to get out of having to eat it before dessert. She managed to retrieve only part of it after dinner – the rest tore away and remained lodged deep in the plaster caverns enveloping her arm. Her parents remained unaware for days until the entire house began to reek of rancid meat. With the new cast design, families with deceptive children need not fear such hazards.  The Cortex offers not only porousness but transparency!

 

 

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Does It Matter If It’s Genetic?

16 Feb

Photo 02-07-14 12 29 21(Image by Eduardo Unda-Sanzana used under Creative Commons license via)

 

There is an argument gradually gaining momentum in the LGBT movement: “So what if being gay is a choice?” Rather than lecturing social conservatives that homosexuality is an inborn trait and not a chosen lifestyle, we should ask them what’s so bad about two consenting adults loving each other. With bisexual, pansexual, and genderfluid identities becoming more visible, and all sorts of people becoming more open to experimenting, who really cares if any of it is a choice?

It’s an important question in the broader debate about sex and gender. And it forces me to question the parameters of this blog.

Painting On Scars is founded on the rights of people who are viewed as minorities based on qualities they have no choice about: gender identity, sexuality, ethnicity, nationality, class background, physical traits, and mental abilities. This foundation is built on my own minority status being indisputably determined by factors beyond my control. There is no doubt whatsoever that I was, as Lady Gaga hollers, born this way.

And when it comes to confronting bigotry, there is something particularly painful about being belittled for something you have no choice about. All of us can feel insecure about the decisions we make, but being told that you’re seeking work in the wrong field or that you talk too loud on the phone is still far less harrowing than being told that your natural appearance is universally repulsive or that your gender makes you intellectually or emotionally inferior. Every one of us wants to be accepted for the way we were born because a rejection of it feels like a rejection of our very lives. As autism activist Jim Sinclair explains:

When parents say, “I wish my child did not have autism,” what they’re really saying is, “I wish the child I have did not exist and that I had a different, non-autistic child instead.” Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. That your fondest wish for us is that someday we will cease to be, and strangers you can love will move in behind our faces.

For this reason, Painting On Scars examines the existence of minorities who are born this way and the myriad reasons why any of us still struggle to accept them. (More on the complexities of parenting disabled children here.)

However, the born-this-way rubric is not always helpful. What about the explicit decision to not conform? What about the human right to the pursuit of happiness? It seems only natural—for lack of a better word—to defend alternative traits and behaviors that are very much a choice but do no harm. Women who don’t wear makeup. Filmmakers who dare to feature minority accents. People who want to preserve their parents’ cultural traditions rather than assimilate for assimilation’s sake.  Men who don’t identify as transgender but still very much like wearing dresses. Objection to these choices usually stems from a rigid belief in homogeneity or simply a difference in taste. Such objections make it clear to me as a blogger that as long as a difference doesn’t cause real harm, it is worth protecting from harm.

And conversely, I tend to defer to others when it comes to minority traits that people have little choice about but that do cause a good deal of harm: personality disorders, psychosis, sexual attraction to children, paranoia, trauma, suicide, or anything that precipitates emotionally abusive tendencies. I research these issues voraciously, not only because I have personal experience with many of them, but because they raise questions about human rights and individual freedom, as well as the greater good and personal safety. (The pro-mia and pro-ana movements, for example, argue that any attempt to treat or cure people with eating disorders qualifies as oppression rooted in narrow-mindedness.) Yet I refrain from opining about these issues publicly because my knowledge of them is as simplistic as they are complex.

Whether to change society or change oneself is a persistent predicament that accompanies every stage of life. When exploring the answer as it applies to minority issues, I keep coming back to the same question: Who suffers more in the change?  Humans have repeatedly proven to cause less suffering when we accept body diversity, intellectual disabilities, LGBT identities, and gender equality than when we oppress them.

