Sorry, Disability Ain’t the Issue

By Mark E. Smith

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

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

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

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

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

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

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

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

The Effort of Hope

By Mark E. Smith

About a year ago, I had the privilege of speaking in front of about 100 inner-city youth going through a “life development program.” These were teens from the roughest streets of Philadelphia, relocated to a rural, live-in vocational program where they accomplished everything from earning a GED, to learning a vocation, to developing independent living skills. And, as the director of the program explained to me, while these young adults knew how to survive in the toughest of scenarios – abusive parents, violent neighborhoods, and a drug-infested culture – they struggled to see the potential of an educated, career-based life. It wasn’t that they didn’t want a healthy, successful life; rather, they didn’t know that they could achieve one. That is, hope wasn’t part of their emotional vocabulary. And, so among the reasons why the program invited me to speak and share my story of overcoming some tough odds was to further introduce the teens to hope, illustrated by my successes despite adversity.

Hope is a fascinating subject, where researchers have found it to be our most powerful life tool toward moving forward no matter our situation. We often confuse wishing with hope – but they’re very different. Wishing merely projects our thoughts into the universe, with no personal action behind it – that is, the only way we get results via wishing is by happenstance, coincidence, or blind luck. Generally, wishing does us little good in our everyday lives. You can wish with all of your might, for example, that your credit card debt will go away; but, as we all know, simply wishing debt away has no result – debt doesn’t disapear based on wishes.

However, hope is a much different process – it inspires us into action, and that does change our lives in very real ways. People who have hope possess the ability to look beyond their current situations, knowing that change in their lives is possible. Think for a moment how powerful of mindset that is: One without hope always feels trapped in current states, while one with hope always believes there’s something around the corner and seeks it. Hope, then, is a catalyst toward moving our lives forward in positive directions. In contrast to one simply wishing away credit card debt to no result, hope inspires us that we have the capacity to spend less, work more, and get out of debt. Wishing, then, proves futile while hope inspires action-based results.

Few places illustrate the power of hope better than in the workplace. No matter a company and its culture, the hopeless and hopeful employees are easy to spot, with few outlooks in-between. The hopeless show up every day dreading their jobs, dissatisfied with their lives, self-proclaimed victims of circumstance. They’ll tell you that their lives are stuck in a rut because of a bad boss, a poor economy, and on and on. Sure, they wish their lives would change, but without acting upon hope, they’re going nowhere.

In contrast, employees with hope are always on the look-out for new potential. Maybe they can ultimately transfer departments to a better boss, or maybe they have their resumes out at other companies. They don’t know exactly what’s going to improve their situations, but hope motivates them to try everything under the sun to move their careers forward. They’re not wishing, they’re doing, knowing that with effort, their careers can change.

Yet, here’s the real question that researchers have striven to answer: How do we find hope our lives to begin with – especially in circumstances when all around us is seemingly bleak?

I want to take you back to the program of inner-city city youth who I spoke with, and imagine for a moment that you’re among them. Say you’re a 16-year-old who’s grown up in West Philadelphia, in public housing. You’ve been raised by your grandmother because you’ve never known your father, and your mother’s a heroine addict. Your 14-year-old cousin just had her first baby, and on your way home from school everyday, you passed drug dealers and prostitutes – the only ones with money. Most of your friends are locked up, in some sort of gang, or are roaming the streets, few left in school. And, this is the only environment you know. There are successful people on TV, but that’s the closest you’ve seen to any kind of existence beyond your neighborhood, and it’s inexplicable to you how anyone on TV got to where they are in life. Now, how do you find hope for any future besides the grim reality that surrounds you?

Researchers have learned that while we, as humans, have the innate ability to hope, it must be socially triggered within us, then exercised by us. Literally, someone must inspire hope within us, and then we must run with it on our own. If inner-city kids stay in an inner-city environment, where there’s a culture of hopelessness – that is, no self-realization that there are possibilities for their lives beyond their grim surroundings – they will simply live hopeless lives, repeating generations of teen pregnancy, lack of education, drug use, and crime.

Yet, when such at-risk young adults as those attending the program that I visited are removed from their grim environment, and they are shown by others the boundless opportunities that they really have, they learn the foremost catalyst for succeeding in life: Hope. That is, they can then see the new potentials that their actions bring.

