EDD ANONYMOUS

                As much as it pains me to admit this, a recent OPRAH.com article has shed some light on a problem I’ve dealt with for many a long year. The article, “Empathy Deficit Disorder; Do you suffer from it?” discusses how an increasing number of Americans fail miserably at empathizing with peers. Psychologist Douglas LaBier, Ph.D., is responsible for carving out this latest notch in America’s bedpost of psychological shortcomings, and explains that we learn such crucial human-relation skills as empathy as children. And following in the footsteps of all great Western thinkers, LaBier attributes Americans’ withering capacity to empathize to our impressive divorce rate and war-mongering tendencies.
                My first reaction to the unveiling of EDD was to be thrilled to have another disorder to add to my own list of childhood traumas no doubt induced by my parents’ divorce – I love, love, love playing the “product of divorce” card. It’s almost better than the cripple card. Oh, my parents will be so proud to know they’ve lived up to all of Freud’s expectations. In fact, if LaBier is correct in assuming we’ve somehow unlearned how to walk a mile in our comrades’ shoes, I’m completely off the hook for being an insensitive prick. After all, I’ve never walked in my own shoes. (I apologize, that was much funnier in my head… Where it should have stayed, I know.) But something about the whole “empathy deficit” part didn’t sit right with me. What does it mean to be empathetic? I always equated empathy with pity – something that I learned long ago has a way of manifesting in unflattering ways.

Merriam Webster’s online dictionary defines empathy as:

1: the imaginative projection of a subjective state into an object so that the object appears to be infused with it2: the action of understanding, being aware of, being sensitive to, and vicariously experiencing the feelings, thoughts, and experience of another of either the past or present without having the feelings, thoughts, and experience fully communicated in an objectively explicit manner;

Pity is:

1 a: sympathetic sorrow for one suffering, distressed, or unhappy b: capacity to feel pity2: something to be regretted <it’s a pity you can’t go>
synonyms PITY, COMPASSION, COMMISERATION, CONDOLENCE, SYMPATHY mean the act or capacity for sharing the painful feelings of another. PITY implies tender or sometimes slightly contemptuous sorrow for one in misery or distress <felt pity for the captives>. COMPASSION implies pity coupled with an urgent desire to aid or to spare <treats the homeless with great compassion>. SYMPATHY often suggests a tender concern but can also imply a power to enter into another’s emotional experience of any sort <went to my best friend for sympathy> <in sympathy with her desire to locate her natural parents>.

                Confused yet? Me too. It sounds as though empathy is similar to pity, but lacks that unmistakable tsk-tsk sound that always implies a sense of culpability for the victim. Anyone who has ever occupied a position of vulnerability is well-acquainted with the tsk-tsk. It becomes a mantra of nameless guilt that settles on the air around the pitied party, and pollutes even the best intentions. Pity is when you see a severely disabled child smile, and as you smile back contagiously you secretly pray your children are born healthy. Pity is when you snatch a food tray from the hands of a man with poor balance and deliver it safely to his table, but not before unknowingly passing him the same look your mother gave you when you wet the bed at the age of eight. Tsk-tsk, indeed.
                LaBier may be on to something here, folks. In fact, when the tsk-tsk isn’t leaving my white blouses dingy, I’m afraid I may be polluting someone else’s perfectly good aura. But what can I do to stop this ugly cycle? What can any of us do? Luckily, dear ol’ Mr. LaBier has the answer: lie.
                Yes, my friends, our disorder-diagnosing psychologist is writing the American public a prescription to fib our way through the rough patches until we find our empathetic footing again. LaBier suggests that while it may take time for us to reacquaint ourselves with sincerely acting empathetic toward others, we can begin by reciting lines set aside for shrinks and bartenders. “How does that make you feel?” might make you gag as the words leave your mouth, so something like: “Wow, ma’an, that’s tough.” Might be the better first baby step. If you’re feeling exceptionally adventurous, try “Do you want to talk about it?” on for size.
                Empathy Deficit Disorder (EDD) can affect anyone – you probably already know someone who has been infected, or who is at risk of becoming infected. But luckily, there is hope. That’s right, a cure is at hand. One little lie a day can help you and your loved ones on the road to a full recovery. And the best part is, the healing process begins immediately. Millions have already lied their way to empathetic empowerment, and millions more are vowing to live the lie every single day. Help us beat EDD and lie our way to freedom!  

