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For those with mobility impairments, Winter conditions—snow in particular—can be especially demoralizing. As a full-time wheelchair user for the past twenty six years and inhabitant of the Northeastern United States, I have gradually watched my child-like excitement at the falling of the first few flakes of the winter season turn into a cynical dread when faced with the necessity of wheeling through several inches of the stuff. But this year, depression be-damned, thanks to a wonderful invention known as the Electric Power shovel.

An unexpected journey through the world of disability and step parenting...

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The Argo Technologies Rewalk, one of several recent “exo-skeletons” designed to give the wheelchair-bound the ability to stand and ambulate, recently gained some more visibility (Fans of the T.V. show Glee will recall the Rewalk’s now famous appearance in the 2010 Christmas episode) by being chosen one of Popular Science’s Innovations of the Year in the Health Category. As these devices inevitably make their way from medical journals to the mainstream media, those of us in wheelchairs will undoubtedly face the question, as I did recently: If a Rewalk showed up at your door tomorrow, would you use it?

When I was sixteen and licensed up, I was gone. Literally—every opportunity I had, dust trails out of my parent’s driveway. No more hanging around the T.V. room, the living room, or even the groovy wicker-chaired sitting area of my bedroom, where I’d hang for hours, staring into my Lava Lamp, burning incense and listening to The Pink Floyd (I apparently didn’t realize that grabbing my parent’s retro Sixties stuff from the attic would result in me living in some weird alternate version of the Sixties, even though clearly, it was the Seventies. Thus it went with me...). My new found mobility had its price, however, for I had to take a job washing dishes to help cover the spike in my parent’s insurance premium—their penalty for being saddled with a sixteen year old male—but a small price when compared with my new-found ability to traverse the boundaries of our then-rural patch of Northwestern Connecticut in the family Volvo station wagon, sometimes packed with as many teen-aged bodies as we could carry, or sometimes just a few bodies, packed with as many illegal substances as we could carry.

It’s no wonder I’m scared to death now that my step son Josh has reached driving age, what, with my sordid teen years and all—at least what I can remember of them. And based on what I can remember, it’s all terrifying.

We borrow money from our kid’s wallets sometimes. I know what you’re thinking: Bad Parents! But let me defend this by saying that a) it is nearly always used for some last-minute kid-related purpose where debit cards aren’t accepted and b) we always return the funds once we’ve had a chance to hit the ATM. Unlike many, more organized parental units, who for all I know must sleep with money belts, for how else are you to come up with $18.50 cash five minutes before the morning bus arrives and you are informed by your son or daughter that today is the last day you can pay for the team sweatshirts that he or she forgot to mention all week? For us the choice is simple: hit up the kid’s wallet stash, where that pile of twenties from the last holiday or birthday awaits.

I walk myself backward on my hands, planting my butt in the wet sand every 3 feet. My heels trailing leave strange elongated tracks, as if some exotic mammal had dragged itself to the edge of the salt water inlet and back. I suppose right now I could fit that very description, with my spandex bike shorts, skinny legs and diving booties; my skin scorched red-brown by the sheen of the Cape Cod sun on the water. When I’ve gone about twenty feet or so, I remove the braided line from my clenched teeth and pull the plastic kayak the same distance along the tracks I’ve just laid until it’s nearly touching my toes. Then I repeat the whole process—plop, plop, plop, pull—until I’m finally at the foot of the stairway that traverses the sea wall leading to the higher ground of our resort. It’s more civilized up there; green manicured lawn, chaise lounges and Weber grills off the back porches of the water-facing units. But until I get my gear back up there I’m stuck down in the flats—my boat, my paddle, the muck, a few hermit crabs and squirting clams and me: the paraplegic who insisted on going paddling at low tide.

[The follwoing is an excerpt from chapter 10 of "They Call Me Wheels"]

When trying to impress upon your kids the many dangers—and potentially bad choices—they will face as teenagers, having a living, breathing parent in a wheelchair can be mighty handy. Both Josh and Ben know the general circumstances surrounding my accident, in as much I wasn’t wearing a seat belt. It’s a great tool getting Ben to wear his own seat belt, now that he’s out of his booster seat.

