Showing posts with label high school disabled student. Show all posts

This is a guest blog post from my friend K who talks about her ideas of being different and seeing different. She is much more gutsier than me when it comes to physical appearance, so I'm glad that I have someone a little more willing to let us in on her thoughts on such tricksy topics. 
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My goal at the end of this entry is to figure out why I was so scared of, embarrassed by, distancing of, and well, on many days just downright pissed off by my disability as a teenager. So here we go.

It wasn't just that I struggled privately to fit in. So privately in fact that when I broke my ulna getting a snack out from the vending machine, I went and told my favorite teacher first before going to the nurse's office.
The sleeve of my t-shirt caught on my joystick as I leaned forward to get my snack out. I rammed face forward into the vending machine, I felt the bone crack, and I'm sure if anyone in that cafeteria was paying attention - I'd quickly become the laughing stock of the high school in no time! But no one was paying attention as I discreetly untangled myself. Immediately my gut instinct was: I can't tell any of my friends about what just happened, not even my best friend. I need to tell an adult I can trust, someone who will not be annoying and freak out in that annoying way. For me that person was my 9th grade English teacher whose class I had the next period. I slipped into his empty classroom and told him, quietly. He looked at me and told me to stay put and then he left. (To get the nurse, and presumably to tell her to not freak out in that annoying way...) I sat in the empty classroom and read ahead in Catcher in the Rye while I waited.

The point of that snippet isn't just to explain that every kid needs to have a trusted adult, not just in their lives but in their school! That memory also serves to illustrate how I wanted to fit in so badly that I risked being in pain for fear that my friends would find out what they already knew: that I have a disability and that my bones break easily. Of course the sequence of events now doesn't make sense to me, but it was crystal clear in my head at the time.
I didn't want things to be a big deal. I didn't want things to be bigger or more noticeable than whatever impression my wheelchair, or my hearing-aids gave off. And those impressions as far as I was concerned were all negative, or on a good day they were at best 'awkward.'

Why was this?

It's beyond the fact that I didn't see or know anyone else who used a wheelchair like me. It's about more than just having always been the only kid in a wheelchair at school. I believe this because at that age I'm pretty confident that even if there was another kid in a wheelchair, the last thing I would have done would be to befriend them. Because the thing is I hated being someone with a disability at the time. It's not because I was ever bullied for it - (because I was that kid in school who had a swift and biting comment for everyone, unafraid to mouth off with a smart aleck comment at both peers and teachers.) Now that I've popped enough zits, taken enough standardized tests, found the right balance between deodorant & perfume to claim my scent, and been on enough angsty teenage dates where we never left the car.. I think that I can shine some insight onto why I was so despising of this part of myself:

There was no place or reason for me to feel proud of my identity as a disabled young person. The environment that I was in (by no fault of their own!) just didn't have a place where having a disability would get me more friends, earn top grades in class, be invited to parties on the weekends, get me into college, allow me to earn my driver's permit, or even something as simple as just talking about it. Instead it was just some label that as far as I was concerned, sent me to the nurse's office or got me picked up from school early to go to my orthopedic's office. It was just the reason for why sometimes I got to skip Spanish class because I had physical therapy. It was the reason for why I had my own gym class where I was either doing cardio, swimming, or playing badminton - by myself or with the Adaptive Phys Ed teacher.
Thinking back on it now I realize that at that time, even if it's with just one other friend be they in real life or online - it matters a lot that there was some kind of space or time where a teen might be able to feel proud of the various aspects of who they are. Maybe it's debate team, maybe it's the school play, maybe it's on the soccer field, maybe it's online with video games, maybe it's at temple or church.. but at the time I hadn't found a space to feel proud of being disabled.
Not knowing what else to do with 'being disabled' aside from treating it with surgeries and casts - I found it easier to squelch and hate it. It's true what they say, it's easier to hate something than to love and understand. Too easy, in fact I realize that now. Being disabled wasn't what made those four years of high school so difficult and miserable, it was the way I saw 'being disabled.'

Thoughts of what may have been or could have been don't really serve any purpose for me. Instead what I can do now is to write honestly about my experiences when I was a teen. I can be involved in youth programs through Easter Seals. I can wear an awesome Don't DisAbility t-shirt.. because who knows the impact I might have by being visible, and creating that sense of pride no matter how small it might be.

Readers of the blog know, by now, that I don't hate that part of myself anymore. It would be great if every young person with a disability could say that about themselves far sooner than I did.

I've learned from this that sometimes it's harder work to find where you fit in, but you can be sure that when you do put that effort in - you won't ever lose out. You won't.

We both know that you're only pretending not to listen right now, so let me just state my two cents and then you can go back to writing poetry while you listen to Linkin Park at full blast.

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. 

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.

My friends enjoy teasing me for these and I have come to accept that I cannot go anywhere without at least one awkward moment.


1. Don't text and drive. Even if it's your power wheelchair. One time I was busy texting and soon found my head met the rear-end that belonged to a short old lady.