Complete EDD article: http://www.cnn.com/2008/LIVING/personal/06/18/o.empathy/index.html

Merriam-Webster online dictionary: http://www.merriam-webster.com/

 

Yes You Can! Si’ Se Puede!… Or not. Whatever.

                If we may find one universal truth that binds us, it is this question: Are we capable of change? Do human beings really possess the power to alter mind, body and soul if suitably inspired? I’ve heard individuals ask this of their lovers, parents and friends. We’ve asked this of ourselves. And if we can shape our realities to suite our tastes; how? What does it take for our needs and wants to manifest into actions and results? I’ve heard great tales of people stepping outside of themselves to adopt a foreign land and life as their own. Stories have been passed down to me of a select few, living in squalor or under dangerous conditions, rising up to fight against the injustice they face.  But that’s just it, isn’t it. Transmitting accounts of life-altering feats is no more than spreading culturally uplifting pieces of urban legend – unanchored in time and space by hear-say and exaggeration. I need first-person proof to believe that a person can truly change. At the moment I have none.
                I’m tempted to compare our ability to change our lives to drug-addiction treatment. While I’m no expert on the subject of substance abuse, I’ve read many accounts of recovering addicts replacing their drug of choice with another habit to make the step-down process more manageable. The famed memoirist, Augusten Burroughs, details his alcohol addiction and road to recovery in Dry (2003). Burroughs describes how alcohol filled a void in his life from an unsatisfying career and personal life. Once he entered rehab, sex, cigarettes, and other drugs filled the void left by a lack of alcohol. Heroin was first prescribed in the nineteenth century as a treatment for morphine addiction – methadone is widely used today to treat detoxing heroin users. One drug replaces the undesired substance, while the original state of addiction continues to thrive.
                An old and recently reacquainted friend of mine has been struggling to come to terms with breaking up with a long-time boyfriend. And while the most casual split can leave a stinging sensation, this break up was epic. Multiple casualties are involved: a child by the convicted “Dickhead,” inlaws, outlaws, and innocent passer-bys. The rotting pile of associated bodies is topped with a gleaming restraining order that transmits SOS signals of impending doom straight up to the gods. Needless to say, my friend’s cup of bitterness runneth over (and rightly so).
                7 weeks later, and my friend’s inspiring sense of resoluteness is faltering. I doubt she knows it, though. It’s the little things she says, and the way she says them, that worries me. The other night she wrote me complaining that “Dickhead” hasn’t asked to see their daughter – that he is sure to use the excuse that the restraining order she slapped on him is keeping him from his paternal obligations. You think? Luckily I was successful in biting my tongue so not to point out the merits in his argument. The taste of blood was a worthy side affect. Besides, if he did visit, he’d only reaffirm the need for the restraining order in the first place. I fear that my friend is bound to undermine her commendable efforts to better her child’s and her life.
                When we proclaim with chins held high that: “This time will be different!” “I will stop doing A, B, and C, and start doing D!” are we simply falling into a grandiose New Year Resolution trap? Are we setting ourselves up for failure with unrealistic expectations? Or are we simply lying to ourselves because we know in our hearts our addiction will never die? I’d like to think that while our best laid plans are only those: plans; we are actually successfully living out changes all the time. My friend may be lying to herself out loud, but perhaps things are shifting just beneath the surface. She might not even be aware of the changes forming in her psyche. And that’s perfect because I’d like to think they’re aligning like chess pieces to checkmate his sorry ass… Just a little dream to help me sleep better at night.

