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By Mark E. Smith

How fortunate are we when life hands us an unyielding passion? And, sometimes life-sustaining passions stem from the most unlikely of sources. In fact, they almost always do.

At the age of five or so, with severe cerebral palsy, I was blessed to have an occupational therapist place me in a power chair, and I went from a world of confinement to one of liberation at the touch of a button. And, I haven’t let off of the joystick since.

Thirty nine years later, I remain not just passionate about power chairs, but obsessed. I know the empowerment they bring, and I live it. My career revolves around power chairs; my personal life revolves around power chairs; and my friends revolve around power chairs.

But, my power chairs aside, here’s what’s amazing about having such a passion: no one can take it away from you because it’s your intrinsic life force. Lot’s of people like what they do. However, a passion is what you love to do, what you’re compelled to do – it’s who you are – and nothing can change that.

So, at 44, after 39 years of using a power chair – despite all of my life’s accomplishments – there’s still that one, ultimate thrill for me: when I have an awesome new power chair, as was the case this past week, where I immediately become that five-year-old again (a secret warehouse as my personal race track), where I feel an awe-inspiring sense of liberation and empowerment that wipes away all of the complexities of life – and I’m just living my passion to the core.

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purpose

By Mark E. Smith

After talking with my vice president of human resources about the pros and cons of joining the enormous career social network site, LinkedIn, I built my profile, an online resume of sorts. In a mere two weeks, I accumulated over 450 “connections” with people I know from my career.

However, I’ve noticed an aspect missing from LinkedIn, the same aspect missed by most employers and employees in the hiring and career process. While LinkedIn is great at demonstrating what we do and what we’ve done, it’s not a vehicle that conveys why we do what we do – that is, it doesn’t convey the purpose in our lives.

Now, this isn’t a fault of LinkedIn, but a cultural one, where most career paths are more about literal job roles and salary than an individual’s purpose. And, that is a shame because when we don’t feel we’re living to our purpose – as in, I really want to be a photographer but I work in sales because it pays the bills – we lose a part of ourselves, including passion, in the processes. Yes, all of us need to make a living, but when we don’t feel purpose in our lives, it pulls us down, a sense of longing that we carry.

I’ve been very blessed to have career for which I feel purpose. My company manufactures mobility products, and the difference our products make in the lives of those we serve is profound – they allow individuals with severe disabilities to pursue education, career, family and community. On a daily basis I encounter harrowing stories of injury, illness and injustice, and to contribute solutions to individuals’ situations – as one with a severe disability, myself – it fills my life with purpose and passion.

In fact, I see so much purpose in what I do that I’m inspired to constantly spread that passion in my leadership roles. Every Monday at 4:30, I meet with our company’s new employees of all levels and talk about the purpose in what we do. “All of us need to make a living,” I say. “But, at our company, we’re also able to make a difference – that’s a remarkable opportunity in any career.”

Monthly, I also speak alongside our CEO at what we call our birthday lunch, where employees with birthdays in that month gather for a celebration and a company update. I speak to the vital role each employee serves, regardless of position, toward empowering our customers. After all, what’s more powerful than being reminded how you’ve positively impacted the lives of others – that’s purpose.

What’s intriguing to me, however, is when I read anonymous employee reviews online. I see disgruntled comments by our employees – as a large company, we get those – yet, even within the most disgruntled reviews, there’s almost always a positive mention of helping others. No, I don’t want anyone hating one’s boss or feeling underpaid, but the fact that one acknowledges seeing purpose in one’s job is a powerful sentiment.

At the other end of the spectrum, I also spend my days speaking with those who are unemployed. My peers with disabilities have a 75% unemployment rate based on remaining social barriers toward employment. Nevertheless, when I speak with my peers about their employment goals, it’s never about money or status. Rather, when I speak with my peers about their employment goals, they touch upon simply wishing to make a difference – that is, they want to live with a certain purpose.

Now, although purpose and career are a meaningful match – who doesn’t want to feel purpose in his or her work, right? – purpose extends much farther. I mean, the definition of purpose in our lives is that we feel that we have impact. For some, this may mean parenthood, while for others, it’s creating art or volunteering, and on and on. Purpose is what gives internal meaning to our lives. And, when we don’t feel purpose, we can feel a void and longing. So, how do we move beyond that void, into purpose?

A lot of times, it takes courage. My friend and colleague, Bryan, a triple amputee wounded Iraq veteran, shared with me that he felt so much purpose when on the road speaking, acting and volunteering. But, when he was home in Chicago, he felt a certain void, alone in his condo. However, he realized that much of the roles he loved serving – his purpose – were based in Los Angeles. So, Bryan took a leap of faith, packed up, and moved to L.A. His life and career have never been better, where he’s now able to constantly pursue his passions, right down to appearing in the current blockbuster movie, American Sniper.

