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Amy F. Quincy Author/Freelance Writer

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From Down Here

Thoughts on Disability

In-Transit Transient

Illustration by Suzanne F. Quincy

I used to get embarrassed driving in traffic when my car was filthy or there was bird poop all over the windshield. Now, I’m traveling across A1A in my power wheelchair with giant bags hanging off of it like I collect aluminum cans. Punishment for my vanity.

Frankie and I are heading home after spending the night at my mother’s. I have an overnight bag filled with all the things that staying overnight entails. I also have a black garbage bag that has a big empty box in it. My writing group is having a book drive for the Sulzbacher Library and I want to drop off the box at my chiropractor’s office on the way. There’s also a bag for all the reading material I didn’t get to, a small bag for Frankie’s things (plastic poop bags and emergency-come-here-NOW treats) and some leftover lasagna from my mom’s refrigerator. I feel like a handicapped hobo.

All in the name of independence. I’m grateful that I live in a town where things are just a scooter ride away. (I call it a scooter, but it’s not that cool. It’s a wheelchair.) I prefer doing things myself when I can and I’ve been to any number of shops and restaurants with my wheels. I’ve done shopping, banking, met friends for lunch or coffee. Heck, I’ve even been for a beer in the thing. I’m not sure that’s legal. Is a power wheelchair a motorized vehicle? If you can drive a bicycle under the influence, then it would stand to reason…

Last week, I even took in my dry cleaning. The place has a drop off drive-thru. Imagine me pulling over the hose that announces my arrival, “ding ding!” I’ve been there before so they know me, but if the owner felt any surprise or amusement the first time, he hid it well.

The only time I’m truly stuck is when it’s raining out. The power chair can’t get wet. The heat of summer is best avoided too. Someone suggested I carry an umbrella to shade myself from the sun. But, come on. I don’t want to look ridiculous.

Material

Just as I began to wonder what on earth my next blog post would be about, my wheelchair fell off the back of our Jeep in rush-hour traffic.

My mom and I were heading to Best Buy for a new T.V. My heavy, corner-unit Samsung didn’t owe me anything and to prove it, had started showing me a fun-house-mirror picture in miniature. My mother was thrilled. She’d been after me for some time to get with the 21st century and get a flat-screen, but T.V.’s are like cars in my book — I prefer to run them into the ground.

That my mom was driving “in-town” in the first place was kind of my fault. I’m the one who decreed “beach driving only” (not that she ever listens to me.) I’ve been arranging for other rides a lot lately, but this particular trip seemed too good to pass up. Not only did I need the ride, I needed the pixel expertise.

My mother isn’t known for her patience. She can also be a wee bit forgetful. So, when she came to pick me up without the bungee cords that secure my wheelchair onto the outside lift, we decided it would be fine lashed with what looked like an old leash of Frankie’s. I say “we decided” because, having discussed the option of driving back to her house for the bungee cords, both of us shrugged and said “nah.” What could go wrong?

We had just come through an intersection when I heard the series of thumps. “Mom, is the wheelchair okay?” I asked.

She looked in the rear-view mirror. “It’s gone! It’s gone!”

It wasn’t gone. It was dragging by Frankie’s leash down Atlantic Boulevard. Other drivers were flashing their lights. Miraculously, when she hauled it into the back seat from the shoulder, it had suffered only a few cosmetic scrapes.

Sometimes material presents itself.

Having a fresh idea used to be one of the hardest parts of writing. Now, I’m privy to an endless fountain of inspiration. Becoming handicapped is a hell of a trade off, but I’ll take it. I don’t really have a choice.

In his last broadcast, Andy Rooney said something like, any idiot can think up a weekly column. I cringed. Then again, he writes about the crap in his glove compartment and stuff like why-do-I-save-all-these-ketchup-packages.

I recently wrote my life story in 149 words and I dare say my handicap makes my life story more interesting. Something major has happened to me. Disability has its perks? Well, this is one of them. Sorry, writers. Get your own gig. This one’s mine.