Of course, what constitutes oppression and what constitutes acceptance is sometimes disputable. Alex Andreou argues this week in The Guardian that the current search for the gene for homosexuality is quite harmful. While LGBT activists have traditionally opposed the idea of homosexuality as a choice to combat those who argue for a cure through therapy, LGBT critics of the genetic research fear that discovery of a gene for homosexuality will lead to its elimination. Those of us whose conditions are genetically determined and socially marginalized have been acutely aware of this problem not just since the advent of the Human Genome Project 30 years ago, but since eugenicists began sterilizing all sorts of peoples over 100 years ago. In democratic societies where governments no longer dare to be too vocal about medical decisions regarding minorities, everyone still fears the coming of the day when insurance companies inform expecting parents that they will not cover children who will cost more. Because the existence of minorities precludes the efficiency of a one-size-fits-all system, we will always cost more.

In the spring of 1994, I was headed into the operating room to have my Ilizarov fixators removed. While prepping for surgery, one of the members of the surgical team excitedly told my mother, “Have you heard the news about achondroplasia? They found the gene! We can test Emily for it!”

My mother signed a release allowing for them to perform the test during the operation. Several weeks later I received a letter confirming that my fibroblast growth receptor gene 3 had the achondroplasia mutation. My first reaction was, “No shit. Who cares?”

I had been officially diagnosed with achondroplasia on my third day after birth, though admittedly, such an early diagnosis back in the 1980s was a stroke of luck. A girl with achondroplasia who later became my best friend had been born at the same hospital six months earlier, so the doctors recognized our similarities and ordered x-rays on my limbs. My achondroplasia was obviously a result of nature, not nurture.

Then again, in olden days dwarfism was often thought to be caused by mothers with loose morals. I myself had once asked my mother if perhaps I got achondroplasia because of the decisions she had made about the birthing process. (I had just watched Look Who’s Talking and had learned a lot about the pop culture understanding of what goes into having a baby.) The gene for achondroplasia explained how I got it, how I could pass it on, and lay rest to any modern blame-it-on the-mother mindset that might suspect it was because of aspirin or salami or cinnamon. Such information can—but does not have to—affect your sense of self.

A few years ago a woman living in the U.S. contacted me because her two-year-old daughter had been diagnosed with achondroplasia. The girl’s grandparents lived in another country and had steadfastly dismissed the diagnosis. “Americans are famous for over-diagnosing every little thing,” they shrugged. “She’ll grow out of it!” (Pun intended?)

A friend from the same country explained to me that disabled people there generally have few support networks and even fewer opportunities for independence. Perhaps the grandparents’ refusal to believe in achondroplasia stemmed from their fierce desire to remain hopeful about her future.

Would running a genetic test finally convince them to accept reality? When I was born, my parents and I benefited greatly from the dwarf rights movement of the 1970s and 80s, which had emerged due to the egalitarian spirit of the times that indulged in civil rights and celebrating diversity. As with the gay rights movement, millions of supporters showed that they did not need to see the results of genetic testing in order to justify and defend a minority’s right to exist and be accepted. If they could do it, so can we.

 

 

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“Fashionista Has Leg Amputated So She Can Wear High Heels”

2 Dec

L0066938 Illustration showing treatment of a clubfoot Credit: Wellcome Library, London. Wellcome Images images@wellcome.ac.uk http://wellcomeimages.org Illustration showing treatment of a clubfoot 1806 Memoria chirurgica sui piedi torti congeniti dei fanciulli, e sulla maniera di correggere questa deformità / Antonio Scarpa Published: 1806. Copyrighted work available under Creative Commons Attribution only licence CC BY 4.0 http://creativecommons.org/licenses/by/4.0/

(Image from Wellcome Images used & altered under CC)

 

Or so The New York Post would have you think.

21 year-old Mariah Serrano was born with a club foot.  By the time she was a teenager, she faced increasing chronic pain and her doctors strongly advocated amputating and replacing her leg with a prosthetic one. Now an assistant designer for American Rag and author of the blog Confessions of a One-Legged Fashionista, she recently shared her story with the Post:

Serrano struggled to look like the other girls in her high school who often called her “gimpy.”

“I felt silly in pictures, I was the only one in these shitty little ballet flats,” she recalled.

