By Mark E. Smith
If you’re a regular reader of this “blog,” you know that my daughter and I have a remarkable life together, really just the two of us. And, it’s my privilege to share this amazing video with you, giving a candid, poignant glimpse into our life together….
Mark E. Smith
The prevalence of alcoholism and drug abuse of many great writers, both past and present, is unmistakable, as is their urge to travel, expatriation in some cases. From Hemingway to Boroughs to Bourdain, our best writers have all sought escape in their lives. Why is that?
As a writer, I can tell you that the answer is, fear – and escapism from it. Spaulding Gray’s monologue – turned into a 1992 film – Monster in a Box, chronicled his emotional struggles to finish his first novel. In fact, on March 7, 2004, Gray committed suicide, a bout of depression that those close to him say was triggered by his struggles in writing his latest book.
See, many don’t realize the fear that most true writers have toward writing. If you’ve been in a bad relationship, knowing that leaving would lead to success, but you couldn’t find the courage to do it, that’s what sitting down to write is like. If you’ve been dissatisfied with your job, knowing that you could do better elsewhere, but were scared to make that leap, that’s what sitting down to write is like. Or, if you’ve ever wanted to diet and exercise, but were intimidated to start because of the commitment required, that’s what sitting down to write is like. It’s simply the fear of failure that stops many in their tracks, causing them to seek diversions or escapes instead of assuming accountability and just accomplishing the task at hand.
But, not me. At the age of 23, I met with a book publisher, and he verbally tore my manuscript to shreds, calling it “amateurish,” and I thought, I’ve spent two years writing this with nothing more than a belief that I could do it, so call me what you will – but, in my mind, I’ve had the courage to do it, and that’s all the validation I need….
“But, there’s more to this story,” he continued. “You might just be among the most fearless writers I’ve ever met, so let’s see if you’ve got the balls to take this manuscript from good to great – and, if you do, I’ll publish it.”
From that day forward, fearless was my only way of writing. I may fail miserably in the attempt – and I have at times – but fear will never stop me ultimately succeeding.
And, so this past spring, when I embarked on my most ambitious book project to date, a part of me thought, How am I going to pull this off? Yet, a bigger part of me was like, Man, I’ve published over 1,000 formal pieces, with five books under my belt – I can do this….
The concept was to capture the birth, evolution, current state, and future of complex rehab – and, most importantly, tell the stories behind the story in an astoundingly compelling way. In my mind, it was like setting out writing The Social Network (the story behind Facebook) – that is, could I make what would seem a pretty mundane subject, and find the extraordinary in it? I remember one of my colleagues saying, “You’re the only one who can take this subject and make it fascinating.” Easier said than done, I thought. But, I was up to it.
With a dose of fearlessness, I went to work, tracing the roots, interviewing the individuals, and capturing the iconic moment of complex rehab, and it’s taken me on both an extraordinary professional and personal journey. At first it was intimidating and laborious, just a push to get through the first chapter. I remember saying to the woman working as my editor, I’m nine pages into this, and it isn’t getting easier. However, then I remembered that the best writing comes from fearlessness, and so I did what many in the complex rehab industry would view as a pretty bold move: I went to Ohio, rolled through the doors of Invacare, and sat one-on-one with Mal Mixon, in his office, for three hours, interviewing him about the evolution of complex rehab technology, Invacare having innovated several key technologies in the early 1980s. And, from there (with his sharing some pretty astounding never-told-before stories), I was like, Wow, these are the types of awe-inspiring first-person stories I need to write the book that I know that I can write – and, more importantly, the type of book that people won’t be able to stop reading.
From there, the writing and interviews snowballed, where I wasn’t writing from fear or pressure, but inspiration and passion. In no time this past spring, I had a book coming together that captivated me – one heck of a story unfolding. No, the manuscript won’t be done for about six more weeks at this writing, but I wake up seven days per week itching to squeeze in that day’s writing where I can.
In so many areas of life, fear dictates what we accomplish – or, don’t accomplish, as it is. However, when we put fear aside, and say, Yeah, I can do this regardless of the challenge, we will ultimately accomplish it. Replace fear and escapism with inspiration and passion, and you’ll be amazed where your goals will lead.
By Mark E. Smith
Anyone who tells you that “all men are created equal” is simply stating rhetorical idealism. The fact is, we know we’re not all born equal – some are born into lives of privilege, while others are born into far more grave circumstances.
