The God Complex

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What follows has nothing to do with religion.

At this point in the evolution of my blog, I’ve managed to refrain from political commentary. Other than complaining about mind-numbing political ads, I’ve stayed off my soapbox (it’s not wheelchair accessible anyway). For one thing, I risk alienating at least 50% of my potential readers by spewing any political rhetoric, thereby detracting from my core message about living a contented life as a disabled person. However, I believe I can discuss the general state of politics without being political- without revealing if I am a democrat, republican, or something else altogether.

As I wander aimlessly through my day-to-day existence, I find myself drawn to certain types of people. I believe that there exists a continuum between those at one end of the spectrum who are open-minded and easily confess their ignorance versus people at the other end who are resolute in their convictions and believe they possess the answers to even the unanswerable questions. If this were a numerical scale from 0 to 10, I would be a solid three (closer to the wishy-washy end than to the know-it-all end), and would be most interested in spending time with other 3’s (plus or minus about 2 points, you know, give or take).

People can be open-minded to the point of being absolutely spineless, a 0 or 1 on my scale. The more intellectual folks in that group can make you think twice about any subject, but come off as a bit tiresome after a while. But I am more wary of, and more easily bored by anyone who thinks they have all the answers. So what is it about our democratic system of government that compels us to elect only politicians who are solid 9’s and 10’s, or at least pretend to be?

Our world – our economies, our societies, our environment – is so complex, isn't it absurd for anyone to claim to understand how it actually works? Yet, if a politician so much as changes her mind once or twice in her lifetime, or admits in public that he is undecided on an important issue, then we label them indecisive and disqualify them from public office. How did we get to this point? We are the voters, after all, so we have no one to blame but ourselves and our self-deluded concept that people who act as if they know everything actually do.

People who score high on my makeshift scale can be said to have a God Complex. They believe they have the answers to questions that are (currently) unanswerable by humans. Why can't we elect candidates who humbly admit they don't know the answers, but who are intelligent and open-minded, and will carefully and thoughtfully engage in trial and error analysis until an optimum, or at least acceptable solution is reached?

I will tune in to the weatherman, I will quaff a beer with the science teacher, I will vote for the politician who admits that they don't have the answers, but enjoy pondering the questions- the person who will only take action based on deliberate and unbiased consideration of the best possible information, but will course-correct as new evidence emerges. I'm acquainted with several of these people, but none of them would be crazy enough to run for political office. How do we change that?

Winston Churchill's famous quote is appropriate here: "It has been said that democracy is the worst form of government except all others that have been tried."

Much of our democratic political system is utterly insulting to our intelligence. I've mentioned the political ads in an earlier post, and here I've spoken to the fact that our candidates are not allowed to be flexible and thoughtful. So I have to believe that someday, probably later rather than sooner, democracy will evolve into something better than what it is today. At least I hope it does.

This rant was partially inspired from a Ted talk by Tim Harford. Please take a few minutes to listen to somebody who expresses himself a lot better than I do:

My Personal “Going Out of Business Sale”

I've owned more than my share of man-toys over the years. The minimalists among us might argue that this is nothing to be proud of. But I’d like to think that I owned my toys for only the best of reasons- to help me live my life to its fullest. I never felt like I was flaunting my financial success, or in any way being wasteful or frivolous. But that's just my take on the situation.

Over the last three years or so, I've been parting with these man-toys at a steady pace (I mean no offense to my female readers who also enjoy such items…it’s just that in my world these are principally male extravagances). As my MS has progressed, especially in my arms and hands, I've divested myself of the toys that I can no longer enjoy. I've held onto them as long as I could, employing adaptations where possible, until it just didn't make sense anymore or became a safety issue. Below is a brief summary of the items I've parted with:

Golf clubs- I had a love/hate relationship with this sport, but I did have one amazing shot, and wrote about it here.












Hunting Camp Lot- We sold our original hunting camp and purchased property to build a new one, but ended up selling the land so that I could buy my iBot wheelchair (arguably a crippled-man-toy). I still enjoy some limited deer hunting, which I wrote about here.












