Showing posts with label disability awareness. Show all posts

"You know, when we were heading out of the stadium people kept looking at me sweetly. It took me a few minutes to figure it out but I get it now. I wanted to punch them in the face." My friend and I were riding the bus back to campus, we had gone to see a Red Sox game at dear ol' Fenway Park. I looked up at him and could only shrug. He didn't have to say more to explain himself, and I didn't have to ask to know just what he meant.
Though my chair was lowered to the ground and he easily towered over me, I too had seen the glances. The look that said oh you're doing a kind thing by taking her out to have fun. It's besides the fact that the game day tickets had been mine. It's besides the fact that I was the one who showed him how to navigate public transportation to the game. It's besides the fact that I was not his helpless younger sister, or some child - but his equal, his friend, a partner in crime. It has everything to do with the fact that those glances decided I was not his equal.

"It's okay just ignore them." My younger brother mouthed to me in the water. I sat nervously on the deck of the swimming pool at the YMCA; it was 20-min of "Free Swim" and kids from all of the swimming classes were throwing themselves in. But first they wanted to satiate their staring appetites on the surgical scars on my legs, and the way the rest of my body bowed in places like the crests of ocean waves.
My younger brother, being shy, was waiting for me to get into the pool so we could play together. He was waiting for his older sister - the one he felt most comfortable around, to goof around with him, to have someone to beat in a race to the other end. It's besides the fact that none of the other kids paid him any attention. It's besides the fact that my younger brother is seven years younger. It has everything to do with the fact that everyone was missing the bit of courage that my kid-brother was displaying, the impatient encouragement he was giving me for my own good.

"Can we have a booth or a table please? It'd be better for my friend.." The rest of her words were drowned out by the DJ giving a shout-out, and the crowd responding with screams that were swallowed by quick flashes of night-club lighting. The hostess peered over her ledger and looked at me, shocked and confused. We stood there looking blankly at her when she fumbled to say something about how tables were closed to patrons when the main dining hours were over.
I began to fidget and gave an upwards swing of my chin towards the exit door. I was trying to say that maybe we should just leave and go somewhere else, but still my friends stood there. After a few minutes my friend finally leaned over the ledger and gestured with her arms towards the side of the night-club, in her mind it was clear that a table and a few chairs could fit perfectly. It's besides the fact that the staff looked shocked and confused when I entered. It's besides the fact that the hostess launched into some defensive explanation. It has everything to do with the fact that one night of letting loose, broadened the idea of expectations and acceptance in someone else's mind.

A: Awareness of yourself and what you're up against should always be at the forefront of your mind.
B: Be yourself. That's the easiest and surest strategy in the face of any difficulty. 
C: Confidence. Have confidence in yourself because when you do, others will follow suit. 
D: Dare to achieve. It's like the game kids play except this time you're only proving it for you.  
E: Energize. This often means resting. Pause for a bit and take a breather. 
F: Focus. Tune out the distractions and hone in on what you want, your plans, your goals. 
G: Growth. When we grow it means progress is present, just remember it often comes with pains.
H: Heart. Act with compassion and sincerity as you strive towards goals. Practice empathy.
I: Imagine. Think outside the box, solutions often require some creative thought. 
J: Join. You're never alone in what you're fighting against. Seek others, join forces. 
K: Keep at it. What more is there to say? 
L: Laugh. Having a sense of humor about yourself makes the process less tedious. 
M: Muster up every morsel of courage and strength in you. Because you are mighty!
N: No. Learn to say that word, and mean it. 
O: Optimistic. Staying positive in your mind helps bring positive results. 
P: Perspective. Keeping perspective allows us to stay realistic about challenges. 
Q: Question yourself. Throughout the process ask yourself if this is what you want. 
R: Rally your friends. Surround yourself with awesome people!
S: Savor your victories. Remember your wins for when times get tough. 
T: Thank often. Those you thank will be quick to return when you need them most. 
U: Unabashed with your efforts. Try, fail, and then try again. Repeat the whole process. 
V: Vent. Bottling up your frustrations can make it difficult to move forward. Air it all out. 
W: Witty. The thing about barriers is that you can always out-wit them. 
X: Xtra mile. Make the journey on that xtra mile frequently, eventually it will lead to success. 
Y: Yin and yang. Strive for balance to stave off stress and other feelings of being overwhelmed. 
Z: Zany. You've gotta be a little off your rocker to be successful. 

