Don’t Push Me… – PowerchairDiaries

Talk About a Tragedy

By Mark E. Smith

Never cry over spilled milk – or when your dog goes astray at the National Dog Show. It’s not the end of the world forever.

Or, is it?

Like millions of Americans, I spent part of my Thanksgiving watching the National Dog Show. I don’t know why Thanksgiving and the National Dog Show have become a combined tradition – other than many of the dogs would love to tackle a turkey and turn it into a chew toy – but the two now go together annually.

What I’ve concluded is that it should really be called the National People Show because the show dogs could care less. My English bulldog has some sort of award-winning pedigree, a name on her AKC registration so long that I truly don’t recall what it is. We just call her, Rosie the English Bulldog, and even then she rarely listens. My pedigree pup wants nothing to do with a show ring; rather, she wants to eat, sleep on “her” couch and poop in our hallway when no one’s looking. Basically, a $3,000 show dog is an arrogant, slovenly alien that dwells in your house. At least mine is.

Yet, people are compelled to romp pampered pooches around a show ring on Thanksgiving Day – and we watch by the millions. However, this year was worth the spectral because as a miniature pinscher did what dogs do – playfully making a mad dash untethered across the ring – its frantic handler ran after it, swooping it up, all to the delight of viewers. It may not have been that big of deal, but the fact that the handler cried inconsolably while carrying the dog back and uttered, “My world is over forever,” made a lot of us wonder if she wasn’t the most vapid, self-absorbed individual in the world – forever! I mean, I know people take dog shows seriously, but what kind of person cries and declares that her world is over forever (which is redundant), because her happy dog went for a self-appointed stroll?

All of this made me want to talk to the handler, literally. I had to know why she would take such a mundane – if not cute moment – and process it as a human tragedy? In all seriousness, I deal with individuals and families everyday who face devastating life circumstances – permanent disabilities, terminal illnesses, and the worst-of-the-worst, parents losing their children. And, so, in my world where children pass away at age 9 due to muscular dystrophy and mothers are paralyzed in their 40s due to ALS, how can anyone be so seemingly shallow, to be so clueless toward true human tragedy that she would sob and declare the end of her world over a happy dog trotting around a show ring? Yes, she lost a dog show, but the dog was happy, there was no consequence on anyone’s life whatsoever and, no, despite her declaration, the world didn’t end.

Unfortunately, I wasn’t able to track her down. Nevertheless, there’re only two possible causes for the handler’s completely inappropriate reaction. The first is that there are other emotional and psychological factors in the handler’s life that came out upon the unrelated catalyst of the canine’s impromptu jaunt. Emotions have to come out eventually, and they can come out at unexpected, unrelated times. Maybe the handler has real issues in her life and they all manifested on the punch-drunk little pinscher. I can’t help but empathize for anyone in such a situation, where flood gates of emotion open at an unexpected time – it’s scary, isolating and, unfortunately, can feel mortifying.

On the other hand, some people do live remarkably privileged, narcissistic lives, where the slightest hiccup – a lost dog show! – is the seeming end of their worlds forever. Maybe the handler truly is as shallow as she’s appeared.

I have no idea where the handler’s life experience resides. However, given the two possibilities, I sincerely hope that her sobbing over a cantankerous canine was emblematic of a vapid narcissist because that’s a far better fate than those who’ve known true tragedies.

Dust and Sweat and Blood

By Mark E. Smith

Someone asked me what the hardest part of my career has been? I didn’t have to think twice: Learning to embrace criticism.

Whenever we put ourselves in the public eye, even on a small scale, criticism flies at us. I once read a scathing criticism about Mother Teresa. Why would anyone ever criticize Mother Teresa?

I would have never imagined 25 years ago when I published my first piece in Sports ‘N’ Spokes magazine about racing wheelchair technology that readers would send letters to the editor criticizing me. But, they did. I remember the next month’s issue where a Canadian racer lunched a personal attack on me in the Letters to the Editor section. It hurt and made me second guess myself, not as a writer, but as a person. Then I wrote a piece in New Mobility about the goal of equal rights for those with disabilities, and I again was shocked by the hate mail. By 1995, when my childhood autobiography was published – as wholesome as writing gets – I wasn’t surprised but disappointed at the strangers who didn’t attack the book, but me personally.

With my work becoming so visible online since the late 1990s, and my career and public persona growing exponentially ever since, public ridicule and criticism is something I’ve faced on a daily basis for two decades now. It’s weird turning on your computer each day, seeing complete strangers hating you. But, it goes with the territory of being in the public light.

What’s intriguing about criticism, however, is that it’s by no means limited to those of us in public roles. In fact, among the most painful forms of criticism can come from those closest to us, those who profess to care about us – spouses, parents, siblings. I know because I’ve been there, too.

