I like about profound physical disability what others hate about it: You ultimately can’t hide it. Clear physical disability demands living in your truest sense, as you physically are, undeniable to the world. You can buy a lot of disguises – fancy clothing, enhancing cosmetics, and other surface masks – but none vale a wheelchair, muscle spasms, or impaired speech. And, there’s liberation and empowerment to embracing such a simple rule, knowing that no matter how you dress or what airs you strives to present, you are still as you are, with your true cards on the table for all to recognize. I say that you can be better because of it – your relationships can be better because of it – where others take and leave you truly as you are, undeceived by fancy clothing, enhancing cosmetics, and other surface masks. I say, that’s living with disability – that’s living bold.
I’m 715-feet in the air, looking over the side of my powerchair, with an unobstructed view from my rear tire, to the teeny-tiny swimming pool and dots of lounge chairs that are 55-stories below me – this is as close as it gets to skydiving in a powerchair.
I’m at the Ghost Bar, atop the Palms casino in Las Vegas, parked in my powerchair on a glass block about the size of a kitchen table. The glass is imbedded in a balcony floor, providing a crystal-clear view from the top of the Palms, to the ground below, a view that one might only briefly retain if they were plummeting toward Earth. Few at this mobility industry gathering thought that I’d have the guts to drive onto the glass, but I had two bits of information that I reckoned would prevent me and my powerchair from meeting our maker on the concrete pool deck below: Firstly, I once saw three drunken pseudo-celebrities jumping up and down on this very glass block on MTV’s “The Real World, Las Vegas”; and, secondly, no business would ever have such an attention-grabber unless it was foolproof, so I was confident that the window over the world could retain my weight.
Despite my confidence, anything is possible, and what if something went horribly wrong during the engineering and installation of the glass block, and the weight of me and my powerchair was the so-called straw to break the camel’s back, sending me into a catastrophic freefall over Lass Vegas? Fortunately, in either case, I couldn’t lose – if I lived, I would be respected for having the guts to roll onto the glass, or if something went wrong, I would have among the coolest death stories in the history of mankind, having fallen 55-stories in a powerchair. With such a win-win situation, I had to take the dare, and roll out onto the glass block.
So, here I am, parked on a glass block, high above the Earth, surrounded by a crowd that’s seemingly impressed by this non-impressive feat. Indeed, I’m not falling to my death, which may be just the sign I need that my luck at the black jack tables is about to change for the better.
“Come on, Dave,” I say to my colleague, “let’s go down to the casino, and play some cards.”
I’ve just won forty bucks in half an hour playing black jack, so now I’m saving my winnings, drinking a casino-courtesy Coke, and watching Dave drop quarters into a slot machine. An attractive, twenty-something woman just sat on a slot machine stool next to me.
“How’re you guys tonight?” she asks.
“Fine, winning here and there. How are you?” I ask, making idle conversation.
“Good,” she says. “So what are you guys doing tonight?”
“Hanging out,” I say, watching Dave fight to get his quarter back from the now-jammed slot machine. “What are you doing tonight?”
“Just looking to make new friends,” she says, winking at me.
Now, I’m not the most naive guy you’ll ever meet, but this has never happened to me. I just realized that I’m being solicited by a prostitute, and now I’m clueless how to handle this situation that I’ve innocently talked my way into.
“We’re both happily-married men,” I say, holding up my left hand, showing my wedding ring like garlic to a vampire.
“So you’re not into this?” she politely says.
“Actually, I’m more inclined than he is,” I quickly say, pointing at Dave, whom just pushed the button to call for an attendant to get his quarter back.
Oh no – did I really just say that? Did I really just say that I’m more inclined than Dave toward prostitution? If there’s ever been a statement that’s come out entirely wrong, it’s the one I just said.
Dave looks at the woman and says, “What did he just say?”
“He said that he’s into it, but you’re not,” she says with a smile, as if in entrapping me with my entangled, misinterpreted words.
Dave looks at me like I’ve lost my mind, and I’m hoping that casino attendant shows up quick, giving Dave his quarter and diffusing this whole situation.
“No, that’s not what I meant,” I say, somewhat panicked that now I’ve inadvertently solicited the woman in return. “What I meant was, Dave’s very religious, and while I’m not personally into your thing, I’m not against it. Well, I am against it, but not against it, if you know what I mean.”
She’s looking at me like I’m speaking Japanese to an Englishman, and I might as well be – this whole solicitation dialog is way out of my range of experience, and I don’t know what I’m saying. Where’s that damn casino attendant?
“Look, we’re not into it,” I say, figuring I have to put an end to this conversation. “We’re both happily married, and not into any of this.”
Finally, the casino attendant arrives, using her key to open the machine to get Dave’s quarter.
“OK,” the soliciting woman she says, standing up. “Good luck, guys.”
With the prostitute gone, and Dave’s quarter returned, Dave and I decide that we should head back to the party, and walk toward the elevator.
“Did I just sound like a complete idiot?” I ask.
“Considering that was your first solicitation by a hooker, I thought you were pretty cool,” Dave says.
“I guess so,” I say. “And, at least we’ve learned that prostitutes don’t discriminate based on disability – the ADA is really starting to pay off for me.”
When I was nine, we were poor. My father had skipped town, my mother was working part time as a schoolbus driver, supporting my brother and me in a tiny duplex on the bad side of town, never having enough of anything – money, education, self-confidence. Yet, what my mother did have was a sense of empathy for others, understanding that the best effort that she could make was toward helping those more in need than us, where, as she often explained, unconditional good deeds would likely come back upon us in meaningful ways if we were ever in dire straights.
And, time and time again, her belief in helping others proved reciprocating, where she often gave our last dollar to someone who needed a hot meal more than we did, and then when our lives were at a breaking point – our car broken down on the side of the road, or an eviction notice stapled to our door – good karma enacted, with another empathetic person stepping in to help us, where an inexplicable chain of events led a kind-hearted mechanic to the car or a resourceful social worker to the door. It seemed that my mother, through generating good karma, had a surefire system of always getting by – by simply helping others. “Things always just work out,” my mother said. “Do the right things for others, and things will eventually come your way, too.”
As an adult, for better or worse, I’m not as secure running solely on faith as my mother was, understanding that education, meaningful career paths, and financial responsibility are surer ways toward everyday security than living on the edge, trusting that between the door and the street, good karma will rescue you. Yet, in the mobility world, my mother’s belief of generating good karma by helping others always proves true, where I’ve witnessed that users who put others’ mobility needs in front of their own always come out with enhanced mobility.
Most recently, I was at a user’s house, setting him up with some wheelchair technology that I thought might enhance his mobility, and I realized that I didn’t see any other wheelchair in his house besides the wheelchair he used. The absence of multiple wheelchairs struck me as odd because usually upon visiting one’s home, I see an array of wheelchairs, at least an old manual chair tucked in a corner for when one’s regular wheelchair needs servicing. But, in this gentleman’s case, I didn’t see an extra wheelchair anywhere.
“Do you have a back-up chair?” I asked, thinking that he would say it was hidden away in the garage or a closet.
“No, I don’t,” he said. “I had one, but I know this guy who’s a double amputee, and his insurance wouldn’t cover a chair, so I figured he needed my old one more than I did, so I gave it to him.”
“How long ago was that?” I asked.
“About two months ago,” he said.
And, it all then made perfect sense to me – that is, he unconditionally gave his back-up wheelchair to someone who truly needed it, and the good deed was then coming back to him in the form of additional mobility technology. The karma of mobility was on his side.
I hear and witness the karma of mobility everyday, where users who help ultimately receive sustained mobility, themselves. Is the karma of mobility an intangible, entirely anecdotal, impossible for anyone to prove – entirely idealistic?
Sure it is. But, I have never seen the karma of mobility fail in practice.
I know that I jerk – or, spasm, as it is – but, why is she jerking?
This all started minutes ago, when I entered this bank, wanting to transfer funds from one account to another. However, rather than it being a teller transaction, I had to go into the office of the financial specialist, who I’d never meet. When I got to her door, there was an elderly woman already in the office, ranting about her bounced checks at the local pharmacy. Finally, the elderly woman saw me waiting, and excused herself. And, that’s where all of the jerking – or, spasming, as it is – began.
“Can I help you,” Sharon, the financial specialist asked, standing in the doorway of her office, her bright blue, classic business suit painting a professional image, made especially dramatic by her slender, six-feet-tall-on-heels figure.
“I need to make a funds transfer,” I said, with a slight spasm.
