Wednesday, September 26, 2007

As a Side Note

Just to demonstrate my "smooth" demeanor and highly sophisticated social skills, I thought I'd share a small incident.

I was calling a friend who I have not talked to in awhile. There's no particular reason that we haven't talked, except that we have been busy with work (or more like he has been busy since I don't actually work anymore!).

My usual inclination in a situation like this is to joke about it. "Why haven't you called? Oh, I see, more important people to talk to?" Anybody who knows me can attest. I sometimes feign hurt to give my friends a hard time. But they know I am kidding.

Except this time it was a voicemail. I had my message planned out. Something about how this would be the last time I would call, you better return my call or we won't be speaking for a while. I swear, the idea was not as creepy as it sounds. Being slightly dramatic is my way. It is fun! I swear!

Well, the voice mail came on, and I was waiting for my class to start so it was silent in the echoey hallway.

"Hey, it's Nora," I started. "I'm calling..and.." Mind blank.

"This is the last time I will call you...Ever...Because.." What was I going to say?

"Um..I am sick and tired of my calls not being returned!" [Nervous chuckle]

"Ha. I'm kidding. So call me back.. I mean, I'm sure we'll talk soon, so call me... Oh Gosh. Bye."

Yeah, smooth. I was sweating.

"If you are finished with your recording, press one."

ONE

"If you would like to hear your recording, press two. If you would like to delete your recording and re-record your message, press three."

THREE!!!!!!!!!!!!!!!!!!

"Hey. This is Nora. Call me back."

WHEW!


My Life as a Celebrity

I'm actually a celebrity wherever I go. In fact, it can be rather awkward when I go to a restaurant or bar--for the SECOND time in my life--and the host, waiter, or manager says, "You're back! So glad to see you again! We've saved a special table for you."

Yes. It is very Godfather-esque. And it has nothing to do with my connection to an organized crime family. It is just because people remember me (for obvious reasons--you don't run into a wheelchair girl who's as attractive as me every day!), and if they see me a second time, they love to point it out.

This has led to some awkward situations. I have "regular status" at every bar I have been to at least once. Most people spend decades of ordering whiskey neats at the same time each night from the same barstool before they become personally known to every bartender in a city the size of Washington. I, on the other hand, am treated with as much warmth and familiarity during my second visit, as good ole Joe who has come in every day since his divorce fifteen years ago.

When my parents came up to meet me for a burger and beer, they were concerned when the bartender brought my drink before we ordered.

"Mom! Dad! I've only been here twice in the past year, I swear!"

"Honey, you know, you should go to a movie sometimes. Read a book. Maybe study more. Do you really want to spend every night in the dark corner of a bar?"

Clearly, they didn't believe me.

It is even worse at restaurants where they have to bring me in through a back door (where the elevator often is). The managers will often give me a sly look.

"You're back! Couldn't get enough of those wings, eh?"

"Yeah, yeah. I love wings. You got me," I deadpan.

Even the homeless people on my street know me. Every time they see me with a friend, they approach the friend, "Hey, Man [or Lady]! I know her, she's my friend! Hey, baby! Can you give me twelve cents?"

That's awkward. I'm like, "Yeah, mister. I awkwardly avoided eye contact with you yesterday, the day before, and last week too. We're real good friends."

It's funny, because everybody means well. The restaurateurs/bartenders are proud of themselves for remembering me and want to make me feel at home, and the homeless people feel some sort of connection to me, since...well...probably since they think that we have something in common--we both face some sort of life challenge.

Me, I just feel a little conspicuous. Dang, Britney, Lindsay, Paris. I don't know how you girls do it. Celebrity life is stressful--especially without the handlers/entourage!


Thursday, September 20, 2007

You Say Green--I Say, Not Impressed

I've never lobbied for increased federal benefits for people with disabilities. I've never chained myself to anything. While I've been tempted to "sit-in" front of the useless buses with broken lifts, I've never done so. Yes, Nora Wiles has kept to her mainstream self.

Frankly, the issues that make my blood boil, that really tempt me to dump my pearls for a Che Guevara bandanna, are when people, i.e. society, tries to (1) keep me out of buildings, or (2) keep me from getting where I am trying to go.

As for keeping me out of buildings, well, I have officially declared war on those Anti-Nora establishments that have decided to keep me out by means of a concrete moat of stairs into the building. More on that another day.

Getting where I need to go is another story. Being carless in DC is totally doable, I think, and a person could get pretty much anywhere by using a combination of the Metro, buses, and of course, when public transit just won't cut it, taxis. The beauty of a taxi is that it is available on demand, pretty much anytime, anywhere to take you wherever you need to go for a fee. As long as you have some cash on hand, you can get home after a late night, you can get to that meeting across town that you're late for, or you can splurge on a ride when it starts pouring as you step outside of your apartment.

