PowerchairDiaries

By Mark E. Smith

We call my friend, George, “MacGyver,” nicknamed after the television show, because he can make anything mechanical work within very little time, even when presented with limited resources. When I watch George work, his process is fascinating in that when he encounters an obstacle, he’ll often step back, assess the situation, think for a moment, then get right back to work, embarking on Plan B. What I’ve witnessed is that the way George works is that he only focuses on the resources that he has, and he fully utilizes them till he makes a task work. In situations where others would get frustrated, make excuses, or give up, George simply uses what he has to get the job done.

Whether George realizes it, his problem-solving process proves that he knows a fundamental to successful living: If we worry less about what we don’t have, and focus on fully utilizing what we do have, we succeed beyond expectations. This principle is especially important for those of us with disabilities, where we need not worry about what we don’t have, but focus on what we do have, making the most of our circumstances, disability and all.

I suppose that some might look at my having cerebral palsy, and immediately project a list a mile long of what I can’t do – you name them, from as obvious as my not being able to walk to as obscure as my inability to play a guitar, all in a list of thousands long. And, they’re right – there are likely thousands of activities and tasks that I can’t physically accomplish due to my disability. However, what such people don’t realize is that, despite my clear limitations, I’m still equipped with far more potentials than I ever need to succeed – just as we all are. Again, it’s not what we don’t have that matters; rather, it’s what we do have that counts.

I can’t walk, but wheelchairs have allowed me to graduate schools, maintain a rewarding career, and raise a family.

I don’t have the dexterity to write with a pen, but my ability to type with a single finger has allowed me to author a host of books, write countless articles, and run a leading web site.

My speech isn’t perfect, affected by my disability, but it has allowed me to reach thousands upon thousands on stages across this land.

Maybe I don’t have all of the physical abilities that others have, but I don’t need them – I have precisely the potentials that I need, and by simply utilizing what I have to the fullest, it allows me to succeed to a tremendous degree every day.

Among the traps of disability experience is when one becomes stuck in a cycle of dwelling on what one can’t do, what one doesn’t have, or what one has lost:

If only I could walk….

If only I wasn’t ill….

If only I had the abilities that I used to have….

However, such thinking gets one nowhere but in a rut of depression, complacency, and denial. Such thinking really keeps one in a mode of excuses, shunning accountability, defeating one’s potentials for success. When one only focuses on what one doesn’t have, one is really looking for permission not to do anything with one’s life – one is taking the easy way out.

A friend of mine is presently dissatisfied with his job, and when I inquired if he had his resume’ out on the market, he said, no. “It’s among the worst job markets in the history of the U.S., unemployment pushing 10%,” he explained. “Why would I go look for a better job now?”

“…Because millions of people probably share your negative outlook toward the job market,” I said. “Everyone’s so focused on the lack of opportunity and the bad economy that many aren’t even bothering to look for better jobs. If you’re the one guy who ignores the mass negativity of job loss numbers, and focus on the opportunities that are out there, I bet you’ll be amazed at the opportunities you’ll find. Don’t worry about what jobs aren’t available, focus on the ones that are.”

This same approach applies to disability experience. If we focus on all that we don’t have – that is, the limitations in our lives – we’re not focusing on the potentials that we do have, which is a mind set that holds us back with greater force than any physical limitations. Again, whether you’re like Lance Armstrong, able-bodied to seemingly super-human strength, racing for an 8th Tour de France title, or Ed Roberts, paralyzed from the neck down by polio, but went on to found the independent living movement and serve as a government official, you have all that you need to succeed – you need merely to recognize your strengths and potentials, and harness them.

Lincoln, in the Gettysburg Address, proclaimed that all men are created equal. And, despite his intent of legal and social equality for all, I believe that he stopped short of a far greater meaning: We all have an equal opportunity to reach within ourselves and live up to our fullest potentials, whatever they may be. Let us not focus on or regret what we don’t have; rather, let us recognize the amazing potentials and gifts in our lives, then strive to utilize them to the fullest – with tenacity and perseverance – toward success. Put simply, we’re all equipped with what we need to succeed on our individual paths – we just need to acknowledge our good fortunes and put them to greater use. We need to look toward the positives in our lives as conduits for success, not dwell on the negatives. What we don’t have in the way of physical abilities is far less consequential in the grand scheme of our lives than many realize; rather, it’s our present abilities and potentials that make all of the difference in our lives. If we can’t run, walk; if we can’t walk, let us use a wheelchair – and what we’ll find is that getting to our dream destinations remains entirely possible, just a different mode than some others use. That is, we always remain equipped for success – we merely need to use all that we have to pursue it.

No, I can’t walk, my speech isn’t perfectly clear, nor can I physically perform countless tasks. Yet, it hasn’t hampered my successes or quality of life. Why not, some may wonder? …Because I always know where to look for solutions: My equipped potentials.

