Showing posts with label adaptive technology. Show all posts

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.."

For the parents/teachers who are reading this you might be silently groaning in your head and thinking "Sandy! What. Are. You. Doing. Now?!" And for the young people reading this -- don't get too excited because this is not a green light to go on a wild lawless escapade!

Every human being is limited by what his or her body will allow us to do. We have yet to spread our wings and fly, we cannot breathe through gills, and have no internal water-storage system to last us months in a desert. But despite the limitations bound within our flesh and organs, we have clearly found ways to adapt through years of technology and science. This adaption is what I mean when I encourage "rule breaking." It might not be a written rule set in stone that states: "No human being may traverse the galaxies" but for quite sometime this was the assumed boundary we set on ourselves. Then there were many uber geniuses who crunched numbers and built gadgets, and that boundary was soon smashed to smithereens!

So what about for people with more physical limitations than the 'average' human being? Within the population of those with O.I. we have clearly seen the benefits of science and technology, and how for many young children the 'old rules' of O.I. have long since broken. There are kids who will be taller than 3ft, kids who were once never expected to walk are now running, there are children playing baseball and hundreds of other sports! As I had written in a previous entry, the benefits of discovery have been tremendous and as an 'older generation' O.I. I am of course jealous.
(Just because we have a disability doesn't mean we should accept a life of complacency, abiding my social assumptions, or even the expectations we have of our own bodies. If you ask me those are all the ingredients to a very, very, very dull life).
But it's important for us to keep in mind that what led to that first discovery was someone who dared to break the rules. Someone somewhere thought: it should be possible for someone with O.I. to have near-average height. It should be possible for a child with O.I. to run without use of a walker or crutches. It should be possible for someone with O.I. to participate in sports, and to have more durable bones. Someone came up with the idea to break those initial assumptions. Someone asked themselves and their colleagues "Well what if we did this..."

One afternoon in the seventh grade I asked myself that very question while sitting after school in detention. Who knows what I had done this time around, but there I was sitting silently in the classroom... pretending to reflect "very seriously about your behavior." As you might believe sitting silently - and very still - should be something that comes easily for someone with brittle bones, but as life would have it that's one of the most difficult things for me to do! OF COURSE I had no intention of sitting in that classroom for 30 min, never mind "very still and silently." I wanted out and I began thinking of ways for me to get out of detention.
From the corner of my eye I saw my friend A begin to slowly slide down in his seat to the point where he was basically sitting on the floor. The teacher was busy working with another student, some nerdy and diligent 7th grader who came after school for more help understanding molecules. Suffice to say the teacher was not paying attention to the delinquents he was supposed to watching in detention. Within a minute A had crawled to the side of my wheelchair and whispered "ask to go to the bathroom..." Immediately the plan began to take shape, I understood what was going on!
I raised my hand and asked to go to the bathroom, the teacher waved me off so that he could get back to explaining the process of photosynthesis to that diligent 7th grader. I rolled out of the classroom and my friend A crawled next to me, my wheelchair hiding him as we went past the front of the class. Once we were out of the class we fled to the sixth grade wing and went to go visit our teachers from last year... we were free to have a grand ol' time that afternoon, and no one ever was the wiser to our antics.

Okay, so maybe that's not exactly the greatest - most moral - example of 'forward thinking rule breaking' I could have offered from my life. But hey, it was a fun story am I right?

Don't be afraid to break rules because sometimes it's the only way we will ever get anything done. Out of conflict comes not just resolutions but progress.

Do students with a hearing-loss still use F.M. systems in classes? Or is there an app for that now these days? I am only half-kidding with that remark!

For those who may not be familiar with it, this is essentially how an F.M. system works: There is a transmitter and a receiver. On the receiving end is the student who usually wears a little add-on piece that attaches to the hearing-aid. On the transmitter end is a device that can can resemble a microphone and is either clipped onto the teacher, or is placed near the area where people are talking.
Some people may be wondering, well if you have a hearing-aid isn't that enough? Ultimately what is considered to be 'enough' will depend on the student's hearing-loss. For me it wasn't enough because in a classroom setting there are chairs squeaking against tile floors, there are lights humming, radiators blasting, pencil sharpeners churning, lockers slamming, and of course -- other students making their own thousands of noises! (It's really shocking how much noise one 7 year old can make if you give her a pencil, never mind a classroom of 21 others!) A hearing-aid will pick-up on all of these sounds and it goes into the student's ear; so by the time the teacher speaks, his or her voice may be all but drowned out or muffled at best.