No Parking

I should have known what was coming when my mom passed the space very slowly, as she always does, checking for a permit. (Apparently, someone made her the permit police.) There wasn’t one. Not hanging off the rear view mirror, not on the license plate. She learned to check the plate after barking at some woman who barked right back, “Check the license tag before you go getting all high and mighty with me!”

So, this SUV without a permit is parked in the handicapped spot at our hair salon. Mom leaves me on the sidewalk and walks right in the realty office in front.

Oh Lord. Here we go. Inside, I see her pointing to me. She’s having words with some guy at a desk. Oh brother. They’re coming outside, his keys in hand.

“There was nobody here,” he says, like that makes a difference.

“We’re here now,” Mom says.

“Sorry,” the man huffs. He isn’t. He can’t believe this woman marched right in to his office to make him move. The guy’s a jerk. I’m embarrassed, but a little proud too.

I’m reminded of the Seinfeld episode where an angry mob destroys Mr. Costanza’s car cause George and the gang park in a handicapped spot.

But these aren’t the offenders I’m worried about — the people without permits. Society backs me up on that one. It’s generally frowned upon and most people I know would never take a handicapped spot without permission. What I’m concerned about is the number of people with permits that park there and don’t need them.

We all know that doctors give these things out like prescription drugs. Anyone who ever twisted an ankle and got two years worth of front row parking can attest to that.

Last week, I was out walking Frankie by the handicapped access to the beach. A guy was parked in the handicapped spot waxing his surfboard that was hanging out of his truck. He cheerfully said good morning to me as I passed by in my wheelchair. He didn’t even look guilty. Now, unless he’s some kind of “Soul Surfer,” (and he didn’t appear to be, he had all his limbs) then I object.

The problem is that some people don’t see the problem. It’s not enough in my book to have the permit. You should need it too. Doing errands for the disabled person? Great! Is he or she going in? If not, leave the space for someone who needs it.

Some folks think they’re safe from a ticket if they have the permit. Wrong. According to the Florida Department of Motor Vehicles, anyone who uses a permit that does not belong to them can receive a $1,000 fine or up to six months in jail.

In Seinfeld, Kramer talks George into taking the space. “Oh, come on. Handicapped people don’t drive! Have you ever seen a handicapped person pull into a space and park? Those spaces are always empty!”

Those spaces are usually empty. But we’re out there. Some of us drive and some don’t. But we all ride. And occasionally, may even want to go in.

At the Movies

I love going to the movies. My “woulda-coulda-shoulda” career choice is that of film critic. I think everyone’s allowed at least one woulda-coulda-shoulda when it comes to making a living and mine is movie reviewer.

It’s perfect when you think about it. It combines my love of movies with my passion for writing, not to mention my fondness for giving others my opinion. And I could work despite my disabilities. From home. Like Roger Ebert, who still gives his thumbs up or down after a cancer battle took away his ability to speak, eat or drink. Besides, have you read some of the reviews out there?

The only problem (and it’s a big one) is I know nothing about film. Not the history of it. Not the making of it. Just the little I recall from a film appreciation class I took in college. But I do appreciate it. Every aspect of it. From the red carpet and who’s who celebrity madness to the technique and art of telling a good story on film. Which is why I like to hit the box office around once a week, depending on what’s playing.

Becoming a disabled movie-goer has its pros and cons. First on the pro side is, of course, the parking. You would think obtaining rock star status would have calmed me some, but no. I’m even worse about getting there early. My mother and I often sit in bright, empty theaters while the ushers sweep popcorn off the floor from earlier showings.  Our own personal “First Look.”

Something my mother calls a pro that I list as a con, is the discount. It’s a little known fact that a handicapped person plus one can get in for the price of one. The “assistant” gets in free. I guess the idea is that the disabled person might have wanted to go by themselves and shouldn’t have to pay double just because they visit the restroom and need help. (Me, I avoid all liquid consumption, especially the super-sized $10 sodas.)