What’s even more amazing is that with hope as a socially initiated mindset, it’s not exclusive to common experience. See, hope allows us to relate to others on the overall theme of facing and overcoming adversity, regardless of type or origin. As a 40-year-old white guy, with a graduate education, white-collar income, and cerebral palsy, I may seem a world away from inner-city teens of ethnicity. Yet, in speaking with them that day – and as they later shared with me in a follow-up letter – we both inspired each other with hope. They looked at me and thought, Man, if he can get that far with cerebral palsy, I can make it through this program. Meanwhile, I remain in awe of them, thinking to myself, If these teens can grow up in the toughest of environments, and work their butts off to move their lives in new directions with such courage and effort, there’s no excuse for me not to push myself to take on more in life, no matter how scary a challenge may seem. Indeed, a mutual conveyance of hope is life-changing for all.

It’s no coincidence that all life-changing programs – from spinal cord injury rehabilitation programs to 12-step recovery programs to offender reform programs – include the key component of mentors who have transcended their challenges and demonstrate hope for others. Again, hope stems from social awareness, where what we see in others effects what we can envision for ourselves – and when we see someone else who’s accomplished a goal, we have a better understanding that we can, too. We, then, have hope.

What we must realize is that hope is the key ingredient that moves us forward, where while we can never totally know the outcome of any well-intended effort, it’ sure to take us somewhere positive in the process. If you’re struggling with a seemingly hopeless situation – maybe you’re in an unsatisfying job, relationship, or lifestyle, in general – make an effort to find hope. For example, if you hate your job, feeling trapped by what you perceive as limitations based on your company’s culture, your education, and the economy, but the guy next to you with the same skill set just found a better job, follow his lead, use him as a catalyst for developing your own hope. After, all, we see this opportunity for hope within the disability community all of the time, where those with the severest physical disabilities are often the most successful – educated, with esteemed careers, and healthy families – and they offer us all hope that we can achieve the same. We must look at others and tell ourselves, If he or she did it, I can, too – that’s how finding hope works.

And, if you’re one who’s overcome challenges to great success – maybe disability, or addiction, or unemployment, or weight loss, or changed your life in a dramatically positive way – make yourself a “conveyor of hope” to others. Again, hope isn’t challenge-specific, but life-specific. Maybe you’ve overcome tremendous challenges with your disability, but your friend is struggling with weight loss. You should make an effort to be a conveyor of hope in such situations, noting something to the effect of, I’ve never struggled with weight loss, but I remember how frustrating my physical rehab was after my accident, where I put so much effort into it and saw little results at the beginning. But, I stuck with it, and eventually the results came, where I learned that perseverance pays off. No matter the challenge, such a personal anecdote is sure to inspire hope in others.

Of course, there are no constants in life, and such is the case with hope, where we all can lose hope from time to time. I, myself, have struggled in such moments, earlier in life with incurably alcoholic parents, and later in life with an ailing marriage. And, yet, amidst those times of great inner turmoil, where I saw no resolution to the situations in the moment, reminding myself to recognize hope for the future pulled me out of those moments of despair, knowing that although I couldn’t predict the future, I had hope that all would work out for me as long as I pursued productive, healthy actions. See, hope ties into the old adage that it only works when we work it – and when we truly work it, backing it up with efforts to move our lives forward, it has its way of working seeming miracles for us.

No, hope isn’t a guarantee to success or the route to an ideal outcome. Rather, hope is a compass of direction, a mechanism where when we truly work at it – send out those resumes, hit that gym, pursue healthy relationships, accept your disability! – our efforts have an inexplicable way of propelling our lives to levels of satisfaction that we never dreamed.

Spastic Half-Wit

By Mark E. Smith

I read that 92% of women and 56% of men struggle with some sort of low self-esteem, most commonly relating to “body image” or “feeling like one doesn’t measure up to others.”

In my experience, those statistics prove unfortunately true in everyday life, as I encounter many who confide in me – or indirectly suggest – such feelings of self-insufficiency. However, what’s striking is that it implies to me that I should be horrified by who I am: A spastic, half-witted guy with cerebral palsy, big ears, a goofy smile, and no talent, who doesn’t really fit in anywhere. I might as well put out a self-titled album, Rolling Disaster.

