Disability Deliberations – PowerchairDiaries

The Seasons of Life

By Mark E. Smith

Wouldn’t it be nice if our life paths were linear, evolving via steady forms of growth? Just imagine how easy life would be if, from health to relationships to finances and on and on, our lives simply got better and better, with no adversity or rough times in-between.

Now, we all know that life doesn’t work that way – life isn’t linear for anyone. However, what happens if we accept the way life really works? What happens then?

I’ve watched the trees, shrubs, and flowers on my property this past fall, winter, and now spring. And, nature’s reminded me of the course of our lives: often growth occurs from loss and regrowth – phases I’ve experienced in my own lifetime, where I’ve always come back stronger, with a more vibrant perspective.

When we experience disheartening change or loss, it’s understandable to feel like all good things have come to an end. It’s like watching my flowers die in the fall. Then, all often seems hopeless for a bit – I’m never getting that part of my life back. It’s like looking at a mountain of trees without leaves in winter, where all looks eternally bleak. However, soon spring arrives and growth returns, where the trees, shrubs, and flowers have a tremendous growth spurt and colors abound. Nature is magical in its seasons – and so are our lives.

Not unlike nature, our growth isn’t linear. Rather, there are pauses and breaks to it. Our health fluctuates, relationships ebb, and we have financial down times. Yet, if we have faith, knowing that life isn’t linear, but that change and loss soon enough welcome new growth, we can have a life that’s one of anew and success, where the past is stepping stones to an ever brighter future. Indeed, these are the seasons of life.

It must be noted that nature has one up on us in that once the right weather hits, spring comes on strong and growth abounds. The springs in our lives can be a little more tricky in that we must invite them with positive actions and thoughts. If we’re in the dumps emotionally – without hope – winter can last a long time. Therefore, it’s often up to us to be the weather changer – again, a little faith and optimism that spring is possible goes a long way.

Life isn’t linear, and we do find ourselves in dormant seasons. However, when we do, let us know that all seasons are temporary, so thrive in the sun and have faith that in even the most wintry of times, spring will return.

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.

Let it Rain

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.

Gravitational Pulls of the Soul

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.

Fool’s Gold

By Mark E. Smith

I saw an on-line correspondence by someone I’ve met in-person, and the individual was describing “their” own disability. What caught my attention was that the individual’s description of their disability seemed exaggerated beyond belief. I was so struck by the individual’s seemingly exaggeration of their disability that I called a mutual acquaintance who confirmed that, indeed, the description was dramatically exaggerated – leaving us both wondering why the individual would make their disability out to be far more physically severe than it actually was? I mean, if one were a paraplegic with full use of one’s arms, why would one clearly lead others to believe that one was a quadriplegic with virtually no use of one’s arms?

Of course, in the spectrum of disability, this wasn’t the first time that I’ve witnessed someone exaggerate the physical facts of one’s disability, describing one’s disability as medically far more severe than it truly is. And, I’m always left with the question, Why do some wish to make themselves out to seem more physically disabled than they are? To be really blunt, How dysfunctional do you have to be to seemingly wish to be more disabled among your peers than you really are?

When I was working at a college years ago, a colleague of mine and I were sitting in my office one evening talking about minority-based literature. And, specifically, we discussed how there is a “hierarchy of hardship” in western culture, where the tougher one’s plight in life, the more respect one earns from others. In today’s world, we see this in the rap music industry, where street thugs like 50 Cent, who began dealing drugs at age 12, are idolized with “street cred” in their music careers, whereas rapper, Rick Ross, lost much of his following when it came out that contrary to his “thug-filled” lyrics, he’d actually worked as a prison corrections officer. Likewise, as my colleague and I discussed, there is a certain “street cred” to disability, where the bigger your physical challenges, the higher up in the disability hierarchy you may be seen.

In this way, there is some merit to the thought that those who exaggerate their disabilities are looking to up their street cred within the disability community, so to speak. However, there’s also a much deeper, self-defeating aspect to those who exaggerate the extent of their physical disabilities: They’re trying to convince themselves of reasons why they’re struggling with self-acceptance and a lack of success in life.

