Trouble With Tongues

My English bulldog, Rosie, has an extraordinary tongue. When I say that she has an extraordinary tongue, I mean that it’s dramatically too long for her snout. When she’s sitting, her tongue peeks out between her teeth and lips like a piece of red ribbon. When she runs, her tongue flops in the wind, bouncing from her ear to the ground, then back again, flapping beside her head like a struggling kite. And, when she sleeps, her tongue drops so far out the side of her mouth that I’m tempted to roll it back up like a scroll.

But, Rosie’s extraordinary tongue isn’t wasted excess – no, she uses it to its maximum potential. Sure, most dogs will lick a child or their own paw; however, Rosie takes licking to the next level, void of boundaries, licking with no discretion toward taste, texture, or sanitation – dirt, your hair, tree bark, or carpeting, Rosie will lick it.

I’m especially amused by Rosie’s love to lick, as I, too, have always proved tempted to lick just about anything on a dare or for a laugh. In fact, I’m even inclined every so often to lick Rosie when she licks me, to her confusion, my wife’s disgust, and my daughter’s entertainment. Typically, though, my tongue doesn’t get me in trouble beyond a scolding by my wife for taking sick humor too far, like licking the oil off of our lawnmower’s dipstick, then chasing her for a petroleum-based kiss. Rosie, on the other hand, is constantly in trouble for licking what she shouldn’t be licking, with us wanting to keep her safe and healthy. “Rosie, no lick!” you often hear around our home.

Now, on the subject of doing what one shouldn’t do, I’m sure gentlemen’s clubs are known for getting guys in trouble. But, I’ve never had enough experience with them to know what kind of trouble they bring, so when I find myself here tonight, in a gentlemen’s club, it’s thought provoking but seemingly harmless, looking like a typical lounge, but with exotic dancers on the stage. My wife knows I’m here, and I’m with less-than-rowdy friends, so there’s no trouble here for me.

As I listen to the less-than-popular music played by the cliché, gravel-voiced DJ, noting the thin cloud of cigar and cigarette smoke that filters the dim light, I’m torn by the practice of gentlemen’s clubs, where men objectify women, where the women hustle men, and where everyone uses everyone in a bleak distortion of a market economy. Yet, I confess that it’s hard not to be engaged by mingling with twenty-five disrobed, gorgeous women, in a setting where I presume that my disability is less of a factor than in many situations – as long as I’m paying, I suppose that the dancers are playing.

In the context of my reservations, I’m sitting away from the action a bit, watching from a distance as a young lady, announced as Taylor, dances on the stage, noticeably staying away from the brass pole like the previous dancers, preferring to dance closer to the guys surrounding the stage.

I’ve never really had a “type” when it comes to women, preferring to address people on an individual level. But, if I had a type, Taylor is it, with long black hair, curvaceous hips, dark eyes, and funky librarian glasses – if it’s possible in the circumstance, she looked both sexy and smart. That’s my type, indeed – sexy and smart.

I pull a five bill out of my wallet, and roll up to the low-slung counter surrounding the stage. I’ve been studying the protocol, and by placing cash on the counter, the dancer comes over and focuses her attention on you for a few moments – that is, the cash on the counter is like turning on the light for a stewardess on an airplane.

And, here comes Taylor.

“I’m Taylor,” she says, standing eight-feet tall on the stage in front of me, her four-inch black heals almost at my eye level.

“I know,” I say with a wink, unsure as to what gesture to make.

“Hold on, I’ll come down to you,” she says, noting that I’m sitting back from the counter a bit, as I didn’t want to bump my knees on its edge.

She climbs down, and goes to straddle my knees, but stops, and I look from her chest to her eyes to gauge why she stopped?

“You’re married,” she says, pointing at my left hand, where my thick, white-gold wedding band shines.

“Of course,” I say.

