PowerchairDiaries

Your Own Plate

By Mark E. Smith

It seems like a never-ending debate in disability culture: Which forms of disabilities prove “easier” or “harder” to cope with, life-long or later-in-life, static or progressive? For example, I’ve heard some who received later-in-life, progressive disabilities say that those with life-long disabilities have had the opportunity of experiencing disability their entire lives, making it an “easier” experience. Then, I’ve heard those with life-long disabilities suggesting that those with later-in-life disabilities have had it “easier” in that they at least had the opportunity to experience an unencumbered life for some time, as in growing up without disability.

From my perspective, the debate on both sides is absolutely ludicrous – maybe even macabre? After all, what it really implies is that one origin of disability is more preferable than another, which begs the question of, how does anyone rationally come to such conclusions that one disability experience is intrinsically “better” or “worse” than another based on diagnosis or duration of disability, and how does forming such conclusions help one’s own disability experience?

To put this question in even more dramatic terms, how does a person decide whether it’s “easier” for one to go through one’s teen years with profound cerebral palsy, or go through one’s 40s with progressing multiple sclerosis, for example?

Of course, no healthy, understanding person could make such a choice, as both paths can prove emotionally harrowing. However, people do, in fact, rationalize that there’s a clear winner – that is, they justify in their own minds that one disability experience, based on diagnosis and duration, is somehow a universally “easier” or “harder” experience than another. But, how on Earth could anyone come to such a blanket conclusion?

The answer is, because coming to such a conclusion – that one disability experience is somehow universally “easier” or “harder” than another – is entirely self-serving, both in positive and negative ways.

Toward the seemingly positive – and, I note “seemingly positive” because this perspective can be based in pity, as well, which is really a negative – some find greater comfort in their own disability experience by believing that they are more fortunate than others, where they perceive others as having an inherently rougher plight based on diagnosis and duration of disability. I’ve heard people say, “I may have M.S., but I can feel for those who’ve had life-long disability. At least I lived much of my life able-bodied.”

Conversely, some negatively rank their own disabilities against others’ to create an explanation for feeling defeated by disability. “Oh, sure, others have a positive attitude toward disability, but they’ve lived their whole lives with disability – they don’t know how hard it is for someone like me going through it in my 40s,” I’ve heard.

At some point, though, if we’re going to succeed with disability, we need to get honest with ourselves and realize that defeat or success with disability isn’t about any single diagnosis or origin, but about our individual abilities to cope with all of life’s challenges, moving our lives forward no matter what life presents. Of course, based on our backgrounds and how mindful we are toward our present lives, some people are more adept than others at coping with life’s challenges as a whole, regardless of disability. In this way, we react to life’s challenges based on who we are as individuals, not based on who we are as disabilities, and we have an obligation to recognize others – and ourselves – beyond diagnosis or duration of disability when it comes to coping skills.

In my own experience, I’ve known people with life-long, static disabilities who have lived lives of defeat, never coming to terms with disability; however, I’ve also known those in that situation who have lived lives of enormous optimism and success. By parallel, I’ve known those who’ve received later-in-life, progressive disabilities who have experienced nothing more than sorrow and grief; however, I’ve also known those in that situation who have been elevated with purpose and hope. Reactions to disability are, then, based on the entirety of the individuals encountering them, not universally defined by diagnosis or duration of disability.

Still, some remain focused on using others’ diagnoses and durations of disability as a way to gauge their own plights. “Sure, that woman who’s a double leg amputee has a terrific career, she’s not a quad like me,” one might justify. Yet, in the most literal sense, others’ diagnoses or duration of disabilities truly have no consequence toward our own, so it’s pointless to rank our own disabilities by comparison to others’ regarding how we should cope with them. As I would tell my daughter, it doesn’t matter what the other kids in the cafeteria are eating for lunch – some mothers pack cupcakes, and others pack spinach for their kids – you still need to eat what’s on your own plate.

Now, some might ask, “Mark, doesn’t denying that some disabilities are a universally tougher plight than others demonstrate a complete lack of empathy?”

Not in the least. In fact, not making presumptions toward one’s ability to cope with adversity or succeed based on diagnosis or duration of disability recognizes everyone’s plight with an equal degree of respect and expectation. Sure, some disabilities are more physically impacting than others; however, we shouldn’t assume that as a gauge to predetermine one’s overall outlook toward life, neither toward the positive or the negative. Instead, we have an obligation to see all individuals as people – including ourselves – not merely as diagnoses, recognizing that we all have a remarkable capacity for resilience and growth, just as we can elect defeat, where we ultimately have the ability to define the foremost directions of our lives, regardless if it’s on two legs, using a wheelchair, or relying on a ventilator. After all, while we can’t control our disabilities, we can control how we live with them.

In my own life, I’m very fortunate to find inspiration in many successful people who dedicate themselves to the spirit of life, committed to family, career, and community. And, many of my successful friends have disabilities, some life-long while others are later-in-life, some static while others are progressive. Two such friends are one who happens to have life-long osteogenesis imperfecta, and works in management in Silicon Valley, while another has progressing multiple sclerosis, working as an English professor at a university in Florida. Both of these friends have demonstrated to me that it doesn’t matter what my disability is, or when I received it – it’s a positive, resilient mindset and a passionate pursuit toward my goals that, above all else, defines my ability to live a successful, fulfilling life.

What I’ve learned is that defeat and success aren’t based on diagnosis or duration of disability – that is, one’s disability doesn’t intrinsically dictate misery or happiness, failure or accomplishment. Rather our abilities to face small and epic challenges alike in life are based on our practiced coping skills as people, just like those needed by everyone else when facing what most label adversity, disability-related or otherwise.