Most of the kids in my class were hobbling on crutches, trying to run while pushing a walker in front of them, others were in wheelchairs, and there I was in the center of it all - playing forward position on the soccer field in my walker and leg braces.

It was "Understanding Me" week. In the public school system I grew up in this was the week where fourth and fifth graders learned about people with varying abilities via hands-on learning, guest speakers, and presentations from yours truly. Growing up I never presented to classes other than my own, so it wasn't until I was 9 or 10 years old that I began answering questions my peers had about my life with O.I.  From what I recall my friends and classmates never made a big fuss about my disability or my wheelchair; if anything they liked my wheelchair because around that time I had figured out how to let people jump on the back of my power wheelchair - instantly allowing me to become one of the most popular kids in class.
But because they had also grown up with me since Kindergarten they knew, by then, what to expect from me. My friends recognized that sometimes I would need help reaching something, or opening a door. Other times I would have a cast on and that was an excuse to draw all over it in class, or write messages to each other on the fiber glass. Classmates knew that I loved to read and enjoyed playing with stuffed animals of all kinds. On the playground it usually meant that I would be swinging on my special bright orange swing, or as I grew older it meant that I would be racing around the field with some boy standing on the back. My participation and inclusion in the mainstream public school system, in my opinion and from my vague memories, was that it was seamless. I did everything that I possibly could, but still received the services I required: physical therapy and speech therapy (for my hearing-loss). But even when I was pulled out of class, I was usually allowed to bring a friend along to these 30min sessions - we would play games, they would learn how I lipread, learn how to finger spell, or do exercises on the floor mat with me.

So while my friends saw how I lived my life with them, they had no idea what my life was like when the school day ended. And very few knew what my life was like at home. This was the part of the "Understanding Me" week that I enjoyed sharing with my classmates, that other part of my life. Things like how I moved around at home (at that time mostly by crawling around), whether or not my brothers or anyone else in my family had O.I., how many fractures I have had, or what my first broken bone was. I remember talking about how my parents still had to carry me around "like a baby," that I would never grow to be taller than 3ft., why I needed to wear leg braces, and when my it was that my mother found out "something was wrong." Thrown in with all of the 'technicalities' of my disability there were questions about what I did for fun at home, what I liked to do when I was recuperating from an operation, what my favorite color for a cast is, how come I don't like wearing my hearing-aids, do my brothers tease me all the time, and what does it mean to have metal in your bones? The faces of my classmates were always rapt with attention and respect, they listened and from my memory seemed genuinely interested because I knew that they cared. They cared about what I had to say as a friend, and then they cared because I was sharing something slightly different about my life from their own - and while none of us could have described it at that age, we all knew that that difference was something special and not something everyone got to experience or understand.

It was quite some time ago but from what I remember I wasn't ever "prepped" before I presented. Teachers didn't tell me "okay so this is what you should talk about..." I just.. talked. I answered questions from my classmates as honestly as any 9 or 10 year old knew, and I think it was this factor that made the "Understanding Me" week so successful. On the one hand my friends and classmates learned how people/kids with disabilities experienced their whole life, and all of us came to understand that there is no separation between the 'disability parts' and the 'other parts' of the life that I along with many others in our society live. These lessons and parts of the school curriculum teach every child to respect each other's differences, and allows students to be inclusive and understand how to work/play/learn with those differences -- but also at the most basic level, every human being should be given the opportunity to experience empathy and compassion towards one another.