Unfortunately, due to remaining stereotypes, severity of disability still gets us off of the hook in many parts of life. The reason why the media still makes a big deal about a student with a severe disability graduating college, for example, is because our culture places lower expectations on those with disabilities – and, as it works, the more severe the disability, the lower the expectations. If you have a severe disability and you succeed, you’re heroic; but, if you have a sever disability and do nothing, that’s fine, as well – after all, those with disabilities can’t be expected to live up to mainstream standards, as their plights are already harrowing enough, or so implies mainstream stereotypes.

Now, with that principle in mind, if you’re one with a disability who’s struggling with self-acceptance and not willing to put forth extreme efforts to succeed, what’s the easiest way to justify your complacent path in life?

By convincing yourself that you’re far more disabled than you really are, of course! Really, it’s a brilliant – albeit, self-defeating – strategy that actually works. If you can convince yourself – and, ideally, those close to you who don’t know any better, as with family members – that you’re too disabled to have a healthy emotional life, attend college, work, or care for yourself, then you’re off of the hook. All shame is removed from the equation because, as you’ve convinced yourself, you’re a victim in all this – that is, the severity of your disability.

However, here are the two fatal flaws when you invest in such a dysfunctional coping mechanism: Firstly, your peers with disabilities label you as a fool who no one takes seriously, and, secondly, convincing yourself that you’re more severely disabled than you are ruins your life!

You might get by convincing family, friends, and the mainstream that your disability is the worst fate on Earth (because they can still be manipulated). But, it never flies within the disability community, where those with truly the most severe disabilities will look at you and laugh, rolling away, writing you off as a “tool.” I’ve seen it countless times, where there are, say, a table full of successful individuals with medically-defined severe disabilities, and someone of notably less physical severity will join the party, and start going on and on about how disabled he or she is, only to have all others label it as a pathetic attempt for attention or as a scapegoat for shortcomings in life compared to others.

I was sitting in a hotel lounge after working an Abilities Expo once, and a paraplegic was at our table going on and on about how disabled he was, how the world was doing him wrong. With us was a young lady with muscular dystrophy, on a ventilator, with no use of her arms, and she had a career as a social worker. As the gentleman went on and on about how terrible his life was with a disability, the young lady suddenly said, “I’ll bet you $5 that you can’t pick up that glass that’s in front of you.”

The gentleman didn’t think twice, simply picking up the glass. The young lady smiled, and said, “Man, when you can pick up a glass, you’re right, you must have it tougher than many of us in life. Reach in my backpack, and grab $5 out of my wallet – you clearly need it more than the rest of us.”

Again, you can exaggerate your disability in culture at large, but it will make you a fool among your peers with disabilities.

Nevertheless, in the grand scheme of life, looking foolish among peers isn’t nearly as consequential as convincing yourself that disability effects your life more than it should. The minute that you create any false limitations in your life, the only one that’s ultimately harmed is you. Make every excuse in the world why your life is a horrible plight – including exaggerating disability – but it doesn’t change the fact that you’re the one removing yourself from the game, you’re dictating your own limitations toward success.

So, if you find yourself feeling like your disability is the worst plight ever, making it more severe than it is, how do you change that self-destructive mindset?

The answer is strikingly simple: Stop dwelling on your disability, and start focusing on your abilities. Sure, it takes accountability, where you say, I’m responsible for the outcomes in my life, and my disability doesn’t void my remaining abilities, whatever they may be. Value your abilities, and use them to their fullest – never complaining, but always thankful – and your life will go in directions that you never dreamed.

Of course, there’s never any thought among my successful friends as to who has the severest physical disability. Sure, we all have varying degrees of physical disabilities, where a clinical observation might deem quadriplegia more severe than a below-the-knee amputation. However, when we’re each focused on living life to our fullest potentials, no one is more or less disabled than the next person – we’re all simply on a level playing field, living our best.