And, in among the most remarkable scenes that I’ve witnessed, then she spasmed – not just a little flinch, but a flailing of her whole body, like Peter Burns in the classic Talking Heads video, as if her feet were anchored to the floor and her upper body was struggling to find its balance, arms flying through space.
But, just as I was awestruck, she stopped spasming, returning to normality.
“Sure,” she says, eloquently pivoting on her three-inch heels. “Come on in.”
As I followed her into her office, she intuitively moved a chair out of my way, so that I could pull in front of here desk. Here movements were so graceful that it seemed impossible that she spasmed so severely moments before. She sat in her chair, and I reached in my shirt pocket for my account information, with my usual spastic movements. And, when I looked up, back across the desk, she was spasming, too. I tried my best to hand her the paper, but every time my hand jerked, so did hers, making it like two airplanes trying to transfer cargo in mid air. Finally, I slapped the paper on the desk, and slid it to her.
“All the account information is on this paper,” I said, watching her read it off the desk as she typed into her computer.
So, here we sit, periodically jerking.
Now, getting back to my original question, I know why I’m jerking – I have cerebral palsy, for the whole world to see. But, why is she jerking, and why does she only jerk when I jerk?
If I knew why she was jerking, I wouldn’t be the least bit concerned. However, because she only jerks when I jerk, and I don’t know why, I’m intrigued. Maybe I should ask her why she jerks when I jerk? But, wouldn’t that be rude? Or, maybe she doesn’t know she’s jerking. Then again, I know when I jerk, so she must know, too. And, I never mind when people ask me about my disability, so maybe I should just ask her, bringing all of this jerking into the open? But, isn’t it wrong of me to presume that others are comfortable discussing their disabilities, and who am I to demand an explanation?
“Is it cold outside?” she asks.
“A little,” I say. “…Not bad.”
“It has been warming up,” she says, typing away.
Now, this is nice – she’s entering my transfer, we’re chatting, and there’s no jerking.
“Is there a fee for this transfer?” I ask, with a slight spasm.
“Yes,” she says, with her own spasm, slightly grimacing. “It’s an in-branch transaction.”
“Well, there shouldn’t be,” I say, my neck spasming. “I tried making this transaction online, but your system won’t allow it.”
“Let me call in the manger, and see if I can waive the fee, ” she says, picking up the phone, spasming with the receiver in her hand.
A woman soon walks in, who I recognize as the branch manager, and now is my chance to see a third person’s reaction to all of this jerking.
“I’m transferring funds from one account to another because your online system wouldn’t allow it, but Sharon tells me that there’s a in-branch fee,” I say, spasming, looking at Sharon to watch her spasm, then capture the manager’s reaction.
But, Sharon doesn’t spasm, calmly stating, “Can we waive the fee for Mr. Smith?”
“Sure,” the manager says, “take the fee off for him.”
“Thank you,” I say, looking Sharon square in her eyes, deliberately slipping my leg off its legrest, throwing off my balance, fostering spasms that are impossible not to notice.
“You’re welcome, Mr. Smith,” Sharon says, gracefully returning to her computer, typing at fast pace.
I sign the form authorizing the transfer, spasming here and there, with the manager watching, and Sharon remaining as steady as a surgeon.
The manager leaves, and Sharon thanks me for my business.
“You’re welcome, and I appreciate your help,” I say with a twitch.
“Certainly,” she says, twitching, too.
“I knew I wasn’t imagining it,” I say.
“Pardon me?” she asks.
“Every time I jerk, you jerk,” I say. “But, when your boss was in here, you didn’t jerk.”
“I know,” she says, walking to her door, hinting that I should leave.
“OK,” I say, rolling toward the door. “You know, you and I should have tea sometime.”
You’ve likely heard the phrase, “It takes a village to raise a child,” expressing the sentiment that community responsibility as a whole is vital when it comes to making a difference in the lives of those around us.
However, that adage, as well intending as it is, doesn’t always prove true. The fact is, it doesn’t “take a village” to facilitate change, to impact the life of another; rather, it takes only one person to facilitate change, one person willing to assume responsibility, one person to accept accountability, one person to come forward and address an issue, to make a difference.
Every evening, via email, I receive newswire articles relating to the word “wheelchair.” Throughout the year, the news stories come and go, from inspirational to absurd to heart wrenching. However, the ones that jump out at me the most are the ones where people are truly in need, where someone’s wheelchair was stolen, destroyed in a fire, or such. The articles’ photos are always the same scene – a person sitting in a hospital-type manual wheelchair that was donated by the community, that’s far too wide, without a cushion, horribly positioned.