God knows our own parents used plenty on us: ‘Wait a half hour after you eat to go swimming, or you’ll get cramps!’, or who could forget ‘If you swallow your gum it will take seven years to digest!’, or my favorite ‘Don’t cross your eyes—they’ll get stuck in that position for good!’. In turn, we’ve updated, recycled, recalibrated and re-released many of the same myths upon our own children—for as we ourselves learned, what better way to get kids to at least stop and think about whatever bad behavior they’re about to partake in than to instill a bunch of nebulous half-truths (well, let’s face it, the swallowing gum one is an outright bald-faced lie). Nevertheless, it’s how we parents have rolled probably since the dark ages. (Imagine: ‘Don’t go dating any Visigoths from the other side of the Alps or you’ll wake up with pointy ears!’, and so on…)

This will be my 25th winter in a wheelchair; my first was just after my twentieth birthday, having been paralyzed in my friend’s car wreck the previous spring. For my part, instead of sliding into my typical Wheelchair-Bound Winter Depression, this year I decided not to be bullied by “Snowmagedon”, “Snowzilla”, “Snowtorius B.I.G” or any other schmaltzy media cliché. I resolved to summon my powers of problem solving and logistics—the very same that had carried me through these past twenty five years of impairment—and face that “Wicked Winter Wallop” head-on!

The Holiday season is nearly synonymous with the word ‘family’; it is undoubtedly a time for togetherness, yet for families whose parents are divorced, the Holidays can be just the opposite: a fractious, frenetic, logistical nightmare where ex-husbands and wives often find themselves duplicating the Holiday experience for their children in separate households, miles away, and often on different days altogether. While I’m certain many divorced parents have devised novel solutions to the dual-household problem, (Santa visits your house on even years, mine on odd years, for example) I believe I have found perhaps the simplest solution of all: Christmas day at my house and everyone’s invited, including the ex; and why not any friends of his who might be around; and while we’re at it, why not the ex’s father as well—he is, after the children’s grandfather. Yes you heard right. In our house we celebrate holidays—not only Christmas, but most of the others as well—all together; me, the wife, the kids and the ex and his ilk. Like a big, blended, extended, dysfunctional family.

It’s Tuesday night, I’m watching the last segment of the Glee Christmas show and I almost fall out of my chair when Artie, the show’s token singing, dancing, rarely moping paraplegic gets a bona fide Robotic Walking Device for Christmas! And what to my wondering eyes should appear, but the actual ReWalk system developed by a quadriplegic in Israel (the real thing, not Hollywood smoke and mirrors). I should have seen it coming during the sub plot that features an Artie dream sequence with him sans wheelchair dancing it up with the rest of the cast, and Brittany, Artie’s girlfriend telling Santa (Coach Bieste in a Santa suite) that all she wants for Christmas is for Artie to walk again. But I am nevertheless overjoyed; not just because the most-watched prime-time television show has featured the very latest in walking technology as part of the plot, but that there’s also a mention of stem cell research earlier in the show (“we’re still a few years off,” claims Sam as the Gleek jocks discuss the latest research developments for SCI with Coach Bieste).

Big news is afoot for those permanently confined to wheelchairs: Robotic Walking Devices are finally here. For those like me, who have been paralyzed for several decades, this is an astounding achievement. By contrast, when I suffered a traumatic spinal cord injury in 1984, I was told by doctors that a) there was unequivocally no cure for SCI, b) that virtually no research toward a cure had been done since World War II, and c) to expect no significant gains thereof within my own lifetime. Now, a mere 25 years later, latest robotic technology has served up a compelling “hardware” cure, with a dash of sci-fi / Six Million Dollar Man thrown in as well: Robotic Walking Legs! My only questions at this point: When can I try one out, will insurance cover it, and how far can I jump with one of these things? (More on the “jumping” thing later…)

It's Saturday, day one of Noah’s first grade soccer league. We are hopeful that Noah, now six years old, will follow in the footsteps of his older brothers, Ben (12) and Josh (15)—both accomplished soccer players for their age. The whistle sounds and they’re off. This is “beehive” soccer—basically a wad of kids swarming around the ball until one gets enough of a foot on it to break it loose. The hive follows, but where is Noah? Nowhere near the rest of the crowd…is that him spinning around? Now what’s that—handstands?
Noah! Follow the ball! Run to it… come ‘on get in there!
Noah, in cleats, shin guards and Underarmor, happy as a clam, just looks over at me and Elizabeth, smiles and waves, still oblivious to where the ball is or who has it. The other team scores repeatedly.
Noah! Pay attention! Show some intensity!!!
My god—I’ve become my own nemesis: the overbearing, sideline parent...