 

Power Outages and Heaping Helpings of Humble Pie

A story in the news last week has left me slightly paranoid and marinating in self-disgust. I read that 61-year-old Dianne Odell from Memphis, Tennessee, died Wednesday as a result of a power outage that cut electricity to the iron lung she’d been confined to since she was 3-years-old. Before reading about Odell’s death on CNN.com, I assumed iron lungs went out of fashion some time during the 19^th Century. I had no idea that they were widely used during the polio epidemic of the 1940’s. It came as an even greater surprise to me that anyone in the world still uses them. I’m a descendant of Odell’s respiration-impaired generation – and like any child who is forced to endure the semi-intelligent stories of her elders, I took it for granted that I enjoy a level of breathing mobility denied to so many who came before me.

I’ll put off rationalizing my urge to flog myself into personal enlightenment by first explaining my burgeoning dread of impending doom. Ms. Odell and I share an intriguing side-effect of life: both our existences depend (or in Odell’s case, depended) on a reliable source of electricity. Going green is not exactly an option for our kind. Just as Odell’s iron lung ran on electricity, my ventilator runs on a rechargeable battery. The majority of the time I pay little attention to this not-so minor detail of my survival. After all, the battery is very reliable… and I have a back-up. Still, there have been incidences when my ventilator battery conked out in the most inconvenient of places, and left me to breathe solo. As lazy as I am, when push comes to shove I can grab the reins and breathe all on my lonesome; but I certainly wouldn’t put money down in favor of me out-ventilating anything with a lung capacity greater than a premature puppy or asthmatic gopher. So when I learned exactly how and why Odell died, it left me just a tad more than nervous. Our situations are too similar for me not to consider that if by some act of God, natural disaster, or moment of Homeland No-Security I could be left with no way to replenish my life-force. And while you are probably thinking, and rightly so, that these are the rantings of a delusional cripple; how do you think Superman felt knowing a ton of kryptonite might be waiting for him around every bend?

Now that I’ve shed some light on my latest technology-related paranoia, you’ll see where the self-loathing fits into this equation. My immediate reaction to Odell’s plight played into the very inhumane logic I have always tried to counter by upholding my own lifestyle. Bigotry is a master of disguise. It revels in putting on grand displays of brutality – distracting us with such offenses as the forced sterilization of disabled women (Ashley X), and restraining orders sought by priests against their Autistic parishioners (Adam Race) – so that we do not notice seemingly discreet, yet infinitely more harmful acts of discrimination. And while I’ve catalogued an impressive list of well-meaning transgressions against cripples of all castes and creeds, patronization ranks numero uno in my book. As lovely as it is to receive praises, I’d much rather have someone write me a blank check than fill me in on some vital piece of information like: “Oh, you are a true inspiration. I don’t know how you do it.” How I do it? Do what – live? One day while getting in my van, a chain smoking woman called out from inside her dingy pinto, “I just want you to know you made my day. I thought I had it bad until I saw you. Thanks, and God bless!” Ah, how I love to have strangers quantify my existence by how many cigarettes they go through in an hour. We cripples can sniff out even the best camouflaged stench of condescension in any rose-tinted conversation. The facts behind Odell’s life and death taught me, however, that I am not immune to practicing the same level of prejudice I’ve suffered from others.

The idea that Odell lived for 61 years in an iron lung, solely confined to one space and one position, was revolting to me. I wondered what quality of life she could have possibly had. For an instant I wrote her off as being selfish to rely so completely on her family for every need and want. Did she ever think of ending it all for the sake of her loved ones? Should it have occurred to her that perhaps the means did not justify the end in her case? I subscribed to the faulty logic of quantifying Odell’s worth by how she “contributed” to society.

(This is about the time the nausea kicks in, and I avoid mirrored objects in shame.)                

Just as the nicotine-preserved woman had absolutely no right to underestimate the quality of my life, how dare I cut Odell so short. I cannot imagine the difficulty and pain Odell surely endured throughout her life. Nor can I begin to fathom the magnitude of joy and love she experienced during her 61 years. We’ve all survived moments of profound loneliness while absorbed in a crowd; and I pray that each of us has known great comfort in solitude. Odell must have been familiar with both as well. I can’t pretend to understand her life on any deep level. In fact, I dare tread no farther on this dangerous road of speculation.  The only sound conclusion I can make is that Odell lived her life with grace. Yes, I’m sure she was a graceful woman.

