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.

  

UNBROKEN

Dear America:

It’s been nearly a quarter century since the Americans with Disabilities Act was passed. Many of you may think folks with disabilities are equal now. That perhaps we should just shut up already and move on.

I understand that reaction. People with disabilities haven’t told their story. We’ve let others – usually clueless, often cruel -- tell it for us.

A common but inaccurate story is told by the business owner who resents the ADA. He thinks he’s done everything for those gimps, even put in a ramp. Why can’t they just be grateful, even if the ramp is dangerously steep? The local news airs a story of the struggling business owner allegedly on the verge of bankruptcy, because those darn gimps insist his ramp isn’t up to snuff. 

But the story fails to explain that the ADA is not a burdensome building code but a civil rights law. It fails to point out that its requirements are usually less expensive to meet than already existing structural, electrical and plumbing codes. The story doesn’t say ramps are involved so people with disabilities can get into the building like everyone else. The story doesn’t clarify that refusing to remove physical barriers is the same as denying basic civil rights by posting a sign saying “Whites Only” or “Men Only” or “Christians Only.”

There are other stories told about people with disabilities rather than stories told by them. Like when the media made Christopher Reeve the de facto spokesperson for every disabled person on the planet.

I have no ill feelings toward Reeve. But Reeve expressed a very different mindset than the majority of folks with disabilities. He lived many years without a disability. After his injury, he was focused on curing disability rather than making a meaningful life with it.

Fueled by the national media, Reeve’s message aligned with the medieval way of thinking: a disabled person is a broken person. And the only way to deal with someone who’s broken is to fix him. There are normal people and there are disabled people. The normal are whole and valuable, and the disabled are broken and worthless.

The media’s focus on Reeve and his obsession with a cure took away the focus on everyday folks living with disabilities. The message was that every red cent should be used to find a cure. Why direct resources to fund affordable, accessible housing so 30-year olds in nursing homes can have full lives in the community with in-home attendant care? The lives of the broken hold no value until they are fixed.

Only a fraction of news stories focus on the modest investments in the built environment and simple reapportionment of government funding that would truly improve the quality of life for millions of disabled folks. The majority of media coverage reinforces vile stereotypes of the pathetic, pitiable and broken.

If news outlets repeated reprehensible stereotypes of African Americans, Jewish Americans and Hispanic Americans, the public would be justifiably outraged. But pigeonholing Disabled Americans as pathetic is still acceptable.

So I implore disabled men and women to tell their stories. To assert their civil rights to employment and transportation and goods and services. To claim the right to a life, just like anyone else.

Tell your story now, or someone else will tell it for you.

AN OPEN LETTER TO CTHULHU

Dear Cthulhu:

Greetings, Great Old One! Hope I didn’t catch you at a bad time, but I sort of felt like this couldn’t wait. You see, I have a concern I’m hoping you can address.

Some of us pathetic creatures to whom you are malignantly indifferent, i.e. human beings, get around in wheeled contraptions. Most of the time, we manage fine, despite the roadblocks – broken sidewalks, lack of curb ramps, out-of-service elevators -- thrown our way. In fact, if the built environment was a bit more inclusive, wheeling around wouldn’t be such a big deal. So you can rest easy; I’m not asking you to place your prodigious claws on me and heal me like some sweaty tent evangelist in a bad toupee.

No, I’m writing to you for a very different reason. After years of research, including countless hours spent in musty-smelling antiquarian book shops, I discovered an ancient jungle temple dedicated exclusively to you. Imagine my jubilation when I discovered a place here on lowly Earth where I might feel a connection to you. Why, the world around me became tinted with a colour out of space!

I put my life on hold, dedicating my every thought, my every ounce of energy to reaching that holy place. I made the month-long journey to the temple on the back of a flatulent donkey, guided by little more than a map in Esperanto and a Garmin watch.

I shall never forget the day I caught sight of that temple’s Cyclopean walls, eerily hidden in an eldritch shadow out of time. Why, I cried out to Yog-Sothoth with joy! I reached inside my Miskatonic University tote bag and took out my inflatable beard (see attached photo.) But then, imagine my despair when I reached the temple’s entrance.

The dang thing has steps!

After all my time, energy and devotion, I was excluded from entering, unable to gaze at the high altar or sacrifice a goat or even check out the clearance table in the adjoining gift shop! Is there nothing that can be done?

Of course I see the paradox inherent in the situation: you have infinite powers yet total indifference to my plight. Still, I hope that you might pull a few strings and get a ramp installed. It’s not asking much, really. In fact, you’ll even earn yourself a tax credit that’s nothing to sneeze at.

Until then, I shall wait in my jungle lean-to, the donkey and swarms of unspeakably huge bugs my only companions.

Yours truly,

A humble daughter of Dagon