From this perspective, it becomes clear that it ultimately doesn’t matter how, when, or why any of us landed in this boat called Disability; what does matter is that if we’re going to succeed in life with disability, we must stop comparing the storms that landed us each here, and pick up an empowered oar to start rowing our own lives in the directions we wish – again, just like everyone else in pursuit of a rewarding, successful life.

How’s that Working for You?

By Mark E. Smith

How have you chosen to view your disability, and how’s that working for you?

This provocative question came to mind recently when I spoke with a family facing disability. The wife was in her 50s, with multiple sclerosis, and she shared with me that her progressive condition has single-handedly destroyed her life. “M.S. has robbed me,” she said. “And, life only gets worse every day. I have nothing to look forward to but more pain and anguish. For every new level of multiple sclerosis, there’s another devil in my life. The best is over for me.”

Now, most wouldn’t question the woman’s sentiments. After all, she most likely went from dreaming of a carefree retirement like most her age, to facing the daily challenges of living with progressive disability – that’s a tough tact in life to take.

Yet, as I found myself wondering, was her condition truly so devastating, can life truly be so bad?

Maybe, or maybe not. From my own life and career, I’ve learned that how disability impacts our lives is often subjective, based less on the physical realities of disability, and more influenced by our own perspectives. I’ve known those who let arguably minor limitations destroy their lives, and I’ve known those with profound disabilities who’ve achieved remarkable success. Personal perspective, it proves, is a decisive factor in living with disability: Do we see ourselves as victims or victors?

Along with the woman were her husband of thirty years, and their two college-age daughters – and they were among the most supportive family that I’ve ever met. The husband told me of remodeling their home to maximize his wife’s independence, and he told me how the daughters took turns coming over each day to help their mom with any personal care that she couldn’t accomplish any longer on her own, that many from their church happily helped drive her on errands and to appointments, that they were fortunate to have great health insurance, with access to the best specialist on the East Coast.

Still, every time that the husband spoke positively, the wife spoke negatively:

“The girls have been a tremendous blessing in facing these family challenges,” he said.

“It’s all the little aspects of M.S. that make me so angry, like not being able to tie my shoes,” she said.

“We’re lucky that our insurance is so good that we haven’t had to use our savings like others,” he said.

“If I have to see one more stupid doctor because of this disease, I’m going to choke someone,” she said.

“We’re taking each day as it comes, and trusting that whatever comes our way, we can handle it as a family,” he said.

“I just want to go back to the way things were before all of this,” she said.

In a world of victims and victors, clearly this family fit both roles, where the wife saddled herself with every burden of disability that she could fathom, while the rest of the family strove to move forward with levels of acceptance and optimism.

The context of my conversation with the family was one of acquaintance and brevity, so I wasn’t in a position to ask the most pertinent question to the wife: How’s holding on to resentment toward your disability – toward what you’ve seemingly lost – improving your life? How’s that working for you?

In fact, I had the chance to ask that very question of a friend of mine not too long ago. My friend was paralyzed at age 16 in an auto accident, and 20 years later, he explained to me one evening that not a day goes by when he doesn’t wish with all of his might to turn back the clock, to return to the moments before the accident, to change everything. He went on with great candor, explaining that he regrets being a father and a husband who uses a wheelchair, that he wants to be himself as he once was: Able-bodied.

“How’s that outlook working for you?” I asked.

“What outlook?” he asked.

“The one where you’re holding on so tightly to what you believe you’ve lost in the past, that you’re refusing to let yourself move forward and live entirely in the present,” I said. “How is regretting that you can’t walk bettering your life in the present as a father and husband?”

Of course, it’s a tough question to answer, but it’s a fundamental question for any of us struggling to move our lives forward with disability – that is, if we hold on to the past, focusing on what we’ve seemingly lost, how does that help us in the present?

It doesn’t. No one can say, “I swear to you, the more that I resent life and despise this body that’s betrayed me with disability, the better my life gets.” I mean, do we really think that the woman with multiple sclerosis is fostering her family’s emotional health in their challenging time with such a bleak outlook? Do we really think that my friend is being the best father and husband that he can be by clinging to the supposed regrets of what he could be if only he could walk?

Absolutely not. Such people who hold on to the past, who resent their disabilities, do little beyond sabotaging ever finding any successes and happiness in life. At some point, we must simply live in the present if we’re going to succeed, where we must sincerely play the hand we were dealt to the fullest, with a sense of purpose to our lives, rather than resentment. There’s nothing that we can change about the past, and holding on to it makes our lives futile. However, we certainly can control the present with our choices and perspectives, greatly dictating our own successes in life.

Interestingly, even the quest for a cure can serve as an empowering mindset when it comes to living with disabilities and accepting one’s situation. I know, it may seem like a contradiction, that anyone seeking a cure – medicinal or miraculous – isn’t accepting one’s situation, but is merely wishing for a way out. Yet, some of those seeking cures are among the most positive, inspired people who you’ll ever meet. After all, literally pursuing a cure through a therapy regimen or religious journey requires absolute optimism, practicing the belief that life will only improve through hard work and faith – that’s a powerful outlook. In fact, a very spiritual young man going through rehab due to a head injury shared with me his belief that “the Lord helps those who help themselves.” Regardless of one’s religious inclination, there’s absolute truth in the fact that our lives only improve when we help ourselves – and that requires a positive outlook.

Now, some say that it’s impossible not to resent disability, that it’s such a profound life change that no one can just get over it. And, they’re right to a point – disability is a major life change that takes time to address, understand, work-through, and accept. However, anyone refusing to move forward toward disability acceptance – read that, self-acceptance – is on a self-defeating course. Again, we don’t see successful people with disabilities – who have healthy relationships, rewarding careers, and empowered lives – who resent their disabilities. It’s quite clear that if one’s going to lead an all-encompassing, successful life with disability, one has to move beyond hopelessly clinging to resentment and bitterness, and assume personal responsibility for building a positive life path.