If you weren’t born into a life of privilege – albeit, wealth, a stable home, good health, and so on – you’ve probably seen your hopes and dreams thwarted at some point. When an upper-class kid, with good-looks, athleticism, and not a stress in the world goes to college on his or parent’s dime, a lot is a given, success is almost a birth right. However, if you’re like some of us who weren’t so fortunate, you don’t stare at silver platters, but you encounter a lot of roadblocks and mountains to climb. And, that’s OK – be happy for the privileged ones, but also see the extraordinary potential in yourself and others like you, those who have to work harder, those who face greater adversity, those for whom it takes more time, but get there, no less.
See, you can’t worry about what those of privilege have, or that you got the proverbial short end of the straw. So what if she has Daddy’s money, or he got a promotion by being at the right place at the right time. Life isn’t just about luck of the draw; it’s a marathon about tenacity. You have what you have, no matter how little, and it’s your job to make the most of it, building upon it over the long term – with laser-like focus, unwavering drive, and, yes, do-or-die tenacity. You have no safety net, and that in itself will make you a better tight rope walker in the end – you won’t fall because you can’t risk falling.
And, none of it is easy – climbing mountains never is. But, it’s totally possible. At times, you may have to make extreme sacrifices – maybe you live in a hole-in-the-wall place, with no television, subsisting on Top Ramen because the little money you have covers the books for your community college courses. Or, maybe you go to work despite health issues because you wish to excel in your career regardless of any adversities. The fact is, as long as you have unyielding tenacity and focus – where you have the guts to make sacrifices that others run from – you will succeed, period. Life isn’t for the privileged; life is for the strong.
Interestingly, political beliefs aside, our most recent three presidents are a great study in privilege versus tenacity – and where the playing field is leveled. President George W. Bush certainly worked hard in his life, but was born into privilege and a family legacy that led him to President, his grandfather a U.S. Senator, and his father, of course, a President. By contrast, President Clinton’s father died three months before his birth, and his later stepfather was a gambler and alcoholic who abused his mother, with President Clinton earning his way through college on scholarships. Similarly, President Obama came from a broken home, mostly raised by his grandparents, putting himself through school. So, we have three presidents of practically speaking the same era, and one was born into privilege, while two came from very humble beginnings. The point is, tenacity can catch up with privilege in the end – but it takes work and vision and guts.
If we truly look at the backgrounds of our 42nd and 44th presidents, there’s tremendous inspiration in that. You don’t need to be of the birth right of the 43rd president – lineage of privilege and power – to be among the most successful people on Earth. Rather, you can come from the so-called bottom, never feel lower than anyone else, and chart a course of personal empowerment. No, you statistically won’t ever be the president, like Clinton or Obama, but think of what you can accomplish in the way of education, career, community, and family – there’s nothing holding you back.
And, you mustn’t let success stop with you. You must have a moral and ethical compass to help others. You don’t want to be smug and selfish, but kind and giving – a leader in action. You see ignorance on the Internet, in line at the grocery store, on cable news shows. You don’t want to be that guy. You want to have the backbone to lead others from despair, not create it. See, the ultimate form of success isn’t in just bettering your life, but bettering others, bettering the world around you as you rise.
Life is simple geography: regardless of where you start, you can go anywhere – just plot an extraordinary course and follow it unrelentingly.
In art and dream may you proceed with abandon. -Patti Smith
By Mark E. Smith
The only sport that my disability level ever truly allowed me to compete in was downhill sit-skiing in the 1980s, when the technology – a kayak-type device, steered with short poles and edges on the bottom – just matched my limited coordination well enough to allow me to snow ski. In fact, it taught me a lot about how having the courage to push our boundaries isn’t about risks, but rewards.
It was the 1988 Western Regionals for what then was called National Handicapped Sports and Recreation, the governing body of adaptive snow skiing. In order to qualify for Nationals, one had to time in at Regionals, and my region was especially competitive because it was home to world-class athletes like Marilyn Hamilton, Dave Kiley, and Peter Axelson. However, I was lucky in that adaptive ski technology was rapidly changing that year, and those three ultra-skiers were in a new class called “mono-skis,” a technology that my lack of balance wouldn’t allow. So, the sit-ski class that I raced in was much smaller that season; yet, ultimately no less competitive.
My foremost competition was Mike Moleski, a paraplegic who was almost twice my age and definitely twice my size. I was a skinny 17-year-old kid with cerebral palsy, and Mike was a 30-something jock with muscles galore. He was also a bit of a loose canon. He appeared every bit your stoned surfer dude, right down to bleach-blond hair, and he sit-skied like he was on fire. I don’t know why, but when everyone else moved to the newer technology mono-ski class, he stayed in the sit-ski class with me.