“I had to wear all sorts of braces. It was uncomfortable and frustrating because they weren’t solving the problem and I often felt embarrassed.”

The glamour girl wore patterned knee highs and flashy tights to mask her deformity. She even dyed her hair pink to distract people from staring at her leg. She eventually stopped going to classes and was home-schooled.

“Kids are mean,” she said. “It made things very hard.”

“A lot of times I felt left out because I loved to dance and go out.”

But even more mortifying for the teenage girl, was being forced to wear sneakers to prom.  “I was really devastated in the mall,” she recalled, after shopping for four hours to find a chic shoe.

The article never mentions any medical purpose for the amputation. Serrano is only quoted as hating the limited number of footwear options that had been available to her prior to the operation. The story ran four days ago and was quickly picked up the British tabloids.  And Serrano is not pleased.  She explains on her blog:    

I did not choose to cut my leg off so I can wear high heels, I had my leg amputated because I was very sick and the quality of my health and life were suffering. Doctors do not welcome the idea that you are unhappy with your footwear choices, so you should remove body parts.

This event was a real decision that I took very seriously. It was a decision my family and I made together, so that I would be able to live my dreams, and not mind you, dreams of footwear, but dreams of waking up and going about my life not in chronic pain.

I think it’s safe to say that The New York Post is not a feminist crusader on the issues of body image and beauty standards.  So why then would they decide to warp Serrano’s words to feed the image of the fashionista lifestyle as a vile instigator of self-mutilation?  The story of a young girl simply but bravely electing to trade chronic pain for a prosthesis is severely lacking in vitriol. This means there is no surefire guarantee that it will unleash a deluge of jaw-dropping, eye-rolling, and catty comments from readers about the girl in question.  That guarantee is essential to the business the Post is in.

Serrano is hardly the first individual to be misrepresented by the tabloids.  But who’s keeping the tabloids going by hungering after such headlines?  It’s this hunger that drives journalists across the spectrum to emphasize the most soap opera-like elements of a person’s life story.  I’ve seen the most loving, supportive families with disabled children portrayed as walking tragedies based on a few of their more emotional quotes taken out of context.  This approach knows that readers and viewers will consequently feel sorry for the pathetically confused freaks, and good about themselves.  Not unlike the mean classmates Serrano cites from her high school days.

So if anyone is interested in ending the tabloids’ tradition of tearing people’s personal lives to shreds, we can curb their sales by curbing our desire to use bits of information about people we don’t know as an easy way to prop ourselves up. Of course this is asking a lot, and so, once again, we must decide which is harder – altering the way we think or altering our bodies?

 

 

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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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New Rights for Intersex Newborns in Germany

25 Aug

Germany has become the first country in Europe to allow parents to check one of three boxes for gender on their child’s birth certificate: “male,” “female,” or “blank.” The new option is intended to accommodate the parents of intersex newborns; i.e., those whose reproductive or sexual anatomy does not appear to fit the traditional definitions of male or female. The children will be allowed to choose “male” or “female” later in life, but they will not be required to. This will all go into effect November 1st.

While the law says nothing about gender ID in passports, equality activists are celebrating it as a tremendous step forward. According to Silvan Agius of the International Lesbian, Gay, Bisexual, Trans and Intersex Association, the European Union has been slow to act on issues of gender identity. “Germany’s move will put more pressure on Brussels,” Agius told Der Spiegel. “That can only be a good thing.”

However, not everyone in the intersex community is celebrating the idea of a third gender box. Creating a new category, they argue, is to give in to the idea of narrowly defined categories. Instead of turning the gender binary into a triad, why not loosen the definitions of “male” and “female” to include those with all sorts of bodies? Many people with intersex conditions have a perfect sense of belonging when it comes to gender – they only feel alienated when others insist they don’t belong.

