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.

Inadequacy

By Mark E. Smith

Often, those in-the-know in the wheelchair industry – clinicians and such – ignore my entirety, and hyper-focus on the shaft of my joystick, transfixed by its abnormalities. They’re bold enough to ask me why it’s so short, without a big knob? They stare at it, sometimes pinch it between their fingers, roll it around, and it makes me uncomfortable – violated. I tell them that it’s been that way since I was a child, that it’s easy for me to grasp, that due to my cerebral palsy, a big knob would be too cumbersome. But, they never seem to agree, all but mocking my physicality, insisting that I should have a big knob above all else. Apparently, somehow, if I just had a big knob, it would make them feel better – inside.

Capturing Frida Kahlo

By Mark E. Smith

When a well-known disability figure died a while back of “cardiac arrest,” it seemed a shock to many outside of his circle. After all, he seemed the portrait of health and an inspiration to many. However, upon his sudden death, most who knew him on a more personal level understood that cocaine and methamphetamine ultimately contributed to – or caused in the immediate – his death, that his passing wasn’t truly a surprise or a mystery. See, his foremost coping mechanism for some 30 years was hardcore drugs – and a lot of us witnessed it first-hand at times. Yet, the headlines both in and out of the disability community never mentioned the lifetime of drug addiction or almost certain overdose. Rather, the headlines read, “Disabled Icon Passes Away…,” going to note the heroic, awe-inspiring nature of his life. It’s as if the three dimensions of his life – the good, the bad, and the ugly – were selectively erased by death, where only sainthood remained in print.

In death, just as within life, others projecting sainthood upon those of us with disabilities truly ties into stereotypes, where the general public sanitizes our lives to make themselves feel better. After all, disability can be painful for outsiders to witness, where they want to avoid its realities – and there’s no better way for a outsiders to avoid the realities of disability than by convincing themselves that people with disabilities are doing fantastic, even when some aren’t.

Artist, Frida Kahlo, is arguable the best example of how the mainstream takes the depth of disability and human experience, and gentrifies it to an inspiring story fit for iconic status and the silver screen – even when it isn’t – simply to make all feel better.

Frida Kahlo, born in 1907, outside of Mexico City, is the most celebrated female painter of all time, with her work now fetching $10-million per painting. At the age of 6, Kahlo contracted polio, recovering with a limp. While studying pre-med at age 15, Kahlo was in a terrible bus accident, where a metal rod pierced through her abdominal region. Kahlo spent a year in bed, her body encapsulated in a cast – and it was at that point that she began to oil paint.

Kahlo’s painting were of self-portraits and still-life, primarily painted on tin, in a votive technique practiced by Mexican street artists. And, it was painting that brought her and renown muralist, Diego Rivera, together, married in 1929, with Rivera 20 years her senior.

At the time, Kahlo was mostly known as Rivera’s wife, with little recognition toward her artwork. Rivera, on the other hand, was an internationally known painter, political activist – and womanizer. And, Kahlo was loyal to Rivera till no end, following him wherever his career took him, sharing his political beliefs, and even forgiving his adulterous affairs, right down to the one with her own sister. Meanwhile, Kahlo underwent over 30 surgeries, and even had a lower leg amputated. Yet, through all of this, Kahlo painted 143 paintings, many depicting pain, and 55 were self-portraits, including reflections of her disability and chronic suffering. Kahlo wrote, “I never painted dreams. I painted my own reality.”

Kahlo died on July 13, 1954, formally reported as due to health complications. Internationally, not much was known about Kahlo till the 1970s, when Mexican-American painters discovered her work as inspiration, and in the early 1980s, the media latched on to the story of “Frida Kahlo, the heroic female painter who overcame so much to pursue her art despite disability and male oppression.” Magazine and newspaper articles were written, as were biographies. Then, in the 1990s, exhibitions were held, paintings sold to celebrities like Madonna for $1-million, and by the early 2000s, movies were made. Today, Kahlo is among the most revered painters of all time, where her paintings are now priced with Picasso’s, and countless merchandise – from screen-printed T-shirts to children’s books – portray her as among the greatest heroines, a saint in the minds of many.