Unfortunately, this discount is also a little known fact to virtually every theater employee with the exception of management. I can usually be found cringing as some ticket-seller requests a manager over the sound system, much to the dismay of the people in line behind us. He or she then loudly asks if “the handicapped,” i.e. me, get a discount. It’s like being at the drugstore when some loudmouthed cashier asks for a price check on your foot fungal cream.

It’s a definite con when the handicapped seats are in the very front row. No sane person wants to watch a movie like they’re watching a game of tennis just to follow an on-screen conversation. Imagine the crick in your neck!  I won’t do it.  If I’m with two people, I’ll climb the stairs, one arm wrapped around each person’s shoulders. If there’s only two of us, I’ll “butt up” (I hope that’s self-explanatory.) Another reason to get there early and avoid subjecting fellow patrons to that.

One time I climbed, with the help of my mother and a friend. My mother brought up the wheelchair, since it fit down the aisle and we could get to “prime viewing location” (the exact middle.) In an otherwise empty theater, would you believe a couple carrying snacks galore came and sat in the row directly behind us? My mother actually turned around and said. “I’m sorry, but what exactly is the thought process here?” No response. They sat there while we moved, carrying out the whole production of me transferring back into the wheelchair. I told my mom they were probably scared to move because they thought she was a serial killer.

If all else fails and I’m stuck in the first row, I’ll ask for my money back. Price check on a handicapped refund.

I Miss …

… bubble baths.  In winter, slipping into water so hot it stings your toes.

… cooking dinner.  With a glass of wine in one hand, tasting sauce with the other.

…walking the beach.  My toes sinking into the sand, the waves lapping at my legs.

… dancing.  At a club, with girlfriends, knowing some cute guy is watching.

… drive-thru’s.  Eating a taco at midnight because the mood strikes.

… high heels.  A pair of strappy, too-high-to-be-practical, great-looking shoes.

… singing.  Along with the radio, thinking I don’t sound half bad.

Please don’t feel sorry for me.  I never dwell on this stuff, except for the purposes of writing.  Missing something won’t make it so — so what’s the point?  Pity isn’t the intention of this post, gratitude is.  Be grateful for the little everyday joys in your life.  The simple pleasures.  Maybe you can’t feel your toes in the sand either, but you can do something else on my list.  The point is to find and take your blessings where you can.  As for me?  I’ve already watched a gull dipping in and out of the surf this morning.  And twice yesterday.  Last week, I saw dolphins rolling by.  How many of you can say that?  Remember, it’s the little things.

Jack of All Sports … Master of None

On Victory Lake: Photo by John Lipscomb

“So,” Ann asked me. “Which side of your body is paralyzed?”

“Neither,” I answered. I’d told her I’d had a stroke. It was a natural assumption. “But it’s the right side that …” I hesitated.

“Sucks,” she filled in.

“Well no,” I started to say. Then, “Yeah — sucks.” I smiled. I liked her. Therapists (always able-bodied) were constantly telling you not to call one side the “bad” side. Positive thinking and manifestation and all that crap. Here was a straight shooter.

Also in a wheelchair, Ann O’Brine-Satterfield founded U Can Ski 2 over 20 years ago. She’d won six national and two world championships as a disabled water skier. I’d found out about the free “learn to ski” clinic as I had most of my adaptive adventures, through the Brooks Adaptive Sports and Recreation Program.

No stranger to the program or the world of adaptive sports, the list of activities I’ve tried is long: wheelchair tennis, power soccer, rowing, surfing, snow skiing, hand cycling, bowling, billiards, aquatics, horseback riding and now water skiing. I’m bad at all of them. Or as Ann would say, I suck.

Alice Krauss, the director of the Brooks Program, initially suggested I try wheelchair tennis. I have no idea why. My coordination is so poor, I can’t even put my finger to my nose without poking myself in the eye, let alone connect a racket to a ball. In her defense, we hadn’t met yet. I’m sure I sounded quite capable over the phone. I mean, aside from the slur and all. After we’d met, she wasn’t exactly suggesting I sign up for archery. (Who would’ve thought there is adaptive archery?) I know better. I have no business anywhere near a bow and arrow.