I recently received an unsettling phone call from a 22-year-old college student with cerebral palsy. He’s striving to graduate college and build a life for himself, but his dad gives him no support, just criticism. I could relate on an eerie level because I was in almost his exact situation, where my estranged father went out of his way several times to lash out at me, mocking me for pursuing my education, criticizing me for “thinking I was better than everybody else because I was going to college.” Sure, it stung, but by that point I couldn’t put any credence in my father whose track record was a tenth-grade education, a walk-away father and an unemployed, life-long alcoholic.

And, that’s the pattern of critics: typically they’re the last people who should criticize anyone. From my public career to my personal life, I’ve never had anyone doing what I do criticize me. It’s always those not doing who criticize. Among the best quotes on this topic is President Theodore Roosevelt’s excerpt from a 1910 speech:

It is not the critic who counts; not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly; who errs, who comes short again and again, because there is no effort without error and shortcoming; but who does actually strive to do the deeds; who knows great enthusiasms, the great devotions; who spends himself in a worthy cause; who at the best knows in the end the triumph of high achievement, and who at the worst, if he fails, at least fails while daring greatly, so that his place shall never be with those cold and timid souls who neither know victory nor defeat.

Researcher and lecturer, Brene Brown, expands upon this, noting, “If you place yourself in the arena, you’re going to get your ass kicked. But, those not in the arena, who aren’t getting their asses kicked with us, have no right to judge. …Take your seats and be quiet.”

From Roosevelt to Brown, I wholeheartedly agree. We can’t put credence in armchair quarterbacks. If you’re on the field with me, taking blows, marred by dust and sweat and blood, I’ll give you due credibility. However, I can’t take beer-belly, armchair quarterbacks seriously – they invest nothing of themselves. If you criticize me, I will hear you out of decency, but I’ve learned that if I truly believe in what I’m doing – and I do – criticism may still feel lousy, but it doesn’t change my inspired path. Some are satisfied by watching and criticizing, but I’m busy doing.

Let us live boldly in the arena, and as the seated critics shout – too cowardly to be in the arena taking blows with us – use it as validation that we’re doing everything right and getting stronger all the time, thriving on being marred in dust and sweat and blood. It takes nothing to be a critic; it takes everything to strive to make a difference. See, the ultimate strength isn’t in ignoring your critics; rather, the ultimate strength is in having the courage to continue moving your life and career forward regardless of what they say.

The Real Story of David A. Fahrenthold

By Mark E. Smith

When David A. Fahrenthold, reporter for the Washington Post, asked me on July 21, 2014, “How do you explain the Russian mafia, then?” he finally had me stumped. Up until that point of the interview, I held my own when it came to explaining the challenges that many with disabilities face in obtaining life-sustaining power wheelchairs through Medicare. But, the Russian mafia? Well, he had me on that one.

“I don’t know anything about the Russian mafia,” I replied. “Again, David, those of us with cerebral palsy, muscular dystrophy, spinal cord injury or multiple sclerosis have to fight bureaucracy and cutbacks to such a degree that it takes some a year to get a vital power chair – and even then it’s often not funded to the fullest extent of technology needed. Medicare’s policies continue harming those most in need….”

See, all this started when Fahrenthold sought to interview me for a story he was striving to flesh out for the Washington Post. As he put it, “I’m looking to do a story on people with disabilities defrauding Medicare to get motorized wheelchairs.”

I took the absurdity of his premise seriously, seeing the interview as an opportunity to educate him. Of course those of us with disabilities aren’t looking to defraud anyone. We use our power chairs out of medical necessity, wishing to live socially-inclusive lives, where obtaining funding for a power chair is a lengthy, difficult process that, by its inequitable nature, harms many in need, depriving vital mobility. I explained that no one chooses disability or wishes to fight lengthy insurance battles to obtain the mobility needed to pursue education, family, career or community – it’s among the unjust challenges that often come with disability. I even explained the medical documentation trail, required supplier certifications and standards of practice, and why pending legislation to sustain access for complex rehab technology is vital to my peers.

“I’ve had cerebral palsy my entire life, and worked in the mobility industry for 17 years,” I told Fahrenthold. “Never have I met anyone using a power chair who hasn’t needed it out of medical necessity. It’s simply illogical to think that those of us with disabilities are defrauding anyone. To the contrary, we continue struggling to obtain the technology that allows full social inclusion.”

Fahrenthold became more insistent that those of us with disabilities had to be defrauding the government to get power chairs, and when I asked what incentive there was for me or my peers to perpetrate such a supposed crime, he had no answer.