However, where Kahlo’s public persona stops today isn’t where the real Frida Kahlo’s entirety stopped during her lifetime. Filtered from the popular articles, biographies, and children’s books is a three-dimensional Kahlo, one where far more human flaws flourished well beyond disability, where her now-described heroic life was anything but heroic.

By all accounts, Kahlo was obsessed with Diego Rivera, where despite his attempts to leave her, she used every means to keep him. Kahlo’s close friend, Dr. Leo Eloesser, stated that of the over 30 surgeries that Kahlo endured, many were unnecessary, merely ploys to retain Rivera through sympathy, where Rivera was actually astoundingly loyal when Kahlo seemed in need. Kahlo was also a lifelong alcoholic and drug addict, fueled with constant rage, attempting suicide several times. And, as a proclaimed communist, Kahlo supported and admired Stalin and his regime at the time when Stalin was killing millions (she was so enamored with Stalin that she painted “Stalin and I,” a self-portrait of herself and Stalin). What’s more, when Leo Trotsky, second in line to Stalin, was expelled from the Communist Party and deported from Russia, Diego Rivera provided him exile in the Kahlo family home, where Kahlo began an affair with Trotsky. Yet, she then turned upon Trotsky due to his opposition to Stalin, and upon Trotsky’s assassination, Kahlo publicly denounced her lover (who was just one of many of Kahlo’s affairs, including a bisexual affair with entertainer, Josephine Baker). Lastly, even Kahlo’s death in 1954 has been sanitized in popular culture, where it’s rarely mentioned that she committed suicide after years of being bedridden due to drug abuse.

Indeed, Frida Kahlo seems a tale of two people when we know the facts: A heroic overcomer of disability who created great art while in the shadows of a philandering husband, or a drug-addicted manipulator, whose inability to cope led to her suicide. Yet, it’s only the first portrayal – inspiring heroine – that people want to know. Why is that?

Again, because it makes them feel better, that’s why. As a culture, we want disabled heroes and heroines, and we’re willing to omit those character traits that don’t fit the mold – and in Khalo’s case, there were many. In the public process, however, of sanitizing disability experience, the entirety of the individual is removed. Much like many other great artists, Khalo was both a saint and a sinner, and just so happened to have a disability. Nevertheless, if we are to celebrate the disability, then the public dictates that there’s no room for the sinner on the page – just sainthood.

No, I don’t know how my acquaintance or Kahlo wished to be remembered, but I trust that they lived all parts of their lives – including the terrible – with some reason and purpose. And, the biggest tragedy in their lives may not have been their deaths, but the loss of valuable lessons that could have been learned from the troubled parts of their lives that most will never know – the selectively forgotten.

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.

Protesting Oneself

By Mark E. Smith

It’s intriguing – and bizarre – how some within the disability community are appalled by the concept of “disability awareness programs,” going as far as to belittle their peers with disabilities striving to raise the public’s understanding toward living with disability. There are even groups with disabilities who literally protest others with disabilities for engaging in disability awareness programs.

Now, you may be logically wondering why some with disabilities would criticize and protest others with disabilities for striving to raise awareness? After all, doesn’t disability awareness benefit everyone, including both those with and without disabilities?

Of course it does; but, let me explain the critics’ argument because their position has some merit – that is, until we analyze the entire picture.

I agree whole heartedly with the critics that I cannot teach anyone what it’s like to be me – that is, one with a severe disability. Through the various disability awareness programs that I’m involved in, I can express to non-disabled individuals a bit of what it’s like to have a severe disability, but they can’t possibly understand the true day-in, day-out physical, emotional, mental, and social impacts that living with a disability entails. And, this fact holds true for any of our understandings of other groups beyond which we belong. For example, I know of the struggles that many who are gay can face because I’ve been made aware of the issues through reading, hearing, and meeting those educating others and raising awareness on the topic. However, as a straight man, I truly have no idea what it’s like to be gay in America, as everyone has always supported the fact that I’m heterosexual – that is, I know of the struggles that one can face being gay, but I can never really know what it’s like to literally be gay since I’m straight, and my sexual preference has never been questioned or condemned by anyone.

