Posts Tagged ‘disability’

In memory of Dr. Brett Weber, who lived every day like it was Saint Patrick's Day (except for the beer!)

In memory of Dr. Brett Weber, who lived every day like it was Saint Patrick’s Day (except for the beer!)

By Mark E. Smith

Mahatma Gandhi said, “Live as if you were to die tomorrow. Learn as though you will live forever.”

If today were your last day on Earth, what would you do? The more profound question is, are you doing it?

In my forever learning, I’ve taken to heart both the fragility and power of life. In being a member of and serving those with disabilities, I’ve known many passings. I’ve watched friends die of MS after the span of a decade or more. I’ve had friends with ALS who’ve only lived three years from diagnosis. And, I’ve had friends with quadriplegia who simply didn’t wake up one morning. Even when there seems to be a predictability to death – as with a terminal condition – there’s not. Anyone of us can die at any time, disability, illness or otherwise. And, we do.

Having known so many who have passed away, it’s made me oddly at ease with death. It literally has long been part of my life, just as it’s a part of life, itself. This isn’t to say I’m not heartbroken with each passing, but I’ve learned not to struggle with the reality of death. Grief for me has become less about sadness and more about fond remembrance. My life has been changed by knowing all who have passed, and their wonderful impact on me has never stopped at their passings – it’s carried on with me.

And, there within resides among my greatest life lessons: honor the fragility and power of life, as Gandhi put it, as if we may die tomorrow. What does that really mean, though?

Living as if you were to die tomorrow means deeply recognizing the power in life we all have. For each of us, priorities are a little different, but there are universal truths. Deeply value and express gratitude to those around us by constantly reaching out to our loved ones, friends and strangers alike. Live our dreams now, rather than putting them off. Find beauty and meaning in as many moments as we can, even in the difficult or mundane. Accept what we can’t change, and move on. Have fun! And, as my wise wife puts it, “Every day, do important things.” Life is what we make it, so why not live to a degree that doesn’t just bring joy and meaning into our lives, but to everyone around us?

As for me, I’m not worried about living or dying tomorrow – I’m fine with either fate. I’m just relishing every moment of today. No matter if it’s rain or shine, I’m using my power wheelchair to dance in it all!

perseverance

By Mark E. Smith

I had always intuitively known of it and practiced it simply based on having my disability. However, it truly didn’t become part of my consciousness, in defined words, until the lesson in class that day.

I enrolled in an upperclassmen “winter course.” Winter courses at my college were a tremendous advantage because during the first three weeks of January – typically winter break – we could take a four-day-per-week class, for five hours per day, and get credit for a semester course. Most enjoyed winter break; but, for those of us who wanted to knock off classes left and right like bowling pins, the winter semester was a goldmine.

That particular winter semester, I took a literature course titled, “The American Renaissance,” covering 19th-century American literature from 1830 till the Civil War. If you know of the Scarlet Letter, The House of Seven Gables, Walden, or Uncle Tom’s Cabin, you know something of the era. Having a concentration in American lit, I wasn’t concerned at all about blowing through more Emily Dickinson or Fredrick Douglass. Three weeks? Game on!

The first day of class, we began with an enrollment of around 20 students. The same number showed up the next day. It was a sharp group, and at the end of the second day’s class, the professor announced our homework assignment for the night: we were to go home and read in entirety Herman Melville’s Moby-Dick, and be prepared to present scholarly analysis at 9:00 a.m. the next morning. The fact that Google didn’t yet exist didn’t help, either – we had to literally read the book and pull out every nuance, overnight.

Depending on the book form, Moby-Dick ranges from 500 to 700 pages. Additionally, the professor made it clear that we would not be discussing the plot, but true scholarly aspects. As we headed out of class, many of my peers noted the impossibility of the task and how unreasonable the professor was. I, though, was only concerned with reading the book. I rolled straight to the bus stop, and opened the book. “The pale Usher—threadbare in coat, heart, body, and brain; I see him now.” Tonight is going to suck!

I spent the bus ride, train ride, then the entire night reading Moby-Dick, and I used every technique I was schooled in to extract the text, from as mundane as the name, “Ishmael,” and its connection to the book of Genesis to Melville’s assimilation of Shakespeare. By the next morning, I had double vision, but I could tell anyone a lot more about Moby-Dick than the tale of ticked-off Ahab who’s chasing down a whale for biting off his leg.

In class that morning, only six of us showed up. We spent the day dissecting Moby-Dick, and by the end of class, we just wanted to go home and go to bed. But, the professor stopped us.