“If I offered you a free power chair, would you take it?” I asked.

“No,” he replied.

“Why not?” I asked.

“I don’t need one,” he said.

“Exactly,” I replied.

He paused, then stated, “But, I’m not a crook.”

No, Fahrenthold wasn’t a crook, but he wasn’t being an ethical journalist, either. He continued pressing me to somehow say something that would substantiate that those of us with disabilities are defrauding the government to get power wheelchairs. It was at that point that he asked me to explain the Russian mafia.

Now, my back story is intriguing, but the whole story gets more disturbing for those of us with disabilities. On August 16, 2014, the Washington Post ran Fahrenthold’s story, the headline reading, “A medicare scam that just kept rolling: The government has paid billions to buy power wheelchairs. It has no idea how many of the claims are bogus.”

And, neither does Fahrenthold. He interviewed me and several other advocate-experts who told him the truth and reality of power chair funding, and he blatantly omitted us and the truth entirely. Fahrenthold got his story – but wrote it ignoring all facts.

So, what was in Fahrenthold’s story? Conjecture, the Russian mob and, indirectly, a sitcom as his source.

In his article, he pieces together a crazy cast of characters from the 1990s and early 2000s who round up immigrants, steal dead doctors’ identities, and then the Russian mob and others somehow convert it all into a scheme to prescribe those who are able-bodied wheelchairs, whom then use them to, in one case illustrated, hold giant, stuffed teddy bears. After interviewing me and other advocate-experts, this is the literal story Fahrenthold came up with.

Yet, Fahrenthold didn’t stop there. Because there’s no evidence of power chair fraud in the real world of present, he speculates on what criminals will target in the realm of Medicare fraud: “In Puerto Rico, the next big thing seems to be arms and legs.”

After going through this experience, and wondering why Fahrenthold would go through such lengths to try to create a public stigma that paints those of us with disabilities as crooks because we need wheelchairs, I did some research on him. On his professional Twitter page, in promoting his “story” on power wheelchair fraud, guess what he retweeted to support his case…. A YouTube clip of the Seinfeld character, George Costanza, using a mobility scooter. By his own tweeting admission, Fehrenthold’s inspiration and indirect source was a sitcom.

Yet, unlike David A. Fahrenthold’s farfetched account published in the Washington Post, life for those of us who rely on life-sustaining power wheelchairs isn’t “bogus” or a sitcom. It’s very real.

What Nancy Didn’t Know

By Mark E. Smith

My daughter, almost 17, ran into Nancy at the grocery store. Nancy is head of my daughter’s performing arts program each summer, a calm, cultured, collected woman in her 50s. However, as my daughter told me, Nancy was a bit odd that day at the grocery store, a bit disoriented, my daughter feeling as though Nancy didn’t recognize her, although they knew each other very well.

It was the day before Thanksgiving, so my daughter – although disconcerted by Nancy’s sudden distance – chalked it up as Nancy distracted by the holidays and outside of the usual setting where they knew each other, outside of auditions and auditoriums, the music of both their lives. And, I agreed.

Yet, Nancy knew something my daughter and I did not. Or, maybe, my daughter and I knew something Nancy did not. See, later that night, Nancy emailed my daughter, both apologizing and explaining. Nancy saw my daughter pushing a 5-year-old little girl who uses a wheelchair. She was singing and dangling a ribbon as my daughter pushed her down the aisles. But, in the email, Nancy went on, saying that she didn’t know my daughter’s connection to the little girl, but she knew what type of life the little girl must live in a wheelchair, and how difficult life will be when she grows up. Nancy had preconceived notions of what disability meant, ignorance and stereotypes locked into her mind somewhere astray from her wisdom and education, an out-of-place note in an otherwise harmonious symphonic composition.

However, my daughter and I knew something Nancy did not. What Nancy didn’t know was that there are no distinctions among children. Every child is perfect and beautiful and unique in his or her own way. As with no fall leaf being any less awe-inspiring than the next – regardless of its color, shape, or size – every child in a grocery store should bring a warm smile to your face as you pass by him or her in the aisle. Children are simply children, after all – perfect and beautiful and unique just like the leaves of fall.

Fake Empire

By Mark E. Smith

I don’t know, sometimes we must wonder. Were they words from the heart or just an amateur blunder?

See, he’s an occupational therapist by education, who now reps complex rehab power chairs in the Southwest of the nation. And, he was on YouTube talking about his clients, where he views his job as science. And, he was right on site, with the words he spoke, where all of us with severe disabilities have known the liberation of a wheelchair from when we awoke – from an accident or birth, ever since rolling the Earth.

But, then he said something about his clients that hit me at my core, where I immediately cringed, my jaw dropped to the floor: “…I’ve always wanted to fix people,” implying that those he serves are broken …Those were the words he’d spoken.