Really, I have attractive, intelligent, popular, able-bodied people tell me all of the time how insufficient they feel. Women who have model-like beauty and super intellects tell me that they’re disturbingly unattractive and unintelligent. Men who are brilliant tell me of their constant insecurities. And, it leaves me thinking that if all of these truly perfect people feel so horribly about themselves, I must really be a freakish wreck on wheels, where I truly do have many of the deficiencies that they wrongly project upon themselves. I mean, let’s be real – have you seen me? Again, I’m a spastic, half-witted guy with cerebral palsy, big ears, a goofy smile, and no talent, who doesn’t really fit in anywhere – who’s more of a literal mess than me? And, readers send me hate emails confirming those facts all of the time, so surely they’re true.

Of course, unlike the 92% of women and 56% of men with low self-esteem, I actually accept and embrace who I am. Indeed, I may be a rolling wreck, but I know that I can’t change aspects like having cerebral palsy, so rather than despising who I am, I make the most of who I am – much of which is based in gratitude for whatever I’ve been bestowed in life. Sure, I’m a spastic, half-witted guy with cerebral palsy, big ears, a goofy smile, and no talent, who doesn’t really fit in anywhere, but even those are traits not to be squandered. I say, why not be the best spastic, half-witted guy with cerebral palsy, big ears, a goofy smile, and no talent, who doesn’t really fit in anywhere, that I can be, right?

See, what I know is that our potential isn’t limited by what we lack; rather, our potential is maximized by what we have. And, too many of us count ourselves short, only seeing deficiencies – or, worst of all, buying into the criticisms of others – when we should be focused on our true potentials, our greatness within. We have this one body, mind, and life, and let’s make the most of them, where it’s not what we have, but what we do with what we have that makes all of the difference.

I could have looked at my life with spastic cerebral palsy and believed the pundits from birth, settling for an institutionalized life of physical dependency on others; but, instead, I sought to believe in developing whatever physical abilities that I could muster toward independence. I could have seen myself as having the cognitive deficiencies that doctors diagnosed me with when I was an infant; but, instead, I scored an I.Q. atop the charts, pursued a college education, going on to a successful career path serving others. I could have looked at myself in the mirror, seeing my cerebral palsied body – my undeniable “freakishness” – and never pursued relationships or a family; but, instead, I have a beautiful daughter, the center of my life. I could have presumed that I had no talent; but, instead, I write, give talks, and work in the wheelchair industry with great creativity. And, I could have looked at my power wheelchair as a device that prevented me from fitting in; but, instead, I combine my unique appearance with my personality to shine in crowds.

Indeed, every day I could write a thousand-line list as to how I’m not on par with everyone else, how I’m a spastic, half-witted guy with cerebral palsy, big ears, a goofy smile, and no talent, who doesn’t really fit in anywhere; but, instead, I recognize the positive attributes that I do have, and make the most of them, dedicating myself to family, career, and community.

Really, we’re a lot like old cars, where we may think of ourselves as clunkers, but with the right attitude, we truly shine as collector-quality classics. Take some time to look in the mirror, and see the shine in you – it’s there, you just have to open yourself to it. And, if it makes you feel better, you can say, At least I’m not a spastic, half-witted guy with cerebral palsy, big ears, a goofy smile, and no talent, who doesn’t really fit in anywhere, like Mark!

After all, if I’m doing great with all of my freakish flaws, you must be nothing short of a spectacular masterpiece of a person with your remarkable strengths, talents, and good-looks.

The Great Diaper Caper

My sister didn’t believe that I could actually go through with it. After all, we’re taught from an early age via potty training that peeing our pants – especially in public – is bad. So, as a guy pushing 40, how could I possibly just sit there and pee my pants at will in public, she wondered?

By Mark E. Smith

My sister didn’t believe that I could actually go through with it. After all, we’re taught from an early age via potty training that peeing our pants – especially in public – is bad. So, as a guy pushing 40, how could I possibly just sit there and pee my pants at will in public, she wondered?