“I have a confession,” he said. “Today wasn’t a test on Moby-Dick. It was a test on you. Life isn’t about education, intelligence, or skill. It’s about who is willing to persevere. The six of you didn’t do the impossible – Moby-Dick can be read overnight. However, you did what 14 others in this class weren’t willing to do: you persevered. That’s all you need to not only get an ‘A’ in this course, but to be unbelievably successful in life…”

That experience, along with my disability experience, change my life forever. What I realized was that hardship makes us want to give up. Perseverance allows us to rise up. If you want to rise, choose perseverance every time.

Author’s Note

One can’t logically read the entirety of Moby-Dick every night for the rest of one’s life. However, not taking the easiest routes in life is invaluable toward our constant growth. For me, at 46, with cerebral palsy, I put everything I have into working out several times per week. You might say it’s my constant reminder of the perseverance we’re all capable of. No, I don’t have the best coordination, strength or balance. But, none of that matters – because I’ve got perseverance on my side.

Video

waldorf

By Mark E. Smith

When I roll into my suite at the famous Waldorf Astoria Hotel on Park Avenue in Manhattan, around 5:00 pm, nothing seems different from any other hotel – that is, except the suite is a multi-room apartment, with lavish mid-1900s furnishings and a view straight up Park Ave. I picked the room online through my Hilton Honors reward program based on location and accessibility. Frills don’t impress me; practicality does. I need a bed and an accessible bathroom – no more, no less. That’s how I ended up here.

So, late for a dinner engagement, I dump my well-traveled adventure backpack luggage on the rug in the entry and split.

Nice suite. Who cares. I’m out of here, late for dinner.

Around 11:00 pm that night, I return to the suite with my wife and her friends and everyone who’s met up in the city, and we gather in the living room. Good friends, great conversation, New York City on a Saturday night – great times. As the late night gets later, right before crashing into bed, I wind my way to the bathroom. I pass through a huge dressing room, and stop dead in my tracks as I gaze at the truly palatial bathroom. While it’s the biggest, most lavish bathroom I’ve ever seen – gold and marble throughout – that’s not what’s stopped me in my tracks. Rather, what’s stopped me in my tracks is there’s a step up to the bathroom, steps to every feature in the bathroom, and even the commode is recessed in a tiny closet.

It’s some time past midnight, I have to use the bathroom beyond belief, and I have no access whatsoever.

In these situations, I strive to retain the dignity we all deserve. And, I need to clarify what I mean by that. Sure, I could call the hotel staff and have an entourage of them do whatever it takes to get me into that bathroom. But, at what personal price? And, why, in 2016, at arguably the most prestigious hotel in the world, at which I booked an accessible room, should I have to?

I just want to pee like anyone else, and it shouldn’t have to be an all hands-on-deck production with strangers to do so.

I pick my battle, and just want to crash into bed, so we find a water bottle, I pee in it, and go to bed. The next morning, I use the wet bar in the foyer to get cleaned up for the day. Of course, I roll down to the manager’s office, and we have a very candid and poignant talk about my experience, where the error in accommodations occurred, and how they need better protocols.

If a dude books an accessible suite, he should get that.

Disability is a fascinating life experience. It’s not just grounding and humbling, but it demands that we maintain perspective. I suppose the Waldorf Astoria exists because some people see luxury and lavishness as adding some sort of value or meaning to their lives – and that’s fine. However, for me, for better or worse, I’m just genuinely grateful to use a bathroom.

(Click image to enlarge)

(Click image to enlarge)

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.

freehug

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.

growth-net-exit1

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.

lamark

By Mark E. Smith

Among my routine rituals is running my power wheelchair through my company’s test lab “speed trap.” I’ve perfected aspects like tire air pressure, straight-line tracking, and battery type to get my production chair just a scant faster than it’s built to run. In this process over the years, I’ve learned a bit about life, too.

The mathematical equation for speed is [Speed = Distance / Time]. Put simply, how long it takes you to cover an amount of distance is how fast you’re going. As I’ve run my straight-line speed trap hundreds of times – a computer system measuring my distance over time to calculate my speed – I’ve realized it’s a metaphor for life. Our successes and failures are dictated by the same equation, how much or little progress we make over an amount of time impacts our lives.

See, if in our lives, we cover little distance over time, we’re not progressing. Think about our relationships, careers, finances, you name it – if it’s all where it was five years ago, with no progress, our distance over time is dismal. Our lives are stalled or even destructing.

To the contrary, when we make quick, rash, hasty decisions, jumping from one life path to the next, we’re moving so fast that we’re bound to make mistakes. Racing through life impulsively, without considering consequences always results in disasters.

The key, then, is to look at our lives as [Speed = Distance / Time] and find that optimal balance, where we’re making great progress, without making poor decisions or mistakes.

What I’ve learned in the speed trap – and life – is that the right speed is  prudent in practice, but still a little faster than average.