David A. Fahrenthold

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.

By Mark E. Smith

You know Zach Anner – the man of all media. Well, whatever you do, don’t let him in your office….

choir

By Mark E. Smith

From the back of the concert hall, I see my daughter in the very front, standing on the choir risers. Even though the distance is far, we make eye contact and I smile big….

Often, it’s our obligation to make things right. If we don’t, then we, too, are perpetuating a wrong or injustice, further harming others. No, I don’t mean make things right because we’ve intentionally done wrong. Rather, I mean that if there’s a cycle of dysfunction, we must have the courage, wisdom, and tenacity to say, Enough! This destructive pattern not only stops with me, but actually changes with me. It’s a really powerful process where you, as a lone person, can change your life, your family tree, and the lives of many around you.

We unfortunately are cyclical creatures, following the pack. Although we have free will and astounding amounts of opportunity, we rarely use it. We know that our life paths are alarmingly dictated by those of most influence in our lives. The surest way to be a teen parent is if your parents were teen parents. The surest way to become an alcoholic is have parents who were alcoholics. And, the surest way to being a terrible boss is to be groomed by a terrible boss. These risk factors create systemic, generational wrongs – and they go on and on.

And, it’s up to us – and only us – to stop them. No rule book said that because my parents were uneducated, impoverished, alcoholic-addicts, I had to follow that path. Sure, statistics said I would. However, I’m not a statistic. I’m an individual. And, I’ve long known that I alone had the power to right the wrongs in my life – and I continue working at that every day. This is my life and no one dictates its potential but me.

Breaking the cycle isn’t easy. I’ve been there, and it’s a never-ending process. It’s a difficult journey because there’s no road map and usually no support. It’s like walking on ice for decades, where as long as you stay up, you’re fine, and the fear of losing footing keeps you laser focused on every move you make. Yet, the struggle is motivating, righting wrongs is empowering, and breaking cycles is liberating. You may have been born into it, but you can likewise grow out of it. Heritage, genetics, environment, upbringing – you can be more than all of it. Right the wrongs, break the cycles, and live to your potential.

…And, my daughter – born to me, where my examples of fatherhood were grim and bleak – smiles back as the choir begins to sing.

photo (24)

By Mark E. Smith

So, I’m laying stretched out on the surgical hospital bed in my neon-pink underwear and nothing else. And, I’m great with it. Muscular, with my trademark tattoo of the universal wheelchair symbol on my shoulder, I feel like a superhero. Cerebral Palsy Man here to save the day! But, the medical staff is here to save me – or at least figure out how to fix me up so they don’t have to literally save me. This is pre-surgery surgery, or as I like to call it, surgery.

My sister is with me because she’s had the worst luck of anyone I know – cancer, a critical automobile accident, over 20 surgeries. She knows the practice of medicine so well that I often have medical professionals ask if she’s one, herself. In this way, my sister is a double-edged sword: she’s great to have in the room as a medical advocate, but I don’t want her touching me out of fear her bad luck will rub off.

The nurse loves my pink undies, and I think she’s a bit charmed by my sense of humor around it all – my pink undies, flaunting my body regardless of disability, and my optimism toward the procedure itself.

Yet, I’m genuinely scared. I’m so scared that I’ve waited to do this far longer than I should have. It was my physician and friend who finally convinced me, knowing how potentially serious this could all be if I kept putting off surgery and treatment of anything else found in the process. Then once the specialists told me of the extreme risk my health was under, I knew I had to take responsibility, not just for myself, but for the sake of those who love me. And, I still have a lot of lovin’ to do.

The nurse asks me to put on the hospital gown, and I want to wear it as a cape. But, she insists I wear it the right way. My sister helps me put it on as I pout like her four-year-old. But, I want to wear it like a cape!

The anesthesiologist comes in and notes my “chronic” cerebral palsy. Is there non-chronic cerebral palsy, where you only have it on, say, Thursdays? She then stands at a computer and asks me questions from the screen, including, do I get short of breath walking up stairs?

My sister bursts out laughing and I point to my power chair parked against the wall, saying with absolute seriousness, “Only when I’m carrying that up stairs.”

Finally, the surgeon comes in to give me the rundown before we go into the O.R. He’s wearing the exact model watch I own and love, and for a moment I wonder if a man of such impeccable taste is wearing pink undies, too?

Now I’m getting even more scared, and the anesthesiologist isn’t helping. The initial shot that was supposed to put me in La-La Land still allows me to recite the first page of Chaucer’s Canterbury Tales – from the tenth grade. Still alert, I watch out of my peripheral vision as they roll me into the O.R. And, I see the size of the camera they’re going to slide down my esophagus and the table of tools they’ll ultimately use to take three biopsies. And, I watch as the anesthesiologist injects a new drug into my I.V.

Next thing I know, I awake. I think I’m still in the O.R., but as I open my eyes, a nurse tells me I’m in recovery. I’m still on my back, with the gown on, but I’m oddly now wearing pants, socks and shoes, with no recollection of the procedure or getting dressed.

“How are you feeling?” the nurse asks.

“…Like the morning after an awesome night in Vegas,” I reply. “How’d I end up here, and where’s my shirt?”

Holly & Mark / Gillian & Zach

Holly & Mark / Gillian & Zach

By Mark E. Smith

It’s official: Zach Anner and I – the two most eligible men with cerebral palsy in America – are in love.

Now, when I say that Zach and I have been the two most eligible men with cerebral palsy in America, what I really mean is, we couldn’t get dates if our lives depended on it. And, while we were tempted to date each other out of pure complacency, it turned out that waiting for the two most beautiful women in the world to sweep us off of our feet (which, let’s be honest, isn’t hard to do when we’re not on our feet to begin with), turned out to be a better idea. I should clarify that we weren’t both waiting for the two most beautiful women each, which would equal four women in total and would be really weird and a TLC reality show, but one amazing woman each. And, we scored!

