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By Mark E. Smith

Facebook and disability – they’re both masters of illusion, where publicly you never see the whole picture of a person, just the best parts possible. But, what happens when you remove that curtain, where life isn’t glamorous postings or a guy in a power wheelchair, wearing a suit and tie, whizzing by you at work?

We really do live in a kaleidoscope culture, where people only want to see and present the pretty parts of life. The real and gritty parts are scary and painful – and yet all so real. None of our lives are pretty and perfect all of the time. In fact, they can often be messy and miserable. And, what I’ve learned is that the pretty and perfect parts don’t unite us; it’s the messy and the miserable that do – because they’re heartwrenchingly real. We can only relate to the pretty and the perfect to a limited degree. However, the messy and the miserable is often where life lands us – and we all can relate to that. In this way, there’s a reason in all of our lives to shatter the illusion and get real, where we have the courage to expose the messy and the miserable, and that’s when we truly connect with others.

My own Facebook and disability form an illusion. No, not intentionally, but by the nature of it all. My colleagues see me poised and polished in my career – perfect hair, whizzing by in a power wheelchair – and my Facebook shows an amazing life. So, if that’s the pretty and the perfect, where’s the messy and the miserable come in?

All over the place! I attended a gala recently and, if I say so myself, I looked GQ-hot rolling in. But, what no one saw was what it took me to get to that point. I’m no GQ model. Rather, I’m a guy with severe cerebral palsy whose life can be messy and miserable. Like many with complex disabilities, I had to build in my “bathroom regimen” in the process of getting ready, which takes time and is physically taxing. Then, the reason why I was polished and on time at the event was because my daughter and fiancee helped me get dressed. I can do it on my own, but it takes hours, so the more practical of the two options was accepting the gracious help of my daughter and fiancee to get me ready.

But, we never have these conversations, right? It’s not like someone says to me at a gala, “Mark, you look so handsome tonight.”

And, I reply, “Thanks. I struggled through a bathroom regimen this afternoon, then my fiancee buttoned my pants, tied my shoes and styled my hair….”

Yet, that’s the reality, and when I think about that gala, I know that many people there had messy, miserable aspects to their lives, too. After all, life isn’t easy for any of us. Maybe there were couples who argued like mad on the way, but walked in with smiles. Maybe they were couples who drove there in a car with the gas light on because they’re broke, but walked in like a million bucks. Maybe someone recently lost a family member and it took all of his or her strength to get dressed up and attend such a chipper gala. And, how many individuals there had disabilities or conditions unseen, from depression to epilepsy? I know that the beautiful lady on my arm – my fiancee, the one who helped me face my challenges to get to the gala – had her own challenges that eve, ones that no one knew, as she continues recovering from a recent cancer-related surgery.

The fact is, everyone’s life can look pretty and perfect on the outside. But, how many of our lives truly are? Life is often messy and miserable – and, as a result, absolutely beautiful. See, when we let down our facades, and with grace and dignity discuss the messy and the miserable in our lives, it makes those around us let down their guards, and that’s when we truly connect with others. And, when we connect, we’re not alone in the messy and miserable, and it makes all in our life – the messy and the miserable – dramatically easier to cope with.

And, so at that gala, I made my own silent toast to the messy and the miserable hidden beneath the facade of the pretty and the perfect – because we’re all in the trials of life together.

past

By Mark E. Smith

Bishop T.D. Jakes says, “When you hold on to your history, you do so at the expense of your destiny.”

Have you ever lived those words or known someone who has? Many of us have seen the impact of such an emotional and mental paralysis that comes from holding on to a painful past – and some of us have lived it.

My history, which I’ve talked and written about extensively with the hopes that sharing my story will help others, is a bleak one. And, I literally had to let go of my history to get to my destiny, which has included sharing my story. However, it wasn’t easy, and when I spend time with those who are struggling to let go of their histories – those with acquired disabilities still longing for the ability to walk, those who were abused as children still harboring shame and self-doubt, those who’ve had their hearts broken, pining for that lost love – I know how hard it is to let go of that history to move on to one’s destiny. To make it even tougher, our histories sometimes have a way of holding on to us, where we continue encountering reminders of that which has caused us so much pain. So, how do we let go of our histories and move on to our destinies?

