PowerchairDiaries

What’s in a Question?

By Mark E. Smith

If you ask my colleagues what I’m most known for in our interactions, most will tell you, asking questions.

It’s true. Most of the time I leave my office, it’s to go ask someone a question. No, not ordinary questions, but usually ones that make us both think, further question, and explore a topic – and ideally find innovative solutions. The result is that we both not only learn, but we often discover insights into improving our company and its products and services in some way. What I’ve learned is that great ideas rarely just happen; rather, they begin with a single question – the whys, hows and what-ifs?

For me, having lifelong cerebral palsy has taught me a lot – invaluable lessons that I’ve grown to recognize outweigh the intrinsic challenges. And, among the greatest lessons has been to never accept any presented limitation, but to question it, the whys, hows and what-ifs that move me beyond it. The fact is, in order to succeed with disability – and in all of life! – you have to be a master problem solver, and it all begins by questioning what is in order to get to what can be. No one needs to be a rocket scientist or super hero to overcome seemingly insurmountable obstacles. One merely needs to question a seeming status quo until an action-based solution is found.

I work in the power wheelchair industry, and over the past nine years, multiple Medicare funding cuts have impacted mobility access for those most in need. At this writing, another cut is waiting in the wings, and so a petition was started by a small group in our industry, where 100,000 signatures were needed within 30 days to have the White House consider the issue – a possible stop to the cuts. Unfortunately, the petition failed, with less than 30,000 signatures.

As a result, I’ve been hearing mumblings from some that the failed petition just proves that those with disabilities don’t care what happens to mobility funding.

What I haven’t heard is anyone ask a vital question: why aren’t those with disabilities more inclined toward advocacy? If you want 100,000 signatures, the answer to that question is key.

So, I’ve been exploring that question – why aren’t those with disabilities self-advocating to a successful level? – and that single question leads to profound causations and solutions. See, statistics tell the real story:

Only 7% of those with disabilities own their own home, compared to 69% of the general population. Why? Because the median household income of those with disabilities is half of that of the general population, and those with disabilities are three times more likely to live in poverty. Why? Because those with disabilities are 1/2 as likely to have completed high school, and only 1/3 as likely to have a bachelor’s degree, as those without disabilities.

When we follow those series of questions, it becomes evident that those among us with disabilities aren’t involved in advocacy and the political process because we’re among the poorest, least educated, and ultimately disenfranchised groups. Yet, the questions also reveal to me a solution:

If we want to have a culture of solidified disability advocates – and more importantly, socio-economic equality – we need to skip petitions for now and address the root causes. We literally need to focus on programs that help high school students with disabilities transition from high school to college, then college to the workforce. Once you have a population succeeding, not just surviving, then you can have a galvanized constituency.

Now, I’ve just taken you on a wild ride where a single question led to profound issues and vital solutions. But, that’s the eloquence of asking questions – you never end up where you started. In our relationships, in our careers, in our hearts, if you want to grow in any way, start with a question. It’s not My relationship is struggling; it’s Why is my relationship struggling? It’s not I’m dissatisfied with my career; it’s What would I love to do? It’s not I can’t do it; it’s What if I try this? We need to have the courage to ask direct questions that all but force us to act.

Indeed, questions are the sparks that don’t just ignite areas of our lives, but possess the power to change them.

At the Heart of Smiling

Every time you smile at someone, it is an action of love, a gift to that person, a beautiful thing. ― Mother Teresa

By Mark E. Smith

My father-in-law, a retired pastor, told me a great story over dinner.

He said, “My best friend, Gary, and I were both pastoring, and I noticed that at the end of services, everyone hugged Gary, while they only shook my hand. So, I asked Gary why that was? Gary replied, ‘You stick out your hand, while I open my arms….’”

What the two pastors were really discussing was that we receive what we offer. If you want a hand shake, put out your hand and you’ll get one. If you want a hug, open your arms and you’ll get one!

For me, I’ve always smiled. From as young as anyone can recall of me, I was always smiling. Part of it is my innate disposition, but the other part of it, as I’ve come to understand, is an appreciation for life. I’ve been through my share of adversities – and will forever struggle with some – and it’s gratitude toward all of it that keeps a joyful smile on my face.

