Facing Flat Tires

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.

Sometimes, Just Roll On

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.

Diamonds in the Rough

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.

When Diagnosis Isn’t Distinct

By Mark E. Smith

If someone with cerebral palsy told you that he wanted to attend a camp for those with muscular dystrophy, then go to the annual Little People Of America convention, then join a multiple sclerosis support group, you’d likely think that he’d lost his mind. After all, why would someone of one disability want to engage in activities exclusive to those who have other disabilities?

Why not, I ask? I mean, sure, I understand that there are intimacies of certain disabilities that are only truly understood among those sharing the precise condition. Yet, in the larger scheme, we’re all living under the umbrella of “disability experience” – so, why should “diagnosis” matter when we define who’s qualified to attend disability-specific events?

Oddly, many with disabilities will tell you that I’m wrong, that there are dramatic differences among those with disabilities solely based on “diagnosis,” where they believe that there are clear distinctions between, say, one with a spinal cord injury and a one with muscular dystrophy. Yet, again, I say not so fast.

The fact is, in the world at large, disability is a universal term that applies to all of us with physically limiting conditions, regardless of literal diagnosis. If you lined me up with a person with muscular dystrophy, one with spinal cord injury, one with dwarfism, and one with multiple sclerosis, and asked an average person from Main Street America what was distinct about our group, he or she would likely note that we each have a disability. And, that’s arguably how we’re seen at large – not remarkably distinct by diagnosis, but simply viewed as physically disabled. In fact, I can’t count how many times a stranger has asked me if I had muscular dystrophy, multiple sclerosis, or any number of disabilities beyond the condition of cerebral palsy that I have. Again, many in the mainstream recognize physical disability, but have no discretion toward specific diagnoses of disabilities – that is, they see little distinction from one “disability” to the next.

Yet, as those with disabilities, we often categorize ourselves as distinct from each other based entirely on diagnosis. We have our own subgroups, and, for the most part, draw social, political, and charitable boundaries around them. Those with spinal cord injury don’t attend little people conventions; those with cerebral palsy don’t attend muscular dystrophy camps; and, the visually impaired don’t attend multiple sclerosis walks. For many of us with disabilities, we hang out with our “own kind,” only support the charity organization for our own diagnosis, and we don’t pay much attention to the progress or research concerning other conditions.

However, from a practical perspective, the fact that we create these boundaries doesn’t make sense. Fractioning ourselves by diagnosis actually diminishes our power to bring change within the mainstream for all with disabilities. For example, it’s fantastic when 10,000 people march on Washington in support of themselves and loved ones with multiple sclerosis, but think of how much more of an impact would be made if people with muscular dystrophy, cerebral palsy, spinal cord injury, visual impairment, dwarfism, and on and on, showed up in support of multiple sclerosis as a cause, too – it would be epic. And, what if all disability causes supported all other disability causes, as well – it would change the social-political climate for those with disabilities in a heartbeat, making us an equivalent force to the AARP, per se.

To use a metaphor, it would be wise for individual farmers in a region to fight to save their individual farms, with each farmer lobbying for his or her own needs. However, if all farmers united as a single body to save farming in the region as a whole, they’d have a lot more socio-political power. Those of with us with disabilities need to see beyond our individual farms, and recognize that the plight of our neighbors is equal to our own, and by joining them, we find strength in numbers.

As one with cerebral palsy, I whole-heartedly support the Muscular Dystrophy Association, and at a recent fund raising ball, I was touched by how many people with disabilities other than muscular dystrophy were both in attendance and donating to the cause, as well. But, one particular gentleman with a spinal cord injury in attendance recognized my cerebral palsy, and questioned me. During the event, they publicly recognized contributors, and he saw that I sponsored a camper to attend MDA Summer Camp. Out of clear curiosity, he asked me why I would sponsor a child with a disability different than my own? My answer seemed common sense to me: “I don’t care about diagnoses; rather, I care about those with disabilities,” I explained to him. “I had a blast at summer camp as a kid, and I trust that the same holds true for kids with disabilities nowadays. So, it’s not a cerebral palsy or muscular dystrophy thing to me. It’s simply a kid thing.”