For me, it was a long process that allowed me to break free. It’s not like I don’t have memories or emotional scars. Those never go away. But, the pain of my past ceased effecting my daily life and allowed me to truly live my destiny when I found myself finally free of my painful history, where I had solitude within and could simply enjoy the life I’d striven to build. I’d liken it to the gravitational pull of the Earth from space – the force will always be there, but the farther we get from it, the less effect it has on us.

I remember being in the throws of my dysfunctional family in high school, knowing that simply graduating would move me a single step forward from my family history of a lack of education. Then, I knew that graduating college would move me a next step, the one from my family history of poverty. Then, I didn’t have a drink of alcohol until I was 33, knowing that I was healthy enough in my behavior to move beyond my family’s history of addiction. Yet, history can sneak up on us, and when I realized I was married to an addict and I didn’t want my daughter to have that history burden her – though it certainly did, has and will – I had the courage to end that marriage to again pull myself and my daughter farther from my history. At one point, I physically moved across the country, both for my career and to get farther away from my history – so I could live my destiny.

See, moving from our histories to our destinies is a lot of work – it’s being entrenched and digging our way out. It takes awareness, desire and patience. It takes knowing that where we were, isn’t where we belong. But, more than any other factor, it takes knowing that we have the power to move our lives wherever we wish, including far, far away from the gravitational pull of painful histories holding us back. We may not have controlled where we were, but we can control where we’re going. No, it’s not an immediate change, but through many individual, conscious decisions day-by-day, over months, years and even decades, we can let go of our painful histories and shift the tide, where our destinies become the gravitational force in our life.

As you read this, I don’t know what you’ve been through. Yet, I know that you are more than your history. We all are. You may long for the ability to walk again, but you have the power to set that pain aside and literally roll a wheelchair toward the life of your dreams. You may have had a horrific childhood, but you have the power to claim a life of solace surrounded by safety and love. You may have had your heart broken, but you have the power to entrust it with that special someone who proves as your true soul mate. You have the power to release your history – step by step, let it go! – and live to your destiny. None of it’s easy. However, destiny calls each of us to let go of our painful pasts and embrace our dreams. Once you allow yourself to be pulled by the gravitational force of your destiny… well… you’ll experience joys in life you never imagined.

empathy

By Mark E. Smith

Much of my life is spent around those like myself who have physical disabilities. And, because I have faced adversity in my life, many have turned to me for understanding, reassurance and comfort. After all, if you look at me – body twisted, spastic in my power wheelchair – I personify adversity.

Yet, while I know of my adversities – and, yes, some components of adversity are universal – I can never fully understand someone else’s adversities. While two individuals may even have the exact same disability, condition or other life circumstance, what I’ve learned over decades of sharing stories of adversity with others is that no two experiences are the same.

This raises several intriguing questions. Firstly, if no two experiences are the same, how do we meet the innate need for connection with others in the face of adversity? And, secondly, how do we support others in their times of adversity when we haven’t had the exact same experience?

The answer to both these questions is a singular one: empathy. Empathy is an amazing human capacity because it allows us to connect with others on the most genuine levels, where it’s not about relating to an exact circumstance, but truly relating to the person who’s experiencing that circumstance in his or her own way. So, you may wonder, how have I done that in my own life? After all, I was born with cerebral palsy, so how can I relate with a mother who was able-bodied till age 36, then paralyzed from the chest, down? Yes, they’re both disability experiences – but vastly different.