It strikes me that if I were in a bar, trying to pick her up, I can imagine my wedding ring being an alarm bell. But, this is a gentlemen’s club, where I fathom a lot of the men are married, where there’s some sort of distinction between entertainment and intent. What’s the shocker that I’m married and wearing a wedding ring?

“Why wouldn’t I be married?” I ask.

“Because you look so young,” she replies.

“I’m thirty four, soon to be thirty-five,” I say.

“You don’t look older than twenty-four,” she says.

“Well, I’m thirty-four,” I say.

“How old is he?” she asks my friend who just pulled up a chair next to me.

“How should I know?” he says. “I’m thirty one, and he’s older than me.“

“Married, huh,” she says, turning back to me, straddling my knees, pulling my face into her cleavage.

My nose press against her chest bone, and she smells of heavy perfume, like a chain-smoking, alcoholic real-estate agent that I once had who actually sprayed her clothes with perfume out of the type of bottle that’s used to mist house plants before stepping out of her Cadillac for appointments. I wonder how Taylor’s perfume tastes? Oh, man, wouldn’t it be funny to lick her right now, with the flat of my tongue, like licking Rosie or the oil off of a dipstick, purely to evoke a reaction? But, is it wrong to lick an exotic dancer – are there boundaries, and is licking going too far? Alright, now I’m entirely compelled to lick her, just to see the consequences – it’s a self dare that I can’t pass up.

Oh man, she just pulled away, and is climbing back on stage.

I roll back to the table where my friends are sitting, and take a sip of my soda.

“What would happen if I licked a dancer,” I ask my buddy.

“Tell me you didn’t lick her,” my buddy says.

“What would happen if I did?” I ask.

“Mark, do not lick the dancers,” he says.

“So, licking a dancer is bad?” I ask.

“Look, no matter what the dancer says, no matter what the dancer does, do not lick the dancer,” he says, looking me in the eyes like my wife does when she warns me to behave. “You’re going to get us kicked out of here.”

“Fine, man, I was just wondering,” I say, going back to drinking my soda and watching from a distance, knowing how Rosie feels, always getting in trouble with her good-natured tongue.

Two Of The Same

As an adolescent and teenager, I went through a fair number of wheelchairs. On the downside, my need for a new wheelchair almost every school year was fueled out of necessity, where inferior designs simply didn’t withstand my active use, breaking frames, burning through motors, and such. On the upside, I grew up in an era when both power and manual mobility technology was evolving very quickly, where if you wished to use the most liberating technology, you had to get a new wheelchair every two years.

Among my peers, I was fortunate in that I had a small medical trust fund – and, in my teen years, an increasing connection to the wheelchair industry – that provided me the resources to obtain the latest mobility technology. Nevertheless, my good fortune didn’t seem to make selecting new wheelchairs any easier, as I was always haunted by the wheelchair choices that I had to make, where there were always two chairs that so tugged at my passions, but I had to choose just one. There was the decision between the Power and Silent Premiers by E&J, where the Silent had the horizontal motors, with the controller under the seat, giving it the sportiest look around – but I went with the Power Premier because it could be better secured on the school bus. Then, there was choosing between the Fortress 655 and the E&J Explorer, where the Explorer had better marketing, with the brochure showing it on a bed of gravel, looking unstoppable – but I chose the Fortress because it was supposed to have better reliability. And, then, there was the toss between an E&J Power Premier with 21st-Century conversion kit or the original big-wheel Invacare Arrow, which was the fastest production powerchair – I chose the E&J and 21st-Century kit because it was chain drive, and I wanted a chair that rumbled like a motorcycle. And, on the manual side, the decisions were no easier, with choices between Quickie or Quadra; Liberation Concepts or Jerry Smith; Magic in Motion or Top End; Etac or Kuschall? And, so, I built a legacy of mobility decisions – punctuated with pained choices.