And, I had no hopes of beating Mike, no matter how well I skied. He was too big, too strong, too coordinated, and too daring for me to realistically compete against on the race course. And, my coach knew it. “You’ve got three possible outcomes here,” my coach told me. “You can ski your own race and finish the course, but likely not qualify for Nationals. You can ski with abandonment and risk blowing out of the course, getting disqualified. Or, you can ski with abandonment and at least have a shot at keeping up with Mike and qualifying for Nationals.”
Of the three choices, only the two made sense to me: Ski with abandonment. Taking the safe way would get me down the course, but likely not with the time that I needed, so why even race? However, while skiing with abandonment would risk a disqualification if I got out of control and missed a gate, blowing the course, I still had an equal chance of ranking a leading time if by some miracle I could pull it off. I figured out of the three choices, only skiing with abandonment – and pulling it off – gave me a shot at qualifying for nationals.
The mono-ski class raced first, and the course was so steep and fast that they decided to start us sit-skiers off lower on the course. Mono-skis are a seat frame mounted to a single ski, with exceptional turning and edge control, so they handle high speeds and steep terrain better. Sit-skis are more of a sled, so they drift and speed can quickly become difficult to control. So, when I saw the steepness and speed of the course – even at half way – I was scared. I was no longer worried about blowing out of the course, but actually getting hurt.
Mike went first, and I saw his ski drifting as he flew down the hard-packed course, barely making each gate. If he was having trouble holding turns at speed, I was really in trouble. But, he finished the course, with a time I knew I couldn’t match – unless I skied with abandonment.
As the buzzer went off, I thrust myself out of the starting gate, and was immediately accelerated by gravity. Mike was smart in that he tried to stay in the trough carved by earlier racers, using it like a bobsled shoot to help steer his course. But, it likewise seemed to slow him down, so just past the first gate, I jumped out of the trough and opted a straighter, faster, more dangerous line, struggling to stay center course, hitting speeds that made it seem like the gates were much closer than they were. But, I soon figured that I really needed no technique, just abandonment. I applied no speed control whatsoever, and just used all of my strength to center the sled on each gate. And, as I hit the finish line, I had no hopes of stopping but to throw the sit-ski on its side, skidding to a stop in front of the crowd. Everyone cheered, including Mike – my time within a second of his – with my coach picking me up, sit-ski and all.
Sometimes in life – no matter sports, love, career, or disability, to name a few – the safest way isn’t always the surest or most rewarding way to accomplish what you wish. Sometimes you have to take calculated risks, and say, I don’t know how this is going to turn out. But, I’m going to put it all in my own hands, and give it a shot….
A friend is someone who gives you total freedom to be yourself. -Jim Morrison
By Mark E. Smith
“Bionic Brogan” is what one of many headlines called him. But we just call him Mitch. He’s one of only a handful of people in the world to own an exoskeleton, a $110,000 bionic “suit” that allows him, as a quadriplegic, to walk. Yet, beyond his owning the coolest gadgets among our group, we just like Mitch as Mitch, a hipster Canadian with a great laugh and a completely silly sense of humor – a class clown at heart. He wears his trade show credentials on an elastic neck lanyard, and stretches it like a rubber band, so that it retracts and hits him in the face. And, I find it more hilarious every time he does it.
Voitek!
With Mitch is his buddy and bionics colleague, “Voitek.” Voitek is a literal rock star – minus any musical talent or an actual career. He’s a cross between Justin Timberlake and Johnny Depp, with the swagger and charisma we could all only wish for. And he dresses the part, pulling off the retro, bad-boy look in blazers and hats like he just walked out of a black-and-white Dolce & Gabbana ad. And, he’s always got some mystery to him, once showing up with a black eye, where he even pulled that off as cool. And, I constantly shout his name no matter where we are, just because I like the sound.
Voitek!
Rene sits next to me, and I first met him when I was 18. And, he’s the “orange man.” In an inexplicable way, everything he owns is orange – not just orange, but the exact same color orange, defying the difficulty of matching an exact color shade. From his wheelchair to his watch, to his phone to his clothes, it’s all the same, exact color orange. He told me it’s an attention-getter as a salesman – and it is. But, I remain boggled by his ability to get so many items in an exact shade of orange. I think he owns a Willy Wonka-type machine that creates orange things. Rene and I are affectionate toward each other, as is the whole group, where hugs and, “Love ya, Man,” trumps handshakes or Neanderthal bravado.