2 Snowmobiles and a covered snowmobile trailer- Snowmobiling was one of my greatest passions, and I wrote about it here.



















4WD, full size pickup- I loved this pickup, but after a while I couldn't manage to get up into the seat anymore.












Pop up camper- This camper and others before it were a significant source of good, wholesome family fun. Eventually I couldn't get up the stairs into the camper, so we sold it.












2 ATV’S and a double trailer- I used these ATV’s for recreational riding with Zach and for deer hunting. They gave me passage into the wilderness.  I sold them two years ago when I couldn't get on and off of them anymore, and had difficulty operating the controls.












Lawn Tractor- I just sold my lawn tractor this morning. Our lawn is not well suited for a big mower, but we bought it anyway when we moved into this house so that I could enjoy cutting the grass. Each year it became a little more difficult for me to get into and out of the tractor. Yesterday Kim and I attempted an overly-elaborate and ill-conceived boarding procedure that nearly resulted in her throwing out her knee and me crumpling to the floor. But we persevered, and I mowed the lawn one last time.












2 kayaks- I haven't sold these yet, but neither have I taken them out in two years. My kids keep promising that they’ll use them; I keep threatening to sell them for lack of use (sell the kayaks, not the kids…they are already 18+ years old).












Again, some would contend that ridding myself of all of these material possessions is not entirely a bad thing. Simplifying my life and impacting the environment less is to some extent noble. The other consolation has been the influx of cash that I've experienced each time I sold one of my toys, usually on Craigslist. This is not to say that I've been happy or even indifferent about losing the ability to enjoy any of these activities (except maybe golf), but the cash takes a tiny bit of the sting away. Imagine if I was required to pay to relinquish these life passions.

I must say that I'm pleased with how I've coped with these losses. I’ve not allowed myself to spend too much time lamenting my misfortune. I've simply accepted my fate and moved on. Despite these disappointments and others not mentioned here, and with the support of family and friends, I've continued to live a contented life.

Oh, there’s one more toy to discuss:

Handcycle- I've ignored my handcycle all spring and summer. I keep coming up with excuses, like it's too hot or too cold outside, or I'm too tired or that I need to save my energy for an activity later in the day. But I know what's really going on. I can’t face the possibility that, like all my other toys, I just can't play with this one anymore. My beloved handcycle has been a savior for me throughout my disability. I wrote about it here.












I have a plan. If I continue to simply avoid my handcycle, then I won’t be let down, hence preserving the notion that I can still ride it whenever I please. Up to this point in my ten-year MS ordeal I’ve not allowed myself the indulgence of denial. Maybe I will, just this once.

25 Years

25 Years ago today I validated the best decision I ever made, and became married to the love of my life, Kim.  I still can't believe how fortunate I am.  I love you honey.  Happy Anniversary.

To read more about our courtship, click here.

Change is Good! Well, Not So Much Anymore

“All change is not growth, as all movement is not forward.” Ellen Glasgow

For most of my life I've been a changoholic. Couldn’t get enough of it. Here are some examples:

Immediately after college, in 1986, I took my first job in Cleveland, a city I had never visited prior to my job interview, and where I was acquainted with no one. I just needed a change from Maine (which I returned to three years later).

In the year 2000, my wife and I decided to uproot our family from our hometown and move from northern Maine to southern Maine, just because we needed a change in scenery.

After 25 years of marriage, we have our fifth house up for sale, and are searching for our sixth. The longest time that we have lived in any house is six years. We renovate the houses to the point where they suit us perfectly, and then something changes.

When I was a working professional, one of the most universally dreaded events was a reorganization. But I loved reorganizations. There was usually something significantly wrong with the status quo business plan, and I always viewed these changes as an opportunity for us to get it right. Furthermore, reorganizations allowed me to put my mark on the new business strategy, instead of being constrained by an inherited one.