As we think about our purpose in life, the question is, what do we feel truly fulfilled doing? Then, we must have the courage to live to that purpose. For me, I believed 14 years ago that my purpose was in serving my peers with mobility needs, so I moved across the country to join a small team to start a division of a parent company that subsequently grew into an industry-leading company in its own right. For Charles Bukowski, he worked at the Los Angeles post office as a filling clerk while going home at night to follow his purpose, poetry, going on to be a 20th-Century great, publishing thousands of poems and over 60 books. All of our purposes are different, but the way we achieve them is the same: in our hearts, we all know what ours is – we just need the courage to live it.

Taking Off My Shirt

Posted: February 6, 2015 in Uncategorized

shirtoff

By Mark E. Smith

I struggle with body image. I know that many of us do. Yet, my struggles with body image take a different turn than most. See, while many who struggle with body image want to conceal their body, I want to reveal mine.

We live in a society were outer image is powerful. Yet, it’s rarely accurate. And, that holds true in my case. As a man with severe cerebral palsy, using a power wheelchair – where my posture is contorted and my movements spastic – I am the blatant fragility of disability in the eyes of many. Yes, I dress well, but, ironically, that very form of dress, while socially elevating for most, accentuates the concealment of who I am. In a button-up shirt and chinos, or a suit and tie, I’m the portrait to many as a contorted figure in a power wheelchair, fragile, needing help, and certainly asexual.

And, nothing could be farther from the truth. Underneath my clothes, there’s nothing fragile, helpless or asexual about me. Beneath my socially-concealed body is my true self: masculine, muscular and edgy. While society can project assumptions on me clothed, the truth is told when my shirt comes off, when the real me is literally exposed.

Yet, when we think of my struggle with body image – wanting to be embraced for who I truly am beyond my exterior facade of socially-stereotyped disability – it’s actually no different than anyone else’s, is it? While many of us on the surface wish to change an aspect of ourselves that we feel awkward, embarrassed or even ashamed about based on society’s idealization of appearance, it’s really not what we want at all – that is, deep down, we don’t want to change who we are. No, what we truly want is to live in a society that doesn’t judge or value us based on subjective appearance; rather, we want to live in a society that recognizes and embraces the beauty of who we really are – nothing for us to feel the need to change, and all of ourselves celebrated and seen for who we truly are.

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Ny Mark E. Smith

It happened in an instant. In fact, as one who doesn’t experience anxiety and is pretty calm in virtually any situation, I began to panic. There’s a horrifyingly surreal quality to suddenly becoming invisible.

My family and I went to see the famed Rockefeller Christmas tree, and it was more crowded than anywhere I’ve ever been. However, because my power wheelchair has an elevating seat that places me at 5’7” tall, I worked my way through the crowd slowly but surely, eye-to-eye with those moving about, where people smiled at me, gingerly moving aside as needed for my 24”-wide power wheelchair to pass.

As we got closer to the tree, the crowd became so dense that I couldn’t see the ground, merely following the heads in front of me. Then, suddenly, my power wheelchair dropped down a medium-height curb leading to the tree. Although the unexpected curb startled me, all was fine and we continued to the tree, shoulder-to-shoulder in the crowd, finishing with a classic family photo of the tree behind us.

We worked our way back through the crowd, and I watched carefully for the curb, knowing that while I couldn’t climb it while elevated, I could lower my seat to standard wheelchair height and safely drive up it. As I reached the curb, the crowd continued flowing around me – that is, until I lowered my seat. Suddenly, at typical wheelchair height, my world changed. It was literally darker, more confined and, most shocking to me, I became invisible. While the crowd was moments earlier around me at standing height, now people were slamming into me, falling on me, oblivious to the fact that I was “down there.” I’d gone from a person in the crowd to suddenly invisible and of no stature simply by lowering my seat.

I yelled to my fiancee for some sort of help and in a panic, I charged the curb, clipping people along the way. For me, in among the rarest moments I’ve experienced, it felt like it was life or death – I was both fighting and fleeing.

Once up the curb, I quickly elevated my seat, and as people immediately began safely flowing back around me, I took a deep breath, composed myself, and realized a universal truth: Being invisible to society is terrifying.

For me, that was an experience I’ve culturally known in other ways as a man with a disability. Beyond the change in physical stature I described with my elevating seat, I’ve more readily been de-elevated in social stature at times. However, the de-elevation of who we are – where we become invisible in an instant based on ignorance, stereotyping and discrimination – is a disturbingly universal one.

Imagine how it feels as an African-American trying to hail a cab in a big city, and empty cabs pass you by. Imagine being gay at a dinner party where rhetoric arises, condemning homosexuality. Imagine being a woman shopping for a car, and the salesman only speaks to your husband. Imagine walking into a clothing store as one of a plus size, and the sales people ignore you. Imagine being in bed with your spouse, and he or she turns his or her back to you as you’re trying to communicate. Or, imagine being homeless on a Los Angeles sidewalk, and no one even looks at you as they pass. So many of us can relate with being de-elevated to invisible.