I have to wonder, wouldn’t it be terrific if the woman with multiple sclerosis, and my friend with a spinal cord injury, both found the perspective – took the responsibility – to turn a new page in their disability experience, to shake their self-imposed life sentences, pronouncing the affirmative that while disability happened to me, I’m going to also make life work for me? Wouldn’t it be wonderful if the woman demonstrated to her daughters that nothing is taken from us without enriching our lives in other areas, as with the kindness others have offered as a result of her multiple sclerosis? And, wouldn’t it be great if my friend with a spinal cord injury sought to be the best father and husband possible, irregardless of disability, by teaching his son that it’s not who we were, but who we are that’s important? And, wouldn’t it be great if each of us followed these simple principals, where we don’t let disability to defeat is, but we let it elevate us?

The fact is, disability isn’t what we chose, and it may not be easy. However, disability is what we have – and, if we’re going to succeed in life, we need to let go of what we’ve seemingly lost in our pasts, and get on with our lives, where disability doesn’t usher in the worst, but brings out our best. After, all, life doesn’t give us challenges so that we sink with our pasts; rather, life gives us opportunities so that we rise in our futures. And, for those of us who choose to work toward a victorious life with disability – fending off a victim mentality, maintaining positive perspectives – disability is an opportunity to not only elevate our own lives, but also to elevate the lives of others around us, where disability experience ultimately becomes a rewarding experience.

Ace in the Hole

By Mark E. Smith

I recently finished reading a new report on the state of those living with disabilities in America, funded by the United Cerebral Palsy Association. And, the portrait that the report paints of our lives is grim:

Those with disabilities are one-half as likely to have completed high school, and only one-third as likely to have a bachelor’s degree, as those without disabilities

In 2005, the median annual household income of working-age Americans was $61,500, whereas it was only $35,000 for households of working-age Americans with disabilities – a deficit of more than $26,000

Adults with disabilities are almost three times as likely to live in poverty as people without disabilities

62% of those with disabilities are unemployed

Only 7% of those with disabilities own their own home, compared to 69% of the general population

Indeed, reading the report’s statistics is disheartening. However, buried in the middle of the report, on page 43, I discovered a single, understated paragraph that voids virtually every grim statistic about living with disability in America, literally defining the key to success:

The good news is that students with disabilities who earn a bachelor’s degree find roughly the same success as their non-disabled labor market competitors. Baccalaureates with and without disabilities had generally comparable employment rates and salaries, and they enrolled in graduate school at similar rates, at least within the first year after earning a bachelor’s degree. Thus, clearly workers with disabilities can compete successfully in the labor market if they have a post-secondary education.

Think for a moment about the profoundness of that quote: The minute that we receive a bachelor’s degree, we even the playing field for those of us with disabilities among others in the job market. What’s more, what that really means is that the single accomplishment of a 4-year college degree not only allows us to find a job, but an equal-paying job, where we then are removed from poverty, where we can buy a home, where we have access to health care, where we escape virtually every grim statistic of those with disabilities living in America today. That’s a profound life lesson, an ace in the hole that breaks us free of many the barriers and hardships that can come from living with disability.

Make no mistake, I came to this realization myself years ago, simply by taking a quick inventory of my friends with disabilities, recognizing that those with disabilities who were educated achieved tremendous success in their careers, whereas those with disabilities who had no college education generally existed on SSI, living in poverty. In fact, in my book, Making the Most of It, I discuss the reality of disability as a sink-or-swim proposition for most, where we either excel or we struggle, with little middle ground in-between.

From this perspective, there’s truly no question of whether we, as those with disabilities, should pursue education: We must. No matter if one is 18 or 48, if one wishes to compete in the workforce – to escape poverty and all of the traps that it contains – a four-year degree, at minimum, is key.

Sure, one can tout all sorts of entrepreneurs in history who became tremendous successes without formal educations; one can assert that one doesn’t need a formal education to be a productive member of society; and, one can even claim that stating that everyone with a disability should have a college education is an elitist attitude. However, such statements don’t account for the reality of America today for those with disabilities: One needs a college education if one wishes to compete and succeed in the job market.

Fortunately, many with disabilities have remarkable opportunities to attend college, including financial incentives over many within the general population. Every state in the country has a vocational rehabilitation program intended to foster employment of those with disabilities, including paying college tuition in most cases. What’s more, vocational rehabilitation programs in many states also fund books, computers, and transportation, including purchasing adaptive vans, for those with disabilities attending college. And, those with disabilities in most states also qualify for educational grants and scholarships. Economically, it simply makes sense for those with disabilities to attend college, both in the immediate and the longterm.

Now, some may say that economics aren’t the only consideration for those with disabilities attending college, that disability, itself, can create obstacles. Absolutely. After all, imagine going through college with profound disability, where you’re unable to speak, with not enough coordination to write or even feed yourself, where you require full-time attendant care. But, people in such situations graduate college every year, going on to terrific careers – which proves that disability, in itself, is rarely a reason not to attend college. No, it may not be easy – and it can be a logistical nightmare for some – but one must do whatever it takes to get through college, where four years of struggles is repaid ten-fold, resulting in a lifetime of opportunity and success.

I know, I’m the disability dad who everyone loves to hate when it comes to when I was in college stories. I go off on tangents about how I started off with a single class at a community college, to ending up taking six classes per semester, attending extra courses during winter and summer breaks, working my way into among the best writing programs in the country. I tell how I commuted by public transportation hours each way to get to my bachelor’s program, where I was unable to use the bathroom for 15 hour stretches, where I fought pressure sores. And, I tell of getting to the point where I was urinating blood, where I had a pressure sore opening, where my doctor prescribed that I not finish one particular semester, that I check myself into the hospital immediately – to which I told him in no uncertain terms that I was fully prepared to die before I was going to stop going to classes. And, it’s all true. Sure, I was extreme in pursuing my education. However, I knew that as a twenty-something guy with cerebral palsy, I had no other choice but to go to college. That is, if I was to make it in the world, on an even playing field, I had to pursue my education no matter what it took – there was no other alternative for me as one with a disability.