The first interpersonal connection I make is to try to best understand the other individual’s perspective. I mean, can you imagine what it emotionally and psychologically feels like to be the nurturer and caregiver to your children and spouse, and now you’re physically unable to fulfill those roles in many ways? I know, we want to swoop in and rescue and say, “As a mother and spouse, you’re more than your body, and everyone views and loves you just the same.” And, it’s true – but that’s not empathizing with the person’s real, valid emotions. I’ve said in this exact situation, “I can imagine how difficult it is to have gone from the caregiver to needing caregivers. That’s a harrowing life transition. How are you dealing with that?” When we approach others’ adversities by letting them know we’re striving to see their situations from their perspectives, it creates true connection and validation – invaluable aspects of empathy.

This leads to the other aspect of empathy: being truly present in the other person’s time of adversity. No, I don’t know what that recently-paralyzed 36-year-old mother is literally going through – I’ve never experienced it and no one has ever been in her exact circumstance, either. However, I’ve made it through harrowing times in my life and there’s common humanity in that. And, so there’s the remarkable ability to quietly relate with someone, not on a circumstance level, but a human level. This is a scary place. I know scary places, so I’m just going to hold your hand as you move through it.

In these ways, through my decades around disability – both in my profession and in my personal life – I’ve learned a lot about being there for others. Empathy isn’t about having gone through an exact experience. Rather, empathy is about striving to understand another’s perspective and embracing him or her as-is, wherever he or she is in the midst of adversity. If we do that, we navigate toward the most uniting experience of them all: shared human experience.

critics

By Mark E. Smith

Someone asked me what the hardest part of my career has been? I didn’t have to think twice: Learning to embrace criticism.

Whenever we put ourselves in the public eye, even on a small scale, criticism flies at us. I once read a scathing criticism about Mother Teresa. Why would anyone ever criticize Mother Teresa?

I would have never imagined 25 years ago when I published my first piece in Sports ‘N’ Spokes magazine about racing wheelchair technology that readers would send letters to the editor criticizing me. But, they did. I remember the next month’s issue where a Canadian racer lunched a personal attack on me in the Letters to the Editor section. It hurt and made me second guess myself, not as a writer, but as a person. Then I wrote a piece in New Mobility about the goal of equal rights for those with disabilities, and I again was shocked by the hate mail. By 1995, when my childhood autobiography was published – as wholesome as writing gets – I wasn’t surprised but disappointed at the strangers who didn’t attack the book, but me personally.

With my work becoming so visible online since the late 1990s, and my career and public persona growing exponentially ever since, public ridicule and criticism is something I’ve faced on a daily basis for two decades now. It’s weird turning on your computer each day, seeing complete strangers hating you. But, it goes with the territory of being in the public light.

What’s intriguing about criticism, however, is that it’s by no means limited to those of us in public roles. In fact, among the most painful forms of criticism can come from those closest to us, those who profess to care about us – spouses, parents, siblings. I know because I’ve been there, too.

I recently received an unsettling phone call from a 22-year-old college student with cerebral palsy. He’s striving to graduate college and build a life for himself, but his dad gives him no support, just criticism. I could relate on an eerie level because I was in almost his exact situation, where my estranged father went out of his way several times to lash out at me, mocking me for pursuing my education, criticizing me for “thinking I was better than everybody else because I was going to college.” Sure, it stung, but by that point I couldn’t put any credence in my father whose track record was a tenth-grade education, a walk-away father and an unemployed, life-long alcoholic.

And, that’s the pattern of critics: typically they’re the last people who should criticize anyone. From my public career to my personal life, I’ve never had anyone doing what I do criticize me. It’s always those not doing who criticize. Among the best quotes on this topic is President Theodore Roosevelt’s excerpt from a 1910 speech:

It is not the critic who counts; not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly; who errs, who comes short again and again, because there is no effort without error and shortcoming; but who does actually strive to do the deeds; who knows great enthusiasms, the great devotions; who spends himself in a worthy cause; who at the best knows in the end the triumph of high achievement, and who at the worst, if he fails, at least fails while daring greatly, so that his place shall never be with those cold and timid souls who neither know victory nor defeat.

