When Flirtation is a False Alarm

By Mark E. Smith

I was flipping through the television channels late one night, and came across an episode of the cartoon for grown-ups, Family Guy. What caught my attention was that there were two characters using wheelchairs in a night club, and the one character said to the other, “Get out there and dance with the ladies…. They love us guys in wheelchairs because we’re nonthreatening.”

There was a lot of truth to the character’s statement – but it also ties into an underlying mythology that surrounds those with disabilities in such mainstream dating scenes, that we’re flirtation magnets.

It’s interesting how often I hear those who are able-bodied note that those with disabilities attract all of the attention at bars and clubs from the opposite sex. And, it can prove strikingly true. In fact, you may have witnessed or experienced this phenomenon for yourself, where those with disabilities who possess outgoing, self-confident personalities have no problem getting others to seemingly flirt with them. And, if one with a disability is so inclined, one can often have a “hot one” dancing with him or her in no time, with some seemingly romantic advances involved. And, it, indeed, all ties back into what the character on Family Guy noted: Those with disabilities can come across so nonthreatening that strangers of the opposite sex in bars and clubs are quick to warm up to them in ways that they might not warm up to other strangers, where those with disabilities can seemingly get a lot of action, as the hip kids say.

Yet, what many observers don’t realize is that the dynamic that’s occurring is almost always an illusion, that the individual with the disability truly isn’t getting any sustainable action at all. Rather, individuals often simply act overtly friendly, sometimes flirtatious, but with very innocent motives, toward those with disabilities. Indeed, a woman in a bar might sit on a gentleman’s lap who uses a wheelchair, but she usually does so simply because she’s so comfortable and trusting of him – a striking contrast of intentions compared to if an able-bodied woman were to cozy up to an able-bodied man in such a way, where both may interpret it as a true physical advance. And, this is where the social confusion of mixed messages comes in for casual observers, as well as those with disabilities: The rules, in general, apply differently in such scenes for those with disabilities versus those without.

See, when two able-bodied individuals are flirting with each other in a bar all evening, it’s safe to assume that there’s a real mutual, romantic attraction, and they very well may end up “going home together.” Such a scenario is a sure sign of the courting rituals in our modern culture – or, more aptly, “hook-up culture” – that most people easily identify. Therefore, when most observe an individual flirting with someone with a disability, they apply this same “mainstream” standard, and assume that it’s the same courting ritual that they’ve experienced – that is, if someone appears overtly flirtatious toward one with a disability, they’re looking for more than a friendship, and romance and physical intimacy could likely occur.

Where misinterpretation comes in is that many people don’t realize that the “flirting dynamic” toward those with disabilities by those who are able-bodied is typically much different in such social settings than flirtation between those who are both able-bodied. Again, the reason why many are drawn to those with disabilities in a “pick-up scene” is because of the perceived nonthreatening nature of the individual with the disability. For example, if a woman is seeking a nonthreatening experience, she’ll often choose to give her attention to a man with a disability over able-bodied guys cruising a bar or club. This reality is based on the fact that, for better and for worse, men with disabilities in our culture simply aren’t perceived as sexually-aggressive, and many women in social scenes can find them as a sort of unintentional safety net, where women can seemingly flirt and have a great time without fearing the sexual expectations that they presume that able-bodied men have. (Of course, men with disabilities are just as sexual as most men – and not all able-bodied men are sexually aggressive, either! – but social stigmas and stereotypes prevent some from recognizing these facts.) This dynamic applies equally to women with disabilities, as well, where a man may act more chivalrous toward her out of kindness – or, dare I say, to appear sweeter to his real love interest – which can be misinterpreted by one with a disability as true flirtation.

And, it’s in the realm of nonthreatening interactions and mixed messages where disability-related mythology comes in. To the uninformed observer, an able-bodied person engaging with someone who has a disability in a club or bar – as with a woman sitting on a gentleman’s lap who uses a wheelchair –can unquestionably appear to be involved in a courting ritual. However, such appearances are usually deceiving. Based on remaining stereotypes and stigmas in our culture, it’s a monumental leap for most able-bodied individuals to go from being overtly friendly with a stranger who has a disability in a bar or club to having actual physical intimacy with him or her in one night. There are typically far too many implied unknowns for an able-bodied individual to engage in any sort of physical intimacy with one who has a disability after simply meeting him or her at a bar or club. Again, a woman, for example, who’s seeking nonthreatening company – or, possibly, simply to feel better about herself – in a bar or a club isn’t looking to go home with the guy with the disability who she’s socialized with for a few hours. Based societal views toward disability, it’s typically too big of intellectual leap for her to make in such a short amount of time – from the bar to the bedroom with one who has a disability – and, in most cases, actual physical intimacy isn’t even in her mind, where if questioned on her intentions, she’d sincerely tell you that she was simply being nice and having fun. In this way, observers – and those with disabilities, themselves – often confuse such scenarios as courting rituals, when they’re truly nothing more than one person being dramatically friendly and playful with another.

Whenever I encounter this dynamic, where a woman has seemingly flirted with me, and my friends are like, Dude, that chick was all over you!, I’m quick to honestly explain that, no, she wasn’t all over me, that she was simply was being friendly and playful – a very different experience than most of my able-bodied pals have known when women flirt with them, where the intentions are totally different. More so, as I’ve matured, I’ve become honest with myself, recognizing the profound difference between a woman simply being nice and playful – or, patronizing with her flirtation – and those who are truly interested in getting to know me as a person. And, I’ve developed very little tolerance for such antics as patronizing flirtation – I can read it for what it is, nonsense. I’d rather have a meaningful, quiet conversation with a woman as friends than have an intoxicated, overtly flirtatious woman put her hands on me for show in a bar (though, I’ve certainly done it in the past – out of bravado, insecurity, and immaturity).