As ones with disabilities, are we broken? …To me, that wasn’t what he implied, but from his ignorance, it’s truly what he’d spoken.

Man, 2013, and without inhibition, there are still even those in the mobility industry who dismiss us based on condition. How is that acceptable by any standard? Just because we use wheelchairs, our societal value is still being slandered.

Now, I don’t wish to criticize another man or place blame because that’s not who I am. However, I wonder why one supposedly serving those with disabilities labels us with such shame? I mean, where’s he come off making us his professional token? Broken? It strikes my heart to hear such words spoken. Yes, we may have disabilities, but who is he – or anyone – to diminish our dignities? Broken? Token? Don’t use hurtful words to place me, we, us in the back of the bus. You, me, we, and us are perfect as we are, and no one has the right to judge us from the leather driver’s seat of a luxury car.

It’s a sad moment in time when one who professes to care actually hurts those one serves, where one doesn’t extend the respect that everyone deserves. Just because you can walk, that makes you a hero and martyr? How about coming off of your pedestal and see those of us with disabilities as real people – that’s a good starter.

And, could one convince my daughter that her father is broken due to disability? Nah, at 16, she’d see right through such bigoted hypocrisy. And, if a man and his company are bold enough to promote patronization, as one with a disability, I’m not going to tolerate their degradation. Maybe it’s easy for some to look past loaded words – hurtful – and just forget it. But, I can’t, and to him in his heart, soul, and mind, I hope someday he will get it.

But, for now, on the topic, I have just a few more words for those who made his video: learn to respect all of diversity, and most of all, please learn to edit. Learn not to record or broadcast a pitiful lack of simple human etiquette.

Dignity toward all is something we extend, not rob. And, if you’re not doing that toward those who you serve, my advice is to reassess what’s in your head and your heart – then find another job. Until you can respect those of us with disabilities and the equality we deserve and desire, you’re not a specialist of anything, but merely living half awake in a fake empire.

Sinking Ships Save Lives

By Mark E. Smith

I was at my boat dealership readying my boat for its summer launch, when I heard a commotion. It was a guy yelling about some issue with his $90,000 boat, dry-docked next to his Range Rover, with his blond, breast-implanted wife and couple of kids standing beside him. As I tuned in to his yelling, he was furious that the cabin on his boat hadn’t been vacuumed, part of the dealership’s summer launch package. And, as I waxed my boat, I thought, Oh joy – another A-hole who has no clue as to how blessed he is. I should go punch him in the face, and teach him a bit about appreciating life via a broken nose.

Now, there’s a good bet that a tool like him is in debt up to his ears. Still, life has to be a piece of cake when you have luxuries like a sport cruiser, high-end SUV, and breast implants. But, most importantly, everyone in his family seemed strikingly healthy – the biggest blessing of all. Yet, Mr. Tool seemed oblivious to all of it, where apparently his life is so easy – read that, so lacking of appreciation – that his only concern is screaming at a 19-year-old, who makes $8 an hour working his ass off – about his boat not being vacuumed. Again, I say that we tattoo A-hole on Mr. Tool’s forehead just to forewarn everyone he encounters.

Yet, Mr. Tool isn’t unique. We run into people everyday who have zero appreciation for all that’s in their lives. I was in line at Wal-Mart, and heard the clerk ask each person in front of me how he or she was? Each person had something negative to say, whining about this or that. I thought to myself, You’re healthy enough to to be shopping, with enough money to pay for groceries – life is great, so quit your complaining.

So, when I got to the check-out, I asked the clerk if anyone ever gave her an enthusiastic, positive response? Her answer, “Never – you’d be amazed at how miserable people are.”

No I wouldn’t. I know countless people with everything to be thankful for; yet, they make themselves miserable based on a looming lack of appreciation. People with committed marriages are miserable. People with great jobs are miserable. People with supportive families are miserable. People in great health are miserable. In plain terms, people who are blessed beyond belief will tell you how terrible their lives are – and I find it a repugnant mindset.

All of this led me to the question of, Why are people who are so fortunate so miserable and ungrateful?

It turns out that there’s a scientific basis for misery and a lack of appreciation by those who are truly blessed with love, success, and financial security. An article in the August 2010 issue of Psychological Science demonstrates that while the various forms of success in our lives can elevate us by class, status, and wealth, it simultaneously can impair our ability to enjoy or appreciate life, itself. It turns out that when we experience the success that life has to offer, it can numb us toward savoring the seemingly smaller – but ultimately important – parts of life, like being grateful for life, itself. As the study describes, it’s not unlike that “new car feeling,” where most appreciate a new car for a few weeks, but then lose gratitude toward it. Mr. Tool being pissed about his boat is merely emblematic that he’s lost the ability to realize how blessed he is in the most important ways, as with having a loving wife and two healthy kids. He’s allowed himself to lose humility and perspective by being blinded by good fortune.