Generally in DC, taxis aren't wheelchair accessible, which always annoyed me, but just meant that I have usually been on my own getting around town. I accepted that. Perhaps it is just unreasonable to ask that a healthy proportion of taxicabs on the road at any one time are wheelchair accessible. That would be uneconomical and inefficient.

Then I saw this article in the Washington Post. "Board Gives Go-Ahead to Eco-Friendly Taxicabs"!!!!! These 85 new, hybrid, SMALL, taxicabs will allow riders to travel "guilt-free." '"It's exciting; it's progressive,' resident Chris O'Brien said."

I saw this story in the Washington Post, on the evening news, and a number of other places. The newscaster nearly cried in his excitement.

I'm not saying I'm against hybrid cars, or "green" initiatives, but this story just illustrates the irony in the fact that people will move heaven and earth and are willing to actually change our transportation systems in order to achieve that coveted "green" status--in order to ride "guilt free."

On the other hand, I don't see anybody addressing the fact that there are no accessible taxis in the District, and by adding a fleet of 85 NON-ACCESSIBLE cabs in Arlington, we have essentially further diluted the number of accessible cabs in the metro area.

Ok, I'm off my soap box, but I challenge those who pride themselves as being "progressive" in promoting green taxi fleets to consider advocating for a fleet that we can all use.


Wednesday, September 19, 2007

A Workin' Girl

The cold hard truth is that my disability has severely limited my career options. I can't do retail. I can't flip burgers and I can't carry food and beverages. I can't stock shelves, and I can't really file papers. I realized this as a kid when I decided I wanted to earn some money. Try finding a part time, entry level job as a manager, executive, or any profession that provides a secretary, as a teenager.

My parents were terrific, though. From the first moment that I told them I wanted to get a job--at the green young age of 9--they obliged me. First, my dad let me help him process payroll at his farm. But I think even as a kid, I knew that accounting wasn't for me. "Mommy, Daddy, I want to start my own business," I insisted.

"What do you want to do, Darling," my mother gently asked.

"Well, I could take care of animals. I like animals," I suggested.

"Ok, then. Why don't you put an ad in the newspaper?" she offered, assuming that by the time I got around to writing an ad, my whim would have passed.

"PET SITTER AVAILABLE FOR IMMEDIATE HIRE. ON VACATION? WILL COME TO YOUR HOME AND CARE FOR YOUR PETS."

When I got my first phone call, I was ecstatic. "Yes, can I please speak to Nora?"

"This is she," I squeaked.

"Um, yes. We need a pet sitter to feed our two dobermans while we're on vacation. Do you do dobermans?"

"Yes, of course," I quipped expertly.

"Mommy, Mommy," I yelled after I had closed the deal. "I got my first pet sitting job! What are Dobermans?"

In my excitement, I didn't notice her concern. "Great! Well, your dad can drive you over."

What that meant was that for the ten days of my one and only pet sitting stint, my dad drove me to the client's house, and carried me on his shoulders as we quietly approached the snarling dogs. "I'm scared," I whispered during our first visit.

"Don't look them in the eye, and whatever you do, don't act afraid. Dogs can smell fear," my dad replied.

Luckily, neither of us lost any limbs during my job, and I cherished my $20, or however much my earned pittance was.

Since my parents thereafter discouraged pet sitting as my kid job, I was a bit out of luck. I did more work for my dad's farm, and then when I was in high school, I got a summer job in an office answering phones

Unfortunately, I realized that these limits to my hire-ability didn't end after college. (Yes folks, those days when you could get your trusty four-year, and then step in as a young, wet-behind-the-ears executive ended about 50 years ago.) After graduating with my Bachelor's degree in tow from a well respected college, I found that in order to "make it" in business, politics, entertainment, or any other career that I might be interested in, there was a long path of minion-ship.

As is noted above, I am a terrible minion! I interviewed for a "personal assistant" job with a political communications director a few weeks into my first real job search.

"I am an excellent writer, I have excellent communication skills, and, oh, excuse me? Coffee? Oh, well Sir, I am an excellent delegator. Would I have an intern?" I mean, seriously. Who would hire a personal assistant who can't even pick up the coffee and dry cleaning? In the end, I lucked out and placed at a slightly-higher entry level research/writing position and decided that law school was the only option.

