Let’s get right to the heart of the matter on this communication thing. Let’s drill down to the basics and focus on what it is like to sit in my wheelchair.
I can’t talk; I can’t sign; I can’t write you a note; I can’t walk up to you and introduce myself; and my talking computer is impossible to carry around and extremely tiresome to use. To top it off I have seizures butting in on occasion, scaring people away. My sisters and brothers have similar impediments and some greater complications..
These are impediments which we accept gracefully. However, they are not the sum and substance of our existence. Odd as it may seem, they grant us a unique perspective.
Can you guess what it is? If not let me share a big secret with you. I spend my whole life LISTENING AND OBSERVING.
Let me ask you for a favor. Wipe away all your thoughts regarding my disabilities. Do you really think that behind these bright eyes there is no thought, no intentionality? Do you really think that in all the time I sit watching you and listening to you that I draw no conclusions about you or my world? Its ok if you answer “I never thought about it very much, if at all”. All I ask is that you give it more thought.
So let us strike up a deal. I promise I will never take offense when you stare my way if you promise me that you will never again assume that I or my brothers and sisters are not learning.
To help you along, let me share some of my knowledge. I know when I am happy or sad; I know when my body is comfortable or in discomfort. I know my medical condition quite well as I have overheard my parents and caregivers speak of it thousands of times. I know what’s funny. I go to school, a big one. I see hundreds of children running and jumping every day. I get the drift. Poppy will tell you that I try to walk every day. And if I could I would talk every day. I know all the moves and all the lines spoken in this play we call life. I rehearse them in my head all the time.
Inside I am normal 13 year old girl, buy me a pretty dress and do my hair and I will throw my shoulders back, and show you a big proud smile.
I like going out in public and when I show my glee and flap my hands and rock my chair at the mall, Poppy says ” go girl–let them know you’re here”. This is important to me, because it is me.
I have been fortunate that others have found HERE in me. My aunt was one of the rare ones. She used to babysit me and when all were concerned about my development she remarked that “all the lights are on in there”. She could see it in my BRIGHT EYES. And at that time Poppy did picture drills. He would hold pictures far apart, asking which is which, making me turn my head back and forth, back and forth; like I didn’t know which is which.
He used to take me to Starbucks and we met a jolly old retired man who told Poppy I was sneaky. He said I played shy not looking at people who looked at me; but when they were not looking they got a good eyeballing from me. In fact yesterday, we met a friend of Poppy’s at Starbucks and Poppy got to talking again and telling him stories about me and the man told Poppy that I rolled my eyes at one of his cock and bull stories. I did, but don’t tell him.
I know that we promised to interview others for this edition but it seemed to us that we needed to do a shout out for our HERE, and declare that we spend a lifetime listening, looking and LEARNING. We need more involvement in conversation, even if you have to read our lines. If you get to know us well enough you will learn our lines.
Next time we write we will have spoken to my bus driver, teachers and aides. Should I be so bold as to call them my references! Till then.