I could (try to) impress you with a psychological analysis of why I have always craved change, but that is not my point here. My point here is that my appetite for change has, well, changed.

Whereas change used to fuel my very existence, today I would be thrilled if nothing ever changed again. In the past, change delivered a mixture of the good and the bad, but on balance I felt it was a positive force. Change still brings a mixture of the good and the bad, but is now heavily slanted toward the bad.

Recent good change

1. Son graduated from high school
2. Daughter graduated from college

Recent bad change

1. Never mind. I won’t bore you with the litany of changes MS has ushered in.

Potential future good change

1. More weddings, graduations, and babies coming from our family's younger generation
2. Me winning the lottery

Potential future bad change

1. I won’t frighten/alarm/sadden you with a list of the changes MS has in store for me in the coming months and years.
2. Sarah Palin as President

I often sit here and think, “If the disease progression would just stop, I could be satisfied with a life like this.” After all, it’s not the devil I know that frightens me.

But what a self-indulgent wish this is. Doesn’t the cancer patient or the ALS patient feel the same way? Don’t the elderly? Doesn’t everybody to some extent? Since each day brings us closer to our inevitable exit, isn’t the desire for time to slow down or stop simply a manifestation of our survival instinct? When I begin to travel down this well-worn path I try to snap myself back to reality, and live in the present instead. I have mixed and temporary success with the snapping-back, but I keep working at it.

So how has change been treating you lately? Do you embrace it, dread it, or do you just roll with the punches?

Have I betrayed my childhood self? (redux)

I first published this post in 2010.  Today I dusted it off, spruced it up a bit, and again present it for your reading pleasure:
 
I can still remember the questions I pondered as a child (I was a frequent and vivid ponderer):

What will my job be when I grow up?
Who will I marry? (Will she be hot?)
Where will I live?
What will my kids be like?
Will I grow old?  How old?

I also recall some of the promises I made to myself as a child:

I will let my kids stay up as late as they want to.
I will eat dessert whenever I want to.
I will become rich.
I will become famous.
Nobody will ever tell me what to do.

I didn’t keep any of those promises.

Less evolved Mitch (Mitch of only a few years ago) sometimes felt guilty about failing to live up to my childhood expectations. More evolved Mitch understands that I hold no obligation to my childhood self. Screw him. He didn't know what he was talking about. He was just a kid. Granted, he was a darn cute kid, but a kid nonetheless.

We sometimes treat our childhood dreams with undue reverence.  These dreams are necessary from a developmental perspective (in order to become an adult, one must first envision it), but they should not be construed as a blueprint for life. Our juvenile aspirations are misguided because children cannot grasp life’s complexities, and don’t appreciate its subtleties. The degree of wisdom necessary to do so is acquired later in life, if ever.

In retrospect, these are the questions I should have pondered as a child:


Will I be lucky enough to find real love? (I was)
Will I have my health? (I did for the first 38 years)
Will I lead a happy and contented life? (I have)
Will I have a fulfilling career? (not really, but it paid the bills)
Will I be a good person? (with some exceptions, I think I have been)

And these are the promises I should have made to myself when I was a kid:

I will not presume that life owes me anything; any positive experiences beyond being born are simply frosting on the cake.

I will be a lifelong learner, a rational and open-minded thinker, and a candid, yet polite, communicator.

I will not waste precious resources on jealousy, hatred, or revenge.

I will try to do my small part to improve the human condition.

I will not blindly adhere to hollow societal norms.   
I will live each day as if it will be my last.
I will be true to my family and friends.

I will be reliable and humble.

I will have fun, lots of it. 
Even when life becomes difficult, I will try to persevere.

If I had made these promises to myself, could I have kept them? Let’s just say that at 47 years of age, I’m still a work in progress.

If young Mitch could have seen the future, I’m quite certain that he would have been disappointed with what he saw. But young Mitch wasn’t smart enough to appreciate what a good life looks like. How could he have? He was just a kid.

