Posts Tagged ‘nature of disability’

By Mark E. Smith

I recently spoke on a senate panel on aging. The panelists were heavy-hitters, including a U.S. senator and heads of government agencies. As speakers go, they were the best-of-the-best, both in presentation and knowledge. Then, there was me.

As a speaker, I prefer keynotes, not because I wish to be the star attraction, but because there’s a different dynamic on panels, especially when the other panelists are beyond great. It’s like sitting back stage as a musician and the band before you is phenomenal, and you’re thinking, Man, I can’t live up to what Iggy Pop just did!

What made the recent panel even more challenging was that I went last, so there I sat trembling in my boots – not emotionally, but literally, as I have uncontrollable body movements due to cerebral palsy – as I watched eloquent, brilliant speakers along our table command the room. So, how’d I move through it?

The same way that I always do. Public speaking can be tricky. Yet, if you know your subject, know your audience, and you’re skilled with rhetorical devices, public speaking is a bit of an illusion – it looks tougher than it is. For me, however, there’s a wild card added to the mix: cerebral palsy. My brain sends involuntary signals to my muscles and they do whatever they want, whenever they want. My central nervous system doesn’t care if I’m in bed watching TV or speaking in front of 250 statesmen. If it tells my legs to kick, they simply kick – formally known as a “spasm.” Speaking as a craft is easy for me; doing it with the physical unpredictability of cerebral palsy can be the harrowing part.

Given my situation, I view speaking in front of audiences like driving a race car. Driving a car at 150 mph around a race track takes skill, but even more so when the unexpected occurs. Race car drivers win races not based on simply going around a track, but in addressing peril when encountered. Did you see him keep his car from spinning off of the track!

When I’m publicly speaking, it’s the same phenomenon. I have my emotional and mental composure, but I never know what my body will throw my way. The ability to address spasms and uncontrolled body movements without missing a beat while speaking is my real craft. The way I do it is I let go of the mental and emotional constraints others often feel in such situations. When I sat on the senate panel, there was no way I could be as physically composed as the other speakers, so I threw that standard out the window and focused on being the only person I could be: me. I have cerebral palsy and a microphone – hold on to your seats, folks! In these ways, cerebral palsy becomes an asset of originality.

It doesn’t matter if we’re public speaking or living our everyday lives, the minute we let go of social pressures or preconceived notions of who we should be and just be ourselves, as-is, there’s no freer realm to be in. I understand that this is difficult for many. We live in a culture that presents ideals on how we should be. Yet, for many of us, it’s impossible for us to meet those ideals – there’s no product to resolve cerebral palsy – and in the larger scope, nor should anyone feel he or she has to live to such scripted ideals.

See, I view the world as the most spectacular art gallery. Each of our beauty isn’t blended on a single cultural canvas, in a single form, but seen within the borders of our unique frames. Photoshopped images are great; an original Picasso is amazing.

CHILI

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.

tunnel

By Mark E. Smith

Alone. We’ve all felt it. And that, in itself, is why we’re truly not.

Based on my career in working among a population where trauma is common, I often hear how alone others feel in their challenges and struggles. However, as an ordinary person, I also hear how alone many feel in challenges of all types in everyday life. Yet, I’ve never encountered a situation where someone’s struggles transcended common humanity, where others hadn’t experienced a similar situation, of similar emotions.

In this way, the uniqueness of feeling alone in our struggles isn’t unique at all. In fact, it’s among the most common emotions we all share. It is intriguing, though, that such a commonly shared emotion can be… well… generally unshared.

See, unlike other cultures in the world, we in North America are prone to keeping our struggles to ourselves. The result is, we feel alone. And, so we live in a culture that exacerbates feeling alone in times of struggle, when we’re actually not alone at all in our experiences.

If you’re like most of us, you’ve unquestionably known unfortunate experiences like relationship issues, career issues, financial issues, health issues, and on and on. And, if you’re like most of us, you’ve felt alone during these struggles, as if you’re the only one who’s ever experienced them – especially in the moment. However, most of us have experienced them, too, so why are we all feeling so alone in the process?

The answer is simple: we don’t reach out when we should. As those struggling, we don’t reach out, and when we have a hint that someone else is struggling, we don’t reach out. Why do we behave this way? Well, self-doubt and fear on both sides, that’s why.

