Tag Archives: Internet

What Do We Want? Visibility!

8 Jun

 

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

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

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

Indeed.

 

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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.

 

 

Body Image Part IV: My Choice and Your Choice Entwined

24 Jun

Copyright Folke Lehr(Image ©Folke Lehr)

 

I began The Body Image Series with this question: If we were fully convinced that no one else cared one bit what we looked like, how much would we care?  Would we have any reason to envy conventionally attractive people?  Would weight loss have anything to do with waist size?  Would limb-lengthening still touch on the idea of “blending in”?

 ***

Ten years ago, I attended the premiere of HBO’s Dwarfs: Not A Fairy Tale along with the other subjects of the documentary.  Upon seeing me, one of the men with achondroplasia asked his friend, “What’s she doing here?  She’s not a dwarf.”

“She had limb-lengthening surgeries to make her taller,” his friend murmured.

 “What?!” he exclaimed. “She cheated!”

I felt myself blush before I could think of what to say.

Immediately, a woman with diastrophic dwarfism, the shortest of all of us, turned to me and said, “I’m on your side, Honey.  No way did you cheat.”

Part of me finds it hard not to laugh when others dismiss limb-lengthening on dwarfs as a “quick fix.”  Breaking bones, stretching them over a three-to-five-month period and then waiting for them to heal for another ten months is not exactly comparable to a boob-job done over the weekend.  Then again, you’d better have a damn good reason to be willing to go through something so intensive and risky.  So, did I do it to function better or, as a former president of Little People of America insisted, to “blend in”? 

I did it to access public facilities—desks, shelves, cars, bikes, kitchen counters, cash registers, ATMs, exercise equipment—without any modifications.  I did it to use public seats—classroom chairs, restaurant chairs, theater seats, train seats, plane seats, toilets, friends’ furniture—without needing foot stools to keep my legs from dangling and falling asleep.  I did it to correct some of my lordosis, so that I wouldn’t need to carry backrests with me to every desk chair I sat in.  I did it to have the extra leverage enabling me to lug more around: bigger suitcases, bigger shopping bags, bigger backpacks, bigger children.  I did it to take bigger steps when walking, so I could cover more ground before I got tired.  I did it so that my weight would be slightly more evenly distributed, making spinal compression less of a danger.  I did it to stop straining to reach the back of my head when brushing my hair.  I did it because the patients I met who had done it were just as happy as those who had not.  Looking back on it all, this was definitely reason enough for me, regardless of whether or not it is for others.  But I can’t just leave it at that.

In my last post, I argued why there is no right way to hate your body.  In my experience, you can take dramatic measures to alter your body without hating it.  Indeed, the work you put into it can and should be an act of love, not desperation.  The night before my first limb-lengthening surgery, I kissed my old legs goodbye.  I was willing to let them go, but I kissed them all the same.  Yet many if not most outsiders assume that dwarfism is a visible difference the patient must want to erase.  After all, trying to argue that you don’t want to blend in, even though you will blend in, sounds like you’re trying to circle a square. 

So why not just say that limb-lengthening was my personal choice and my choice doesn’t affect anyone else?  But it does.  By blending in, I automatically relieve myself of a good deal of prejudice, of stares, of awkward reactions.  I have fewer questions to answer from people on the street and fewer chances to educate them.  By blending in, I’m breaking ranks with the dwarf community to some degree.  That’s nothing to sneeze at when considering that before the Americans with Disabilities Act of 1990, dwarfs had an unemployment rate of 85% in the U.S. all because of lookism.  By blending in, I am contributing to the trend that may make limb-lengthening a fashion for people with dwarfism.  Both politics and beauty standards measure strength in numbers. 

In the late 90s, my first femur surgery was filmed for a feature about limb-lengthening on the American news show 20/20.  The interviewer asked a 12 year-old patient with dwarfism, “Did you do it to look normal or to function better?”

Without missing a beat, the boy answered, “So that I could function better.  I don’t care how I look.  I just want to do what everyone else can.” 

Sitting at home watching, I raised my fist in solidarity and whispered, “Right on, kid.”

In the follow-up commentary, Connie Chung reported, “He has since finished the procedure to combat his dwarfism.”

I shot up in my seat in disbelief: “COMBAT?!” Was that the automatic assumption?  I wasn’t in a battle against my dwarfism, and obviously neither was this patient.  I was working with my body, not against it!  I realized then that it was important that others knew this if they were going to know that I chose limb-lengthening.

We may someday live in a world in which every candidate for limb-lengthening makes the same decision I did and in doing so, makes the world a less physically diverse place.  I will accept such a world, since my own efforts to function better have helped contribute to it.  But I won’t make any arguments advocating such homogeneity.  If my dwarfism and limb-lengthening have taught me anything, it is that it’s far more important for me to argue that beauty is about so much more than blending in. 