And while they often cooperate politically, intersex people should never be confused with transgender, transsexual, or genderqueer people. The Intersex Society of North America states, “Most people with intersex conditions come to medical attention because doctors or parents notice something unusual about their bodies. In contrast, people who are transgender have an internal experience of gender identity that is different from most people.” The ISNA’s history of intersex offers much information about the long medical tradition, and resulting problems, of conflating and confusing the two.

Professor Alice Dreger explains that cases wherein intersex individuals also qualify as transgender because they elect to transition from the gender assigned to them at birth—this is essentially the plot of the 2002 Pulitzer Prize-winning novel Middlesex—are quite rare. Dreger notes, “Far more often, the concerns of intersex and transgender people represent opposite sides of the same coin: intersex people get surgeries they don’t want, and transgender people can’t get the surgeries they do want.” The surgeries many intersex people regret having undergone in childhood are primarily cosmetic, removing or adding tissue only for the sake of “normalizing” the appearance of their genitals, and at the expense of sensation and function.

Another all too common problem is the concealment of the patient’s intersex condition by her parents and doctors, leaving her unaware for as long as possible and discouraged from asking the questions she might begin to have about her anatomy. In her essay “Twisted Lies,” Sherri G. Morris writes that not finding out until college that you are without a uterus can be rather upsetting, to say the least.

As for the well-known term “hermaphrodite,” it is inaccurate at best and defamatory at worst. The word represents the idea of one person being anatomically both male and female, and this idea is a purely mythological one. Because it is physiologically impossible. As Dreger points out:

…the only way you could be born with “both sets of genitals” is if you had two bottoms. The clitoris and the penis are homologues—they are the same organ developmentally—so you get one or the other, or one in-between organ. Similarly, the labia majora and the scrotum are homologues—so you get either a set of labia majora, a scrotum, or something in between. But you can’t have all the female parts (clitoris, labia majora, etc.) and all the male parts (penis, scrotum, etc.) on one person…

What people mean when they say a person “was born with both sets of genitals” is that a child may be born with a phallus that looks a lot like a penis plus a vagina (the tubular organ that goes from the outside of the body towards the uterus, if there is a uterus). This can happen because of hormones, in conditions like congenital adrenal hyperplasia and partial androgen insensitivity syndrome. But to say that gives you “both sets of genitals” is to pretend that somehow all that matters to males is their penises and all that matters to females in their vaginas. In fact, many of us women also care about our clitorises. (For that matter, many men care about their scrotums.)

Unfortunately, sick fascination with the hermaphrodite is utterly pervasive today. Comedians of all stripes, from South Park to Flight of the Conchords, have yuk-yukked over the idea of a person with both sets of genitals being able to have intercourse on their own, while artists have done their fair share of poking at and playing with the myth. (See here for an intersex woman’s take on Middlesex.)

On this issue the ISNA is emphatic: “The terms [‘hermaphrodite’ and ‘hermaphroditism’] attract people with sexual fetishes and fantasies that, frankly, we as a patient advocacy organization are not interested in hearing from.” They therefore advocate expunging any terms related to “hermaphrodite” from all medical literature:

We think it is much better for everyone involved when specific condition names are used in medical research and practice… While some intersex people seek to reclaim the word “hermaphrodite” with pride to reference themselves (much like the words “dyke” and “queer” have been reclaimed by LBGT people), we’ve learned over the years it is best generally avoided, since the political subtlety is lost on a lot of people.

Meanwhile, in an Op-Ed piece appearing yesterday in Spiegel International, Agius argued, “…real progress for intersex people is not measured through the number of available labels but through an end to the human rights breaches currently being inflicted.”

Indeed, the new German law is just the tip of the iceberg. Considering that one in every 2,000 infants is born with an intersex condition, shame-induced secrecy continues to be an abysmal problem. The rights and concerns of those with intersex conditions receive far too little attention. (I was completely uninformed until I met Dreger ten years ago at the conference Surgically Shaping Children.) Whatever the legal specifics, Germany’s new law will hopefully promote awareness above all else, and in more ways than one.