With the added use of an F.M. system the voice(s) that need to be most 'focused' on is then better able to be funneled directly to the student via the transmitter. But of course when you give a child any piece of technology or adaptive equipment... in the eyes of a child/student its uses can transmit much much more than just the voice of a teacher, or that group discussion. Here are a few things to NOT do from my own wonderful life experience:

1. Don't leave it in the bathroom. 
In middle school was the time when I first experienced classroom changes. For each subject we had we would have to go to a different classroom, and during that 4 or 5 min transition girls would gab in the bathroom together. I was, of course, barely responsible enough to remember my own homework so giving me the responsibility of taking the microphone from one teacher to the next was a lot. Often I would absentmindedly leave the microphone on the sink in the girls bathroom and then go off to Social Studies class, then suddenly be terribly embarrassed when I heard a toilet *swoosh, flush*

2. Don't ask your teacher about that private conversation.
A common happening with the F.M. system is that it forgets to be turned off. I can't even begin to tell you how many private conversations I accidentally was 'looped into' because my teacher forgot to turn it off, or take off the microphone. Does she really think Stephen peed his pants? Does he really think that Megan's mother is the most annoying ever? Does the lunch lady really despise watching the classroom? Was the bus driver really smoking on the playground? Avoid repeating these stories if you want to avoid awkward moments... for everyone involved.

3. Don't say "said" when the teacher says "Repeat what I said." 
Unless of course you have a teacher who has any sense of humor! I may have mentioned this before but paying-attention is not my greatest strength.. which of course doesn't really help the whole hard-of-hearing-student bit. Often teachers weren't sure if I had just not heard what they were saying, or maybe the F.M. system was malfunctioning, or maybe ...I was just spacing out again and chatting with my friends. I even had lots of crafty teachers who had caught on to my ability to lipread, so to test the F.M. system functioning they would turn away and whisper quietly into the mic so only I could hear, "Sandy if you hear this and if you're paying attention you can have a gumdrop from my desk.." Then they would turn back to the class and call on me "Sandy, repeat what I just said." And 7 times out of 10 I was probably not paying attention and would guiltily say... "...said?" 

This isn't the post that I was supposed to be writing today. This isn't the entry that is scheduled in my editorial calendar (a schedule of posts that I make at the beginning of each month). It's because today I am working with a handicap, a temporary handicap.

The handicap has made it so that what should have taken 30 seconds to type the above paragraph took at least two minutes.

And even as I write this sentence I realize how ridiculous I just sounded. Really Sandy? Shame on you, there are people struggling with worse and do not consider it the end of the world because it is taking longer.
I am extremely embarrassed. This morning the second I realized I'd be working with this handicap I marched my frustrations to a Facebook status! I harped on about how annoying it is that I need to deal with this today, and how irritating the results of the handicap are..  I reacted without thinking.

Broadly speaking a 'handicap' is something that makes success more difficult. But I'm not entering into a competition today, I'm not competing against anyone else, and aside from my usual low-key Tuesday schedule - there isn't anything specific that I need to bank my success on today. In other words, my perceptions of this extremely minor glitch was skewed by the fact that I'm the one competing against myself! 

So what's going on?? You're probably wondering. Here:
This morning I realized the "l" key, the key for the period, and the right arrow key decided to cease responding to the every beck and call of my finger tips on my keyboard. In my mind I had an image of myself copy-pasting every "l" and "." into all that I would have to write today -- and trust me, I write a lot. Then I quickly ran through all my possible solutions: Well I could use Dragon Speak, I could borrow a keyboard and plug it into the USB port, I could use the on-screen keyboard application...And then I calmed down a bit.

I'm the one who decided it would be frustrating to have to put-up with this today. I'm the one who decided to get frustrated because it would take a bit longer for me to get things done today. And I'm the one who decided that this is going to put undue burden on whatever 'success' I was supposed to have today.

But it doesn't need to be that way. I can take the time to work through this silly technological hiccup, I can also take this time to double and triple look-over the things that I write, and I can take the time to understand that a handicap is only perceived as such when we choose to think of it as one.

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!

As I'm sure most of you have probably heard by now (maybe on a device he invented no less), yesterday we lost Steve Jobs, Apple Co-Founder, CEO, and Chairman. Since I'm a gadgety and techy person of course I always stayed up-to-date with Apple's latest rumors and innovations; I was always fascinated by how much of Apple's technology strove to be more accessible -- to everyone, with or without a disability.