When we’re feeling alone in our struggles, we default to these internal scripts, don’t we?

No one understands what I’m going through.

They’ll judge or ridicule me.

I don’t want to be seen as weak.

I’m just ashamed of this mess I’m in.

I don’t want to rock the boat.

Or, for that which prevents us from reaching out to those we see struggling:

It’s none of my business.

I don’t want to embarrass them.

I won’t know what to say.

Based on our culture, these are totally valid feelings. But, there’s one problem with following them – they leave us feeling alone in our struggles, isolated. And, it simply makes any struggle worse and last longer. The antidote, however, is brilliantly simple: share.

Now, sharing can be scary and tough, requiring a lot of courage and vulnerability. But, the rewards of not being alone in our struggles outweigh all of those seeming risks. If you’re struggling alone – and we all do at times in our lives – share it with someone you trust. Interestingly, trust, in itself, can be a far more liberal definition than most might think in times of struggle. Some of the most healing, profound conversations I’ve ever had have been with virtual strangers, those recently met. What’s important is that we reach out, and it’s astounding how the sharing or inquiring of just a hint of ourselves exposes the common humanity of us all, realizing we’re not alone.

I don’t know what you’re struggling with our will be struggling with. But, I know that none of us are exempt from struggles, and none of us need to be alone in our struggles. In your tough times, I encourage you to reach out, where the hand that you grasp will feel comfortingly a lot like your own.

thelonious-monk

By Mark E. Smith

I’m sure as a younger child I questioned it all. But, by adolescence, I was just me, and there was no room for me or anyone to question it. I mean, it was questioned – who I was because I was different, my disability seemingly made me different – and it would occasionally sting in the moment. However, I ultimately understood I was who I was, I am who I am, let’s get on with this.

The jazz great, Thelonious Monk, was of that spirit, too, long before I was born. During the 1940s through the 1960s, when you had the greats like Duke Ellington, Miles Davis, John Coltrane, Dizzy Gillespie, Charlie Parker and Billie Holiday evolving Jazz in a linear form, Monk was innovating on the piano in ways no one had ever seen.

Monk was first and foremost a composer, with musical eccentricities that few could follow. Improvising was a staple of jazz in that era, but his obsession with improvised composition on stage made him a lone wolf, where he didn’t care what the band played or what the audience wished. Monk simply followed his passion key by key, note by note, reveling in what he discovered in the moment, oblivious to all around him. Often, the only queue to what he was playing was his right foot keeping time. He just played as him, and whether the world followed didn’t matter. John Coltrane said, “Working with Monk is like falling down a dark elevator shaft,” and Miles Davis for a time refused to play with Monk due to Monk’s defiance toward staying in line with the rest of the band. In the refined world of jazz performance, Monk was also known for stopping playing mid song, getting up to dance alone as the rest of the band played on. Indeed, Monk was Monk, and he wouldn’t meet arbitrary norms.

In the process of being him, Monk ultimately lived an obscure but free life, where beyond his immediate circle, he was generally unknown during his career, never getting the fame of his contemporaries. Yet, in the process, he composed an astounding body of recorded work, only second to Duke Ellington. Monk largely disappeared from 1971 till his death in 1982, struggling with mental health issues along the way. Posthumously, he was granted a Pulitzer Prize for his body of work, and is subsequently now known as among the greatest jazz composers and musicians of all time.

How many among us just want to be themselves, follow their hearts and passions regardless of what anyone else thinks? Yet, many don’t out of fear of rejection or not fitting in. For all of us, Thelonious Monk left us with striking words of wisdom: “I say, play your own way. Don’t play what the public wants. You play what you want and let the public pick up on what you’re doing – even if it does take them fifteen, twenty years.”

adversity

By Mark E. Smith

Some had a limited life expectancy. Others had experienced life-changing injuries. While still others we’re born into it. All faced exceptional adversity, which made sense, as it was an expo for those with disability.

However, as I was surrounded by over 5,000 individuals that weekend facing adversity, I realized that the confidence, comfort and joy that many – not all, but many – exuded aligned with what I learned long ago: adversity dramatically improves our lives when we embrace it.

For those who haven’t experienced adversity or embraced it, they find fear in it and have sympathy toward those who live with it. For those of us who have experienced and embrace adversity know the remarkable role it serves in our lives. Our experiences have taught us that adversity shouldn’t be avoided, but actually welcomed.

