Criptopia

Illustrations by Mark Weber

cripdetAIL3

What would it be like to wake up one morning and have everything in your life be perfectly accessible, affordable and accommodating?

Johnny Wheeler says the night of July 25 wasn’t any different than any other night. “I was in the living room with my wife playing Facebook games on my laptop. I’m having trouble breaking through level 38, and when I failed yet again, I just spent time seeing what people had posted on their pages. I think that’s what did it. It was all just so hard and negative.”

He recalls links to stories about wheelchair-using Hurricane Sandy survivors still stuck in buildings with no working elevators, some little kid with a disability in Canada being five feet from the rest of the children in his class photo since they didn’t know where else to put him, and Ironside being played by a guy whose legs work just fine. Some other stuff was in there, too … nondisabled celebrities caught in accessible parking spaces comes to mind. The latest, greatest lift-equipped vehicle manufacturer closed due to extreme incompetence was another one.

“There’s only so much of that you can read before your brain explodes,” says Wheeler, 51, an accountant from Bloomingdale, Ohio. “So, you know, I just shut it all down and went to bed.”

cripmgThat was the night of the big storm that spread from Iowa to New Jersey. Lots of small tornadoes spun off and some took cars, trees, even houses with them. What happened next had an almost Wizard of Oz feel to it.  Except, unlike Dorothy, Wheeler knew he was dreaming. “But that didn’t make it feel any less real,” he insists.

In his dream, he lived through an entire day where everything was the same: Same job, same wife, same kids, same goofy big-eared dog, and same flighty secretary. Just one difference. “Everything was perfect for me as a wheelchair user,” he says. “Everything. And I didn’t even realize it right away.”

In fact, he didn’t even notice it when he pulled into the local gas station to fill up. “The pumps are up on this island thing, and the keypad is just slightly out of reach, so I need help,” he says. “Usually I either honk or call them, and after a while — sometimes a long while — they come on out and help me gas up.” They’re nice about it, but still it’s a pain.

“This time, though, I looked, and saw the keypad was lower. I thought, ‘oh cool, they got new pumps.’ I did a quick transfer, gassed up, and made it to work 10 minutes early.” At work, he pulled into the sole accessible parking spot, relieved no one had beat him to it. “It’s not like that’s never happened before, but often I have to wait for a nondisabled nincompoop who stole that spot for ‘just three minutes.’ It’s infuriating, but what can you do?”

Then he rolled into the office, stopped in the breakroom, got himself a cup of coffee, and wheeled on to his desk. “Then I stopped and realized, I got myself a cup of coffee. Usually Sally pours it for me since it’s a very heavy machine pushed way back against the wall on the counter. I’d been on her for years to just move it a few inches forward, and here, she finally had.”

In his office he saw they’d replaced his towering filing cabinets with shorter two-drawer ones and even helpfully put them up on nice wooden pedestals so he could get into them easily. And, they got him the new desk he’d been wanting. The old one worked all right, but was a classic desk, and so he kept banging into its legs and front drawer while pulling in and out.

“And that’s when it hit me,” he says. “I knew I must be dreaming.”

So he says he did what anyone else would do — he left work and checked out the rest of his small city.

It Was Remarkable
“Our office is right downtown, so I just strolled outside to see what I could see. And it was so real, but at the same time so unreal, I’m not even sure how to describe it. Because the kicker was, it all looked so natural, so normal,” he says. All the businesses, even Just Jake’s Eatery, had accessible entrances. In his waking life, Just Jake’s has one frustratingly small step, just about 6 inches, and it’s a hassle getting in there for his lunchtime California wrap — he has to flag someone down to help him. “But this day, I just rolled on in. The door wasn’t even too heavy. And there was enough space for me to easily move past the table to the restroom — you know I had to check out the restroom — and damned if there wasn’t an accessible urinal. Unbelievable. I could reach the towels, even.”

Crip5bWhile at the restaurant he watched a bit of a news show and was pleased to see John Hockenberry had been recruited as the newest talking head for CNN. A commercial for Push Girls, which had recently been purchased by NBC, ran, along with a commercial for the new episode of Ironside, staring real-life wheelchair user Darryl “Chill” Mitchell. And, he was especially pleased to see a commercial for Teal Sherer’s My Gimpy Life, which had also been picked up by a major network.