The Parable of the Farmer and His Four Sons

Once upon a time, in a faraway land called Happy Valley, there lived a good and honest sharecropper and his four capable sons, who were actually two sets of mirror-image twins. One set of twins was particularly sturdy and strong. They could stand up to anything. These brothers were so connected to one another that many considered them to be joined at the hip. The other twins were less strong, but more agile, and were best suited for complex farm chores. They worked hand-in-hand to assist the Farmer.

All of a sudden one of the particularly sturdy sons began to feel strange. He grew tired and listless. About a year later his sturdy twin began to feel the same way. They had each become lame. They continued to get worse and worse until after a number years they could not help out with the farm work at all. Luckily, the other set of twins remained healthy and used their agility to keep the farm moving.

About five years later, one of the agile twins began to feel weak, just like the sturdy twins had years earlier. And sure enough, after one more year, the other agile twin followed suit. Everybody slowly got worse over time. Today, the formerly sturdy and strong twins, who could stand up to anything, can't move at all and must be carried everywhere. One of the agile twins can still move around a little bit but can't accomplish much. That leaves all of the farm work for the healthier agile twin, but he is getting more lame every day.

So now the Farmer is relying on the semi-lame, agile twin and the goodwill of the farmer’s (lovely) wife to fertilize the soil, plant the seeds, and harvest the crops…of life.

The End (for now)

Cast of characters:

The sturdy twins – my left leg and my right leg
The agile twins – my left hand and my right hand
The Farmer – me

The moral of the story:

When things start to fall apart, you better make the most out of your remaining assets, and you better have a steadfast support system. “Buying the Farm” is to be avoided until all other avenues have been thoroughly exhausted.

Now that you’re privy to the subtext, feel free to go back and re-read The Parable of the Farmer and His Four Sons. It draws the arc of my life story these past ten years.

Oh the Trials and Tribulations, and the Rewards, of Disabled Travel: Part Four

The 10 best things about my recent vacation:

A Thousand Pretty Girls

Saturday night in Las Vegas is when all the beautiful people dress up and go out, and many of them strutted their stuff at the coolest new Hotel/Casino on the strip- The Cosmopolitan. Never in my entire life have I seen so many beautiful women in one place, and they were dressed to kill (we were not). Each lady arrived shrink-wrapped in the obligatory little black dress. It came in many shapes and styles, but only in the one color. Worked for me.

The Overall Accessibility of the Las Vegas Strip and Its Casinos

One of the reasons that I love the Las Vegas strip is that its newness lends itself to accessibility. I can wander up and down the strip without encountering sights that I cannot see, activities that I cannot participate in, or obstacles that remind me of my limitations.

Watching “Acoustic Soul” Play

My friend Dave has made a living as a musician in Las Vegas for over 20 years now. He’s been in some really cool bands, but this one is my favorite. Dave plays keyboards, the occasional guitar, and sings. The band has a charismatic lead singer and a drummer who used to play with somebody famous. But the star attraction is the violinist- Nina. A violin/fiddle player is a bit uncommon in a classic rock band, but Nina pulls it off as an alternative to lead guitar. I suppose it doesn’t hurt that she is drop-dead gorgeous. We watched them play at O'Sheas, on the strip. It's more like the kind of Irish pub you find at home (except for the gambling), and is a charming alternative to all the glitz and glamour of the big casinos. We ran into friends from Maine earlier in the day, and they met us at O'Sheas for an enjoyable evening listening to Acoustic Soul.

Our Hotel Room at NY NY Hotel and Casino

I've enjoyed some first-rate handicapped hotel rooms in the past, and I've endured some awful ones. The room that we called home for two nights on the Las Vegas strip was far and away the most accessible lodging that I've ever had, and I stole it for $53 per night through an internet deal! The room’s primary accessibility feature was its sheer size. If you want to impress me with your hotel room, first make the sleeping area and the bathroom absurdly large, which is precisely what NY NY did. The toilet and sink were accessible. The shower was a true roll-in style, and the handrails were placed in the proper locations. I could actually reach the showerhead and controls from the fold-down bench (not true of many supposedly accessible showers that I have come across). Well done NY NY!