Voitek!
Across the table from me is Ryan, the “wheel guy.” Virtually every ultralight wheelchair in the country has his wheels on it. Ryan has boyish good-looks, and just smiles, seemingly glad to be anywhere. He’s the all-American guy, whom I could see teen girls getting a crush on because he comes across with a charming ease and innocence. He’s just a genuinely great person, and puts everyone at ease. And, he always ends up the designated driver, namely because he’s arguably the most responsible among us. You wouldn’t look at the rest of us and think that adding a motor vehicle to the mix would be wise. But, Ryan legitimizes everything – he’s the front man to our motley crew.
Voitek!
As for me, I’m always in a tie – the “tie guy” – completely overdressed for virtually every occasion, including dinner with the guys. And, I always have a ridiculous but true story to share – and sometimes create in the moment based on my pure stupidity. It usually begins with, “So, you won’t believe what happened to me last week…,” and ends somewhere hilariously bad. Or, it begins with, “Watch this…,” and ends somewhere hilariously bad. In whole, it usually ends up with my life being hilariously bad, which all of the guys appreciate and admire. Getting my power wheelchair stuck in a revolving door because I bet one of the other guys $100 that I could make it through is the story of my life.
Voitek!
Rene knows the owner of the high-end restaurant we’re at – and the owner and staff are as amusingly ridiculous as we are, right down to the model-ish blond hostess who tells me she’s from the Ukrane, but seems to ignore all customers, chatting us up. We’ve forgone menus, and the staff just brings us dishes of food – and we’re not totally sure what most of it is, but we just eat it, trustingly. The talk, besides trying to figure out what we’re eating, revolves around the nonsensical – no room for business when there are so many stories to swap. Women usual come up – no, not literally, as we’re too ruckus for that – but in our conversations. Married, divorced, dating, dumped, we all struggle. Except for Rene, who’s just glad that his wife has tolerated him all of these years. I’m sure it must be true love for Rene and his wife, but a few of us would gladly settle for tolerated by a woman at this point. And, tolerated is good because we can behave like the well-meaning but wacked-out bunch we are, and not get yelled at by our significant others. Mitch is a clown, Voitek ends up with black eyes, Rene dips himself in orange, Ryan just smiles, and I get stuck in revolving doors. That’s well-behaved and tolerable in my book. What woman wouldn’t want guys like us?
Voitek!
And, then a bottle of Patron just shows up. I still don’t know what Patron is, other than hearing it used as a status symbol in rap music. And, we all do a shot, where to me it tastes like chocolate milk. The conversation soon shifts to a group Vegas trip – which is both the best and worst idea ever. The five of us in a 550-square-foot condo, with unlimited access to …well …everything we shouldn’t be doing, is a disaster waiting to happen. I love Vegas, and if the plan went down, even with Ryan as the front man apologizing, I may never be allowed back again – that is, to the city. And, I’m not sharing a bed with Rene no matter how cuddly he is. I say, let’s just light ourselves on fire now, and save the airfare, condo cleaning fee, and various police citations.
Voitek!
Yet, the more that I think about it, the better the idea of Vegas with these charming sloths sounds. Maybe it’s because these are among the best friends a guy could ever have, and I’d never pass on a chance to hang out with them. Maybe because when I’m with these guys, all of our troubles are left behind, and we live in the moment, making up the rules as we go, where we just accept each other as-is. Or, maybe because I’d love a few more ridiculous stories shared, where Rene could bring up in another city, at another time, “Remember when we were in Vegas, and….”
Now I’m a grown man, with a child of my own, and I swear I’m not going to let her know all of the pain that I’ve known. -Art Alexakis
By Mark E. Smith
When I was 17, I spent a lot of that summer camping in Yosemite’s White Wolfe region. It was part independence building, part adventure, part escape. I attended forestry seminars that summer, and learned that wild fires can prove good for the environment. Dense forests fill up with debris, and stifle new growth; however, a wild fire clears out the old, and allows new plants and trees to grow. What initially seems like destruction, actually builds a new, stronger habitat.
At that time, I wasn’t in touch with my father. He’d walked out on my brother and me many years earlier. We were little, maybe five and six, or a bit older – it’s hard to date such things, probably because it’s too painful to remember exactly when your father left. But, I remember.
