Giant Cosmic Crap Wheelchair Van

I think it was the day I drove through a tropical thunderstorm with my window down that I knew. I didn’t want buckets of rain soaking me to the skin as I crossed the McArthur Causeway, but I had to see in order to drive. This required sticking my head out the window because my windshield wipers had failed. And they picked a mighty inconvenient time to go on the fritz.  

 

Something in my gut told me that my $60,000+ customized wheelchair-accessible was a lemon. But it wasn’t always like that. The first couple years were magical.

 

I remember my joy on the day I picked it up. Finally, the two and half years I’d spent convincing the state vocational rehab folks I needed the van paid off. They agreed that -- as a power wheelchair user -- I needed the van to stay employed. They agreed to pay for the customized lift, wheelchair lock-down system and driver’s seat if my husband and I bought the Dodge Grand Caravan. In addition, the state got to select the van conversion provider.

 

This left me with little choice in the process, but that was fine with me. I simply couldn’t go on driving a Chevy Cavalier that could not accommodate my power chair. I had to leave the wheelchair at my office, which meant I had no chair to use otherwise. Any place I needed to go outside the office left me no choice but to hobble around on crutches. I could only walk short distances and couldn’t carry anything with me. It was an arrangement that had become unworkable.

 

Those first couple years with the van, I felt like a 16-year old who’d just gotten her license. Gone were the days when I sweated going to off-site meetings and trainings for work. Now that I could transport my chair in the van, a whole new world had opened up for me.  On my off time, I went to movies, poetry readings, malls and restaurants – things impossible for me in the past. I could grocery shop, pick up dry cleaning and run to the drugstore by myself, tasks I desperately wanted to contribute to ease my husband’s caregiver burden.

 

All was smooth sailing until we moved from Ohio to Miami. Then it was as if some evil cosmic force awoke and took a humongous crap on me and my van.  A huge, stinky crap that coated the outside and inside, smeared all over the Dodge factory parts along with the after-market conversion parts. Let me count the ways:

 

• The customized and very pricey automatic door that opened to deploy the ramp broke like 800 times, often trapping me in the van. (Okay, maybe it was only 80 times.)
• An improper sealing job at the factory allowed water inside resulting in a stinky mildew bloom in the upholstery.
• The ramp motor died twice.
• Both the driver’s and passenger’s windows dropped down into the doors without warning.
• The left turn signal came and went as it pleased.
• The fuel pump died.
• The relay switch that powered the sliding door’s remote control worked some days but not others.
• The van frequently overheated, overflowing the radiator.
• The customized electronics that allowed me to switch gears at the touch of a button got so out of whack that I had to take the bus to work while my van was in the shop – for six weeks.
• The custom driver’s seat broke a gear and wouldn’t move.
• The radio died on my birthday in 2001: Sept. 11.
• The fuel line went into vapor lock numerous times, utterly disabling the van. Sometimes it mysteriously fixed itself after the van burst forth with a giant farting backfire.
• A young man on a 10-speed heading to his South Beach waitering job slammed into the van’s passenger side, knocking off a protective underside panel.
• Two different drivers backed into me.   
• Did I mention Dodge issued two recalls requiring significant repairs?

 

Now that I’m on my second van, I think back on that big, purple hunk of junk. There were times I wanted to put a concrete block on the accelerator and let that van fly into Biscayne Bay. I still hold it responsible for most of my gray hairs.

 

Yet it gave me freedom in life that I could never take for granted. I’m forever grateful, gray hairs and all.

  

WHEELCHAIR THEME MUSIC, OR CONTEMPLATIONS ON PSEUDO-INDUSTRIAL NOISE, SOUTHERN HIP HOP AND SONGS COVERED BY LEONARD NIMOY

Some days, I think I need theme music. Not because I’m important or special or deserve attention. In fact, if it were up to me, I’d make my way through the world largely unnoticed.

But because I use a wheelchair for mobility, the world has chosen for me. Often, I get stared at, but that’s a given. What I’m referring to goes beyond that.

Many days, I’ll be rolling down the sidewalk minding my own business, steering plenty clear of pedestrians. Yet someone half a block ahead will see me approaching and yank their child out of my oncoming path. I mean darn near tear the kid’s shoulder out of the socket. Sometimes the sight of the poor little kid flying through the air jolts me so much, I whip around to see if I’ve unknowingly left a row of maimed bodies behind in my wake.