In these ways, it’s clear that if we want to succeed in the workforce – and raise the bar socially, economically, and politically – those of us with disability must pursue formal educations. No, college isn’t easy for anyone with a disability, and for those with very profound physical disabilities, it can be even more challenging. Yet, again, a few years of hardships will all but guarantee a lifetime of opportunity and success – that is, college is unquestionably the best investment that we can make in our lifetimes.

If you’ve gone through college with a disability, assume the role of championing others with disabilities in their enrollment – express the importance of education to them, help them find support services, tutor them, or serve as their transportation to campus. Supporting others with disabilities who seek to better themselves through education is among the best effort that you can make toward elevating all of our lives as those with disabilities.

Of course, if you haven’t pursued formal education, now is the time to do it. In four years, you can still be exactly where you are today, or you can have remarkable momentum in life – that is, an education propelling you forward toward opportunity and success. No, attending college isn’t easy; however, considering the positive impact that it guarantees in your life, enrollment should be the easiest decision that you’ll ever make.

Road to Danger

By Mark E. Smith

I’ve been reading posts on the WheelchairJunkie message board by users asserting their rights to use their wheelchairs along the shoulders of roadways, as “pedestrians” – and it reads to me as a troubling argument, where based on pedestrian accident statistics and remaining social barriers of inaccessible sidewalks and transit systems, we should advocate getting wheelchair users off of roads, not on them.

Technically, throughout the U.S., a wheelchair user is a pedestrian, able to travel where pedestrians travel. For some, this includes traveling down the shoulders of roadways when sidewalks aren’t available. Of course, as experienced by some posters on the message board, ignorance remains toward disability and wheelchair use, where some with disabilities have expressed being stopped by the police for using their wheelchairs “in the street,” provoking the wish of some to seek legal protection so that they can continue using their wheelchairs along roadways when needed.

What’s occurred to me in reading the discussions is that while many wheelchair users are quick to tout their rights as pedestrians on roadways, none mention personal safety and responsibility, where just because one can or needs to use a wheelchair along roadways doesn’t mean that the activity is prudent.

The fact is, automobiles occupy the road, and the minute that a pedestrian ventures into the proximity of vehicular traffic, extreme awareness and caution must be taken. While a pedestrian may have every right of way, it still doesn’t discount the fact that pedestrians who use wheelchairs are regularly struck and killed by automobiles in this country, frequently reported in news stories.

According to the National Center for Statistics and Analysis, whenever pedestrians interact with roadways, there’s potential danger, to the toll of 1 pedestrian death every 108 minutes in the U.S. Additionally, the facts show that placing oneself outside of normal pedestrian patterns – such as outside of crosswalks – skyrockets the risk of an accident, with 75% of pedestrian-vehicle accidents occurring at non-intersections.

Interestingly, I’ve read wheelchair users stating that they travel on the shoulders of roadways even when there are accessible sidewalks because it’s safer, that the bumps and slopes of sidewalks can be dangerous. Statistically, nothing is farther from the truth. In 2001, while 4,461 pedestrians were killed on roadways, none were killed on sidewalks by roadway vehicles according to statistics. Sure, some who use wheelchairs say that a rough sidewalk could cause a wheelchair to tip, resulting in injury; however, such odds are so small that they’re a non-statistic, especially for a wheelchair-sidewalk related death. Put simply, pedestrians using wheelchairs on roadways are unquestionably at risk, but not so on sidewalks – that is, the safest place for a pedestrian, wheelchair or not, is on a sidewalk. (And, it’s illegal in most states for a pedestrian to travel along a roadway when a sidewalk is available.)

Similarly to using sidewalks, pedestrians dramatically increase safety by simply obeying intersection laws, crossing in crosswalks, namely when the light gives the pedestrian the right of way (again, 75% of all pedestrian fatalities occur at non-intersections, so crossing at controlled intersections dramatically increases safety). And, traveling during daylight hours also reduces the risk of pedestrian accidents, where 66% of pedestrian fatalities occur at night, between 6 pm and 6 am.

Still, some pedestrians who use wheelchairs have no choice but to travel down the shoulder of a road or cross at non-intersections, as there are no sidewalks or crossings, a disconcerting reality. Advocates blame this dangerous fact on poor infrastructure, with not enough governmental attention to sidewalks or accessible transportation. Yet, with 4 million miles of paved roads in the U.S., we will never have coast-to-coast sidewalks or transportation, where pedestrians will always have to interact with roadways at some point. In this way, it’s vital that, no matter the right of way, pedestrians who use wheelchairs lookout for themselves to the best of their abilities when interacting with roadways.

When one finds oneself in a situation where there’s no sidewalk, one should be smart about it, taking all necessary precautions to travel as safely as possible. One should stay as far as possible outside of the flow of traffic; one should wear blaze-colored safety clothing to dramatically call drivers’ attention; one should fly an orange flag to increase the wheelchair’s visibility; and, one should avoid inherently dangerous roads and situations altogether. Yes, a pedestrian may have the right of way; however, one should still take whatever steps possible to ensure one’s own safety above all else.

