Showing posts with label accommodations. Show all posts

I'm sure if I were someone who paid closer attention to her life, and wasn't always plugged into my headphones and rushing from place-to-place - I'd see more examples of these moments. But as this event unfolded right before my eyes without my prompting or anything, I was so floored by it that I knew it would need to become a blog post. 

Months ago my friend told me that he had bought us tickets to a comedy show, (it was Louis C.K. for curious minds who want to know the kind of humor I dig...) and at the time I had excitedly penciled it into my Google Calendar: the show was labeled in blue, my favorite color under the category called "Socializing." (Because yes, I am that kind of organized freak.) My friend told me the time of the show, where it was, and our seats. These all became things I also added to the 'notes' section of the Google Calendar event.
Great, I thought. I just had to show-up with my friend and be prepared to laugh. On my end I prepared by re-watching videos of Louis C.K.'s stand-up routines, getting my laughter ready in anticipation during the days leading up to the show.

It was about a week leading up to the show when my friend contacted me and said that there was some kind of problem. The folks handling the seating of the venue informed him that our seats were not actually accessible, and we would have to be moved.
"What are the other seats we'd have to be moved to?" My friend asked them.
"Well there are these other seats in the back.. or we'd have to remove the inaccessible seats in Row A.." They said to him.
My friends, like me, are opportunistic and there should be no surprise that he went with the seats in Row A. The front row, where seats would, apparently, need to be removed. So be it. There was no doubt in his mind that these accommodations were necessary, no dilly-dallying about whether or not he should ask me first, no question as to whether or not this was the right thing to do. He vouched for me, for us, because that's what friends do.

My friend relayed all of this information to me and I thanked him for "scoring us such sweet seats!" My excitement increased exponentially.
The night of the show we showed up the minute doors opened; this was mostly because I assumed there would be some kind of roundabout 'wheelchair accessible route' to get into the venue (because isn't there always??) The usher took our tickets and showed us to our seats. Well not our seats but the other seats way in the back!
As we were being directed to our seats my friend looked at me, brows furrowed and shook his head silently behind the usher.
"Now I have to say I am incredibly disappointed with the way this turned out..." My friend launched into it. I hadn't yet turned off my wheelchair, had only just parked my self into the allotted space, my jacket half un-zipped.

My friend went into the entire spiel of how our tickets had been moved to the front row, that this was incredibly ridiculous... my head spun: Because I am used to being the one who expresses disappointment in accommodations. I am the one who is usually talking to people about how I was told one thing when given something else. I am the one typically clarifying the 'miscommunications.' I am the one who is used to making all of the arrangements ahead of time. I am the one who doesn't think twice about making sure something is accessible. I am the one frequently explaining to people their understanding of accessibility is bogus. I am the one who is usually making the fuss... and this time I was doing none of that. This time I was just sitting there watching it happen. It was at once a weight off my shoulders but also a weight I shared, silently, with my friend as we sat in the seats and waited for the ushers to fix the situation.
"Thanks.." I began.
"No, this isn't right. They better put us in the front row or I'm going to be pissed. I'm writing a letter to complain to their box office."

I didn't really know what I was thanking my friend for at that moment, but "thanks" didn't really seem adequate. In the end Row A seats were unbolted from the floor by technicians, and we were able to laugh ourselves silly the rest of the evening, from the front row, as it was supposed to be.

Last week I got a new manual wheelchair (TiLite Aero Z) but that's not what this post is about. It's about something that, depending on your perspective, is much more minor or broader than getting a new piece of awesome equipment.
It was roughly three months ago that I was being measured so that my new wheelchair would be "customized to be personalized and accommodate" me the physical therapist said. Throughout the fitting for the new chair she continued to use the words almost interchangeably:
"you'll want side guard accommodations to keep your clothes clean.."
"have you picked a color yet? Here are the personalizations that are available to you."
"the type of seat cushion you want can be customized to your body." 
"they can customize the angle of the seat to accommodate the way you sit." 

By the end of that appointment I was excited by these new ultralight wheels that had been accommodated, personalized, and customized to me! Could I have told you what part was an accommodation, and what specifications of the chair were customized? Nope. Now that I'm sitting in the chair and actively using it, I'm not sure that I still could! But after some too-much-thinking on the differences between each of these words, I thought that I'd write what I now *think* each is supposed to mean.

Accommodation.
As a legal term this is the easiest to recognize and differentiate. It's a contract between two parties in some kind of disagreement. Accommodation is also meant to mean a favor versus the common misconception of an accommodation being simultaneous with 'a right' that someone wields. Laws are in place to enforce accommodations, but on their own an accommodation holds no binding or accountable legal responsibility. Enough with that jargon though, here are real-life examples... when I ask for an accommodation it is usually in the context of getting some assistance in order to complete a task that my peers are also doing. "I'd like preferential seating so that I can read the lips of the speaker, to accommodate my hearing-loss." "Theaters and concerts have accommodated seating for wheelchair-users as designated by the the wheelchair symbol." "Public transportation has accommodated accessibility features even though not every train operator knows how to use them.." 