It’s this issue – that we can’t literally teach others what it’s like to be us – that the critics argue makes disability awareness programs unsuccessful. However, the critics take it one notch further – they actually think that disability awareness programs diminish others’ views of living with disability, making our lives appear as frivolous. After all, they argue, if you place an able-bodied kid in a wheelchair, they turn it into fun – and there’s nothing fun about living with a disability. According to the critics, then, disability awareness programs are nothing more than a mockery of disability experience, a modern-day freak show for others’ entertainment.

However, where the critics wholly miss the target is that disability awareness programs aren’t about making strangers “disabled”; rather, disability awareness programs are simply about increasing awareness. The fact is, as disability educators, we can’t literally make able-bodied people disabled, and, therefore, of course they’ll never understand the whole experience. However, what we can do is raise their awareness of disability in general, in engaging ways, through exposure to those with disabilities – and that, in itself, is of vital importance. See, as humans, we fear the unknown, and when it comes to understanding others who are diverse from us, the unknown breeds apprehension, ignorance, and stereotyping – none of which we wish directed at those of us with disabilities. The only way to overcome this is through making others aware, even in the smallest of ways, that people with disabilities are simply people, too. And, it works, where an able-bodied person’s positive experience in learning about disability almost always remains with them as they go out into the world. Sure, having able-bodied kids play wheelchair basketball as a disability awareness lesson seems frivolous compared to our actually living with disability; however, the process allows the children to intrinsically build a better comfort level, seeing a wheelchair not as an unfamiliar, frightening device, but just as a wheelchair – and, as a result, they’re more likely to see people who use wheelchairs in a more accepting light. It’s just common sense: Awareness helps create understanding.

All of this brings us back to the original, logical question of, why would some with disabilities criticize others’ efforts to increase disability awareness, especially since it serves everyone in such positive ways?

Because, in many ways, such anti-awareness individuals misguide themselves toward self-defeating hypocricy. They claim to want social equality, but they refuse to interact in positive lights with others or make any effort to improve societal views for the better – instead, their irrational protesting of awareness programs makes them look as detached extremests, actually harming how others’ view of those with disabilities. And, we have to ask, what does such divisive behavior gain for any of us?

The answer is, nothing. In fact, it sets us back. If a city holds a disability awareness day, and individuals with disabilities protest it, the average person watching this play out on the evening news rightly asks, What the heck is wrong with these people – they’re protesting themselves? When you break down the subject of people with disabilities protesting disability awareness efforts at any level, it’s strikingly irrational – hypothetically like cancer survivors protesting cancer awareness efforts.

Of course, I realize that we can’t change the opinion of someone with a disability who’s extreme enough in his or her views that he or she criticizes or protests disability awareness. However, it is regretful that such individuals strive to defeat others’ good efforts, especially since we know that disability awareness programs work. In my own case, I’ve seen the positive effects first-hand that disability awareness programs bring in my working with thousands of Boy Scouts this past summer. Among the most touching results that I’ve witnessed is that I’m currently involved with several Eagle Scout candidates around the country who, based on going through the disability awareness program, switched their Eagle Scout projects toward efforts that serve the disability community – that’s a very real impact. Indeed, as I’ve witnessed time after time, it’s through disability awareness that individuals see less of a disability and more of a person in the end – and such powerful results should be fostered and pursued, not criticized and protested.

Come to think of it, maybe the critics with disabilities who don’t understand the importance of disability awareness programs need to attend a sort of disability awareness program of their own, where they learn that it’s not the wisest effort to protest oneself.