                Odell’s thrust into celebritydom for her peculiar life and ironic death is inconsequential. It matters little that she lived largely isolated from the world: we all do. The particulars behind her demise hold even less bearing: consider how many self-conscious saps will keel over on the toilet. No, the only thing worth noting in regards to Odell’s life, and how she relates to any of us, is that if nothing else she makes a great mirror. I got a glimpse of her and found myself hideous. I only hope that one day my reflection resembles her grace.       

(For the complete article on Dianne Odell: 

http://www.cnn.com/2008/US/05/28/iron.lung.death.ap/index.html?iref=newssearch)

(For info about Ashley X:

http://www.ourfrida.org/take-action/ashley-x-and-the-american-medical-association/)

(For details about The Priest v. 13-year-old Adam Case:

http://abcnews.go.com/TheLaw/Story?id=4885322&page=1)  

 

As a great cripple once said, “Timmy!”

Crippled people are funny. Many of us look funny, sound funny, and are even lucky enough sometimes to intentionally induce laughing fits from our non-cripple comrades. For example, the adaptive piece (the Passy Muir Speaking Valve) I use in my ventilator tubing lets out a hideous duck-mating-call noise when it gets old. I remember that fateful day my junior year of college when all my dreams came true – the universe blessed me with ten glorious minutes of alone time with my Aztec warrior TA. I mastered my nerves like the stoic goddess I am, and initiated an intelligent conversation about Christian influences in Native American origin tales. It was brilliant, flawless. He was completely seduced by my cool demeanor; our auras began circling, sniffing the air for the delicious scent of hormone, when… QUA-ACK. Even the finest moments of seduction can be short-lived, I suppose. I’ve cackled for days just thinking about my older sister attempting to navigate the mean streets of San Diego in her electric wheelchair, drunk off her stationary ass. Once in high school, my friend with CP called her crush over, speaking to him in a hushed tone so he was forced to lean ever closer, and flung her spazzy arm up to grab his tush. Not to promote sexual harassment, but I will say that under the right circumstances it can be quite entertaining.

Genuine laughter is a tell-tale sign of recognition and respect. Now, I’m in no way implying that the asshole pointing and laughing at the old man who just tripped over his walker is illustrating a commendable amount of enlightenment toward the mobility-impaired. No friends, that man is simply an asshole. However, if that same old man was using his walker as a prop in his street rendition of “Step in Time” from Mary Poppins (1964), the asshole would be wrong not to laugh at the old geezer hopping around like Dick Van Dyke on laxatives. Context is everything. When we respond to a comic’s joke with laughter, we acknowledge his/her talent. Very often, we do not fully understand the intricacies of the punch line; we might even be teetering on the edge of being offended, but our respect for his perspective and wittiness keeps us captivated. Unfortunately though, there seems to be a double standard dictating who is allowed to be funny, and who is allowed to laugh. I’ve listened to fairly educated individuals condone the publicity of disabled comedians on Television and the Internet. They label the comedian’s audience as tasteless bigots who enjoy belittling “the less fortunate,” and in turn deny any sense of authority to the comic himself. As if he is a tool for the ill-intent of his spectators, instead of the instigator of joyful noise. Cripples enjoy making people laugh for the same reasons non-cripples do. We need to bring joy to others; we crave the head-rush that accompanies standing in the spotlight; and most importantly, we yearn to be listened to. We are all heard by our peers – most of the time the world crawls along wishing to press the mute button on life. But to be listened to, to have the people around you stop their lives for no other reason than to consume your ideas is a breathtaking feeling. Everyone deserves access to this high at least once in his life. And so I ask, wouldn’t our growth as an equal-opportunity society be illustrated best by our non-discriminatory laughter? 

I understand that it can be difficult to decipher the circumstances behind some situations though. In public it can be especially hard to know when strangers mean to be funny, and when we are simply misinterpreting the queues. As a result, many folks choose to error on the side of caution and swallow down their urge to hoot, rather than react inappropriately to someone’s instant of potential vulnerability. As a result, the good intentions of thousands are compromising our right, nay obligation to rupture in unflattering displays of hilarity.          

