I am tired. I am tired of being part of a minority that others view being part of as worse than death. I have an I.Q of 119 which is one point short of being considered genius. I’m often the smartest person in the room and because I sit rather than stand I am invisible. I am tired of the bullshit. I have heard that my goal in life should be to work for a cure to my condition. I’m not mad at the medical community for this view I’ve met many people working to change the way they,( medical professionals) interact with the disabled. I am mad at everyone else. Let me tell you about growing up as a special needs kid. I couldn’t functionally push my manual chair but I learned to push my chair in a wheelie for short distances. Why? Because of the other kids in my class, they thought it was cool. Disabled kids have to work extra hard to build friendships, to get other kids to see past the things that are unfamiliar. It never stops, even as adults.
I worked my hands into bloody blisters turning Double Dutch. I’m almost thirty-three and I’m still proud of something that happened in second grade. I don’t care what anybody thinks, I was kick ass at it. Yesterday a dear friend described me as having gleaming eyes and a ready smile. I didn’t have the heart to tell him that he’s one of the few people to see that. That smile belongs to the little girl who turned jump rope and was happy in her own skin and as time passes I see her less and less much to the distress of my loved ones. I learned to play chess that same year and I was good enough eventually to beat the adult who taught me and I made him work for the times he beat me.
Fast forward two years to the fifth grade. Different state. Different school. No gifted class and no chess (my parents can play but life got busy) and a school aide that made every school day hell. She never raised a hand to me but emotionally shredded me every day and managed to convince me that my folks wouldn’t listen if I tried to tell them. Dealing with those scars that she left when I was ten is part of the reason I’m on antidepressants at thirty-two. I’m tired of bullies.
To those who have said that Stephen Hawking is free of his chair or disability please stop. I know you most likely don’t mean to be negative so let me explain why it upsets many disabled people. For people who use wheelchairs, they are our freedom, they allow us to interact with others when we might not be able to otherwise. I will let you on something you might not know. Some of us name our chairs the same way some people name a car or boat. My current chair is purple and is called Kitt, yes, after the car in Knight Rider. I know a guy who has undercarriage lights and a radio with a five-disc CD changer installed on his power chair. They are aftermarket additions but they can be done if you know who to ask. Stephen Hawking contributed so much to science it’s mind-blowing and much of that was after becoming a wheelchair user. Any of us can hope that we have as much impact by the time it’s our time to go. He was told that death was just around the corner from the time he was twenty-one and he took that worth a grain of salt and blew us all away. His chair and his communication device freed him they didn’t bind or hinder him.
I’m not sure if my parents actively meant for this to happen but I grew up a Cerebral Palsy mentor of sorts. This man uses a computer to speak and has around the clock caregivers. Remember what I said about being the smartest person in the room a lot of the time? I’m nowhere close if I’m visiting him.He has two degrees and runs his own business out of his house. I know for a fact that when my parents push me it’s because of what they have seen him accomplish. The odd thing is that when I see him I see him as if the disability didn’t give him weird muscle tension and often time I will see an afterimage of him without the chair, and yes it makes me a little misty eyed because I realize I’m probably one of the few people to ever see him that way. and it’s sad because so many people are missing out on a great guy but I wouldn’t wish him fixed or normal for the world unless it was something he wanted.
I’m done. I’m done with letting bullies and scars and people who don’t live my life imply my worth.I am worth everything an able person is just as I am. and anybody who doesn’t like it can keep their opinions to themselves.