Throughout those agonizing decisions, what I didn’t realize was that my difficulty in choosing one mobility product over another ultimately had very little to do with comparing the specifications of two wheelchairs. In actuality, my difficulty in choosing one wheelchair over another came out of my desire for utmost mobility, where the possibilities of every new wheelchair seemed so endless that choosing one surely left some sort of unrealized potential on the table by not choosing the other.

Interestingly, my fears never proved true, where every wheelchair that I chose dramatically increased my mobility, improving my life in big and small ways alike – in that way, my choice was always two of the same.

What I’ve realized is that meaningful mobility doesn’t come from agonized, remorseful decisions. Rather, meaningful mobility stems from the resolute decisions that we make, and living life to the fullest with the wheelchairs that we have.

Rolling Resume

Scroll EBay under the search term, “wheelchair,” and every couple of weeks you’ll see someone trying to auctioning off the back of his or her wheelchair as advertising signage, where for very little money, a marketing marvel will roll around with your business’ slogan on the backrest of his or her wheelchair. Brilliant – as brilliant as the guys who auction off their foreheads, or the women who auction off their cleavage.

Or, is it?

There’s a difference between auctioning one’s wheelchair, and auctioning one’s forehead or cleavage for advertising. If auctioning one’s forehead ties into a Howard Stern stupid stunt, and auctioning one’s cleavage ties into our culture’s adage that sex sells, where does using auctioning one’s wheelchair as advertising land as an object of entertaining value in pop-marketing?

It doesn’t. What auctioning off one’s wheelchair as signage does tie into is historical need, where those with disabilities have been portraits of charitable empathy, not empowered earners. In this way, auctioning one’s wheelchair as signage is a step backward, conjuring images of times past, eras where wheelchairs, signboards, tin cans, and street corners were acceptable means for those with disabilities to use in raising money via panhandling.

In fact, the view of auctioning off the back of one’s wheelchair as a cry for charity isn’t lost on the mainstream, as the media wrote about a recent auction, “He is looking for a sponsor for his wheelchair. Finding a sponsor would mean a great deal, as it would help him to finally be rid of SSI.”

I certainly can’t know why any one individual tries to auction off one’s wheelchair as signage – maybe it is charitable need, a stupid stunt, or good ol’ greed, all without an understanding of the harmful portrait of disability that it paints. Nevertheless, whatever the reason, I say keep the sign, but change the message and venue. I say that such wheelchair-draped signs should be printed in bold with one’s education, skills, and work history – one’s resume’ – where one pounds the pavement as a rolling endorsement of employment for oneself and others with disabilities, advertising strengths, not portraying weakness.

Then again, don’t settle for just a sign on the back of your wheelchair – make your entire life a rolling billboard of your education, employment, and empowerment, where the only backer that you need to succeed in life is yourself.

479 Pounds of Fun

After not feeling well for a few weeks – some sort of flu, I suppose – my wife drags me to the doctor after work one evening, where the nurse pokes and prods me, reading my blood pressure, taking my temperature, and all.

“Do you know your weight?” the nurse asks, likely noting that based on my sitting here in my wheelchair, I clearly can’t stand on the office’s scale.

“479-pounds,” I reply. “I weighed myself today.”

“479-pounds?” the nurse asks, looking me in the eyes.

“That’s right,” I say, following with a cough, watching the nurse write in my chart.

“The doctor will be in shortly,” the nurse says, dropping my chart in a basket on the door as she leaves.

I’m glad that my wife didn’t come into the exam room with me because she proves an overbearing nightmare, not only asking way too many questions of the doctor about my health, but generally putting a damper on my fun. As such, I roll over to the sink, and open the cabinet underneath, and it’s a mother lode of soft goods – rubber gloves, cotton balls, tissues, and disposable gowns. But, what really catches my attention are the giant cotton swabs that must be a foot long. What, do they with these, clean the ears of elephants? I pull one out and look at it, unable to resist dropping it in my backpack to tease my daughter with it when I get home. I look for other complimentary gifts, but nothing interests me, so I shut the cabinet door, and read the prescription medication advertising posters on the wall.