Regardless of dates or circumstances, when your father drives away for the last time, it creates a void in you that many say never goes away – it’s just a heavy sky that’s left over you. And, as the seasons pass, you learn that other people, who you love, leave and don’t come back, either. It’s emotional dominoes set into motion by the man who’s supposed to be a boy’s hero, and you learn to just fall with them, relationship after relationship, where the fear of abandonment becomes the security of being alone.
Yet, you grow strong in ways, where you never distrust because there’s always a chance that someone might stay. You’re forever a seven-year-old starring out of the living room window, with the possibility that Dad might pull up in his pick-up truck, boozed up but playful. And, so you learn to trust in a counter-intuitive way – it’s the dream that’s the only comfort to hold onto.
And, you likewise learn to never leave anyone because you don’t want her or him to know the pain that you’ve known. Yes, everyone’s going to promise to be by you till the end, but who dare live up to it? You will live up to it because you won’t be like him.
And, then there is her, your own child, and as a broken man, there’s something remarkably whole about you in that single role, where your pieces come back together, and you see everyone around you in the sunlight of spring. It’s inexplicable that where only destruction has been, beauty emerges – a single flower among ravaged woods. And, you realize that the injustice of not having a father is corrected by being a father – the better man, you are for it all.
Morgan Duffy & Crew, Stanford Class of 2013
By Mark E. Smith
Author’s Note: There’s a disturbing undercurrent that, in this modern day, some teens with physical disabilities still feel isolated, depressed, even suicidal. So, let us talk about being a teen with a disability, and how life gets better….
As a teenager struggling with having a disability, you need to know only one truth: Life gets better – remarkably better.
I remember being a teenager with cerebral palsy and, like you, I remember struggling with it all – feeling different, but wanting to fit in; being treated different, but wanting to fit in, or, at times, feeling completely “normal,” but not being accepted as such. No, high school for me wasn’t all terrible – there were some good friends and good times, as I hope there are for you. We should all see good where there’s good. But, it wasn’t easy for me being different. But, it did get better. And, I know it may not be easy for you right now, but it will get better – remarkably better.
See, high school is tough for everyone, typically a confusing time, and everyone just wants to fit in. I have a 16-year-old daughter who “fits the mold,” and it’s even tough for her and her friends at times. Like you and my daughter and her friends, I just wanted to fit in, too – to have the right friends, have the right persona, and get invited to the right parties. And, for me, maybe like you, sometimes it worked, and sometimes it didn’t. Well, a lot of times it didn’t work. And, when it didn’t work – the occasional bully calling me “retard,” or not getting invited to different events and such – it really, really hurt. At points, I, too, just wanted to give up and die. And, before it gets better, sometimes it gets worse.
I remember at among the lowest points in my teen years, I had a girlfriend who I thought truly accepted me, but when it came time to dance at the prom, she wouldn’t dance with me because I used a wheelchair. I remember thinking that my disability was the blame, that if I wasn’t plagued by cerebral palsy, I’d have all of the friends, girlfriends, and coolness in the world. However, I would never be accepted or successful because of my disability.
But, I was wrong. High school and my peers had no impact on my ultimately living a happy, successful life. The day that I graduated, virtually everything got better for me. I went from bullies calling me “retard,” to being a writer, speaker, and academic. I was soon invited to real parties, with amazing people, even getting to meet the President of the United States. And, while no relationship is perfect, I had my ultimate dances with amazing women since – loving, accepting, sincere. It all got better – remarkably better.
My daughter and I were planting Marigolds this spring in a flower bed in front of our home. It was a 70-degree sunny day, where our English bulldog lay on the ultra-green grass. And, although my life, again, isn’t perfect, I was reminded of all I’ve been blessed with – my daughter, a career that helps others, a nice home, the respect of those in my community – and I thought back to my days in high school, wondering where those who treated me poorly are today? Oddly, when I was on Capitol Hill recently, none were there. I don’t see any of them in magazines that I write for, or any with Internet followings. And, I have to wonder with a smile, is their grass as green as mine?
The fact is, while those who hurt you today in school may seem so powerful, they’ll soon enough get lost in the world. But, you. You were born into the extraordinary, with capacities toward life success that they’ll likely never realize. Let’s wish them well, but they don’t have what you have – that is, potential waiting to explode. And, it will, where your life is going to get better – remarkably better. You’re a survivor and a thriver, and that which seems to work against you now, will work for you soon. You’ve been given the gifts of tenacity, perseverance, and empathy – traits that are rocket fuel for life, just waiting to ignite your life in the most rewarding of ways.
