Tag: Living with disability
Cerebral Palsy and Cigarettes
By Mark E. Smith
I don’t believe in self-confidence or ego. Those can waiver, be swayed or mislead us. What I believe in is self-comfort.
See, self-comfort is when we truly accept who we are, as we are, to the core – mind, body and soul. We’re comfortable with ourselves beyond all else. It doesn’t mean we’re full of ourselves or delusional. It simply means we know who we are, from the inside, out – and live as such.
And, it makes life so much easier and successful. Rather than wasting energy on trying to be what we’re not or invest in the opinions of others, we can simply thrive by being who we are. With self-comfort, we know our value, we know our favors and our faults, and we work with it all. Life need not be a struggle; it can be as easy and graceful as a leaf drifting in a breeze.
Being a teenager with cerebral palsy taught me this lesson young. I remember being a freshman starting high school, wanting to squelch every spasm, correct every slur in my speech – an overall fantasy of being someone I could never be. I had unbelievable anxiety on the first morning of school that year. The last person I wanted to be was “the kid with cerebral palsy” at my high school. I did an awesome job at covering up all my insecurities, though, by creating the most ridiculous smoke screen – literally. …I took up smoking.
At my high school, in those days, there was a smoking section, and as long as you could score cigarettes, you could smoke. So, as the initial weeks passed, I slowly merged in with the “tough crowd” in the smoking area After all, when it comes to insecurities, there’s strength in numbers. I bought a black leather jacket and biker boots out of the Sears catalog, stuffed my chest pocket with a Zippo lighter and a Marlboro Hard Pack, and my insecurities flipped into rock-solid confidence. Again, self-confidence and ego can fool even ourselves. In my insecure, skewed mind, however, I was a bad-boy in a power chair – right down to smoking Marlboros, no less.
However, as the school year went on, I realized that I didn’t need to be a so-called tough guy. As my classmates of all sorts embraced me, cerebral palsy and all, I didn’t need to hide behind a smoke screen or facade. I could just be me. I was a teenager with cerebral palsy, and if my peers accepted it, why shouldn’t I?
Ultimately, I gave up cigarettes, and fell in with the general crowd, focusing on my grades, girlfriends, and just being me, spasms, slurred speech and all. And, life was so much easier when I was comfortable truly being me. …But, I wore the leather jacket and motorcycle boots all the way through graduation because …well …they were awesome.
Why I Stopped Jumping Power Chairs
By Mark E. Smith
In my 20s, I achieved notoriety for jumping power wheelchairs off of ramps. To see a guy with cerebral palsy rev up a power wheelchair and jump it off of a ramp, a few feet in the air, was quite the spectacle. For me, it was a mix of misguided bravado, showmanship and stupidity. Unfortunately, though, it worked.
See, although I had overcome and was accomplishing a lot – I was a formal academic and writer at the time – people seemed mildly interested in any of that. But, the power wheelchair jumping, which I cringe to think now as a bit of a freak show, was an attention magnet. Before I knew it, I was featured in big-time magazines, and due to the advent of the Internet, I became widely known as “the guy who jumped power wheelchairs.” Soon, my reputation was bigger than I ever imagined, labeled by one men’s magazine as the “Stunt Cripple” – and my identity fractured.
There was no talent or point in jumping power wheelchairs. It, again, was a shameless spectacle. And, it surely wasn’t who I was. There was so much more to my life and accomplishments. Yet, a single aspect was defining me by reputation. I began to feel boxed in – and I wanted to be who I really was, instead of a one-dimensional caricature.
Many of us have found ourselves in such an identity crisis, haven’t we? We find ourselves in the situation of who others project us as isn’t who we are. In my case, it was admittedly of my own doing, but so often misconceptions, projections or circumstances by others can leave us feeling boxed in. No one should be defined by one dimension; rather, we should be seen in our entirety.
Now, my example of falling into an identity trap is a unique, ridiculous one – stupidity reigned – but it wasn’t the end of the world for my life and career. In far more serious examples, some of us have been boxed in to identities who we’re really not – and it’s been painful and extremely detrimental. How many of us have been in relationships where we felt obligated to act as someone we’re not? How many of us have been stereotyped based on our ethnicity, religion, sexual orientation, disability, and so on? How many of us have been labeled based on where we live, what we do for a living, or even how we dress? Indeed, most of us at some point have felt our entirety stripped down to a single trait that doesn’t just make us seem one-dimensional, but may not reflect us at all. The vital question is, how do we avoid that trap?