Truthfully, I wasn’t half bad at horseback riding. I had dreams of the Paralympics before I learned the competition is in English Dressage. That means both hands hold the reins. I was riding Western with just my left hand. I’m sure they have adaptive equipment to make it work, (heck, I’ve seen a girl riding with no legs!) but I was already trekking to Georgia just to find a Western adaptive teacher. In the end, the time and expense weren’t worth it to me.

I thought I’d found my sport when I was introduced to power soccer. It doesn’t require contact of your body with the ball at all! Power wheelchairs are outfitted with metal cages and driven up and down an indoor court like bumper cars. Except players are supposed to hit the ball, not each other. I was bad at that too. My double vision got in the way.

Adaptive equipment: Photo by Alice Krauss

Yet here I was again, hanging off the back of a boat as one of the “side skiers” counted down from three for the driver. Since it was my first time, I didn’t really have to do anything.  I didn’t even have to hang on to the rope, though I can progress to that later.  The rope attached directly to the sit ski I was in. It reminded me a lot of snow skiing, where even the slightest turn of your head guides the ski.

I’m not sure why I keep trying all these sports. Maybe, I’m more competitive than I like to admit. Maybe, I’m looking for something physical to be good at again. Or maybe, I like being part of a group that redefines what it means to be an athlete. Either way, time spent dreaming about a new goal, even if it’s just an hour, can’t be time misspent. Team USA Water Ski, here I come.

Have Power Chair … Will Travel

I am SICK TO DEATH of bumming rides.  (Okay, I know it’s a cliche’, but I can’t think of anything original.  Fellow writers, help me out here.)  Since I don’t drive, I’m forever asking favors.  Do you mind and could you please take me to the drugstore/grocery store/doctor’s office?  With my mother recovering from an illness and also unable to drive, it’s really starting to wear on me (yes, another cliche’.)  One thing I’ve learned being disabled, people genuinely want to help.  It makes others feel good.  It makes me feel like an eight year old in tights being chauffeured to gymnastics.

I’ve tried relying on the public transportation available to me.  If you’ve read my memoir excerpt “Riding the Short Bus.” you know I occasionally ride JTA’s door-to-door bus service for the disabled.  It has some shortcomings.  If I schedule a 10:00-10:30 a.m. pick up to go to Publix, the earliest I can schedule a ride home is 12:00-12:30 p.m.  I could be shopping by 10:15 a.m., but not be home until 1:00 p.m. or later.  Better not get ice cream.

If you’re beach bound only, there’s also Dial-A-Ride.  I experimented with that service last week.  First, there was no answer.  This did not bode well for Dial-A-Ride.  Or for me.  Then, though I had called the required 24 hours in advance, they were all booked up.  When I picked a different day, they told me what time I would be going shopping.  I had to be available all day.  Hey, I’m disabled, right?  I have nothing better to do. Continue reading “Have Power Chair … Will Travel”

Riding the Short Bus: An Excerpt

One evening, I was on my way home from the outpatient gym.  I’ve fallen into a bad habit since the hemorrhage.  Or maybe it’s not so much bad habit as it is human nature.  I’ve been comparing.  I see a lot of disabilities now and I decide in my head if someone is better or worse off than me.  It’s terrible I know, but it’s what I do.  Amputee?  Better off.  Prostheses are amazing now.  Mentally challenged but can walk?  Worse off.  I don’t think I’d trade my mind for any physical ability.

A blind woman was already on the bus when I was picked up.  I realized she was blind when I said hello and she responded in my general direction but seemed to make eye contact with my left shoulder.  Her eyes looked layered over with coke bottle glass.