My daughter and I read one such article several months ago, of a 15-year-old young man whose manual wheelchair was stolen from his family’s porch. And, there he sat, awkward, in a hospital-type wheelchair that looked three-times his size.
“What’s going to happen to him?” my daughter asked.
“They’ll either find his chair, or they’ll get him a new one,” I replied.
“What if they don’t find his chair or get him a new one?” she asked.
My daughter was on to a key question: What is the ultimate outcome of such stories? How or when does an individual get back into appropriate mobility after such a devastating event, and does community outpouring resolve the situation?
I contacted the reporter, and he explained that it was terrific that the good Samaritans had donated the hospital-type wheelchair, that the young man’s provider was appealing to the insurance company to buy him a new wheelchair. Understandably, the reporter didn’t seem to know the difference between one wheelchair and another, nor did he seem to realize that the young man was in mobility limbo without an appropriate wheelchair for his needs. Through my conversation with the reporter, it sounded like it was the end of the story – that is, the community had donated the hospital-type wheelchair, and the provider was submitting to the insurer for a new wheelchair.
Yet, the boy still lacked appropriate mobility, where everyday without an appropriate wheelchair was a day lost, where one aware person could make all the difference, where one person could likely order a new, appropriate wheelchair, having it delivered within in a few days. Maybe it meant an inspired individual using some of his or her own money to fund a new wheelchair, or maybe it meant quickly collecting cash donations, or maybe it meant calling a wheelchair manufacturer to donate a custom wheelchair. By any means, one tenacious individual could have helped restore the young man’s mobility in a matter of days, not weeks or months. One inspired individual could have immediately taken action, fostering the young man’s mobility and independence, rather than simply closing the newspaper, trusting that the community at large would address the issue.
In the new year, I encourage you to be that one person to make a difference, the one who doesn’t close the newspaper on such stories, the one who makes the phone calls on behalf of your fellow wheelchair user in need, ensuring that his or her mobility isn’t left in limbo, that his or her mobility is properly restored.
Sure, the “village” may seemingly address issues, but it’s up to you to make a true difference.
This hospital bed would be comfortable under different circumstances – maybe in my bedroom, watching television; or, maybe in a Las Vegas hotel room, overlooking the Strip; or, even parked in my office, in front of my computer, next to the phone. But, here I am on the fifth floor, in the cardiac unit of a hospital, staring at the stained ceiling tiles, listening to squeaky I.V. racks and E.K.G. monitors roll up and down the hall, reminding me of my own monitors, stuck in my arms, adhered to my chest. And, I just want to go home, and to work, back to normality, my own schedule, and family, and security. But, here I am on the fifth floor, in the cardiac unit of a hospital, staring at the stained ceiling tiles, wondering how they became stained – maybe a leaky water pipe overhead, servicing the sixth floor?
There’s a knock on the door of my private room, and I wonder if it’s good news or bad, maybe it’s solid food or more blood-thinning shots in my stomach?
“Come in,” I say.
“Mr. Smith,” the on-call doctor, Madeira, says in the most graveled voice I’ve ever heard, walking in with his clipboard, wearing a yellow tattersall oxford shirt that I recognize from L.L. Bean’s fall line some years ago, a shirt that I almost bought during my first semester working at the college, but couldn’t afford. “How are you?”
“I’ve been better,” I say, rolling over slightly, toward where he is on my left bedside. “How are my test results?”
“For whatever reason, your body isn’t producing enough blood,” he says, placing his clipboard on the counter in my room. “Your red blood cell count is exceptionally low.”
“I know, that’s why I’m here, Doc,” I say. “Delight me with something new.”
“Yes,” he says with a pained smile, as if hardly baring my sarcasm, standing beside my bed, an arms reach away, his hands crossed in front of his khakis slacks like an alter boy.
“What are all of the tests showing?” I ask. “You’ve taken nine vials of blood, performed an angiogram, a colonoscopy, a stress test, and had me drink mud while scanned by some nuclear machine – you must have at least found a button that I swallowed when I was two?”
“Well, yes,” he says again with a smile, glancing down at his shoes. “I’d like to give you blood.”
“Do you know anything more than you did yesterday?” I ask.
