Showing posts with label wheelchair accessibility. 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.

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.."

Roughly 80% of the time I am in my wheelchair. Whether it's my manual or power wheelchair I have immense appreciation for flat terrain, ramps, curb cuts, and low door thresholds. But of course this is not the reality of our world. I think it was around the time I was in the third grade that I began to mentally 'unfold' stairs in my head. Around that time it was a "cool" thing for the girls in my class to fold paper fans that we would then decorate and trade. As I folded my paper fans I used to wish that stairs, in the real world, could be just as easily collapsible and flattened.

But as a teenager and young person I began going to my friend's houses and around town on my own. Encountering stairs are inevitable, especially that ONE stair step in front of that ONE store you have to get into. What to do?!

Here are the 3 ways I have conquered stairs:


1. Climb up them. 
The first house I lived in had 1 flight of stairs. It was there, in the safety of my own home (and around the watchful eyes of my parents), that I perfected my technique for the climb-crawl. For each person this technique is going to be different. The one tip that I would stress is that if the stairs have carpet pads -- MAKE SURE those are securely fastened to the step themselves. There were a few times when those carpet pads came loose and I had a few close calls of what COULD have been an incredibly painful fall.

2. Tell THEM to come down. 
Around the time of middle school is when parents stop hovering around when their children have friends over. Whenever I went over to my friend's house my mom or dad would carry me to the front door. My friend's mom would answer the door, "Hey everyone!! Sandy is here!!!" She would holler up the stairs and a mad stampede of feet would come running down. This was never something that I had to explain to my friends, it was just understood that when Sandy is over we should all hang out downstairs.

3. Ask them to accommodate. 
There is a street in Boston that is notorious for its trendy shopping and eateries. Most of the stores are in brownstones, and many of the restaurants are tucked underneath them. My friends and I joke that I would become an instant millionaire if I were to sue the entire street for inaccessibility, but alas I have yet to act on that dream. In those instances I have done my shopping online, figured out what I want, called the store up and asked them to bring the item out to me. It's a little weird, I agree -- but it works! And a few times... I have gotten some pretty awesome discounts because they managers regretted their inaccessibility.

Side note: There is a CVS nearby that has ONE step into it. Every time I pass by it I think in my head: YOU CAN'T CALL YOURSELF A CONVENIENCE STORE IF YOU'RE INCONVENIENT! 

You've got to look for the little uni-sex stick figure in the chair to find the golden entrance. Sometimes it's an even better adventure than playing a video game, other times it's like you're playing on the Nintendo Wii: Don't forget to dodge the construction site, avoid breathing in the cigarette smoke, and go backwards down the curb cut! 

In high school my power wheelchair didn't have a seat elevator. This meant that I had a tendency to climb on top of my wheelchair seat in order to reach a lot of things. Everything from getting books out of my backpack to pushing the higher buttons on the vending machine required creative acrobatic work. My arms are freakishly long and also have a super-power strength that the O.I. doesn't affect as much. (Probably it's because I use them so often and the muscle strength has made them stronger than any other part of my body... I haven't fractured my arms since elementary school!)

Anyway, I was forever climbing and clambering in and out of my wheelchair -- initially terrifying my friends and family but once they realized I had the monkey-acrobatics-routine down pat, they backed off. It was just the way I did things, and usually I jumped into this routine before anyone could ask "Sandy do you need help with the-- oh.. okay.. never mind.. I see that you got it.." 
Aside from being able to assert my independence and ability, I found it fun to be climbing in and out of my wheelchair. Being able to jump up and down every now and then gave my backside and legs some reprieve from the strict ninety-degree-angle sitting position that I was otherwise in for nearly 8+ hours of the day. I also enjoyed the creative problem-solving this act required. For instance being able to lug my 12lb Algebra II textbook out of my backpack required that I use my dominant hand to steady myself, and then my right hand to unzip my backpack, and then balance on my knees.. the point is, these situations presented themselves to me as problems only I would know how to best solve. Sure there were times when I would drop books on the floor, or nearly slip off my wheelchair -- but I always learned from my mistakes, always adapting to the situation and remembering to never leave my wheelchair turned ON when I was up and out of my seat..

But this post is actually not about a time when I fractured because I was doing one of my acrobatics. (Because I never have!)This post is actually about a time I fractured because I DID NOT do one of my monkey-bar-routines.

All of the water fountains at my high school were at least a few feet out of reach. And even when I could stand on my wheelchair seat, I couldn't figure out a way to steady myself while bending over, and pushing down on the lever to get a drink of water at the same time. To avoid that hassle I usually just trooped down to the nurse's office instead. Not only would I be able to miss a few more minutes of class, but she had candy, and she included ice for her water.
"Oh hey H! What are you doing?" A few times during my trips to the nurse's office I would bump into friends along the way.
"Not much just getting meds. What are you here for?"
"I just wanted a drink of water. With ice." 
"What class are you in?"
"Chem. It's boring and I don't understand what's going on and nor do I care." Mrs. B, the nurse, enjoyed having students in her office and she never rushed us out so I always took my time. She poured a cup of ice water into a cup and handed it to me.

In one hand I held the plastic cup, in the other hand I was steering the wheelchair's joystick, and with my head turned back I called out to my friend,
"Bye! I'll see you later in Choru-" 
"BANG" 
"Umm .. Sandy, that was the door frame.." The cup of water had sloshed all over the place, conveniently hitting all the awkward spots on my pants, my leg rest was all bent awry and my leg was throbbing out of place.
The nurse came rushing out of her office and came to look at the damage. Chips of paint had fallen off the door frame but she could immediately tell that my lower foot had been broken.

My friend H and I will laugh about my door frame incident now, but at the time it was totally the most uncool incident to have happened during my high school career. I mean, aside from the awkward water spillage parts...

What was YOUR lamest fracture incident?? Tell me. 

Posts from this week can be found below --

Most of my friends now live in apartments in the city. This is a pretty boring observation given that many of us are now in our mid-20's and we're "at that age" where apartment living is an assumed norm. But I should add that most of my friends also do not use wheelchairs so apartments have a tendency to be less than wheelchair-friendly. Recently I was invited to two Halloween parties, both of which take place in living arrangements that are up at least a few flights of stairs and as one of my friend's put it "it's not the most Sandy-friendly set-up.."