Sorry, Disability Ain’t the Issue

By Mark E. Smith

I was listening to the BBC disability-related talk show, OUCH!, a while back and they raised an interesting question: How often do you automatically attribute poor outcomes in your life to disability? For example, if you’ve ever been turned down for a date, did you automatically blame it on your disability?

Now, the OUCH! hosts, Liz and Matt, didn’t really explore the subject, but raised the question and moved on, per their fast-paced show. However, the subject remained with me because such thinking – …it was because of my disability – has been expressed to me by so many of my peers with disabilities when something doesn’t turn out the way they wish, and it’s always seemed like such an easy cop-out, hinged upon self-pity and shunning accountability.

An acquaintance with a disability recently requested my advice toward her job search. She was applying for jobs in a field requiring a minimum of a bachelor’s degree, with additional career certifications. She came to me frustrated that time after time, able-bodied individuals got the job, or she wasn’t called in for an interview at all – and she was convinced that it was all based on her having a disability, that she was being discriminated against by all. So, I asked to see her resume, as her story was quite compelling. To my surprise – based on how valid she expressed her concerns of discrimination – her resume told a totally different tale: She had an absolute lack of qualifications. She had no college education or certifications for the jobs she applied for, where if her resume came from anyone else, the human resources manager would just as quickly dismiss it. She blamed her inability to get a job on her disability, but the real problem was her resume – she was simply unqualified.

While injustice can occur based on disability, too often we use disability as a scapegoat in our lives, an easy pawn to shun accountability. Many of us know more than one guy who will swear that his wife or girlfriend left him because of his disability. In fact, if you ever run into a guy who uses a wheelchair who’s drinking alone in a bar, you’re almost guaranteed to hear such a sob story. And, in knowing couples who’ve gone through the process of disability, then divorce, such tales are true – the wife walked out on her husband with a disability (and, yes, men likewise leave women who become disabled). Yet, when you, as a third person, get a true glimpse into such failed relationships, virtually none failed directly due to disability, but due to extreme dysfunctions like addiction, emotional abuse, and a generally self-defeating attitude on the part of the person with a disability. In fact, a lot of times the disability factor causes the departing spouse to stick it out longer than she or he should have, not wanting to seemingly abandon the spouse “in a time of need,” whereas he or she would have left sooner if it was a non-disabled spouse who was such a mess. Yet, the person with the disability virtually never takes accountability, blaming it all on the disability, practically saying, Sure, I’m a pill-popping alcoholic, with no motivation, who hates the world, but she had no right to leave me just because I became paralyzed! Again, just asked the guy at the bar, he’ll tell you.

Of course, those who are single with disabilities can prove masters at blaming their disabilities for not finding love, conveniently overlooking every dysfunction in their lives. I have a buddy who I’ve known for ten years, and he calls me every few months with the same question: Why can’t women overlook my disability and love me for me?

And, on the surface it’s such a poignant, heartfelt question – but, my answer, not so much: You’re a 42-year-old, who’s never had a job, lives with your mom, plays video games all night, are 100 lbs. overweight, and your wardrobe consists of Twilight T-shirts and sweatpants. Disability maybe an issue for some women, but your overall lack of ambition is a problem for all women. If you have ten issues in your life and disability is one of them, address the other nine, and you’ll be 90% ahead of the game!

We know that discrimination occurs toward those with disabilities, and we likewise know that some are so uncomfortable around those with disabilities that they won’t accept us. However, those instances are few and far in-between. When we run into situations that don’t go the way we wish, we mustn’t blame disability by default, but analyze other areas of our lives with a possibly painful reality check. If I’m not getting jobs, is it because I’m not qualified? Did my spouse leave me because of my terrible behavior? Am I striking out in love because I have virtually nothing to offer someone? Then, when we answer such questions honestly, we know exactly what to work on to improve our lives and become better individuals. In many ways, taking disability out of the equation forces us to take responsibility – and that’s a life-bettering tool.

As for me, a harmless flirt, I get seemingly ignored by women all of the time. I suppose some could blame such rejection on my having cerebral palsy. However, in full accountability, I know the real answer: I’m just a creep. I need not worry about having cerebral palsy, but the creep in me certainly needs addressing. I really should work on that.

