Mark E. Smith – Page 24 – PowerchairDiaries

The Power of Abandonment

Mark Sit Skiing 1987 — Mark Sit Skiing 1988

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….

Heavy Sky

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.

It Gets Better

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.

Good Deed, Punished

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!

The $29 Advocate

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.

Empty Words

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?

Find A Way

By Mark E. Smith

I’m not a miracle worker, but no matter what problem you throw at me, I can tell you in three words how to solve it: Find a way.

If there’s one life-changing, ever-empowering truth that disability experience has taught me, it’s that there’s always a way to resolve or accomplish what we wish – we just have to find a way to do it. It may not be initially evident; it may not be easy; it may not seem practical; and, it may even seem ludicrous. Yet, to any challenge or situation in life, there is a way to resolve it – we just have to find the way.

I often share the story of my shoe laces. For the first 25 years of my life, I couldn’t tie my own shoes based on my lack of dexterity and coordination. Now, in the grand scheme of life, not being able to tie one’s own shoes may not seem like a big deal – after all, there are far more serious limitations in life – but it was one of the last pieces to my physical independence. The ability to tie my own shoes meant the difference between being able to fully dress independently or forever rely on others.

For years, I tried all sorts of shoes, with all sorts of practice. But, alas, I could never coordinate shoe laces well enough to tie them. I even got to the point where I could make the loops, but as I went to cross them, all fell apart. It was forever frustrating, to say the least, right down to my brother having to tie my shoes on my wedding day.

Yet, after years of practice, trial, error, and failure, I was so close to tying my own shoes that I knew that I could do it – I just had to find a way. And, so I reanalyzed my process, and realized that where the issue was, was that when I went to cross the shoe lace loops, my poor coordination over-extended the shoelaces, causing them to come undone. If only I had more shoelace length to work with, I could cinch the loops before pulling the ends out…. And, in that was the answer: get longer shoelaces! Indeed, I found a way, and till this day, 72” shoelaces are the solution I use to tie my shoes. It wasn’t that I couldn’t tie my own shoes; rather, I simply had to find a way to do it.

Finding a way is amazing because it empowers us to find a solution to any problem rather than accepting it. A task or situation may seem impossible, but if we truly believe that there is a way to successfully solve it – we just have to find it – it inspires us to not just try, but try harder, as well as go into situations with a can-do attitude.

I admit, I’ve become pretty skilled at finding a way, where when I encounter a challenge, I don’t shy from it; rather, I go into find-a-way mode. I recently wanted to interview a business titan for a book I’m writing. The individual is bigger than life, worth an estimated $2-billion, and has an insanely busy schedule. I remember thinking, How am I going to track this individual down, let alone get a several-hour interview? The answer immediately struck me: Find a way.

I thought for a moment who might have the individual’s personal contact information – as I wanted to get direct to the source – and with a single email exchange, I scored both the individual’s and the individual’s assistant’s contact information. Bingo! I then sent an email to the assistant, and within 20 minutes, I had an interview scheduled. I flew to the individual’s headquarters, and ended up with an amazing two-hour interview. If I had told most folks who I wanted to interview and where, they would have thought it crazy. There’s no way you’ll pull that off, most would have said. However, knowing that I just had to find a way to pull it all together made the seemingly impossible ridiculously easy. There I was, having flown partly across the country, sitting in the individual’s stately office, hearing amazing, never-before-told stories to include in my book.

See, that’s the eloquence of find a way – it immediately makes the impossible totally plausible. Are you having difficulty accomplishing a goal? Find a way. Are you struggling to get the results in a particular aspect of your career that you want? Find a way. Do you want to make major changes to your life? Find a way. Do you want to live your dreams? Find a way!

No, anything truly worth striving for isn’t easy, nor without complications. But, if it’s truly worth doing – if you’re truly dedicated to accomplishing it – there’s a way to do it. Find it. Live it. Never give up hope, as there’s always a way….

Dream On

I never doubted that equal rights was the right direction. Most reforms, most problems are complicated. But to me there is nothing complicated about ordinary equality. -Alice Paul

By Mark E. Smith

When I was born, there was no humility in disability, just the medical authority calling people like me the vegetative minority. No, I couldn’t walk, speak or crawl; but, with my toddler eyes and ears, I saw and heard it all. Dream on.

And, as I grew, no one knew what my fate would be, a prognosis based on speculative hyperbole. But, still, with ignorance, everyone all labeled me – crippled. …Yep, that was me. Yet, inside hid the person I knew I could be. And, at night, when I cried — trapped by an ignorant society — even my mother couldn’t comfort me. Dream on.

When I was seven and sent to the back of the church, I was taught children like me didn’t go to Heaven. How could a God, who I came from, not let me with a disability into his kingdom? It wasn’t some Father’s place to say we aren’t anointed by the Lord based on physicality, when inside me, I knew I was appointed, worthy of spirituality. Dream on.