Creating a Scene by Being in Balance Mode

There are two reasons I like to be in balance mode in my iBot. First, proceeding in balance mode allows me to be at eye-level with all of the walking people, including the person(s) I am with. Second, I am an iBot attention whore. I love shocking people and seeing their reactions when they notice a 200+ pound man coming at them on two wheels. I get a lot of peculiar looks. I hear a lot of remarks. Once in a while I speak with interested folks regarding the details of my iBot. If you are interested in helping to save the iBot, click here.

Balance mode just makes zipping down the street so much more fun than if I was in a traditional wheelchair.

Winning in Las Vegas

I'm not what you'd call a high roller, but I do enjoy playing blackjack and video poker. We were in Las Vegas for five days, and over the first four days I dug myself a pretty deep hole. I hadn't exceeded my gambling budget, but I used up most of it. Then, on the last day I began a winning streak. I recovered all my losses and went ahead by $50. I kept riding the wave, but then it started to turn again. I did a quick accounting and realized that I was up by $5 dollars for the week. I stopped right then and walked away a winner!

Wine Tasting Near Santa Barbara

We made a quick stopover in Santa Barbara and visited with my cousin Paulana and her family. We took a wine tasting tour of the surrounding vineyards, and although I can no longer consume much alcohol, it was great fun sampling the local wines, taking in the spectacular scenery, and enjoying the laid-back atmosphere of that region. All the wineries were accessible for the iBot.



Watching the Red Sox beat the Angels

Kim and I are both big Red Sox fans; I have the accessibility routine down pat at Fenway Park. On the night before we flew back to Maine from Los Angeles we caught the Sox playing in Anaheim, only 45 minutes away from the airport. It is a fine, modern stadium, and the people were all kind. They were particularly enamored of my iBot. We got there two hours early, as is standard practice when we attend games in Boston. We like to soak in the ambiance at Fenway before the first pitch. It's such an energized atmosphere, steeped in history (Fenway will celebrate its 100^th birthday next year). It was a bit different, however, watching a baseball game in Southern California. The experience was pleasant, but not high-energy. If Angels Stadium is Josh Groban, Fenway Park is Steven Tyler.

Visiting with Friends and Relatives

This is one of the primary reasons many of us travel, disabled or not. But people usually come to me in my relatively accessible home, as opposed to me going to their homes. It's particularly rewarding, although admittedly exhausting, when I decide to go out and do the visiting myself. It makes me feel, if only temporarily, like a fully capable human being.

It was wonderful seeing all of you in April. Thank you Dave, Gail, Wayne, Joan, Paulana, Chuck, Aunt Vivian, and everyone else for your hospitality.

Going Home

I can only recall one vacation where I wasn’t ready to return home by the end. I've always loved to get away see and do things that I just can't see and do at home, but I like to get back to what I call my pathetic little life. I don’t mean pathetic in terms of my disability. I use this exaggerated phrase to describe a set of life routines, personal relationships, familiar places, and accumulated belongings which, although it may seem trivial to anyone else, embodies my conscious existence. I crave the excitement of occasional new adventures, but I'm always ready to go home at the end. Aren’t you?

In Summary…

I’ll bring this series of posts to a close by thanking the person who made it possible. I don’t travel easily or lightly, and everything from getting me dressed to getting me in the van to helping me climb stairs in my iBot fell on Kim’s shoulders. I’d like to think that she accomplished all of this while still managing to have a good time herself. Thanks for a memorable vacation Kim. I love you.

Oh the Trials and Tribulations, and the Rewards, of Disabled Travel: Part Three

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Per the title of this series, there are some rewards associated with disabled travel. Is it time to discuss those? No, not yet. Maybe next post.

Here are two more cases from my “trials and tribulations” folder.