My young friend, Morgan Duffy, graduates from Stanford University in a few weeks at this writing. She’s a Dalai Lama Fellow; she’s done an internship on Capitol Hill; and, she’s studied abroad. And, get this, she’s accepted a job with Genentech – without even applying (the recruiters found her based on her accomplishments). But, I’ll let Morgan’s own words explain the rest of her story:
So I’d like to tell you that I am your average 21 year old, living life and learning through mistakes and experiences. Most of my experiences, however, are less than average. Three years ago, I packed up my life and moved from the small city of Scranton, PA to begin my college education at Stanford University. I am a Cross Cultural Health and Intervention major with interests in disability, health policy, social justice, women’s health and choice. Like most, my interests are based in experience. I am a woman with a physical disability, who navigates the world in a wheelchair. And I like to feel the world beneath me in that way, taking each bump and knock consistently and steadily. My mother is a nurse, and through my years listening to her complain of the inefficiencies and inequities of modern US health, I have been motivated to learn how to change this. Social justice was the foundation of my high school career at Scranton Prep, and I have vowed to never forget.
Morgan isn’t an exception, she’s the rule – just as you are. You, too, will leave your town and “feel the world beneath you,” as Morgan puts it, going on to successes that won’t just change you, but will change the world.
It may all seem tough today, but the strength to hold on was born into you – there’s a purpose for who we each are, and yours is extraordinary. Tough out the tough times, as it all gets better, remarkably better. And, yes, the grass will be greener on the other side. I’ll see you there.
By Mark E. Smith
My mother raised me with her unique philosophy toward charitable giving. “Do right simply because it’s the right thing to do,” she used to say. “But, never forget that no good deed goes unpunished….”
She told me that saying hundreds of times, and I remember questioning her on it once, where she explained that we should all do good, but expect to ultimately be punished for it. Way to scare the heck out of a 7-year-old regarding charity, Mom!
Fast forward to the recent, where I was at a muscular dystrophy fund-raising ball, bidding on an item. See, the way it works is that companies donate items, you bid on them, and the money goes toward MDA summer camp. My mode is to sincerely maximize my bidding by not bidding on something that I want, but by bidding on something that might make a difference in someone’s life close to me. The money goes toward the MDA, someone close to me gets a meaningful gift, and everyone wins.
…Except for some little kid, whose summer I ruined in the process this time around. Sorry, Kid – sometimes doing right simply because it’s the right thing to do gets you punished.
This all started with the best of intentions, my date and I, in formal attire, browsing the auction items, mixing and mingling. There, we found a red-and-silver electric ATV, looking like the most fun ever for a kid. My date’s son has been doing great in school and at home, and we both thought he’d love it – so that’s what I decided to bid on. Again, my winning bid would support a child going to MDA summer camp, my date’s son would get a much-deserved surprise, and all would be great.
Now, the way bidding works is that they give you what looks like an iPhone, and you enter the item number, your bid amount, and then it tracks the bidding for you throughout the ball. A green check mark means you’re the high bidder, and a yellow exclamation mark means you’ve been outbid, but then you can increase your bid.
So, I bid on the ATV, and within minutes, I see a yellow exclamation mark, and raise my bid, likely over the MSRP of the ATV because I kind of know what those types of riding toys cost. And, then, I’m outbid immediately, so I bid again. And, then, I’m outbid again!
I then hypothosize that beyond the good intentions of the money going to charity, someone is running up the bid just to tick me off – even though the whole process is anonymous. In fact, I’m then convinced that the couple running up the bid thinks that they have more money than me – which I’m pretty sure that the busboy had more money than me at that gig, so point deserved – and then I’m really ticked off (again, even though no one knows who’s bidding on what, and we’re all eating dinner as if it’s a judgement-free zone). And, so I keep bidding and getting outbid – and keep getting more ticked off.
I don’t know about you, but if the rules don’t work in my favor, I just change the rules, a marvelous way to live. So, I decided that it was no longer about who had more money, but whose kid deserved the ATV more. And, I knew that my kid deserved it far more – even though he’s not my kid. In fact, their kid is undoubtedly a spoiled, whiny, miserable little brat, who doesn’t deserve an awesome little electric ATV. Seriously, you know how upset you’ve been when you’ve found your curbside garbage cans knocked over? Their kid did it, and he hit your car with a shopping cart on purpose, too, in the grocery store parking lot. The last thing that a rotten kid deserves is a red-and-silver ATV!