“Hey, Mark, what’s going on today?” the doctor asks, swinging in through the doorway, pulling up her stool, her perfume immediately filling the air over the sterile, paper smell coming from the examination table beside me.

“I’m a little under the weather,” I say. “…Cough, fever, the whole marvelous gig.”

“Let’s see here,” she says, opening my chart. “You show a fever of 100.5 – that’s not good. Oh, and look, you weigh 479-pounds.”

“Actually, I’ve lost 3-pounds,” I say. “I was 482.”

“And, how exactly are you weighing yourself?” she asks, flashing a sarcastic smile.

“On a scale,” I say.

“In your wheelchair?” she asks.

“How’d you guess?” I ask.

“Because you tried this on me before,” she says,

“I must be slipping because I’m sick,” I say with a chuckle. “Every month or so I weigh myself on our giant scale at work to see if my powerchair’s eating too much chocolate.”

“How much does your wheelchair weigh?” she asks, putting her pen to paper.

“About 340,” I say, and she does the math by hand.

“So, that means you’re 139,” she says.

“I guess that’s why you’re the doctor and I’m the patient,” I say.

“I guess that’s why your wife should be in here making you behave,” she says.

“Why – so you can both ruin my fun?” I say, and she laughs, reaching for her stethoscope.

Cars And Vampires

Cars and vampires – they’re both out to get me when darkness comes.

 

Truly, as a pedestrian in a powerchair — rolling virtually everywhere, in all weather, to and from work, morning and evening — I am more paranoid of cars than a seasoned buck leery of hunters.  It’s survival of the fittest on the road, especially at night, big machine versus little machine, and I’m the later, the lowest of the freeway food chain, a joystick-driven soccer ball among Saabs and Subarus.

But, I’m too sly to catch, knowing the tricks of the trade, carrying my garlic, cross, and silver bullets.  OK, so my garlic is an orange safety flag, my cross is a reflective jacket, and my silver bullets are signaled streetlight crossings – but, they do seem to work.  After all, I haven’t been hit by a car or attacked by a vampire in several years.

 

Still, the whole high-visibility, nighttime tactic is a tad disconcerting to me, especially the concept of reflectors.  For instance, consider how reflectors work:  They illuminate when light shines on them.  In my case, my jacket illuminates when car headlights shine on me.  Headlights only shine on me during one condition – when a car heads right for me.  Essentially, then, I’m declaring myself a cerebral-palsied deer in the headlights – and, how is that a good idea?

 

Getting back to the predatory world of automobiles, cars also have a higher-up on the highway hierarchy, known as the police.  Flashing lights always win, so maybe there’s a lesson there for me, too.  After all, they say that if you don’t want a bear to eat you, you should spread your arms, and make yourself look like a bigger bear.  Maybe, if my powerchair flashed lights like a police cruiser, I’d prove precedent over cars?  Now, that’s real garlic.

 

So, a while back, after watching a Starsky and Hutch marathon, I surfed the internet looking for an emergency vehicle strobe light that I could slap on my powerchair when in hot pursuit, or at least when trying to ward of cars and vampires on my way home from work on winter evenings.  Sure, headlights and tail lights on my powerchair are a given, but slapping on a red emergency strobe ratchets it all up a notch – or tenfold.

  

As it turns out, for $20, you can buy a battery-powered, magnetic, flashing red emergency light that’s ideal to slap on the roof of your Starsky and Hutch edition 1976 Gran Torinos – or, my powerchair, as the case may be.  And, I had to order one.

Certainly, there’s a legal question to it all, where I saw on the news that a guy was arrested for pulling over attractive women with such a flashing light just to get their phone numbers.  However, there can’t be a law against a guy in a powerchair using one to fend off cars and vampires, right?