By Mark E. Smith

Within one week, I received two flat tires on my wheelchair during my morning treks by sidewalk to work. Wanting to know where I was suddenly getting flat tires in the morning, I traced my route, discovering that a home that I passed by each morning had recently underwent renovation, and the sidewalk in front of it remained littered with nails and staples. I immediately avoided that part of my route, resulting in no more flat tires.

A few weeks passed, and while distracted by thoughts of my busy day ahead, on the way to work I fell back onto my old sidewalk route, and mistakenly rolled right in front of that recently-renovated house – and, by the time I got to work, I had yet another flat tire.

I’ve since avoided that house most days, but because it’s on the route I’ve taken for years, I’ll occasionally catch myself heading toward it. However, when I’m on my game, paying attention, I’m aware to change my course, avoiding that house – and flat tires.

Disability experience – which is truly rooted in human experience – is a tricky course, as well. And, if we’re going to succeed at living with disability, it takes exceptional tenacity, discipline, and perseverance – we must pay attention to where we’re heading. After all, with social stigmas remaining, and social-economic realities that place us at statistical disadvantages ranging from education to employment to relationships, we must play our A-game in order to compete with the mainstream.

However, what succeeding at disability experience – make that, human experience – doesn’t require is perfection. And, the sooner we realize that, the faster we can get on our courses to success.

When it comes to how others generally view us as those with disabilities, we fall into two stereotyped camps: Helpless or super-human. If you merely consider news stories regarding those with disabilities, they’re truly at the two extremes, rarely in the middle, where we’re either portrayed as helpless victims or inspiring heroes. And, in many ways, being seen as inspiring heroes – not just in the media, but in our families, workplaces, and communities – is a flattering but daunting image to live up to. Yet, we can live up to it – that is, as long as we acknowledge within ourselves that we’re not perfect, that we occasionally stray off course, as everyone does; but, we’re just as capable to get right back on track, regaining healthy perspectives, and living to our fullest potentials when we strive and pay attention. In plain terms, we may get flat tires from time to time, but when we’re aware, we can very effectively strive to avoid them as we move forward.

No one can deny that disability experience is extremely complex, even for those who have mastered it. As I experience in my own life, the range of daily emotions can be vast, from feeling in complete command of my profession at work to feeling demeaned on some level by a stranger in the world at large who may write me off as inept upon mere sight of my wheelchair. Sure, I’ve learned to live with a heightened awareness, understanding, and patience – I don’t personally flip-out when I encounter circumstances involving ignorance. However, I’m not perfect, and I’m still effected by the emotions of living with disability like everyone else – that is, I remain vulnerable to the diverse effects of human experience, even insecurities. I can find myself having bad moments directly or indirectly relating to disability – where vulnerabilities and insecurities creep up – temporarily deflating me like a flat tire on my wheelchair. And, it’s normal for everyone to experience moments of frustration, weakness, vulnerability, insecurity, or a myriad of other emotions as we go through life, disability or not.

During these moments, we can likewise make regretful mistakes, from lashing out at a person who simply offers to open a door, offended that someone has inadvertently acknowledged our disability, to resenting able-bodied siblings whose lives on two legs appear perfect – all based on our vulnerabilities and insecurities relating to disability experience. In fact, in my own life, I know that as secure and outgoing as I am, a few drinks in me on a Saturday night at a social event cancels out my cerebral palsy, makes me ten years younger, and magically gives me the eloquence of James Bond – at least in my one-too-many-drinks mind. Yet, as fun as such let-loose nights could be, I recognize that some of my behavior in these situations in the past has been based on my own vulnerabilities and insecurities as one with a disability, and as a man, in general – that is, “a drink” squelched some of my own social insecurities. In this way, I understand that I’m not perfect as one with a disability or as a man – vulnerabilities and insecurities find their way to the surface from time to time. Yet, what I’ve come to recognize is a far more valuable lesson: I need to consistently strive to be truer to my potential in such moments, and I need to remind myself that while I have vulnerabilities and insecurities, I can also control them, and harness them to hopefully become a better person, more adept at living as a whole, disability and beyond. I don’t need a drink to charm the pants off of a crowd – I just need to muster the courage to acknowledge my insecurities, and then apply the willpower needed to push forward regardless of them. One might say that when it comes to living with disability, and as a person of true character, it’s an ongoing process of learning to recognize and avoid the areas in our lives that can cause flat tires.

A friend of mine, with a life-long disability, has worked since he graduated college at 22, maintaining an amazing work ethic of 12- to 14-hour days. Now approaching 50, his body isn’t as forgiving as it once was – his condition has wracked his skeletal system to where, by the end of the work day, he’s in tremendous pain, unable to really enjoy his home life.

My friend’s family has suggested that he slow down, cut back his hours at work, or maybe even retire. But, my friend won’t hear of it, he won’t admit any vulnerability – he’s overcome every other challenge in his life, and he won’t give into this one.

However, the real notion that he won’t give into is that he’s human, with vulnerabilities and insecurities just like the rest of us. “You’re super. And you’re human. But, you’re not super-human,” I told him. “None of us are. So, get real about your vulnerabilities, including relating to your health, and address them responsibly. If that means dialing back your career for the sake of your health and family, it’s the honest move to make.”