You’re probably thinking, Mark, is it truly fair of you to judge a child, let alone one who may not truly exist? Absolutely! This is the same kid who picks his nose, and wipes it on his little sister’s shirt. He’s rotten, I tell you!
So, I just kept bidding. It was admittedly no longer about the MDA in the moment, but that my kid was better than their kid (again, even though he’s not my kid). It became about principle to me. Money was no longer an object – their kid, based on his own poor behavior, wasn’t getting that ATV, period. If he was lucky, he’d do what we all did as kids during the summer, and be glad to ride a piece of plywood with roller-skate wheels bolted to it. If it took $1 million – which would never happen, but let’s say it could – I was going to spend whatever it took to prevent that kid (who, by the way, spits his chewing gum on the sidewalk!), from getting that ATV. If you want to be an ill-behaved child, fine. But, your parents aren’t buying you an ATV under my watch, Buster!
And, then, BAM!, bidding ended – and I won the ATV, for an illogical sum of money. But, let us not forget, it wasn’t about money, but principle, where a child with muscular dystrophy could go to camp, my date’s son got a much-deserved surprise, and a rotten little kid wouldn’t get rewarded for his terrible behavior. That’s a charitable trifecta in my book!
As the ATV was loaded into my van at the end of the night, I realized that my mom’s asinine philosophy toward charitable giving finally proved true. I did the right thing, and a little kid got punished for it. Karma hurts, Kid – suck it up, with no ATV for you!
By Mark E. Smith
In my recent HME News column, I talked about how, unlike in the classic 1975 School House Rock song, a bill isn’t just a bill, rather, it’s about people, not paper, where getting legislation passed is about Capitol Hill face time, convincing our elected officials and their staffs to sign-on and support disability-related legislation is vital.
Indeed, I was privileged again this spring to be on Capitol Hill – as an advocate, not just a bill – summoning support for H.R. 942, the 2013 version of the Ensuring Access to Quality Complex Rehabilitation Act. We’ve introduced similar versions for several years now (much like in School House Rock, bills low on the priority get stuck on the steps of Capitol Hill, and fall off of the calendar, needing reintroduction). However, this year’s version, we believe, has a real chance, as face time and the quality of the proposed bill seem to have converged, where our elected officials have off-the-record at least noted it as a no-brainer, namely because it serves those with severe disabilities so well. See, H.R. 942 doesn’t just help protect complex rehab technology funding, but it eliminates the “in-home-use-only” rule; it allows those in long-term care facilities to qualify for vital technology like power wheelchairs; it sets standards so that technology is only prescribed to those with appropriate conditions; and, it further elevates the education and licensing of providers. Therefore, H.R.942 isn’t just about protecting funding, but also it’s about safeguarding consumers. And, it’s a cost-saver. For example, Medicare currently spends $1.6 billion annually on pressure sore treatments. H.R. 942 ensures access to both the right seating and clinical services to help prevent pressure sores. In this one area alone, a staggering amount of long-term healthcare costs could be saved, arguably hundreds of millions of dollars in the least.
But, again, H.R. 942 isn’t about paper, it’s about people. And, on the Hill with me, lobbying, were among the most amazing advocates, from a dozen or so of us who use complex rehabilitation technology, to clinicians like Gerry Dickerson, who have dedicated their lives to elevating – and, truly, creating – the field of applying complex rehabilitation technology to increase the quality of life for those of us with severe disabilities.
However, what struck me most about this spring’s lobbying effort, coordinated by NCART, was that we all are ordinary people doing the extraordinary – there’s no magic to making a difference, just dedication and tenacity. I mean, Mickae Lee and Jen Westerdahl are both single moms (and Mickae works two jobs!), yet they scheduled and coordinated hundreds of meetings for our lobbying day, literally staying up till all hours for weeks before the conference to make sure the schedule was complete. That’s the beauty of a democracy – anyone can help foster change with good ol’ effort.
I’ve been on the Hill quite a bit, more than maybe even I presumed, as in a few of my meetings, I was greeted with, “Mark, back for your semi-annual visit, are you?” See, the way it works is that anyone can make an appointment to meet with an elected official or staff (more commonly staff), and in our case with a proposed bill like H.R. 942, we have 15 minutes or so to make our pitch – and a lasting impression.
As a Pennsylvanian, that’s usually my lobbying territory, where I met with my two senators and four congressional staffs. Sometimes I’ll sneak in my old state of California, if needed. Nevertheless, six meetings in one day is a pretty intense schedule, where the size of Capitol Hill and its buildings makes it a race from one meeting to the next. I mean, when you have 15 minutes to get from the Rayburn building on one side, to the Dirksen building across the Hill, you put your power wheelchair in high gear!