It is still a real concern, though. What if this law thing goes south? What if I hadn't gone to college in the first place? At some point, businesses must stop hiring you just because you're a cute kid and need a job. At some point, you must have to bring value to your job. As a pet sitter, a burger-flipper, a receptionist, and 90 percent of all other common jobs I can think of, I would be of terrible value! As a personal assistant/minion/lackey, I would be a waste of space. I wouldn't hire me. Even jobs that demand more mental/social labor than physical labor usually require their executives/managers to start at the bottom, whether it is filing, stocking shelves, bussing tables, or making coffee.

What do people do who have physical disabilities that make them unable to do physical jobs? I really don't know. Surely there are some options, but the reality that was always in the back of my mind is that there are basically two paths for a person like myself: (1) don't work so that I can live off of government programs, or (2) find a way to get someone to hire me to start off at a post-minion level (law school being my best bet--not that law firm associates aren't minions, but at least they are hired for knowledge/legal/writing ability rather than proficiency with Coffee-Mate). That's a lot of pressure!

I guess right now I am somewhere at 1.7, hoping to reach the second path at some point in the next year. It is a scary prospect, though. I guess telemarketing is always an option. So if you get a call from a "Nora," asking for the head of the household, have a little pity on me. It'll probably mean that I didn't pass the bar exam.


Monday, September 17, 2007

From Rage to Redemption--On a Bus

My pet peeve, the one thing that can ruin my usually sunny outlook, is a broken wheelchair lift. Here is my issue. Many of public and private van/bus/shuttle services have incorporated wheelchair lift vans in their fleets. This is great and makes my life much more convenient. Why is it, though, that in my experience, wheelchair lifts work only about 60 percent of the time?

In my life, I've watched numerous buses drive away without me. When I was in Boston, the city buses were notorious for having broken wheelchair lifts. It always played out the same. I'd wait with my friends for twenty or thirty minutes in the FREEZING cold (Boston is COLD!) for a bus because I couldn't take the subway or a cab to our destination (since some subways and most cabs were not accessible). Luckily, my friends were all good sports--or at least at the time they didn't know better--though now that I think about it, it did seem like I had a lot of one-time travelling companions. So we would wait in our little going-out-outfits in sub-zero weather for the bus. Hallelujah, it would come! Then, the driver would look timidly at me, make one or two attempts to work the lift, and shake his head. "Sorry lady, it's not working. I gotta keep my route. There's another bus right behind me, though." Believe me. There was never another bus right behind him.

What could I do? I had to keep my cool. I couldn't let my friends get antsy. "Don't worry guys, we'll just get on the next one. Thanks for being so patient!"

Inevitably, the next bus would come, and it would be the same story. There must be some kind of rage memory that accumulates over time. I was a very polite, understanding 18-year-old. At 20, I would complain loudly to my friends. Now, when I see the ominous shaking of the head; the feeble attempts at working the machine, my blood boils. I think about how I might just park myself in front of that bus. I wonder if I sued, whether that settlement could pay my law school debts. I mean, I have just as much of a right as anyone else to get on those buses. I won't even ask to sit in the front. With all due respect to Rosa Parks, the back would be just fine for me.

And so it happened again. Having decided to take a class at another campus, I now have to take the law school's shuttle across town on Mondays. Each of the school's shuttles looks brand new and is equipped with a shiny, fancy wheelchair lift. When I took the shuttle last week, my ride over was fine. However, on my return trip, the driver gave me that dreaded look. "It doesn't work," he said.

I would have none of it. "WHAT DO YOU MEAN? Well, I don't know what you plan to do, but I need to get home immediately. I need to speak to your supervisor before you move." The memories of all those years of watching buses and cars and trains pull away, leaving me alone on an empty street corner, came rushing forward. This guy would leave me -- OVER MY DEAD BODY!

To my chagrin, he did pull away, and I spent approximately 30 seconds cursing him in every language I knew (ok, two languages). Then, out of nowhere, he pulled back in, in a different bus, but with all of the same passengers. He had made them all switch buses! Man, I felt like a jerk. I apologized for being short with him, went home, forgave the campus transportation services, and pondered whether I had reached a turning point--whether I had misplaced my rage all of these years.

Then, today, I went in for round two. I arrived at the bus stop ten minutes early. The bus driver got out, walked back to the lift, and couldn't open the door. "Great start," I thought. Then he used his keys to try to unlock it--something that I have never seen in my twenty-plus years of observing lift operations. After fifteen minutes of fiddling, he approached me. "Sorry, it doesn't work. I called my supervisor, and he said he'll be here in fifteen minutes to take you over."

Yeah. Right. Fifteen minutes. My guess was it would be more like forty minutes to an hour. So I sat and watched the bus pull away. My eyes teared up. These silly little things that I couldn't control had the power to ruin my day and make me look like a fool. I had needed to get to class early today. It was an important day. And all that driver could say was, "Sorry, it doesn't work"?

