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Amy F. Quincy Author/Freelance Writer

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From Down Here

Thoughts on Disability

Same as it Ever Was

Watching the Suns (sort of)

Lots of things have changed for me these days. Instead of walking along the water, Frankie and I sit at the handicapped ramp and watch the waves. I avoid Publix at 5:00 on weekdays, festivals and flea markets, and crowds in general, but I used to like going into a packed bar on a Friday night. I wake up rested and alert at the crack of dawn with nowhere to be. When I was employed, I’d hit snooze 15 times after 7:00 and still struggle to stay awake. Most everything is different: my friends, how I get ready and where I go. But not too long ago I experienced something that was almost exactly as I remember it. Baseball.

Call me slow, but when we entered there seemed to be an inordinate number of walkers, wheelchairs and canes.

I am slow. It was the Jacksonville Suns Disability Night. Admission was free to a Duval County resident with a disability. I wondered briefly if you had to prove this. Then I decided there weren’t many people trying to escape the cost of admission by pretending to be part of this crowd.

It was wonderful. Handicapped people (and socially sensitive able-bodies) were everywhere. If someone wasn’t disabled themselves, they were with a friend or family member who was. Or they were a caretaker. (Each disabled person could bring a guest for free.) Here was a crowd I could be part of. Instead of feeling like a side show act at the circus, I could be part of the audience again. It felt… normal.

Friends and I sat in the handicapped seating back by the food, which was also free. Those that could do so without much trouble brought snacks back for the rest of us. Popcorn, peanuts and big, soft pretzels. It was all terrible, but it didn’t matter. I laughed at myself as popcorn missed my mouth and at a friend who spilled her beer. I can’t tell you what the score was (or even who was playing!) but as far as I’m concerned baseball has never been the point of going to baseball games.

So, I’m revising my opinion. Crowds aren’t so bad … if you’re part of the right one.

1

Pushing the Envelope

There’s just no competing with California. Better weather, healthier lifestyle, prettier people. Even the girls in wheelchairs are glamorous in L.A.  Case in point: “The Push Girls,” a new reality show featuring four beautiful, brave women — all disabled.

Hooray! Finally, a reality show I can admit to watching. And a show I can relate to. Not that I have much in common with these women aside from height, or lack of it. No, next to this bunch with their stylish clothes, high heels and blinged-out wheels, I look ready for the nursing home in my stretchy pants and granny wheelchair. But I applaud them. They refuse to be typecast. They’re pushing boundaries and breaking molds. Their new series on the Sundance Channel (Mondays at 10) is dispelling any preconceived notions of what it means to be handicapped.

I’ve watched all episodes to date (not an easy feat since getting rid of cable) and I have to say — I’m a huge fan. I’m intensely curious as to how they do things. (This must go double for the average, in-the-dark, able-bodied viewer.) But producer Gay Rosenthal, who also produced TLC’s “Little People, Big World,” maintains the show is not exploitative or voyeuristic. I think people just like looking into a world that’s different from their own. Like the world of sports agents in Jerry Maguire, groupies in Almost Famous or doctors in “E.R.”

The show follows the women as they juggle relationships, careers, family and friendships. It’s interesting because they’re handicapped (and dealing with the natural obstacles that entails,) but also because they’re young, attractive, fun and seemingly fearless. So far, I’ve watched open-mouthed as they bounce down all kinds of stairs, perfect their chair dancing moves and even go out speed dating. I mean, these are some gutsy girls! One of the four was (and still is) a professional dancer who, on one episode, enters a packed ballroom dance competition to compete against able-bodied dancers! Granted, I can’t have been the only one to consider it might have been a pity-win when she and her partner took first place in the Show Dance category. But you can’t argue, she deserved a trophy just for having the hutzpuh to get out there. People say I inspire them. Well, these girls inspire me.

That doesn’t mean you’ll find me in heels anytime soon (I’m still a Florida flip-flop girl,) but it’s nice to see people in wheelchairs feeling good about themselves and life. I’ve been cautioned against calling high heels in wheelchairs ridiculous by a friend in a chair who used to wear them too. She moved here last year from (where else?) California — so make of that what you will.

Not everyone is sold. A critic for The New York Times worries that the show may give the mistaken impression that these women are representative. That the majority of disabled Americans are not in poor physical health and financial straits, unable to obtain jobs or even interviews, but young and independent like these women. Really? Since “Real Housewives,” do people think all housewives have personal chefs and wear $25,000 sunglasses? It’s Hollywood! Literally! I say capture the public’s attention with the pretty version, then work on social change. Maybe this media milestone will bring about real change for people living with disabilities. I’m hopeful — so goes California, so goes the nation.

3

More Kindness

I hope you’ll forgive the repeat of a previous post, “The Kindness of Strangers.” I didn’t have time to write a new one — I was out surfing. Body surfing to be exact. Life Rolls On hosted their sixth “They Will Surf Again” event this past Saturday in Jacksonville Beach. There were a record number of disabled surfers and all kinds of friends, caregivers and volunteers ready to help wherever needed. I hope you’ll enjoy the new pictures as much as I enjoyed the perfect weather, water and day!

From “The Kindness of Strangers”:

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. My friend, Amy, pushed my chair down by the water to wait my turn at “surfing.”

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.

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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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.