However, smiling is more than only about my disposition or gratitude. It goes back to the conversation the pastors had. Truly, if you want to see the world smile, smile at it. I often share this story. I was at Walmart with my sister several years ago, and she noted how friendly and nice customers and employees were to me – the complete opposite of her experience of everyone being somber. I asked her to watch as we continued shopping. Per my usual, I smiled and made eye contact with complete strangers where that led to an exchange of a friendly how-are-you? “Just smile at people,” I said. “It changes everything.”

I’m at the point now where I smile at pretty much everyone. On my route to work, a crossing guard shared with me that she learned who I was by asking a friend in the neighborhood, “Who’s the guy in the power chair who’s always smiling?” If I’m at a stop light in my van, I’ll smile at those in cars next to me, and it’s amazing how a gruff guy’s demeanor will change or a woman will blush – a smile is a powerful exchange.

And, there’s science to this all. Firstly, smiling triggers a happiness feedback loop in our brain, so whether we smile because we’re happy or we become happy because we smile, it works. Secondly, numerous studies have shown that smiling increases our success, from home life to career. The average person smiles 20 times per day, whereas ultra-successful people smile 40 to 60 times per day. Smiles are warm, inviting and sincere – they’re a people magnet because we’re drawn to happiness.

Of course, I do run into being stereotyped sometimes based on my smiling. Well-meaning individuals noting my cerebral palsy come right out and ask, “How is it that someone in your predicament can find a reason to smile?”

I just smile and reply, “A life where you smile at the world and it smiles back at you is a fortunate predicament to be in….”

No More Second Chances

Smith Wedding Reception, October 10, 2015

By Mark E. Smith

On the surface, my life is one of second chances. In fact, from the moment of my birth, not breathing, resuscitated, then given only hours to live, my life started with a second chance.

As my life went on, second chance after second chance all but saved me from countless perils that could have stopped my life in its tracks. I went from lying on therapy mats in a special school to being mainstreamed in public school; I went from virtually no mobility to having a power chair; I went from moving into a garage to moving into my stepfather’s home; and, I ultimately went from not having a father to being among the most dedicated fathers myself. Indeed, if it wasn’t for second chances, my life would have derailed at so many points.

However, now at mid-life, my experiences and insights have allowed me to realize that second chances don’t truly exist beyond cultural mythology. Life doesn’t offer second chances. We can’t erase where we’ve been, we can’t change what’s happened, and we certainly don’t get do-overs. No, life is a journey, a linier equation, where all that we’ve experienced shapes who we are, where we are – the painful times, the prosperous times, the losses and gains, the tragedies and triumphs all serve a masterful purpose.

The notion of second chances suggests that the firsts were an error, not meant to be. Yet, without whatever came first – the tragedies, the mistakes, the failures, as commonly labeled – we could never have what came next, we could never continue on the journey that makes our lives… well… our lives. And, when we remove the notion of second chances from our beliefs, and value all aspects of our life as a linier journey, it gives meaning to all, turning even the most painful parts of our lives into purposeful, into having reason, into healing and success.

See, if we don’t look at life as second chances, but rather as what’s meant to take time to unfold and come to fruition, it’s impossible to be bitter, resentful or regretful of the past. Instead, we become intrinsically thankful not just of where we are, but likewise where we’ve been. Sometimes life’s journey is not to be questioned, but lived.

Our Truest Voice

By Mark E. Smith

I recently watched a Ted Talk by a public speaking coach who gave the secrets to being a great speaker. She spoke of relaxed posture. She spoke of soft breathing. She spoke of using your diaphragm. She spoke of controlled speech patterns. And, she spoke of overall body composure. Really, based on all she covered, I should never roll on a stage or speak in front of a group ever again because my cerebral palsy prevents every technique she noted. According to her, I’m the antithesis of a speaker, her worst nightmare.