Yet, I have friends with disabilities who buy into the whole illusion, using such skewed dynamics in bars and clubs to bolster their own egos – and, as I tell them, it’s pathetic and degrading to both people. If the able-bodied person tries to use one with a disability as a sort of safety net or patronized flirtation to make themselves feel better, and the person with the disability plays along to get whatever he or she can get, both people are playing each other – and someone is bound to lose in the end (usually the one with the disability who’s hoping to score, but ends up going home alone, without so much as a phone number!).

Now, I’m not saying that those with and without disabilities can’t fall in love or just “hook up” with each other – it happens all of the time. However, it’s vital to recognize that the courting rituals at the shallow end of the dating pool are different for those with and without disabilities – and we owe it to ourselves, as those with disabilities, not to misinterpret friendliness and misguided flirtation as a greater interest than it usually is. Be aware that the rules are different in such superficial social scenes for those with disabilities versus those without, know the dynamics, and don’t let anyone be fooled by them – especially yourself.

As I tell my buddies with disabilities, You have a terrific chance toward dating women who you interact with every day, where there’s a real understanding and connection. However, when it comes to “getting lucky” via random, overly-flirtatious chicks sitting on your lap in bars and clubs, not so much!

Motivation X

By Mark E. Smith

We live in a time where it seems like self-motivation in America is at an all-time low – and, admittedly, I blame much of it on my own generation – those born between 1961 and 1981, known as Generation X. People who lived through the Great Depression and World War II knew the value of self-motivation, and Baby Boomers displayed a work ethic where they knew that living the American Dream required self-motivation to earn it.

Yet, many of us “Gen-X-ers” missed the course on self-motivation. To combat this shortcoming, we seemingly now require “motivational coaches” for everything that we should naturally be doing on our own initiatives, from how to excel in our careers to how to organize our closets. And, let’s be blunt, when we need a “coach” to motivate us to organize our closets, we have a huge deficiency on our hands – we’re truly failing in our potential.

Of course, reality television, a direct product of our generation, portrays a lack of self-motivation at its best – or, worst, as it is – with screaming “motivational coaches” on every television channel. I’ve watched NBC’s The Biggest Loser and thought, If you need someone literally screaming at you to jog on a treadmill, while you’re insisting that you can’t do it, you might as well pack your bags and go home. You’ve already lost the game – on TV, and in life.

What we, as Gen-X-ers – and those on The Biggest Loser! – are missing is that a foremost key to succeeding in life is this: No one should be able to motivate you more than you intrinsically motivate yourself.

Really, if it truly takes another person to motivate you to complete a task – albeit a hounding coach, complaining spouse, or yelling boss – you’re slacking in life, you’re failing in your potential. It’s a sink or swim world, and if you’re only willing to swim when others tell you to, eventually you will drown.

This fact – that true motivation only comes from within – is especially important when living with disability. By nature, people assume that because we have less physical abilities, less is to be expected of us. And, as a result, often not only don’t we have others demanding the best of us, but we also allow ourselves to fall into complacency – and when we’re already living in a culture where complacency is acceptable, we’re doubly dooming ourselves as those with disabilities. However, by taking absolute command of our lives through self-motivation – to such an extreme level that it defies logic at times – we’re equipped to not only succeed at what we wish, but also often succeed to astounding levels, well beyond others’ expectations, where no one can motivate us more than we intrinsically motivate ourselves.

My daughter recently proved the importance of self-motivation to me in her own unique way. She just finished the 7th grade as an A-student. Nevertheless, even with A’s in her classes, she closed out the school year by doing extra-credit. That’s a striking effort because it really defies logic – that is, if you already have the highest grade possible in a class, extra credit points are moot, so why do the extra work, right? What’s clear to me is that my daughter’s self-motivation exceeds logical expectations – it’s her internal drive that’s setting the standard that she’s living by. That is, the grading system isn’t motivating her; rather, she’s motivating herself.

When I was exactly my daughter’s age, I was in the full throws of learning how to live independently with cerebral palsy. And, while there were countless moments in my early teen years that taught me that, truly, all I needed to ever succeed in life was unyielding self-motivation, few lessons have stuck with me more than my simply pushing my manual wheelchair everyday as a developmental exercise in personal growth.

I’ve often spoken and written about struggling to use a manual wheelchair as an adolescent, where I reckoned that it would help develop my independent living skills via developing strength and coordination, that it took me years to go from being able to barely push across the living room to pushing down the street and beyond. But, it was pushing that manual wheelchair down the street that specifically taught me so much about the value of self-motivation, creating an internal strength that’s defined ultimate accountability within me till this day.

See, due to my cerebral palsy, even after a few years of daily pushing my manual wheelchair after school, the best that I could physically accomplish was one push at a time in a painstaking process. I struggled to get both hands on the wheels, pushed them with all my might, followed by my body going into spasms, where the wheelchair rolled to a stop, and I’d start the process all over again. As you might imagine, it was an excruciatingly slow process – foot by foot, for years – and it was even physically painful. Yet, not only didn’t I mind the hardship that I put myself through, but it actually inspired me because I recognized that some progress was better than no progress, regardless of any agony.

However, strangers who I encountered while I was out pushing were extremely troubled by the mere sight of me – some alarmed, while others were downright cruel, when they saw me struggling to propel my manual wheelchair along the sidewalk with such awkward body movements and so little progress. Many in cars driving by thought that I was in distress, pulling over to try to help me. Some people called the police, concerned that I had been abandoned, or escaped from a care facility. Kids taunted me, calling me retard and throwing rocks at me. And, I remember one incident when an elderly woman sprinkled supposed Holy water on me, thinking that I was possessed. Day after day, for years, I was questioned, dehumanized, and harassed by every type of person one can imagine. And, it made me feel undoubtedly embarrassed and humiliated at times. Yet, I never stopped going out every day after school and pushing my manual wheelchair, regardless of heat or rain, or how discouraging the world around me was. Yes, I felt like a spastic, rolling freak show much of the time; yet, I just kept at it, going out everyday to push my manual wheelchair – no matter what.

