Search

Amy F. Quincy Author/Freelance Writer

Tag

disability

The Challenge

130309_0005This past Saturday (yesterday to many of you) was The Brooks Rehabilitation Challenge Mile, one of the many smaller “runs” hosted alongside the Gate River Run. There are several reasons why I like participating in the event (this was my second year — read last year’s post here).

Firstly, I like hanging with this group of people because I’m free to be myself. People laugh with me instead of making a huge deal out of it when I pick up a little speed on an unseen decline. It’s nothing here to have muffin crumbs on my face or be seen peeling a banana with my teeth.130309_0008

130309_0004But more importantly, this event reminds me that it’s about encouragement, not competition. I couldn’t help but notice this as I watched people of all abilities cross the finish line. When one gentleman, who had made it most of the way in his wheelchair rose to walk the last several feet, the crowd cheered his name for what felt like a good five minutes. I think most of us would rather have our ability back, but it’s certainly true that when the challenge is tougher, the victory is sweeter.

Obstacles

I’ve never felt like a minority. I mean obviously, as a woman, I guess I am. But in this day and age, with all the strides women have made, I’ve never suffered due to my gender like my mother or grandmother did. I’ve never been discriminated against. Until now.

Not because I’m a woman. But because I’m handicapped.

I got lucky when I found the apartment I live in now. I didn’t really think about it. Just placed a call and went to look at it, like I always did during an apartment search. Sure, I took a couple of doors off their hinges and installed a bar in the bathroom, but that was it. Oh, and there was carpet in the bedroom. That lasted about two weeks until I asked the landlord to put in tile. She was pretty accommodating. I realize that now.

Several months ago, I was introduced to and seemed to hit it off with a particular property owner. I loved the place, had offered to pay for a ramp and could move in when she needed a tenant. She took my card and I started saving boxes. Then I never heard from her again.

Like it or not, I have become an undesirable tenant. I’m neat, quiet, responsible and will most likely make lots of betterments to a property. My rent is on time and I’ve never lived less than three years in any one spot. But I’m not ideal. Some people just can’t get past the wheelchair.

A friend of mine (also in a wheelchair) complained about her own difficulties. While trying to rent at Ocean’s Edge in Jacksonville Beach she discovered they don’t have a single accessible condo. Not one!

Outside, there are steps to the front door of each unit (even those on the first floor) and inside, there are sunken living rooms. This seems to discriminate by age as well as ability. You can’t tell me people over the age of 70 want to be scaling a four-inch drop every time they want a snack from the fridge! This all makes the handicapped parking a bit of a joke. Each disabled space is neatly ramped — to nowhere. Unless you want to tour the front sidewalk. Since they renovated as recently as 2008, they’re definitely in violation of ADA (Americans with Disabilities Act) guidelines. My friend’s in the process of filing a formal complaint, but that doesn’t change the fact that she’ll be homeless come July.

I thought we’d found a solution for her when my own neighbor was renting his downstairs apartment. I was relieved it was someone I knew and we could, therefore, bypass the issue of dependability. Of course my friend is reliable! The neighbor’s met me numerous times. It’s harder to discriminate against someone you know, right? Harder maybe, but not impossible. My girlfriend and I waited hours for him to come over as promised. Then I called and left a message. No response.

Is it that landlords think they’re going to have to make lots of expensive alterations? Often, it only requires a ramp and most disabled people I know are happy to pay for it. Besides, there are lots of organizations that build them for free. (Click here.)

Is it the liability? Personally, I was a much bigger liability when I was an able-bodied partier in my twenties.

Either way, it feels rotten. And it’s just one more difficulty to add to the list in an already obstacle filled life. We’re not called “challenged” for nothing. You might make a difference to someone. Think about it.

Miles Apart

As we crossed the finish line, people cheered and yelled our names. We were downtown, along with hordes of people, participating in the events of the Gate River Run.  We even got medals. Our time? A thirteen-minute mile.

This time, things were a bit different than when I used to do the run with my friends. For starters, instead of making it to the end on my own two feet, I was pushed in my wheelchair. My goal then was a nine-minute mile, sustained for 9.3 miles. This distance was just a mile (the Brooks Challenge Mile to be exact.) But when I was one of thousands of runners, no one ever cheered my name. I never came close to winning a medal. And I never got quite the same feeling of camaraderie.

When David, a friend I met through Brooks Adaptive Sports and Recreation Program, first asked me to go, my initial thought was —  no thanks. I don’t like calling attention to myself or my disability. The last thing I wanted to do was take part in some kind of Cripples On Parade function. (By the way, I hate that word, but the humorist writer in me thought it fit.)

Then David mentioned he needed someone to push. Faced with his own balance issues, he needed something sturdy (like me in my wheelchair) to hold on to. There are so few times I get to be of service to someone else. I quickly reconsidered. Besides, it might be fun. I underestimated just how much.