Then there’s the wannabe comedians. You know the guy at the party who keeps repeating the same corny jokes that were only mildly funny the first time he told them? Well, that guy follows me around. I can always pick him out of the crowd by the goofy smile on his face as he sees me approaching. He thinks he’s clever, yet I know exactly what he’s going to say before he says it:

“Hey, little lady. Better slow down – you’re gonna get a speeding ticket!”

Someday, I’ll get up the courage to holler back:

“Hey, doofus. Better stop passing gas – you’re gonna get a farting ticket!”

But perhaps simply broadcasting theme music from my wheelchair as I motor along would be the way to go. So, I’ve been researching songs that might work.

The first one I considered is a song by the noise rock band, The Jesus Lizard, called “Wheelchair Epidemic.” How perfect is that? I mean, it’s got the word “wheelchair” in the title, for Pete’s sake. Plus, it’s got a hard driving beat and true to its guitar-driven pseudo-industrial noise roots, the vocals are nearly indecipherable.  

But before I downloaded it and blasted it on my Beats Pill, I thought I should check out the lyrics online. Here’s the first verse:

“Hep hep, hep hep, hep hep, hep hep

 Your words are broken, you got the flu, that tour of smokin' your times are through

 Your body's achin’, you need a rest, your body's achin', take a rest I say

 Ah ah, ah ah, ah ah, hey”

Then the “hep hep” picks up again and the F bomb is dropped. I didn’t have a problem with the any of that. But then I discovered the second verse includes an ugly homophobic epithet.

No, thank you. Back to the drawing board.

Perhaps I would do better with a song about rolling along, and I immediately thought of Chamillionaire’s “Ridin’”. Who could forget those immortal Southern hip hop lyrics:

“They see me rollin’/They hatin’/Patrolling they tryin’ to catch me ridin’ dirty.”

But then I remembered the song also uses a word, frequently found in rap music, which makes me very uncomfortable.

Un-uh. I had to try again.

What about reaching further back into music history for a song with a more subtle message? I racked my brain. The only thing that came to mind was a song written by country and western music legend Mel Tillis, made famous by Kenny Rogers and the First Edition. The song charted number six on the Hot 100 in 1969. Anyone reading this blog remember “Ruby Don't Take Your Love to Town”?

I hadn’t listened to the song in ages, but recalled its indirect reference to the Viet Nam War. That appealed to the Boomer in me. A quick search online revealed that “Ruby” has been covered by many artists, including Waylon Jennings, Roger Miller, Carl Perkins, Cake, The Killers – even actor Leonard Nimoy.

I queued up “Ruby” on Spotify, then it all came rushing back. The song’s about a paralyzed guy in a wheelchair who can’t satisfy his woman, so she steps out on him to get her needs met. Then he fantasizes: “(i)f I could move I'd get my gun/And put her in the ground.”

Yikes. Looks like I’m going to have to write my own dang theme song.

THE MEANING OF (MY) LIFE: OR, THAT CHICK’S GOT CRIP CRED OUT THE YIN-YANG.

I’m ecstatic, ebullient. Over the moon.   My mind is blown and my heart is a-flutter.

You see, I’ve had an epiphany of Biblical proportions. I have discovered the meaning of life, or rather the meaning of my life.  And I didn’t have to go to an ashram in India to do it. It simply came to me out of the blue.

I now understand why I was put on this Earth, and it’s not about my own personal journey of self-discovery or growth. In fact, it’s not about me at all.

I exist solely to make non-crips feel good about themselves.

That’s right: the purpose of my existence is to reassure those who don’t (yet) use canes, crutches or wheelchairs to get around.

Why, you might ask, do those folks – the ones who don’t move through the world in gimpy fashion – need reassurance?

I’ll tell you: when you can get out of bed in the morning without pain and go about your day without restrictions in movement, it’s pretty dang scary.

I mean, who wouldn’t be rattled by having no worries about whether your caregiver will show up on time because you don’t need a caregiver at all? Putting on your own clothes and making your own breakfast is stressful. Not having to rely on para-transit to get you to work on time is nerve-wracking.

OK, I’m just going to say it: non-gimps have a pretty crappy life.