The first night we arrived in Las Vegas, my friend Dave took Kim and me out to his favorite Italian restaurant. One of the nice things about exploring Las Vegas with a local resident is that you experience more than simply the glitzy mega-casinos on the strip. We enjoyed a lovely dinner and then walked (and rolled) down the street to a locals’ bar called Roadrunners. Naturally, we were anxious to begin squandering our hard-earned (and over-taxed) money in the shadowy world of Las Vegas gambling. The unwritten rule in Vegas is that if you sit at a bar and put money into a video poker machine, you get free drinks. Because we enjoy video poker anyway, we didn’t pay for many beverages (not that my current drinking habits result in a significant bar tab).

Eventually, as always seems to happen, and as I probably write about too often, I needed to use the bathroom. This particular establishment was of a size and age that would suggest accessible restrooms. I found the bathroom and was pleased to see the universal handicapped symbol on the door. I went in and noticed a stall at the far end, then wheeled up to it. It was not accessible – not even close. I looked around for the handicapped stall that had warranted such boasting on the bathroom door, but there was none. Liars!

As the beer continued to work on my bladder, I made the command decision to seek out a bathroom at one of the nearby establishments. Don’t worry; this was not a scary neighborhood.

I left the Roadrunner and zipped across the street to a convenience store, to try their bathroom on for size. When I exploit a business in this manner, I feel obligated to purchase an item from them. I mean, why should I benefit from their facilities without compensating them, if only in a minor way? But this time I took a stand, if only a minor one. Should I be required to pay to use the bathroom when everyone else gets to use one for free? No. So instead of purchasing an item that I didn't need or want, I gave a heartfelt “thank you” to the clerk and headed back to the Roadrunner. He didn’t seem to mind.

I had now frittered away 25 precious minutes of vacation time with my wife and friend. Unfortunately, this is not an uncommon occurrence when I go out. As I’ve written before, so often my excursions into the world of the walkers become all about the bathrooms.

The next day we decided to spend some time with nature. Don’t laugh. There is more to Las Vegas than just the man-made glitz. It is smack in the middle of a desert – and deserts contain fascinating ecological and geological systems. They are particularly enchanting to those of us from the East Coast who rarely see this type of terrain. We visited a National Conservation Area called Red Rock Canyon- only a 30 minute drive from Dave's house. Dave knew that there were some hiking trails at the park, and he vaguely recalled that some of these trails were fairly flat. Based on his description, I thought that there was a reasonable chance that my iBot could handle the challenge. I also knew that if there was even one insurmountable obstacle, maybe a boulder in the middle of the trail or a fallen tree that any walking person could easily step over, that would end my hike.

We drove around the loop road and took in the beautiful scenery. Eventually we parked at a trailhead and decided to try our luck hiking. We had brought Dave's beautiful dog, Kayla, with us, as she is an accomplished hiker and an all-around pleasant companion. From where we parked, the trail appeared welcoming enough for my four-wheel-drive iBot wheelchair.





We made it around the first bend in the trail, and there was the ditch. It was good going before the ditch and good going after the ditch. If not for this obstacle, I might've been able a hike a considerable distance. But instead, my hike was complete after only 200 yards. If I was of a different mindset, or possessed a certain disposition or temperament, I might've let that ruin my day, or at least ruin my trip to Red Rock Canyon. But because my expectations were modest and realistic, and because I've coped with situations like this in the past, I shrugged it off and we continued our enjoyable drive around the park.

By making too much of accessibility-related frustrations, we instinctively avoid exposing ourselves to the risk of repeated failure, and miss out on potentially life-affirming experiences. For every ten of these (relatively) daring quests that I attempt, I probably fail seven times. But the three victories I enjoy render the misadventures insignificant and forgettable.

To be continued… Click here

Oh the Trials and Tribulations, and the Rewards, of Disabled Travel: Part Two

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re·source·ful·ness - ability to deal skillfully and promptly with new situations, difficulties, etc.

Disabled travel is all about resourcefulness. When I'm at home we deal skillfully and promptly with new situations and difficulties on a daily basis. But home is a relatively static and predictable environment. On the road, you better eat your recommended daily allowance of resourcefulness for breakfast.