Next we picked up a woman obviously coming from work.  She suffered from dwarfism.  I believe the politically correct statement is that she was a little person.  She couldn’t have been much over three feet high and she dragged a suitcase on wheels.  Her pudgy fingers were wrapped around a handle, that if extended, would have been well over her head.  I watched her begin the laborious climb up the three steps of the bus.  First she heaved the bag up one step and rested her hands on top of it while she positioned her feet on the step below.  The driver offered to help but she declined.  I stole a glance as she buckled her seat belt.  Her legs extended flat across the seat, her feet barely dangled over it.  Occasionally, I run across things I can’t reach or a car blocking my access to a curb.  I hate it when friends or well-meaning people put stuff in the very back of my freezer.  Or on the bar in the kitchen or on top of the fridge.  Or any other of the multitude of places that I can’t get to.  But this is only on occasion.  Her entire world is oversized.

Our motley crew continued on down Beach Boulevard when the driver stopped for a light.  I heard music coming from a Ford Explorer in the next lane.  A blonde had the window rolled down and her elbow out, resting on her knee.  I used to drive like that.  One foot tucked up under me.

The blonde turned to look at the bus and I felt grateful for the tinted windows.  I used to look at the short busses too, the blue handicapped symbol on the back, and wonder about the poor souls on board.  Now I’m on the inside.

The sun was setting so spectacularly that evening that I’m sure it would have warranted comment by the driver or passengers if one of those passengers hadn’t been a blind woman.  So instead, we all sat respectively silent in the warm glow of pinks and reds.  I watched as the woman adeptly handled her cell phone to call a friend, then a Chinese take-out place, something I can never do without misdialing or dropping the phone altogether.  Then I listened as she inquired about the specials and placed her order.  This is also something I cannot do as I’m hard to understand and often misunderstood or hung up on like a prank caller.  I thought about her eating her fried rice, something I avoid because it falls off the fork.  Then I turned in time to see the last of the pink sun sink beneath the horizon.

The Kindness of Strangers

“How many people are here?” Ed asked me.

“I don’t know,” I replied.  “A hundred?”

It was almost three times that.  You would think the smoke that hung thick in the air that day would have discouraged some, but it was a large turnout for the Life Rolls On “They Will Surf Again” event in Jacksonville Beach, June 4th.

I saw the advantage of owning my own beach wheelchair right away, but other beach chairs were on hand at the lifeguard station to ferry people over the soft sand or into the water.  Some folks braved the sand in their regular wheelchairs.  Ed pushed my chair down by the water to wait my turn at “surfing.”  He was a friend of my friend, Amy, and I’d just met him, but he had volunteered his truck to tote my dune buggy of a beach chair to the event.

I’d done this once before (this was Life Rolls On’s fifth year in Jacksonville,) but I was struck again at the large number of volunteers.  There were 12 able-bodied volunteers for every disabled surfer.  When it came my turn, I understood why.  It took six or seven people just to get me out to where the waves were breaking, then shove me off in time to catch one.  And volunteers were lined up all the way to the shore to grab me wherever I happened to fall off.

Friends (clockwise) Ed, Kathy, Me and Amy. Photo by Sharon Daniel

A subsidiary of the Christopher and Dana Reeve Foundation, Life Rolls On originally started the “They Will Surf Again” program for people affected by spinal cord injury.  The number of participating disabilities has grown to include brain injuries, amputees, varied birth defects and others.

After about my third ride to shore and face full of salt water, I remembered overhearing someone talk about surfing on their knees.  Anxious to avoid the stinging spray from my position lying down on the board, I asked if I could try sitting up.  This meant a volunteer would ride tandem.  This video is the first of two rides I made like that.  Now that I know it’s an option, I’m certain there will be many more.  My own hooting and hollering was drowned out by that of the volunteers.

I was touched by the enthusiasm, positive attitude and smiling face of each person who assisted that day.  I’m not sure who got more out of the experience, the surfers or all those willing to lend a helping hand.

If you’ve followed my blog you know I like to say “disability has its perks.”  Here’s another one: being disabled allows me to see the good in people.  I’m in the unique position of seeing people at their best.  I am reminded of the generosity of the human spirit almost every day when someone holds open a door, untangles Frankie’s leash or waits for me to slowly cross the road  in my power chair.  And it’s a good thing too, because with a little help, life does indeed, roll on.

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