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Amy F. Quincy Author/Freelance Writer

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From Down Here

Thoughts on Disability

Lighten Up

130601_0020 I like people who don’t take themselves too seriously. Who can laugh at themselves or make me laugh. People who turn lemons into Long Island Ice Teas. With lemon.

Last Saturday was another Life Rolls On event in Jacksonville Beach — They Will Surf Again. (For more info – please see my past posts or the Life Rolls On website.) I went, not because I love body surfing, but because I wanted to feel the sand in between my toes and the salt water on my skin. I went because I missed the ocean. Sure, I see it often (even since the move), but this was my chance to get in it.

My enthusiasm was shared by another adaptive surfer named Dani. I spent some time with Dani (who has spini-bifida and who I know from the Brooks program), when we both decided we wanted to sit in the water. Make no mistake — this simple pleasure becomes a huge production when you’re in a wheelchair. Particularly because I was in my power chair, having left my beach wheelchair at a friend’s house during the move. First, we had to notify someone who could track down an empty beach wheelchair. 130601_0009Then, I’d be ferried down, while Dani manuevered her manual chair through the sand. As we waited awhile to be able to carry out this smallest of desires, Dani said to me, “We could’ve crawled into the ocean by now.”

I pictured us scuttling across the sand like crabs, though surely not as smoothly. I laughed.

“Want to? Let’s go for it,” she said, serious.

I did want to go for it, but envisioned the hoardes of helpful volunteers who would descend on us as soon as we left our wheelchairs.

“Just yell, left, right or straight,” she instructed.

Did I mention that Dani is also blind? As if one disability wasn’t enough, she got hit with a double whammy.

130601_0023I was ready to make a scene, for the sake of a good story, but just then my beach chariot arrived. Once down by the water, we had a friend snap a picture. Looking at it later, I took in my long, Kermit the Frog legs jutting out next to her little ones. I’m not sure we should hang out together — our height difference is exaggerated, making me look like an amazon woman and her like Tiny Tim.

But, it’s fun to hang out with someone fun. I’ve met disabled people who tend to play the victim. Who are defined by what happened to them or the body they were born into. The kind of people who, ten years later, still tell anyone who’ll listen exactly how many weeks/months they were in a coma. Our loved ones often talk about the time we were in the hospital. We don’t. At least not the “we” I want to be around.

We all have our sad stories. Able-bodied and disabled alike. Some are just sadder than others. So lighten up! Don’t let tragedy or circumstance define you. If Dani and I can do it, so can you.

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.

Canine Cousins (Twice Removed)

130301_0008Frankie is officially a service dog.

I realize that’s laughable to those of you who really know him, but nevertheless, he is a service dog. And before you ask — no, he doesn’t do anything for me. He doesn’t pick up dropped items (unless it’s food and that’s to eat it). He can’t open any doors. And on public transportation, he’s more likely to climb over me trying to stick his head out the window than sit quietly beside me. If I fell out of the wheelchair, he’d probably look at me like “Now what?” instead of getting help. The idea of having a service dog that doesn’t actually provide a service used to bother me. Until now.

Several weeks ago, some friends and I attended the ceremony of what is, in essence, a service dog school. We watched the “puppies” (usually a year and a half old) matriculate into the training program and fully trained dogs graduate out. These dogs were the real deal. Imagine having close to 50 dogs in one building with no barking. Granted, they all looked alike (black or golden, labs or retrievers). And you wouldn’t want to try to pick these pups out of a police line up. But then, you wouldn’t have to. These were well-behaved dogs.

At the Ceremony
At the Ceremony

At first, I watched sheepishly, imagining my own “service dog” going ballistic in the place, barking at other dogs and jumping up on people. These dogs seemed to have nothing in common with Frankie. They were all distant (very distant) relatives. But as I watched a video presentation, I realized most of the receipients of these “real service dogs” didn’t have tasks on the top of their lists either. Most of these (mainly) special needs children just wanted a friend. And the parents of these children wanted to help them socialize with other children. To help them not feel so alone.

Dogs can do that.

I was fortunate enough to have an able-bodied childhood. To not meet with disability until I was well into my thirties. But even so, I can relate. I can relate to being the odd man out, to stares, or even worse, avoidance. And that’s just in the adult world! Children can be so much worse. Even I was scared of them, gunning my power chair past their school bus stop near my house. Until, I went by with Frankie.

Dogs are the great equalizers. The kids were so busy petting Frankie and asking questions, they didn’t seem to notice I was in a wheelchair. And I’m sure I wouldn’t have been approached by half the neighbors I know, without him by my side. Plus, I know I wouldn’t be getting out as much.

So, I recognize there’s a huge value in companionship. Of service dogs that don’t complete tasks. And of little guys like Frankie. But, don’t get me wrong. I’m not advocating that every woman with a toy poodle in her purse run out and get a doctor’s note to take Fido (or Fifi) everywhere. Though Frankie can accompany me most places, I’m only planning on taking him to the pier. He’ll be the one in the blue vest, barking at the birds.