This all began two decades ago when I flew from San Francisco to Lisbon, Portugal, and I went 21 hours without urinating. I’m sure that it was some sort of record at the time, but because the Guinness World Record officials weren’t there to document it, it didn’t count. Nevertheless, I didn’t go without urinating for 21 hours to set a record – though such recognition would have been nice – but I did it out of necessity, as my using unaccommodating restrooms, as with those on airplanes, was too difficult based on my disability.

In college, my long days similarly required me to refrain from using the restroom for 16-hour stretches, and while bladder infections and urinary tract inflammations ensued, I prided myself on having a bladder of steel – able to go entire days on a single sip of water.

Once established in my career and routinely flying, I returned to my old tricks, dehydrating myself for several days, able to fly cross-country without using the restroom – but not without the same, old toll on my body. I inevitably found myself with bladder infections and such once again, but I just did as I needed, keeping it all to myself. I was glad to be working, and any toll on my body was a small price to pay – I was a sort of binge-and-purge bladder expert, where it was part of my professional skill set.

Of course, along the way, some suggested solutions like catheters, but none seemed practical – at least not as practical as simply holding it for 21 hours (OK, holding it for 21 hours isn’t practical, either, but it is impressive, which is why I wish Guinness was there!). So, for two decades, I played bladder roulette, and as unhealthy as it was, it got me by. And, what always struck me was that in the grand physical scope of my disability, my bladder – that is, situations where I couldn’t use a restroom – was among the biggest issues. Forget walking – I just wanted to pee when I had to.

However, the last year brought dramatic changes to my life. I’ve been on a crazy fitness routine that requires a phenomenal high-protein diet, and at least 72 ounces of water per day to metabolize it all. The result is that I’m constantly hydrated and maintaining the best bladder health of my life. On top of that, I attended more pee-limiting events this past year than ever before, so the juxtaposition of being super-hydrated, with a bladder that doesn’t seem to be made of steel anymore, created some long days and flights when I couldn’t use a bathroom, all with a bursting bladder. I knew that with my career in high gear, and wishing to optimize my health, I had to find a solution to my decades-old bladder dilemma. And, that’s when it occurred to me, like a Freudian revelation mixed with a scene from the series, “Jackass”: Mark, you just need to man-up and pee your pants when in a pinch like everyone else these days!

It turns out that a huge number of people in the U.S., out of medical necessity, rely on adult diapers – to the tune of a $4-billion per year industry. Even bad-ass ball player, Ken Griffey, Sr., is a spokesmen for the Depends brand of adult diapers – and without discounting his battle with prostate cancer, one has to admit that it’s pretty cool that he’s like, Yeah, I’ve rocked the Depends – and you should, too. And, the adult diaper industry has become marketing savvy, where they’re not calling the product “adult diapers,” but “maximum absorbency underwear.” Therefore, it occurred to me that if such a product was serving so many others so well, “maximum absorbency underwear” might solve my issue on cross-country flights and such, where, let’s be frank, I could simply pee my pants – just like bad-ass ball player, Ken Griffey, Sr.

Yet, I was still skeptical – I needed more research, more proof that “maximum absorbency underwear” really worked. Naturally, I turned to the most authoritative source online for such subjects: YouTube. I discovered that college kids are big reviewers of “maximum absorbency underwear,” where they put them on, get plastered drunk, and pee themselves, noting the results. And, overwhelmingly, they remark how much the product absorbs, how dry it keeps you, and how fresh you smell (namely due to pH-balancing qualities in the product). So, with bad-ass ball players like Ken Griffey, Sr., and binge-drinking college kids touting the merits, I figured that I couldn’t go wrong with sporting “maximum absorbency underwear.”

Coincidentally, around this time, I was at a home-medical trade show, and came across a giant booth of a particular adult diaper brand, with a hot, 40-ish woman working it. I was immediately drawn into the booth – admittedly to both perform further diaper research, and talk to the hot sales woman. As she gave me her sales pitch, she, in fact, explained, that she, herself, wore her company’s diapers – not out of medical necessity, but out of belief in the product. Of course, I couldn’t resist pushing the subject, morbidly intrigued that this woman, without real need, would put on “maximum absorbency underwear,” and just pee herself, and she went on to explain that she likes to wear them under her Spanx compression undergarments, so no one knows she’s wearing a diaper. I immediately realized that this woman could be the most shocking one-night-stand ever for an unsuspecting guy. Not only would she suddenly appear 20-pounds heavier upon removing her Spanx, but her further undressing would reveal her wearing a diaper for no apparent reason. I’ve never been the most discriminating guy toward getting lucky, but even that scene would have me peddling my wheelchair as fast as possible, like Fred Flintstones’ car, to get the heck out of that hotel room!

So, with my research done – Ken Griffey, Sr., binge-drinking college kids, and a bat-wit-crazy diaper saleswoman – I was ready to take the plunge into “maximum absorbency underwear” for my next flight. It turned out that Depends makes briefs, with patterns and all, that look close to actual designer underwear. No, they don’t actually pass for designer underwear – they are diapers, after all – but I reckoned that I’d look closer to Austin Powers on a water bed than Baby Huey in a giant crib. I say, if you’re going to rock a diaper, at least rock it well.

Now, I’m raising my teen daughter with a sense of awareness – and reluctant humor – so I dragged her to the pharmacy with me to buy my first 6-pack (a subliminal marketing ploy by Depends, associating manly diaper quantities with manly beer quantities), of designer Depends. And, my daughter, to her credit, was totally cool with it all – except when I showed her the woman’s version, noting that she would never have to leave class for a restroom break again if she wore them to school, that they were really a great study tool. Alas, I just got the stare, the one that says, Dad, I’m already putting up with your shenanigans – don’t push your luck.

Upon returning home with not just a 6-pack of Depends designer “maximum absorbency underwear,” but a 12-pack – because I’m a real 12-pack manly man – I called my sister, and she suggested that I put on a pair and test them out. However, I saw nothing practical or funny about peeing myself in the privacy of my own home for no good reason. I’m of the Generation X, where despite the necessity, I saw the real humor in peeing myself for the first time on an airplane, where the person sitting next to me would have no clue, where I might even be inclined to turn to him or her and say, Wanna know something awesome? I just pissed myself, and look, no one can even tell.

The next day, I drank an absurd amount during breakfast, saddled up in my diaper – read that, designer “maximum absorbency underwear” – and hopped a flight out of town. As cruel as life can be, the one time that I wanted to pee on a flight – the first time in my life! – I didn’t have to go. I was beginning to wonder if the magic to Depends was psychosomatic just as my sister suggested, that it’s tougher to voluntarily pee your pants than one might think.

Finally, with the plane’s engines humming, I looked out the window next to my seat, and realized that it was game on – I had to pee. So, I did – I just let it rip. And, everything that everyone said – Ken Griffey, Sr., binge-drinking college kids, and the bat-wit-crazy diaper saleswoman – was true. The pee seemingly disappears into a little pouch of technological marvel – no wetness, no leaking, no smell.

I turned to the guy next to me, but he was sound asleep, so I looked across the aisle to make eye contact with someone for an admittedly juvenile sense of amusement. And, an old lady leaned forward, smiling at me, just as if she was welcoming me to the club.

Peacock Feathers

By Mark E. Smith

The kid tells me that, at age 23, he’s bummed that he’s not scoring with chicks, that he thinks his disability is the hindrance. And, I tell him that, for the most part, he’s right. It’s evolutionary psychology, I add. Most people in their 20s are all about the superficial – peacock feathers attracting each other in the most primitive ways. But, you, my friend, have to be in it for the long haul, where you’re patient enough for the Scales of Justice to tip your way – and they will. Right now, these chicks are running scared on instinct, they’re looking for the stereotypical suitable ones – and that’s OK for the time being. They’ll find an average guy who’s attracted to them, and they’ll call him the one. Maybe he’ll have a high-school diploma or a bachelor’s degree, and he’ll have a secure but routine job, pulling in $30,000 or $40,000 per year. But, it won’t be perfect – not the guy, or his job, or any of it, the relationship. But, they won’t see that for a while – they rarely do at that age. However, at some point, the bills pile up on the kitchen counter, babies are born, and it’s hard to get ahead, even though she works, too. By 30, it’s all one big, daily reality check, dreams not fully realized but painfully dashed when contemplated. And, all over what? Peacock feathers when they were 23. But, you – you’re different. You’re not about peacock feathers or mediocrity in your 20s. You’re going to use this time to build your character, nail a Master’s degree on the wall, build an esteemed career, become a man of the world, where you’ll read Kafka, shave to Rachmaninoff, and visit Madrid, Paris, maybe Rome. And, when you’re 35 or 40, the Scales of Justice will absolutely tip your way. Women – not chicks – will admire you for your brilliance, and they’ll want to listen to you because you truly listen to them. They’ll be turned on by your ability to command a presence in a room, how others respect you, how you’re the kind of role model that a father should be – where it’s no longer about peacock feathers and disability, but that you can offer what few other guys can: A fascinating view of the world that she’s never seen.

The Common Sense Cure

By Mark E. Smith

More than once, I’ve published an essay on how I’m not a man with a disability waiting for a cure, that I’m grateful for the life that I’ve been given, and I wouldn’t ask for a different life path. I was born with cerebral palsy, I live with cerebral palsy, and I’ll die with cerebral palsy – and I’m grateful for the life encompassed within, as-is. I’ve also written about how I don’t believe that it’s healthy for anyone to put his or her life on hold awaiting a cure – life is what we have in front of us at any given moment, so let us make the most of it.

Nevertheless, despite my own self-acceptance and encouraging all to live life to the fullest as-is, I’ve increasingly supported cure-based causes, not toward any specific condition, but toward the betterment of the human condition overall, where if we can treat and prevent a range of disabilities moving forward, we’re evolving humanity – and changing individual lives – in very meaningful ways. Spinal cord injury research toward a cure is a great example of one cause among many that I support, where I recently spoke at the national Unite 2 Fight Paralysis Science and Advocacy Symposium in Phoenix.

Now, you may be wondering, why I, as one with cerebral palsy, who’s not looking to cure myself, spoke at a cure-based conference geared toward paralysis? My appearance actually made perfect sense to me and the 150 people in the audience. See, the foremost area of research toward treating and curing spinal cord injuries is stem cells – and stem cell research potentially effects every person on the globe, likely treating and curing more than 80 illnesses, diseases, and disabilities. And, what’s amazing is that we’re already seeing results, where children’s own umbilical cord blood stem cells have been used in recent years to treat their illnesses and disabilities – including cerebral palsy. In fact, my sister, a cancer survivor, had her daughter’s “cord blood” banked, so that in the event that my sister has a recurrence of cancer, she has cord blood stem cells to dramatically aid in her treatment (and the same cord blood can likewise serve her daughter or husband toward illness and disability, if ever needed). Therefore, my talk wasn’t about curing any one condition, but about uniting our voices in support of research toward enhancing the human condition through research-driven cures as a whole.

Interestingly, my position of seeing tremendous humanitarian value in curing as many conditions as possible places me at philosophical odds with a radical fringe of the disability community – that is, a select few who believe that cure-based efforts do nothing but harm those living with disability by suggesting that we’re damaged goods, needing to be fixed, that we need to forget about cures and emphasize disability as a “natural part of human diversity.” However, here’s the problem with such fringe thinking: It contradicts science at best, and is inhumane at worst.

If we look at the origins of “disability” in an evolutionary context, it’s classified as three primary causations: A genetic or developmental anomaly; an injury; or, a disease or illness. To presume all of those as a “natural part of human diversity,” is scientifically invalid. We know that, barring modern medical intervention, genetic or developmental “variants” that are detrimental to survival weed themselves out, so they become extinct. We know that “injuries” are an anomaly that are totally avoidable beyond the given circumstance that caused injury – as in, there’s nothing “natural” about getting paralyzed in a car accident. And, we know that many diseases are preventable based on human behavior, diet, and environment. In these ways, it becomes impossible to argue that “disability,” as a scientific absolute, is a “natural part of human diversity.” Scientifically speaking, forms of cerebral palsy, paralysis, and HIV simply don’t occur unavoidably by nature in each of us – they result from extraneous factors – and many genetic variations would become extinct if modern medicine wasn’t able to preserve so many lives at birth. In this way, stating that we should “simply accept disability as a part of nature” truly goes against what we know from science, that very few disabilities are literally a “natural part of human diversity,” but occur via other causations – ones that are increasingly preventable and treatable. Using paralysis as a perfect example, we’ve used research in the automotive field – occupant restraints, headrests, and so on – to reduce injuries, and it only makes sense to use research in areas like stem cell therapy to treat any injuries. A cure for paralysis, therefore, isn’t altering a “natural part of human diversity”; rather, it’s using science to resolve an injury, restoring one’s full abilities.

Secondly, the belief that the quest for cures somehow detracts from those of us living with disabilities is a specious argument. Do some able-bodied individuals think that we live lesser lives without a cure? Of course they believe such. Do some individuals with disabilities feel that they, themselves, live lesser lives without a cure? Of course they believe such. However, they’re not emblematic of most of us, where we’re intellectually balanced enough to see both exceptional quality of life in living with disability while simultaneously supporting the quest for cures. Yet, the disability radicals will tell us that we can’t have acceptance and dignity while also supporting cure-based efforts. And, the radicals’ bitter, illogical perspective couldn’t be more distorted or inhumane.

I think back to my daughter’s birth, where due to my wife’s genetic condition, my daughter had a 50-percent chance of being born with a severe disability, where brain surgery would be needed to stop the progression of the condition for her to live. I had cerebral palsy, and my wife had genetic generalized dystonia, so we both knew how well we were living with disability, that we didn’t doubt our daughter could do just as well despite the projected health issues. We knew the risks and we were willing to love and raise our daughter, disability or not. However, as parents, of course we hoped that our daughter didn’t have the genetic condition. After all, given the choice, what rational parent wants his or her child living with disability? Although our daughter was born without the genetic condition, we were prepared to love her either way, but we were likewise relieved that she was born without disability. The question is, then, because I was relieved that my daughter wasn’t born with a disability, was I diminishing my own self-worth as one with a disability, did my mindset suggest that I didn’t want my daughter to be a lesser person like me, as the fringe’s thinking suggests?

Of course not. I was simply a father wanting the absolute best for my daughter – it’s how fatherly love works. Again, no rational parent would choose disability for his or her child, just as no rational person would wish unbridled disability as a fixture of human existence when we have potentials for prevention and cures.

From this perspective, we have to wonder why, by default, do those opposed to cure-based efforts seemingly want others to endure unbridled illness, disease, and disability, and suggest that if you support the quest for cures, you’re truly devaluing disability experience? Why do they stick to their position of, Disability is natural, and by seeking cures, we’re not accepting disability as valid way to live – we need acceptance of disability, not cures?

What they’re missing is a balance in their disability experience. They’re so wrapped up in themselves that they have no ability to consider the lives of others. Again, I can be totally accepting of my own disability while wanting absolute function and health for everyone else – it’s called having empathy and compassion. In very simple terms, I can’t walk, and I’m fine with that; but, I want everyone else to walk because it makes their lives easier on a fundamental level. What the radicals don’t understand is that you can have a disability and compassion toward others at once, where you can be completely comfortable in your skin, but still not wish hardships on others. And, most importantly, you can be totally accepting of disability while simultaneously striving to help others avoid its challenges through cure-based efforts.

See, I support the quest for cures not because of the promise that they show toward me, but because of the promise that they show toward all of humanity.

From Humble to the Humbling

By Mark E. Smith

Humble is an intriguing word, one that many can’t literally define, and when they do, “not arrogant” is a definition that often comes up. If you read corporate mantras these days, virtually all companies state wanting “humble” employees, ones who presumably aren’t arrogant, and recognize that they always have room for improvement – admirable traits, of course.

For those of us with disabilities, while being humble is a great trait to have, we have no choice but to endure the “humbling” – and there are profound differences in shifting from the adjective form, humble, to the verb, humbling, truly unveiling disability experience at a level that others rarely see.

In our public persona, whether we’re at work, on a date, or wherever, we, as those with disabilities, have the ability to appear just as humble or arrogant as anyone else. Yet, we are distinct from most others in a very striking way: We can’t escape living truly humbling lives, regardless of our persona.

What many don’t realize is that while the definition of humble is, “modest, or not arrogant,” the definition of humbling is, “to lower in condition, importance, or dignity.” And, as those living with severe disabilities, virtually all of us have struggled with the intrinsically humbling nature of disability experience at times, if not much of the time – that is, disability can make us feel very undignified and lesser than others at certain moments, no matter our acceptance or successes.

Grand Rapids-based author and speaker, Johnnie Tuitel, has flown over one-half million miles – all while having cerebral palsy and using a power wheelchair. Tuitel, poised and polished, was recently on his way from West Palm Beach to Kansas City, to speak at the National Self Advocacy Conference, and all was on schedule as he was transferred into his airline seat by U.S. Airways attendants. By all appearances, Tuitel was a successful businessman, on a typical business trip, where disability wasn’t an issue. However, all of that was about to change.

Soon, a U.S. Airways gate manager and flight attendant approached Tuitel, explaining to him that he would be removed from the plane immediately because he was “too disabled to fly alone.” According to U.S. Airway’s policy – and arguably in violation of the Americans with Disabilities Act – they do not allow those with severe disabilities to fly alone. And, the gate manager flagged Tuitel as too disabled to fly alone.

Imagine for a moment the reality of Tuitel’s situation, and how humbling it was to him, as it would be to any of us. Due solely to Tuitel’s disability, he was transposed in an instant by U.S. Airways from a man of common humanity, on the level of every other passenger, to being deemed a lesser human being, unfit to fly. In the immediate, it must have been shocking, angering, and humiliating to Tuitel; but, ultimately, it was humbling, where per the very definition, Tuitel was unjustly made of lower importance than others, with his dignity removed – simply a consequence beyond his control of living with a disability.

Indeed, many of us can relate with Tuitel’s experience of how humbling it can be dealing with the public when we have a disability, where common aspects like a waitress speaking to our companions instead of us, directly – as if our physical conditions effect our intelligence – can adversely effect our dignity. Tuitel’s experience may be shocking to some; however, for many of us with disabilities, it’s recognized as more common than we’d ever wish, where we know such humbling experiences all too well – and how they often appear out of nowhere, beyond our control, simply a consequence of living with a disability.

Of course, the humbling nature of disability isn’t only faced in public, but actually far more commonly in our personal, daily lives. As well as we cope, it’s still humbling to share the intimate details of living with disability with even those close to us. In fact, the first time that I had a girlfriend spend the night at my place was one of those times that stands out in my mind – humbling, to say the least. See, I wasn’t nervous about having intimacy with her. To the contrary, I was fired-up about that part, as most young men are. However, I was deeply self-conscious about the realities of having a woman literally spend the night in my bed with me, and to share some of the everyday realities surrounding my cerebral palsy.

Based on the fact that I couldn’t easily transfer out of bed in the middle of the night to use the restroom, I had to rely on using a urinal – in bed. So, there I was, wanting to be a handsome, romantic lover, but constrained by the realities that I was still a guy with cerebral palsy, who had to share among the most seemingly undignified parts of my life with my girlfriend if I was to take my relationship to the next level. The thought of using my urinal while sleeping in the same bed as my girlfriend mortified me, but I also recognized that it was a reality that I couldn’t avoid.

For several days before we were to spend the night together, I played the scenario in my mind: I was going to have the most romantic night ever, with me as the cerebral palsy version of Richard Gere. Yet, the reality was that I would be in bed with a beautiful young women, all cuddled up one moment, then likely having her see me use a urinal the next minute – that was a daunting, humbling realization to face.

I put off having to use my urinal as long as I could that night, till I couldn’t any longer. It must have been three- or four o’clock in the morning. And, I finally took my urinal from its hiding place in the nightstand drawer, held my breath out of mortification, and did what I needed to do to use it. As quietly as possible, I put it back in the night stand, and I lay back down, seeing her glance at me in the dawn light. She pulled the covers up, put her arm around me, and all without a mention. Somehow I had the courage to get past my extreme self-consciousness that night – but not without it being a very humbling experience, where my vulnerabilities where readily exposed.

As those with disabilities, we all go through exceptionally humbling experiences, some of which are public, and many of which we keep to ourselves, where only those closest to us know the true daily struggles that we face. Some humbling experiences are initially defeating, like Johnnie Tuitel being removed from the U.S. Airways flight. Other humbling experiences are inspiring, like my girlfriend being totally gracious and accepting of the realities of my disability upon our first night together. And, for most of our humbling experiences that we face due to disability, we eventually reach a point where we merely do what we must to get through each day, where the humbling is our commonplace, one that many never see or know of, but that we simply live – with a striking dignity to it all.