The key, then, for all of us is to maintain a sense of perspective on our lives. Using myself as an example, I enjoy the material things I’ve earned – and feel blessed to have them, genuinely appreciating aspects like my career, house, boat, and van. However, truly, if I lost everything I have, I’d still be fulfilled as long as those close to me were healthy and happy, with my daughter being number one. You can fire me; burn down my house down; sink my boat; and, crash my van. Heck, give me a horrible disease in addition to my cerebral palsy. But, as long as my daughter is healthy and happy, I have no right to complain about anything, ever.

And, that’s what we all need to do at this moment: Remind ourselves of how blessed we are at the core levels of our lives, and approach the rest of life with a genuine sense of gratitude, right down to just being thrilled to be in line at Wal-Mart with a bunch of miserable people.

There’s No Problem

By Mark E. Smith

Authors of online “blogs” are always tracking the statistics of their readerships. And, here’s a statistic of my readership that horrifies me: 25% of you will die of a drug-related death. No, I’m not talking heroin or cocaine or any illicit drug. Rather, it’s the prescribed medications – the benzos, the oxys, the hydros – that, statistically 50% of you are addicted to, will kill half of you. It’s a catch phrase known as “accidental overdose,” or more discretely, such conditions known as “heart arrhythmia.”

See, according to government statistics, those with disabilities are four times as likely to be substance abusers than the general population, and 50% of those with spinal cord injuries, for example, are addicts. Think about that: If you go to a disability event, every other person who you meet is addicted to prescription drugs – and half of them will die from it. As a population, we’re not WheelchairJunkies; we are just junkies.

Interestingly, there’s a scientific basis why those of us with disabilities are so prone to addiction. Modern research into addiction causation shows a direct link to emotional trauma – where we abuse substances to both mask and maintain trauma. On the one hand, substance abuse can be an escape, but it often also ties in to a deep-level psychology where we’re the only creature known that actually strives to “re-inflict” trauma unto ourselves, “maintaining” it throughout our lives (a simple – but tragic – example is that 76% of women abused by a spouse were abused as children, unwittingly “maintaining” the trauma throughout their lives by being drawn toward unhealthy relationships). Disability often has any number of emotional impacts attached, resulting in trauma, so it’s the prevalence of trauma surrounding disability that dramatically escalates the risk of substance abuse.

And, make no mistake, our culture and the medical community supports the abuse of drugs to address disability. If a crack-head walks into a doctor’s office, they call the police. But, roll in to that same doctor’s office in a wheelchair, with a spinal cord injury, multiple sclerosis, or cerebral palsy, and the prescription pad comes out. What would you like? Klonopin, Baclofen, Oxycontin, Soma? No problem. What – you want to up your dosage? No problem. And, no one questions you – not the doctor, not the pharmacist, not your family. Why? Because no one wants to doubt your physical struggles, and everyone wants you pain-free. But, they don’t know that you’re blazed out of your mind, that the drugs have bonded with your dopamine and endorphin levels, where the prefrontal cortex of your brain just drives you toward more drugs, more drugs, more drugs – and you are metabolically a full-blown addict.

But, what’s even more awesome is that you don’t think you’re an addict. From rationalizing in your own mind that your disability necessitates medication, to the legitimization of it all from the medical community, you’re right on course – there’s no problem. What’s more, we know that addicts lose the capacity to truly know that they’re addicts – the drugs literally crank up the denial chemistry in the brain. At best, addicts can dish-out victim mentality, “I’m fucked up.” And, in ways, they’re right. For decades, we’ve heard that the first step to recovery is admitting that there’s a problem. However, we know now, through modern addiction studies, that while addicts may occasionally voice that they have a problem, that they’re fucked up, they truly don’t have the capacity to recognize that they have a literal disease that’s killing them (and, it is a disease in that it alters your biology beyond your control) – it’s usually only after intervention, detox, and months of focused recovery that one truly realizes one’s addiction. So often a lack of willpower is socially equated with addiction (and it can be argued still that a lack of handling stresses in life, along with a genetic predisposition toward addiction can begin the process, itself). However, recent studies show that once addicted, the most instinctive drives of the brain are effected, and conscious volitional control is lost – that’s a disease.

And, so if you’re reading this, taking prescribed pills right on schedule, with them in neat rows, lined up on the kitchen counter, don’t worry, you’re not an addict. There’s no problem. The drugs are there just to help you function normally, as directed.