"See?" I though to myself. "Your cynicism was well placed. You'll always have to deal with these fools who can't even check if the lifts are working before they put the buses out on their routes. You'll always hold up your peers and make them resent you for wasting their time." To make matters worse, it was also 85 degrees outside and the sun was melting my face as I squinted into the street to watch for my phantom shuttle savior.

Then it happened. Precisely fifteen minutes after the bus left, a small van pulled up. James, the supervisor, introduced himself and apologized for the inconvenience. He quickly tied me into the minivan and peeled out. He would get me to class on time, he promised.

As we swerved in and out of traffic, he chatted with me about his kids, asked me where I was from, and assured me that he would remind all of the drivers to check their lifts every day. We pulled in front of my classroom right on time, and I ran in. To top it off, on my way home, the driver from the previous week--the one who had to switch vans--greeted me at the bus stop and told me that he had prepared the van for me. He had even installed a special seat belt so that I wouldn't get thrown around too much. (These vans are OLD and BOUNCY.)

As it was, everything turned out ok. Ironically, the one time I'd had enough, the one time I was ready to fight, the bus world actually seemed to have redeemed itself. I guess I'll have to save my rage for another day.


Sunday, September 16, 2007

If There's a Loo, I'll Make Do--Usually!

"Everyone has his own Mount Everest to climb."

"Even the strongest warrior has an Achilles Heel."

These adages have rung wise and true over the ages. My Mount Everest, and yes, my Achilles Heel is the bathroom. Not to worry, I am not taking this post "to the toilet," so to speak, but I am referring to the fact that probably only 75 percent of public restrooms are wheelchair accessible. I haven't looked up the number, so please don't criticize my made-up statistics. Of course, new buildings all have accessible restrooms because of the Americans with Disabilities Act, but unless you live, work, go out, and die in the suburbs, or in retirement communities, you're bound to encounter old buildings that haven't adapted their restrooms.

I was reminded of this issue because of an interesting article in the New York Times the other day. The article, by Frank Bruni, a food critic of all things, is titled "When Accessibility Isn’t Hospitality." It discusses how many efforts to make restaurants and other venues in New York accessible are somewhat half-hearted. In other words, instead of just placing a ramp in front of the building, many restaurants require wheelchairs to go into the back door, through the kitchen, and up a freight elevator to get in. My experience in kitchens and freight elevators is a large and entertaining matter that deserves it's own post, which I promise will be forthcoming. Generally, I feel that if I can get in, even if it is through a maze that starts in the boiler room, I am satisfied. The most important thing is that I get in. Restrooms, on the other hand, are a whole other issue.

I spent this past summer in New York, and looking at all of the places I wanted to go (i.e. restaurants, bars, theaters, etc.), I would guess that perhaps 20 percent have accessible bathrooms. But I, Nora Wiles, am resourceful! I would never let something as trivial as a lack of restrooms prevent me from following the the party to all corners of the city.

Unfortunately, one night, I followed the party to the West Village. For those of you not familiar, the West Village is trendy, hip, fun, and very old. I went with some friends to Fiddlesticks. It was fun. We were drinking, laughing, frolicking, and generally having a good time. Then it hit me. All three drinks hit me at once, actually. I had to use the bathroom. IMMEDIATELY. Not to be crude, but anyone who's ever knocked back a beer or vodka tonic or two knows that using the bathroom is not optional when you've been drinking!

I grabbed my friend and told her my dilemma. The restroom at Fiddlesticks was down a flight of stairs--not an option. I am always willing to improvise in a dicey situation. Where there's a loo, I'll make do. Sadly, even my spunky persistence couldn't levitate me down fifteen stairs. "If we go outside, I am sure there is a place nearby that is accessible," I insisted.

Now, an insider's tip: the best option is obviously a restaurant next door that has an accessible bathroom. But if there is no such place, Starbucks actually has decent, single-room accessible bathrooms. And now that there's one on every corner, you'll always be within one block of a doable restroom.

Again, fortune was no friend of mine that night, since it happened to be around 1:00 a.m and all of the Starbucks were closed. Lucky for me, I had spotted a hospital across the street. Let me explain my usual train of thought:

1) Is the restroom where I am at accessible?
2) If not, do any of the restaurants next door have accessible restrooms?
3) If not, look for a Starbucks.
4) If there is no Starbucks, or it is closed, look for a hotel. [If you act like you're staying there, they usually have very nice, clean, and accessible public restrooms.]
5) If there is no other option, find a medical facility. Their mission is a healthy community. What are they going to do? Send a poor girl with a full bladder away?