As one with a disability striving toward success, you’re going to find yourself in vulnerable, insecure moments, where you may feel defeated or regretful. And, it’s normal. However, the key is to not allow these moments to derail you in the long-term, but to acknowledge the situation and emotions, and move forward in positive directions as one who’s not perfect, but is trying to live up to your sincerest potentials:

Mark, I’m nervous and scared about this job interview – how are they going to react to my using a wheelchair? You’re right to be scared and nervous, just like every other candidate, and you have disability on top of it. However, remember, you’ve gotten through other job interviews before, and your resume’ and education are impressive. Acknowledge your anxieties, remind yourself that they’re normal, and move through the interview with increasing comfort as you go.

Mark, I want to ask this special someone out on a date, but I’m too scared about my whole being-in-a-wheelchair thing…. Fear of rejection is among the most common insecurities everyone has – and it prevents many people from asking others on dates, regardless of disability. Recognize that your apprehension is normal – the person you wish to ask out has likely experienced, too! – then be bold and ask the person out. If you get turned down, it’s no big deal – we’ve all been there. But, you’ll never get a date unless you acknowledge any fear of rejection, and move forward despite it.

Mark, I feel so awkward at events as the only one with a disability, so I have a few drinks to break the ice, but end up drunk and stupid…. Again, almost everyone feels awkward and uncomfortable in such social situations. We’re by nature social creatures, and want to fit in, so a foremost fear is feeling like an outsider in a crowd – and disability can magnify that experience, where we can perceive ourselves as “sticking out” even more. It’s natural to feel awkward and out of place, but it’s certainly not normal to drink to excess. And, what I’ve learned is that if I can fit in after a few drinks, I can fit in even better totally sober, with my wit and personality in full clarity – and the same holds true for you. When you roll in the door, know that you’re not the only one nervous about being there, and move forward with a confident smile. Then, you’ll find that others will gravitate toward you, turning your self-acknowledged insecurities into an asset.

My point is, we all have vulnerabilities and insecurities – which disability can magnify – but they’re really just universal to human experience. However, when we’re honest with ourselves and admit them, then we can address them in healthy ways, moving forward with a self-candor that empowers our lives.

No, we’re not perfect – we all have vulnerabilities and insecurities. Yet, let us not forget that even when our vulnerabilities and insecurities creep up on us – sometimes resulting in frustrations, regrets, and mistakes – we still are capable of striving toward our fullest potential by addressing our natural, understandable emotions in healthy ways. I say that while none of us can live perfectly, each of us surely can strive to live capably.

By Mark E. Smith

Years ago, I taught a semester-long course at a community college, focusing on overall study skills for struggling students. During the test-taking strategies portion of my class, I discussed the importance of not getting hung up on questions to which you don’t know the answer; rather, you should keep moving on through the test, answering the questions that you do know, so that you don’t run out of time due to wracking your brain on lost causes. Put simply, don’t throw away easily-answered questions because you get hung up on questions that you can’t answer, wasting valuable time.

This same principle holds true when it comes toward addressing others who demonstrate ignorance or bigotry toward disability. Let us not focus on trying to educate others who obviously will never accept those of us with disabilities. Rather, let us focus on those who may not initially understand disability, but demonstrate a willingness to learn, grow, and accept others on common ground, using our efforts and time wisely to bring positive, effective change.

I recently received an email from a higher-up in the mobility industry. The email expressed the individual’s assessment of wheelchair users as a whole, from the individual’s view as an able-bodied person working in the wheelchair industry. No, the individual didn’t send it to me, personally, and for good reason: This person’s views expressed in the email conveyed little more than bigoted contempt for consumers who use wheelchairs – it was belittling and dehumanizing toward those with disabilities.

Of course, as email works, this email found its way to me through several forwards, landing in my email box, both because the original subject, a consumer issue, related to my industry roles, and also because others in the email chain clearly had a conscience, implying, Mark, can you believe this person not only thinks this, but actually emailed it!

So, I had this email on my screen, from an industry person belittling those with disabilities, where I rightfully felt anger as a consumer advocate, embarrassment as an industry leader, and hurt as one with a disability – but, what was I to do with the email, and how should I respond?

To their credit, others in the email chain had already replied to the person, subtly hinting to the individual that the condemnation of those with disabilities was off-base. However, the situation surely warranted far stronger action – the person logically needed to be escorted to the door of the mobility industry. After all, if one believes that those with disabilities are beneath oneself, belittling and mocking them in a “professional” email, one has no place in the mobility industry.

For a moment, I debated forwarding the email to the person’s boss, someone of great integrity, who I trust would be mortified that an employee was emailing such belligerence, not just toward those with disabilities, but toward their company’s literal customers, all in one malicious swoop.

But, I didn’t forward the email to the person’s boss, nor did I reply with spite or a lecture. I simply replied toward the consumer issue that apparently triggered the person’s bigoted email, and I addressed that topic professionally and calmly, glossing over the individual’s belligerence toward those of us with disabilities.