Customization.
I think many O.I.'ers will understand when I say there is standard accessibility and then there's O.I. accessibility. While I can only speak for myself I can say that most 'standard wheelchair accessibility' features are not necessarily appropriate for my size and abilities. That grab bar in the standard-accessible wheelchair stall is ridiculously too far away from my arms reach. The lowered sinks usually require me to still stand on top of my foot rests or seat to turn them on. I think of something as being customized when the shoe literally or figuratively will fit only my foot. I generally also view a customization as something that can be quantified: "My house is customized to me because they measured how tall I am before installing the shower head." "The blazer I just bought was customized by the tailor." "They customized how much push my joystick requires in order for the chair to move." "My desk height is customized so I can slide my wheelchair underneath it, but still be able to comfortably type at the computer." 

Personalization. 
Of the three terms I think that this one represents freedom in choice and options the most. It's also an idea that most people will be able to relate to the best; simply put when something is personal or personalized it resonates with our feelings and personalities. When I was in pre-school I personalized all of my belongings by opting to own things in bright pink, or stuck Lisa Frank stickers on top of everything. Personalization happens when I request something because I either like or dislike something. Now that I'm older I do not request things in bright pink, in fact I make every effort to avoid the Pepto Bismol color! "I'm thinking about getting LED spoke lights for the wheels, in blue of course - so my wheels can be personalized in my favorite color." "I wish my horn could be personalized to play my favorite Green Day song like a ring tone." "Yesterday's post was about how I'd like to further personalize my wheelchair this winter..." 

If there were no stairs in the world it'd be a flatter place, but not in the same way Columbus had believed. If there were no stairs in the world the toy slinky would be a whole lot less fun. If there were no stairs in the world Mary Poppins would never have swooshed up or down the banister. If there were no stairs in the world, the great pyramids of Egypt would look staggeringly different.

If there were no stairs would elevators accommodate more? If there were no stairs, would Machu Pichu still be one of the seven wonders of the world? If there were no stairs, would fire escapes look like slides? If there were no stairs would an old house creak as much? If there were no stairs would bleacher seats be different? If there were no stairs, would dollhouses have fire poles instead? If there were no stairs would we all cannon ball into the pool? If there were no stairs would the stepping stool exist? If there were no stairs how would Cinderella lose her glass slipper?

If there were no stairs no one would ever say "go wait by the stairs." If there were no stairs you would never hear "I can take the stairs instead." If there were no stairs kids would never be told "don't try sneaking down those stairs!" If there were no stairs firemen would never say "use the stairs in case of a fire." If there were no stairs trainers would never say "sweat it out on the stair master." If there were no stairs fewer would say "sorry, it's inaccessible." If there were no stairs maybe fewer would say "oh I'm so out of breath!"  

If there were no stairs more people would know the thrill of racing down ramps. If there were no stairs more people would think about fewer accommodations. If there were no stairs, people might all enter and exit through the same doors. If there were no stairs universal access might be a little more universal.  

If there were no stairs I'd do a whole lot less problem-solving. If there were no stairs I wouldn't be carried around as much. If there were no stairs I might say "I can't.." less. If there were no stairs I could crash more house parties. If there were no stairs I wouldn't shop on-line as much. If there were no stairs my voice might not carry up the stairwell the same way. If there were no stairs I might not be as alone in a stuck elevator. If there were no stairs,

The world would be a less interesting place, and I'm a sucker for interesting.

School had been miserable, the professor had asked me to repeat myself only about a hundred times. In actuality it was probably only a handful of times, but in a lecture hall of at least 50 students - it seemed like I was stabbing myself in the eye 1,000 times.
"I can't hear you, can you speak louder?" The old instructor leaned over and squinted at me. I took a deep breath in and prepared myself to begin again... and then...once more. My classmates shifted uncomfortably around me, it was awkward for everyone involved. Even, I imagined, painful for the fly on the wall that buzzed around the projector.
But time moves on, class was soon over and I stormed out.
"Sandy, maybe you should ask to be able to speak into his microphone or something, next time." A friend suggested quietly, sensing that I was secretly fuming and my ears ready to burn off my head. Just listening to that thought in my head made my stomach lurch. I am one of those people that gets freaked out when I hear my voice echoing over speakerphone, or Skype. I could not fathom the prospect of having my voice be projected into an auditorium. I shrugged my shoulders, "yeah maybe."