Mainstream education brought taunts and stares – kids who didn’t know better, teachers who didn’t care. I could read but I couldn’t write, so I bought a thrift-store typewriter and clicked the keys, teaching myself to type one night. And the words that flowed were bold and grew, and I knew I had something to say to the world – even at eight years old. That’s right. Dream on.

My family fell apart, ignorance toward my condition stung at my heart, and back in those days, a step into a store meant I could get in, and they had the right to refuse me service, a hypocrisy to no win. America the beautiful, the bold and the brave; but, my wheels of steel made everyone my master, gave me little more than the rights of slave. A country founded from oppression, surviving wars and the Depression, and I still I faced daily oppression? Stigmas did follow me, and I felt this: Where was truth in equality? Dream on.

But, for me segregation didn’t stop my education, and I wouldn’t give up my mind’s elevation. Heart strings tatter, but a spirit that wouldn’t shatter, I’d just move on; different day, same song. Things went wrong, but I’d move on. Dream on.

I remember at the prom when she wouldn’t dance with me, then going home that night, questioning my sexuality – for months it went on, the depression, a repeated song. I awoke in the hospital despite the pills taken, and it registered with me that I wasn’t a soul forsaken. I was who I was and just had to be me, why drown in self-loathing when I could swim in a sea – of acceptance. That had to be me. Dream on.

It all got easier as I went, worth the sweat and the tears that were spent – but who knows. I was always told that life goes as it goes till we grow old, and the forces that once held us down soon push us up from the ground. Our weaknesses become our strength, and those who’ve wronged us, we should thank – adversity from diversity is a character that we build, and successes that are earned create lives that are willed. Dream on.

Still, think what you will, but when I travel from the Pacific Northwest to Capitol Hill, there’s ground to be gained, equality sustained, where one nation for all is exactly where we fall – short. And, until everyone – regardless of disability, gender, sexual orientation, race, or religion, of unity, not division –is seen as humanly proficient, not different or deficient, I will continue to question America, the bold, the beautiful, and the brave as it holds up discrimination and prejudice to save – yes, even in this so-called progressive age. Until there’s equality for all, as a nation we fall. But, as for me, I’m optimistic. I dream on.

Empty Chairs

There’s a grief that can’t be spoken. –Empty Chairs at Empty Tables, Les Miserables

By Mark E. Smith

I’m really striving to keep a super clean house these days. It’s always been tidy, but after 11 years of living there, dust bunnies and cobwebs collect in corners. However, my close friend sneaked into my house while I was away working an Abilities Expo, and did a dramatic deep cleaning, where my kitchen looks new again. So, I’ve been doing my best to keep the house spotless.

Yet, my 16-year-old isn’t so mindful. She has a bad habit of piling jacket after jacket on a kitchen chair. And, with her virtually never home anymore – at school during the day, and drama rehearsal, band practice, and hanging out with friends at night – I’m the cerebral palsy version of Ozzy Osborne, with this over-the-top career by day, but puttering alone in the house in the eves, somewhat lost beyond my work.

So, amidst my immaculate kitchen, I saw my daughter’s myriad of coats, sweaters, and hoodies once again piled on a kitchen chair one evening, and I got really mad. How come she can’t just put these jackets in her bedroom? I’m stuffing all of this in a garbage bag, putting it on the curb, and teaching her a lesson!

Of course, I didn’t really do that. Instead, I went and lay on my bed, surrounded by the silence of the house. And, when my daughter got home around 10pm, I asked her how rehearsal was, not mentioning the jackets piled on the chair.

A few days later, I was working on a project, and a distant colleague raised a very trivial issue, one of no real consequence other than to get a rise out of others. “Why’s he making an issue of nothing?” I asked another colleague.

And, she said among the most profound insights, “Sometimes when people feel a lack of control over aspects of their lives or careers, they focus on that which they can control, the small things.”

Indeed, we do often focus on the small things that we can control when the bigger aspects seem overwhelming or uncontrollable. In the wheelchair world in which I work, consumers sometimes hyper focus on small details regarding a wheelchair, only later to share how overwhelmed he or she is by the entirety of disability experience, that the small issue with the wheelchair was merely a way to avoid facing the larger issues in life. Similarly, think about how often emotions build up in relationships, where a small issue ends up representing much deeper issues. Even in the movies, think about how often one character wants to tell another his or her feelings, but can’t get the words out, instead rambling about something trivial – it’s a classic cinematic tension builder based on human nature. …It’s true that it’s often emotionally easier to hyper focus on small issues rather than tackle the big ones – especially when we’re not ready or don’t feel emotionally safe doing so.