When planning our recent West Coast vacation, because of some intended side trips, it was clear that we would need some sort of rental vehicle. When I traveled on business using my wheelchair, before my disability retirement, I would routinely lease a wheelchair accessible van from companies like wheelchair-getaways.com. The Avis’s and Hertz’s of the world do not get into this business, and in fact will refer you to a local wheelchair van company when asked.

My business travel experiences with these local companies were, by and large, excellent. The only problem was the cost (which my company paid, no questions asked). These rental companies hit you up for an airport pickup and drop-off charge of $50 or $75 each way. The daily rental costs were between $100 and $120. And if you even thought about dropping off the van in a city other than the one where you picked it up, you could count on paying the cost of somebody to drive or fly to that other city to retrieve the van. Since I was flying into Las Vegas and out of Los Angeles on my recent trip, I was quoted a drop-off charge of an additional $500.

Isn’t it wonderful how rental vehicles cost more for disabled people, yet, on average we have significantly lower income than healthy people? This is just another example of the hidden, non-reimbursable, non-tax deductible costs of being disabled (especially if you want to get out of your house and engage in the world).

I couldn't afford this extravagance on my own dollar. So we became resourceful. We assumed that if we could rent a standard minivan with stow-and-go seating, then we could stow the middle row of seats and utilize our 5 foot portable ramp to get the wheelchair into the van. Even though the stow-and-go seating is common in minivans, it turns out that rental car companies don't like to be told exactly what style of car that you need (how presumptuous of us to be so demanding).

You should've seen Kim and me trudging from baggage-claim to the sidewalk outside of Las Vegas airport. Because of all my disability stuff, we don't travel lightly. Picture this: I am in balance mode in my iBot, leading the way through this busy airport. Kim is pushing my manual wheelchair with her left hand. In that wheelchair are four over-stuffed pieces of luggage. In her right hand is a 5 foot long, folding, aluminum ramp. Kim is too cheap to have allowed any of the professional porters to help us.

Quick side note: Kim probably spent less than $500 on her entire wardrobe (not just the clothes she brought on this trip), including shoes. I’m a lucky man.

Kim heaved me and all of our goods on the sidewalk, returned to the baggage claim area, and took the shuttle bus to the Enterprise Car Rental office, which was of course off-site. Thank goodness for cell phones, as we stayed in communication, fearing a potential, last minute clusterfuck.

We had been told various stories by Enterprise employees regarding the likelihood that we could get the type of minivan that we needed. Some employees had told us it was a 50-50 chance, and there was nothing they could do about it. Other, more compassionate employees had told us that they could almost certainly accommodate our needs. We chose to believe those employees. Kim, usually mild mannered, is not to be trifled with when her crippled husband is beached on the sidewalk in Las Vegas with all of our baggage.

Not to worry. The agent at the counter was very helpful and got us the exact van we needed. Or, at least we thought we needed that type of van. We had not practiced our idea on an actual van, so we were winging it.

Even though things went very smoothly with Enterprise, it still took Kim almost an hour from the time she dropped me off at the sidewalk to the time she pulled up beside me in the rental van. Because this was Friday night in Las Vegas, I was witness to all of the beautiful people overrunning Sin City for their outrageously extravagant weekends. It was people-watching at its finest. I didn't recognize any particular celebrities, but many of the people that I saw were obviously from the privileged class.

When Kim pulled up to the curb at the Las Vegas airport we surveyed the situation. I positioned the wheelchair as close as I could to the open door of the passenger front seat. I attempted to transfer from my wheelchair to the passenger seat, but I could only get in a position where I was leaning against it. Kim then lifted both of my legs off the ground and placed them in front of the passenger seat, while I simultaneously pirouetted my body 90 degrees counterclockwise- and me, never having taken a single ballet lesson.

I'm fortunate that Kim is no delicate flower. The girl has pipes- Michelle Obama style. We must have performed this elaborate transfer at least 40 more times that week.