I write on this topic from great personal experience, having spent 31 years as a pedestrian using a wheelchair, including using my wheelchair to get back and forth to work till this very day – and I know the pitfalls and hazards, from no sidewalks to drivers running red lights. However, I’ve dedicated myself to not becoming a statistic, where I strive to take every precaution possible to stay safe. If there’s a sidewalk, I’m on it; and, if there’s a crosswalk, I use it. I wear a blaze-orange safety coat, and I fly a safety flag. And, I never assume for a second that being on the road is in my favor, even when I have the right of way. I know that the law does not ultimately prevent pedestrian accidents, it merely assigns liability, and I have no interest in being on the winning side of the law after being hit by a car; rather, my goal is to not get struck in th first place.

From these perspectives, fighting to allow pedestrians who use wheelchairs increased access to roadways truly defeats safety and accessibility. I agree that it’s unrealistic to assume that no one with a disability ever has to travel down the shoulder of a road out of necessity – the reality is that some have to, where there are no sidewalks, and they shouldn’t be hassled by the police if traveling with prudence. However, one’s recognizing necessity is a lot different than literally advocating wheelchair use on roadways for the sake of “personal liberty,” as suggested by some. As a result, what we really need to do is fight to keep wheelchair users off of roadways by advocating increased access to sidewalks and transportation, encouraging our peers to stay safe through logical channels, to not become the latest tragic news story.

Indeed, when there’s no sidewalk or accessible transportation on our local routes, let us not pursue the right to use our wheelchairs on dangerous roadways; but, instead, let us assert ourselves with City Hall that there needs to be more sidewalks and transit services to keep us safe and independent in our local communities. That is, as pedestrians who use wheelchairs, let us fight for safety through accessible sidewalks and transportation, not seek the skewed right to become roadway fatality statistics in the name of personal liberty.

It Gets You There

By Mark E. Smith

We’re heading toward the end of another school year, and college graduates across this great country are asking themselves the same question: I have my degree – now what do I do?

For some graduates, it’s a question of not knowing where to start on their career path, while others may know precisely what they want to achieve, needing to merely choose from several terrific opportunities. All graduates, however, share a common position at the moment of graduation: They possess the tools and promise needed to achieve a remarkable future if they pursue it.

Wheelchairs, likewise, serve as empowered tools of promise in our lives. A wheelchair acts as a key that can unlock one’s future, a vehicle that gives one access to opportunity, a rolling degree of sorts that affords one the ability to achieve a remarkable future if one wishes to pursue it.

And, yet, it forever amazes me that more people don’t realize the promise that their wheelchairs offer, that some choose to view their wheelchairs as reasons why they can’t pursue many aspects of life:

“I’m not even bothering to look for a job because I know that no one will hire someone who uses a wheelchair like me.”

“I could never join the church choir – my wheelchair would make me stick out too much.”

“I couldn’t imagine being a parent – I could never handle a baby from my wheelchair.”

These are the thoughts that some have. And, here’s a reality check: Such negative outlooks toward using a wheelchair are not only self-serving – after all, if one follows such thinking, one never has to make any effort in life – but, they’re also entirely self-defeating, preventing any opportunities for success.

What some don’t realize is that a wheelchair actually removes many of our limitations – and, ultimately, excuses – making us increasingly accountable for our successes and failures. And, that’s an empowering realization, in that a wheelchair fosters an undeniable sense of self-determination in our lives, that if we can dream it – and are willing to apply ourselves – our wheelchairs are prepared to take us as far as we seek.

Truly, a wheelchair remarkably removes the foremost obstacle in our life – the lack of mobility – granting us an incredible level of opportunity for our taking in education, employment, community involvement, and relationships. But, like a graduate with a degree, it’s up to us to make the most of our wheelchairs, to answer the question, what will I do with it?

Sure, despite the opportunity that our wheelchairs create, there are still other obstacles in our lives. For example, social stigmas remain, where some will put up road blocks for us based on their own skewed, negative perceptions about wheelchairs and disability. Yet, a wheelchair even goes as far as freeing us from many of those seeming limitations, as well, by allowing us to continually seek new opportunities when others don’t workout.

And, that’s the astounding nature of a wheelchair: It allows us to consistently seek new opportunities, to literally roll up to doors and knock. And, if someone closes the door on us – and some will, no matter our qualifications or tact – that same wheelchair will take us to fifty more doors, finding those that open. In this way, a wheelchair is an amazing tool of promise and opportunity, one that should inspire us to rid our excuses, push our boundaries, and grow our lives, propelling us full-speed toward education, employment, community involvement, and relationships.

I’m reminded of a conversation that I had after I spoke at a conference recently, where a young woman came up to me and explained that, in using her wheelchair, she’d never have such courage to roll onto stage, that she was inspired not only by the messages of my talk, but by my confidence to simply get up in front of 300 people and perform.

With a mischievous smile, I teased her that I had no intention of giving the keynote address that day, but that I was simply in the habit of following wheelchair ramps – and when I followed the ramp located on the left of the banquet room, I unwittingly landed on stage, with no choice but to just start talking!

In actuality, there’s a lot of truth to that tale, where I do believe in simply pursuing the ramps – read that, opportunities – placed before me. If my wheelchair will get me there, I believe that I have an obligation to myself, my family, and my community to live up to the promise that it presents, following my opportunities as far as I can – that is, my wheelchair removes many reasons and excuses why I shouldn’t pursue making a difference in the world to my fullest potential.

I know, contrary to my view, it’s a lot easier to look at our wheelchairs as reasons why we can’t succeed. In fact, it takes no effort at all. What’s more, we can even find support for such a self-defeating position, where if we tell people that we are disabled, that we use a wheelchair, many will buy into outdated cultural stereotypes about those with disabilities, allowing us to use our wheelchairs as 1,001 reasons why we can’t do this or that, why we can’t succeed. Indeed, doing little with our wheelchairs – with our lives – is so easy to justify.