This is my round-about way of getting to my point that I recently came upon two very funny cripple-centric sites online. (I’m about to embark on a serious plugging-spree, so brace yourselves.) The first, www.howsyournews.com, is home to the ridiculously brilliant grassroots news program run and operated by mentally and physically disabled reporters. I learned of How’s Your News? (HYN) on Ouch! (http://www.bbc.co.uk/ouch/). Ouch! Is a BBC site that supplies an honest and refreshingly cheeky voice to all things impaired. Anyhow, HYN travels the Country searching for the next big story. They’ve interviewed hardened politicians at conventions, starry-eyed celebrities on the red carpet, and everyday folk on street corners. HYN has developed quite a cult following, and many of their finest moments may be found on YouTube.com. The cast of HYN all have varying degrees of learning difficulties. Their seemingly uncomplicated questions provoke interesting and usually hilarious answers from interview subjects. Case in point, when HYN reporter Sean Costello interviewed The Daily Show’s Rob Corddry, he unearthed the hidden truth behind Corddry’s media success. In response to Costello’s inquiry in to his profession, Corddry replied, “I’m a fake reporter.” I think Costello channeled America’s sentiments perfectly when he then incredulously asked, “You’re what?… Why?” And while I doubt HYN will compete with CNN and FOX NEWS to break sex scandals and confessions of drug addiction, with a reporter like Sean Costello on the front lines we’re sure to get the real story every time.

The other work of genius I discovered is the short film series, Retarded Policeman, on www.mediocrefilms.com. The Retarded Policeman sequence consists of eight short-shorts about a Down syndrome cop who pulls over random citizens for basically any reason he can think of. Josh Perry, the actor who plays our beloved crippled badge, toys with the viewer’s emotions and assumptions about how mentally disabled people interact with their peers. Greg Benson (the writer, director, and founder of Mediocre Films) juxtaposes moments that highlight Perry’s absolute naivety against side-splitting displays of male aggression and arousal. In episode 4, Perry pulls a speeding driver over, not for exceeding the legal driving limit, but for being Black. When the driver tries to convince Perry that he can’t simply pull people over and beat them with his nightstick, Perry rationally explains: “Well maybe you can’t, but I’m LAPD. I have a quota.” I’m not why this works, and is so funny. Perry boldly crosses the “Dead White Man Walking” line, and proves that sometimes it takes one of society’s others to point out the obvious in matters concerning social injustice.

And so I challenge you, my friends, to step up and demand equal-opportunity laughing privileges to and for all Americans. I hope I’ve initiated this 21^st Century civil rights movement by raising my voice for The Cause. I vow to risk injury of pulled muscles and cracked ribs as a result of untempered laughing fits just as long as people like the cast of How’s Your News and The Retarded Policeman crack the jokes. Now, join in on this cripple-lovin’-laugh-in, and spread the joyful noise!   

 

In Loving Memory of Me

Sufjan Stevens says it best: “All things go, all things go.” He sings of selling his clothes to the state, of loving in the name of living, and I listen. Two UCSD mugs sit in my kitchen cabinet, and four UCSD sweatshirts hang in my closet. They remind me of the countless sleepless hours spent during my past life as an undergrad literature major student; they haunt my mourning days of late. A part of me died on June 16^th, 2007. My identity was laid to rest with a weary sigh of relief, a couple drinks, and an enthusiastic round of applause by people too old to remember the vertigo of surviving your self. It all happened so fast; I was by my side as I submitted my last final exam, and I can remember lying with me as I took my first breathe of post-graduation freedom. But then, just as soon as I blinked tears of joy from my eyes, I was gone.

I have mourned in secret for close to a year now. And it has taken me these long eleven months to realize that mourning is exactly what I have been doing. No one could have convinced me back then that I would miss the all-nighters studying, or the hectic schedule of bustling from class to class. If you had asked me last May what I wished for most in life, my answer would most likely be, “To sleep for two weeks straight, stay in my pajamas for another five days, and only leave my apartment by sheer bribery of Starbucks and chocolate.” Hindsight has since taught me that a good night’s rest only takes us so far in our day.  And even though I was never lucky enough to be bribed with caffeine or sweets, I assure you that wallowing in one’s sleepwear grows old very quickly.