 

 

 

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Doctor Tries to Be Hip And Misses

21 Jul

spine(Image by Katie Cowden used under CC license via)

 

Fifty-five year-old Terry Ragland of Tennessee recently sought medical attention for lower back pain at her local orthopedic center. She was introduced to Dr. Timothy Sweo, who ordered x-rays. After analyzing the results, Sweo concluded that the pain was caused by a curve in the spine called lumbar lordosis. He delivered the diagnosis to the patient by saying plainly, “You have ghetto booty.”

Lumbar lordosis is a severe curvature of the lower spine most visible from the side and it can be caused by a variety of a factors. “Ghetto booty” is, according to the most popular Urban dictionary definition, “a term used when you see a girl with a firm, big, tight packed ass. {Most black girls have ghetto booties}.” In other words, it’s slang for simply having a big butt.

For a medical professional to use the term is fantastically patronizing at best. For a white male medical professional to use racially-charged sex slang with a black female patient he has only met once before is jaw-droppingly gauche. His attempted apology to Ragland via letter does not help his case: “I was trying to take a technical conversation regarding your lower back and make it less technical.”

Presuming orthopedic patients are unable to comprehend medical terms like “lumbar lordosis” is ludicrous. After a month into my first limb-lengthening procedure at age 11, I could explain the difference between lordosis and scoliosis, a corticotomy and an osteotomy, and I could name every bone in the human body. I wasn’t exceptional – I just wanted to understand the world I was living in, like every one of my fellow pediatric patients. Priscilla Alderson’s excellent book Children’s Consent to Surgery presents overwhelming evidence that child patients are far more aware than adults tend to give them credit for. And Ragland is not a child.

“It says to me that he doubts what type of intellect I have, how intelligent I am to be able to understand what he conveys to me in a medical term,” Ragland told reporters.

While Sweo’s condescension comprises a particularly stunning mix of nasty prejudices, he is hardly the first doctor to speak disrespectfully to a patient. Medical specialists are renowned for being scientifically brilliant but socially inept. After making you sit in the waiting room, sometimes for several hours, they swoop in, keep their eyes on your body or the floor, bark a few questions at you, rattle off some orders for the nurse to take down, and swoop out again.  The patient is supposed take solace in the fact that it is all a sign of how important the doctor is.

Since this stereotype has become so pervasive, some medical professionals do make earnest attempts to shatter it, but their success varies. Some try through their body language and demeanor to give you the sense that they are genuinely listening and care about your all-around well-being. Others try by jamming a few blunt jokes into your narrow time slot. It gives you the sense that they’ve just watched Patch Adams and decided that being a clown is the perfect defense against being accused of coldness, so let ’er rip! Your body, your condition and your diseases are hilarious!

Years ago I attended a conference where an orthopedic specialist did a presentation on achondroplasia and said with a smile, “The short bones cause the average-length muscles on achondroplastic people to bunch up so that they look like the Michelin Man!”  He clicked forward to a slide featuring a list of achondroplastic symptoms with “Michelin Man look” featured at the top.  He was obviously very proud of having come up with this description.

I was the only person in the room with achondroplasia, and I had to kick my friend sitting next to me because he couldn’t stop giggling at the surgeon’s cluelessness. The Michelin Man?

Indeed, the most exasperating aspect of the Dr. Sweo case is that he appears to genuinely believe that his comments might have been helpful. Usually it is easier to engage in productive discourse with someone whose intentions are good than with someone who aims to hurt. But in light of his oblivious apology, it seems Ragland has a better chance of getting through to other, more perceptive doctors via the media than to Sweo via complaint.

I have lumbar lordosis.  It’s one of the primary symptoms of achondroplasia and it’s why I had to undergo spinal surgery last year.  I could have crashed this site with a list of all the off-putting doctors and healers I encountered, as well as the sarcastic jokes my closest friends came up with to keep me sane.  As Ragland files a formal complaint with the Tennessee Department of Health, there will inevitably be some backlash about PC culture gone mad and minorities being too sensitive and humorless.  But more power to her for sticking up for herself, and for patients everywhere.

 

 

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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.

 

 

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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.

 

 

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