The Power of Voice
By Mark E. Smith
What is the difference between speech and voice? Speech is the articulation of sound, and when those sounds are put together in a normative way, the ability to communicate audibly with others occurs.
However, speech in our lives is very different than voice. Speech is descriptive, whereas voice is emotive. Speech says what’s obvious, voice expresses what’s not. Speech says, My parents passed away when I was in my 30s. Voice says, Although my relationship with both my parents was never healthy, and I long ago came to terms with that, it remains a surreal thought over a decade later that they’re not on this Earth any more – the phone will never ring with a long-overdue call from either of them. Indeed, it’s voice that gives us the ability to express ourselves far beyond the basics of speech.
Interestingly, in knowing peers with progressive conditions – ALS, MS, and such – who “lose their speech,” they’ve often shared after moving to a communication device that it wasn’t the literal loss of speech that was so devastating, but the loss of voice – that is, the loss of communicating emotion to others. It’s one level to lose the ability to ask for a glass of water; however, it’s a profoundly deeper level to lose the ability to spontaneously say I love you to a spouse, or tell a daughter how proud of her you are. That’s voice.
Regardless of our situations, using our voice can likewise be a struggle. The foremost reason we squelch our voice – albeit in the intimacy of a relationship or the public venue of a stage – is out of fear of rejection. Why don’t we tell our partners how we’re really feeling? Why don’t we speak up in that class, meeting or crowd? Why do we prevent ourselves from expressing our voice – what we really want to say – in any circumstance?
The answer is, we fear the rejection that may come with using our voice. However, here’s what’s amazing: we’re never rejected in the end when it comes to using our voice. It may take initial courage to use our voice – sometimes stomach-wrenching courage – but the result is empowerment.
Now, using our voice can seem dangerous. Do I really want to tell my spouse I’m unhappy in our relationship? However, nothing can change unless we change it, and our voice is the ultimate tool for that. Situations may be difficult, but squelching our voice hurts us more. There’s nothing more empowering and liberating in the end than expressing our voice.
The other miraculous effect of voice is that it unites. Shame, guilt, embarrassment, sadness can all squelch our voice. Yet, using our voice to openly share the origins of such emotions can not only, again, liberate us, but can help others. We all have a common humanity, and we’re not alone in our experiences – but we can feel alone. Voice can be the bridge that not only connects us through shared adversity, but leads us through it. Voice allows us to hear someone else’s story and realize that it’s our story, too – we’re not alone.
Voice is among the most powerful tools that we have. Like all powerful tools, voice can seem scary to use. Yet, when we have the courage to use our voice in sincere, constructive ways, it’s life-changing – both for us and others. After all, when we share our voice, we share our common humanity.
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.
The Kind of World we Live In
By Mark E. Smith
Every night at 10:00 pm, I flip through the cable news channels. With redundant sound bites and flashing scenes – not to mention partisan political rhetoric – I’m told what a terrible world I live in. If I am to believe them, my life in every fathomable way is on the brink of disaster – and so is yours. If texting drivers and terrorists don’t kill us, our jobs will be downsized and exported, and our children will end up on heroin. But, then they go on to note that if we make one wrong vote, we will lose civil liberties and nuclear proliferation will usher in World War III. However, none of this matters because whatever the latest virus is, it’s likely to kill us before all else.
This is how the news media portrays our world night after night. Yet, day after day, my life – the world we share – couldn’t be more different. As one with a severe physical disability, the world of intolerance portrayed by the media that we live in should place me drowning in the bottom of a cruel socio-economic barrel. Yet, I’m not – and, in fact, my world, your world, our world couldn’t be more different than the distorted, sensationalism hyperbole spewed by make-up-strewn talking heads on cable news.
What 45 years of disability experience has proved to me is the truth of humanity. People are kind, accepting, embracing and tolerant. We know that we’re all in this together, and while my adversity is an obvious physical one, we all have known adversity, and it’s among the bonds that unites us. We all want to love and be loved, and as my career has taken me to countless cities and towns across this country, every where I’ve been has demonstrated one universal trait: kindness.
As one with a severe disability, who speaks and looks differently than others, who must turn to strangers for assistance in situations, who flies on planes and lands in cities, I see none of the harsh, cruel world portrayed by the media. I see the flight attendant offer to walk with me through the airport to ensure I find my shuttle van. I see the shuttle van driver insist on tying my shoe. I see hotel clerks ensure all I need is taken care of. I see waitresses intuitively move everything where I can reach it. I see individuals homeless say words of blessing to me. I see strangers in stores, restaurants, everywhere, share the kindest words and hug me.
I don’t know where the media gets its soundbites and images of the bleak world it portrays. But, if they followed me for an hour, in any city in this great country, they’d see the truth: the kindness of the world around us is awe-inspiring. Turn off the TV and get out into it.
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.
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