2. That time I only had 3 wheels on my chair. One of my rear wheels had fallen off - allegedly because one of my closest friends had been sitting on the back of it too much and it took the wheelchair company WAY too long to get a replacement part. The day that wheel fell off I had a mid-term in one of my classes and when my professor saw me she thought I was insane for rolling the 7 blocks to make it anyway. And trust me, if THAT professor was calling me insane.. then I guess sometimes my judgment can be really questionable.

3. Classy goes messy. It was a school tradition that the President served students breakfast. There were lots of administrators, deans, professors and tables stocked with food that had been nicely decorated. A corner of the tablecloth to one of the buffet tables got caught in my tire and BAM... onto the floor go an entire plate of cannoli's, pancakes, fruit.. I looked around and all I could say was "I guess the 5 second rule doesn't count?"

4. Painfully speechless. The editors of the high school newspaper were called in for a meeting that morning and there were bagels for us. It was an important meeting because we were having personnel issues and as I went to bite into my bagel - for whatever reason - the back of my jaw snaps. I sat for the duration of that incredibly tense meeting with my mouth shut, an un-chewed bite of bagel in my mouth, and just nodded and said "mmhmm" the whole time. Later on after school I went to the ortho and found out my jaw was broken - no fun at all!

5. The Claustrophobic Aide. In 9th grade my aide was claustrophobic. The reason why the school had hired her to begin with? So that she would go in the elevators with me as a preventative measure in case I got stuck or the elevator broke. Did I mention? She was claustrophobic... which means she never went in the elevators with me. Instead she would meet me at the next floor in front of the elevator doors and listen to make sure it was still running. Now that I think about it.. this incident deserves its own blog entry. It's an epic tale of youthful rebellion: The Time Sandy Staged a Coup & Got Rid of the Aide ;-)

This week's Fracture Free Friday post marks the blog's 30th entry! The growth of this project has been astonishing and even more admirable are the people, new friends, and the community that has welcomed me.

"A Different Perspective" will feature posts from those who are close to me. I thought this would be a great way to let you guys 'meet' people in my life and get a glimpse of the people who make me who I am today!
This post is from one of my close friends from high school. T is not only my personal ride to everywhere around town but one of the most dependable and charismatic people I have ever met. I'm lucky to count her as among my closest partners in crime! 

The first time I saw sandy was when she shyly rolled into our chorus classroom.  Our boisterous teacher told the entire class before she got there about the wheelchair and a couple other things we could expect about Sandy. I thought it strange at the time that she would "warn" us.  Maybe she said it so we wouldn't stare or make comments.  I suppose you really can't trust a bunch of 14 year olds to always make the best decisions. Sandy was a soprano, and sat right by me.  Of course, I'd never seen someone like her before and I was curious, but tried not to stare.  I remember introducing myself and saying she was welcome to come have lunch with me and my friends.  I remember thinking she seemed really shy, but extremely self assured. Plus, she had a really sweet wheelchair. 
As the weeks went on, Sandy and I developed a friendship.  I remember asking what she thought about our chorus teacher introducing her to the class like that and I think that she was embarrassed. She just wanted to fit in and felt that there was too much information given to a bunch of strangers about her.  I think that getting to know Sandy means you get to know about the problems she faces.  Yes, anyone can go online and look up her condition and realize that bumping your backpack into her arm could break it, or that she probably won't grow past 3 feet tall, but being friends with Sandy has been a wonderful experience. High School certainly would not have been the same without her.

Being friends with Sandy definitely had its perks.  We got to ride in the private bus to school events and I got to control the joystick (sometimes "recklessly") and drive her wheelchair down the hallways. Her snazzy wheelchair was also a great spot to hang my dangerously heavy backpack and I got to hang out in the nurses office with her instead of going to class. Once I got my license, Sandy and I would go on adventures around town.  My car (which I recently sold - sad-face), was nice and low to the ground and Sandy had no trouble getting in and out of it from her wheelchair.  I finally got the hang of folding it up and putting it in my trunk.  Seat-belt buckled. Seat cushion removed. Fold Inward.  Angle directly into trunk.  It was a process, but each time was worth it. I remember one time, while driving around, Sandy asked where we were, and I thought to myself, 'clearly we're driving through the center of town', but then I realized that Sandy couldn't see out of the window! It was an odd realization that all she could see was the trees and sky above us. 

As graduation from high school approached, I was proud to know that I would be walking with Sandy during the graduation ceremony.  This also meant that all our friends got to sit in the front row (pretty awesome!). I was also glad that Sandy would be attending college across a river and a couple miles away from me.  As we started the journey of post High School life, it was empowering to see her face the challenges of college and living on her own for the first time. 
Each winter, our group of friends from HS would host a holiday party, and we would always figure out a way to get Sandy inside and around the house, through the rooms and (most importantly) to the food.  We have celebrated the holidays with her for the last 10 years and have even made it through a couple blizzards. One particularly memorable moment occurred during a huge snowstorm in which we had to get Sandy home in my little car without snow tires.  It was very slow going, but eventually we got to her house, which of course was on a hill and couldn't get into her driveway because of all the snow.  So we had to extract the wheelchair and carry her into the house.  Of course we were laughing the entire time at how silly it was that we were so determined to have a party that we put ourselves through treacherous conditions to make it happen and have everyone there.

The old HS gang at our annual holiday party