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

It began something like this: My friend said "I invited a bunch of the other kids from class too! We're having pizza and we might also have a water gun fight, we really want you to come!" This was the age when talking on a cord-phone with a springy wire with your friends was the "in" thing to do. This was back in the day when "hanging-up the phone" required more than just pressing the "end" button.

We were old enough to be left alone to our own devices in the neighborhood, but still young enough to require parental play-date permission.

My permission was granted and my mother dropped me off at my friend's house later that afternoon. This was a friend's house I had already been to hundreds of times before. In other words, my parents felt comfortable leaving me on her living room floor and expected that I would be waiting in the same spot later on that night.
In a matter of seconds a group of my buddies circled around on the floor with me. Looking back at it now, I think their excitement was in part because another one of their trouble-making pals was involved, but also because I was not in my wheelchair. I was in a different state during playdates, one that may have appeared to look more accessible to my able-bodied friends. By this point in our friendship my friends knew that I crawled around, or used my walker that my dad had left on the front porch of her house.

"Some of the boys are upstairs playing video games. Do you want us to tell them to come down? Or do you want us to bring you up?" Growing-up with an older brother meant that I rarely got a turn on the nintendo, it didn't take me long to choose to latter option. My friend dashed around the house probably looking for her mom to bring me up the stairs. Instead,
"...this is my laundry hamper. It has freshly clean underwear in it, I checked. Can you climb in here and then we'll carry you up in it?" I probably nodded, probably also threw in something about how I always climbed into laundry hampers at home. And in I went, then up I went.

Hours after Sonic had raced around collecting coins, our stomachs gave a collective grumble. Back in the hamper I went, and down the stairs we trooped. I crawled into the kitchen, under the dining room table, and climbed up onto the chair - stuffing my face with cheese and pepperoni, swapping gossip and summer plans.
At some point someone got bored, and our 12 year-old selves began to scheme and then the conversation probably went something like this:
"Let's have a water gun fight!" 
"Do we have enough squirt guns for everyone?"
"I'll run home and get mine, and steal my brothers."
"Let's call up some more people and see if they can come over."
"We can all meet-up at the park, by the baseball field." 
"We'll start here, in the driveway. I'll go turn the hose on and fill-up some balloons."

The same friend who had rigged up the hamper idea, now turned to look at me:
"I think I have my old red wagon in the garage. I'll go look for it. But we can put you in that and then you can come with us to the park! We can even put the water balloons in with you." 
She threw a beach towel down on the bottom, I climbed into the red wagon and there was still enough space behind me to stack half a dozen water balloons. Someone had handed me a SuperSoaker and off we went, behind her house, through the wooded path, and towards the park - I bumped along and remember telling her that she was smart to have thought of the beach towel.

I don't remember much from my summer as a 12 year-old, but I remember that day. It was great. Everything about it was wonderful from the creepy daddy long legs that I killed in the wagon, to all those water balloons I got to hurl, to the boy who said "no, I don't shoot at girls", and especially the look on my mother's face when she came to pick me up.
My nike shorts, t-shirt, socks, and puma sneakers were drenched. But I sat on the same spot on the living room carpet, smiling up at her with my arms stuck out - sad to go home, and I knew in my head: this is one of those days that your parents won't ever find out about. This is one of those days that you can leave to their own worst nightmare. Today's the day when you figured things out and they don't need to know how it was done, they just need to know that I'm safe and happy. 

It was the night of my friend J's surprise 13th birthday party. Her parents had ushered all of her friends into the upstairs area of their family-owned restaurant, the lights were then dimmed and we waited for J to arrive.  No one dared to look at anyone else, afraid that one or the other might just burst into laughter and ruin the surprise. We waited.
After a few minutes her parents led a blindfolded J up the stairs and just as they removed it we all screamed "SURPRISE!"
Following the pizza and cake the adults corralled us onto the dance floor. In fact they practically forced us over to the dance floor, not wanting to waste the money they had spent on hiring a DJ, and the fancy rainbow lights that now swam in lazy arcs around the room.