In some cases, we can’t. We may inevitably encounter stereotypes and ignorance that we can’t control. However, we can control our own behavior and teach people how to treat us. I recently did a big press conference in the New York City metro area. With a podium full of microphones, a row of TV cameras and a crowd of people, I don’t think a person in the room expected me to take the podium. After all, when’s the last time you saw a guy with severe cerebral palsy and a speech impairment command a press conference? But, I wasn’t going to let others’ perceptions or my disability define me. I made it clear that I’d take the podium – and I ended up on the NYC ABC affiliate’s 6 o’clock news that night holding the press conference.
We don’t have to be boxed in by ourselves or anyone else. With a little courage and a lot of introspection, we can most often avoid one-dimensional identities we misguidedly create or are thrust upon us by others. People call me a lot of titles nowadays – General Manager, writer, advocate, humanitarian, intellectual – but there’s one title that taking control of my own actions and identity buried a long time ago: Stunt Cripple.
Faith, Not Sight
By Mark E. Smith
I don’t know how it will all workout out. But, I know that it will.
See, what I’ve learned from living through adversity is that it shouldn’t be feared, but trusted. We may not see or understand it in the beginning, but there’s purpose and reason to it. Adversity enters our lives not to defeat, but to empower.
Now, adversity doesn’t work on its own. We must contribute perseverance, tenacity, optimism, introspection, and good ol’ sweat to reap its benefits. However, adversity particularly requires one attribute that we must contribute in order to allow it to elevate us: faith.
Adversity demands that in order to rise with it, we must place faith in it. We must know without a doubt that all happens for a reason. We must believe in a larger purpose. We must trust in ultimate outcomes, even when unknown or unseen. We must have faith in the awe-inspiring power of adversity to serve us, to uplift us, to empower us, to take our lives to heights we never dreamed.
I don’t know where you are in your life. But, from my experience in living through adversity, when you face adversity – and you will, as we all do – it has the power to enrich your life beyond your ultimate wishes. You just have to deliver what it requires – perseverance, tenacity, optimism, introspection, and good ol’ sweat – and a healthy dose of faith that ties it all together. To have faith in adversity is the power to not just survive, but to thrive.
To Be Unheard
By Mark E. Smith
It wasn’t her sharing being diagnosed at just 19 with multiple sclerosis that surprised me, nor was I surprised that now 20 years later, she’s effectively paralyzed from the neck, down. After all, I work in the wheelchair industry, and these are the stories I hear every day. No, I never get used to them, but such stories are the reality of those I serve.
However, what she said at the end of our conversation made my world stop: “Thank you for hearing me,” she said. “It’s been so long since I’ve felt heard.”
My heart paused to comprehend the profoundness of her words. With her disease progressed to the point of full body paralysis, having undergone so many life changes along the way, her biggest concern wasn’t any of that – it was simply wanting to be heard.
How many of us have felt that way – unheard? I have, and what I learned is that to be heard is to be acknowledged as a person, and when we’re not, it hurts. To not be heard is to not get our fundamental needs met. To not be heard is to not have our feelings validated. To not be heard is to not be valued. To not be heard is to not be seen. The pain behind being unheard haunts us to our core. When we don’t feel heard by our partners, by our families, by our communities, it’s really easy to feel as if we don’t exist.
Yet, we do exist – fully, completely, rightfully. And, it’s not that we’re unheard; rather it’s that others – wrongfully – aren’t listening. See, no one truly goes unheard. A heart beating makes the ultimate sound. Yet, many of us don’t listen, where insensitivity or ignorance or prejudice can make us deaf to those around us. The hearts of others are beating; we simply don’t listen to their breathtaking cadence.
When that woman expressed to me her gratitude toward my hearing her, it reminded me of an ultimate truth: To know what it’s like to be unheard teaches us what it’s like to truly listen.
An Unlikely Pair
By Mark E. Smith
At a recent dinner celebrating this year’s anniversary of the Americans with Disabilities Act at the DuPont Circle Hotel in Washington D.C., I sat next to an 18-year-old intern for the National Disability Institute. She was amazingly well versed on the issues currently facing our community, not to mention refreshingly mature for her age. She’s what both the disability community and world need from her generation.