Researcher and lecturer, Brene Brown, expands upon this, noting, “If you place yourself in the arena, you’re going to get your ass kicked. But, those not in the arena, who aren’t getting their asses kicked with us, have no right to judge. …Take your seats and be quiet.”

From Roosevelt to Brown, I wholeheartedly agree. We can’t put credence in armchair quarterbacks. If you’re on the field with me, taking blows, marred by dust and sweat and blood, I’ll give you due credibility. However, I can’t take beer-belly, armchair quarterbacks seriously – they invest nothing of themselves. If you criticize me, I will hear you out of decency, but I’ve learned that if I truly believe in what I’m doing – and I do – criticism may still feel lousy, but it doesn’t change my inspired path. Some are satisfied by watching and criticizing, but I’m busy doing.

Let us live boldly in the arena, and as the seated critics shout – too cowardly to be in the arena taking blows with us – use it as validation that we’re doing everything right and getting stronger all the time, thriving on being marred in dust and sweat and blood. It takes nothing to be a critic; it takes everything to strive to make a difference. See, the ultimate strength isn’t in ignoring your critics; rather, the ultimate strength is in having the courage to continue moving your life and career forward regardless of what they say.

thegates

By Mark E. Smith

Every so often, a well-meaning soul of tremendous faith says to me, “You need not worry, there are no wheelchairs in Heaven.”

And, while I appreciate the deep, faith-based perspective of such individuals, I have to bite my tongue to keep from exclaiming, “What do you mean there are no wheelchairs in Heaven! How am I going to get around?”

I’m no theologian, but I understand the Judeo-Christian belief that there is no suffering in Heaven, and this is what individuals are truly getting at when they make such comments. And, I share the belief that there is no suffering in Heaven.

However, their words on this earth imply that I am suffering, that in Heaven, God will make the injustice of my life right. Yet, my faith says that they have it all misunderstood.

See, God made me right. Is my life in living with cerebral palsy a bit physically different than others? Of course. But, no one can justly declare it as suffering or needing to be resolved. Such beliefs are rooted in the unintentional ignorance of individuals, not in the intentionality of God. If we are to believe in an intentional God, then we must likewise believe that each of our lives was blessed with beautiful intention. My faith says that my cerebral palsy is part of exactly who I’m supposed to be, today, tomorrow, eternally – and I’m blessed with that. None of us need miracles, as we are already each a miracle.

In this way, if we are to have true faith, we must believe that each of our lives and circumstances has been created with an intention and purpose that some may not have the earthly insights to recognize. But, that’s OK. As long as we know our own value, intentionality and purpose, we know we’re blessed with being exactly who we are, perfect as-is – on earth as it is in Heaven. Just as houses of worship have accessible parking, wheelchair ramps and elevators, I’m positive that there’s an awesome custom-fit wheelchair awaiting me in Heaven.

emilybarn

(Beyond general admissions, my daughter is applying to an honors college program that includes research within the student’s field. In the applications process, a 750-word essay is required, explaining the desired area of research, why it’s of importance to the student, and its impact on humanity. It’s a lofty task that, ideally, begins students on an extraordinary academic journey, one that ultimately changes the lives of others. My daughter’s essay is in line with the inspired writing you read here week after week, and so it’s my privilege to share her essay with you this week.)

By Emily C. Smith

As I pursue my undergraduate studies in psychology, there is a much larger life mission at work for me. It’s a passion, a field of study, a research quest that ultimately effects each one of our lives: what’s the origin of hope within the human psyche?

It’s a very personal subject to me, and one that effects the life of every person on the planet. We either have hope or others have hope for us, and if hope is removed from our perspectives and lives, virtually all possibilities cease. Yet, with hope, potential dramatically expands our horizons, where a bleak prognosis becomes potential, where vying is a path for victory. However, the questions remain. What are the origins of hope? Why do some people have hope while others do not? And, how does hope, itself, impact the many circumstances throughout our lives?