Looking back, I now understand why others were so alarmed, even cruel. After all, to most people, there’s no logical reason for a kid with severe cerebral palsy to be out struggling to push a wheelchair in the rain, for example, unless something was terribly wrong. Yet, what they didn’t understand was that not only was there nothing wrong with me, but that everything with me was actually right. I was building fortitude, self-reliance, and perseverance in ways that surpassed others’ understanding. In actuality, I was self-motivated to a point that defied ordinary logic – and that, in itself, perplexed people to the point of alarm. Not even the meanest drill Sargeant would demand that a 13-year-old with severe cerebral palsy go out and struggle to push his manual wheelchair, foot by foot, in the rain, while strangers embarrassed, humiliated, and, ridiculed him. However, I demanded it of myself – no one could motivate me more than I motivated myself.

More than any other life skill, self-motivation is the one that’s never failed me. When I was in my junior and senior years of high school, with little parental support to speak of, it was self-motivation that not only got me up each morning for school, but actually improved my grades to an A average. When I was 19, and started writing, with no formal education or writing prospects, self-motivation got me freelance work, a side career in writing that’s now lasted 20 years. When I went through college with a full schedule of classes, while working 35 hours per week, it was self-motivation that had me leaving the house at 5:30am and getting home at 11:00pm, to the point that I was urinating blood from the toll on my health, but I just kept going. When I packed up my family and moved entirely across the country for work almost 10 years ago, it was self-motivation that assured me that I could succeed. And, it’s self-motivation till this very day that allows me to not only live up to my potential, but to also excel even when others still count me out. Ultimately, such anecdotes demonstrate the core result of self-motivation: It keeps you in the game when everyone else might give up – including when they give up on you!

What’s amazing, though, is that there’s little that’s unique about my own record of self-motivation – we all have the same capabilities within, they just apply to different areas of our lives. It’s merely the question of whether we choose to access our intrinsic self-motivation? We often hear people say, I can’t get motivated; however, what they’re really saying is, I just don’t want to do it. How many people do we know who are dissatisfied with their current jobs, but aren’t looking for new ones or pursuing higher education, right? Or, how many people do we know with disabilities living far less independent lives than they are capable of? The list, unfortunately, can go on and on, where there’s nothing holding such individuals back but a lack of self-motivation. If we wish something, it’s ultimately solely up to us to make it happen – no one else.

Like a magic pill for success, self-motivation removes excuses from our lives – it makes us compelled to do what’s needed, against all odds, where we simply get the job done. It allows us to work harder and think bigger than many others, where we realize that our lives are like a garden, where the quality of the soil beneath the surface dictates the quality of the harvest. And, when we’re willing to make the effort to dig down within ourselves – that is, tap into unyielding self-motivation – the growth that we experience is exponential.

Certainly, we should be encouraged and inspired by others – they often set the bar for human potential, where if they can accomplish a feat, so can we. Yet, we must recognize that if we’re truly to succeed, especially in tough times, our drive must intrinsically come from within: Self-motivation. And, if in that process, the extents to which our self-motivation is questioned by others – where they are baffled by our efforts, thinking that we’re pursuing too lofty of goals or demanding too much from ourselves – then we know that we’re really on the right track, where we’re demonstrating that no one can motivate us more than we can motivate ourselves.

Unboxing It All

By Mark E. Smith

Between my pal, Drewy, and I, we hold the unofficial combined record for knowing the most messed up people with disabilities – or at least enough to keep the Dr. Phil Show booked with guests for a few years.

Now, when I note “messed-up people with disabilities,” I’m truly not being judgmental, but merely observational. We know more than one woman with a disability who’s a stripper, porn actress, or porn producer – and, let’s be blunt, that’s messed up. And, we know more than our share of men with disabilities who’ve done more drugs and lived a party life harder than Guns ‘n’ Roses did in the 1980s – which, again, is messed up.

What I must point out, though, is that it’s not that we seek out such individuals or befriend them – we most often truly just stumble upon them as part of the disabled community. For example, I was recently simply having dinner at a disability event, when a woman at another table of those using wheelchairs punched a gentleman at her table in the face, blood splattering everywhere, screaming at him for flirting with her wife, who was sitting at their table. Of course, I looked around like, Is this really happening? With my second thought being, Here we go again…. Therefore, in this observational way, there’s no shortage of messed up people with disabilities who we’ve encountered over the years.

However, where this conversation becomes of utmost consequence is in the all-important question surrounding “messed up” people with disabilities: Why are they messed up – or, as Dr. Phil puts it, dysfunctional?

There’s an undeniable undercurrent among both the mainstream and disabled community alike that people with disabilities are dysfunctional solely on the basis that – drum roll, please! – they have a disability. However, the rationalizations between the mainstream and disability community for how disability, in itself, fosters dysfunction are very different.

Interestingly, both the mainstream and the disability community see dysfunction among those with disabilities as a disability-related coping mechanism – or, a lack of coping, as it truly should be called. Yet, the rationales, again, are different. See, the mainstream gives dysfunctional people with disabilities a pass, generally thinking, Man, if I had a disability, I’d be messed up, too, implying that disability is so terrible that it’s a justification for any number of poor behaviors, as we see by how easy it is for those with disabilities to get free drinks offered to them by others at bars, to name one example.