However, as we spoke throughout the eve, an aspect intrigued me: not only didn’t she have a disability, but she had no connection to disability. As a freshman political science major from New Hampshire, this internship popped up, she applied, and got the two-month summer gig in D.C. Yet, how does such a happenstance situation as her internship lead to such understanding and passion toward the issues facing those of us with disabilities. I suspected there was more to her story.
As I asked about her family, it all began adding up. Her mother, a successful C.O.O. for a company you’d recognize, died of cancer three years ago. Imagine the adversity of losing your mother to cancer as you’re in high school. It’s well… unimaginable.
And, there within resided the young lady’s understanding of disability experience. No, not literally – we can’t compare dismal employment rates of those with disabilities to dying of cancer. However, what connected her to us, and me to her, was an understanding of what it’s like to live through adversity.
See, there’s a universality to adversity. It’s not person- or situation-specific. No matter the origin or circumstance, when we’ve known adversity, we innately share that empathy with all who’ve experienced it. If we recognize that there’s no form of adversity any more or less significant than another, then we relate with all of adversity. Adversity becomes part of our shared humanity.
And, so as we sat at the event that eve – she an 18-year-old college student, I a 45-year-old with cerebral palsy – of course we clicked: we’ve both been shaped by the universal nature of adversity.
Voice of Courage
By Mark E. Smith
What’s the origin of courage? Is it a conscious decision or an innate response? And, how does it make us rise at just the right moment when needed most?
My soon-to-be 8-year-old daughter has spina bifida and autism. While I didn’t have the privilege of being in her early life – she’s legally my step-daughter – I’ve had the blessing of having her in my life in recent years, where she’s my daughter. And, while our relationship isn’t typical – autism never is – the love and understanding is, just as with my 19-year-old.
My little one has a lot going on medically between her two disabilities, but that all just makes her unique like any child. Due to spina bifida, she’s paralyzed from the tummy, down, and uses a wheelchair. Due to her autism, she has an astonishing vocabulary, but finds it difficult to use it in context and isn’t conversational. In simple terms, she makes us smile nonstop with her constant chatter – Please to meet ya, prairie dogs!, she recently exclaimed in the middle of dinner at a restaurant – but she profoundly struggles expressing what she wants or needs.
She’s also a fearless daredevil, where she doesn’t demonstrate self-protection mechanisms. However, this makes her love motion, including amusement rides. And, so when we recently had the opportunity to take her adaptive horseback riding, we knew she’d love it.
Inexplicably, my wife and I were wrong. As a team surrounded the therapy horse, and my wife tried to place our little one on the saddle, our little one was terrified. In fact, I’d never seen our daughter express fear, but as she clung to my wife, the fear was palpable. Yet, we knew if she could get past that fear, sit in the saddle and ride, she would love it. However, as I watched from the fence feet away, I knew that this had to be our little one’s decision. Yes, she was scared. No, you can’t force courage. But, could our little one find the inner-strength to ride the horse?
After many failed attempts, to the point of all of us adults about to give up, in one last try, our little one saddled up, clutching her mother. As the horse rounded the ring, the unimaginable happened. Our little one exclaimed, I am not afraid!
Was it self-reassurance? Was it a declaration to our group? Was it an affirmation of her life that we never thought she could express?
It was all of those. No, I don’t have the answers for the questions for which I began this story. However, I can tell you most profoundly, though, that all of us there that afternoon heard what few ever hear: the true, literal voice of courage.
Camp Gratitude
By Mark E. Smith
At this writing, I’ve just spent a week at a summer camp full of kids between the ages of eight and seventeen. It had all you’d expect at summer camp – swimming, fishing, boating, arts-and-crafts, horseback riding, and on and on.
However, what was different than any camp I’ve experienced was what occurred at one o’clock every afternoon. The campers – who happen to have a myriad of physical disabilities – gathered in the lodge after lunch for “Pat-on-the-Back Time.” It really should be called “Gratitude Time” because for one-half hour, kids raise their hands and express their gratitude for their peers and counselors at camp, as well as their experiences.
As you might imagine, for us adults, it was a profoundly moving experience each afternoon. To witness children with severe disabilities – many of whom having undergone countless surgeries, many using wheelchairs, all facing exceptional daily adversities – express gratitude from the heart was breathtaking. After all, such children have been through a lot, and face exceptional challenges every day; yet, their expressions of gratitude are unyielding.