A physical disability can provide a unique perspective on sweeping social trends, particularly if those trends require physical attributes you don’t necessarily possess. Take, for instance texting. Or more to the point, walking and texting at the same time. Though modern teenagers might argue texting to be the pinnacle of the evolutionary use of our species’ opposing thumbs, consider how curious this phenomenon must appear to those who have little or no use of their opposing thumbs, such as quadriplegics. Even for those like me, paraplegics who have the the full use of their hands, texting and moving forward in a manually powered wheelchair is nearly impossible—unless you text with one hand and push with the other, which will only result in you traveling round and round in a circle. And forget actually stopping in one spot and texting—that is so Your Grandmother it’s not even worth considering. So that leaves us wheelchair users back where we started; hopelessly out of step, raptly watching the world of ordinary humans as they walk, run, drive and do just about everything else, all while texting at the same time.

Invitation to participate in research: The University of Western Sydney is undertaking research into the impact of Spinal Cord Injury (SCI) on family planning decision-making. This study is undertaken by post-graduate students, supervised by staff members. By taking part you will be assisting these students in their course, as well as helping us to identify important psychosocial themes relating to reproductive decision-making. We are interviewing men and women with SCI between the ages of 18 and 50 to assess subjective expectations, hopes, and beliefs relating to the parenthood decision-making process.

“Wow, this guy is really old school,” I whisper to Elizabeth. We’re in the auditorium of our local junior high school on a fall weeknight attending a lecture by renowned child psychologist and author Dr. John Rosemond. For those of you who have read Dr. Rosemond’s syndicated columns, or any of his excellent parenting guides, you know him as the tough talking, family values traditionalist; just the thing a struggling post Baby Boomer parent like me needed to release his own inner “Old School Guy”.

As excited as we are, we enter somewhat gingerly, hoping that we won’t see anyone we know; for as silly as it sounds, attending a lecture by the author of such books as Parent Power! and Family of Value feels eerily like a self-admission that we’ve failed as parents, and are in need professional help; that things perhaps things aren’t going so smoothly behind the scenes at our household.

When I was starting out in the IT field many years ago, charged with implementing and maintaining computer and network security, a wise manager showed me a valuable tool for making the right decision at the right time—sort of a personal and professional liability check. The trick was to say what you were doing out loud, but insert the phrase “Your Honor” in front of every statement. For example, “Your honor, I didn’t apply proper security to those confidential personnel files because I was sure no one on the network would ever think to look there…”, or “Your honor, I didn’t reset the password of the guy we just fired because I was sure he wasn’t the kind of person who would take down the entire network before he cleaned out his desk…”, or “Your honor I meant that pat on my female co-worker’s derriere to be strictly in a buddy kind of way, you know, like the guys on my softball team?” You get the idea. But I must admit—it really worked. Recently, I began to wonder if this tactic might also work with my kids.

(Time out from the blog for a little shameless self-promotion…)

At long last, They Call Me Wheels ($13.95 in paperback) is live and available on Amazon, Barnes & Noble(bn.com), iUniverse and many secondary online retailers. It will be available for download on Kindle, iPad and Nook formats shortly. It makes a great Father’s Day gift, so order your copy today! (Ahem...)

One night, while tucking in Ben, our 11 year old, he asks: “Would you trade being in a wheelchair for being able to walk, but you could never sit down?”

“Yes!” I quickly reply.

“Really?” He seems surprised. “Even if you could never, ever sit down. Not even once?”

“Trust me,” I say, wheeling over to the light switch, “sitting down all the time is completely over-rated.”

In the darkness, Ben expresses more puzzlement, but I’m already gone. All this wishful thinking finds me wheeling down the hall, lost in my favorite daydream; the one where I’m running on the beach, feeling the cool wet sand between my toes; then my second favorite, where I’m carrying a chest-of-drawers up the stairs to a 5th floor walk-up in Manhattan with Jane Fonda; but wait, here’s a new one: I’m blue, 10 feet tall, and have pointy ears and a tail—where’d I get that one?

For months you’ve endured my relentless hyping of They Call Me Wheels while the finishing touches are being finalized with the publisher. But now let me introduce something really useful: Sample Chapters from They Call Me Wheels!

Recently the blogosphere (or should I say, the ‘mommysphere’) has virtually erupted over a snarky piece in the Style section of the New York Times entitled Honey, Don’t Bother Mommy, I’m Too Busy Building My Brand. The veritable online backlash has introduced me to a burgeoning cultural phenomenon unfolding right under my nose. And apparently I’m all a part of it. It seems everybody’s blogging about their kids.