When the news resumed Wheeler noted with some satisfaction that President Tammy Duckworth had just signed into law amendments that added real enforcement mechanisms to the ADA. Now, vice squads are empowered to shut down businesses that don’t comply with the law. Duckworth’s vice president, Darren Jernigan, nodded approvingly as reporters shouted their questions.

After lunch he continued his exploration of the Bloomingdale dreamscape. The car lot down the street had its signs advertising Low! Low! Prices! — and mixed in with the new RAVs were lift-equipped mini-vans and even a few pick-up trucks. The owner waved him over to show him the newest model of a four-door Corolla, complete with factory-installed hand controls and an electric seat that moved forward or backward for a total range of 18 inches. “That meant I could easily transfer in, and easily get my chair into the back seat if I wanted,” says Wheeler. “I tried it out a few times just for the sheer joy of it. It was remarkable. And you know what was even more remarkable? The car lot wasn’t gouging us for these factory-installs — the accessible vehicles were the same prices as the inaccessible ones.”

He had to know how deep this dream of his went, so he rolled into his doctor’s office and pushed past the nurse into the area where the exam rooms were. In the hallway was the scale and … yes! It was indeed accessible. And the exam table? He had to see the exam table. Booyah! It indeed rose and lowered at the push of a button.

“I cried a little when I saw that,” he says.

Going Home
Wheeler headed to the park to collect his thoughts and ran right smack into a prayer circle. “They usually meet there about that time, but I forgot,” says Wheeler. “Usually I avoid them since they try to lay hands on me and ‘pray the demon of paralysis’ away. But this time, the ones who know me just acknowledged me with a nod and the others didn’t even look up. What a relief!”

After spending some time in the park, which included a sip from the accessible water fountain, he decided to go home. He pulled into the driveway and noticed something he didn’t catch that morning. “My house is accessible for me, but like most of us, it’s a little bit jerry-rigged,” he says. “The ramp’s not really to code and there are rooms I can’t get in and out of very easily.”

The Wheelers purchased their home when their children, Tom, age 24, and Betsy, 22, were still young, and since it was almost paid off, they didn’t want to leave after Johnny became a T5 para in a 2006 car accident. A drunk driver veered into the Wheelers’ lane, striking the driver’s side. It was a dark time for the Wheeler family. “But we all got through it together, and I was able to keep my job, which was a blessing.”

Voc Rehab helped make most of the house accessible enough, but the bathroom was still tight, nothing could make the bedrooms larger, and only the front entrance was able to be ramped. It was an ugly ramp, but it did the job.

Crip4bToday, though, Wheeler took in the aesthetically-sloped and sensibly landscaped no-step front entrance. He parked in the garage as usual, and the jerry-rigged ramp into the main house had been replaced with a quiet state-of-the-art lift. He rushed through to the back door — he RUSHED through to the back door! He’d never been able to rush through this house in a wheelchair before — and saw the deck now featured a switch-back ramp to the yard, where his goofy big-eared dog saw him, and slobbered him with kisses. Usually, Wheeler’d have to access the back yard by going out the front door and making his way behind the house.

The family enjoyed a cook-out, and Wheeler had absolutely no trouble at all with the BBQ grill or fitting under the patio table without knocking condiment bottles off of it.

The only bad part of the entire day was when it ended.

“For the first time in my life, I dreaded going to sleep,” says Wheeler. “I didn’t want to wake up to the real world after experiencing how good and easy it could be.”

The Dream Unfolds
Wheeler says he’s never been much of an advocate, but his very realistic dream has changed all of that. “I write letters to the editor now, I call my elected reps, and I volunteer with the local advocacy group. I even serve on the board of the Bloomingdale Center for Independent Living. And I got my whole family involved.”

“When he woke up after his dream, he had tears on his face,” says his wife of 26 years, Marcie. “I never saw him cry, not even after the accident. As he talked about the dream, I vowed I’d stand by him and we’d do whatever it took to make the dream a reality.”

The Wheelers have discovered that sometimes making the dream real is easy. “Johnny comes here for lunch all the time, and we helped him up that one step for years,” says Butch McCall, owner of Just Jake’s Eatery. “I feel like a heel because I never knew he had a problem with that since he never complained. But he came in one time and we talked, and he told me about his dream, and so we just went ahead and did it. It wasn’t like any of it was expensive, and he’s a loyal customer.” Besides, it turns out, others also appreciated the smoothed-over step.

And Sally, the secretary at Wheeler’s office? She finally moved that coffee pot. The doctor’s office, though, is going to be a tougher nut to crack. “But that’s OK,” says Wheeler. “We’re still working on them. It will happen.”