On my way to work I was slapped in the face by a swinging backpack on the subway, took a longer-than-necessary elevator ride in a tin box that reeked of urine, and felt largely unprepared for a telephone conference call. It was one of those days when I knew I had a list of things to do, and would only have enough time allotted to talk about the things I needed to do. Meetings, I have yet to go to a meeting where anything was ever actually done! I grumpily thought to myself.
Work flew by, I added a few more "things to do" on my list, and left the office. Slightly paranoid that I was becoming one of those people who takes work home.

The van picked me up, and the driver let me know that he would have to pick-up another passenger as well - drop her off first, and then me. I shrugged and said it was fine. I stuffed my ears with headphones and promptly zoned out. At long last we dropped the other passenger off at her house and turned to head towards home. The sun had now set, the sky a deep blue and I realized sadly that soon it would look this way a lot earlier on in the day. At that point I just wanted to get home, I wanted to stretch out all the 90 degree angles my body had absorbed since 7 that morning, I wanted to get lost in some marvelous made-up fiction novel, I wanted to be in a place surrounded by the familiar.
We finally pulled into the driveway and I turned my wheelchair on before the tie-downs had been taken off. I wanted out!
The lift unfolded, croaking and groaning as it did. I thought nothing of it and zoomed quickly out onto the lift, the driver put up his hand to stop me from going over. I was a mere 4ft off the ground, 4ft from touching home-ground. It stopped. He flicked the on and off switch a few times, there was a silence and lack of movement that made me wish a sinkhole would open up underneath all of us.

Ten minutes later it was concluded that the lift had indeed stopped working, and I had been transferred into my manual chair.
We talked through several possibilities, and while I pushed to have the fire department come and lift the wheelchair out - he was adamant on not calling emergency services.
"This isn't an emergency..it's just the lift."
"IT IS NOT *JUST* THE LIFT! THIS IS AN EMERGENCY BECAUSE THIS IS MY CHAIR!" 

"M'am there's no need to get frustrated. I can get the lift fixed tomorrow morning, and we can drop your chair back off to you." 
"So I have to rearrange my schedule because you decide when my chair will be free for me to use? No. The purpose of the chair is for me to get around and go where I need to go. This is crap." 
I began to think that everything in the world that could possibly be wrong with me, actually *was* wrong with me. My pip-squeaky voice was not capable of anything worth hearing. People would always blindly bump into me in public transportation. Elevators will always reek of urine because, apparently, public accommodations are meant to be pissed on. Work is an utter disaster. And now I can't even choose when I get to access my own wheelchair. I gave up. I stopped trying and called it a day. I went in my room and read until I fell asleep in my jeans.

The next day my wheelchair was returned to me, later on in the afternoon. The lift had still not been fixed. I watched in horror as two average sized men heaved my 200lb electric wheelchair out of the side door, and proceeded to scratch up the sides, and cracked the shroud. At that point I had already missed half of my day and was anxious to get going. I spoke to neither of the men, got into my wheelchair and left to go about my day.
During my lunch hour I had calmed down enough to hop on the phone and file a complaint:
"Hi, I know that what happened yesterday wasn't really anyone's fault. But the driver did not handle it in a way that I felt respected my wheelchair or property..." 

The point of this story is that we will all have incredibly shit-tastic days. It is easy to think that everything bad that happened that day could have easily been avoided if I just weren't disabled. How easy would that be? How carefree and trouble free would my days be then? But the thing is, I wouldn't trade a shitty day on wheels for a lifetime spent wondering "how much better would it be.."

Users of public transportation know what a pain it is to get on that bus or subway car during rush hour. So when you take-up space for at least two people, can't get to the allotted 'Wheelchair Seating Area' because of the miles of bags and jackets in between, and you're trying to avoid the glares from accidentally nipping his & hers fancy work shoes with your four wheels -- I am going to argue that it's an above average pain.

If there is one thing that I strongly dislike about being in a wheelchair, it's that I can't stand being a logistical hassle. As a personal preference (that has nothing to do with being disabled) I like when things are efficient and user-friendly... so before I start sounding like an ad for the latest Apple product, let's just say that commuting on public transportation and other daily-life accommodations are usually less than hassle-free.
It makes my stomach turn. I am fervently hoping that I will magically evaporate into thin air. And I pretty much just avoid all eye-contact while listening intently for someone to say "could you move out of the way?!"
But I am beginning to do it enough that the city-life attitude has been rubbing on to me. That air of 'get-out-of-my-way-I-have-places-to-be-and-things-to-do-ten-minutes-ago,' and when people strut off the subway platforms and plow through to the exit doors - I have gotten good at zooming in and out of open pockets of space in the crowds. Eyes straight ahead, ear buds in, hand on the joystick and I will dare anyone in their best business suit to even try to cut me off. Save yourself the crushed toes and just don't.