It’s A People Thing

By Mark E. Smith

Isn’t it pecular how people – including those of us with disabilities, ourselves – take specific character traits and somehow universally attribute them to those with disabilities? I read someone note that those with disabilities are too introverted in public. It struck me as an interesting observation directed specifically at those with disabilities – namely because many people without disabilities are likewise introverted in public. If you people-watch at Wal-Mart, or an airport, or a college class, or any public place, almost everyone in public is introverted – it’s a cultural norm in many regions. It’s not a disability thing; it’s merely a people thing.

Along these lines of conjuring that there are specific traits to most with disabilities, a friend confided in me that one of her employees with a disability wasn’t coming to work on time, and repeatedly called off work during bad weather and beyond – liberties that no other employees had. Knowing that I never miss work and don’t make an issue of my disability, she came to me for advice, wondering how she should handle the situation, finally confiding in me that what she really wondered was if this behavior was common to those with disabilities?

I explained to her that, as a manager, she had an obligation to take disability out of the equation, and see the employee based on the real issue: The person was just a bad employee, and disability had nothing to do with it. I said, “Look, this isn’t a disability thing, it’s a people thing. Some employees with disabilities are terrific, while others are terrible – but disability, in itself, has nothing to do with one’s work ethic. A bad employee is a bad employee, and disability isn’t part of the equation.”

To yet another extreme, I had a college professor once tell me how impressed she was with every student with a disability, that they were all brilliant, that she wished all of her students were like those with disabilities. I candidly noted, “You’ve just managed to miss out on the dumb ones with disabilities – there are lots of us, and I may be the first to prove that, ruining your track record.”

These three anecdotes point to an important truth: Character traits are about individual people, not disability. It’s strikingly obvious that those with disabilities are as diverse as everyone else – because those with disabilities are everyone else. Yet, some people don’t seem to catch on so quickly that people with disabilities are just people, after all.

See, what some miss – including some with disabilities, themselves – is the fact that there’s nothing inherent to the physicality of disability that standardizes one’s humanity. Everyone on this planet – and certainly within a cultural melting pot like the United States – is diverse, with individual traits – and disability doesn’t change that. Geniuses are geniuses, shy people are shy people, hard workers are hard workers, jerks are jerks, and it’s all totally regardless of disability. Nevertheless, where some get hung up is in presuming that disability effects all with disabilities in the same ways – it’s called stereotyping.

Interestingly, the stereotyping of those with disabilities comes from the root of all stereotyping – that is, a lack of diverse experience with others. When we know very few with disabilities – and some reading this only intimately know themselves as one with a disability – we use that very limited experience to cast a wide net, incorrectly presuming that all with disabilities are strikingly the same as what we’ve learned in our limited experience. However, when we’re fortunate enough to know many with disabilities – from rock-n-rollers to recluses, from scholars to strippers – we realize that those of us with disabilities are as diverse as everyone else, where individual character traits are just that, individual.

A large part of my career is based upon addressing disability experience through writing and speaking. Yet, I truly don’t address the challenges of disability, specifically; rather, I address the challenges of life. When I note one of my signature lines, stop blaming the dealer, and play the cards you’ve been dealt, it applies so well to disability experience, but it’s strikingly universal toward all adversities in life, isn’t it? Again, disability experience is truly human experience, and when we recognize that, we remove any stereotypes, seeing all people as just that – people.

The next time that you find yourself applying specific character traits to those with disabilities, or witness others engaging in it, stop the trend in its tracks, and say, Wait a minute, this isn’t a disability thing, it’s a people thing! – and appreciate the diversity of each individual’s character traits, good and bad, where people with disabilities are simply people, after all.

Facing the Uncertain

By Mark E. Smith

If you speak with others about the effects of their disabilities toward their futures, you’ll hear a common theme: Uncertainty.

What’s interesting, though, is that most aren’t simply speaking of the literal uncertainty of their physical condition – as in, will it get physically better or worse or remain static? Rather, when most speak of how disability breeds uncertainty into their futures, they’re speaking toward the larger picture – that is, health, career, family, finances, and so on. To paraphrase the sentiments of many, As I move forward with disability, I’m overwhelmed by all of the uncertainties in my life….