I understand now that my identity as a university student was the only thing in my life I felt I alone owned.  Congenital Muscular Dystrophy humbled me at a very young age into understanding that there is only so much in this world we have control over. The care of my body falls largely in the hands of others. And while it is clear that I am ultimately responsible for my physical health, I cannot take full credit for it. I came to terms with losing function of different muscles at various stages in my life. The process of growing up was directly linked to my acceptance of how my image has changed in photographs over the years. Now twenty-four-years-old, Having a trach and ventilator feels completely natural; whereas at the age of ten, it seemed as though machines were replacing me piece by piece. Growing up with MD also encouraged me to relate to activities I would never encounter first-hand by appreciating experiences unique to me. Scraping my knees on asphalt during an intense game of tetherball would never be an issue from the comfort of my electric wheelchair. Having the sense knocked out of me by every stray ball on the playground, on the other hand, proved to be just as likely, and infinitely more comical- especially once all moving spheres grew to resemble grenades missing their pins. In this way, life differences became caves to explore with my imagination. Fictional stories of others’ lives and adventures picked up the slack for my body, and persuaded me to rely on my mind to get me where I wanted to go. By exercising my imagination and will to learn, I found it possible to live beyond any physical confines that lay before me.      

Once I was accepted into UCSD, I recognized my mind as my sure ticket into equality. Lying one of sixty term papers in a messy pile, the name on my paper did not aim a spotlight at my wheelchair, only at my ideas. For the first time in my life I was judged for the strength of my views before my appearance. After overcoming the usual freshman jitters, and confronting my shyness, I realized just how liberating it is to truly have a voice. Professors encouraged me to discover my own worldview through the arts, and literature immediately embraced me like an old friend. Writers like Langston Hughes and Jack Kerouac taught me that the foreign, even unpopular voice sounds out most sincerely. So, I began to sound out too. It was thrilling to once again explore all the ways I was connected to others. It didn’t matter if I agreed with any given writer’s point of view, as long as it could help me shape my own.  My work often wavered between proclaiming a strong identity, and hiding behind others’ in doubt.  In this way, the faceless voice of my work took up my cause and became my champion, my crutch.  

On June 16^th, 2007, my beloved crutch was knocked out from under me. I understand that now. I also understand that the notion of equality I worked so hard to achieve is a polluted one. Equality is not marked by one’s right to highlight his/her best qualities, but by one’s obligation to expose his entire being for all to see and cherish. The urge to censor the image I projected kept me from being completely honest with both those I wished to touch, and myself. The pride of excelling in school came at the price of hiding a side of me I feared compromised my chance of being viewed as equal. Any expression of vulnerability or insecurity meant certain death. The day after graduation changed all that, though. It stripped me of the thing I needed most: my ability to answer that age-old question, “Who am I?” “I’m an exhausted, overworked, poor college student” rolls off the tongue so much easier than, “I’m unemployed.” To this day I cannot define who I am without first defining who I am not. I am no longer a UCSD student, not even a miserable one. It is getting easier, however, to say that I am proud that my identity is largely defined by my disease. MD not only shapes the way I perceive myself from the inside out, but also how I relate to those around me. It has taught me to appreciate both the strengths and weaknesses in us all. Personality traits I once feared as liabilities are beginning to surface; all my doubts and quirks are becoming accustomed to what it feels like to live under my skin. And I, in turn, am learning how to incorporate these lost pieces of me into the person I now want to be. My ego goes through a continual state of detox, and I am discovering new addictions to get me through. Not feeling the need to rationalize my every move seems to work best at cutting the craving for the praise of others. The liberation I once felt from being in a crazed school environment is now achieved by realizing I am, more than ever, capable of sounding out. So, yes, I am surely mourning something I loved, but as Sufjan Stevens says, “All things go.”