And, that’s an empowering realization: As those with disabilities, we aren’t ultimately divided as subgroups, but united as one, with remarkably common experience. When we encounter others with disability, we should care less about his or her precise diagnosis, and instead focus on the fact that we’re in this realm called disability together – recognizing a unity between us, where we’re all ultimately of one community, of one common experience. I say, let us possess the presence of mind to support each other as people, not diagnoses.

Flicking The What-If? Switch

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.

Mobility Empathy

By Mark E. Smith

I asked a buddy of mine how he like his accessible van dealer, and he gave me an unforgettable answer: “They remind me of my wheelchair dealer. Every time I go to either one, even though they’re surrounded by equipment needing immediate service, it’s like they’re just sitting around playing cards on a Tuesday afternoon.”

While there are many terrific mobility providers, my buddy is on to a reality about some providers that runs deeper than most realize. After all, one would think that with wheelchairs so critical to consumers’ lives, providers would scramble to get each job done as quickly as possible. So, then why do some providers seem so sluggish – that is, seemingly playing cards on a Tuesday afternoon while you’re stuck in bed waiting for your wheelchair?

For those types of providers, the answer is quite blunt: They simply don’t recognize the critical role of wheelchairs in our lives. See, I don’t think that sluggish providers merely lack professionalism. Rather, I believe that sluggish providers lack a far more crucial trait: Empathy.

As one who’s used a wheelchair my entirely life, nothing has proven more alarming to me than when my wheelchair has failed – that is, whenever it wouldn’t turn on, or an error code appeared, or the batteries suddenly died. The realization that my life had just come to a halt, that I was entirely helpless, and that my independence was gone always ushered in my most disconcerting emotions. For those who don’t have a disability, I explain the feeling of a suddenly-dead wheelchair as like that of being in the middle of a Nevada desert, countless miles from a town, on an unpopulated road, in 110-degree heat, with no cell phone, and your car simply dies in its tracks – now what do you do?

I didn’t grow-up in the greatest of families, where I experienced and dealt with some very harrowing experiences. But, none ever placed the sick feeling in my stomach like when my wheelchair simply stopped working. Why is it that I could handle a volatile home life with seeming nerves of steel, but the minute that my wheelchair wouldn’t turn on, my heart raced and I felt alarmed?

Because the entirety of my life has depended upon my mobility – it’s that simple. Even as an adolescent, I knew that as long as I could move via my wheelchair, I could handle anything. If Mom was having one of “those kinds of nights,” I could roll to the phone and call for help. If I needed to get to the store to buy my little sister and me food, I could do it. And, most importantly, I could get myself to high school each morning, no matter what went on at home. As long as my power wheelchair worked, I had control in my life.

However, the minute that my wheelchair died, I was helpless and vulnerable. My sense of control was gone, all abilities lost. I felt my pulse quicken, the blood seemingly rush from my head, thinking to myself, Please, Lord, not now….

And, I can never forget that feeling, never shake it. I can’t help but wonder, then, if the career path that I chose in working with mobility products – and, more importantly, toward serving my fellow users – had something to do with my subconsciously wishing to control the one aspect of my life that I never felt completely in control of: My mobility?

Of course it did. In fact, in not only wanting to avoid feeling that raw pit in my stomach for myself by preventing my own mobility issues, I’ve built a life that strives toward ideally helping others avoid that feeling. I take it personally when I learn of anyone, anywhere, with any wheelchair that has an issue. In fact, the pit in my stomach is rawer than ever, where I feel my gut wrench every time I see a message board post, receive an email, or get a phone call that someone’s wheelchair isn’t working, where I recognize that one’s life may have just come to a screeching halt without mobility – and it resonates within me, where I just want to help. I suppose that my experience is a lot like the fact that recovered drug addicts make the best recovery counselors because they see themselves in their clients, knowing their struggles first hand, with absolute empathy for what others are experiencing.