There was no hotel, so I went to the emergency room and asked to use the restroom. At 1 in the morning in the West Village, the emergency room is a safe haven, a friendly common gathering place, a beacon of light in a dark, lonely city--if you're overdosing on drugs. Otherwise, it is a room full of people who are overdosing on drugs and their friends with drug-induced paranoia. Very pleasant.

When I was using the restroom a woman actually called into my stall (because I couldn't close it all the way since it was too small for my wheelchair) and asked if anybody was in there. A moment after I responded, "Yes! Somebody is in here," she threw the door open and looked in at me. "Oh, sorry," she mumbled. When she stumbled into the stall next to me, I could hear fiddling in her purse. A minute later, she sighed loudly with relief, as she did something which I suspect had little to do with using the bathroom. I'll leave it at that.

"Wow, Nora!" you must be thinking. "This is a gritty story for such a refined, classy girl like you." You're right. The world has hardened me. Taking me to such places as seedy emergency rooms in the middle of the night.

The takeaway: Restaurants, bars, places of fun, enjoyment, and drink...I beg of you! Please make your restrooms accessible!

Oh, believe me, though. This won't stop me. It might be a long, arduous, excruciating, and - er - "urgent" climb up that mountain, but I'm determined to lift every rock to find accessible pit stops anywhere I can so that I, and all of the others in my predicament, can enjoy city nightlife to its fullest.


Saturday, September 15, 2007

What Happened to Me?

It's the million dollar question. If any of you can answer it, I would be grateful as it would save me hours of valuable time and dozens of awkward moments.

As you might be able to guess from my blog, I have never been one to suffer from a loss of words. Someone once told me that if I had to pay her a dollar for all of the extra words I used, I'd have no choice but to become her indentured servant since I'd never be able to pay her off. I like to pride myself on the witty comment, the funny story, and the occasional word of wisdom, and when people ask me questions, I generally take them seriously. There is only one question that dumbfounds me time and time again. It has come up more often recently, and each time, I freeze.

"What happened to you?"

I mean, talk about a heavy, existential-crisis-spurring, inquiry. I think to myself, "Is this a trick question? What does my answer say about me?" And in reality, I know that it is just an honest and somewhat brave attempt to find out more about me and my disability. The funny thing is, any question would be better. "What is your disability?" "What do you have?" "What's wrong with you?" All of these would be preferable to "What happened to you."

I've daydreamed about all of the possible cheeky responses. "What happened to me? What happened to you?" "I was born." "Oh, it's just a combination of tuberculosis and leprosy. [Cough cough]."

It's not such a big deal if a friend, or someone I have gotten to know, asks me. I am open about my disability, the history of it, etc., and I strive to demystify myself as much as possible with my friends. But there is something that offends me about a stranger, who knows nothing about me, asking such a personal question. And what's more, asking me in a way that assumes that something terrible--so terrible that it must be spoken of in a whisper--has happened to me. I realize that there have been days when I've skimped on the blush or taken an unfortunate hair risk, but I don't know that I have ever looked dejected enough to warrant a hushed, "What happened to you?"

You might be surprised with the diversity of the intrepid inquirers. I've had coworkers, estheticians (ouch!), barstool neighbors, crazies, teachers, kids, Members of Congress, and many others throw the question at me. I don't necessarily blame them, but I have yet to come up with a good answer.

For now, all I can offer is a word of advice. If I'm ever babbling on, flaunting my words at you, and you'd really like to silence me with one simple, strong blow, just lean in and ask, "What happened to you?" It'll work every time.


Attack of the Ants

The other day, I had a bit of a scare. I was lying on my bed watching tv, and right there, glistening on my white pillow, was a large, round black ant defiantly staring into my eyes. I froze. Most people would kill the pest and move on with their lives. I, on the other hand, felt a queasy sense of dread. Ants don't walk alone.

My irrational fear and abhorrence of ants began when I was six years old. My parents had just built a sandbox in our back yard for my brother and sister and I, and we were excited. Just what was so glorious about a four-by-four pit of dirt is beyond me now, but at the time, my dad may as well have constructed a three-loop roller coaster. The minute my dad poured in the last shovel-full of sand, my three-year-old brother, who had been sitting eagerly at the window sill, ran up to me. "Sissy! Come on. Let's go play!"

We went outside and my dad picked me up out of my chair and sat me in the dirt next to my brother. For two hours, we built sand castles, threw dirt at each other, and buried our legs. Then, being the creative, smart big sister that I was, I suggested that we dig traps in the sand box. I had seen a Discovery Channel special where some men had captured a lion by digging a huge hole in the ground, covering the top with a light brush to hide the hole, and then luring the lion, causing it to run right into the hole. I told my brother that we should build our own traps so we could trick people into walking into them. He eagerly agreed.

We each proceeded to dig a small hole in the sandbox, and picked two weeds to cover the holes. Of course, being the eldest, I was not happy when I realized that my brother's brush cover-up was better than mine. "Trade me weeds!" I demanded. "I want that one." The three-year-old happily complied. When I took the bigger, better plant from his hand, I immediately looked down in horror. An army of tiny black ants came streaming out of the weed, and crawled up my arms, under my shirt, down my torso, and onto my legs. I am not sure to this day whether I screamed or sat in shocked silence, but I was terrified.

My brother's eyes, as big as golf balls, welled up with tears, and he sprinted inside, screaming "Mommy, Daddy! Help!! Ants are eating Sissy!" Out ran my parents to find me covered in ants. Dad swatted some off of me, and Mom quickly scooped me up, ran inside, and threw me in the bathtub. Thousands of little ants floated to the top of the tub.

You can understand why I am not so fond of the little creatures anymore. But I'm tougher now than I was as a kid. When that little varmint, flaunting his shiny black exoskeleton, looked into my eyes and saw the years of built-up disgust, he knew that it would be best for all of us if he just left quietly. And off he scurried, never to be seen again.


Friday, September 14, 2007

My Wheelchair, My Champion

Following up on my previous post, I wanted to mention something that has been bothering me. The other day, I was watching tv, and a documentary came on called, "The Woman With Half a Body." Now, after doing a bit of research, I found that there are actually a number of documentaries that have been done about this woman, Rose Siggins. Let me preface this by saying that after seeing some other interviews and shows with Mrs. Siggins, I deeply respect her confidence, her attitude about life, and her willingness to (excuse my language) stick it to The Man to do whatever the heck she wants.

Nonetheless, when I watched the TLC/Discovery Channel "documentary," and before I had done my own research, I was deeply troubled by a number of things. First, I was shocked by the title. If I EVER had a documentary made about me, and the producers named it "Girl Whose Legs Don't Work," or "Girl Who Has Deformed Hands and Feet," or pretty much anything along those lines, I'd make more money off of the lawsuit than the film. But putting aside the obvious, I was also perplexed by the fact that Rose does not use a wheelchair. She gets around by either walking with her hands, or pushing herself on a skateboard. In one interview, she talks about how she is afraid that if she gets arthritis in her arms, she'll have to be "fitted for a wheelchair," which apparently is a fate worse than death.

I am usually the first person to reject contraptions and machines in favor of finding my own creative solutions that do not require gadgetry. When I was a child, the physical and occupational therapists were constantly trying to outfit me with neat little inventions to help me be more independent. I remember this machine that was supposed to help me feed myself, since I can't lift my arms up to reach my hand to my mouth. The machine had a place for me to set my arm, and then it would swivel to the plate, where I could scoop the food with my spoon or fork. When I was ready to take a bite, I could swing the bar around and reach my hand to my mouth. Pretty neat, huh? A young girl can finally eat on her own with the help of the Xyzabc patented gadget! I was not impressed. I renounced that machine with all the forces a four-year-old could muster, and my abiding parents agreed to send the gadget on its way if I found a way to eat on my own, which I did. I was quite the insightful little girl, since now I can't even imagine trucking a spoon-lever contraption around with me to every restaurant I frequent.

Still...rejecting a wheelchair? That's just crazy! I mean, at no point did I say, "Mommy, I will not use a wheelchair from now on. I will crawl to school! On the ground!" The thing is, I think that the fact that someone like me doesn't see the chair as a sign of selling out, or giving in, is a good thing. If I could get around on a skateboard, sure, I might be able to get to the upstairs level of my favorite bars a bit easier, but it would be triply difficult to gain any kind of social acceptance. How would I go to job interviews? How would I use the subway? People are fairly accustomed to seeing wheelchairs, and I truly believe that if you happen to need to use a chair, your attitude and confidence can overcome the discomfort of probably 90 percent of the population. And the other 10 percent--well, doesn't at least 10 percent of the population believe that we never landed on the moon? The point is a wheelchair isn't - and doesn't have to be - a political statement, a stigma, or more than even a brief mention. On the other hand, the idea of a person crawling, or even riding, on the ground troubles me.

Is that unfair? Shouldn't I just appreciate the fact that Mrs. Siggins wants to use her natural mobility and doesn't want to be confined by a contraption, just like I didn't want to use the spoon-lever gadget? I don't know.