 

Finally, my light arrived, brilliant in form, with two flashing color modes, clear and red, turning our living room into a party fitting of the Village People at the flick of the switch.  The clear flashing mode is like the strobe light used on school buses, which is great except for the fact that when I turn it on in the morning, kids from down the block come running, thinking they’re late for the school bus.  The red light, though, is the gem, flashing like a fire engine or squad car blazing down the sidewalk.

Switching the light from clear to red, however, takes more bravado than one might suppose.  After all, the flashing clear strobe is a known sign warning drivers to steer clear of me as with a school bus, but the flashing red strobe means there’s something to see – gawkers come one and all. 

 

The key, then, is to know when to use the flashing red strobe.  And, I learned exactly when to use it, down to the second.  I was on my way home one evenings, waiting at the crosswalk light, decked out with my orange flag and reflective jacket, with my Starsky strobe light sitting unlit on my lap.  As the intersecting stoplight turned to yellow, a car approaching the intersection didn’t slow, and as the stoplight turned red the car sped toward the intersection, racing to run the light.  As the car blew through the intersection, I turned on my red strobe, holding it at arm’s length from where I sat on the corner.  The car’s brake lights immediately illuminated, and for an instant, I was tempted the shoot out into the street, chasing after him, wondering if he’d pull over with the block or stomp on the accelerator.  But, I wonder, what kind of brazen criminal would try to outrun the powerchair police?

 

However, realizing that it’s likely illegal for a guy in a powerchair to impersonate a police cruiser, I quickly turned off the light, and crossed the street into the darkness, hoping the cars and vampires wouldn’t get me.  

Segregating Segregation

Timmy and Jimmy are at the forefront of disability thought.  You know, Jimmy and Timmy, the two disabled characters of the foul-mouthed television cartoon, South Park – truly, they’re among our community’s most profound thinkers.  As the story goes, Timmy, who uses a wheelchair, and Jimmy, who uses crutches, were upset at Christopher Reeve, whom they didn’t view as a real “crip” because he wasn’t born with disability as they were – disability, according to Timmy and Jimmy, is a culture you’re born into.

This episode hit home with me not only as among the most daring topics – as with mocking Reeve’s struggles – but also as among the most true, bringing to light the common but rarely discussed lines of dissention within the disabled community among those born with disability and those whom received disability later in life.  As one born with a disability, and active among all forms of disabilities, I have been acutely aware since a young age of how the disabled community divides itself based on the origin of disability.  The standard fallacy of those born with disabilities says that because you received your disability later in life than at birth, you haven’t lived the full disability experience, you’re not a full-fledged member of the disability club.  On the flip side, the fallacy is that those whom received disabilities later in life don’t see themselves as “one of them,” those with so-called true disability, because they’ve lived a “normal experience” to a given extent. As a result, you end up with a divided community where our brothers and sisters face each other, stating, “You’re not one of us,” or “I’m not one of you.”  

On a similar note, South Park is not the only television show of recent to bring to light division among those with disabilities based on how we view each other.  Christy Smith, a hearing-impaired competitor on TV’s Survivor, has undergone a barrage of bashing from the deaf community for not complying with a code of conduct that many of her deaf peers follow regarding using sign language at all times.  Smith, a graduate of Gallaudet University, chose to read lips and speak by voice on the show, rather than using sign language and an interpreter.  On the web and in the press, many members of the deaf community have labeled Smith as somewhat of a trader for not staying true to her deaf culture’s form of communication.  Again, we see the phenomena of segregating each other within the disabled community based on status policies that we create.

Beyond the interpersonal, organizations within the disabled community set up similar fractions, striving to support one particular classification of disabilities over others.  If you use a wheelchair due to paralysis, one group will assist in your ADA complaint. However, if you use a wheelchair due to any other disability, you’re not eligible to use their services – you need to go through a cerebral palsy, or muscular dystrophy, or multiple sclerosis, or other disability-specific organization to get assistance. And, let’s not overlook wheelchair sports like quad rugby or events like United Cerebral Palsy sports that have both implied and formal rules stating that you cannot participate unless you have that particular medical designation.  You may have all four extremities affected by disability or have a disorder of the central nervous system, but unless you’re a card-carrying medical member of this or that “disability” group, you’re not allowed in the door.