And, that’s what I think some providers lack – that is, the empathetic reaction to mobility issues that’s needed to truly pour oneself into one’s work. Sure, some providers are terrific, while others are downright terrible. But, there are some in-between who aren’t bad people, they just don’t get it – they don’t recognize that one’s life can come to a halt when one’s wheelchair isn’t working – and it hurts their business and harms consumers.

What can a consumer do, though, to help a provider have some semblance of empathy? In my experience, simply trying to make a real connection with such providers – saying, I’m going to be stuck in bed until you get my chair fixed. I’m sure you can imagine what it would be like to be stuck in bed for a week, so I trust you’ll do whatever you can to get my chair back to me in a day or two… – is worth a try. Providers don’t always register the importance of a wheelchair in one’s life, but sometimes when we sincerely, patiently try to explain it to them, it works wonders.

No, one doesn’t have to have a disability or first-hand knowledge of what it’s like to be stranded by a dead wheelchair to be a great provider. However, having empathy – as in realizing how one would feel if stranded in the Nevada desert by a broken-down car – certainly wouldn’t hurt. See, empathy doesn’t have to come from an identical experience; rather, empathy comes from simply appreciating the plight of others, and sincerely striving to be of assistance.

Being There

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.

186,880 Hours… and Counting

By Mark E. Smith

At this writing, it’s the week of my 38th birthday, also marking 32 years of my using a power wheelchair (though, not the exact same one, as that would be downright weird considering that my career is in wheelchair design and manufacturing – it would be like Apple’s Steve Jobs using a Sony Walkman from 1982 instead of the iPod that his company invented).

32 years of power wheelchairs – think about that for a moment. That’s 11,680 days that I’ve spent in a power wheelchair, or approximately 186,880 hours – the literal equivalent of 16 hours per day, 7 days per week, for 32 years. Yet, when I maneuver through a restaurant, people still comment how well I “drive that thing.” After, 186,880 hours of practice, one would hope that I can maneuver past a freakin’ table and chairs without smashing Bubba into the buffet.

In fact, after 11,680 days of power wheelchair use, one would assume that by now I can operate it blindfolded – not only through my house, but for blocks at a time. To the amusement of my friends, I’ve actually done it, too – a Chris Angel mind trick, where I forewent illusion and safety for luck and stupidity.

But, it took me a long time to get to where I could not only operate my power wheelchair blindfolded, but also simply keep it upright. In the 1970s, before engineers understood fiber optics or cellular technology, power wheelchair engineers apparently didn’t understand gravity, where they made power wheelchairs that were dangerously unstable outdoors, tipping over in the slightest breeze. So, like learning to kayak, I reckon that I spent my first 23,360 hours learning to simply keep my power wheelchair upright. At some point my mother should have put a “This-side-up!” decal on my wheelchair, so passerbys knew to pick me up. Still, the beauty of the industry back then was that they didn’t make true child-sized wheelchairs, so when I tipped over, I was surrounded by the finest, over-sized adult wheelchair – I was like an egg in the center of a gigantic suitcase, sliding side to side, without breaking. Humpty Dumpty had nothing on me.

And, in those days, I inadvertently found my first soap-box speaking platform, too – by sitting on it. There was no such thing as “pan” rehab seating – only vinyl slings – so if you needed custom seating, the therapists went Fred Flintstones on your butt, and built the finest, rock-hard, plywood seat insert that money could buy. After all, why rely on soft foams and rehab technologists when there’s a sawmill and woodwright around the bend?

