Showing posts with label wheelchair 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..." 

My first wheelchair was bright pink, rigid, and required human-power pushing. Call me spoiled or just technology dependent, but I now refer to all manual wheelchairs as "Flinstone rides."

The Quickie Zippie manual chair also came with a tray that screwed onto the side hand rests. I hated the tray. I used it throughout pre-school and early elementary school, but after the first grade it was phased out because I resisted it so much. My physical and occupational therapists tried every way to the glass-like tray to grow on me, even decorating the border with stickers - but I hated it.
First off it was so bulky that the tray wasn't something I could take on and off on my own. This meant that I could not escape my wheelchair without first asking an adult for help. Secondly, I didn't like how the tray separated me from my friends and classmates. When the class was doing an activity at a table that was too low for my wheelchair, or too high, or if it was an outside activity - the tray would be put on. Though at the time it was meant to serve as an accommodation, in reality all it seemed to do was put a physical barrier around my already existing bubble. Lastly, the tray also made it difficult for me to push myself. The sides of the tray attached to the handle bars and the extra bulk on the sides made it challenging for me to maneuver my chair; in short I felt clunky and useless.

Right before I entered middle school my parents, physical therapist, and orthopedic doctor decided I should get a power chair. Middle school would mean longer distances between classes, heavier back packs, and keeping up with my ever growing classmates. My first power wheelchair zoomed over grass, dirt, bumps, hills, and all the other terrain that I hadn't yet experienced on my own. I loved it and so did my friends who often jumped on the back during recess. Needless to say, this first power wheelchair got me hooked on the independence that power wheelchairs brought into my life. Though it may be odd for me to note this, but the biggest difference was that I had to train my right (non-dominant) hand to do things. Since I no longer required both arms to push, I quickly found how much I was able to get done with one hand free. In gym class I was better able to dribble the basketball, in art class I didn't need my friends to hold my drawings for me, at lunch I could throw away my own trash... these were the small things in everyone else's day-to-day routine that I was beginning to see that I could do on my own!

5th Grade

After high school I got my second power wheelchair. The thought here was that I would soon be venturing out into the real world, living on a college campus, and would need a chair that would allow me to be as independent of an adult as possible. This was when I was introduced to chairs that gave me height. Having mastered as much of the "2-d" plane on wheels as I could, I entered into a world where I no longer had to perform a circus act just to see the top of a kitchen counter. With a push of a button my chair would rise nearly half a foot, giving me an added 6inch height. Trust me, for someone who is exactly a yard stick tall - that's quite a difference!
There's more than just being able to reach higher on shelves, or being able to push the buttons on a vending machine. The other aspects of height include eye contact. I think that this was the biggest difference in getting a wheelchair with elevation abilities: no longer would people feel the need to 'look down' at me (even if they weren't figuratively doing so). And on that note, I also would no longer hear as many knees cracking as teachers or other adults knelt down near me.

Current chair getting new tires

My current wheelchair is a Permobil C300 and my last power chair was also from Permobil as well. I've been thrilled with the company as it provides great usability, durability, and the chairs themselves last quite awhile. Though I do have a new Permobil, my older one still works and it's handy to have a back-up just in case anything goes awry.

But when it comes to trays... despite having a "cooler" tray that collapses to the side and I can put on and off on my own - I still would prefer not to deal with the hassle. In lecture halls many desks are attached to chairs and sometimes I am not always good about making sure that there is a wheelchair accessible desk already in the classroom. Instead, what I've done is I turn the chair around so that the desk is facing me and find that it has worked well for my chair's height. This is also handy because since the seat is empty I can use the now empty chair that faces in front of me to put my books, backpack, or binders that I don't need.

As a gadgety nerd I am continually fascinated by the new technology that wheelchairs have these days. I have heard of apps on smart phones that will allow wheelchair users to control their chair, chairs that are able to climb stairs, and even chairs that have back massages and seat warmers! ... Okay, so that last thing is really just a chair that exists in my fantasy world... but still.. a girl can hope!

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!