Yet, over the past 25 years, I’ve spoken to more groups than I can count; I’ve made a remarkable number of TV appearances; and, I speak formally within my company in many capacities every day – all with tremendous efficacy. So, how do I – as one with severe cerebral palsy – defy the rules of the experts and achieve success in my career with so much speaking?

The answer is, I am just me and I always speak from the heart. I don’t need to be a polished robot, nor do I need to try to be someone I can never be. When you hear me speak – sometimes labored, sometimes slurred, sometimes spastic – you’re getting the real me. What greater gift can we give others than the real us, perfectly imperfect, speaking from the heart?

Among the reason why I address groups within our company is because I’m so passionate about what we do and I’m so inspired by the profound difference each employee makes in the lives of our customers. And, so one of my greatest privileges is speaking to groups of our employees, both weekly with new hires, and monthly at our birthday lunch, where we celebrate employees’ birthdays.

It’s my pleasure to share with you one of my talks with our employees. What I want you to note is that I’m clearly not what that speech coach envisioned. Rather, I’m real and imperfect – the two traits that we should all embrace to make a true impact in the lives of others. There’s no one more captivating than who we truly are.

Crank up the volume and enjoy this 12-minute talk:

Intersection of Purpose and Hope

By Mark E. Smith

I was recently in Boston, working a consumer trade show for disability-related products, including my company’s power chairs. If you’ve never been to Boston, it’s a stunning city – from the architecture to the cobblestone streets to the harbor – and I found myself in Boston at an amazing spot: the intersection of Purpose and Hope.

No, the intersection of Purpose and Hope isn’t a literal street corner in Boston, but it can be found in any city, and in any of our lives. For me, in Boston, it was found in my meeting a seven-year-old boy with cerebral palsy.

He reminded me a lot of… well… me at that age. He was a little guy, squirming all over the place in a manual wheelchair due to spasms and tone, symptoms of cerebral palsy. And, the reason why his family was at the show was because he needs a power chair to keep up with his siblings and peers – read that, to just be a kid.

We had our top-of-the-line power chair there in a pediatric seat size, and as I soon realized, uncannily as if made to fit him exactly. To address his involuntary body movements, I had our reps unbolt lap belts from other units, and we got him seated, strapped in and stable. And, like he’d been in a power chair his whole life – or, more aptly, a NASCAR driver – off he went!

I looked at his parents’ faces, their eyes, knowing how bittersweet these moments can be. On the one hand, a parent wants his or her child to have all of the independence in the world. Yet, no parent wants his or her child to have a lifelong disability. A child going into an advanced mobility device can be a parent’s emotional tug-of-war.

However, his parents understood the liberation he was gaining, and their expressed emotion was joy as he roared around an empty part of the convention hall.

“He’s going to be a little terror,” his mother said with a huge grin. “…From the playground to chasing his brothers on their dirt bikes.”

For me, I was blessed in that moment in living my purpose as one who’s found so much emotional reward in my career of serving others who are on the path I, too, have traveled. And, the family expressed so much hope toward the quality of life a power chair will bring to their son. All of this is the breathtaking beauty of the intersection of Purpose and Hope.

Where’s that intersection in your life right now? Sometimes we bring our purpose to the corner, and sometimes we come needing hope. I’ve been on both sides of the corner. Regardless, when we simply have the initiative and courage to place ourselves at the intersection of Purpose and Hope, all lives involved are elevated.

Buckley, the Serve-ish Dog

By Mark E. Smith

In Tajikistan, a man gets a goat as a dowry. Me, I got Buckley, the Serve-ish Dog.

The way this all started was that years ago, Buckley was to be a serve-ish dog to my now step daughter. However, as it turned out, while she loves cartoon dogs, she’s not keen on real ones. BINGO is a hit; Buckley, not so much. So, Buckley got to live a life of leisure, sleeping, sunbathing, reading tabloid magazines. He was like a Kardashian – he might have had talent, but why bother getting off of your butt when there are pizza scraps to eat.

So, it occurred to my fiancee and me that when she moved from California to Pennsylvania, I had a disability (actually, we already knew that part) and with Buckley being so well trained as a serve-ish dog, it was a marriage made in Heaven – although, technically, I had to marry Holly, not Buckley. Therefore, we bought Buckley a First Class ticket, minus champagne, and flew him out. We’ve been inseparable ever since.