See, adversity forces us to face problems and situations that are too big to resolve. In my situation, no one can change, fix or cure my cerebral palsy. And, because of that, it’s forced me to learn and grow in order to succeed in living with it. Think about what an extraordinarily fortunate situation that is to be in. Yes, we can grow without adversity, but like adding weights to a workout, adversity is a rare force that can fuel wisdom, inner-strength, understanding and perseverance, to name a few life-enhancing traits. Adversity, then, isn’t meant to restrict, but empower.

I realize that for some, adversity as empowerment is a ludicrous thought. After all, how is being seemingly down on one’s luck a positive in any way? Worse yet, when you’re down and you see someone in your situation who’s happy, that can be the perfect recipe for bitterness. But, again, if we view adversity with acceptance, we will intrinsically grow. If we embrace adversity, the challenges within will cause us to rise.

As the late singer, Prince, prepared to perform the Super Bowl half-time show, the producer called to tell him it was raining, convinced that Prince couldn’t or wouldn’t perform. Prince replied, “Can you make it rain harder?”

Prince ultimately performed among the most iconic concerts of all time, later noting that that caliber of performance could only be achieved when facing such adversity. That which he couldn’t resolve – the weather – elevated his performance.

There’s the notion in our culture that adversity is to be avoided, feared, that it’s tragic, life-detracting, that it’s asinine to even suggest welcoming it into our lives. However, that’s all gross misconception. The fact is, adversity allows us the remarkable opportunity to extract dignity from difficulty, strength from struggle, power from pain. That is, adversity allows us to not just rise in the rain, but it empowers us with the understanding that the harder it rains, the more we can rise.

ginger ale

By Mark E. Smith

By the time I was vomiting uncontrollably in the shower that eve, I felt it a mixed blessing. On the one hand, I made it through a day that encompassed a media feature of my company, and I suspect vomiting in front of the press and my CEO may have influenced the story a bit. The press is fickle that way.

On the other hand, I was perplexed how I became so sick, so fast? And, so, as my wife brought me a baker’s bowl, so I could make it from the shower to the bed, vomiting on the move, I sought her expertise. After all, she’s a skilled medical professional – or, at least a high-end optician. If you can’t trust an optician to advise you on stomach viruses, who can you trust? OK, you can’t trust an optician at all for medical advice. While my wife could fit me for awesome eye wear, she was likewise clueless as as to why I was suddenly so sick?

Once in bed, things got worse. In my 45 years of having cerebral palsy, I’ve learned an invaluable lesson: the one downside to not being able to walk is not being able to walk. And, so as I felt my condition worsening, unable to sprint to the bathroom, I broke out my secret weapon: Depends. But, here’s the thing – as much as Depends are marketed as “underwear,” they’re diapers, poofy, odd diapers, sans the tape closure tabs. So, there I sat in bed – 1 am, 2 am, 3 am, 4 am – wearing a diaper while vomiting uncontrollably all night into a baker’s bowl. Some might find that embarrassing, but I found it an ingenious evolutionary system of survival. Prehistoric man and his tools had nothing on me – I had Depends and a baker’s bowl.

By the next day, I was gut-wrenching sick, vomiting ad nauseam, to painful dry heaves beyond anything I’d ever experienced. On the upside, it gives you one heck of an ab workout. I see dry-heave gyms catching on. But, I was getting sicker and sicker.

Now, here’s the brilliance of medical science: when you’re vomiting uncontrollably, they tell you to drink lots of clear fluids – all so that you can promptly vomit them back up. Gatorade in, Gatorade out. Water in, water out. It’s like I was the opposite of a waste water treatment plant, putting perfectly good fluids in me only to vomit them back up as bio hazard.

Finally, I settled on ginger ale. No, it wasn’t anymore effective than the other liquids. However, there was an elegance to it. Darling, won’t you please bring me a glass of ginger ale, with ice, in our finest crystal? And, that my beautiful wife did. Was I a sick, pathetic mess? Absolutely. I was in bed, wearing a diaper, vomiting into a baker’s bowl! But, the crystal glasses of ginger ale added a certain class to it all – even as I vomited every last drop. I was a hint of a British gentleman – vomiting, wearing a diaper.