Of course, reliability was a given – as in, there was none. I suspect that each power wheelchair was manually pushed off of the assembly line, as actually running it would have cut too much into the motors’ life span. And, then there were the parts that were so poor that they must have been made in a plastic spoon factory, right next to the plastic knives that always break. In fact, when you bought a new power wheelchair, you had to buy aftermarket “Davis Forks” to replace the Dixie-Cup cardboard ones that came on the power wheelchair. I suspect that the standard-issue, flimsy forks that broke upon first use were a practical joke gone too far – after all, there’s nothing funnier than seeing a little kid with cerebral palsy tip over in his wheelchair when the front wheels fall off; but, when, as a manufacturer, you do it to every wheelchair user in the country for years, the humor eventually wears off, even for Jerry Lewis, I suppose.

But, make no mistake, power wheelchairs have made my life. I was able to be one of the first severally disabled students mainstreamed in a public school because of a power wheelchair – sure, the teachers and other kids were a initially a bit freaked out by my wheelchair, but it got me around, mobile within in the public education system, ultimately to where they then couldn’t kick me out even when they tried out of sheer discrimination. As long as I could get myself to class, they couldn’t stop me from attending – they didn’t count on my power wheelchair as my secret weapon!

I’ve been to the top of Yosemite’s Glacier Point, and to Maui’s Black Sand Beach, both while using a power wheelchair. In other highs and lows, I met my true love while using a power wheelchair; then she dumped me while I used a power wheelchair; then lots of other chicks dumped me while I used a power wheelchair; and, then my true love eventually married me while I used a power wheelchair.

I met the President of the United States, senators, congressmen, and celebrities while using a power wheelchair; I graduated college with two degrees while using a power wheelchair; I authored books, appeared on television, and have raised my daughter – all while using a power wheelchair.

I’ve been hired – but never fired! – while using a power wheelchair. And, yes, I’ve even made whoopee while using a power wheelchair (actually, that’s a complete lie, but you know that you were wondering!).

And, that’s what makes power wheelchairs simply amazing to me: The life-building liberation that they provide. When I think of the unbridled empowerment that my power wheelchair has afforded me for the past 32 years – education, career, family, and success – I can’t fathom another device that I would have rather spent 186,880 hours using. It’s all taught me that the moment that one truly realizes that a wheelchair isn’t about confinement but is about liberation, a world of opportunity opens up, where one’s life is no longer centered around disability, but is about parenting and employment, black sand beaches and sunset strolls, if you wish.

Now, despite my successes, I’m sure that some might still look at my life – my severe cerebral palsy, my power wheelchair – and think to themselves, “I can’t imagine having to live in a power wheelchair for 32 years….”

And for them, I have a very simple reply: I can’t imagine living without one.

Elevators of Expectations

By Mark E. Smith

What would most call a 25-year-old who never went to college or worked, and is entirely supported by his parents, living at home, playing video games all day and night?

A slacker or loser might be the most common labels.

Or, what would most call a 33-year-old who doesn’t work, but pops prescription pain pills, smokes pot, and drinks around the clock, living in a filthy apartment?

An addict or junkie might be the most common labels.

Now, let me add in a single fact about these two individuals, and see if your perceptions change. What if the 25-year-old who never went to college or worked, and is entirely supported by his parents, living at home, playing video games all day and night, has severe cerebral palsy? Do you think anyone would dare call him a slacker or loser?

Or, what if the 33-year-old who doesn’t work, but pops prescription pain pills, smokes pot, and drinks around the clock, living in a filthy apartment, was a veteran, paralyzed while serving in Iraq? Would anyone dare to call him an addict or a junkie?

The answer in both these cases is, absolutely not. In fact, the opposite is true: Most people would call the guy with cerebral palsy an inspiration, while calling the paralyzed veteran a hero.

How is it, though, that disability unto itself changes peoples’ perceptions so radically, that a seeming loser becomes an inspiration, and a seeming junkie becomes a hero?