For those of you who have been following the blog, you'll remember that I, being the only person I knew in a wheelchair until age 24, had no idea how to dance in a wheelchair. And actually I didn't learn until the night before prom during my senior year of high school, and for that I give full credit to a quick Google search: "wheelchair dancing." 

So that night pre-2000, pre-youtube video, pre-Google search, I had absolutely no idea how to dance. But beyond being a girl in a wheelchair I was in the 7th grade, and like most 7th grade girls I would absolutely not be caught looking the fool in front of my friends. My plan that night was to avoid, avoid, and avoid. Slowly and painfully the popular kids paired off, most of the girls wiggled and waved their arms around in groups, and most of the boys slouched coolly on the side goofing around with their buddies.


As the dance went on I chatted with my friends, swapped gossip, probably made fun of other kids in that mean way most middle school girls do, and then I saw my friend D sitting alone by himself on the other side. Not thinking anything of it I rolled over to him, making sure to stay on the very edge of the dance floor and out of the spotlight from the glittering disco ball hanging from the ceiling. If I don't touch the dance floor, and the dance floor doesn't touch me - then I won't have to do anything weird. It was like the middle school version of cooties.
"Hi, what's up?" I asked.
D was a twin, the quieter of the two and a bit more book-ish you could say.
"Not much. Having fun?"
"Sure, yeah I guess."
At that age it hadn't occurred to me that boys and girls act drastically differently in the middle of a dimly lit room with a dance floor. Immediately I realized that this wasn't during the school hours, and we weren't sitting next to each other in science class or trying to escape from washing the lunch tables in the cafeteria. Neon lights flashed, spotlights circled all over the place, and just then a slow song came on. There was a mass exodus from the dance floor and the crowd fled to their self-assigned walls.


"Hey Sandy, wanna dance?" He turned to me and asked. I looked at him completely baffled and as disgusted as any 7th grader could.
"Ugh, no!" I stammered.
"Oh.. um okay." I remember he shrugged and quickly looked away. For the rest of that night I spent it on my 'proper' side of the room, and the next day in school everyone talked about having had the time of their lives.

It has been decades since that incident, but in between then and now I have probably done this repeatedly: pretended or hid my actual intentions in order to feel safe. There have been countless times when I have voluntarily dropped the barrier on myself, put up a front, took up an attitude because it was easier to hide than deal. Looking back on that party it's obvious that it wasn't that I didn't want to dance with him, it was because I didn't know how, didn't want to look vulnerable or caught doing something strange. In that moment I jumped towards what I felt safe and comfortable with, and at the time it was to sit on the sidelines and watch everyone else.
Years later I look on that moment as one that I regret. Sometimes we are faced with barriers and other times we latch on to barriers hoping they'll prevent any harm from reaching us; however, most often we'll find that in those instances the harm is in the distance we've created by putting up barriers around ourselves.

In middle school everything I did had to be "cool." Everything from the clothes I wore, the friends I had, the pop songs I belted out, and even the eye rolls that I perfected had to be cool. Given that I had all the legal rights and power bequeathed to someone between the ages of 11-13, "wanting nothing to do with something" meant I threw it into the dungeon underneath my bed or banished it to the dark corner of my closet. It was one thing for me to beg my parents to buy me the latest Airwalks and Vans sneakers, but when someone else forces an image on you - well, usually it doesn't go over too well. Especially if you try that on a 13 year-old middle school girl...

I had changed into a t-shirt and black and white Adidas shorts, I laced up my size 10 Nike sneaks and rolled into the gymnasium with the rest of my P.E. class. And that's when it smacked me across my face: My adaptive P.E. teacher was standing next to it, actually he was towering over it. There it stood in all of its plastic, white, blue, and orange glory: a 4ft tall PlaySkool basketball hoop. I looked at it in silence and for a few seconds no one else existed as I tried to comprehend what was going on. This is not cool. This is absolutely the opposite of cool. This is for babies. I am not a baby. I am more than this, so much more than this.