After a few days, my wife wisely wanted to call an ambulance. I was only getting worse, unable to eat in days, and arguably pushing the line toward dangerous dehydration. My wife knew best. However, I’ve long trusted a slightly off-kilter Italian – my doctor. He’s long lectured me on trying to stay out of the hospital. English is his second language, so I don’t always know what he’s saying, but his theory is something to the effect of: Hospitals are full of viruses. You eat bad fruit, go to the E.R., touch something, get a flesh-eating bacteria, and, boom, you die! Yes, he’s prone to slippery-slope exaggeration, but has his points.

Still I followed my doctor’s advice and opted to stay in bed, wearing diapers, and vomiting the finest ginger ale from crystal glasses that money can buy – $1.79 per 2-liter bottle, imported from Canada.

Out of boredom one eve, I lay watching CNN political coverage. I was already sick, so the dynamics of the 2016 political race technically couldn’t make me any sicker. Governor John Kasich told the story of confiding in former governor Arnold Schwarzenegger that he didn’t know how to handle personal attacks? Schwarzenegger replied with classic Arnold advice, “Enjoy the punishment.”

Schwarzenegger is no philosopher, but he was on to something. We have choices in our lives. We can be bitter and resentful, or find some sense of gratitude, no matter how bleak the circumstance. Yes, I was sick to a troubling level, but at least I was sipping – and vomiting – ginger ale from a fine crystal glass.

foul

By Mark E. Smith

In my neighborhood, none of us kids took anything from anyone. It was where the two sides of the tracks intersected – upper- and lower-class kids intertwined. Neither had much parental guidance. You just never knew where anyone’s parents were. Some were drinking in dark bars in the afternoon, others working in the city in high-rises till all hours, and some straddling both lives. Because of this, in my neighborhood, most kids had free reign from parents, and when out wondering our suburban streets, you didn’t take gruff from anyone.

Being the kid who used a wheelchair didn’t make me exempt from any of it – the dysfunctional home, taking jabs from the other kids or dishing it back. Mostly, though, I kept to myself after school. At 14, I had a lot going on teaching myself to be independent with cerebral palsy. I was three or four years into my mission of being as independent as possible and I saw a lot of progress. My main self-therapy was pushing my manual wheelchair for two hours or so after school every day. The repetitive motion of pushing my manual wheelchair was a sound exercise in strength and coordination. But, I was dismal at it. I’d started a few years earlier barely able to propel across our living room, and by this point, I could make it around our neighborhood. Yet, there was no grace in it.

I pushed painfully slowly. Really, it wasn’t even pushing – pushing implies consistent movement. For me, it was push, roll feet or inches, regather my flailing, spastic limbs and then push again. All that mattered, though, was that I was seeing progress.

As I went out each day, I purposely stayed on quiet streets. I needed to do what I had to do and didn’t want to be bothered. Besides, I never knew if anyone would understand why I was doing what I was doing, and I didn’t want to have to answer any questions. When I was eight, I was in a grocery store trying to buy a pack of gum and an elderly woman made a huge scene that crippled people like me shouldn’t be out alone in public. That experience shook me a bit, and I suppose it made me want to avoid such a scene while out pushing my manual wheelchair, self-aware of how awkward I looked. So, the side streets were my sanctuary, where I could push and progress at my own pace, in solitude.

There was a hill leading to our driveway. It wasn’t the steepest of hill, but long – maybe two blocks – lined by vacant land on each side. It took me a good year to get to where I could push up that hill myself, but I got to where I could do it, although it was forever a challenge, inch by inch.

One afternoon while halfway up the hill, a group of neighborhood kids came up from behind me.

“Need help?” one of them asked as they all surrounded me.

“Do I look like it?” I asked with an attitude, pushing toward a boy standing in my path.

“Yeah,” they all replied at once, laughing.

“Screw you!” I shouted, giving my chair another push, wanting to be left alone.

“Screw you!” they shouted back as they walked in front of me.

“You’ll never make it up the hill, retard,” one kid yelled.

I pushed even harder.

“And I’m going to kick your ass in school tomorrow!” I yelled.

Of course I made it up the hill, and I didn’t kick the kid’s ass in school the next day. I guess achieving one of my two goals wasn’t bad considering the circumstances.