Yes, I was fortunate amidst the crowd at Rockefeller Center that eve because, at the touch of a button, I elevated back to being seen. However, life for many – including me as one with a disability – often isn’t so easily resolved. When we’re dismissed by others and made to feel invisible, there is no button to push. Rather, the experience of being made invisible based not on our character, but based on the ignorance, stereotyping and discrimination of others… well… just hurts.

BARBERSHOP

By Mark E. Smith

No, I wasn’t surprised, but it hasn’t happened to me in so long. Over my 44 years, I’ve seen so much progress toward social acceptance of all, that I simply don’t encounter such situations often anymore.

However, while society at large has changed – where diversity on all levels continues becoming the norm to the point that even using the word is becoming less relevant – some individuals don’t change. And, where I see this lack of change the most is as a generation gap.

So, when the 70-ish woman at the salon refused to cut my hair this past week due to my wheelchair and cerebral palsy, I wasn’t surprised. After all, she was raised in a time when those with disabilities were “cripples,” African-Americans were “negros,” and being openly gay didn’t exist. Yes, we hope that most evolve with the times, but we also know that limited life experiences can keep us from growing, it can keep prejudices ingrained in us. And, for this woman, I understood that disability – not me as an individual – was too much for her to process. In fact, I felt for her because she was beyond flustered while I was fine with the situation. I just wanted a haircut, not to judge her beliefs.

Of course, the salon manager, Andy, jumped in, cutting my hair – because that’s how we accept each other in society today, open, embracing, with grace and dignity, no matter who you are.

I left the salon with a haircut and a reminder that the beauty of practicing acceptance sometimes means likewise embracing those who don’t accept us at all.

elcapitan

By Mark E. Smith

Kevin Jorgeson and Tommy Caldwell recently became the first rock climbers to “free climb” Yosemite’s mammoth 3,000-foot granite face, El Capitan. For the climbing community and public, what made the climb a record was the fact that the duo didn’t use any climbing aids – just bare hands griping crevices and climbing shoes pressed on the rock face.

However, the free climb wasn’t what impressed me. Rather, it was a story within the successful climb.

See, on day 8, on Pitch 15, one of the toughest stages, Caldwell zipped right up it. But, Jorgeson failed. In fact, he failed over a dozen more times, adding 7 days to the climb. Imagine the scene. Caldwell perched slightly above the pitch, watching his partner fail over and over, day after day. And, Jorgeson consistently failing to the point where he should have thrown in the towel. It looked to both men and the world watching that it was an impossible feat for Jorgeson.

Yet, despite exhaustion and escalating self doubt, Jorgeson finally conquered Pitch 15 after 7 days of trying. When asked what pulled him through, he replied, “Resolve. I didn’t see any other outcome but to make it….”

We all encounter Pitch 15s in our own lives, those times when we don’t think we can go on, those times where success seems impossible, adversity too looming. I’ve been there regarding living with disability many times. And, what I’ve learned, much like Jorgeson, is this: we can either concede and quit, or we can muster resolve and determination, where ultimate failure isn’t an option. We know the outcome of conceding and quitting – dreams dashed, an important part of our potential never realized. Yet, when we persevere through the seeming impossible, the results are astounding – we succeed.

Jorgeson’s dilemma on Pitch 15 was a unique one in physicality. After all, he’s among the first to free climb El Capitan. However, emotionally and mentally, his plight was universal – keep trying, against all odds, until you make it. Maybe you’re currently struggling in a college class or with sobriety or in a relationship or in your career. Again, you can always just quit tackling any adversity at any time – and if it’s obviously tough, no one will fault you.

Yet, here’s the universal truth when you have the courage not to quit: if you’re brave enough to tackle adversity, you’re brave enough to overcome it and succeed.

brettwalk

By Mark E. Smith

Endings. Where does one begin? Yes, that’s a haunting double entendre because the question is just that: Where do endings begin and where do we begin with endings?

Over the holidays, I was at my friend, Brett’s, house visiting his parents. I haven’t been there since he passed away last year of multiple sclerosis. I think I assumed Brett’s absence would be clear because, after all, he’s passed on. Yet, as I strolled along the sidewalk leading to his house, I looked up to his bedroom window – the room centered around a hospital bed, computer desk, his artwork and assorted eccentric collectibles – and I felt he was there. I realized in that moment that the end of Brett’s life that I’d assumed at his funeral, wasn’t. What, then, had changed with Brett’s passing?

Upon entering the house, I saw pictures of Brett in his trademark professorial glasses, and his artwork, and his room. We all ordered Chinese food just as before, and Brett constantly came into the conversation. Where was the end, the part where Brett was gone forever?

Brett wasn’t gone. He was there with us in very real ways. No, his mother can never hug him again – and I don’t know how a mother deals with that kind of pain – but I realized that evening that Brett will always be present with all of us who knew and loved him.

When it comes to life and death, where are the endings? Of course, we all know that there are no real endings, not even with one’s passing – it all carries on with us. Life is a journey and although the path may change, the experiences, memories, the impacts made on us never end – they merely evolve as our path continues.