It was really perfect timing. Rosie the English Bulldog passed away months ago, and I was ready for a new dog, missing that companionship. Interestingly, Rosie the English Bulldog was a serve-ish dog, too, only she had it backward – we had to serve her. I don’t want to sound racist, but English bulldogs are like that.

I’ve spent a month now working with Buckley and he’s doing great. It turns out, he has a brilliant Pavlovian mind – that is, he’ll do anything for a bacon treat. If I have a bacon treat on my lap and I say, “Buckley, tie my shoes,” he’ll do it, which is impressive considering that he lacks opposable thumbs.

He has an official service dog vest, and when he wears it, he’s like a cop in uniform, puffing up his posture like he’s of importance. However, I have yet to see him racially profile anyone. Rather, in public, he sticks by my side, follows every command and is a legitimate, behaved service dog. I’ve learned, though, that he’s far smarter than the general public. He’ll lie motionless beside my power chair in a bustling restaurant, wearing his neon-green vest that says SERVICE DOG in giant reflective letters, and giddy people come up and ask, “Oh my goodness, is he a service dog?” I have to stop myself from replying, “No, he’s a Shetland pony in a Halloween costume – want a ride?”

I’ve also learned that there’s no official registration or standard for service dogs, and legally they can go anywhere you go. If questioned, all you have to say is, “He’s my service dog,” and you’re sitting side-by-side on a roller coaster at Disney World (Buckley was such a good sport, wind blowing in his face!). As such, you encounter individuals ranging from those with lifelong visual impairments to wheelchair users to super models with anxiety all using service dogs. And, there’s a huge range of training for service dogs, from two-year schools, to no training at all (hence, super models with anxiety). Buckley lands in-between. If there’s an educational hierarchy for service dogs, his degree is from the University of Phoenix. He’s trained, but not a West Point graduate.

Interestingly, my peers with service dogs are the worst snobs. They’ll come right out and ask me, “Is he a real service dog?”

I now reply, “Buckley, tie my shoes. …Does your mutt do that?”

First Drafts

By Mark E. Smith

When my daughter told me that her first reading assignment in her college freshman English class was Ann Lamott’s “Shitty First Drafts,” I was thrilled. Now there’s a professor who knows how to teach!

“Shitty First Drafts” was never a stand-alone essay, but an excerpt from Bird by Bird, Lamott’s 1994 book on writing, aimed at writers living the writing life, and goes back to Hemingway who coined the subject of shitty first drafts. Yet, Lamott, who you might recognize as a very pop-culture and, interestingly, irreverent Christian writer, infused Bird by Bird with life lessons, where I, for one, have always viewed “shitty first drafts” as another one of Lamott’s ultimate metaphors for life.

Lamott’s assertion is that, as writers, the only way we ultimately get to clarity and success is by having the courage to embark on shitty first drafts:

…All good writers write them. This is how they end up with good second drafts and terrific third drafts…. Very few writers really know what they are doing until they’ve done it. Nor do they go about their business feeling dewy and thrilled. They do not type a few stiff warm-up sentences and then find themselves bounding along like huskies across the snow. One writer I know tells me that he sits down every morning and says to himself nicely, “It’s not like you don’t have a choice, because you do – you can either type, or kill yourself.” We all often feel like we are pulling teeth, even those writers whose prose ends up being the most natural and fluid. The right words and sentences just do not come pouring out like ticker tape most of the time.

Chances are, you’re not a writer. But, if your life is like mine, it’s certainly checkered with shitty first drafts. As Lamott puts it, we typically have no idea what we’re doing until we do it. And, I don’t know about you, but I can’t think of hardly any success in my life that didn’t begin as a shitty first draft – from living with my disability to school to career to finances to relationships to working out, and yes, writing. In fact, I have shitty first drafts every day, where based on my disability, two or three tries at any daily living task is the norm. However, I’m always thinking, learning, getting wiser as I do a task, so rather than getting frustrated, I hone in on getting better, improving with each “draft.”