“Well, we’re still waiting for more results,” he says, reaching for the pager on his belt. “Excuse me, I need to use your phone.”
He walks around my bed, to the phone on my nightstand, and calls someone, explaining that it’s alright for a given patient to stop therapy. Then, he walks back around my bed, to his previous place, resuming his posture of his hands crossed in front of him.
“OK,” he says with that damn smile. “I’d like to give you blood.”
“We discussed this last night – can you tell me in no uncertain terms that it’s vital that I receive blood?” I ask.
“It’s in your best interest,” he says
“Look, again, unless you can assure me that it’s vital, then I’m not willing to take the risks of receiving blood,” I say.
“OK,” he says, now without the smile, impressing me that I’m a difficult patient. “You also refused your antispasmodic – is that correct?”
“Yes,” I reply.
“And, why is that?” he asks.
“I don’t take antispasmodics,” I reply.
“Why?” he asks.
“I don’t need them,” I reply.
“And, why is that?” he asks.
“I’m comfortable living with myself – I don’t need to alter my body or mind,” I say.
“Have you ever taken medication for your spasms?” he asks.
“As a child, and it made me a doped-up mess,” I say.
“Well, medication has changed in thirty years,” he says. “There are medications that can help you.”
“Help me with what?” I ask.
“Well, I see that you’re amazing adept at living with your condition,” he says, pointing from my bed to my manual chair, having seen me transfer myself last night. “But, medications could make you more comfortable, allow your legs to relax straight, for example.”
“The reason why my legs are pulled up toward my chest like this is because I am comfortable – it’s my body, in its natural state, whether or not it makes you comfortable,” I say.
“But, you take medication for your acid reflux – so you pick and choose your treatments,” he says.
“Acid reflux is a medical issue, my cerebral palsy isn’t,” I reply.
“And, how’s that?” he asks.
“My cerebral palsy is static, it doesn’t get better, or worse, and doesn’t require treatment – it’s like any other permanent physical characteristic, it just is,” I say.
“OK,” he says. “I’ll see you this evening.”
He leaves the room, and I try to relax, taking a deep breath, feeling the pinch of my I.V. sandwiched between my left forearm and thigh. But, then there’s a knock on my door.
“I forgot my clipboard,” the doctor says, walking by my bed, toward the counter.
“Robert, I notice a tracheotomy scar on your throat,” I say, making eye contact. “What’s that story?”
He stops in his tracks, crossing his hands in front of him, paused.
“Yes, when I was thirteen, I had a lung collapse, and removed, and had a trach for nine years,” he explains.
“I appreciate that,” I said.
He nods, picks up his clipboard, and heads for the door.
“So, you understand,” I say.
“No,” he says, glancing back at me, closing the door behind him, leaving me to return to the ceiling tiles.
“I’ve got an awesome idea for trick-or-treating this year,” I say to my 9-year-old as I roll into our kitchen, home from work.
“What’s that?” she asks, always eager to talk about Halloween.
“We’re going to go get me a costume,” I say, taking off my jacket, putting it on an empty kitchen chair.
“Cool – what are you going to dress up as?” she asks, pulling out her chair, sitting at the dinner table.
“I don’t know,” I say, “but here’s the kicker: I’ll dress up in a costume, and when you go up to the doors trick-or-treating, you point to me and say, ‘My brother is in a wheelchair, and he needs candy, too.’”
“I can’t do that,” she says.
“Why not?” I ask, pulling up to my spot at the table.
“Because it’s wrong,” she says, smiling.
“You’re the kid knocking on doors, asking strangers for candy – now that’s wrong,” I say. “Didn’t your mother teach you not to take candy from strangers?”
She tilts her head and just glares at me.
“Come on, it’s brilliant,” I say. “If we dress me up, too, we can get the same amount of candy in half of the time, or twice as much candy in the same amount of time as last year – it’s a math thing. And, some people might feel bad for me, your poor brother in a wheelchair, and give us double dips of candy – we could get exponential amounts of candy then.”
“Mom, Daddy’s trying to get me to cheat on Halloween,” she tells my wife who’s standing by the counter, preparing dinner.
My wife walks over to the table, and sets down my plate. “Leave the kid alone, and eat your dinner,” my wife says, always annoyed by my antics.
“Fine, maybe I’ll just go trick-or-treating by myself,” I mumble, looking down at my dinner.
“Good luck getting up the stairs,” my daughter whispers across the table.