And, if you’re the loved one of someone whose medication has him or her agitated, nodding off, eyes glazed over, don’t worry, he or she is totally fine – just keep telling yourself that, due to disability, he or she needs the prescribed medication. It’s OK – it’s all normal, there’s no problem.

Yet, there’s nothing normal about any of it, and it’s a life-threatening health issue that kills – and, to top it off, there’s virtually no treatment. Tragically, even if, as an addict, you expressed your problem to most addiction specialists (which you would never really do because, again, addicts lie to everyone, especially themselves), even the specialists wouldn’t believe you. You’re a person with a disability taking prescribed drugs – there’s no problem. So, even if you or your loved ones strive to get you help with addiction, the medical community isn’t trained to offer it to you as one with a disability. In fact, even the U.S. Department of Health and Human Services publicly states, “Substance abuse prevention, intervention and treatment services are not physically, attitudinally, cognitively, or financially accessible, to persons with disabilities for many reasons.”

And, so the question becomes, as those with disabilities, when we start off with a lack of accountability by turning to medication, then use the medical system to become drug addicts, and the medical community legitimizes it, with no ability to treat it once it becomes a disease, what happens? Well… we die.

However, there are a few ancillary solutions. Firstly, toward those with disabilities, as a community – and especially within the medical community – we must all be aware of this health crisis, where the acceptance of use and prescription process must be dramatically curbed. We have to acknowledge the problem and stop it before the pen hits the prescription pad.

Secondly, if you’re the loved one of an addict with a disability, and your loved one’s addiction has become your family’s problem – and it always does – get help for yourself and your family, where you’re not a codependent to the addict. Addicts have a clinical narcissism where they lose the capacity to care about anyone but themselves and their addiction, and they will gladly emotionally, mentally, and financially destroy their families without an inkling of conscience. Addicts slowly consume relationships, and you have to break-free of that cycle, no matter how much you love that person (or, more aptly, how much you loved that person before he or she became an addict, as again, the brain changes so much under addiction that the original person no longer exists).

Therefore, as individuals and a community, let us stop addiction before it starts. If we have a loved one who’s an addict, let us have the strength to prioritize ourselves and our families to distance ourselves from the addict. And, if you’re already an addict – which you’re truly incapable of knowing – there’s statistically no U-turn for you: You’re simply buying time among the living dead.

Words for Robert

By Mark E. Smith

Words.

People too often underestimate the power of words – the absurd, the reverbs. Words really can define the direction of one’s life, changing it from dark to light, from day to night, from blind to sight.

Words.

A few words can inspire, liberate, desire to be one’s best. However, to the contrary, words can also defeat, destroy, debilitate, make one’s life a mess. I mean, what we’re told by others, we often believe – heart on a sleeve – sometimes we’re left to flourish, sometimes we’re left to bleed. And, it’s for these reasons why we must choose every word carefully, deliberately, thoughtfully, where our words positively impact, not negatively detract.

Words.

I recently read a charitable letter – words striving for the better – about someone we’ll call “Robert,” and it sang a tune straight to the heart, that wasn’t an end, but a kick-start:

Though the doctors said there was little chance that he would walk again, our family refused to accept this devastating prognosis. We began doing research, determined to move Heaven and Earth to make Robert whole again.

Words.

In those two sentences are words that made me realize something that I’d never had the courage to admit to myself before: I’m not a whole person, just a partial equip. See, the fact that I’ve never walked makes me incomplete, a lesser person, someone not whole, my existence a burden. And, after fully realizing those few words in that eloquent, poignant charity letter, I understood how worthless I am, how meaningless of life I live – I am useless, a never-do-better. And, it’s devastating to my core, a struggle to live with myself like this – a fragment of a man, deserving dismiss. I mean, can you imagine the pain that my daughter has endured, being raised by me, an incomplete father, a lesser person, someone not whole, to be abhorred? How could I let my disability do this to her? And, how much suffering have I caused my family, friends, colleagues, and community? And, as for the women in my life who have come and gone, who can blame them – they deserve better than half of a man, me.

As one who cannot walk, who’s not whole – whose incompleteness has let everyone down – I have one thing to say from the depths of my heart, to write down: I am sorry for who I am, I regret who I am, and forgive me, Father, for what I’m not, not living to what life expects. Words can never express all of my regrets.

Words.

And, yet, those words, you see, aren’t me – I am whole, complete, and worthy, regardless of disability. However, here’s the question that truly terrifies me: If Robert is hearing such words from his family – Unless you walk, you’re not whole, you are not worthy – does he believe them?