But, see, that’s where I come in. I am absolutely, positively, undeniably disabled. For one thing, I use a power wheelchair for mobility. And on the rare occasions that I stand up and take a few steps on my own two feet, ain’t nobody gonna mistake me for an Olympic athlete.

In fact, I wouldn’t be surprised to someday overhear someone whisper: “Say what you want to about Heidi, but that chick’s got crip cred out the yin-yang.”

Clearly, my life’s purpose is not to be a valued, autonomous human being with my own meaningful existence. No sir. I was conceived, raised and put out into the world to serve as an example of what NOT to be. Of what to be thankful that you’re not. A sort of goofus gimpy human being to serve as a foil for the non-gimpy gallant ones.

I’m a living embodiment of the tried-and-true bromide: “I was sad that I had no shoes until I met a man who had no feet.” (In this case, I’m the one who has no feet. Except in reality, I do have feet, though they’re mangled and pretty messed up.)

Imagine, a half-century I’ve spent contemplating the purpose of my existence. All the wisdom I’ve sought from the teachings of philosophers and sages. Countless hours of ruminating.

All along the answer was to be found in the pity-filled gazes of non-gimps not-so-secretly grateful that they’re not me.

Thank you ever so much, all you graceful-gaited, altruistic non-gimps.

Without you, I would be nothing.

BAD VACATION, Part Two

The next day, my husband's job interview went just fine. We were turning the tide. I called the airline again. Perhaps they had good news. While the customer service rep had me on the phone, he noticed I was from Ohio.

 

"I see you're from Columbus, ma'm," he said.

 

"Yes, that's correct," I responded, thinking this info would help him locate our bags.

 

"I'm a celebrity of sorts in McConnelsville, Ohio," he claimed.

 

"Oh, really?" I replied, just to be polite.

 

He continued: "Why yes, my four-year old daughter was murdered there."

 

When I hung up, we were no closer to getting our luggage, and I was creeped out by the child murder anecdote.

 

Our third night was spent in a different hotel: this one at ground zero for South Beach nightlife. How cool! How fun! How freakin' noisy! We had failed to consider there would be a DJ jamming tunes until 4am around the pool, a pool that was separated from us by one thin pane of glass. Even our portable white noise machine was no match.

 

The next morning, we rose at 7am to head to my job interview. I hoped my under-eye concealer would hide the dark circles. Okay, we'll be fine. We'll re-group.

 

Uh, no. The only elevator in our historic art deco hotel was sporting a big "out of order" sign and rather boastfully, I might add. Like a teenage boy flaunting his first hickey.

 

Now that we were facing four flights of hotel stairs, the airplane's one flight seemed, by comparison, like a walk in the park. Or a roll to the tarmac.

 

I stayed put while my husband descended the stairs to the lobby registration desk. Fifteen minutes later, we were both descending in the elevator. Seems "out of order" really meant "routine elevator maintenance."

 

I made it to my interview, which went well. That was the watershed moment of the trip; we were certain of it. We passed the remainder of the day pleasantly, shopping, dining and strolling around Miami Beach.

 

The next day, we changed lodging again. We had planned months ago to stay at three different hotels so we could write about our trip and sell it as a free-lance travel story.

 

The last hotel was a beautiful art deco property from the outside, but careworn inside. The lobby was dingy and wheelchair access was via a luggage cart ramp on the side. But we were committed to pulling this trip out of the crapper. We even resolved to ignore the room's imperfections: blood on the box springs, smashed insect stains on the wall, threadbare carpet and an unpleasant conglomeration of odors not in our best interest to contemplate.

 

We stayed out late, enjoying a balmy Miami night, and climbed into bed around 1am.

 

Just as we'd begun to drift off the sleep, we were startled by a very loud, very shrill emergency klaxon. Whatever could it be? A fire? An emergency? A hurricane four months before the start of the season?

 

We couldn’t ignore it, and threw on clothes. Down to the lobby we went, along with many other guests. “False alarm,” we were told by the same trio of hotel staffers who were the only ones working. The klaxon stopped.

 

Annoyed and weary, we returned to our room. Once again, we laid down our heads.

 

Ten minutes later – you guessed it – the klaxon sounded again.

 

Now we were very annoyed, weary and worried the elevators might automatically turn off if this was a real fire, even a small one. We pulled on our sweats and went back down to the lobby.