Moxie Personified

amy & dianaAnd you guys think I’m gutsy. Meet Diana Lain. More positive, more adventurous, more disabled than me. And more full of life than most anyone I know, able-bodied or otherwise.

It’s not often I meet someone with this much gumption. She’s game for anything and loves speed. Some of you may recognize her from other adaptive sport photos. She waterskis, body surfs and plays power soccer (driving the ball into the goal with a power wheelchair.) Not to mention, occasionally joins in on bowling and billiards nights. All this is made more remarkable because she doesn’t have much use of her limbs.

Diana was diagnosed with multiple sclerosis in 1992 and has lived with friend, caregiver and trusty sidekick, Kathy Bailey, for close to 10 years (read the recent article that appeared in The Florida Times-Union.) I don’t remember actually meeting them. It seems, instead, they’ve always been there, giving me countless rides in their wheelchair van since my own disability, and becoming my good friends along the way.

So, I didn’t hesitate when they invited me to check out Little Talbot Island on New Year’s Day. The park has plenty of boardwalks, bike trails and accessible restrooms, so it didn’t feel I was living too close to the edge. I forgot who my companions were.

Our first escapade came when Diana spotted a seagull with a broken wing in a parking lot. I think I have a bleeding heart when it comes to creatures of nature. Next to Diana, I’m the hunter poised to take out Bambi’s mom. Continue reading “Moxie Personified”

A Holiday Rerun

1255290707dzuL99Please enjoy this excerpt, “A New New Year’s,” from my upcoming memoir.

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.

Viv began making our way, pushing the wheelchair toward a large empty table up front that had a homemade sign with the words, “RESERVED — BAND” on it.  Rob came over from practicing to thank us for coming out.  He didn’t know we were grateful to have an automatic place to go.  I used to love that when we were dating.  Viv’s husband was in a band too, so we always had a choice of venues.

People parted as we cut across the dance floor on our way to the table.  I received lots of attention, “Happy New Year!” wishes and condescending “you go girl!” pats.  Apparently, my very existence among the scene was to be commended. Continue reading “A Holiday Rerun”

I’m a Push Girl!

With fellow Push Girl,
Ashley Cooper-Heath,
Ms. Wheelchair Florida

Well, minus the traffic-stopping good looks, the regular voice, the clothes, the dates and the cool wheelchair. I realize that’s an awful lot of missing qualities, but I really think it has more to do with attitude. It’s a spirit and passion for life. It’s about not letting disability keep you from living a full, active life.

I caught three of the four Push Girls on a talk show last week, The Jeff Probst Show. I’m proud to say I had no idea who he was until I flipped by Survivor (not watched, I swear) and recognized his crater-sized dimples. I’m such a fan of the show (Push Girls, not Survivor,) I decided to re-run my “Pushing the Envelope” post, because I think everyone should meet these girls.

It’s hard for me to judge how successful the show is or why. I love it. And I really don’t think it’s because I’m in a wheelchair. Lots of able-bodied friends I know have watched it and become hooked.

I did find out something on the talk show I didn’t know. One of the girls, former model Angela, recently returned to modeling on the show. She had quit young — 21 or so — because she didn’t like promoting the message of ideal beauty. She’s modeling again, paving the way for others with disabilities, because now she has a different message to put out there. How cool is that?

Jeff asked them what their life-changing event had taught them. Their answers seem to sum up what I’m always trying to convey. That life is short. It can change in an instant. Their second chances reminded them that life is precious.

Original Post:

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. Continue reading “I’m a Push Girl!”

Calling All Angels

Volunteer Angels

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I’ve seen and met angels wearing the disguise of ordinary people living ordinary lives.

~Tracy Chapman

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It’s waterskiing time again! Please enjoy the great video put together for Brooks by John Lipscomb, check out Channel 4’s news coverage or read my blog from last year. (I should probably mention that the girl in the tiara is Ashley Heath, Ms. Wheelchair Florida — just because tiaras and waterskiing don’t normally go together.)

What struck me this year was the enormous number of volunteers it took to make this happen. A great many people took their weekend and did something for others instead of something for themselves. So, I’ve been thinking a lot about those that need help and those that give it. I guess it takes both to make the world go round.

But, here’s a secret. I’m kind of selfish. I honestly can’t say if, before the wheelchair, I would have spent the weekend hauling gear and pushing wheelchairs or curled up on the couch with a good book.

So, if you’re one of the helpers of this world (and you know who you are,) then I commend you and thank you. If you’re not, maybe it’s not too late. Or if you’re like me and you’ve realized it’s too late to be of much help now, then what a marvelous lesson we’ve learned for next time.

We make a living by what we get, but we make a life by what we give.

~Winston Churchill

Changing Times

“Look up at the stars, not down at your feet. Be curious.” ~Stephen Hawking

If you’re like me, your favorite part of the Olympics is the human interest stories. Someone who seems destined for greatness, looses and then, struggling against all odds, fights their way back to the top again. If you are moved and inspired by these stories, then you’re going to love the Paralympics. Every single athlete is a human interest piece. Everyone’s got a story to tell.

In case you don’t catch it (and why would you? It’s not televised in the U.S.,) you can watch the Games online. I’ve been watching Paralympic Sport TV. The only problem with this is that I remain hunched over my computer instead of in the comfort of my own living room. If you, too, would rather be watching it on the big screen instead of a small one, my little petition is still struggling out there in cyberspace, so sign it!

The Paralympic Games, which started August 29th and continue until September 9th, started with an opening ceremony extravaganza, held in front of a record audience of 62,000. It began with inspiring words from Professor Stephen Hawking and featured deaf and disabled performances.

This was a homecoming of sorts for the Paralympics because, although the first official Paralympic Games was held in Rome in 1960, the idea was founded in Stoke, just north of London in 1948. Sir Ludwig Guttman began the revolutionary practice of using sports in the rehabilitation of spinal cord injury patients with just 16 athletes on a small piece of land between the back of a hospital and a railway embankment. It has grown steadily to 2012, with over 4200 athletes competing from over 160 countries. Sir Philip Craven, President of the International Paralympic Committee, thanked Sir Ludwig Guttman for “generating the first sparks that became the Paralympic spirit.”

As I scanned the U.S. athletes for sight of my friend Jerry, a Paralympian I met back when we both tried wheelchair tennis (he found his sport in archery – see the previous links,) I found it impossible to keep a dry eye watching the athletes take part in the night of their lives. The Paralympic athletes are a celebration of the human spirit, a testament to the amazing things a body, particularly a disabled body, can do. Isn’t that what we love about sports? And the growing Paralympic movement, with more people watching than ever before, is a sign that we are one step closer to an inclusive society. These are, indeed, changing times.

Me with Paralympian Jerry Shields

Oh Pioneers!

Rosa Parks, Susan B. Anthony and now Oscar Pistorius. Willing to take the not-so-comfortable road. Willing to be an activist, each in their own way. Willing to be The First, a vehicle for social change. I champion them. I applaud them. Unfortunately, I’m not one of them.

I watched with great interest as Pistorius, a 25 year-old double amputee from South Africa, competed in the 100-meter individual race and then the 4×400-meter relay race of the 2012 Olympic Games. He made history, becoming the first disabled person to compete against able-bodied athletes in the Olympic Games.

I saw the Games with my friend Anna, who’s also disabled, and it sparked a discussion. Anna keeps up. She’s much more in the know than I about what’s being talked about within the disabled community. And apparently, many folks would like to see the Olympic and Paralympic Games integrated into one event. My gut reaction? No way. Bad idea. I’m not usually so close-minded and it took me awhile to figure out why, but this is it. I’m a chicken. In the fight for civil rights, I probably would’ve just sat at the back of the bus and blogged about the social injustice of it all later. (If I was black and there was such a thing as blogging.)  Sure, the end result is great. I’m all for Utopia and a “why-can’t-we-all-just-get-along” approach to the Games and life, but it’s the getting there I’m not real comfortable with. Combine the able-bodied and disabled worlds and all I can see coming is a lot of stares and a lot of stairs.

But Anna is a bit of an activist. I was with her when she admonished some kid for taking the handicapped stall at a restaurant.(“How else will he learn?”) My mom’s an activist too. She once pushed me into a pizza joint restroom even though I didn’t have to go just to make a point to the staff that a wheelchair couldn’t get through their maze of tables. She waited triumphant while every server in the place started moving furniture. I blushed and mumbled my apologies.

But exactly what was I apologizing for? Being disabled? I think that’s the argument. As disabled people, we want the same freedoms as everyone else. Not to be treated special, just equally.

It doesn’t come naturally to me, this activism, but I’m working on it. The other day, I politely informed a gentleman who answered the phone at an apartment complex that carpeted floors didn’t make a place “wheelchair accessible.” (“Just so you know.”) Months ago, I wouldn’t have said anything.

So yeah, one Games would be nice. So would an inclusive world where it’s not “us versus them,” disabled versus able. A world where I’m allowed the same freedoms in my wheelchair as everybody else. Where I can go to the same restaurants and rent the same apartments. A world that doesn’t prefer their disabled citizens to remain an invisible part of society. (NBC talked a good game and advertised the Paralympics during the Olympics, but you won’t be able to actually watch them. Check out my petition here.)

To get us from here to there, I’ll rely on the pioneers, the activists. People like Anna and my mom. People like Oscar Pistorius. As for me? I’ll be hiding behind my computer. Is there such a thing as keyboard activist?

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