But, the minute that we solve the equation properly, understanding that a wheelchair isn’t a variable, but a solution, we begin succeeding in the course of life. Like a college degree, our wheelchairs then become tools of empowerment and promises, allowing us to approach doors of opportunity, where it’s solely up to us to decide whether we’re willing to apply the desire, courage, and tenacity to knock on them. And, it’s when we make the choice – the commitment – to go as far as our wheelchairs will take us, even when we have to stretch our comfort zones and capabilities, that we find remarkable successes in life.

In this way, every morning, when I awake, I glance to my right, consciously noting that my power wheelchair is sitting beside my bed. And, that glance at my power wheelchair is my affirmation that, with the new day, I have the ability to follow my opportunities without excuses, where success isn’t limited by my disability, but pursued by my will.

No, my life with disability isn’t easy, and neither is yours – there are factors everyday that knock us down and slow us down. However, if we’re to be successful, we must understand that using wheelchair isn’t one of those limiting factors, that a wheelchair simply, faithfully moves us forward.

When you awake tomorrow morning, glance over at your wheelchair, realizing that it removes many reasons and excuses from your life as to why you can’t achieve greater success, and make the commitment to live up to its promise and opportunity by getting out in the world, pushing your boundaries, growing your life, propelling forward to make more of a difference in the lives of those around you. After all, your wheelchair will allow you to take your life as far as you wish, turning excuses into determination, and dreams into achievements – that is, your wheelchair proves your truest partner for success.

Our White Suits

By Mark E. Smith

Tom Wolfe, author of Bonfire of the Vanities and The Right Stuff, is a true American original, only wearing identical white suits. From a personal branding perspective as a writer, it’s brilliant – he’s trademarked his image as entirely distinctive, where no matter if you see him on television or in the grocery store, you immediately know it’s him simply by seeing his tall, lanky silhouette decked in that wild white suit.

I wonder, though, does Wolfe ever take off his white suit in favor of ordinary clothes? Does he ever throw on jeans, a T-shirt, and a baseball cap, and stroll into public? And, if he does forgo the white suit, do people treat him differently, viewing him not as the American icon of Tom Wolfe, but just as a guy named Tom?

If you think about it, disability is a lot like wearing a white suit wherever we go. After all, disability is distinctive, it brands us, it tells others who we are on some level – and, yes, for some, it dictates how they treat us. Of course, there is a difference between you and me, and Tom Wolf: He can take off his white suite, but we can’t shed our disabilities.

Yet, do we really want to take off our white suits, to shed our disabilities? I suppose that it’s human nature that all of us want to simply blend into a crowd at times, escaping our identities. In fact, I was at a disability conference several weeks ago, and while I just wanted to anonymously blend into the hotel bar one evening and relax, I couldn’t escape many folks recognizing me from my public roles – I can’t shake any of my white suits.

However, again, beyond naturally wishing momentary escapism, do we really want to shake off the white suits that we call disability?

Some might; but, those who are truly mindful don’t wish to shed any constructive parts of their lives, including disability. What I know is that every experience that we have contributes to our character, shaping how we see ourselves, how we see others, and how we view the world around us. And, if I were to shed my white suit – my disability – I would be shedding a bit of myself in the process. Truly, if I somehow discarded my disability, removing its daily experience from my life – the highs and the lows – I wouldn’t be myself, not the same father, husband, friend, or colleague. That is, shedding my disability would be giving up some of my unique perspectives, wisdoms that I wouldn’t want to lose.

Sure, I realize that some constantly tug at the sleeves of their white suit, their disability, viewing it as a restrictive device, a painfully conspicuous item that separates them from others, one that they’d rip off and run down the street naked – screaming, hallelujah! – if they could, glad to rid it from their life altogether.

However, I’m of the flair that, like Tom Wolfe’s white suit, our disabilities are an empowered tool when viewed with optimism and positivism, a testament to the strength of our character. I’ve met many whose white suits state compassion, exhibit perseverance, and demonstrate wisdom – those who understand that wearing a white suit can be an inspired component in their lives, where having experienced the uniqueness of disability makes them even more capable as parents, spouses, friends, and colleagues.

I say that if we can’t shed our white suites – and, ultimately we can’t – then we shall wear them with pride, with our heads up, shoulders back, strutting our stuff, individually saying to the world that I am someone of perseverance, understanding, and compassion, where I not only embrace my uniqueness, but that of all others.

On second thought, I bet that Tom Wolfe never takes off his white suite – because, man, wearing a white suit sure feels good.

Crumbling the Clay that Surrounds Us

By Mark E. Smith

An acquaintance recently emailed me a “day-in-the-life-of-a-disabled-person” video. Of course, I watched the video, and what I saw was a gentlemen with a severe disability getting himself up in the morning – bathing, shaving, and dressing, then catching a bus to work. Then, in the second half of the video he went through his day at work, returned home, went for a swim, had dinner, surfed the web, and went to bed. Put simply, the video showed the gentleman living a strikingly average life, just with the physicality of profound disability mixed in.

What intrigued me about receiving the video, wasn’t the video, itself. After all, it was about as boring as watching myself get ready for the day. Rather, what intrigued me about the video was the forwarded chain of emails that accompanied it, containing countless people writing of their amazement at the gentleman’s day-in-the-life abilities.

This email chain got me thinking: How is it that some still remain so seemingly culturally ignorant toward others that they are somehow enlightened by a video of a guy with a disability doing what everyone else does? I mean I understand that some folks aren’t familiar with those of us with disabilities, but if one sees a man or woman who has a disability, isn’t it a given to assume that he or she has to bathe, eat, and work like everyone else?

The answer, as insane as it sounds, is, no – some people have no understanding that those with disabilities live lives just like everyone else, where bathing, eating, and working are givens. Surely, those with severe disabilities have to overcome more than others in daily tasks, and I argue that those with disabilities cannot live mediocre lives if we wish to succeed, where we must pursue higher levels of education, and push ourselves above and beyond the everyday standards of others if we wish to make our ways to any success in the world at large. But, it shouldn’t be a surprise to anyone that we do mostly the same tasks as everyone else when it comes to daily living.