There seemed to be every kind of disability imaginable. And every kind of mobility aid — wheelchairs, walkers, canes and prosthetics. Able-bodied folk helped push wheelchairs, steady those on foot or guide the vision-impaired. Everyone cheered for everybody else.

Back when I could run the whole course, it seems me and my friends were caught up in the whole competition aspect of it all. This was more about support. I don’t mean to say it was more fun — well, yeah I do. It was more fun. Maybe I’m just a sucker for the feel-good stuff, but I was struck by how good it did feel.

All of us had faced our own personal struggles. Fought against obstacles to be there. It may just have been a mile, but when a challenge has this much meaning, it might as well be a marathon.

Now: with David and sister, Gwen
Then: Running the River Run

Loitering Allowed

My independence has taken quite a few hits over the years, but one inability irks me more than any other. I can handle being unable to write by hand. I’ve grown accustomed to having my food prepared for me. And I can’t really say I mind being unable to work. If a genie popped out of a bottle to grant me only one wish instead of three, I’d certainly wish I could walk again, right? Wrong. I’d give anything to sit behind the wheel in bumper to bumper traffic.

I sympathize with a whole different generation now. Senior citizens. To finally have a concerned family member tell you your driving days are over — ouch. Driving is independence. Being able to get from point A to point B on your own, without asking anyone’s permission. That’s huge. It’s why my neighbors always see me tooling around town in my wheelchair. It’s why I actually had bald tires. It’s why I’ll spend half an hour to go half a mile for coffee with a friend. Freedom.

One of the worst things about not driving, particularly if you’re relying on public transportation, is the waiting. I’ve spent so many hours outside Publix with my groceries, I should be on the payroll. Official meeter and greeter. Twice I’ve given up. Publix kept my power chair till I could arrange to transport it later, while me and my soggy groceries bummed a ride. The problem, if JTA will allow me to say so (and if they won’t, oh well, here goes) is this ridiculous rule they have about spending a certain amount of time at your destination. (That and broken down vehicles and drivers with schedules so packed there’s no way they could stay on time.) I’m not allowed to take 30 or 45 minutes to do my shopping. I have to take an hour. With half-hour pick up windows, it’s not uncommon for me to be waiting outside Publix for two hours.

Now, I can wait an hour with no problem. An hour and a half gets interesting. I’m used to it. But two hours and I’m like the prisoner in solitary confinement who first tracks the passage of time with a rock and then finally goes ahead and loses it. Most people know me as a polite person who would never yell. Hopefully, those people never catch me after waiting two hours. When this happened recently, I could see the attention I was attracting out of the corner of my eye as I said loudly into the phone, “Another 40 minutes? I can’t do it! I just can’t wait anymore!” Then, after hanging up on the poor woman, I called my mom, practically in tears, to come pick me up. At first, I contemplated driving all the way home in my wheelchair. I decided against it. I’m adventurous, not death-defying.

The woman at JTA called later to tell me she’d found a solution. I could take the Community Shuttle for just 75 cents with no waiting. Since I had largely recovered at that point and all frozen goods were now safely stored in my freezer, I decided to give it a shot. I still had to get my power chair from Publix. Mom would take me there and the shuttle could bring me back.

It’s true there was no waiting. But when I saw that big bus barrel into the parking lot, I knew there was going to be trouble. This was no short bus. This was not your quadriplegic’s mini-bus. This was a full-on, mac daddy, watch-your-clearance, city bus. This was a regular bus with regular passengers, who were none to happy to be veering off route for the likes of me. I listened to them gripe and wonder where they were as we bounced down the streets of my neighborhood. I hadn’t even had the right fare (it was a dollar,) but the driver let me slide.

I read in the pamphlet later, that they will do “premium curb-to-curb service,” but it’s obviously not the norm. Those buses are ill-prepared to handle disabled passengers. The ramp was so steep the driver had to be there to make sure I didn’t fall out of my chair when I came off.

So my hunt for decent transportation continues. Dial A Ride isn’t bad, but they only service the beach and don’t run on weekends. So, if you see me in front of Publix, I’m sure I’ll smile and greet you pleasantly. Unless it’s the weekend and past the two hour mark. Then sorry, no promises.

A New New Year’s: A Holiday Excerpt

I must have been insane to do it.  Maybe my ability to reason had not been fully restored.  I still operated under my old personality.  It was the end of 2007, and the old me loved going out to ring in the new year.

Vivian looked cute.  She wore tight metallic pants with a black silk scoop-neck and the strappy heels with the high cork wedge I’d passed on to her.  I loved those shoes.  Even as painful as they’d been after a night out, I loved them.

We waited in a short line.  The girls wore tops covered by leather jackets that would later be shed to reveal sparkly colors and glitter and too much skin.  I was conscious of my jeans and frumpy black sweater.  I wore flat, black boots that might as well have been corrective shoes surrounded by all those tottering heels.  These women clacked.  I clomped. Continue reading “A New New Year’s: A Holiday Excerpt”

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.

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.

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.

Website Built with WordPress.com.

Up ↑

%d bloggers like this: