This 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.
But 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.
I’ve seen and met angels wearing the disguise of ordinary people living ordinary lives.
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.
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.
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.
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.
Every disabled person should own a dog. I can hear friends laughing now because, in the past, I’ve been such a die hard cat person. Frankie has changed all that.
Don’t get me wrong. I still think dogs are a pain in the butt. They need to be entertained more than cats. They need to be exercised. Let out. They’re more destructive. More vacuum-like when it comes to food. They’re louder. Messier. More demanding. You can’t take a three-day weekend with ease. The list goes on and on.
In other words, having Frankie isn’t something I would’ve ever signed up for. Sometimes, the universe doesn’t give you what you want, it gives you what you need.
I’ve realized how caring for Frankie has expanded my world. I know a lot more people. Particularly in my neighborhood. It makes life more enjoyable. Imagine being out and about and everyone waves or nods. Even if I’m not actually with Frankie. Just yesterday, I was at the grocery store when a man said, “It just seems wrong, seeing you without your little dog.” It’s like the Cheers song, (yes, I know I’m dating myself,) but you do want to be where everybody knows your name. Okay, so most of these neighbors don’t actually know my name. The other day walking him, a man hollered out his window, “Hey, Frankie!” to which I waved and yelled, “Hi!”
I’m outside a lot more. I don’t “isolate” myself (as my mother would say.) Without twice daily dog walks, I might be holed up for days on end with my computer and my cat. Instead, the tires on my power chair are actually bald. I need new tires. I hope I don’t have to brake suddenly.
Frankie also bridges the gap between the disabled and the able-bodied. I’m probably a lot more approachable in my wheelchair with him by my side. I’m just guessing here, but it’s reasonable to assume that I’m the only disabled person many of my neighbors have ever talked to. It’s good for everyone. Able-bodied folks can gain awareness and I gain a little self-esteem. For those five minutes discussing the weather or comparing flea medication, I’m not so different.
And service dogs? The benefits seem endless. In fact, I feel guilty just writing it so shhh, but when Frankie … umm… you know… gets to eat people food and run around leash free, I want to get a service dog. Of course, there’s nothing funny about a perfectly behaved dog is there? Maybe I’ll stick to inspirational and endearing misbehavers.
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.
“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.
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.
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.