I had the pleasure of tag-teaming with Matthew Clark, a wheelchair user from Philadelphia, and he’s emblematic of what I’d describe as the truest advocate – it all comes from the heart, just a guy making a difference. You’ve likely never heard of Matthew, as he’s not in the pages of New Mobility magazine, nor does he work in the mobility industry. He’s a photographer and filmmaker who told me, ”I do this [advocacy] because it’s the right thing to do.”
And, Matthew is astoundingly good at lobbying. Going into a congressional office with him was like walking onto a basketball court with Michael Jordan back in the day – you know you’re in the trenches with the best of the best. For starters, he has an I.Q. that has to be 140 or more, able to recite complex facts and figures by the dozens, making the H.R. 942 fact sheet obsolete. And, then, add to that his wit and charm, and he’s untouchable in meetings, winning everyone over with his eloquence and sincerity.
So, as lucky as I was to end up partnered with the best consumer advocate I’ve ever worked with, I wondered how he ended up on the Hill that day? The answer, $10. As he shared with me, long-haul buses travel between Philadelphia and Washington DC, and much like with airlines, the fares fluctuate, where he scored a $10 bus ticket down, but was admittedly disappointed that it was $19 to return home. Literally, Matthew was taking Capitol Hill by storm, advocating for millions of Americans with disabilities, on his own time and effort – all for $29.
Again, everyone lobbying on the Hill that day had his or her own remarkable story. Yet, when I think about Matthew Clark, he embodies advocacy at its best: One person, one voice serving the interests of millions. And, it proves such a valuable lesson to all of us. You don’t need fame, fortune, or formal training to help create legislative change – just the self-initiative to get involved.
By Mark E. Smith
The two symbolic, ground-breaking shovels that sit in the corner of his office catch my eye. One is gold-plated and the other, chrome. They’re the type of shovels that dignitaries and politicization use to pose with in a dirt patch when kicking-off a new development project. And, they’re leaning in the corner of his stately office, which clearly has not been remodeled since the 1980s, right down to worn leather chairs. But, all is spotless clean – even the shiny shovels.
I could picture him back in the day, likely slamming one of those shovels onto a board room table, and saying in a larger-than-life voice to his executive team, “Are we going to dig our own grave, or dig our way to the top?”
Yet, now he’s a kind, calm, soft-spoken older man, a proud grandfather. And, as he talks I feel a bit writer and a bit grandson. “Never trust words,” he says. “Flow charts, a good dresser, a great speaker – never trust any of it. Only trust results. When someone delivers, trust that. Trust whomever backs you in the trenches.”
And, for a moment, my eyes drift back to the shovels leaning in the corner, and I think about how true his words are, not just in business, but in life. As a writer and speaker, I’m a contradiction in that I’ve always distrusted words. It goes back to my mom and her always lying about not being drunk, my therapist would say. And, while maybe that’s where my distrust of words likely began, it runs more universally than that. I’ve learned that when we truly care about others, we don’t just say it, we show it. Show me you care about me, show me you love me – don’t just tell me. I’ve fallen for words too many times, only to be hurt by them – empty, hollow in the end, the words, me, all of it. You have, I have, we all have. And, what’s insane is that we continue wanting to hear them, the words, and believe in them – I’ll pick up the pace, I’ll make things right, I’ll quit doing it, I’ll change…. But, what’s any of it mean if there’s no action or effort behind the words?
The answer is, nothing. Here’s the fact: when we look and don’t listen – that is, when we gauge a person on what they do, not what he or she says – it’s the ultimate truth of what we mean to that person. No matter if it’s an employee, friend, or love interest, follow what one does, not what one says. Lots of people will say they’re there for you; but, who’s truly there in the sincerest ways? It quickly becomes a short list, doesn’t it?
And, yes, it’s a painful realization, but also a poignant one. See, in the process of realizing how adrift we are, alone at sea, we likewise realize who’s truly there for us, not in words, but in heart, soul, good times and bad. Words are so often an empty gesture; but, actions of the heart always prove true intent. Grab those who put their hearts and souls out there for you – hold on to them, truly trust in them, no longer adrift but anchored by them.
And, as he continues speaking, I stare at the shiny shovels, and again wonder why any of us still trust in words at all?
PowerchairDiaries 