In a few words, a lack of societal expectations toward those with disabilities. The fact is, as far as we’ve come toward disability awareness and acceptance, the mainstream still has low expectations of us, they let us slide, they make excuses for us. And, worst yet, they often enable our poor behavior with positive reinforcement:

Isn’t great how his parents take care of him, cerebral palsy and all – that must be tough. But, look how happy he is, always smiling and playing video games. That family is a real inspiration.

Man, could you imagine going to Iraq to serve your country, then coming back in a wheelchair? But, look at him, just living life, drinking at the bar like everyone else. That guy’s a true hero.

In these ways, many with disabilities not only find themselves surrounded by lowered expectations, but are actually praised for poor behavior. It’s very much the same dynamic that fallen celebrities encounter, where even when they’re at their very lowest points in life – addicted to drugs, broke, unemployed – enablers around them still convince them that they’re stars and that their behavior is somehow acceptable.

So, the question then becomes, how does one with a disability escape the trap of “disability enablers” and the lowered expectations that all but encourage no accountability?

By immediately recognizing that the voices that one’s been listening to can’t be trusted, period.

When one is a 25-year-old with cerebral palsy who never went to college or worked, and is entirely supported by his parents, living at home, playing video games all day and night, a fire alarm should be going off in his head, screaming that dire changes are needed quickly. Mommy, Daddy, and the rest of society have been flat-out lying, preventing his success simply based on low disability expectations – and he must stick up for his own integrity because obviously no one else has.

Similarly, when one is a 33-year-old paralyzed veteran who doesn’t work, but pops prescription pain pills, smokes pot, and drinks around the clock, he needs to realize that those patting him on the back, calling him a hero, can’t be trusted – they’re not placing any appropriate expectations on him, just indirectly fueling the dangerous fire burning within. Every yahoo in a bar will buy him a drink, calling him a hero, but none will look at him slumped over the table at the end of the night and say, “Dude, your life is a freakin’ wreck – you need to get your act together.” He needs to realize that, with the same vigor that he defended his country, he must now defend himself – that is, fight for his own emotional health and sobriety because no one else likely will.

As blunt as it is, those of us with disabilities need to recognize that being an uneducated, unemployed, 25-year-old with cerebral palsy, living with Mommy and Daddy isn’t an inspiration, he’s a slacker, on par with any other 25-year-old do-nothing. And, a 33-year-old veteran who returns from Iraq, paralyzed, only to bounce from day to day on prescription drugs, pot, and alcohol needs to recognize that he isn’t a hero, he’s an addict, on par with any other addict. And, contrary to what one’s family, friends, or society may say, we need to recognize that disability – no matter its origin or extent – is never an excuse for poor, self-defeating behavior.

Now, surely my words may seem harsh to some – specifically, to those with low expectations of those with disabilities – but, my principles derive from absolute merit, or, more aptly, universal expectations. See, in the truest sense of equality, disability is a part of who we are, but it’s not an excuse for what we are. We, nor anyone else, should factor in disability as a limit to our personal responsibility or accountability. Let me make this very clear: Anyone who thinks that not going to school or work because of disability makes one inspiring, or thinks that living as an addict because of one’s injury qualifies one as a hero, has not only been tricked by society’s low expectations, but is also fooling oneself – a slacker, addict, or chump is no way to live, regardless of disability.

Some might also argue that I’m over simplifying disability experience by placing the same expectations on those with disabilities that are placed on those without disabilities. After all, isn’t it an exponentially tougher plight for one with cerebral palsy to go to college and get a job than others, or isn’t it devastating to return as a severely-injured veteran?

Yes and yes. But, they’re not reasons or excuses to live in defeat, ever. It wasn’t a piece of cake when I went through college – but I had expectations, and did it. And, it hasn’t been easy for an acquaintance of mine who was paralyzed in Iraq, spending several years now in counseling, getting his head straight, clean and sober – but he’s lived up to his expectations as a father and husband. See, that’s the magic of expectations – the minute that you have them, you automatically find personal accountability, and at that point, virtually any challenge is accomplishable.