No Farther Than Ourselves

By Mark E. Smith

There were many reasons why Kurt Cobain of the band, Nirvana, killed himself on April 5, 1994. Suicide, you see, is often a very complex process, rarely attributed to a sole cause, but most often a culmination of unbearable emotions. However, as fellow musician, Henry Rollins, put it, much of Cobain’s issues leading to his suicide could be traced to “the brutality of the public” – that is, the challenges of being in the public eye, where strangers can be astoundingly cruel, where Cobain, himself, discussed being too sensitive to endure criticism by the public, robbing him of his sense of identity.

When I started WheelchairJunkie.com 15 years ago, two aspects surprised me. Firstly, I was surprised by its success. After all, I created the site simply as a small place for my fellow wheelchair users and me to connect. However, its readership didn’t just grow rapidly in the beginning, but has continued growing ever since, where I’ve been forever amazed that such a personal project could reach so many – and I’ve been blessed that others have allowed me the privilege of being part of such a terrific community for much of my adult life.

Secondly, following the launch of the site, I was surprised by, as Rollins put it, “the brutality of the public,” which grew proportionately as the site’s popularity grew. I don’t recall exactly when my readership grew large enough to tip into the realm of my being somehow recognizable enough to become a target of “the brutality of the public,” but at some point relatively early on, a complete stranger emailed me in hatred of who he thought I was or represented. Now, in my 15th year of running the site, based on the vast readership, not a day passes where I don’t awake to an email or message board post where a total stranger – sometimes several – wants to argue with me, condemn me, or literally wish me dead.

However, rather than being distraught over strangers wishing me ill over my public persona – although my public persona isn’t a persona at all – I’ve been intrigued by the phenomenon as it’s occurred for well over a decade in my life. What’s intriguing is the question of why anyone in the public would hate me to the point of wishing my death, or at the very least stating, “I disagree with Mark on almost everything….” If we look objectively at my “public profile,” it’s about as mundane and noncontroversial as it gets. Read my weekly web and print articles and essays, read my message board posts, follow my Twitter and Facebook, and you’ll see that there’s no controversy (most of it is so feel-good or sincerely striving to be helpful that it borders on boring). Still, you’ll see comments directed at me that are antagonistic at best, shockingly graphic in wishing me dead at worst. But, why?

In a parallel, strangers hating me reminds me of what I know about Jennifer Aniston. Year after year, Jennifer Aniston receives among the most death threats of any celebrity. What has Jennifer Aniston ever publicly done that could possibly upset anyone? So, I suppose that if someone as noncontroversial as Jennifer Aniston is among the most hated celebrities, I, as a guy simply striving to help others in a similar situation to mine as one with a disability, shouldn’t be exempt from unexplainable hate from strangers, as well – after all, there’s no rationale to the brutality of the public, strangers merely inappropriately projecting their angst upon us. If you have a large enough audience, regardless of who you are or what you do, the brutality of the public emerges.

Nevertheless, when it comes to enduring the brutality of the public, I have a tool on my side – and you may, too – that most others in the public eye don’t have: Disability experience. See, if you’ve lived with disability for many years or a lifetime like I have, you likely know how brutal the public can be. From time to time, strangers will make assumptions about us based solely on our disabilities, projecting stereotypes and stigmas upon us that are completely irrational. It can be offensive and distressing. Yet, when it occurs, if we’re rational and self-accepting, we’re not offended by someone treating us arbitrarily different based on disability, but we instead recognize that a stranger’s ignorance toward disability is of no ultimate consequence as long as we know who we are. Therefore, there’s a fascinating overlap between disability experience and public experience, where void of rational explanation, strangers make completely inappropriate projections upon us – and it’s our job to not be offended by it, but to just recognize that it goes with the territory of public exposure.

Yet, there’s an even larger picture to all of this, life truths that apply to everyone. If we’re going to find ultimate fulfillment in life, we must be so resolute in our core values – in following our hearts of hearts, our passions of passions – that we’re simply not swayed by outside forces. Praise shouldn’t matter. Criticism shouldn’t matter. Peer acceptance, the support of our families, money, fame, a risk of failure – none of it should matter. If we are to be ourselves to the most true, sincere levels, we can’t be swayed by others – all we can be is who we are, where the brutality of the public is voided by our own unwavering integrity.

Unfortunately, as Kurt Cobain ultimately failed to realize, true singers sing solely for the sake of one’s own soul, not for the praise or criticism of an audience. For, when it comes to seeking acceptance, we should look no farther than ourselves.

Protesting Oneself

By Mark E. Smith

It’s intriguing – and bizarre – how some within the disability community are appalled by the concept of “disability awareness programs,” going as far as to belittle their peers with disabilities striving to raise the public’s understanding toward living with disability. There are even groups with disabilities who literally protest others with disabilities for engaging in disability awareness programs.