Deep down inside, every one of us wants to be conventionally attractive to some degree, because life seems easier that way.  We love the idea of throngs of people admiring us, envying us, falling hard for us at first sight.  It makes us feel fantastic on a visceral, heart-thumping level to be praised for our looks.  But if everyone agrees that there’s more to love and romance than conventionally good looks, what is the point of having broad appeal?  During the years when my curly hair reached my backside, I enjoyed the compliments but they were always the same, regardless of whether they came from friends or strangers.  My short, round achondroplastic hands, meanwhile, have garnered a lot more attention to detail.  My dad always called them “starfish hands.”  A guy in college examined them and disagreed: “They’re Maggie Simpson hands.”  Another amended it with a giddy squeal, “They’re finger-painting hands!”  When I began my final limb-lengthening procedure, a guyfriend in high school nicknamed me “Legs” because I had the most expensive pair around.  Who needs broad appeal when you have genuine affection?  What better proof is there of such affection, of people’s capacity to look beyond convention than their fearlessly falling in love with features they’ve never seen before?

If I deeply regretted having dwarfism, then limb-lengthening would indeed be an extreme measure taken to offset severe personal insecurity, and that would be a major cause for concern. Hating my looks so profoundly would impact other dwarfs’ perception of their own looks.  This is why I blog.  I don’t want to live in a world where anyone is pressured to change their body just to be accepted, and I don’t want my story to be misused to contribute to the forces pushing the world in that direction.

This is not to say every person who is born on the margins should turn their life into a 24-hour political cause.  Trans individuals should never have to answer invasive questions about their bodies any more frequently than cis individuals should.  LGBT people should never be pressured to come out.  Black Americans shouldn’t have to put up with strangers and acquaintances trying to touch their hair all the time.  The right to privacy is a human right. Your sex life, your income, your medical records, and your body are all matters you shouldn’t ever have to submit to anyone’s microscope if you don’t wish to.  But if we do open our mouths, we have to take responsibility for the consequences.   

When I choose to talk about my body and my choices, it feels to me like I’m talking only about myself.  But others are listening for how it all affects them.  If they don’t care about me personally, it’s their only reason for paying attention.  It’s the only reason we read novels and newspaper articles and blogs about strangers’ lives.  We’re searching for something we can relate to, and if we can’t relate, we at least want to know how other people’s choices are shaping the world we live in.  Opinions such as “I was so gross when I weighed x pounds,” or “I can’t wait to get rid of these hideous scars” both reflect and influence the society comprising us all.  We love taking credit for our words when others agree or are inspired by them.  But if someone raises the possibility of our statements having a negative impact on others, the temptation to shirk all responsibility for others is strong.  But we can’t ever shirk it.  That’s cowardly.

This doesn’t mean we must accept others offhandedly judging our most complex decisions.  Unfortunately, no matter what we say or how carefully we try to shape the argument, there will always be those out there who judge before hearing the end of the sentence.  Putting more energy into brandishing our opinions than admitting what we don’t know is also cowardly. 

A friend I met in the hospital was ten years-old and in the midst of limb-lengthening when a woman with dwarfism approached him at a train station and told his mother, “You are RUINING your child’s life!  How could you do this to him?!” 

When the conversation was over, my friend’s mom asked him, “So what did you think of that?”

He replied, “I think you shouldn’t talk to strangers.” 

We are talking to strangers when we publicly discuss our personal decisions, and the Internet is blurring the lines between public and private discussions faster than ever.  As decision-makers, we cannot discuss our choices and our views free from any responsibility for the effect they will have on others.  As observers, we cannot accurately judge others’ decisions at face-value, free from the burdens of learning. 

During the seminars I taught about dwarfism and limb-lengthening to classes of middle school and high school students, I would write the following quotation on the chalkboard, paraphrased from a French magazine article in which I was featured as a child: 

Society does not physical accept differences easily.  Without a doubt, that is society’s fault.  But who should change?  Society or the dwarf?  For the dwarf to change, she must undergo years of painful surgeries and intensive physical therapy, risking many complications.  For society to change, it must alter its way of thinking.  Who suffers more in the change?  Which change is harder to achieve?

Every single one of the fifteen-odd classes I taught gave the same answer.  To the first question: The dwarf suffers more.  To the second question: Society is harder to change.

But my experiences with dwarfism and limb-lengthening have inspired me to try to change both.  As best as a bossy girl from Long Island can.

 

 

In Activism, The Medium Is The Message

6 Apr

 

An acquaintance recently referred to me in a discussion about limb-lengthening on a Tumblr page.  Having heard about my medical experiences from mutual friends, he insinuated that I may have been forced into it, reported the procedure is used to make people with dwarfism “look normal” and dismissed it as therefore morally wrong.