In my queries, I also ran across a related, interesting, and also disturbing, article in New Mobility. Gretchen Schaper, a paraplegic, did an experiment for her college honors thesis. She abandoned her wheelchair and crawled around campus to her classes all day. In the article, she discusses how people tried not to stare at her, and basically how everyone on campus seemed so freaked out that nobody would talk to her. I guess her mission was to "expose" her disability by unmasking her body from the protection of the chair, and at the same time invoke a deeper appreciation for wheelchairs by proving that they are instruments of freedom rather than contraptions to fear. If the latter was her purpose, I'm sold. But I didn't need anybody to crawl around all day to convince me of that.

I have been trying to figure out just why these two stories disturb me. I am not by nature a judgmental person, and I admire anybody who is willing to accept and champion her body and her existence--disability and all. The problem is there is something about crawling on the ground that seems degrading. Seeing somebody else who has a physical disability, who somehow represents me, on the ground makes me nervous and uncomfortable in a very personal way. I am afraid that it exposes me in a small way--showing the public that if you stripped me of my one and only oh-so-powerful contraption, I too would be relegated to the ground.

Sure, it might seem hypocritical, but I will continue my righteous rejection of gadgets and contraptions, and yet I'll still be an unabashed advocate for wheelchairs.


Wheelchair Glamour: Myth or Worthy Goal?

I went home to visit my parents a few weeks ago and, like clockwork, approximately one hour after my arrival and once the exhilaration of seeing me had worn off, my mom took one look at my wheelchair. I knew I was in trouble. I think she looked less disgusted when my now-senile dog brought a dead rat inside and dropped it in the living room. (Ok, that never happened, but if it did, she would look less disgusted than she did looking at my chair).

"NORA, don't you ever CLEAN this thing? You know, the poor homeless people on the street corners have chairs that look nicer than yours right now! This chair is an extension of your body. Would you go two months without showering or brushing your teeth?"

[And just in case there is any question, NO! I would not go two months without showering or brushing. I am a steadfast showerer/tooth-brusher.]

She then proceeded to clean my wheelchair from top to bottom. I admit, it looked fantastic. I promised to clean it once a week--a promise I have adhered to vigorously (hi, Mom!).

Even though I dread my mom's disapproval over the dirty state of my chair, I absolutely agree with her that having a sharp, clean wheelchair is very important to a person's overall image. I think I always focused on my person, being meticulous about the way I dress, my hair, and my makeup, but I often overlooked my trusty chariot! Cinderella looked hot when she arrived at the ball, but what would the crowds have said if she'd arrived in a muddy, banged-up El Camino with chipped paint?

For me, the wheelchair is very functional. When I bought this one, I looked for something that had a very specific seating system, i.e. could tilt, recline and pre-cline, that was durable and fast, but equally importantly, I looked for something that wouldn't stand out. I like my chair to look minimized so that I am the focus of the attention, not the chair. I very much appreciate the technology that allows me to get around on my own, and that provides me with so much mobility with the advanced seating systems that are available. I do joke about it sometimes. My last chair was a Bounder, that was the name of it, so I cleverly named him "Bounder" even though one of my friends aptly pointed out that he could do everything except bound. I similarly named my current chair "Quickie." She, on the other hand, stays true to her name, hence my begrudged nickname. That being said, I honestly think about my chair in only two circumstances: when something is broken, or when my mom is chastising me for not cleaning it.

Taking Mom to heart, though, I do think that we wheelchair users should be more diligent about how we present our chairs. I ran across an article about wheelchair accessories that are used to "glam-up" a chair on special occasions. You can get arm rest covers in different materials and colors, and various rims and sparkling hub caps. I know, I know. This sounds tackier than ties with light bulbs, but when I saw the pictures, they looked great. It's kind of like wearing different shoes or handbags to match your outfit.

So my new goal is to pay more attention to my chair. It will still remain understated--I don't think I'm ready for velour foot pedals or leopard skin arm rests--but for an object that so literally transforms my life every minute of my waking day, I am willing to be a little more considerate.


Thursday, September 13, 2007

Introducing Nora Wiles: Aspiring Inspirational Celebrity

It's about time I introduce myself to you, aside from my silly childhood (and speeding) stories. My name is Nora Wiles, and I am an aspiring inspirational figure. Seriously, I've got most of what is usually required: a severe physical disability (read: lots of challenges and barriers to overcome), an impressive resume and cadre of accomplishments (read: overcame lots of challenges and barriers), a stellar personality, and don't forget my striking good looks and humble persona! I'm ready for the circuit--book me soon, before I get too famous.

I've known a number of people with truly remarkable stories, who faced many more challenges than me and who should rightly be admired, who did just that. One woman wrote a book about her life after her car accident and the barriers she overcame to go to college and graduate. She got her own Lifetime Movie! The first quadriplegic to graduate from an Ivy League college which shall remain unnamed. She gave the class speech at graduation and enjoyed a standing ovation. I graduated three years later, and guess how many newspapers covered the second (quasi) quad to graduate? That's right. Zero. Unless you count the little mention in the "Announcements" section of my hometown paper (circulation: 300). It's ok. I'm not bitter. The fact is that I spent my entire college career trying to show that I was just like everybody else. Nothing to see here, folks.