Here's the thing though, there really is no reason anyone should feel embarrassed, guilty, or like it's a hassle because you're holding up the subway car so the conductor can figure out how to deploy the lift. Glare straight back at the impatient passengers who are pleading with their eyes "oh my god, seriously, why am I stuck on the train with the wheelchair person taking forever?!" Because the fact remains that you are not taking forever. The conductor who should know his or her job is taking forever to figure out how to get the lift working.
Also it's public transportation! Just because we are genetic mutants or minorities, or have been given medical labels like "rare disease" - doesn't make our position in the public any less valid. There is no membership card needed to be a part of the public. You exist and you live in that community, you are the public. Our four wheels is just as deserving of that commuter rail ride as the person on two legs. The time it takes for us to roll on to the platform and watch the massive wave of feet shuffle over, should be just as expected as when someone rushes through the closing doors to squeeze onto that bloated train.

One morning I waited on the platform, dressed for work and prepared for a presentation I had to give at one of those meetings with donuts & coffee on the back table. The train pulled into the station, the crowd got on and I wasn't aggressive enough - and realized dishearteningly that it'd be better for me to wait for the next train. (I had a presentation to give, I didn't want to risk a broken nose because the morning commuters had elbowed me in the face).

"Hey are you getting on? There's space." A guy called to me from the still opened doors. There wasn't actually space, but he was gesturing for people to squish into the center of the train.
I eye-balled the area that was steadily getting larger with every step inwards from casual-dress shoes and high heels. The doors would be closed any second and I had to make a decision. Would I get on? Would I wait for the next train?
"C'mon, c'mon, we've made space. We can all get to work on time!" 

I took a deep breath in and thought here we go, let's do this! 

We were sophomores in high school and the class was Honors Biology. I had no idea what I was doing in this class or why I had even signed up for it; I was not ever a science person and nor will I ever be. But I suppose to a fifteen year old the important thing was that all my other friends are taking this class, so I will too!


Like many other field trips I had in the past the school had gotten a separate accessible bus for me, and a few of my friends who I got to choose to ride along. This was a tradition that had begun when I was in kindergarten and I could not imagine it being any different!

As I got older my friends all told me that they much preferred to ride in the "special Sandy bus" because the seats were comfier, there was heat / AC, and best of all we got to control the radio. So this field trip began like all the others - I chose 4 of my friends to ride along with me and we were off to visit some lab at some university to do some experiment. (I told you, I'm not a science person!) Getting to the lab was easy, all we did was follow the yellow school bus that drove in front of us. My friends and I were having fun chatting and goofing off in the back while the driver got us to where we needed to go. We got to blast the radio, sang along to all the songs, and at a few stop lights we swapped silly faces with the kids in the back of the yellow bus that was ahead of us.

It wasn't until after that experiment at that university at that lab was done that the field trip took another route. I mean, literally. Did I mention? I had no aide at the time, so in other words there was no adult with us. After we were done with the experiment and the class was getting ready to leave, I waved at my biology teacher and she nodded at me - gesturing that it was okay for me to get on my van. She also checked off on her list the 4 other students that were going to be riding back on the bus with me. So, the coast was clear. As far as she knew me and my friends would get on my van and head back to the high school.
Getting 40 other students, doing a head count, and then reading off the attendance list onto a big yellow school bus can take at least 10 minutes. By that time my friends and I were already buckled into our seats, I was strapped into the van, and we'd chosen our radio station for the ride back.

We left before the rest of my class did.

None of my friends or I had any idea as to where we were, how to get back to the high school, or which left to take. The driver had some idea but he wasn't totally sure. So when we got onto the high way he asked us which exit it was and we all looked at each other and shrugged.
"So should I take this left?" 
"Umm.. okay? Sure? We don't know."
"What do you mean you don't know!" 
"Yes! Take this left!"


Before we knew it we were suddenly in the terminal of the international airport. Without anyway of backing out again the driver was forced to pay the $6 fee to go through the airport tolls, had cursed us, and was now blindly taking left turns until we got out again. Needless to say that although we left earlier than the rest of the class, we got back way later.
"Sandy, are you guys just getting back from your bio field trip?"
"Yeah." 
"We've been wondering where you guys were!" My guidance counselor said to me. I looked at my friends who were on the bus with me, we were all grinning - empty coffee cups in hand and all.
"Where did you guys go? Why did you get back so late? And why do you have empty containers in your hands?!" 
"Umm the bus driver took a wrong turn and we wound up at the airport. Then we got him to stop at a cafe so we could pick up snacks and coffee..." 
My friends and I laughed; shaking her head in disapproval my guidance counselor had no words to say to us and just walked away.