If the passenger seat had been an inch higher off the ground, this type of transfer would not have worked. Yet, as we planned our vacation we never doubted our resourcefulness. If this plan had not worked, we would have figured something else out.

To be continued...click here

Oh the Trials and Tribulations, and the Rewards, of Disabled Travel: Part One

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lo·gis·tics [loh-jis-tiks, luh-]  the planning, implementation, and coordination of the details of a business or other operation.

Disabled travel is all about logistics.  When I’m at home, it takes planning, implementation and coordination of details just to get through the day. But home is a relatively static and predictable environment.  On the road, every activity is untested, untried, and fraught with logistical challenges. 

With disabled travel, there are the macro-logistics, such as flying in an airplane, and there are the micro-logistics, such as getting close enough to the hotel’s bathroom sink to brush your teeth. Each travel day is filled with planning, creativity, persistence, and most of all – patience.

It’s so much easier to just stay home.  But hey, where’s the challenge in that?

I knew from previous experience that the best place for me to sit on a Southwest Airlines plane was in the front aisle seat, on the right-hand side. This seat selection has served me well because it is easy to transfer from the special aisle wheelchair (pictured to the left) into this airplane seat, and because this seat is nearest the fore bathroom. In the past, if I was close enough to the bathroom I could manage to get there in a pinch.

 

However, on my most recent plane trip, due to another year’s worth of disease progression, there would be no hope of getting to the bathroom unassisted, even in a pinch.

So I plopped into my customary seat at the front of the plane, and shortly after takeoff I asked Kim to check out both the fore and aft bathrooms for me.  They each had a handicapped symbol on the door, but they were both as tiny as could be. So what qualified them as handicapped accessible? I guess it was the handrail beside the toilet.

I quizzed the flight attendant. “What if I need to use that bathroom?" I asked, pointing to the front of the plane. 

"We have an onboard aisle wheelchair that we can transfer you to, and then we we'll wheel you to the door of the bathroom, and you will have to transfer in.” Note that the aisle wheelchair would not fit into the bathroom at all. 

I think this may have been logistically possible, but in my mind it was highly undesirable, as the other 150 passengers on the flight would be gawking at me the entire time.  Kim might even have to stand at the open door and help me with my trousers.  I just didn’t know.  Maybe it would be slick.  Maybe it would be a fiasco.  I’m not typically self-conscious about being disabled in public, but I have my limits.

 

As a precaution, I had refrained from drinking any fluids on the morning of my flight.  On our two hour flight from Manchester, New Hampshire to Chicago, I made it okay. In the Chicago airport I used the bathroom, and again refrained from drinking liquids in anticipation of my four hour flight to Las Vegas. Again, it worked. On the return flights I was once again able to manage my bladder accordingly. 

Don't get me wrong; I love Southwest Airlines. In all other respects they take great care of me when I travel. I seriously doubt whether any airplanes actually have real wheelchair accessible bathrooms. Readers, do you know of any?

The entire service industry is woefully unprepared to discuss individual access issues with disabled people or their caregivers. I spoke with two separate Southwest customer service personnel in the weeks leading up to the flight, but they both had it wrong.  Each of them assured me that at least one bathroom on every plane was truly wheelchair accessible.  This is a common overgeneralization.  The term “wheelchair accessible” has as many shades and colors as the leaves in this photo.   

For example, I will sometimes call a restaurant that I've never been to and ask them if they are wheelchair accessible.  If they say yes, I ask for details.  I try to engage them in a conversation about how I would get from the street to my table, and from my table to the bathroom. I don't know how many times I've been somewhat satisfied by the discussion, only to encounter a surprise when I get there. Maybe there is a hallway that is too narrow, or maybe there is a bathroom stall door that opens in instead of out. It can be quite frustrating, but not so frustrating that I vow to “just stay home next time.” 

I appreciate how difficult it must be for customer service personnel to put themselves in the mindset of a disabled person.  But I wish they would do a better job of it, if not for everyone, then at least for me J

 

To be continued…click here