 

In between answering one call after another, the guy at the front desk looked up and emphatically told our bedraggled group of tired guests, once again, this was a false alarm. But this time the klaxon continued.

 

What to do, what to do? We decided that fate was telling us to get the hell out of Dodge, so my husband when back upstairs to pack our things. I stayed in the lobby, where I watched a hotel staffer run to the hotel’s front entrance just as Miami Beach Fire/Rescue arrived.

 

“It’s a false alarm,” cried the staffer, using his body to try to block fire service personnel from entering the hotel. He did not succeed.

 

Soon we made our escape, then spent the night sleeping in the airport and caught a plane home the next morning.

 

Some folks would forget such misery after returning home, or would simply re-tell the story for laughs at parties. We are not such people.

 

Over the next week, my husband and I filed complaints about the hotel from hell to every regulatory agency we could think of, including the Miami Beach Building, Code Compliance and Fire departments.

 

We thought this would probably take us to the point of closure. Alas, no. The owner of the hotel with the non-stop fire klaxon called and left a lovely message on our home answering machine. In a decidedly threatening tone, he told us that he knew we’d filed the complaints and that we better “watch our backs.” After hearing his message, we filed a complaint with our local police. We never heard from him again.

 

As for our bags, they were finally located by the airline one month to the day after we’d filed the lost luggage report. Fed Ex delivered them completely intact, everything inside just as we’d packed it. No explanation.

 

Guess they just went “round and round” somewhere for a month.

THE PERILS OF OVERTHINKING

Often, life is about simply putting one foot in front of the other -- without tripping yourself -- as you move from Point A to Point B. I don’t care for tattoos, but I’m tempted to have that statement memorialized on my arm.

 

I’m what’s called, in psychotherapy parlance, a ruminator. I tend to over-think and rehash things in my mind. My natural urge is not to move along the shortest line between two points but rather to take a tortuous route with lots of tangential side trips and backtracking.

 

I spend too much time inside my own head and not enough time living in the moment. I do this partly because it’s in my nature. But I also attribute it to my disability.

 

I have orthopedic issues; my mobility is quite limited. And this limits my options for physical activity. Other than walking a few steps now and then, my only viable exercise is adapted aquatics. While I love getting in the pool and moving through the water, I yearn for unadulterated, naked speed.

 

In the first eight years of my life – before arthritis came into the picture – I loved riding my bike. I would seek out large, empty parking lots in which I could pedal for all I was worth. I was enthralled by the feeling of zooming through space with nothing between me and the air.

 

When I meditate and tune out the world, I can recall what it felt like to run. The synapses fire and little smatterings of memories return. I’m once again a little girl in sneakers aware of nothing but my body’s forward motion and the emotional thrill it brings.

 

Sometimes I’ll even remember the long-lost joy of climbing trees. Once again, I’m straining with all my might to reach an overhead branch. My shoulders feel like they will pull from their sockets. Then I’m 20 feet above the ground in a maple tree that feels like the top of Everest. It’s a rush of joy, fear, and sheer power. It feels as if anything is possible.

 

To be clear, I don’t miss physical activity because I see myself as somehow broken or because it would make my life more meaningful. I simply want, from time to time, to get off the hamster wheel of mental rumination. I want to move without thinking.

 

I want to simply feel.

A TRIBUTE TO STELLA YOUNG

She was slight of stature and made her way through life on wheels, but she was a force to be reckoned with.

 

Stella Young was a feminist, disability activist, comedian, writer, atheist, Aussie and avowed knitter. She embraced the term “crip,” turning it back on the establishment. She refused to play the role that society tried to impose on her: the cute, demure, little girl in a wheelchair.

 

Young once wrote: "I am not a snowflake. I am not a sweet, infantilizing symbol of fragility and life. I am a strong, fierce, flawed adult woman. I plan to remain that way, in life and in death."

 

Sadly, her death came all too soon. She recently passed away, suddenly and unexpectedly, at age 32.

 

Young lived with the challenges of osteogenesis imperfecta, a condition that affected her connective tissue and made her bones vulnerable to fractures. But that was hardly the thing that defined her.

 

She didn’t shy away from and the truths she knew needed to be told.

 

Young often spoke out against "the soft bigotry of low expectations" people with disabilities encounter.

 

"It speaks to this kind of assumption that people with disabilities are 'brave' because our lives are horrible and that's not true at all," said Young.