So, why didn’t I pursue any type of “corrective action” toward the person who sent such a disturbing email belittling those with disabilities? Why did I just let it seemingly slide?

Because, as one with a disability, I know better than to waste my time on those who clearly demonstrate a lack of capacity toward accepting others of diversity. I knew in the instance of that email that my larger efforts for the day were best served by taking a deep breath, recognizing the futility of the situation, and getting back to work in the areas of my profession where I could make a difference. In blunt terms, I had a lot of work to do that day, and I would serve no one by wasting my time admonishing a person who demonstrates no capacity for rational thought or acceptance of others.

The fact is, that person’s disdain toward those with disabilities was made explicitly clear in the email – and seeing that the person is older, having worked in the mobility industry for some time, I recognized that no one was going to change that person’s attitude. Sure, we can reach out others who simply aren’t familiar with those with disabilities, and help them see that there’s no difference between those with or without disability. However, when someone works in the mobility industry, then degrades those with disabilities behind what one thinks are closed doors, no one’s changing that arrogant, belligerent person’s attitude, ever.

Now, you maybe thinking, But, Mark, you can’t just let someone like that continue on with such hurtful behavior.

Actually, I’m more than glad to let people of no seeming redemption continue on with wherever life leads them. Again, we can’t waste our time and effort on lost causes. Sure, I could get myself all riled up, focus all my might toward “showing that person.” Yet, it would have no effect on that person in the end, but would consume my time and detract from my own life. Look at it this way, even if the person who wrote the email was fired, it wouldn’t change the person’s bigoted view one bit toward those of us with disabilities, so what truly would come from my – or anyone’s – raising a fuss?

The answer is, nothing. Yes, it might force the person out of the mobility industry, but it wouldn’t change the person’s attitude toward those with disabilities – and, it’s the changing of an attitude for the better that’s the goal. Therefore, if you can’t create true change in someone of seeming ignorance, don’t waste your time. See, our mission has to be to make a positive difference in others’ lives, and if we waste our time hassling those who demonstrate no willingness to learn or change, we miss out on more productive opportunities.

I should note that one must not confuse dismissing unchangeable personal ignorance with systemic civil rights issues. Surely, we must assume a reactive position upon blatant discrimination – the larger stakes of social equality are too consequential toward all with disabilities in our society to just let slide. However, it’s important to recognizes the clear difference between social injustice and a single individual’s belligerence, where a social injustice effects many, but a single person’s ignorance in most cases doesn’t truly have the power to effect anyone. After all, many people act poorly on a daily basis, but it’s of no consequence to the world at large – that is, a driver honking his horn in traffic might tick someone off in that instant, but it’s of no universal consequence, so we just let it go without a second thought. And, the same holds true when it comes to individuals expressing ignorance or bigotry toward those of us with disabilities – their attitudes are of no final consequence in the world at large, so we shouldn’t concern ourselves with them as individuals or take it personally. Let small-minded people live in their small world while you thrive on your path of success and greatness in the world at large.

For those of us with disabilities, we need to have very deliberate discretion toward how we address ignorance, bigotry, and discrimination by others. We must not waste our energy, emotions, and time on those incapable of understanding – that is, you can’t change or educate someone who clearly demonstrates a lack of capacity, and if you constantly try, you’re wasting the fruits of your own life. If you have a disability, you will occasionally meet people unwilling to accept you. And, when you encounter such circumstances, don’t take it personally or emotionally invest in it – just let it go, and move forward on a positive course.

On the other hand, there are many people who we encounter every day, who simply have never really interacted with someone who has a disability – from bank tellers to children to colleagues – and we should make every effort to reach out to them, demonstrating with our own kindness and patience that those with disabilities are just people, after all. And, they will learn, grow, and reciprocate because of it, where they, too, will make the world a more accepting place for all.

No, not everyone accepts those with disabilities – and it’s important that we recognize that fact. When we encounter profoundly incorrigible bigotry by an individual, let us not get bogged down or dwell, but let us simply move on with our lives toward positive directions. After all, there are many others who may not be familiar with disability, but show a willingness to open up, grow, and accept others, and that’s when we should stop in our tracks and engage the situation toward the positive.

Here’s the golden rule of addressing those of seeming ignorance toward disability: Disregard the hopeless, focus on the hopeful, and your efforts will have the greatest impact.

By Mark E. Smith

If you had to chose between a chunk of coal and a three-karat diamond, which would you chose?

Of course, based on monetary value, you’d likely pick the diamond. And, so would I – but, not for monetary value. Rather, I’d pick the diamond based solely on its origin. See, I value strength and perseverance above all else.

As geology works, a chunk of coal and a diamond start out as the same thing: A coal deposit. However, when a coal deposit sinks deep enough into the earth, and is subjected to immense pressure and temperatures – 60,000 times normal air pressure, at 2,300 degrees Fahrenheit – a diamond is formed. Think for a moment, then, about how when an ordinary substance, coal, is placed in the worst circumstances imaginable, it evolves into an astoundingly more precious entity, a diamond.