If you are a loved-one or friend of someone with a disability, place only the highest of expectations upon them. Don’t fail the one you care about by viewing his or her disability as an excuse; rather, elevate your expectations of him or her, and assist toward finding solutions for his or her education, employment, housing, mental health, and sobriety. Be an elevator of expectations, not an enabler of dysfunction.

And, for all of us with disabilities, we need to disregard the voices of those who bestow us with the patronizing, self-defeating labels of inspirations and heroes, get our heads on straight, and start doing what’s right: Living as accountable, responsible, self-motivated adults who don’t buy into disability as an overall get-by-for-free card. Then, in time, when others label us as inspirational or as a hero, maybe we’ll humbly resemble one: Educated, employed, sober, successful, taking care of our families, and giving back to our communities – those are the traits that make people real, everyday inspirations and heroes.

Only When You Can Afford It

By Mark E. Smith

As a volunteer credit counselor, I routinely work with people who are $50,000, $60,000, and $70,000 in debt, while earning take-home pay of $30,000 to $40,000 per year. Any debt notably detracts from one’s life, but what I’ve witnessed is that when it’s as much as twice one’s annual income, it’s financially devastating at best, emotionally devastating at worst, where it eventually destroys families, from the loss of a home to causing a divorce.

What’s intriguing is that when I initially meet with those in debt, they always strive to justify their debt: I needed a new car to get to work…. We didn’t want to pull our kids out of the school district, so we held onto that house we couldn’t afford…. I had to take out loans to get through college…. My ex-spouse was a shopaholic…. I had to use my personal credit to keep my ailing business afloat…. And on, and on, and on, where they always end with the same statement: If I just had more money, and bad things didn’t happen to me, I wouldn’t be in this mess….

In my counseling role, I take a fairly tough-love position to begin: Lack of income and unavoidable circumstance are usually only about 20% of the factors toward racking up large amounts of debt, while 80% of debt is usually tied directly to behavior, whether it’s someone simply not paying attention to finances, making impulsive decisions, or flat-out irresponsibility. After all, buying a $30,000 car when you only make $35,000 per year, or buying a house with a payment that’s 50% of your monthly take home pay, then living on credit cards to cover the monthly cash-flow shortage, aren’t based on poor finances – they’re based on poor decisions and impulsive, irresponsible behavior. The biggest factors that credit counselors address, then, are more behavioral than financial, where the start of the solution becomes: Are you ready to start taking control of not only your finances, but also your entire life?

For those ready to change their ways, we work through a 9-step plan, which takes disciplined behavior, but is financially summarized in one sentence: Living within your means. Through the national organization that I work with, the average family that lives by our common-sense steps is out of debt within 2-1/2 years, has 6-months of savings in the bank, they’re putting away money for their children’s college and their own retirement, and they have money left over to tithe to church or charity – that is, they’re not only debt-free, but also prospering and giving to others. Most importantly, they’ve transformed themselves from feeling like victims of debt to living as victors of their finances – they’ve found control and peace in their lives.

Interestingly, I run into the overlapping theme of debt in the disability world, as well, where many of our peers are heavily in debt. Make no mistake, disability can be costly – from staggering medical bills to outrageous equipment prices. However, there’s still a line that we must draw, where we must assume accountability for our actions, and live a responsible financial life, regardless of how taxing disability proves.

When we talk about debt and disability, it’s most often linked to “necessity,” as in needing some sort of equipment or service relating to disability, usually at great expense. But, what we must ask ourselves is, do I really need to take on debt, or am I merely justifying a poor financial decision in the name of disability necessity?