Now, you may be logically wondering why some with disabilities would criticize and protest others with disabilities for striving to raise awareness? After all, doesn’t disability awareness benefit everyone, including both those with and without disabilities?

Of course it does; but, let me explain the critics’ argument because their position has some merit – that is, until we analyze the entire picture.

I agree whole heartedly with the critics that I cannot teach anyone what it’s like to be me – that is, one with a severe disability. Through the various disability awareness programs that I’m involved in, I can express to non-disabled individuals a bit of what it’s like to have a severe disability, but they can’t possibly understand the true day-in, day-out physical, emotional, mental, and social impacts that living with a disability entails. And, this fact holds true for any of our understandings of other groups beyond which we belong. For example, I know of the struggles that many who are gay can face because I’ve been made aware of the issues through reading, hearing, and meeting those educating others and raising awareness on the topic. However, as a straight man, I truly have no idea what it’s like to be gay in America, as everyone has always supported the fact that I’m heterosexual – that is, I know of the struggles that one can face being gay, but I can never really know what it’s like to literally be gay since I’m straight, and my sexual preference has never been questioned or condemned by anyone.

It’s this issue – that we can’t literally teach others what it’s like to be us – that the critics argue makes disability awareness programs unsuccessful. However, the critics take it one notch further – they actually think that disability awareness programs diminish others’ views of living with disability, making our lives appear as frivolous. After all, they argue, if you place an able-bodied kid in a wheelchair, they turn it into fun – and there’s nothing fun about living with a disability. According to the critics, then, disability awareness programs are nothing more than a mockery of disability experience, a modern-day freak show for others’ entertainment.

However, where the critics wholly miss the target is that disability awareness programs aren’t about making strangers “disabled”; rather, disability awareness programs are simply about increasing awareness. The fact is, as disability educators, we can’t literally make able-bodied people disabled, and, therefore, of course they’ll never understand the whole experience. However, what we can do is raise their awareness of disability in general, in engaging ways, through exposure to those with disabilities – and that, in itself, is of vital importance. See, as humans, we fear the unknown, and when it comes to understanding others who are diverse from us, the unknown breeds apprehension, ignorance, and stereotyping – none of which we wish directed at those of us with disabilities. The only way to overcome this is through making others aware, even in the smallest of ways, that people with disabilities are simply people, too. And, it works, where an able-bodied person’s positive experience in learning about disability almost always remains with them as they go out into the world. Sure, having able-bodied kids play wheelchair basketball as a disability awareness lesson seems frivolous compared to our actually living with disability; however, the process allows the children to intrinsically build a better comfort level, seeing a wheelchair not as an unfamiliar, frightening device, but just as a wheelchair – and, as a result, they’re more likely to see people who use wheelchairs in a more accepting light. It’s just common sense: Awareness helps create understanding.

All of this brings us back to the original, logical question of, why would some with disabilities criticize others’ efforts to increase disability awareness, especially since it serves everyone in such positive ways?

Because, in many ways, such anti-awareness individuals misguide themselves toward self-defeating hypocricy. They claim to want social equality, but they refuse to interact in positive lights with others or make any effort to improve societal views for the better – instead, their irrational protesting of awareness programs makes them look as detached extremests, actually harming how others’ view of those with disabilities. And, we have to ask, what does such divisive behavior gain for any of us?

The answer is, nothing. In fact, it sets us back. If a city holds a disability awareness day, and individuals with disabilities protest it, the average person watching this play out on the evening news rightly asks, What the heck is wrong with these people – they’re protesting themselves? When you break down the subject of people with disabilities protesting disability awareness efforts at any level, it’s strikingly irrational – hypothetically like cancer survivors protesting cancer awareness efforts.

Of course, I realize that we can’t change the opinion of someone with a disability who’s extreme enough in his or her views that he or she criticizes or protests disability awareness. However, it is regretful that such individuals strive to defeat others’ good efforts, especially since we know that disability awareness programs work. In my own case, I’ve seen the positive effects first-hand that disability awareness programs bring in my working with thousands of Boy Scouts this past summer. Among the most touching results that I’ve witnessed is that I’m currently involved with several Eagle Scout candidates around the country who, based on going through the disability awareness program, switched their Eagle Scout projects toward efforts that serve the disability community – that’s a very real impact. Indeed, as I’ve witnessed time after time, it’s through disability awareness that individuals see less of a disability and more of a person in the end – and such powerful results should be fostered and pursued, not criticized and protested.

Come to think of it, maybe the critics with disabilities who don’t understand the importance of disability awareness programs need to attend a sort of disability awareness program of their own, where they learn that it’s not the wisest effort to protest oneself.