Showing posts with label OI awareness. Show all posts

In less than a month I'll be taking part in Wishbone Day  - a day of international awareness for Osteogenesis Imperfecta. Obviously it's the condition that I was born with, but there are hundreds of reasons beyond myself for why I will be rockin' out in yellow on May 6th. And to explain some of those other reasons let's look at what's been going on this month alone.

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.