In an uncanny twist, about 10 months ago, Zach and I started falling in love – with two separate women, not each other! – in Southern California. And, amazing women they were (they, of course, still are amazing, even more so, but I’m trying to keep my tense straight). Zach’s beloved Gillian is an internationally-known singer-song writer, and my beloved Holly is an artist. Both women are creative, witty, caring souls, who’s personalities truly radiate at a tangible level. Their depths of character range from funny to empathetic to being up for all that life has to offer. So, how did Zach and I ultimately get so blessed with such amazing women?

Cerebral Palsy. Fellas, trust me on this one. Forget the cheesy pick-up lines, fancy cars and medical degrees. All you need to attract a woman is cerebral palsy. Even if you don’t have cerebral palsy, say that you do. You can have a Ferrari and medical degree, but unless you tack cerebral palsy on the end, you don’t have a chance. Why? Because every woman knows cerebral palsy is where it’s at.

Of course, cerebral palsy has nothing to do with Zach and my finding love. The truth be told, we know the real secret to our finding the two most amazing women in the world: We’re just ourselves. What makes Zach and me who we are is just that – we’re happy as we are, cerebral palsy, poor posture, twisted senses of humor and all. And, with self-acceptance comes a confidence and comfort, where we have the ability to laugh and love and embrace life with an enthusiasm that’s contagious. We’re easy to love, but we equally love easily, where we know that vulnerability is a strength, empathy is a gift, and a true lover is also a best friend.

If you want to be loved for you… well… just be you.

Awesome socks don't hurt, either!

Awesome socks don’t hurt, either!

drunk

To John, February 5, 1951 – July 24, 2010

By Mark E. Smith

If you’ve read the research of recent years, then you probably already know about me: I’m an alcoholic.

Indeed, the medical establishment has concluded that alcoholism is hereditary – that is, if your family tree is lined with drunks, you’re a drunk, too. Or, you’re at tremendous risk of being a drunk. Walking past a bar or liquor store is like a metal shaving passing a magnet – it wants to suck you in!

For me, being an alcoholic is torturous because I think it’s the only thing I’ve failed at. I mean, I’m a bad alcoholic – really bad. My parents, grandparents, great grandparents and probably their parents were great at it. I mean, my mother and father had it down to a science – it’s not easy losing everything, including your life. But, me, I’m a terrible alcoholic. I’m so bad of a drinker that I haven’t drank today, nor did I drink yesterday or the day before or the day before or the day before or the day before….

But, my alcoholism even gets worse, pathetic, really. I’ve never hidden bottles, lost jobs, sobbed, Please take me back, ruined a wedding or child’s birthday party, bathed in cologne, slept on the front lawn in my clothes, wondered how my car keeps getting smashed up, vomited blood, feigned vertigo, passed out with a lit cigarette and burned my fingers, lied to everyone about everything, stole money from my child’s piggie bank, stood with belligerent narcissism before a judge, drank because of this or that, drank vodka from a water bottle at church, hugged a tree while the Earth spun at tremendous speed and I urinated on myself, or explained to a bank teller why my signature doesn’t match. Yes, I’m a terrible alcoholic.

However, here’s what I’m really good at: a little thing called personal accountability. Unlike the color of my hair, hereditary doesn’t dictate jack squat when it comes to my being an alcoholic or not. Life gives me free will to choose my path. And, while I understand the science, it’s 100 percent my choice to drink or not to drink. My mother did nine months in jail due to her third DUI, and upon being released, she stopped by a liquor store on the way home and downed a pint of vodka. Time and time again, I’ve watched people around me choose to re-elect life-destroying alcoholism, while others choose sobriety (and the science behind addiction recovery shows that the only time alcoholics maintain sobriety is when they literally choose to).

In this way, I’m among the worst alcoholics you’ll ever meet because I’ve turned my back on my own heredity.

watch

By Mark E. Smith

On Walnut Street in downtown Philadelphia – an upscale shopping district lined with cafes – I’m let into a watch store by a security guard. It’s not an ordinary watch store. In the display cases are literally millions of dollars in watches – Cartier, Breitling, Rolex. I stroll by them casually, with no interest to stop and gaze in the cases.

I have my own watch, which was a gift. I don’t get many gifts, so this watch is especially meaningful to me. No, it’s not a Cartier, Breitling or Rolex. But, then again, I can’t put a value on its sentimental value, so maybe it’s more valuable than any watch in the glass cases – at least to me.

I’m greeted by a woman, and I explain to her that I need my watch band fitted. She gets a gentleman from the back, and he’s glad to help. As he sits at a desk and removes links from my band, I know that his hands rarely touch such a watch as mine, nowhere near the cost of even the least expensive watch in his store.

“I really appreciate your adjusting my watch,” I say. “I realize that it’s nowhere near the level of watches that you sell.”

“Any watch that tells time is a great watch,” he replies with a sincere smile, handing me my watch to try on.

With my watch fit to my wrist, I head back out onto the bustling sidewalk of Walnut Street. It’s as diverse of crowd as you’ll find anywhere. And, I’m struck by the profound words spoken by the gentleman at the watch shop. He really wasn’t just talking about watches, but the people who wear them. Think about how, as a society, we label everyone like watches – labels that often dictate a person’s status – from the wealthy to the homeless, the African American to the Irishman, the gay to the straight, to me, one with cerebral palsy. Yet, we’re all just watches, aren’t we? And, as the gentleman at the watch shop summed up each of us with such humility, Any watch that tells time is a great watch.