I’ve learned about hope in my own life, and wish to extend the power of hope to others. I want to empower others with what I refer to as the “science of hope.”

As a very young child, my mother became addicted to prescription medication. I went through grade school, then junior high watching my mother drift away. I struggled with having hope. I remember being 11, and picking my unconscious mother off of the bedroom floor, tucking her in bed, my heading off to school. I remember sitting in class that morning thinking about all of the times I rushed to hospitals with my father because my mother had overdosed. I thought about all of the times I locked myself in my room as my mom crashed about the house. I remember all of the efforts my father made to put my mother through rehab, threatening to sue doctors who prescribed her more pills. Indeed, I remember sitting in class that morning, knowing my mother’s addiction was killing her – and there was no hope.

My father, though, knew something I didn’t. See, he was born with severe cerebral palsy. He wasn’t expected to live more than a few hours, and once he did, he was declared an absolute vegetable. His life ended up a lesson in never believing in a negative prognosis, but using hope as a guiding light, even in the bleakest of times – maintaining a high-profile career and giving me as much of his time as possible as my mother wasted away.

Soon, the inevitable occurred. My mother moved out, removing herself entirely from our lives. With bare walls because my mother took all of the pictures and very little experience running a house, especially at my young age, I wasn’t just void of hope, I was terrified. We were a 12-year-old and a suddenly-single father with severe cerebral palsy who used a power wheelchair in a bare-bones house – alone.

Yet, my father introduced the one component that would rescue me from my stifling fear and pain: the power of hope.

He hugged me and said, “It’s now just you and me. I don’t know how we’re going to do this, but we are. Soon these walls will be filled with pictures of our life, our dreams rebuilt.”

My father’s unshakable hope was my guide post. I held onto his hope as we learned together how to not just live, but to thrive, that guide post slowly becoming less of a need as it was replaced by my own intrinsic sense of hope.

Despite the tragedy of my family, hope has been the ultimate gift. We all face adversity, but when you have hope, you have the ability to not just survive, but excel. From my home life to my academics to my extracurricular activities, hope has led me to empowering heights. Give me a negative circumstance and I will show you the positives; show me limitations and I will show you possibilities; and show me a grim prognosis and I will show you hope.

I know where I got my hope – that is, from my father, from experiencing adversity and having him lead the way with hope. And, I want to further that legacy by not just portraying hope, but by scientifically defining it for humanity. See, I don’t want hope to merely be a mysterious state of mind that some have and some don’t. Rather, I want to research hope to a tangible level, where it’s a definable tool that doesn’t just elevate our individual lives, but all of humanity.

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By Mark E. Smith

As he spun on the salon chair, his joy was contagious. No one else his age, 20s, would dare spin on the chair, hands thrust in the air, yelling, “Woohoo!” but he did. Most of us would be too self conscious, too restricted by social norms. But, his authenticity allowed him to do what we’d all love to do – that is, follow our unbridled enthusiasm. Yes, he was different from the rest of us, and we were all a little jealous.

He stopped spinning for a moment, looked at my 17-year-old daughter and waived, flashing a big grin.

“I’m Kevin,” he said.

“Hi, Kevin,” my daughter replied from her seat along the front window. “I’m Emily.”

“Emily, watch…,” he replied, spinning some more, hands in the air.

He spun, and he spun, and he spun until his mother and father pulled him from the chair.

“Bye, Emily – I’ll call you,” he said, putting his hand to his ear in a telephone gesture, and we all giggled at how adorably unabashed he was, moving toward the door.

As he left, I glanced at my daughter and soon there was a knock on the window behind us. We looked, and Keven blew Emily a big kiss, promptly dragged away, smiling, by his mom.

I was immediately struck with the thought that whoever defines intellectual disabilities has it all wrong. I realized that there were a lot of us with intellectual disabilities in the salon that eve, but Kevin wasn’t one. He followed his enthusiasm, lived with an uninhibited heart and wasn’t afraid to extend love to others. Few of us could say the same.