If all this sound absurd – that is, differentiating others based on origin or type of disability – it is.  In my mind, segregating others based on differing disabilities is as absurd as Timmy and Jimmy labeling Reeve as not really disabled, or members within the deaf community calling Christy Smith a trader for using her communication abilities as she wishes.  No matter our disabilities, or how we handle them, for the most part society doesn’t distinguish among us – lack of access, employment discrimination and similar “mainstreaming” issues impact all of us.  Why, then, do we discriminate against each other, why do we divide amongst ourselves when we face common struggles?  

There are many possible answers to such a complex question.  From the interpersonal, maybe it’s hard to witness your own struggles in another person?  From the organizational, maybe resources are so scarce that groups feel a need to protect their own?  And, from the societal, maybe we struggle to maintain our culture while still striving to be part of the mainstream?  Indeed, in the grand perspective, all of these aspects play a role in division within the disabled community.  However, ultimately, individual action supercedes all, and we have an obligation to support others with similar situations to our own, uniting and creating a better life for everyone.

Constitutional Mobility

Has anyone ever told you how lucky you are to have mobility?  Has anyone ever walked up to you and said, “You know, a lot of people aren’t as lucky as you to have that motorized wheelchair.”  Well, I’ve heard countless forms of the tired adage, “Be grateful for what you have,” and it always irks me, recognizing it as the most socially demeaning forms of patronization toward those with physical disabilities.

I, for one, don’t believe anyone is lucky to have mobility.  What I do believe is that those who go without adequate mobility are deprived of more liberties than most prisoners behind four physical walls.  I believe that the fundamental rights specified in Amendment I of the United States Constitution – rights to various forms of expression – cannot be achieved without adequate mobility.  I believe that an individual’s opportunities to succeed in society – education, employment, healthcare – cannot be fully realized without adequate mobility.  And, I believe that one’s emotional and mental health suffer without adequate mobility.  Point blank, I believe that mobility is as important to one’s existence as every word in the United States Constitution, as every cry for equality among the races and sexes, as every human’s rights law ever signed.

For one to suggest that we should consider ourselves lucky to have mobility goes beyond absurd, into the realm of socially destructive.  Imagine the uprising if, in the U.S., it was determined that only the privileged few of a minority group were allowed out of their homes.  Imagine a white person walking up to a person of a different color, and stating, “You’re lucky to be allowed out of your house.”  It would be offensive, discriminatory, racist, possibly illegal, and entirely offensive; yet, this happens everyday to people whom use wheelchairs, and it’s somehow viewed as acceptable thinking, that it’s alright for us as a group to take a lesser role in society, to have the privilege to participate in society, not the right.  

The question is, what steps do we take to help further promote mobility as an essential right, not a privilege handed to us?  On an interpersonal level, when someone suggests you’re lucky to have a chair, take a moment to tactfully explain to them that a wheelchair isn’t a privilege, it’s a necessity, affording you the ability to pursue life to the fullest, to obtain the same rights they have, that everyone is entitled to such societal liberties.   From a consumer standpoint, vote with your dollars, demand that manufacturers build better, more affordable products, do your homework and buy those that are great in performance while reasonable in price.  And, on the government level, if you are drowning in an insurance undertow of funding cuts, get your Congressman involved, let the leaders of our nation know that your voice is as powerful as any other, that you hold your representatives responsible for upholding your liberties just as they do everyone else’s.  Put simply, take a personal approach to demanding your rights, as most other groups have done to achieve equality.

If one applies the rights of everyone else to those with disabilities, it becomes clear that mobility isn’t a privilege, it’s a right.  And, as with all rights, liberties can only be had when exercised – that is, you have the right in society, and an obligation to yourself, to demand mobility, not plead for it.