A great example of using disability to justify debt is seen in how quick many are to take out huge loans on accessible vans – again, all in the name of necessity. A $750 per month auto payment would be viewed as extremely irresponsible for the average family in America making $48,000 per year – it’s Mercedes money on a used-Chrysler budget. However, it’s not unusual for those with disabilities to pay $750 per month – often on “fixed incomes” – for a fully-accessible van, justifying it as a “necessity.” What’s more, because accessible vans can be so expensive, and fixed incomes so low, 10-year financing is increasingly used (which is all but unheard of in traditional auto lending because it’s a financial disaster for consumers), but it’s again justified out of “necessity” for those with disabilities. In fact, I’ve talked to many consumers with disabilities who are paying half of their monthly income toward an accessible van – buried in debt for years and years to come, with zero money left in their accounts by the end of each month.

Similarly, I meet many consumers with disabilities willing to assume debt to buy the latest-greatest wheelchair via a bank loan or credit cards out of “necessity,” even though they already have a perfectly good wheelchair. Still, others take out home equity loans to make their homes more accessible, though they’ve gotten by thus far. And, yet others go to the tipping point, wracking up debt on completely over-the-top items like ATVs – again, all out of “necessity.” A gentleman recently told me, “You can’t put a price on any type of convenience when you’re stuck in a wheelchair.”

However, you can put a price on debt – from overwhelming stress to financial ruin – and, at what point do we assume accountability, and stop using disability and “necessity” as justifications for having debilitating debt in our lives?

From my perspective, the answer is entirely clear-cut: Immediately. Debt shouldn’t be considered as an acceptable option for those of us with disability, ever.

Now, I’m not suggesting that we can always help “incurring” debt, as with unpreventable medical bills. However, we should never “choose” debt, as with a van purchase. In fact, assuming debt to buy an accessible van is the prime example of how we need to change our thinking from viewing debt as being a “necessity” of disability, to recognizing debt as a burden that slowly unravels our lives.

None of this is to say that there’s not a way for some to try to justify debts like a van loan – but, they’re ultimately specious arguments, sounding right while proving wrong. For instance, a seemingly logical thought process is that in order to transport someone with a complex disability, in a power wheelchair, an accessible van is needed. New accessible vans cost between $40,000 and $50,000, so to afford such a costly, needed vehicle, most people must take out a loan. Therefore, a van seems like a rightful debt out of necessity – that is, if you need an accessible van, but don’t have $45,000 in the bank, then you have no choice but to take out a loan.

However, why is it in any way acceptable for someone living on, say, $2,000 per month in disability benefits to pay $750 per month, for 7 years, for an accessible van? Where’s it written in the rule book of life that while it’s incomprehensible for an able-bodied household making $2,000 per month to have a $750 Mercedes payment, it’s justifiable for a household of someone with a disability?

It’s not. The literal financial rule – regardless if you have a disability – is that the value of one’s vehicle should not exceed half of one’s annual income, so unless one earns $90,000 per year, a $45,000 wheelchair van should be out of the question. And, if one on a limited or fixed income borrows to buy such a van, it will typically prove a haunting financial decision for years – one will likely never get out of the financial hole, and statistically risks the vehicle in the end (repossessed accessible vans are not uncommon).

The question then becomes, with wheelchair vans so expensive, and the incomes of those with disabilities often lower than those in the mainstream, how does one ever get an accessible van without going into debt unless one is fortunate to have cash on-hand?

With creativity whenever possible, sacrifice when needed, or never in some cases – that’s how.

For veterans, college students, and those who are employed, there are grants available for accessible vans, ranging from the Veterans Administration to state Vocational Rehabilitation. For those with incomes, but who don’t qualify for grants, there’s a large used market of more-affordable accessible vans, which are a much wiser cash investment than taking on long-term debt for a new van. Of course, reaching out to the community for donations, as long as one has helped others along the way, is yet another way to raise funds for an accessible van. And, lastly, the fact is, if one doesn’t have the financial means to buy a van without taking out an irresponsible loan, then one shouldn’t buy a van, period – paratransit and buses serve millions well, and are a transportation solution.