For me, I immediately thought back to the jackets on my kitchen chair. In the grand scheme, it really doesn’t matter if they’re there. But, as a single dad puttering around my empty house, it’s about all that I felt that I could truly control these days in the larger picture of my parental life. After all, my daughter’s growing up, times are changing, and while it’s all good, healthy, and normal, it’s also a bit scary – namely on my own, as a single dad, where my daughter has been my foremost focus. It’s the realization of, Wow, I’m not caretaker of a child anymore, but father of a wonderfully-flourishing young lady…. and where do I fit into all of this, and go from here?

Of course, I know the logical answers. My role remains vital, where my daughter comes home at night, plops on the big, stuffed chair in my master suite, as I’m already tucked in bed, and I listen to what’s going on in her life, asking questions, sometimes giving advice. Sure, she still needs me very much – just in different ways – and I’m forever there for her.

But, the heart isn’t so logical. It realizes that my little girl is growing up, and soon the jackets piled on the kitchen chair will be a fond memory as she heads off to college. And, there’s both a joy and sadness in that process. So, what I’ve realized is that those aren’t just jackets piled on the kitchen chair, but my own emotions as a father watching his truest pride, joy, and love grow up – and rightfully struggling with it all.

And, so for now, I’ll just leave the jackets on the kitchen chair, not worrying about it, but appreciating this stage of her life – our life – before it changes even more. Why strive to control such trivial aspects when I can just enjoy the more important aspects of life as a father.

Days of Powdered Milk

By Mark E. Smith

People keep asking me about the recent issues – actually, I don’t even know what to call them – at The Scooter Store, leaving a reported 1,800 people out of work on “furlough,” many in a region of the country where jobs are hard to come by.

As I’ve explained to a few, I don’t know any more about the situation than what’s been posted on news outlets. However, what I do know is that I feel deeply for the employees and their families. See, these are 1,800 hard-working Americans, doing jobs as phone operators, data processors, delivery drivers, and virtually every other honest position one can hold. They are moms and dads, some single parents, some working their way through school, most paying bills on Friday and going to church on Sunday. Indeed, for me, there’s not a story about The Scooter Store, but 1,800 stories, ones of how the rent will get paid, ones of keeping gas in the car, ones of, How do we survive as a family from here?

I truly don’t know precisely what the 1,800 families of The Scooter Store are going through, as I have a good-paying career and don’t need to worry about rent or gas these days. However, I come from a very humble background of being poor at times as a child – I remember being in food lines with my mom to get big boxes of government powdered milk and blocks of cheese – and it’s stuck with me my whole life, never wanting to go back to that. And, so, I can only imagine how scary this time is for the 1,800 families of The Scooter Store, including their children.

Beyond the fear of being broke and hungry, I also relate to the all-American work ethic that most of The Scooter Store employees personify. Folks are sometimes kind to note my talent based on the volume of my career, but it’s truly an allusion. Really, at the heart of what I do is simply an intense work ethic, where I keep my mouth shut, my head down, and do the best possible job I can in any given situation. And, I learned long ago to never say no to any type of work, no matter the task or amount – because that’s what it takes to survive. Nashville for a conference? Sure. L.A. for the Abilities Expo the next week? Of course. All of my other duties, and working on a book at the same time? Not a problem – I’ll do it all. I don’t care how heavy the work load, how tough the independent travel, how exhausting the schedule, I’m just grateful to have the work. And, I forever watch, listen, and learn as I go.

See, when you know where you come from – just poor – and you know that you can go back to that at any time, and the only line between then and now is hard work, you work really hard, like your life depends on it – because it does. Mine does.

Disability experience teaches us all a lot in that way, where often all we have to get us through is pure tenacity, and when we rely on that, it’s really all that we need. Talent and luck can get you so far, but just good ol’ back-breaking hard work is among the truest keys to not just surviving but thriving. And, when something doesn’t work out, you’re ready to employ Plan B, C, and D, doing whatever it takes.

My brother is presently a great example of a life fueled by tenacity and back-breaking work. He’s a master tile setter, living in a very expensive part of the country. In order to afford a home for his family, he lives three hours from the city where he works. He gets up at 2am, six days per week, drives three hours to work, sets tile all day, then drives three hours home – generally just to go to bed and get up and do it again. So, why does he do it? Well, he knows the value of hard work and keeping the lights on. We were in government food lines together, and he never wants to go back there, either. He couldn’t afford to give his wife and daughters the lifestyle he wished in the city, so he moved where they could afford, making remarkable personal sacrifices in the process. He’s no genius or extraordinary talent; rather, he’s just working really, really hard.

And, for the 1,800 employees of The Scooter Store, who worked really, really hard, and now find themselves wondering how to pay the rent and keep gas in the car, my sentiment is this: Let’s not allow these families to get lost in a news story about whatever becomes of The Scooter Store; rather, let us each remind ourselves where we come from, and how scary it would be to be out of work, maybe even waiting in a food line for government boxes of powdered milk and blocks of cheese. Most of all, let’s keep those 1,800 Scooter Store employees in our prayers.