The problem for me is that I know growing up I would have greatly benefited from seeing the success of another woman who used a wheelchair. Someone who had already laughed in the face of those logistical and social challenges that I would soon encounter. But I wanted to see somebody whose life achievements did not necessarily center around her disability. I didn't just want to look at her and say, "Wow, she uses a wheelchair, and look at all she has done." Rather, I wanted the kind of role model that I could look at and think, "Wow. I would like to be her. I would want her life." And even better, I wanted to see somebody who other girls, with and without disabilities, would look at and say the same thing.

That has been what I have aspired to. I have always wanted to inspire people and give young girls with disabilities hope and confidence. But I wanted to be somebody who they would like to be. Somebody whose life looked appealing enough for all people--with and without wheelchairs, disabled and not--to envy.

Of course, I do not in any way think I have achieved this. I am happy with my life, and I'm proud of what I have done and what I plan to do, but I am only twenty-six. It would be pretty darn presumptuous to assume that scores of young'ens would die to read law books, play Texas Hold Em, and eat peanut butter sandwiches all the time like me. All I said is that I aspire to be cool enough to be that woman.

The point of all of this is that I want this blog to be a way to inspire people, not by lamenting the challenges I face, but by showing how much I enjoy my life. Sure, there are realities that must be addressed. I have to figure out how to find enough people to help me so that I can live on my own. I have to swallow my pride and independent attitude sometimes to ask strangers for help. But those are just incidentals that add to the crazy, funny, exciting story that is life.

One caveat, though: If someone out there wants to offer me oodles of money and a healthy residual income, or if you can help me meet Matt Lauer, I am a highly qualified inspirational speaker, talk show guest, author, and/or star of a TV movie. Please see above (para 1).


Wednesday, September 12, 2007

Get'im, Girls!

Second graders are bold, enthusiastic, and dangerous. At least I was. I don't know how I managed it, but I actually redefined "chasing boys" when I was in second grade. Perhaps I was just trying to compensate for the fact that I couldn't really play tag or tetherball, but I tell you - did I ever compensate!

Here was the deal: there was a boy named Benji who we all had a crush on. He was kind of small for his age, and had huge dimples and straight hair that hung right above his eyes. In order to show our love and devotion to this boy, I had a vision. I gathered the girls, and at recess, we plotted to chase him down, surround him, and capture him. Benji must have been terrified. I sat on the side of the field and yelled instructions to the team. Joe Gibbs would have been proud. We had a few near-captures, but right when the girls were about to bring him in, he would smile, wink at us, and -- I swear -- do a crazy dance move to slip out of their grip. I was pissed. I yelled at the girls. "Run faster! Make a tighter circle around him! Don't let him sneak away. He's TEASING us! Get'im Girls!"

I don't think we ever caught Benji, and I am sure after twenty years of therapy, his nightmares of being burned alive by a gaggle of girls have subsided. That being said, those were the glory days. I was all over that social scene! Went to every birthday party and sleepover. I even invented a spin the bottle game where the person spinning would have to reveal the thing they liked least about the person she spun.

Things got a bit harder in junior high and high school, but the attitude I had in elementary school--the badass, carefree, completely unselfconscious and uninhibited attitude--worked for me. I like to think I still have a little of that in me, though;)


Tuesday, September 11, 2007

Speedy Gonzales

The first time somebody called me "Speedy Gonzales," I was shocked and offended. I thought the Twenty-First Century, and the educated, empathetic, socially conscious generation that I called my own had successfully eradicated blatant racism like this. But no. Apparently any Joe or Jane walking down the street has social license to call me out as "the fastest mouse in all of Mexico."

It was after my sister saw me racing down the street to meet my family at a restaurant downtown that she leveled with me. "You go ridiculously fast," she said. "It's kinda scary. I actually couldn't even make out your face as you went by." I'll be honest, though. I'm still in denial. And when I see the panicked jolt cross over a poor chap's face when I nimbly swerve around his casted ankle, I blame him for that split second of annoyance he must have with me. I mean, I take that back. I do feel bad if I near miss a guy with a cast, since that might truly throw his balance off. But the point is..I haven't hurt anybody yet! And I have places to go. I am very polite, though, and I always apologize---if I see you that is.

So there you have it. I apparently am the fastest mouse in all of Mexico...and now Washington. Just do me a favor--if you walk slow, stay to the right.

Thanks!