Yet, what if we challenge such universal thinking with a provocative question: Does disability, in itself, truly create inordinate amounts of uncertainty in our lives, or does disability simply highlight the universal uncertainty in life, itself?

To get to the heart of the answer, we need merely to consider the world around us, from as close as family members to as seemingly removed as the stories that we see on the nightly television news – from local layoffs to distant disasters. After all, how much certainty is there really in anyone’s life?

Now, in some aspects, there’s seemingly more uncertainty in some individuals’ lives than others. For example, statistically, a Detroit autoworker’s career is more intrinsically uncertain than that of a physician practicing in Detroit in today’s economy. Yet, again, in a larger picture, uncertainty truly looms with striking equality in the lives of both. If both buy a lottery ticket, who will win or lose? Of the two, who will find love or lose love among relationships? Which might live till 89, or might die at 65? On the drive home, which will get in a life-changing accident, or never have an accident? Indeed, we could speculate on these two individuals’ futures in countless ways – all because their futures, like all of ours, are ultimately uncertain. None of us truly knows what tomorrow – or even the next 60 seconds – will bring. We can plan, prepare, and predict – but uncertainty is ultimately a fact in each of our futures.

Think about your own life and those around you – how much uncertainty have you witnessed over the past decade? Chances are, more than you realize, from unexpected situations in your own life – both positive and challenging – to world events, like 9/11 or the many natural disasters that have occurred around the globe. Maybe in your life during the past decade, you lost loved ones, had a child, were laid off from a job, got a job, became ill, got healthy, and on and on. And, if you’re like most of us, those types of events – which are part of all of our lives – absolutely contained the unexpected. The fact is, all of our futures – as shown by our pasts – are full of uncertainties. And, with few exceptions, if you have a disability, it, too, occurred as one of life’s uncertainties, where it wasn’t predicted, just another uncertainty that came your way.

Being that all of our futures are ultimately uncertain, why then are those with disabilities seemingly more preoccupied with that reality than others?

This question was especially peaked for me when I had an inspired conversation with a remarkable young woman. I would politely guess that she’s in her early 30s, and I must say that in our conversation, I was struck by her intelligence, poise, and grace. She’s one of those rare people who, even if you never met her before, you could sit down over coffee and share stories like old friends. And, in an hour conversation, we did just that – chatted like old friends, speaking of our pasts, presents, and futures. But, what deeply touched me was the uncertainty that she expressed about her future. See, she has a degenerative condition, but the long-term prognosis remains unknown. However, that fact, in itself, she candidly shared, has effected the way she sees her future, where while she once envisioned a future of marriage and children, she now focuses day to day. I got the distinct impression that the uncertainties of her condition have brought her vision for her future to a partial standstill. And, I was puzzled by it. There I was, speaking with an an amazing woman, more full of life than most people I’ve met, and if anyone has the potential to be an amazing partner and parent, she tops the list. Yet, for her, the uncertainties that her disability might have on her in the future seemingly hampered her vision toward the future, unable to look toward long-term hopes and goals. I felt like if she saw what I saw – that she has far more potential than most! – she could begin embracing the future, and stop avoiding it based on the uncertainty that she described based on disability.

In this way, I wondered why a vibrant 30-something woman, who happened to have a diagnosis of a degenerative condition, would seemingly avoid actively pursuing some of her dreams due to an “uncertain future,” whereas a woman without such a diagnosis has no qualms about the future, even though her future, too, is ultimately uncertain? After all, no one can guarantee a healthy 30-something woman that her future will be ideal, just as no one can guarantee that a 30-something woman diagnosed with a degenerative condition will have a bleak future – both individuals’ futures contain absolute uncertainties. Therefore, again, does disability, in itself, breed more uncertainty into one’s future beyond the potential for uncertainty that’s intrinsic to everyone’s life, or is it simply a false perception surrounding disability?

The answer I’ve come to understand is, no – disability, in itself, does not make life more uncertain. Rather, disability simply brings life’s uncertainties to the forefront of our awareness – and people are unsettled by the realization of uncertainty in all of our lives. See, most causes of disability are so random – resulting from an unforeseeable accident or illness – that they highlight the uncertainty of life, itself. And, while we like to dream of “ideal” futures, we don’t like to acknowledge the possibility of the countless challenges that can arise in anyone’s life. Yet, when we have to acknowledge through disability that life for anyone can change at any moment – as with my acquaintance’s life – it brings life’s uncertainties to the forefront of our minds. Put simply, when we realize that life, itself, is uncertain, it makes many people more skeptical and fearful toward the future – emotionally and mentally paralyzing some. Really, it’s almost impossible for anyone to view disability or illness and not be reminded in the immediate of the uncertainties in all of our live, and for some it’s even more impacting toward the long term.

As those with disabilities, when we realize that it’s not our individual circumstance that breeds uncertainty into our futures, but that uncertainty is merely a part of life, itself, then that acceptance becomes liberating and empowering. Everyone’s future contains uncertainties, so when we, as those specifically with disabilities, recognize that putting our lives on hold due to future uncertainties is irrational, we’re instantly liberated, no longer trapped by fear. Life is uncertain, and solely based on that fact, we should live it to the fullest. Disability or otherwise, let us not fear what could be, but embrace what actually is, and our quality of life and accomplishments skyrocket.

Count on the Counterintuitive

By Mark E. Smith

Among disability’s most intriguing aspects is in its capacity of proving counterintuitive – often to a point that makes one rethink human potential. See, the definition of counterintuitive is when we recognize that something is the opposite of what we expected – and that’s disability experience at its core.

Disability has a way of demonstrating one’s exceptional strengths among presumed weaknesses – and does so in ways that can seem so counterintuitive that they are mind-blowing. Literally, it’s often the case with disability that those who appear as the weakest are actually the strongest, where those who appear as the most downtrodden are actually the most empowered. Indeed, there’s a counterintuitive element to disability that turns common-sense perception upside-down.

Many would assume that an individual in a restaurant, who was using a wheelchair, fed by others, uncommunicative, with no facial expressions, strikingly incapacitated, might be an “invalid,” to the point that most waitresses wouldn’t likely even address the individual directly, probably assuming that the individual lacked cognitive abilities. Yet, through the amazingly counterintuitive nature of disability, that individual – using a wheelchair, fed by others, uncommunicative, with no facial expressions – could be among the most brilliant individuals in the history of mankind: theoretical physicist, Dr. Stephen Hawking.

While Dr. Hawking maybe an exceptional – albeit, perfect – example of the counterintuitive nature of disability, it can be part of all of our lives. In fact, in living our best with disabilities, our lives should demonstrate the counterintuitive nature of disability, much like Dr. Hawking’s does, where beneath the seeming obvious physicality of disability resides the extraordinary nature of human potential. While our lives with disability may appear on the surface to be all about what we can’t do, our lives at a more core level should be about what we can do, proving strikingly counterintuitive in their successes – even surprising ourselves, at times.

A common thought process is that as our bodies lack abilities, our entire lives likewise degrade. However, again, disability proves amazingly counterintuitive, where when we fully utilize our intrinsic capacities, it often demonstrates that the less physical abilities we have, the more capable we are, where the weaker our bodies, the stronger our other assets – mentally, emotionally, spiritually. Disability as counterintuitive truly goes to the root of adversity, where intuition tells us that adversity defeats us, where in actuality, it uplifts us, where the more we face adversity, the stronger we become – that is, when we harness our fullest potentials.

A friend of mine recently asked me about the counterintuitive nature of my life. “How is it that, as a guy with cerebral palsy, bundled up in your power wheelchair, you have all this stuff going for you,” he asked? “You work like a maniac, you’re in better shape than anyone I know from working out, you’re always there for your daughter. Meanwhile, there are all these people with no physical issues, who don’t seem to do anything. It makes no sense.”

Of, course, from my disability perspective, the scenario that my friend presented makes perfect sense: It’s not how much we have, but what we do with what we have that counts, where the counterintuitive nature of life proves that if we have less, we can accomplish more. During his first two years as a student at Cambridge, Dr. Hawking wasn’t by any means a distinguished student; however, it was when his condition, Lou Gehrig’s disease, set in and progressed dramatically that his success in academics grew exponentially. Quite literally, rather than Lou Gehrig’s disease hampering Dr. Hawking’s education, it inspired it – as he seemingly had less in life, he accomplished more.

I’m always intrigued – sometimes amused! – when those without disabilities note the counterintuitive nature of our lives. I was waiting for some friends at a bar, and a woman next to me struck up a conversation. Surely, she had already had a few drinks in comparison to my absolute sobriety, and she quickly warmed up to me. After a few minutes of conversation, she noted that she had slept with many men in her years, and her all-time best lover was a gentleman who was a quadriplegic. “He seemed to somehow understand the power of physical intimacy more than any other man I’ve known, even though he had very little feeling from the chest down,” she shared.

I was certainly a bit blushed by her so candidly sharing her experience with me, but what she was really expressing was her recognizing the counterintuitive nature of disability, where someone with limited physical abilities can prove among the most skilled lovers. Again, what initially seemed like a deficiency, she shared, actually was a proficiency beyond all others – proving completely counterintuitive.

In our own lives, the counterintuitive nature of disability can often engage others, not only enlightening them, but inspiring them, as well. It can change the way they see themselves and the world around them for the better. Disability often unleashes the extraordinary potential within all of us, and when others witness the results, it’s inspiring to all.

Yet, it’s not so important that others universally recognize the counterintuitive nature of disability experience. After all, not everyone will have the insight to look beyond the superficial facade of disability in its most blatant physical form. However, it is vital that we, as those with disabilities, embrace the counterintuitive nature of disability, where we don’t merely focus an any negatives, but recognizing the corrilating positives and potential in our lives that also come with disability. This process is accomplished by recognizing that our physical limitations are always mirrored by positive potentials, and by focusing on counterintuitive nature of disability experience – that is, the positive potentials that are inherent within us all – our lives flourish.

Make no mistake, the fact that disability routinely adds more to our lives than it takes seems at odds with common sense. Yet, when we look around at those with severe disabilities living empowered, successful lives, where among the most challenged prove as among the most successful, the counterintuitive nature of disability experience proves the seeming impossible time after time: When we truly apply ourselves in living with disability, weakness strengthens, defeat empowers, and challenge elevates. Indeed, based on its intrinsic counterintuitive nature, disability doesn’t have to limit us – it can liberate us.

Miles to go Before I Sleep

By Mark E. Smith

Someone recently asked me, At what point does living with disability get easier?

My answer surprised him. “Surely it takes time to accept disability – and at some point, most are able to accept it as a part of their life, and move forward with an emotional stability toward it. And, in that way, living with disability does get easier. However, on a larger scale, if you’re living with disability to any degree of success, life should never seem easier,” I said. “The moment that life seems easier, you’re truly losing the battle, both toward disability and overall.”

As I went on to explain to him, living with disability is life, itself, where the easier it is, typically the less we’re striving. See, we only grow when we’re rising to challenges, and when we’re not striving, pushing ourselves to our fullest potentials, beyond our comfort zones, we aren’t moving forward and bettering ourselves. Truly, in order to take our lives to increasingly higher levels of success, it requires constant effort and sacrifice – and that’s anything but easy.

I highly value exercise, not just for the health benefits, but because it’s a metaphor and model for empowered living. I have a wheelchair-accessible gym, and if I were to do the exact same exercise routine everyday for months, it would become strikingly easy, but it wouldn’t improve my strength or endurance. Rather, to constantly improve my physical fitness, I must increase the intensity of my exercise routine week by week, where as the workouts get harder, I get stronger – and as I get stronger, I must intentionally make the workouts harder. This same process is how we grow and succeed as individuals with disabilities – that is, the farther we evolve in disability experience, the harder we should strive, never resting but constantly propelling. We must maintain momentum to keep our lives on track and flourishing because the minute we stop, our lives effectively stop.