NOT A DREAM! Small Business Improves Access Upon Request
My favorite breakfast place is an hour away from Seattle’s Pioneer Square — if I catch the right ferry — on Whidbey Island. Cafe in the Woods is very hard to find, but that’s part of the appeal. In terms of breakfast, I favor anticipation. My side-kick, Leslie, gets hypoglycemic easily. So timing is crucial. Miss the ferry, and she’s liable to gnaw my forearm. (Clarifying point: Leslie is my human companion. Gus is my canine companion. He never gnaws my forearm.)

Crip_sidebar1bIn addition to serving soulfully delicious coffee, breakfast features local, organic produce and eggs. I’m partial to the huevos rancheros. Leslie swears by the farmer’s scramble and carrot hash. The soothing tones of Cat Stevens and the somewhat soothing tones of Bob Dylan often waft down from the speakers. Birkenstocks are de rigueur. Like Gore-Tex.

They have a large, accessible bathroom, which is wonderful, but, alas, no grab bars. It is a challenge. I sometimes relish a challenge, but rarely in a bathroom. Rather than suffering in silence, I mentioned this oversight to the manager, who assured me she wanted to make the place as accommodating and welcoming as possible. At the time, the cafe was busy, so I emailed her information on options and placement.

My chronic illness has shaped me into an advocate, but I still hesitate to make my needs known. I don’t have my pitch perfected. My voice is deeper than anyone I know, except my father. And I speak rather slowly. Plus there is a definite chance that people just don’t give a hoot if I can’t maneuver around their store or restaurant or hotel or park or bank or airport or museum. It can make for a perfect storm of indecision. I’ve learned to conquer that inner reticence and lean into my own discomfort.

I am thrilled to report that the ensuing exchange was easy, speedy, and positive. Manager Jan was open and curious; I was open and helpful. Our connection will quickly remedy the situation. Now they see themselves as a more inclusive business, one that meets the needs of people with mobility impairments.
— Randy Earle

Follow Randy Earle’s adventures at his blog, wewillfindaway.org. Currently, he is exploring strategies to help Seattle’s Pioneer Square embrace accessibility.


NOT A DREAM! The Most Powerful Wheelchair User in the World

Ecuadorian Vice President Moreno clasps the hand of his president, Rafael Correa, on election night.

Ecuadorian Vice President Moreno clasps the hand of his president, Rafael Correa, on election night.

Lenin Moreno may be the most powerful wheelchair user in the world, and the paraplegic vice president of Ecuador uses his powers for good. During his tenure, 197,435 people with physical disabilities received treatment, 430,289 have received wheelchairs and other necessary equipment and supplies, 17,876 now have hearing aids and about 4,000 have Ecuadoran-manufactured prosthetic limbs. This is considered extremely progressive in Latin America, and Moreno was nominated for the Nobel peace prize in 2012 in recognition of his work for others with disabilities.

“I think we are on the right track,” said Moreno to the Guardian, a United Kingdom publication. “But this was not because of me. It was because of the citizens. I just lit the flame and it spread quickly.” Moreno says so far he’s only reached about 20 percent of his goals for disability rights.

Here’s some trivia: The second most powerful wheelchair user in the world very well may be Wolfgang Schäuble, the federal minister of finance for Germany.


NOT A DREAM! Policing Placards to Improve Parking Odds
Although it may seem like Criptopia is the only place where it’s possible to find an accessible parking spot when you need it, some real-life locales are working on making it harder for nondisabled drivers to steal those spots.

Recerts may help prevent “dead grandmas” from parking in accessible spots.

Recerts may help prevent “dead grandmas” from parking in accessible spots.

On August 1 a new law took effect in New Jersey requiring people with disability placards and license plates to recertify their eligibility. This ought to help prevent nondisabled people from “inheriting” Grandma’s placard when she dies, and also to catch those who may have needed that license plate at one time, but don’t anymore. While some are upset that they now have to get their doctor to sign off on their placard or plate every three years, others are pleased the state took action.

“One of the things that enforcement people have found is that person may no longer be living and then family members continue to use the placard,” said Joseph Young, executive director of Disability Rights New Jersey, to the radio station 1010 WINS. “The whole purpose of this is just to get placards and hang tags out of circulation when they’re no longer needed.” Drivers do not need to recertify until its time for their renewals.

This isn’t a new idea, although it’s new for Jersey. Some other states, such as Illinois and Kansas, also require recertification.