Around the same time that week, The New York Times featured a discussion regarding whether the Internet’s contributions to political discourse are always productive under the headline, “Fighting War Crimes, Without Leaving the Couch?”  The Internet itself is so multi-faceted it undoubtedly does as much good as harm.  Like all media, it has both cerebral and shallow corners.  And, as the Times piece reveals, there is a fine line between slacktivism and activism.  But the recent trend toward microblogging—Tweets, Facebook status updates, Tumblr—for political discussions is rife with problems.  For every productive comments thread I’ve read, there are conversations that never evolve beyond slogans, sneering, choir-preaching, or kneejerk reactions with most information based on hearsay.  Every single piece of information cited in the Tumblr discussion on limb-lengthening contained at least one factual error.  (More here on the fact that it was posted in the context of sick fascination rather than bio-ethics.)  That microblogging brings those who don’t have the time or energy to compose an entire blog post or article into the discussion is hardly a compelling argument, since it quickly extends to Those Who Don’t Have the Time to Research Or Think Much About the Issues. 

I’m quite used to having my story cited in debates because of the exposure I’ve allowed it.  I love debate like other people love video games and limb-lengthening is a contentious issue.  (Just ask my friend who witnessed a stranger with dwarfism approach his mother and demand, “How could you ruin your child’s life like this?!”)  When ignoring the broad-sweeping nature of his assertion, I consider this friend of a friend’s kneejerk opposition to cosmetic surgery preferable to, say, the handful of journalists who have interviewed me and chosen to portray limb-lengthening as a painless miracle cure for anyone unhappy with their size.  But reading his hasty dismissal of my seven-year-long experience based only on what our mutual friends had told him brought back memories of all the people I’ve observed summarizing deeply personal, overwhelmingly complicated decisions in 140 characters or less, both online and off:

“It’s been TWO months since she died.  He’s gotta move on.” 

“It was so selfish of her to get pregnant now with everything her husband’s going through.”   

“It’s absolutely horrible to abort a fetus that tests positive for a disability.  Who would do such a thing?!” 

“Only one girlfriend?  Well, then she’s not really gay.  She was just experimenting.” 

“It’s ultimately selfish to want a child with dwarfism.  You wouldn’t want to do that to a child.”

“No wonder she got mugged.  Any girl who goes hiking alone should know better.”

“It’s so stupid that women are supposed to be upset about not being able to have their own kids.  They could just adopt.” 

Assuming others’ motivations, knowing what’s best for everyone, passing on poorly researched information; too often gossip masquerades as political discourse, both in the media and at home.  We all feel compelled to have an opinion.  About everything.  The more noble root of this is the desire to actively take an interest in everything.  But that nobleness dies the moment we can’t be bothered to consider anything beyond our gut reaction before spouting off; the moment a desire to improve the world devolves into the simple urge to mark everything we see with our own personal “GOOD” or “BAD” stamp. 

Obviously, as a blogger I am constantly offering my opinions.  But I remain acutely conscious of my chosen medium, taking inspiration from Marshall McLuhan whose quote heads this post.  There is a difference between tabloids and broadsheets, between documentaries and reality TV, between a blog entry and a Tweet, and it’s not just big words: It’s the intellectual commitment required of the audience in order to consume.  True learning demands this commitment and risks upsetting our world view.  Voyeurism indulges our complacency and guarantees our prejudices will be cemented.     

Every blog post I put out is both a labor of love and a terrifying experience.  Every week I hear the imaginary voices of every individual who could in any way be implied in my arguments howling at me, “Who do you think you are?!”  The voices aren’t loud enough to scare me into silence.  But, combined with the inspiring examples set by my partner, my mom and dad, Ariel Meadow Stallings, Barack Obama and many others, they motivate my every edit of that girl in high school who was so well known for her righteous indignation that she was voted “Most Argumentative” in the yearbook.

That girl has made so many mistakes along the way.  I found out that posting your religious views online can earn you applause from strangers but cost you a friendship.  I’ve learned using the “I know someone who…” argument can offend or embarrass said person if you haven’t asked their permission, even when it’s intended as praise.  I’ve learned passion alone inspires your supporters but usually sounds like ranting to the unconvinced, especially on Facebook.  I’ve learned mass emails are not only passé outside the workplace but were never very popular to begin with.  (At least not among the recipients.)  I’ve learned to never read the comments section on YouTube unless I want to lose all my faith in humanity.

I intend to address all the reasons why I underwent limb-lengthening eventually, but at the moment I’m not sure yet if I can in anything less than the 13 pages I needed in Surgically Shaping Children.  I’m sorry to play Tantalus to those unable to shell out the cash for the book or find it at their library.  This undoubtedly limits the number of people I inform.  But, for now at least, I prefer to be held responsible for a few well-informed individuals rather than many misinformed ones.  And no matter how I end up condensing it, I know I won’t ever be able to fit seven years of limb-lengthening into one Tweet.