And, as people, we’re no different. For many of us, experiencing among the seemingly worst circumstances in life hasn’t defeated us, it’s made us stronger and better – transforming us from coal to diamonds, you might say.

An interviewer recently asked me who I admire and why? My answer was, I admire anyone who’s gone through adversity and come out better, not bitter. The fact is, while I appreciate all people and successes, I have an especial appreciation for those who have overcome seemingly insurmountable odds to achieve success, those who have gone from coal to diamonds – and learned their lessons well. As those with disabilities, these are the types of people who we should both admire and emulate.

I’ve long had a friend who has spina bifida and has worked on Wall Street for a decade, earning well into six figures – that is, until he was laid off last fall in the economic shakedown. The day after he got his pink slip, he called me, despondent about the situation. He had a wife, three kids, two homes, and three cars, with some savings, but not much. “Everyone I know is out of work and looking for a job – and they don’t have a disability,” he explained to me. “How am I going to find another job in this economy, with the disadvantage of a wheelchair strapped to my butt?”

“It seems pretty simple to me,” I replied. “You’re going to account for every adversity that you’ve ever faced, realizing that all of the challenges that you’ve overcome till this point have built an emotional and mental strength within you that many others simply don’t have. You survived growing up as a foster child with spina bifida, put yourself through college, and maintained a high-pressure, big-money job for over a decade. Really, a guy with your life experience is truly incapable of buckling under a job loss. This situation may be a life crisis to others, but it’s merely an inconvenience to someone with your track record. Trust me, you’ll be ahead of the game before you know it. Guys like you don’t hit roadblocks – you only encounter speed bumps.”

Within three weeks, my friend was named CFO at a private equity firm, with a salary increase of around 25% from his prior job. “It all just fell into place,” he told me recently.

Of course, it truly didn’t all just fall into place. Rather, what my friend discovered was that when we successfully live through life’s toughest challenges – disability, poverty, a dysfunctional childhood, divorce, job loss, you name it – and we invest what it takes to learn and grow from the circumstance, we solidify our ability to overcome any future challenges – we become stronger and more skilled at succeeding despite adversity. Put simply, under the worst circumstances, coal turns into a diamond, a phoenix rises from the ashes, and we elevate over obstacles. Pick your metaphor, but the truth is this: We have the amazing capacity to not be destroyed by adversity, but to literally excel from it – life has its way of delivering its most invaluable gifts in even the most seemingly bleak circumstances.

I recently had a weekend speaking engagement in Michigan, where I had to fly in, stay overnight, and fly home, all with my power wheelchair, of course. In recent years, I’ve traveled mostly with companions because it’s dramatically easier, where he or she can assist me with all of the complications that occur when traveling with a severe disability. However, for this particular trip, I had no one to travel with – so I was on my own for the first time in several years. “Are you sure you can handle this trip by yourself?” my sister asked.

“Let’s see,” I said sarcastically, “I once was stranded overnight, alone in Chicago, when my flight was canceled. Philadelphia International once dropped my power wheelchair off of the plane’s conveyor belt, and shattered the joystick. I sat for six hours once on an airplane undergoing emergency service in San Francisco, only to then miss my connecting flight in Pittsburgh, where my luggage was then ultimately lost. So, I’m thinking that as long as I’m wearing my lucky pink tie, and the plane stays in the sky like it’s supposed to, I can handle anything that goes wrong along the way to Grand Rapids and back….”

The fact is, in order to survive with disability, we become master problem-solvers. In the simplest terms, when we can’t perform a task one way, we have to find another way to do it – that is, we emotionally, mentally, and physically cope – and, when we do, not only do we move forward, but we also create a legacy of accomplishment and confidence. This same strategy proves invaluable to every aspect of our life. See, disability intrinsically teaches us that when when problems arise, and we face them head on, we ultimately find solutions and success.

Peers with disabilities often come to me with the weight of the world on their shoulders, feeling defeated by disability:

Mark, I don’t think I can take any more of this.

Mark, life has become too hard.

Mark, every day just gets worse.

And, my response is clear: We mustn’t buy into such a defeatist mentality. As those with disabilities we possess the ability to choose our paths. We can choose not to be defeated, but to be empowered. And, we can chose not to be victims, but to be victors.

It is true that not all of life’s challenges are equal; but, when we view our intrinsic strength to overcome them as equal, even the biggest of challenges becomes not just manageable, but empowering. As I believe, Surely, you can knock me down – and, I’ve been knocked down many times. But, make no mistake, I will get up again, just as I always have. And, when I do, I don’t just get up – I get up emotionally and mentally stronger, with lessons learned, ready to rise higher.