When it comes to our lives, it’s vital to give ourselves permission – and have the courage! – to have shitty first drafts, namely because, as Lamott puts it, they lead to good second drafts and terrific third drafts. Do you know how I learned about finances and relationships, two cornerstones of life? Shitty first drafts! In my 20s, I got into debt up to my ears, by my 30s I paid everything off, and today I haven’t used credit in over a decade, living totally debt free. Relationships have had a similar path, having to learn about love through a lot of painful trial and error, but I think I’m a better partner today than I was 20 years ago. There are so many aspects of life that generally start with shitty first drafts; but, if we’re cognizant, self-aware and dedicated to growth, those shitty first drafts aren’t shitty at all – they’re assured paths to ultimate success.

So, as my 18-year-old daughter moves through her first semester of college, she’s not just reading about shitty first drafts, she’s undoubtedly living them at times, as we all have and do. Yes, it’s hard as a father not to jump in and correct my daughter’s “shitty first drafts,” but I know that by allowing her to learn and grow from them, her second and third drafts – read that, her accomplishments – will be amazing.

Who Really has the Power

By Mark E. Smith

I thrive on possessing power. But, not in the way you might think. In my business and family, I, in fact, practice the opposite, seeing my roles as humbly serving others. And, yet, when it comes to me, power is synonymous with personal accountability. I learned at an early age that in order to have power, you must be personally accountable; and, if you’re not personally accountable, you have no power. You can control life or life can control you. It’s initially circumstance, but ultimately choice.

It all started with my failing biology. I was in high school and flunking badly, namely because I wasn’t doing my homework. I wanted to do my homework, but my home life was a mess. My mother and stepfather made our home Hell. I came home from each day to my mother in the most horrendous conditions – always drunk, but sometimes high, overdosed, manic, or suicidal – and then my stepfather came home drunk, where they fought and smashed up the house. My mother loved to break things and my stepfather loved to scream, and it made for long nights. On top of that, I was struggling to develop my independent living skills due to my cerebral palsy. How was I to somehow do homework with so much volatility in my life?

I lay in bed looking at my report card one night feeling ashamed because it was dotted with Fs and Ds. I’d worked really hard to be mainstreamed in an era when it wasn’t common practice, and I was watching it all slip away. I tossed the report card on the floor and decided my parents and cerebral palsy weren’t going to dictate my grades. I had the power, not them.

I went from a failing student to the honor roll the next report card period by literally locking my bedroom door in the evenings and letting my parents trash the house and there lives as I focused on my homework. I remember typing my homework while trembling and crying as my mom pounded on my door, screaming. Still, I wasn’t giving her power over my life. My grades were my responsibility – and I had the power to succeed over all.

Those years of finishing high school with A’s didn’t make me smarter, but they did make me wiser. I learned that our lives, in the long term, aren’t dictated by anyone or anything, but us. Circumstances may set us up as victims, but we can choose to be victors.

Ultimate Rebellion

By Mark E. Smith

In preparation of my daughter leaving for college, we cleaned out closets. To my daughter’s delight, we found a stash of 20-year-old newspaper stories on me. One was titled, “Limbaugh of cripple guys.” No, it wasn’t because I was a right-wing conservative – far from it – but because I had a pretty popular voice in mainstream columns and articles in the San Francisco Chronicle and alike that intertwined disability culture with all sorts of topics. When Ghirardelli Square was being pressured by those around the newly-enacted ADA to spend $2 million dollars to build a ramp right around the corner from an existing up-to-code ramp, I was the only one with a disability to write that such money should go toward more rational causes like addressing the city’s homeless problem. Those with disabilities were outraged at me; the general readership applauded me. I, however, didn’t care what anyone thought. I was simply a writer who had my own sense of social justice, and wasn’t afraid to voice it – with a little youthful rebellion mixed in.