The evolving process for most of us with disabilities, no matter if our condition stemmed from birth or later in life, began in a notably universal way: We strove to adapt to the physical realities of our conditions, then moved on from there, addressing the emotional, social, and other aspects of living with disability as we “grew.” Now, surely some get frozen in the initial stages of evolving with a disability, where a seeming lack of personal accountability and motivation hold them back from ever living a healthy life, getting trapped in a woe-is-me state of mind. And, it’s easy to point a judgmental finger at such a 28-year-old with a disability who collects SSI, lives with his parents, and plays video games all day, and note such shortcomings.

However, complacency likewise reigns among far too many of us with disabilities who seem quite successful. In fact, in evolving through our disability experiences, many of us reach some level of personal accomplishment, and then hit the cruise-control button, noting, I developed my physical abilities, went to college, built a career, and I’m raising a family – what else can anyone expect of me as one who’s overcome disability?

The answer is, a lot. Just because we may think that we’ve “succeeded over disability,” doesn’t let us off of the hook to keep working at it – and life. See, here is the fundamental fact that everyone from those with disabilities to the mainstream overlook: We never truly “succeed over disability,” where just like every other aspect of our lives, there’s always room for exponential growth. Any success in living with disability isn’t an end, but should merely lead to our next levels of growth.

As individuals, we need to be far less impressed by what we’ve accomplished with disability, and far more concerned with what we can and must accomplish to keep our lives moving forward. This isn’t to say that we should dismiss previous accomplishments; to the contrary, we should use them as inspiring precedents that motivate us to move our lives even farther forward. But, we shouldn’t slap our disability experience on the page and declare, Done!; rather, we should look ourselves in the mirror each day and say, Great, I’ve gotten this far, but now the work really has to begin!

Interestingly, this principal of not being overly conceded about past accomplishments, but focusing on future ones, applies toward those living with progressive disabilities, as well. It’s so easy to say, I’ve already coped with so much loss of abilities, now I have to cope with this next stage – it isn’t fair! Again, the way we move forward is not by holding on to the past, but by rising to our present challenges, propelling ourselves into them with all of our might. And, with a progressive disability, one better buy into the truth that forging ahead is the only way to succeed – and to retain a sense of control over one’s life! – or life will become a disparaging mess. Keep sending adversity my way because I will rise to it, not be defeated by it, is a strikingly empowered way to live.

Where our will to move forward begins – or, hopefully, continues – is by asking ourselves, What areas of my life do I need to focus on right now to move forward in real time? And, Where am I dropping the ball or not raising the bar high enough for me to keep striving?

What’s especially interesting about such questions is that they’re easy to ask, but extremely challenging to live up to. And, that’s the point: We have to hold ourselves accountable toward constantly growing, or our lives stagnate. We have to constantly question how we can improve our lives – in both the bleakest and most successful of times – and consistently live up to pursuing the answer with all of our might. Neither the worst nor the best baseball players further their careers by sitting on the bench – they both have to consistently take to the plate and swing the bat.

Since an adolescent, I’ve been asking myself such self-critical questions about how I can continually improve my life, and I’m always striving to live up to the answers. What I’ve learned first-hand is that when striving to live up to our fullest potentials, we never “overcome disability” – life never gets easier, nor should it. After all, when it comes to living with disability, we can always improve at it, just like in living the entirety of life, itself. Sometimes in improving with disability, it’s physically, other times it’s emotionally, and yet other times it’s mentally – but we always have room to grow and improve even further. In the process, whenever we feel like giving up, or fool ourselves into thinking that we’ve succeeded, let us remember that when it comes to living with disability, we must be humble and wise, knowing that our work is never done, knowing that we mustn’t allow life to get easier, but to remain challenging as we improve further – for, as poet, Robert Frost, put it best:

The woods are lovely, dark and deep,
But I have promises to keep,
And miles to go before I sleep,
And miles to go before I sleep.