And, that’s the way that we should view all of life’s current and future challenges: Based on our proven abilities to get this far in life – where we’ve gotten up each time we’ve been knocked down – any current or future challenges must be recognized as entirely manageable, as temporary inconveniences, not life-changing crises. No matter the circumstance, till our very last breath in this life, we shall move forward not as dissolved, defeated victims, but as evolved, empowered victors.

Really, life is basic seamanship: The more experience that we’ve had navigating rough waters, the more skilled we are at weathering any storm. In this way, we must remind ourselves, I’ve been there, survived it, and I’m equipped to handle whatever life throws my way. Every new challenge simply moves my transformation even closer from being a chunk of coal to a polished diamond.

By Mark E. Smith

It’s official – I’m now certified to operate a boat in the state of Pennsylvania and federal waters. Yes, with my boater’s certification, I can even legally dump all of my trash, except for plastic, in the Atlantic Ocean as long as I’m 25 miles offshore, and I don’t have to report a man overboard for 48 hours – how cool are those perks?

It turns out that Pennsylvania recently made getting your boater’s “license” much more stringent, complete with what they claim is three hours of course study (but actually takes six), where you must pass seven chapter quizzes and a final exam – I supposed it’s designed to prevent guys like me from operating boats.

But, I passed!

Now, you may be wondering why would a severely-disabled guy like me get a boater’s license? To operate a boat, of course! Actually, the only real hobby that I ever had was boating, where I owned two boats in California years ago. But, it was a different place and time to where I’ve been the last decade or so.

In California, I lived a stone’s throw from a marina and the San Francisco Bay, and I had a great support system of friends who were also into boating, gladly helping me pursue my passion, physically assisting me however needed, from launching my boat, to transferring me aboard, to helping me maintain it. And, I was great at the helm. Whereas cars require fine motor skills, boats are far more forgiving – and, completely hand-controlled – where I could maneuver my boat as well as anyone, from docking to running miles offshore in demanding seas. It wasn’t uncommon for me to be at the helm at 5:00am on a Saturday morning, passing under the Golden Gate Bridge, heading 10 miles out in the Pacific for a day of trolling for salmon. Sure, the Coast Guard looked a little perplexed by my awkward body movements and slurred speech the few times that they pulled along side me for routine safety checks, but the minute that I explained, “I have cerebral palsy – oh, and I’ve been drinking heavily,” they understood just fine.

In the late 1990s, needing to concentrate on my newborn daughter and career, I sold my last boat. They say that the two best days of owning a boat are the day that you buy it, and the day that you sell it – namely because boats require a lot of time and financial responsibility. But, for me, I’ve definitely missed my boats. However, in living life in Pennsylvania, occupied with work and family, I’ve found a million reasons why I could no longer pursue my passion for boats: I’m too busy with work; I don’t live near a major body of water; I can’t tow a boat with my accessible van; I don’t have room at my home to store a boat; I can’t launch a boat or imagine how I’d even get aboard a boat without two strong guys helping me; and, my daughter’s college fund has rightfully been far more important than putting money into a boat.

And, all of those are absolutely realistic reasons as to why someone as severely disabled as me, at my point in life, can no longer pursue a passion like boating. Sometimes we must accept life’s changes and move forward without regrets.

But, not always. See, a lot of times it’s not the seeming physical realities of our disabilities or lives that limit us, but our own narrow thinking. And, so, I got to really thinking about boats again over the past year, wondering, Is it truly impossible for me to ever own and operate a boat again, or am I boxing myself in, preventing pursuing among my foremost lifelong passions due to narrow thinking? More bluntly, was I letting my perception of my disability keep me from living to my fullest? In fact, from time to time, I said to my family the dreaded only-if statement: Only-if it wasn’t for my situation – if only I didn’t have cerebral palsy – I’d have another boat in a heartbeat….

Such only-if thinking never works, though, and I know that whenever in life I’ve found myself going into only-if mode, I’ve needed to turn my bow into the wind, and start thinking what-ifs?, steering myself toward a more positive horizon.

To turn my boating only-ifs into what-ifs?, I made a list of what I literally couldn’t do when it came to boating, then I tried to come up with a creative what-if? question for each problem, seeing if the thought process might lead me to solutions:

I don’t live near coastal waters, but what-if there’s a terrific lake in my area for boating that I’ve overlooked?

I can’t trailer, launch, or store a boat; but, what-if it was permanently birthed somewhere, in the water, ready to go, at a wheelchair-accessible dock?

I can’t climb aboard a boat, but what-if there’s a style of boat that I could somehow transfer onto myself?

Boats are expensive, but what-if there are the less-costly alternatives?

So, I spent the winter working through the possible what-if? answers, limited not by my physical disability, but by only focusing on creative solutions. And, where the answers led me was surprising.

It turns out that there’s a beautiful lake, with 52 miles of shoreline, only 40 minutes from my house. On the lake are full-service marinas, where for a very reasonable annual rate, you get your own boat slip, where they launch your boat in the spring, take it out in the fall, store it on land during the winter, and offer full marine service in-between – and, some of the docks are even wheelchair-accessible. During boating season, May through October, I could roll from my van, right to a boat, and never have to worry about towing, launching, storage, or service.