I recently took my daughter to see “Straight Outta Compton,,” the bio-pic about N.W.A, the pioneering rap group that was truly misunderstood – and took both a page from the Civil Rights movement decades before and foreshadowed 21st-century race relations. I remember hearing N.W.A.’s “Straight Outta Compton” album in 1988 – and have listened to it ever since – thinking, This is a brilliant, brave, rebellious protest album above all else.

F@ckin with me ’cause I’m a teenager
With a little bit of gold and a pager
Searchin my car, lookin for the product
Thinkin every nigga is sellin narcotics

Those lyrics placed in context of what we’re seeing today – the incredibly painful, strained relations between the police and, namely but not exclusively, the black community – prove historically accurate and eerily prophetic.

The next eve, I was with my fiancée at a jazz festival, where so many were of my generation and older, some having lived during the passage of the Civil Rights Act, and everyone sat neatly in rows of folding chairs, the bands cordially playing. And, I thought, Where’s the rebellion, where’s the social commentary from the diverse stage that black lives matter, especially given the events of recent, not to mention history? Even my daughter’s pep band at George Mason University has taken to playing a very political Rage Against the Machine song. Come on, Spyro Gyra, pound out an instrumental of N.W.A.

Then, as I sat there pondering all this, it happened. I saw a breathtaking example of the truest form of rebellion, about not being constrained by the social conformity of sitting in perfectly-formed chairs, listening to politically-correct musicians, following the other sheep, but about being true to what you stand for, who you are, what compels your soul.

In the row in front of us, a young lady with a progeriod syndrome – bald, aged facial features, frail stature – walked out to the aisle with who I presume was her father, and they began getting down, dancing. I bet many at the event would love the self-freedom, the rebellion to just follow their soul and dance in front of hundreds of composed strangers in perfectly-aligned folding chairs. But, she was the only one who did.

I understood at that moment that the spirit of true rebellion comes from one simple truth: no matter if you’re N.W.A or that dancing young lady, true rebellion is when you have the courage and the confidence to just be yourself.

Jumping Out of Airplanes

By Mark E. Smith

Have you noticed that when it comes to making big life decisions, there’s rarely a “right time,” and that those who wait for the right time, rarely end up making such life changes? Why is that?

Typically because there’s never a right time when it comes to making big life changes. Yet, so many of us create right-time rules that seem responsible, but really prevent us from ever making big moves – because the fabricated right time never comes. People set the most unrealistic prerequisites that they ultimately sabotage what’s truly important, never making big life moves. I’ve had kids – there’s never a right time, but it always remarkably works.

My fiancée and I, as responsible 40-somethings with kids – one off to college, the other, second grade – have had the “right time” all figured out. Being bicoastal, we went between the two coasts for almost two years, ultimately planning every “right time” detail for her move to the East Coast. Details surrounding houses and dogs and kids and finances went on and on, and every time we tried to figure out the “right time,” something logistical wasn’t the right time. We began in May working on the move with August being the “right time.” However, based on our right-time ideals, certain logistical aspects simply hadn’t worked out. What we’re we to do? Put off the move, put off the wedding, ration our love until the intangible “right time” somehow appeared, maybe next spring?

No, we decided the only right time was now. I mean, really, with houses, dogs, kids, finances and on and on, there’s no right time! We just had to do it. We didn’t have it all figured out, but got creative and focused on what was most important, what was at our core desire: to bring our family together. So, on a Sunday night, we booked one way plane tickets, and declared three weeks from then was the “right time” to move. Of course, it wasn’t logistically the right time – but it never would be! – but it was emotionally the right time.

And, that’s what the right time comes down to – that is, are you emotionally ready to make a life changing decision? I don’t care how responsible you think you are, if you play the waiting-for-the-right-time game, you will almost never accomplish your goals. Accomplishment comes from doing, not waiting. You have to have the courage and the confidence to go for it.

See, there’s only one way to skydive – you jump out of an airplane. If you wait, you just end up back on the ground, sitting in an airplane seat. However, if you want to experience the awesome thrill of skydiving, you just have to jump.

Life is like skydiving, if you wait too long, opportunity passes you by. However, if you know what you want, and you take a healthy leap of faith, you’ll be astounded at the rewards that you experience.