 

In a TED talk, Young referred to the trite phrases -- such as "your excuse is invalid" and "don't quit, try" – that accompany photos of disabled people online. She found them annoying, labeling them “inspiration porn.”

 

"The purpose of these images is to inspire you, to motivate you, so that we can look at them and think, 'Well, however bad my life is, it could be worse. I could be that person.'"

 

In her TED talk, Young expressed disgust for the bromide, "The only disability in life is a bad attitude:"

 

"No amount of smiling at a flight of stairs has ever made it turn into a ramp. No amount of standing in the middle of a bookshelf and radiating a positive attitude is going to turn all those books into Braille."

 

But Young didn’t lambaste only greeting card-worthy clichés. In an open letter that she wrote to her future 80-year old self, she spoke of her struggle with disability identity and self-acceptance. 

 

“Remember those days back before you came out as a disabled woman? You used to spend a lot of energy on 'passing'. Pretending you were just like everyone else, that you didn't need any 'special treatment', that your life experience didn't mean anything in particular. It certainly didn't make you different from other people. Difference, as you knew it then, was a terrible thing. I used to think of myself in terms of who I'd be if I didn't have this pesky old disability.”

 

Thank you, Stella, for reaching out to disabled people struggling with the shame we’ve internalized from society’s devaluation of us. Thanks for your fearless advocacy. For not pulling punches with your words.

 

Stella is the Latin word for “star.” Although Stella Young has died, her ideas will burn brightly for eternity. 

VISITABILITY -- MORE FREEDOM OF CHOICE

“We shape our dwellings…and later our dwellings shape us.” – Winston Churchill

Housing is the place we make our home, and home is a highly personal space where we make our lives. Home is an inextricable part of our identity. It becomes who we are and what we’re about.

 

Neither the ADA nor the Fair Housing Act requires accessible features in single-family homes built by private developers. Why does this matter? Because 69 percent of all housing units in the U.S. are single-family homes.

 

That means more than two-thirds of the housing in America is not required to be accessible to people with disabilities.

 

Visitability is an international movement to change home construction practices so that new homes offer three specific accessibility features. It’s similar to universal design, but very focused in scope and more about social reform. The three basic elements found in most visitability laws are:

• At least one zero-step entrance on an accessible route leading from a driveway or public sidewalk.
• All interior doors providing at least 31 ¾ inches (81 cm) of unobstructed passage space.
• At least a half bathroom on the main floor.
   
  Visitability is not about complete residence accessibility but access to principal spaces. Other features -- a roll-in shower or accessible kitchen features -- are typically not requirements found in visitability laws.
   
  In a study conducted by AARP, 90 percent of people ages 65 and over want to continue living in their current residence as long as possible; they want to age in place. In the U.S., more than one million households with a person with a disability over the age of 65 are inaccessible. As more Baby Boomers struggle with mobility, the numbers will only increase.
  BUILDER Online, a publication aimed at home builders, says U.S. Census data shows the number of Americans 65 and up will rise significantly between now and 2020. This means they’ll be an upswing in the desirability of aging-in-place home features accompanying the increase of multigenerational homes. Demand will only grow for residential designs that anticipate changes in health, vision or mobility. Such features ensure that homes are not only safe and comfortable, but also aesthetically pleasing.
  Such features include:

• Main living areas on the ground floor
• No steps between living areas
• Hallways at least 4 feet wide
• Interior doors 36-inches wide with levered hardware
   
  These features provide a basic shell of access to permit formerly non-disabled people to remain in their homes if they develop a disability, rather than forcing them to do expensive renovations, live in an inaccessible home which endangers their health and safety, or move from their community into a nursing home.
   
  Folks undergoing physical rehabilitation from an injury or illness can return home earlier, continuing their rehab on an outpatient basis. Designing for visitability is also convenient to people without disabilities who use strollers or carriages. It certainly makes it easier to move furniture or bring in a load of groceries.
   
  And true to its name, visitability make it easier for people who develop a mobility impairment to visit friends and extended family rather than having to turn down invitations, or not be invited at all.
   
  I can already hear the naysayers complaining that visitability equals utilitarian ugliness. Truth is, houses with visitability features are usually indistinguishable from those without them.
   
  Other objections? Check out 9 Myths and Facts About Visitability: http://concretechange.org/visitability/9-myths-and-facts-about-visitability/