As for what type of boat that I could physically access, I found that many pontoon boat models actually take wheelchair-accessibility into consideration, where their totally flat decks, wide boarding gates, and accessible aisles allow one using a wheelchair to roll on board, and transfer into the helm seat. And, while pontoon boats offer the performance needed for family fun of water skiing and tubing, they’re notably less expensive than comparably-sized conventional runabouts and cruisers.

Therefore, I went from seeing no possible way of ever boating again, to knowing that I could literally roll onto my own boat and hit the water on weekends with the family, all with just a little creative thinking and research – and a little hard-earned, long-saved cash, of course.

What’s amazed me in this process, though, isn’t so much that I figured out a way to once again to pursue my passion of boating. Rather, what’s amazed me in this process has been my realization that I once again discovered among the most valuable tools that we each have toward living with disability: The ability to change the outlooks in our lives from an assumption of can’t to a question of what-if?, merely by opening our minds to all possibilities: Can’t is an end, but what-if? creates a beginning. And, when we catch ourselves thinking can’t, we need to immediately switch to what-if?:

I can’t go to college – I have a severe disability, don’t drive, and have no money for tuition. What-if I find out about services for disabled students at the community college? What-if I sign up for paratransit transportation to campus? What-if I file for a tuition grant?

I can’t move out of my parents’ home – my disability makes it impossible. What-if I find out about accessible, subsidized housing? What-if I learn how to arrange attendant care? What-if I contact the independent living center in my area?

I can’t drive or afford an accessible van – that would be too difficult for someone like me with this disability. What-if I speak with an adaptive driving instructor and pursue an evaluation? What if I contact Vocational Rehabilitation to see if I might qualify for accessible van funding?

Indeed, what-if? questions create doors of opportunity in all areas of our lives, where rather than assuming a can’t outlook, asking ourselves what-if? questions changes the rules, unleashing our fullest potential. There’s no secret to it, as all great minds have historically asked what-if? questions – every invention, scientific breakthrough, human advancement, and personal revelation has come from asking ourselves what-if?

The next time that you feel limited in your situation – in any seemingly impossible situation! – begin simply asking yourself what-if? questions, seeing where they lead. You’ll be amazed by the astounding possibilities and opportunities that suddenly appear in your life.

By Mark E. Smith

My two-year-old nephew is convinced that he’s ruler of the universe. And, I can see why he believes it: He can be in a room full of strange, jaded adults, and as if a performer on queue, he’ll utter one simple word, “Elmo,” in his tiny, toddler voice, and everyone melts over the kid like he’s the most precious being on Earth. Then, to the contrary, if he wants something, but doesn’t initially get it, he throws a public tantrum, eventually getting his way from someone who simply wants to squelch his screaming. Of course, his pint-sized ego just eats it up, thinking that he has everyone right where he wants them – catering to him, the King.

What my nephew doesn’t understand, however, is that if he’s ever to grow into a healthy child, and then a successful adult, at some point he’ll have to realize that the world’s not about him at all, that he’s a bit player who will eventually have to earn his way in the world by giving to others, or he will fail in life. See, when you’re two, you can get by thinking that the world’s all about you. However, when you’re 22, and you still think that the world’s all about you, it makes it really hard to succeed, where you flunk out of college, get fired from jobs, and lose friends because you’re a self-centered, childish jerk. Instead, as healthy adults, we must realize that success and the respect of others must be earned – namely through hard work, humility, and appreciating others – that the world isn’t about us, but is really about everyone else. And, it’s how we treat everyone else that dictates our success.

Interestingly, disability experience can prove a lot like living as a two-year-old, where the world can seem all about us as individuals – and it’s a self-defeating trap to fall into, where if we want to succeed, we must grow beyond ourselves and our disabilities.

Make no mistake, disability experience begins as a socially slippery slope, where no matter the origin of disability, it simply starts by seemingly focusing the entire world on us. If you’re born with disability, you’re immediately labeled as “special needs,” where there’s typically a hyper focus on you as a child, from home to school and beyond. Doctors, teachers, family, and even strangers in the supermarket will focus on you with an intensity that many children never experience.

Similarly, if you acquire a later-in-life injury or illness, the world immediately becomes about you, where family and friends are suddenly hyper-focused on you and your circumstance. Siblings fly in from out of town to be by your side. Parents make you their “baby” again. Your church’s congregation places you on its eternal prayer list. And, the entire town takes you to heart.

In these ways, when one with disability experiences the intrinsic hyper focus of others, it’s easy to become that two-year-old living in an all-about-me world, where being the center of attention is par for the course.

Yet, if you’re going to succeed – no matter how severe one’s disability, or how ravaging one’s illness – you need to get over yourself and your disability, period. The fact is, when we make life all about ourselves, it ultimately creates isolation, builds resentment in others, and destroys our lives. Successful relationships are a two-way street, where we must give to others just as they give to us. And, when we make our worlds all about ourselves due to disability, we create relationship dynamics that are a one-way street, never considering others, and we simply drain those around us. If we’re going to maintain healthy relationships, disability or not, we must routinely put others before ourselves.