My friends and the rest of my class all trooped over to the other P.E. teacher, all of them sitting in a circle learning the basics of basketball and how to dribble. Kneeling down, my P.E. teacher tossed me a plastic basketball a little larger than a softball and instead of catching it I fled.

As I wheeled around I heard the ball bouncing on the shiny gym floor and that was the last time I saw the thing. I gunned my power wheelchair out of the gym, down the hall, around the corner, and into the nurse's office. I was humiliated, embarrassed, distraught, angry, confused... and so many other things that, like many other 13 year old girls who get upset, could not clearly put into words.

Okay, let's do a reality check. Despite being smaller than my classmates, and having an aide that I regularly (purposely) ditched while going through crowded halls, I was treated exactly the same as everyone else. Yes, I had help with some things but the adaptation or accommodation was (for the most part) seamless. The special needs that I needed were as cohesive as possible with whatever else was going on. I thought that this is how my disability should be treated. It was invisible, and that was what I had come to expect, it was what I wanted for my disability.
So on that day, without warning, the sudden blunt change was a bit too abrupt. To me that Playskool basketball hoop said "everyone sees you are different, you are small, you are weak, you will always be childish, we will always see you as a child..." And to have the hoop off to the side from everyone else and next to my adaptive P.E. teacher only, in my mind, underlined that difference for me.

For the rest of that Phys Ed. unit on 'basketball' I was allowed to spend it in the library. It took quite a bit of back-and-forth "communication" between my guidance counselor, my P.E. teacher, my parents, and my doctor. But even to this day I'm not sure if any of the adults actually recognized what it was that bothered me, I don't actually remember if any of those 'in power' bothered to ask me what it was I hated so much about it. After that day I learned that while not having to deal with others' image of me was a possibility, I would probably need to learn how to manage it better, and do so on my own. It wouldn't be until years later that I would be better at navigating the image I have and the image others assume for me.

Standing at roughly 3 ft, cruising around in a power wheelchair, bowed arms and with other key features of O.I. it's pretty obvious that I have a disability. Despite all of those visible clues I still find myself trying to hide my disability. My futile attempts occur less frequently as I have gotten older and as I have become more comfortable with myself; when I was younger though, I went through all kinds of ridiculous extremes. Whether it was out of embarrassment, shame, awkwardness, or just a strong desire to fit in - hiding my disability came about in various phases and stages. At first it was hiding physical differences, then it was about hiding my limitations, and as I got older it was all about over compensating for my handicap - pushing my other abilities to draw attention away from the O.I.
As a kid I went through a phase where I spent months getting around in my tricycle only. I rode it around the house, around the neighborhood, even begged my parents if I could take it to school (they drew the line there - but I think I took it to show and tell one time..). Realizing that I couldn't walk without the assistance of leg braces and a walker -- contraptions that no other kid I knew needed, I loved the tricycle because not only was I able to get around without anyone else's help, but other kids used bikes too! In my eyes I could look 'normal' for once!
This was looong before I got my power wheelchair. My physical therapist was still working with me to teach me how to put my leg braces on, how to safely climb in and out of my wheelchair, and gaining the muscular endurance to push myself for longer distances. I wasn't interested in any of that though. I just wanted to pedal away to my heart's content.

Beginning around the third grade through high school - I never wore shorts or skirts to school. During these years was when it looked like I had two knees on each leg. My tibia was incredibly bowed and after one particularly annoying day of kids whispering and pointing at my shin - I refused to show my legs ever again. It didn't matter how hot it was, whether or not the school's air conditioning was working, or if we had gym class - I was adamant about never wearing shorts again. In fact these were the days when I would force the shin guard of my leg brace over the almost 90 degree curve of my tibia; it was common for me to come home with bruises on my tibia from where I had tried to flatten the bone down with the plastic piece from my leg braces. By the time I was in high school I had already had several rod operations and though it no longer looked like I had two knees, the surgical scars on my legs bothered me. The scar tissue ran the length of my shin, from my knee to my ankle and being a fairly private person about my body and the way it looked, I wasn't interested in entertaining the curiosities of my classmates and friends. I didn't think I knew what to say, how to say it, or knew how much information to give. Besides at this age everyone's mentality is to fit in, to not be ostracized, to not show weakness or at least... if you could help it hide your vulnerabilities and oddities.