On the other hand, the disability community looks at those with disabilities who are dysfunctional, and says, They can’t cope with disability, so that’s why they’re all messed up, implying shortcomings in individuals who seemingly lack a sort of fortitude toward living with disability.

In these ways, both the mainstream and disabled community make disability a scapegoat for dysfunctional behavior, blanketing it as the root cause of ills in one’s life.

Yet, how do any of us really know why any individual with a disability is dysfunctional? After all, many without disabilities are dysfunctional, and many with disabilities lead enormously healthy, successful lives – so who’s to assume that disability inherently causes one to be dysfunctional?

The unquestionable answer is, we simply can’t – and shouldn’t – assume that disability inherently causes one to be dysfunctional. What we know is that there are a lot of emotionally and mentally troubled people in the world, some of whom happen to have disabilities, but many who don’t. And, while some people with disabilities are troubled by disability, itself, to the point of dysfunction, many are unquestionably troubled by many other factors in their pasts and presents, where disability is the least of their innerturmoil. This is such an important realization because when we look at “messed up” people with disabilities and strictly attribute their dysfunctions to disability in itself, we’re discounting the entirety of individuals’ life experiences. Using one of my previous examples, can disability cause a young lady to question her identity, to the point of acting out in dysfunctional ways? Sure. However, there’s arguably a better chance that a dysfunctional childhood, other trauma, or mental health issues contributed to her destructive present paths, that even if she didn’t have a disability, she’d still be living a dysfunctional life of, say, pornography.

And, it’s along these lines that my friend, Drewy, asked me a brilliantly insightful question: How does a mental health professional distinguish between disability-related dysfunctions and other life-experience dysfunctions?

That’s a tough, tough question – and the answer is truly the key needed for those with disabilities who are dysfunctional to get on the road to recovery, so to speak. There has to be an inventory process that starts with the individual, where emotions are unboxed one by one, and causations are identified. Some causations may be disability-related, while others may not; but, they must all be individually identified and addressed.

I remember many years ago, when I was 21 or so, and I was emotionally unsettled when my girlfriend and I first moved in together – I felt oddly insecure about the life change. Was I feeling vulnerable because she was going to see my disability in full effect, or was I feeling vulnerable because I came from a very dysfunctional childhood, where the only adult relationships that I knew were nightmares? Or, were my feelings a bit of both experiences? And, so I went through my own “unboxing” process, figuring out that while questions toward how my disability might impact my relationship could be a valid issue for some, it truly wasn’t for me; but, my really impacting issues surrounded my fears toward how to build a healthy relationship when I’d never really seen one. My own dysfunction, then, wasn’t disability related, but childhood related – and once I recognized that, I was on my way toward doing what it took to learn how to form lasting, healthy relationships.

When we witness “messed up” people with disabilities, let’s not simply write off the dysfunction as a consequence of disability – such an assumption is discounting and flip. Rather, when we witness dysfunctional people with disabilities, let us remember that beyond disabilities, we’re all people first, where there aren’t easy answers to dysfunctional behaviors, but that there are often complex causes that need addressing – many that have nothing to do with disability at all.

The Power of Wakes

By Mark E. Smith

People are very kind in noting how they’re inspired by my spirit, sometimes asking how I stay so passionate, inspired, and fired-up about life? Sometimes they’re blunt enough to note that living with a disability surely isn’t easy, that my career in itself, dealing with rightfully frustrated consumers, can’t be a pleasant job at all times, either. And, when they know a little bit about my childhood, coming from the wrong side of the tracks, they’re even more intrigued, wondering how do I stay so eternally positive and inspired?

My answer to the question is a simple one: I’m constantly on the lookout for inspiring people, circumstances, and teachings in the world around me – and I follow their leads. I’m humbled and inspired by others around me on a daily basis, and it’s their efforts that encourage me to live my best.

Years ago, when I was routinely boating in the rough waters of the Pacific Ocean, I had one of the smallest boats in the recreational fleet during salmon season each year. And, when I headed out from the San Francisco Bay, under the Golden Gate Bridge as a lone boat, it was a brutally-rough ride, getting pounded by the very tumultuous waters where the ocean meets the bay – an area called the “Potato Patch.” However, I learned that if I tucked my small boat in the wake behind larger boats, the ride was a lot smoother – the larger boats broke the waves for me, clearing the path. By simply following boats bigger than mine, I made greater headway.

My everyday life today is just like my time spent boating on the Pacific – I’m always on the lookout for those greater than me to lead the way, true inspirations to help me grow as a man, father, friend, colleague, and businessman. And, there are no shortages of inspirations everywhere that I look. I’m forever impressed by witnessing everyone from strangers in public demonstrating pure kindness, to colleagues making honorable decisions – and countless examples in-between – all of whom inspire me to strive toward excellence.

Indeed, when we’re on the lookout for inspiration, it’s impossible not to find it in the everyday greatness of others, and that makes us remarkably optimistic about what each of us can accomplish. However, what’s interesting is that so often our culture tells us to look at the rich and famous or so-called accomplished as inspirations, but that’s rarely where our true, lasting inspiration is found. Rather, our true, lasting inspiration is usually found in those around us every day, those who are doing the extraordinary with no fanfare, those who do right simply because it’s their nature.

I’ve had the chance to get to know a gentleman who works at a Subway sandwich shop near my home. And, in talking with him, I learned that he lives with his girlfriend, and has assumed the role of father figure to her two children. Wanting to build a life for his girlfriend and her children, he takes three community college courses per week at night, bringing his books to work at the Subway shop each day to study when there are no customers. Having been an English major, myself, it’s been my privilege to meet him at the Subway shop one evening per week, and help him with his formal papers. And, I look at this gentleman and think, Man, everyone should learn from this guy’s initiative and dedication! After all, how can one meet a guy who works at Subway by day, probably making $8 per hour before taxes, to support his girlfriend and her kids, while attending college at night to better himself, and not be inspired by his efforts of doing whatever it takes to move his life forward? He’s been very gracious in noting my inspiration to his life, but I truly don’t hold a candle to his inspiration – his unyielding dedication shows me week after week how much more we can all achieve if we simply apply ourselves, building success from the ground up.

At this writing, I’m in the middle of working 14 days straight – that is, working last week, having worked the Abilities Expo all weekend, getting home late Sunday night, then getting in my office Monday morning by 7:30am, working the present week as usual. And, when I got home from work Monday evening, 8 days into it, I was as tired as I’ve ever been, just wanting to go to bed. Yet, I knew that due to being on the road, I hadn’t worked out in my gym in 4 days. Sure, dead-tired, I could have gone to bed, easily justifying not working out, reckoning that both my body and mind just needed rest. But, then I thought of my childhood friend, Stephen Wampler, who has severe cerebral palsy like me, and is currently preparing to climb El Capitan, the granite cliff in Yosemite, planning to pull himself up 6-inches at a time with a special harness, where he’ll spend an estimated week doing it, specifically to raise money for a camp for kids with physical disabilities. And, he’s training like a maniac for the climb, where we all know that he will make it to the top, no matter what.

As I rolled by the closed door to my home gym, on my way to my bedroom – again, where I just wanted to go to bed! – I reminded myself that Steve won’t give up no matter how tired he gets, so why should I take the easy way out, and go to bed when I had every ability to push myself further? Of course, following Steve’s lead, I changed into my workout clothes and hit the gym. See, when you know of inspirations like Steve, it’s all but impossible not to live your best, so I’m always drawing upon others as inspiration, especially when I feel like I’m on the verge of taking the easy road instead of digging down and pursuing excellence.

While I’m constantly on the lookout for inspiration and use it to enhance my life, many around us are oddly blind to inspiration, choosing to dwell on the negatives in their lives, ignoring the empowerment to be gained by acknowledging the inspiration in others. Middle management in corporate America is a great example of such self-defeating, oblivious cynicism because you run into so many disgruntled, jaded employees – a striking phenomena not lost in in popular culture, where media ranging from comic strips to sitcoms illustrate life in a cubical that’s somewhere between boredom and insanity. However, where the real issue resides is in a lack of inspiration and admiration of others. After all, in many company cultures, when someone is promoted or gets a better job, the coworkers are often more inclined to whisper back-stabbing sentiments about the person rather than celebrate his or her accomplishments. Yet, when someone moves forward in life, what we really should do is be inspired by his or her accomplishments, admiring the effort, and learn from his or her success – that is, we should be thrilled to witness excellence because it’s a model that helps us grow. If she did it, so can I! is the spirit with which we should live.

Disability culture can be a lot like working among middle management, where some with disabilities can be quicker to criticize others than to be inspired by their accomplishments. For many years, I’ve known a strikingly beautiful woman who uses a wheelchair and is married to a wonderful man who doesn’t have a disability, and they have several terrific kids – they’ve worked hard, made responsible decisions, and live with uncompromising integrity. Still, to my dismay, others have flung criticisms at them since the day that they were married: She only married him because he’s able-bodied; he only married her because he could never get such an attractive woman who was able-bodied; and, on and on – horribly jealous, spiteful words coming from the disability peanut gallery of individuals arguably miserable in their own lives.

However, rather than criticizing the couple, the cynics ought to find inspiration in them, learning how to achieve such a loving, supportive relationship in their own lives. I look at the couple and I’m truly touched, not only in awe of their accomplishments, but I’ve sought to better understand the traits that allow them to retain such a healthy, fulfilling relationship, so that I can apply them to my own life. Again, when we acknowledge others’ greatness, it presents us with our own opportunities to learn and grow – that is, it allows us to be inspired.

This concept of recognizing the countless forms of inspiration in the everyday people around us, and using them as guiding stars, is by far among the most effective ways to motivate and improve our own lives. The fact is, if someone else has accomplished any given goal, it typically proves that we, too, can accomplish it – and that’s the true spirit of inspiration. The world is a mirror, where when we see the best in others, we’re also witnessing the potential in ourselves. Look for inspiration in those around you, and strive to learn from the best – for, when you do so, you’ll soon enough propel yourself from following their wake, to creating your own.

Never In-Between

By Mark E. Smith

I had a lot of respect for Vic – that is, until he downed a fist full of muscle relaxers on December 23, 2009, at age 45, dying two days later in the hospital, surrounded by his horrified family and friends on Christmas Day. Now, I’m just sorrowful.

The back story to Vic’s suicide would have made the actual event less surprising – but, Vic had to throw in a final torturous twist to those who loved and admired him. See, it was no secret that since the car accident that left him a quadriplegic at age 18, Vic wanted to die – at some points more than others, where lows in his life were punctuated by suicide attempts. And, in that context, Vic’s suicide would have been viewed as his finally succeeding at his long-time wish – popping a bottle of pills, checking out once and for all. End of story.

But, in the time just prior to his suicide, Vic Chesnutt made it known that he was finally past wanting to die, that one of his latest songs, “Flirted With You My Whole Life,” was his letter to the world that he finally wished to live, that suicide was behind him. And, the lyrics read true to his word:

I am a man
I am self-aware
And everywhere I go
You’re always right there with me

I’ve flirted with you all my life
Even kissed you once or twice
And to this day I swear it was nice
But clearly I was not ready

When you touched a friend of mine
I thought I would lose my mind
But I found out with time that
really I was not ready, no no

Oh, Death
Oh, Death
Oh, Death
Really, I’m not ready

In a November interview, just weeks before his suicide, Vic discussed his now-prophetic song with NPR: “Well, it occurred to me that I would like to sing this song where, at the first half of it, you think I’m singing it about a lover, and then it becomes obvious that I’m singing about death. Death is my lover…. You know, I’ve attempted suicide three or four times. It didn’t take. And, this is really a breakup song with death.”

So, Vic made the rounds in summer and fall 2009, describing himself publicly as a man who’d learned his lessons and grown – and he was arguably at his peak in the music industry. No, you may not have heard of Vic Chesnutt, as he never achieved Billboard-type success or radio airplay in rotation. But, for 20 years, Vic was a musician’s musician, idolized by contemporaries like Michael Stipe of R.E.M., Madonna, and even alternative bands like Garbage. As an indie artist, Vic was known for his true talents as a writer, singer, and musician with longevity – which commands more respect among many in the music industry than one with a sole Top-40 hit. And, Vic was a relentlessly-working musician, always writing, always recording, always performing. As a lyricist, his work wasn’t from the soul, but it was the soul, itself – the trials of humanity at its core.

Despite Vic’s professional success, many still believed that Vic’s personal life was tortured and tragic, his disability a cross to bear, a seemingly horrible plight that they have ultimately used to justify his suicide. One of Vic’s fans wrote, “I am not sure that Chesnutt’s death is tragic. Maybe it was his life that was tragic. But before he left, he blessed us with a poignant firsthand picture of that tortured existence. Anyone who would judge his last act should realize that they never walked in his shoes – or sat in his chair.”

I’ve known many who have sat in wheelchairs as Vic Chesnutt did – some with physically and socially tougher plights than his – and they didn’t take the sorrowful way out by overdosing, devastating all around them. Why, then, did Vic choose at this point in his life to commit suicide, once and for all?

My speculative answer from what I knew of Vic, from what I’ve since learned of Vic, and from what I’ve witnessed and experienced in my own life, is that I believe that the unique pressures of living ultra-successfully with disability caught up with him, where he wasn’t able to cope with the extreme fluctuations in his life. See, when you have an exceptional level of success like Vic did while living with a disability, it can become a tale of two cities. On the one hand, publicly, everyone’s telling you that you’re a huge success and inspiration, putting you atop the world. Yet, on the other hand, you’re a real person, with real-life issues toward health, relationships, and finances. And, when all isn’t kept in balance, you can go from extreme highs to extreme lows in literally a matter of moments – in the time it takes to go from on-stage in front of a cheering crowd to a lonely hotel room where you’re left to face the realities of your everyday life. Truly, when you have such extremes in life – and you’re emotionally unable to center yourself – it’s just as easy to get consumed by the lowest of the lows as the highest of the highs, where the healthy middle-ground needed to survive doesn’t exist.

And, that’s where the tragedy in Vic Chesnutt’s life occurred – not in his literal disability, but in his inability to find that middle ground of understanding and comfort in life as a whole, where, by all accounts, he lived a tormenting oscillation between the highest heights of elation in his work, and the deepest plunges of despair in his personal life, with no middle ground to just be at peace.

Indeed, Vic left us with a remarkable catalog of the human experience as voiced through his music. And, maybe as some have pointed out, his suicide – that is, his final choice – isn’t to be judged by anyone. Yet, I can’t help but think that Vic called it quits too soon, never to find his middle ground, as when we find it, we realize that while life can be full of ultra-highs and super-lows, all of it is of value, never to be squandered, and relished everywhere in-between.

Author’s Note:
I wish to include the following two videos of Vic that personify him better than any writing can. The first video, “Everything I Say,” demonstrates the Earth-moving force that was Vic. The second Video, “Flirted With You All My Life,” is, in many ways, Vic’s prophetic letter to the world regarding his ultimate act of suicide. When you watch the videos, I think you’ll be left speechless, simply wondering what many of us wonder: How does such a life force just cease? …Or, maybe it doesn’t.

Shooting Hoops in the Rain

By Mark E. Smith

One of my favorite quotes is, “The true measure of a person’s true character is the effort that he or she puts forth when no one is looking.”

I often chuckle to myself when people note that they know how busy I am…. In fact, very little of what I do is ever publicly seen or known by even those close to me. No, I’m not bragging that I’m even busier than I appear, but despite what’s seen by others, much of my work is accomplished very quietly, in my solitary offices at work and home, helping individuals directly, behind the scenes. After all, when someone needs our assistance, we shouldn’t call out the trumpets, broadcast on the Internet that we’re helping someone, then run to our bosses for praise. Rather, when someone needs our assistance, we should quietly, immediately help them, understanding that our only reward is in the difference that we hopefully make in that one individual’s life. Whether anyone knows of our efforts is meaningless, and our only concern should be, Did I do everything that I could to help that person, and did I live up to my fullest potential in my servitude to others? The objective, then, isn’t to “look busy” to your boss or others, but to accomplish true achievements.

Much of my work ethic of giving my all when no one’s looking truly stems from my own disability experience. Much like you may have experienced in your own life with disability or other challenges, the foremost hardships of my living with cerebral palsy haven’t been the obvious ones that most people publicly see – that I can’t walk, that I have muscle spasms, and so on – but my far more intimate everyday struggles that no one ever sees, as with my simply struggling to open a beverage in my kitchen at night, or fighting to put on my shoes each morning.

However, what I’ve learned from my own life is that addressing such private struggles – when no one is watching – is where true tenacity and dedication are formed. Put simply, how we react to our disabilities when no one is looking is our true character, our authentic self – and a fundamental toward success in all of life.

I’ve known far too many individuals with disabilities who bask in the limelight, glad to portray a heroic persona in public, thriving off of recognition as “overcomers.” Yet, behind closed doors, their lives are a mess, privately filled with bitterness, defeat, depression, and addictions. Their heads are held high when others are watching, but all crashes when they’re alone. In ways, disability experience is a lot like celebrity, where what’s publicly seen isn’t always what’s privately lived.

Yet, if one’s going to truly succeed with disability, what’s privately lived must be paramount to all other views. Again, our true character is proven when no one is looking. It’s easy to accept disability when someone is telling you that you’re an inspiration. Yet, it’s a far more honest reality – dare I say, brutal reality – when it’s just you, in your kitchen, struggling with all your might for twenty minutes to open a beverage. How do you feel in those circumstances? Are you heroic for yourself, or do you become quickly discouraged and defeated, crumbling into a ball of self-pity?

If you’re playing your disability A-game, you should feel more energized and inspired when facing private struggles than if you were on television with millions of people applauding you for your inspiration. See, when you have the tenacity and dedication to tackle a personal challenge with all of your might when no one’s applauding – because you only want the self-satisfaction of giving life your all – that’s the character that true heroes and champions possess.

In fact, one might compare being a champion at disability like being at champion at sports. Millions of teenagers every year dream of becoming a sports champion and hero. However, the mere handful who have achieved such status over the decades all shared the same trait of having practiced their game on a lonely court or empty field long after everyone else went home, year after year. Basketball Hall of Fame player, Larry Bird’s, ritual as a teenager was shooting 500 baskets before school each morning; then, he shot baskets in-between classes; and, then he shot baskets late into the night. What’s more, Larry’s home life during that time was a disaster, living in poverty, his father an alcoholic who committed suicide. But, when it came to basketball, Larry didn’t need a screaming crowd, encouraging parents, or a sunny day; all he needed was a basketball, a hoop, and his tenacity and dedication. Lots of Larry’s peers had talent on the basketball court, but none had Larry’s dedication when no one was looking – and that solitary dedication ultimately took him all the way to the Hall of Fame.

Succeeding with disability is no different. The public can commend you, your family can encourage you, but if your strength doesn’t come from within, where you’re willing to work to exhaustion emotionally, mentally, and physically to better yourself when no one’s looking, day after day, your success will be limited. You need to out-shoot Larry Bird by practicing morning, noon, and night in your own life to succeed with disability.

I’m not embarrassed to tell you that among my own foremost solitary challenges is the commode. See, I have a very hard time transferring from my wheelchair to the commode, then back again. It’s been a lifelong challenge, one that I’ve battled alone since I was a teenager. Truly, among my foremost goals everyday is a seemingly simple but profound one: to “beat the commode,” successfully transferring on and off of it. And, let’s face it, when one of your foremost challenges is to simply perform a commode transfer, that’s living with true authenticity, a challenge where most reckon you’re better off tackling it alone!

These days, fortunately, I win more than I lose, but that transfer remains harrowing, and gets the best of me from time to time, tossing me onto the floor like an unworthy opponent, leaving me to climb back into my wheelchair in defeat, bumped and bruised. In my mind, though, that transfer is among my greatest ongoing inspirations, reminding me to never be intimidated, to never give up, to apply even more tenacity when times get tough. And, I tell myself, Dude, if you can accomplish that transfer, everything else in life is a piece of cake.

The mobility industry, public speaking, and writing are all challenging and rewarding for me; however, when it’s just me addressing my disability-related challenges alone, that’s where life really demands that I prove myself with authenticity. Indeed, it’s that sense of solitary accomplishment that we get from tackling very personal challenges when no one is looking that builds our true confidence. And, when you strive to tackle them, without any fanfare or overt reward, when no one knows of your vying and victories but you, that’s what builds true character, that’s what forms a true hero, that’s living with authenticity. An old boxing saying goes, champions are made outside of the ring.

When it comes to living with disability, be that champion outside of the ring, be that kid shooting hoops alone in the rain, be the one never defeated by the everyday challenges of disability but motivated by them. Forget about everyone else – you don’t need their recognition to be your best! – and truly live your tenacity, dedication, and authenticity every day, not just surviving with disability but to truly thriving. That is, never stop showing your disability the character that you’re made of, especially when no one’s looking.

Echoes of Willowbrook

By Mark E. Smith

When one discusses “institutions for those with disabilities,” Willowbrook State School must come up. From 1947 to 1987, Staten Island’s Willowbrook was among the nation’s largest facilities for children with disabilities – and, ultimately, among the most horrific. In a February 1972 article, Time reported, “[Willowbrook] resembles Sartre’s vision of Hell. Bare and high-ceilinged, its walls covered with flaking green paint, the room is redolent of sweat, urine, excrement – and despair.”

In the 1960s, children with disabilities at Willowbrook were intentionally given hepatitis as medical experiments, and by the 1970s, they were subject to unimaginable neglect and abuse. In 1972, a then-29-year-old Geraldo Rivera performed an undercover news investigation of Willowbrook that awoke our nation, showing how the institution housed 5,000 children and teens in a facility for 2,000, in unimaginably repugnant conditions. He showed how residents were neglected, treated literally as caged animals in some cases. He showed proof of ramped physical and sexual abuse by staff members. And, he showed how some of the residence, placed there as infants by scared or coerced parents, had absolutely no reason to be there – that is, they were children with misunderstood disabilities that didn’t effect their cognitive skills in any way.

As Willowbrook’s population was described in the Time article, “By night, the children, many of whom have physical handicaps as well, sleep in closely spaced cribs. By day, they sit strapped into special chairs, recline in two-wheeled wagons that look like peddler’s pushcarts or lie listlessly on mats on the floor. Some of the youngsters weep or grunt unintelligibly; most make no sound at all. Children with severe physical handicaps but normal intellects share the accommodations; families unable to care for them have made them wards of the state.”

In the mid 1970s, based on the media’s exposure, and subsequent public outrage, New York state began cleaning up and shutting down Willowbrook. But, it was too late – countless children died from neglect, and those who survived were so underdeveloped and traumatized that most were unable to ever lead normal lives, merely transferred to new facilities, where very few Willowbrook residents are alive today.

Willowbrook, in fact, was such a horrific case study, that the federal government enacted the Civil Rights of Institutionalized Persons Act of 1980, hopefully ensuring that another Willowbrook could never occur. And, in 1987, Willowbrook closed its doors permanently.

Here we are some 21 years after the last doors of Willowbrook shut, and while literal facilities like it no longer exist – Gothic, echoing institutions now replaced by contemporary “centers,” “homes,” and “schools” – the children still do exist, only in a new generation. Across this nation, children with disabilities remain “institutionalized,” tucked away from society, where we know that neglect and abuse remains, as with the ongoing reports on Texas’ state “schools” for the disabled, where incidents have been most notably flooding out of its Denton facility, to the sum of 10 deaths and 60 questionable injuries of residence in the last nine months alone. To paraphrase what a retired facility director recently told me about care facilities in general, any time that there’s a large group of residents with complex needs, cared for by low-paid, unskilled workers, with high employee turn-over rates, and a lack of family involvement, residents are at tremendous risk for abuse. From Willowbrook to Denton, the locations and generations change; however, unspeakable crimes against our society’s most vulnerable – children with disabilities – remain.

Now, the fact is, not all care facilities are bad, and many provide absolutely necessary long-term care for those with multiple disabilities, some well beyond the care that even the most dedicated parents and in-home caregivers can offer. Surely, such facilities are needed and they are unquestionably humane, ensuring the health and safety of residents.

However, as someone who’s visited several “schools for the disabled,” what weighs heavily on me are the children who I’ve seen who simply shouldn’t be there – that is, children who are “institutionalized,” not based on disability, but based on what can only be explained by the inexcusable lack of accountability and humanity of some parents – and a system that supports such poor behavior.

The fact is, in every facility that I’ve visited, I’ve seen children, adolescents, and teenagers with no cognitive disabilities – that is, they have no mental disabilities whatsoever – where many of these children had non-critical medical necessities, either. Some of the children had cerebral palsy, some with muscular dystrophy, and others with forms of dwarfism – not medical reasons to “institutionalize” children under any circumstance in today’s world. Of course, I’ve confidentially asked workers why certain children were in a given facility, why a child with cerebral palsy, with no cognitive difficulties or complex care needs, for example, would live at a “school” with others of multiple disabilities, surrounded by chaos, isolated from a normal childhood? “I’ve had a parent tell me flat-out that her handicapped kid didn’t fit with their lifestyle,” one worker explained to me.

It’s striking to think about the potentials being lost – and the exposure of risk – from physically disabled children being “institutionalized.” In 2008, it needs no explanation that children with physical disabilities live fully-integrated, productive lives, where they attend public schools, graduate from college, and go on to successful careers. What’s more, there are more in-home support resources for families with a disabled child than ever before. There’s simply no reason why any parent or culture should allow a physically disabled child to whither in an institution – all potential and dignity stripped – in the United States today.

Indeed, this is a very personal subject to me, both as an individual with a disability, as well as a parent. As an infant with a severe disability, in the era of Willowbrook, my course was set by my own doctors for institutionalization. No, my parents weren’t educated, or sophisticated, or even emotionally healthy; however, they were decent enough people at their cores to know that under no circumstance did you place your physically disabled child in an institution. It wasn’t that my parents were martyrs, or saints, or extraordinary in any way; rather, they simply had basic humanity.

And, I have to ask, where’s the humanity in the parents today who have so much more going for them than those families of 40 years ago facing raising a child with a disability, yet, they’re still placing their physically disabled children in institutions? How does any parent explain to their child with cerebral palsy, muscular dystrophy, or dwarfism that his siblings get their own bedrooms, get to attend school, and get to celebrate Thanksgiving with Grandma and Grandpa, but he’ll be living in a facility three states away with strangers caring for him, surrounded by those with multiple disabilities, likely neglected and abused at some point?

Typically, such parents answer the question by convincing others that placing their child in an institution is their only choice, that it’s unimaginably impossible to care for such a child. However, such justifications by parents is a complete and total self-serving cop-out, a shunning of their obligations, a lack of parental accountability. As I always point out, if it’s so impossible for parents to care for physically disabled children, how are hundreds of thousands of parents doing it every day?

With humanity and accountability – that’s how. In a poignant twist, I’m not a parent who has a child with a disability, but I am a parent with a disability who has a child. And, as a father, I can’t fathom doing any less than whatever it takes to care for my daughter in the healthiest forms possible – that’s my obligation. In this way, I can unquestionably empathize with the anguish of parents who must put their children with multiple disabilities in care facilities, while I conversely have no capacity to understand how any parent of a fully-cognitive child with a physical disability could elect to effectively institutionalize them? Again, my daughter doesn’t have a disability, but even if she did, the rules wouldn’t change: As a parent, my role is to treat my child with unyielding dedication, fostering all of her potentials in life – regardless of disability or otherwise. And, it’s clear that some parents need to place the welfare and upbringing of their children above their own wants, looking at a child with a disability not as a burden, but as just that, their child.

Supposedly, the doors of Willowbrook closed 21 years ago. However, clearly, they still haven’t been entirely locked.

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.

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.

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.