What Makes You So Special?

13 Oct

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Like why someone would really need to cut in line.

 

 

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3 Responses to “What Makes You So Special?”

Trackbacks/Pingbacks

  1. Is Dwarfism A Disability? | Painting On Scars - October 27, 2013

    […] 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 […]

  2. How to Help Your Doctor Get the Job Done | Painting On Scars - March 23, 2014

    […] 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 […]

  3. What Makes A Story “Depressing”? | Painting On Scars - May 24, 2015

    […] at that hospital was far from easy. As I’ve written before, listening to others share their realities in group therapy was one of the most humbling […]

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