NOT A DREAM! O Portlandia
The most amazing thing happened to some of our staff while we were in Portland, Ore., for an editorial meeting: a TriMet light rail driver saw us gathered on a street corner and automatically put the side entrance’s lift down. And the lift was very simply designed to slide out a bit above curb height and then snugly lower onto the curb, so it wasn’t like taking a ski lift up onto a high bus.

Bob Vogel was so impressed with this low-floor lift that he took photos.

Bob Vogel was so impressed with this low-floor lift that he took photos.

Unfortunately, none of the wheelchair users with us wanted to board, which confused the poor driver. From his seat at the front, he let us know via loudspeaker that we could board the vehicle now.

No, no, we tried to wave him off. But he practically begged us to please, please, won’t we just try out his lift? It is a very fine lift and oh, so easy! Look, it’s already down. Why not just roll on in?

Was this service typical of MAX light rail? Absolutely, says Shelly Lomax, executive director of operations for TriMet, of which Max is part. “There was some resistance to deploying lifts early on, but we’ve made it so simple and so fast that people don’t even give it a second thought here anymore, the operators don’t give it a second thought. It’s just what we do.”

Also, operators may earn a lapel pin along with an ACE award if customers report they are very accommodating, and in the past, members of TriMet’s accessibility committee have been provided “thank you’” cards they may hand out to especially helpful drivers. “So now an operator sees a person with a disability or who is elderly and thinks, ‘this is my chance to shine.’  That changes the interaction a little bit,” says Lomax.
– Josie Byzek


NM Reader Survey Highlights

Your fantasy for a perfect world?

Crip_sidebar5b“Wings.”
 — Cynthia White, C5-6-7, Northport, Alabama

“Wheelchair users would not be forced to spend tens of thousands of dollars for a not-needed wheelchair accessible van that they do not want. The person could go to a dealer, pick out a vehicle, and say, ‘Make it accessible.’ Or better yet, each and every dealership would have a full stock of accessible vehicles. Sales reps would actually want to make the sale and so would go by whatever I say.”
— Leslie Little, Dejerine-Sottas syndrome, Williamsburg, Virginia

“No more people saying they are going to pray for me.”
— Name withheld

“Airlines could do more about making their awful toilet facilities on most aircraft more accessible … put bars around toilets and have doors that shut more easily. It’s the 21st century for crying out loud, and airplane facilities look like they did when restrooms first appeared on aircraft!”
— “Zippie,” polio, Pittsburgh, Pennsylvania

“I don’t like it that media shows only ‘inspirational’ people. I want people to know what happens when there aren’t any accessible parking places left. I want them to know about pressure sore issues, catheters, bowel concerns, pain, medications, the average income, assistance needed — the whole dark side. I don’t want their pity. I want them educated. Only then can they understand the need for ADA compliance, rehab availability and medical research.”
— Karen Miner, C4, Roseville, California

What in your world now is close to perfect?

“I love the parks and use the parks in New York quite a bit. Many parks in a lot of states are very accessible. It is a breath of fresh air to wheel around outside and not worry about falling out of your chair.”
— Joe Monte, T10, New Milford, Pennsylvania

“Since 1995 when I was injured, waiters are much better about asking me what I want, rather than asking my dining companions. It is a new world. Ditto with flight attendants — they seem much more comfortable with people with disabilities.”
— Name Withheld

“I’ve been very favorably impressed with the attitudes of the people who live and work in Las Vegas. My son lives there, and every time I go out for a visit I find most people to be kind and inclusive, and pretty much everything is accessible. If it isn’t accessible someone will make it accessible or find out how to make it accessible right now. Coming from a city where it seems “everything” is not accessible and lots of people don’t care that it is not accessible, being in Las Vegas is a breath of fresh air.”
— “Zippie,” post-polio, Pittsburgh, Pennsylvania

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  1. I would have 1000 sq ft roll in shower, Open floor plan 3000sq ft , then roll in to fully adapted kitchen and get some ambition. overhead track system would lift just enough to get in shower chair. then transfer on to radical transfer master bed, which can be adjusted 10k different ways. Roll out side of house, with a huge, flat concrete slab with my 2 vans parked there. One small mini and a giant 4×4 sportsmobile monster to hit the road. If I was short of time and my own personal runway was there, ROLL aboard my King Air Turbo prop for a hop to SFO or san diego..
    If flying commercially, A seat with ez lock no transfer required. no patronizing looks from other passengers.

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