Some will continue to argue that debt is necessary toward an accessible van because while anyone without a disability can drive a $1,000 beater car, it’s impossible for one to find a reliable, super-inexpensive accessible van. But, again, it’s a specious argument – it sounds valid, but it’s not. Lots of responsible, accountable low-income families don’t have cars because they can’t afford one, where they take the bus as needed – and the same standard applies to those with disabilities: If you can’t afford a vehicle, you don’t buy one.

Still, many with disabilities state that quality-of-life outweighs concerns toward debt no matter the financial and ethical considerations that suggest negative outcomes. Some argue that taking out a loan for a new accessible van, wheelchair, home renovation, or ATV is entirely justifiable, that “necessity from disability” dictates an entitlement to debt, as in, I can’t get my power wheelchair into my spouse’s $6,000 car, so it’s OK if I take out a $45,000 loan for an accessible van. However, how does having a disability ever make debt any better than for those without disabilities? Or, more aptly, who has ever ultimately felt good about being in debt in the long-term, with or without disability?

No one in his or her right mind. It may feel great having that shiny new van in the immediate, but two or three years down the road, when you’re still saddled with a $750 per month loan payment, with no end in sight, how do you suppose that feels? Worse yet, how do you suppose it feels when you or your spouse lose a job, or other catastrophes hit your family, and you still have a van payment to cover? Or, even worse yet, if you have a progressive disability, how do you suppose it would feel to leave your family with a mountain of debt – the van, the home renovations – at your passing?

And, that’s the crux of debt: Its stresses, negative affects, and consequences don’t discriminate or offer leniency because one has a disability – one merely needs to turn on the nightly news to see how the destructive nature of debt doesn’t draw lines based on age, race, gender, status, or abilities. What’s more, the fact is, disability can be hard and unpredictable on its own – and adding debt to the equation simply makes life exponentially tougher and more risky in the long-term. In this way, it’s our obligation as accountable, responsible adults with disabilities to not justify debt, but to avoid it, period – we owe such accountability to society, our families, and ourselves.

I don’t know your personal story, but if you’re already in debt, buckle down and start making changes – don’t merely accept your debt as the status quo or feel powerless to pay it off. Start by making bold lifestyle changes, vowing to never use credit again; then, focus on paying off your debts, smallest to largest, having the self-discipline to make sacrifices along the way: Cut-off the cable TV, sell the Xbox, live on Mac ‘n’ Cheese, earn extra income wherever you can, and prove to yourself and your family that you’re adult enough to vow, Regardless of my disability, I got myself into this mess, and now I’m assuming responsibility to get myself out of it, with old-fashioned hard work, ethics, and sacrifice.

If you’re not already in debt, but are pondering if a loan for a van or home renovation will make your life easier, remember this golden rule: Assuming debt is an effortless decision in the immediate that usually takes a cruel turn, burdening your life in the long-term. However, while forgoing debt in the immediate often requires personal sacrifice, it all but guarantees that your lifestyle will be more secure and peaceful in the long-term. Don’t burden yourself or your family with debt and shortsighted thinking; rather, understand the consequences of debt – undue stress, financial risk, and a lower quality of life – and have the foresight to get creative, make sacrifices, and forgo any so-called disability “necessities” that you simply can’t afford, all in a wise effort to live a secure, peaceful, debt-free life.

Disability and debt – many assume that they go together. But, math and everyday life prove otherwise. The fundamental rule is that if you can’t pay cash for something, then you truly can’t afford it – and there’s no harm or shame in not owning what you can’t afford – you’re just proving your financial wisdom. However, when you get to where you can afford to pay cash for something, then you’re making headway in life because not only do you then own what you wish, but you never have payments or risk, where all future income remains your own – that’s financial peace and empowerment. Rid your life of debt, and your life won’t just improve in peace-of-mind, but it will afford you the opportunity to truly prosper, where you’ll set yourself on the right track to thrive in the long-term, disability, finances, and all.