4

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
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Tough Guys

One quadriplegic furiously chases down another as the two men move from their locked positions. Their wheelchairs race and then WHACK!  The clang of metal on metal rings out and one wheelchair crashes on its side, its occupant suspended helplessly. In any other setting, this would bring people running to assist, but here, a referee casually walks over and picks up the ball before someone rights the dangling player.

This is Quad Rugby, a.k.a. Murderball, and it’s all just part of the action. And having been to several games, I can tell you — there’s plenty of action. The rules are pretty simple. Each team tries to get the ball through the goal on their respective side of the court. The offense passes or carries the ball, while the defensive team blocks. There are fouls, rebounds and a lot of back and forth. It’s kind of like basketball, but without the hoops or dribbling. And, in my opinion, it’s more exciting. But don’t take my word for it. Check out this video of the Brooks Bandits (Brooks Adaptive Sports and Recreation Program) playing in the recent 5th Annual Southern Slam Quad Rugby Tournament.

It’s disconcerting at first, watching people in wheelchairs slam into each other. But then you realize, these guys are defying stereotypes and redefining what it means to be handicapped. While a friend and I watched an away game in Atlanta at one of the premier rehab hospitals in the country, a woman next to us had just met the parents of a 16 year-old who’d been severely injured in an accident. “Bring him down here,” she told them in the elevator that led from patient rooms to the indoor arena. “He needs to see what’s possible.”

I read a memoir by disabled cartoonist John Callahan in which he says he never forgot his first sight of wheelchair basketball players darting around and popping wheelies in the halls of his hospital. It gave him hope through the dark days to come. And the message? Life goes on. Goes on well. In fact, in the disabled world, inviting the Quad Rugby guys to your party is like inviting the football players back in high school. They’re the cool kids on the disabled schoolyard.

For those of you not in the know, quadriplegia means without good use of any of the four limbs (not to be confused with paraplegia, the loss of use of two limbs, usually by spinal cord injury.) Quadriplegics come in all shapes and sizes with greatly differing injuries and abilities. For example, I’m a quadriplegic. And I couldn’t catch or throw a ball if my life depended on it. Unless it was a beach ball. And even that’s questionable. Plus, I’m sure my double vision would get in the way if anyone was foolish enough to let me out on a court. There are quads who can walk (usually brain injured,) but many have suffered a spinal cord injury where the break was high enough to affect hand motor function or grip strength. I’ve seen double amputees playing Quad Rugby and one gentleman in Atlanta, wheeling his chair with a duct-taped elbow, making the former massage therapist in me cringe at the repetitive motion injury he was undoubtedly causing. Then I remembered — he has bigger problems to worry about.

Regardless of the difference in our abilities, we’re all disabled. We want, like anyone else, to belong somewhere, be part of something. These guys like being physical again and playing as part of a team. I enjoy the individual sports, like horseback riding or swimming, but with the camaraderie of a group of people to who, in many ways, I can relate. Everyone wants to look in the mirror of society and see themselves reflected there. And what you get from these games, or any adaptive sport, either as a participant or a spectator, is the sense that life is not over. Not by a long shot.

5

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.

5

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” →

3

Humble Pie

I haven’t been through anything. Sure, compared to most of my able-bodied readers, I suppose I’ve been through something. I have great strength and a positive attitude. I’m inspirational and blah, blah, blah. But I’m here to tell you, I haven’t been through anything.

I recently spent a Saturday afternoon at an adaptive horseback riding event put on by Brooks Adaptive Sports and Recreation Program and Haven Horse Ranch. I thought I was going to write a post about therapeutic horseback riding. As usual, all attempts to plan out or corral my writing have failed, and my storytelling takes a shape different than the one I expected.

My companions that day were two women I had met only recently. One woman had been in a car accident that left her paralyzed from the waist down. The other has MS. She walked with crutches for short distances and was in a wheelchair the rest of the time. Those are the short, simple versions of their stories.

In reality, they’d both seen more than their share of tragedy. One woman’s husband had died, the other’s had split. They were both single mothers left to finish raising five children between them. And after all the bumbling doctors, misdiagnoses and health insurance nightmares these two managed to have quick smiles and good natures.

Sure, I’m happy. But I’m not grieving. I don’t have anyone to blame. My disability just — happened. Disappointment and heartache haven’t been poured on besides. Imagine having part of your insurance settlement signed out from under you while you were in a coma and then try living without bitter resentment every day.

My new friends are brave in small ways too. After the horseback riding, some people headed to Cracker Barrel. My brain immediately got caught up in logistics. How will three women in wheelchairs get out of and back into a car? How will we get in the restaurant? Through that crowded little store? To the restroom? While I was busy planning, they were busy doing — asking for help where we needed it. And I realized, I could use a little more “jump in and go” mentality and worry a little less about what people think.

I’m reminded, once again, how important it is to belong to this group. Usually, I’m the only person in a wheelchair. Here, I’m one of many. Eating with able-bodied folks, I’m conscious of what I can’t do, of poor table manners and food on my face. At this table though, everyone’s got their own problems. I’m freer to be me. And if that means spooning my eggs out of a bowl, so be it.

When it comes time for dessert, I’m eyeing the chocolate pecan pie. The three of us consult the menus. “You know,” our driver says, “it’s cheaper to buy the whole pie.” Ah, women after my own heart. When the pie comes, I’m asked how large a slice. I motion for a bigger piece. I’ll take mine with a side of courage, please.

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