Last year, I wrote a piece about the television reality show, Little People, Big World, where I expressed my annoyance at the Roloff’s monologues that explain the obvious, such as that those of short stature have difficulty reaching high cabinets – and I noted that television viewers must be smart enough not to need such explanations. However, I received a host of emails stating that I was, indeed, giving the viewing public too much credit, that some folks truly are clueless when it comes to acknowledging those with disabilities and the lives that we lead. In this way, reading the comments on the forwarded email video that I recently received confirmed that notion, where some on the email clearly had no prior understanding that those with disabilities can lead independent lives.

Yet, I don’t believe that disability, in itself, has any influence toward provoking ignorance in others toward how we live. Truly, anyone who’s impressed that those with disabilities get up and go to work in the morning certainly has an overwhelming lack of cultural awareness as a whole, likely clueless toward countless cultures and backgrounds. After all, no one is going to exercise understanding and enlightenment toward people of all races, ethnicities, religions, orientations, and backgrounds, only to exclude disability. Truly, if a person is genuinely astounded that someone with a disability can get himself up for work in the morning, there’s no doubt that that person is uninformed about many others of diversity, where disability is simply one topic among many that’s escaped his or her radar screen.

However, we can’t fault such people – that is, we can’t presume that ignorance toward disability is an offensive act, or that others being impressed by our abilities is patronizing. What we should do is treat others with the same understanding the we, ourselves, seek, and give them the opportunity to learn and embrace us in their own time. Sure, some will watch such a video of the gentleman with a disability getting himself ready for work – or, even see you and me going about our days – and give no thought to the experience of others. Yet, some will watch such a video, or see you and me living life, and it will truly serve as an education, a lesson that they take to heart, an understanding that people are more the same than they are different, a realization that they will apply to many others of diversity, well beyond disability.

I heard the story once of an ancient Asian clay monument that sat in its location for centuries. The government sought to move the statue, needing to make way for a city’s expansion. With the statue being clay, they didn’t want to damage it in the move, so they called in the best cranes and operators, striving to delicately lift the monument. Unfortunately, in the process, the clay began crumbling, piece by piece. And, what was exposed underneath the clay astounded everyone: A solid gold core. The outer clay was simply a facade, where no one had ever sought to look at what was beyond it, leaving it’s true value unrecognized for centuries.

As people, we’re often quick to not only hide behind our own facades, but also to go through our lives oblivious to the tremendous depths of others around us. In this way, what I found truly remarkable about the gentleman’s day-in-the-life-of-disability video, was that he was generous enough to expose the intimacies of his life to others, and as illustrated through the forwarded email chain, others were receptive enough to learn from the video, to ultimately see past the clay, to recognize the gold within each of us.

And, that’s the answer to my question of, when will some people stop being so culturally ignorant toward those with disabilities – that is, when we, as those with disabilities, are gracious enough to forgo our facades and welcome all others into our lives, presenting them with invaluable opportunities to learn.

Close to Home

By Mark E. Smith

I’ve been around so many with disabilities, and heard so many stories about how disability unexpectedly enters people’s lives – from a birth accident to a never-before-seen disease – that I’m rarely surprised by what I hear. After all, I understand that any of our lives can change in an instant.

Still, when such a life change occur to someone who I personally know, it always thought provoking.

My acquaintance, Lou, is the type of person who a wife never wants her husband to hangout with. Lou’s the frat boy who never grew up, who if you meet up with him at a bar after work, it’s going to be a long night of carousing. To make matters worse, Lou’s part-time job has been as a one-man act, singing and playing guitar at bars a few nights per week. All of this adds up to the fact that if you are around Lou, booze and chicks aren’t far – which explains why he’s the type that our wives warn us of!

But, even my wife and sister love Lou. We’d go see him playing on a Wednesday night, and he’d give into my wife’s request, and play a Bon Jovi tune, her favorite, sounding every bit like Jon Bon Jovi, even though he hated every minute of it. And, Lou’s notorious for getting my brother-in-law in ridiculous amounts of trouble, bar hoping late into the night, but my sister could never stay mad at Lou due to his jovial, kid-like zest.

In my own hanging out with Lou, I learned that he was big into mountain bike racing, so through my roles in the wheelchair industry, I know wheel manufacturers in the bike industry, too, and I was able to hook him up with a wheel sponsor, for which he was appreciative. And, I’ve even taken my daughter to see Lou play his music, where he joked around with her like a big clown with a guitar.

So, eight weeks ago, we were all shocked when we got the news: Lou was in the hospital – at a trauma center out of town, no less.

From my career, I know that one only goes to an out-of-town trauma center when something is really wrong. But, what could have possibly happened to Lou that was so serious that he was rushed to a trauma center?

Was Lou an idiot, and got in a drunk-driving accident? After all, Lou’s been known to drink more than a bit when a good time is to be had.

Or, did Lou go over the handlebars of his mountain bike, maybe resulting in a head or spinal cord injury?

These were my first two thoughts; however, neither was the case.

Lou was simply at home one evening, watching his two small children alone, when he collapsed to the floor. At 33 years old, the eternal frat boy, Lou, had a major stroke, effecting both sides of his brain – his entire life screeching to a halt in an instant.

Fortunately, swift medical care saved Lou’s life. Yet, as you can imagine, the effects of his stroke are profound, affecting the right side of his body and his speech, requiring that he uses a wheelchair. Still, Lou’s cognitive skills thankfully remain, where he wishes to return to 90% capacity, namely because he states that he was only 80% before. That’s Lou!

My sister and brother-in-law went to visit Lou in rehab several weeks ago. My sister, of course, has grown up around me and others with disabilities, and has been fighting cancer, herself, during the past year, so she certainly went to visit Lou with greater empathy than others might posses, understanding how life changes in an instant.

Interestingly, my sister shared with me that Lou asked how I was. I couldn’t help but wonder if, now in his own wheelchair, Lou thought about me and my disability in a different light? I mean, was he asking about me as just another friend, or was there some understanding that, as the only guy in a wheelchair who he knew, I might somehow understand what he was going through?

On the other hand, what was I to say to Lou? I knew realities that others around him might not, that the obvious symptoms from the stroke were just a small piece of the puzzle, that he likely has a long road ahead of him, probably filled with frustrations, financial hardships, and stress that he’s never known. Yet, with perseverance and strength – that is, an understanding that life doesn’t knock us down without presenting us the opportunity to rise even higher than before – he could also not only get through these toughest of times, but even find a clarity within his life that would inspire him toward new directions of growth, empowering him to greater roles of success as a father, husband, friend, and colleague. Was this the talk to have, sharing with Lou that the fundamental key to succeeding in his situation – in any of our situations – is not to dwell on what we’ve lost, but to value where we are and focus on where we’re going?

Yet, I also understood that Lou was still Lou, and who was I to presume that he needed anything from me other than what had always been our relationship – that is, as just another guy hanging out, regardless of disability?

I opted to play it by ear, and had the privilege of attending a benefit for Lou this past week. Of course, Lou is Lou, so while there was a refreshing number of others with disabilities in attendance from his rehab center, it was an overall crazy rock-n-roll bash at a nightclub, with a bunch of bands, and more hot babes and booze than I’ve seen in quite awhile – all raising funds for Lou and his children.

And, when I ran into Lou in the lobby, I couldn’t help but be myself, treating him as the guy I know, pulling my wheelchair beside his, placing my hand on his shoulder, and razzing him a bit, stating, “Welcome to the gang, brother – may you not be a life-long member.”

Even he had to laugh at my warped – but well-intended – sentiments. Indeed, sometimes the best words of support and encouragement come in the form of the sickest of humor.

Mr. Flynt… About Your Wheelchair

By Mark E. Smith

Dear Larry,

I’m writing to let you know that you’ve ushered in a new day in America – at least for me.

It is true that I long lost sleep over you. I confess that you made me question my ideology that no one has a right to judge another’s choice of mobility. I mean, I truly don’t care what type of wheelchairs others use – if it works for them, great. Yet, you, in your lithium-induced haze, were the exception. Truly, I wished myself to sleep at night hoping that I could somehow bring your decadent, swinging soul into the twenty-first century with a modern wheelchair. I mean, really, Larry, why did you insist on using hospital-type wheelchairs for decades when mobility technology has come so far? You’ve made hundreds of millions of dollars exploiting others, so why not put some of that scantily-clad cash toward a good cause like a high-tech wheelchair for yourself?

Yes, I understand that your mind is often occupied with prescription medication, barely-coherent voices ranting about freedom of speech, and ambitions to further your pornographic empire. However, behind your glazed eyes, there must have been some room for consideration of improved mobility for yourself, right? After all, you demonstrated some sort of reasoning in gold plating your 40-year-old hospital-type wheelchair, so you clearly considered your mobility on some level.

But, alas, Larry, you have been redeemed, seen out-and-about in your new wheelchair, a gold-plated ultralight. No, I don’t know how one gold plates an aluminum wheelchair, but damn it looks good with your white, patent leather loafers.

Oh, Larry, aren’t you glad that you finally made the switch to a modern wheelchair, where your bodyguards have an easier time stowing it in your limousine, and where your adult film star dates have an easier time pushing you down the red carpet?

Surely you must. And, Larry, your new ultralight manual wheelchair must be easier for you to propel, too, right? In fact, I can imagine that you have much more energy now throughout the day, no longer struggling to move around the gaudy, red and gold decor that you call an office, with much more energy to do the activities that you most enjoy – like smoking fine cigars while pontificating about pornography.

Enjoy your new wheelchair, Larry – you wild and crazy guy!

-Mark

The Humble Within Us

By Mark E. Smith

I’m always surprised when I meet someone with a disability who comes across as seemingly brash, egotistical, and insensitive toward others. It simply contradicts what I know as disability experience, and I can’t fathom how anyone with disability assumes any sort of attitude of arrogance when disability is so intrinsically humbling?

I mean, sure, I recognize that disability doesn’t preclude any human condition, that one with a disability can prove just as inherently dysfunctional as another. However, again, how does one not become humbled by disability, at least on some level? That is, how does one live with disability and not realize how grounded all of us truly our in our lives?

Disability experience has taught me that as successful as any of us become, we are still intrinsically human, with real struggles and challenges, no matter who we are. Every morning, when I go through my routine to get up and out the door for work, it’s an uphill battle due to cerebral palsy, where some mornings, I feel like the process of getting myself from my bed to the shower to the breakfast table is a try-till-you-die, 5 am morning drill for the Marines.

However, there’s an affirmation to it all. I am reminded every morning that, as a man, I have limitations, that perfection and idealism will never be in my grasp – and, it’s alright. I am reminded how extremely fortunate I am to have physical abilities to at least some extent, and what a remarkable gift it is to have people in my life like my wife to turn to when I need assistance with even the simplest task like buttoning my shirt. And, I’m reminded that, as human beings, none of us are perfect, that we all face challenges, that we all need assistance at times, and that there’s tremendous value in recognizing the commonality among us.

In this way, disability gives us the gift of being humble, of appreciating the limitations that we all have, of valuing the challenges that we each face, and of how we should embrace the graciousness of others who care. Indeed, it’s tough to be arrogant when life with disability proves so wonderfully humbling.