In very fundamental terms, we should feel good when others are concerned about us and our disabilities. And, sharing our needs, thoughts, and frustrations is fine. However, we must remember that those around us – spouses, children, siblings, parents, and friends – have needs too, and it’s our obligation not to overlook them by getting hyper-focused on ourselves. As I like to say, disability, may feel at times like you’re struggling to carry a boulder on your back, but don’t forget that others are carrying boulders, as well. Let us not forget that we have the capacity to support others just as they support us, that disability doesn’t preclude our obligations to be there unconditionally for others.

You may have a disability, but at this moment, it’s not more important than your spouse’s rough day at work.

You may have a disability, but at this moment, it’s not more important than your child’s excitement over her basketball game tonight.

You may have a disability, but at this moment, it’s not more important than your best friend’s romance on the rocks.

You may have a disability, but at this moment, it’s not more important than your parent’s anniversary.

You may have a disability, but at this moment, it’s not more important than anyone around you, it’s not more important than anyone else’s struggles, successes, or needs.

Interestingly, while being self-centered pushes people away, extending yourself to others out of appreciation for their plights actually brings people closer. Isn’t that intriguing: If we put ourselves first, we end up isolated, but if we put others first, we end up surrounded by healthy relationships. Why is that?

In blunt terms, because no one ultimately likes a self-centered person – regardless of disability. You may feel like the world revolves around your disability, and your family and friends may seem to support that view – but the world doesn’t. And, if you make every day, minute, and conversation about you and your disability, you’ll see brevity – even resentment by others – occur in your relationships. Your best friend is surely concerned about your condition, but he or she also wants to discuss his or her life – that’s what healthy friends do! – and if you make your conversations all about you and your disability, you’ll see that friend drift away. This fact of the importance of maintaining two-way relationships holds true in connecting with spouses, children, parents, and siblings, as well. All-about-me two-year-olds are charming; all-about-me 40-year-olds with disabilities are offensive, and ruin relationships.

Now, some adults are simply self-centered jerks, and disability or illness merely fuels their pity parties – and there’s nothing that we can do but ignore them. However, many of us with disabilities aren’t intentionally all about ourselves, but are understandably distracted by the “boulders” that we carry – and merely reminding ourselves to change the focus from ourselves to others on a daily basis can revolutionize our relationships for the better.

While disability or illness may be a part of our lives, we must remember that others around us should come first – and it’s to everyone’s betterment, including our own. After all, disability in itself doesn’t serve us emotionally – it doesn’t uplift our spirits, offer companionship, or extend love – so placing disability before others in our lives is self-defeating. Instead, we should reach out to others, making our lives about them – take an active role in their lives, be there for their needs, focus on how we can best serve them – and, in that process, our lives flourish, where we open ourselves up to others in the most complete ways. Life is a boomerang: When we are sincerely receptive to others, they are receptive to us – it’s the two-way nature of healthy relationships at work.

What’s more, putting others before yourself and your disability or illness gives everyone a much-needed stress relief. Loved ones, friends, and caregivers can be just as hyper-focused and stressed-out over your disability or illness as you are, so shifting the focus and conversation from your situation to others’ gives everyone a break from disability – and that’s vital toward a balanced, healthy view in life. Talking only about how terrible you feel brings everyone down, so make the initiative to discuss what’s going on in others’ lives – including the positive – and it will inherently uplift everyone’s spirits.

On this discussion, some might argue that struggling with one’s own disability, or fighting for one’s own life, leaves no capacity to be there for others. However, again, such self-centered, disability-focused thinking is a cop-out. Most often, being there for others simply means placing your own circumstance aside for a moment, and simply listening to others with genuine regard. One can literally be completely paralyzed, on a respirator, in the hospital, and merely ask a spouse, child, or friend, “How was your day,” and intently listen – and that seemingly small gesture serves others to a remarkably intimate level. See, being there for others doesn’t take the ability to walk or even speak; rather, being there for others simply takes your honest interest and the willingness to listen at any given moment. If you can do more for others – socially, emotionally, or charitably – that’s great. However, simply being there, placing your own issues aside, focusing on another person’s life and interests by listening, is often the greatest gifts that we can give others – and that’s easily accomplished by anyone, regardless of disability.

Disability and illness can be complex, frustrating, and consuming. However, you owe it to yourself and others not to assume the role of a self-centered two-year-old, reminding yourself that the world’s not about you or your disability. Rather, what the world is about is shared human experience, where although our circumstances vary, we need each other’s support. Don’t allow your disability to get in the way of your connections with others due to a hyper-focus on yourself. When you’re around others, make it a point to focus on the other person – it’s that simple. Sure, it’s easy to let others know us; but, it’s especially rewarding when we make the effort to truly know them. Put others first, and your world will exponentially expand, becoming more about shared humanity, and a less about any limitations of disability.