Now, you may find those sentiments extraordinary, that children facing such adversities can express such unyielding gratitude toward even the smallest of deed done by another or the most typical of activity – an eight-year-old thanking her counselor for holding her hand in the swimming pool. However, as I sat and listened to their outpouring of gratitude each day, I found the children teaching me more than I ever expected.
See, their gratitude, while clearly an exception in our society, should be the rule. How many times in our careers do we hear colleagues diminishing each other instead of praising? How many times do our children have an accomplishment, and we don’t acknowledge it? How often do we go for days, months, years without complimenting our spouse? How often do we walk away from a cashier or waiter or bus driver without saying thank you? How often do we spend our time wanting instead of appreciating? How often do we dwell on negatives instead of embracing positives? The answer for most is, more often than not. It’s the society we live in – just look around – and it pulls us all down.
The fact is, there’s something really wrong when we, as adults, have to go to summer camp and learn from children how to be more heartfelt individuals of gratitude. And, yet, there’s hope in it all. If children of such adversities can express such appreciation, gratitude and love… we all can.
When Chili and Rice is all You Need
By Mark E. Smith
When I was growing up, we were poor in every way. Yet, no matter my mother’s troubles – from poverty to substance abuse – she always had dinner on the table. No, it was never much. Pancakes or french toast were the norm, with chili-rice a treat, but we never went without. She had no money, but she sure could turn a can of chili and a bag of rice into several nights’ meals. Those dinners may not mean much to most, but till this day I’m grateful for what we had.
What my mother understood – and a life-long value she instilled in me – was the “power of poor.” That single life lesson of making the most out of how little you have has been an invaluable tool toward my successes in life, from addressing challenges of my disability to accomplishments in my career.
During the best of times, life is easy, and struggles are easily overcome. You’ve probably heard the idiom, Just throw money at it! to solve a problem. However, life is rarely that easy. For most of us, we only have what we have – and we either figure out ways to make the most of it.
Yes, there’s enormous power in making the most of it, for that’s all we have. When we live with adversity, it isn’t about what we have, but how creative, innovative and indomitable our spirit is. I may have cerebral palsy, but be darn clear that I’m making the most of it, for that’s all there is. The adversities in my life have inspired me to reach deep and find capacities that I wouldn’t need to strive for if I had limbs that functioned as they should. This reality applies to so many aspects of life. The power of poor brings out our best.
I remember years ago sitting in a product development meeting, and a manager started listing all of the people and money we’d need to put into the project. The colleague next to me whispered in my ear, “No, we need three days and a white board.” …Mr. Money Bags soon left the company. Mr. White Board is on a host of industry leading patents.
In our lives, if we wait for the right amount of money or the right conditions to pursue a goal, it’s likely to never come to fruition, and if it’s all handed to us, it likely won’t bring out the best. Yes, sometimes utilizing the power of poor is a necessity – I suspect that my mother would have relished a ham if she could afford one. However, harnessing the power of poor doesn’t have to stem from literal poverty. Sometimes, with all the resources in the world in front of us, the wise move is to reject the easy route, and simply embrace the creativity, innovation and indomitable spirit within. That’s when we turn a can of chili and a bag of rice into a phenomenal meal.
The Indirect Routes of Growth
By Mark E. Smith
Growth. It’s never linear. I know we want it to be – in our educations, relationships, careers, finances, even in our hearts.
But, it’s not the way personal growth works. More importantly, linear growth isn’t what would best serve us. Therefore, by design, growth isn’t linear.
Many aspects of growth in our lives have an idealized route that we conjure in our wishes, our goals. We want to get from A to Z as easily and quickly as we can.
I want to loose 100 lbs.
I want to settle down with the person of my dreams.
I want to become a vice president in my company.
I want to be financially stable.
I want to graduate from college.
I want to be sober.
The I wants in all of our lives go on and on. However, if they were just achieved, how would we grow, what would we learn? See, the beauty of non-linear growth is that it challenges us to embrace perseverance, to learn creative solutions, to have gratitude, to… well… grow.
Personal growth in our lives can be difficult, if not painful at times. It often doesn’t seem fair or just in the stalls, setbacks or unwanted changes of course. Yet, those, in fact, are purpose-filled times. Those are the times when we actually do grow.
In these ways, let us not look at the non-linear times in our lives as unfair or unjust – the stalls, setbacks or unwanted changes of course. Instead, let us recognize their true purpose: launching pads for growth.
PowerchairDiaries 