Children have probably been pitting one parent against the other since the first Hominid family groups roamed the prehistoric African plains. And who can blame them, since they’ve figured out that asking parental unit #2 will often yield more favorable results. However, for the step parent who’s attempting to establish effective parental governance, a child’s constant second guessing, or insisting on the final word from the natural parent can be particularly biting; the child may just be searching for the better deal, yet it’s hard for the step parent not to feel ineffective, even inferior in the process.

Apparently everyone knew but me. As strange as it sounds, it was easy enough to get lulled into this erroneous belief, living a life of permanent paralysis, seemingly at the bottom of the barrel. Down here you get used to the idea that life cannot possibly get any better, at least in the physical sense. But by that same token, it surely could not get any worse, either.

I guess that’s what we are now – blended, like Mike and Carol Brady; except our “bunch” didn’t all arrive at exactly the same time, or in the same manner. First we were “Steps”, that is a family of step-relating individuals: Elizabeth and her sons Josh and Ben; and me, the new guy. Then, four years into it, along came little Noah, the offspring of mine and Elizabeth, and the mash-up was complete. Now we’re all connected in some obtuse, yet cyclical kind of fashion. But it can still feel strange, especially in our small town, which appears to be busting at the seams with The Cleavers from the black & white nuclear family era.

While lamenting the simple days of our youth, long before YouTube, Twitter, before even computers in fact—where the most questionable thing we could ask for might actually be that Daisy Red Rider BB gun, I suppose the ever increasing popularity of these amazing electronic gadgets with our kids is better than such perilous counterparts, although the silly M-16 rifle app that Ben loaded within minutes of unpacking his Touch sounds as if it could actually put out more than just someone’s eye.

‘Tis the season for compilations, and TCMW is no exception. Since I am a relatively new blog, I feel it only fair to offer my best/worst take on events of the past year, loosely based on disability and parenting related issues, however as you will see, some other topics surely crept in uninvited. I’ve also kept the best/worst verdict somewhat loose, since that is ultimately up to anyone’s interpretation on any given day.

“You need any help?” he asks, breathlessly. I had hoped my awesome display of wheelchair assembling finesse would have demonstrated that no help is required, but he’s committed; something is still not right in his world –

Sex…the final frontier. These are the voyages of the wheelchair known as ‘Matesky’. Its 25-year mission: to explore strange new social situations; to seek out new life receptive to intimate relations with partners who cannot move some or all of their limbs; to educate, enlighten and forge new alliances with the skeptical, or embarrass myself beyond the point of no return in trying; to boldly go where no mid-thoracic, lower-motor neuron lesion, neuro-genic bladder-equipped, center-cord injured paraplegic has gone before…

Fertility is a dodgy subject among us spinal cord injured. It is definitely a possibility, for at least a fraction of male spinal cord injured victims have managed to procreate the normal way, and with modern fertility techniques such as artificial insemination, the world is open to an even wider array of possibilities and options.

Did I lose focus that easily, or shift gears so unpredictably as a child? Hell no. I was an angel. I can’t for the life of me, remember giving either of my parents a hard time – especially not during the sacred “TV Time”. And with our black and white GE 19” television that pulled in a whopping 2 and a half channels through the deluxe rabbit ears, the commercials were actually more exciting to me than the dreary line-up of late 1960’s TV programs. Get up from your spot in those days and you might miss the ‘Plop-plop Fizz-fizz’ ad or the one where the dog chases around the little animated chuck wagon

ALERT: Call it an experimental expedition in FaceBook mass-delivery methods, or just a plain, old-fashioned screw up; but those of you FaceBook friends of my wife at Parisiantemptress may have received what appeared to be an invite to a book launching event for January 1st, 2010. Many of you, politely and respectfully declined, even the ex-high school boyfriends (WHEW!) - even we consider New Year's Day an odd time to host such a thing. So no worries. They Call Me Wheels will be published sometime AFTER January 1st, and I will be posting that date right here once I have a confirmation. The launch party will be announced, and I am considering making it both a real and web event, so stayed tuned...

Here is the paradox of being disabled: Most, if not all desire a life where they simply blend in, not to be singled out in any way based simply on their appearance or physical ability. Yet to live this independent, anonymous and unencumbered lifestyle requires a tremendous amount of awareness, not only from the individuals around you, but in the physical configuration of the world itself – ramps, accessible entryways and even handicapped parking spaces must be in place to insure that you can navigate successfully in public. Rules designed to protect and advocate the rights of those with disabilities must be known and adhered to by everybody, not just the disabled community. So what we ask – I, in particular, ask – is for everybody to know my rights, know my disability, know and look out for me, but just don’t notice me.

...or does it seem that everyone else’s kids are better behaved than ours?

It is March 1984. I am nineteen years old and I lie in the Intensive Care Unit of John Dempsey Hospital in Farmington, CT, paralyzed from the chest down after shattering the 3rd and 4th thoracic vertebrae of my spine, and unable to breath from two collapsed lungs. It will be weeks before I can piece together exactly what happened, but the last thing I remember right now is riding in the front seat of my friend’s Volkswagen Scirocco. We were about a mile from my house, on the way home from a night of fucking around at the local bars. Months from now, I will read the official police report and discover I had flown seventy five feet through the front windshield when the car veered off the road into a drainage ditch. My friend who was driving would only suffer minor injuries.

It’s easy for me to take the disciplinary high road, here at the House of Rules, home to the boys five nights out of seven per Elizabeth and Rob’s divorce arrangement; its the mundane, boring house, where dinner and bedtime occur on-time, without fail, even if it means killing ourselves to do so.

Josh hit a triple just a few moments before, but at this new development in the game, he’s leaping skyward, arms up, shouting with such wild exuberance. Josh learned yesterday of his nomination for the Farm League All-Star team, but even that accomplishment didn’t earn this kind of joyful reaction—and I ought to know, since I had attended almost every game since his tee-ball league three years ago.

I never had the luxury of an exclusive sit-down sex talk with my old man, and thankfully so. It would have been excruciatingly awkward for us both. I learned about the birds and the bees the good old fashioned way – on the street. In my case, “the street” was the Playboy or Penthouse someone stole from their father’s secret drawer, or the half-destroyed Hustler magazine we actually found in the latrine at Boy Scout camp.

A man can lose himself out here, with all these leaves. He can lose his sense of earthly proportion; for instance where the pile ends and where the ground actually begins. It’s bad enough not knowing, but when you stop caring, you’re done for. I have gone 84 days without raking a single leaf. Now the first winter storm is about to hit, and I am surrounded by leaves – absolute and unyielding - ripples in a vast, bare-patch-of-grass-less desert.

Nothing is sacred anymore – I now understand it. It has taken me just four weeks to realize what every parent has long known; that there will be no stone unturned, no corner of this house untouched. Every closet, window sill, drawer and pantry; down to the last trinket or scrap of loose change will be analyzed, and/or manipulated by these children at least once, if not hundreds of times.

Who among us hasn’t at least once thought about how grand it would be to raise a professional athlete? As I watch Josh and Ben’s growing enthusiasm for the sports they play, I can’t help but wonder, which one could go pro? It would certainly help with college tuition. But I remind myself to draw the line between encouraging and pushing. It’s Josh and Ben’s desires that count, not mine. And not that dad shouting behind me in the stands, or that fat-cat who bought his kid’s position in the batting order.

In all my years confined to a wheelchair, some of the strangest experiences I’ve ever had have occurred at gas stations. A generic, mundane chore for the non-disabled invokes a weird, sobering form of irony. The federal Americans with Disabilities Act (ADA) has provisions that require self-serve gas stations to provide a full-service alternative for disabled drivers. Like most ADA rules, it’s self-enforced, and in fact the average attendant sitting in the cash booth, watching a little TV and working for minimum wage at many of these stations have never heard of the ADA!

There he is again. Same time, same stall, same two brown shoes. They’re old, I would guess at least five years; loafers, with a noticeable scuff on the outside toe of the left one. For months now, it has been this tacit charade – just me and him. The thing that’s odd though, is that he never makes a sound; no breathing, no sniffling, no rustling of newspaper pages. Just two brown shoes always rooted in exactly the same spot, completely devoid of movement; never the slightest tapping or flexing, not even the subtlest tremor of discomfort.

“Why’s it taking so long?” Ben wants the mouse out of my hand. He rests his index finger between my own thumb and forefinger, trying casually to liberate it. If this were Backyard Soccer or any of his other computer games, I’d gladly oblige. But we’re both wading into unfamiliar computer territory; therefore I dig the heel of my hand into the mouse pad and he reluctantly yields to me, his step father of the past seven years. He sighs impatiently into my ear, and subconsciously starts rocking the right tire of my wheelchair with the toe of his shoe, as he often does when aside me at the computer. I must compensate for the unsettling motion with strategically placed mouse clicks - it’s like being online in the cabin of a rocking ship at sea.

Of course, sometimes there actually is a rhyme and reason for disability. The fact is, the majority of the time we were doing something pretty stupid. In most cases we could have done something to have prevented it.

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