High school was also the time when I took off with my passion for writing. My English teachers took special interest in my ability to write - be it poem, newspaper article, short story or just a plain old essay. With the guidance and encouragement of a few teachers in high school I found something about myself that was not only hidden, but something (unlike my disability) that I had full control over. I chose which words to use, how I wanted phrases to flow, what images I wanted to conjure in my readers mind, what problems I wanted characters to face, and how everything would be resolved. Immediately (and this is still true today) I recognized the ease at which I am able to express myself through writing - on paper there is no judgment or questioning stares from strangers or my peers. On paper everyone starts with the same blank page, the same capital letter, and ends with the same period. To this day I am painfully cognizant of how I am able to connect with people on paper in a way I haven't found out how to do in person... but I think I'm getting there. So it was, that during high school, I began to 'learn' how to hide my disability behind the things that I am capable of. I taught myself how to draw attention away from what was obvious and became known for the girl who wanted to be a writer instead of "the small girl in the wheelchair." It wasn't long after that I became involved in the student newspaper and the literary magazine, with some persistence and work I changed the way my peers and the student-body came to see me.
I think that every person with a disability goes through something like this. At least I hope everyone does. For me it was a time to discover what I am capable of, what I enjoy doing, and learned more about myself that went beyond the day-to-day challenges I faced. So much of the time the disability might consume our lives that we forget there is a person underneath all of the medical care. And so when the day comes that we finally find something that we can do well, that is safe for us, something that WE CHOOSE to do and to be, and is something of a 'gift' - it almost seems to propel us to some other high that we will cling to and throw at others who don't know us very well, as if to say "here. This is the real me. Not the person you see before your eyes. This is who I choose to be and who I want you to know instead." This self-discovery was like a catharsis 18 years in the making, a relief to know that I had an option about who I wanted to be and what I could be capable of.


On Hiding Myself:

• I think that because I was the only OI'er in my family, and the only OI'er I knew in my life growing up - my attempts at hiding my disability were inevitable. 'Hiding' my disability was my survival technique so to speak, it was how I was adapting to the world and everyone around me
• It wasn't until recently that I came to realize why I did the things I was doing as a kid/teenager. It is one thing to realize your behavior and something else to change it, the latter is what I am slowly working on these days
• Aside from me, my parents have two other children - my two brothers who are unaffected by O.I. My parents didn't cut me any slack because I have O.I. or because I was in a wheelchair; I had the same expectations as my brothers and that was to first and foremost do well in school. With that in mind I don't think my parents realized what I was doing by 'hiding' behind what I discovered I was capable of - instead they just encouraged my skills and strengths!
• I don't regret the way my parents raised me in this way, I've certainly come quite far in what I have accomplished and am proud of all of it. I'm glad that they pushed me and didn't allow my disability to be an excuse and so many times my only options were "yes you can do it" and "you must do it well"
• A part of this entire process, I think, is becoming more comfortable with yourself. Not just what you see in the mirror but the implications of what having O.I. or any disability means. I'm beginning to learn that this 'meaning' won't be set in stone for as long as the status of your disability / O.I. changes and impacts who you are as a person over time. Being okay with this fluctuating and changing status is definitely key     

Tomorrow's Fracture Free Friday post is about my transition to middle school. This got me started on reminiscing on my time during that amazing three years from 6th to 8th grade. Although I may have fractured my femur four times, my arm a dozen more times and had many other injuries - I have nothing but fond memories of middle school. Below are just a few mini-stories I'd like to share: