What I say for the rest of my life

I am happy to share all the happiness, struggles, losses, fears, successes, and my decision not to associate my disability with my individual identity. There are times when I hate my wheelchair. If I want to go out, I am unable to do it spontaneously because I have no way of getting there; I have to book an accessible bus first. I can't walk by myself, but I can get into a car with help. I can't tie my shoelaces, but I can dress myself. I can't open my lunch container, but I can use a fork. I can't use a mouse, but I can use a joystick or touch-pad.

I know in my heart that I am a normal girl, but when I meet people they only see a girl who has a disability. And you know what? That hurts my feelings. They can't see beyond my disability and see what I am capable of.  Sometimes they talk about me to family and friends as if I can't understand them, which makes me mad and hurts my feelings.

For most of my life, people have stared at me and I do not like it.  It is rude and makes me feel uncomfortable.  People talk to me as if I am an infant, but I am an adult.  I can do everything that they can do, but I do it in different ways.  It may take me more time, but I always discover a way to accomplish the task at hand.

I like working with computers because they help me communicate.  It is hard for me to communicate with someone new since we are not used to how the other person speaks, but computers compliment face-to-face interactions. Computers have been helping me record my thoughts and feelings since I was very young. Through my writing, I can get my message across with more meaning and clarity.

I have a blog (‘Wheels About’) where I can write about some of the feelings that I have about living with a disability.  One of my blogs that I did it was about a show that Dr. Phil did.  It was about a mom who had two kids who are in their 40’s and have a syndrome called Sanfillipo Syndrome which left them in a vegetative state. The mom wanted to end their lives.

It opened my eyes a lot and I am very lucky that I have two parents who love me and want me to be happy.  They don’t see me with a disability; they see me as their daughter.  It makes me happy, but if my CP was bad enough that I had no life and had no idea what was going on, I would want my parents to let me go because I wouldn’t want them to put me in a institution where I have no freedom.  If I had no idea what day it was or had no awareness of myself, then I would want to die.  I know in my heart that my family would come and see me but it wouldn’t be right for everyone. 

Looking back at where I came from, I am so lucky to have parents as great as my mom and dad. They didn’t let my handicap rule their lives, thereby teaching me that I shouldn’t let it rule my life either.  It made me a better person.  My twin sister and I are closer now than when we were children, and I love that, and am so happy for her and what she made out of her life now.  She’s getting married and she has two lovely kids that I adore, but I wonder about what would have happened if I were her and she was me.  Would I be the same way as her or would I love her like a sister and have not be ashamed of her having CP.

On the other hand, I wonder what would happen if we both came out with no disability.  What would have happened with my life?  Where would I be now?  Who would I be?  Would I be married with kids?  Would I live in Calgary or Airdrie?  Would me, Susan and Charmaine be closer?  These are questions that I have in the back of my mind.  I don’t have answers to them but I know in my heart it doesn’t make any difference because I am so happy with my life now.   I hope one day in the future that I can do everything that I hope and dream.

I look at my sisters lives and I want that for myself. I always look up to them and what they do with their lives. Right now, I have my family and all my friends and I'm happy. If I never find the love my sisters have with their husbands, I have enough already from my family and my friends and that's what keeps me going every day.

I am putting wheels in motion. I want to make everyone understand that people with disabilities can often do more than what their families, friends, and support workers think they can do. We all have dreams and goals that are bigger than buses, schools, and attitudes. I want to show the world that I can achieve anything I put my mind to. I have been told throughout my life about all of the things that I will not be able to do.

I live my life to disprove stereotypes.  I treat everyone with respect and I want people to treat me the same way, regardless of my disability.  I wrote this book so that one day, my friends and I in wheelchairs may be judged on our souls, hearts, and spirits, rather than our medical diagnoses. I don't see myself as disabled.  I see myself as a regular person like you and want people to see me that way.

Thank you to everyone who has believed in me, allowed me to conquer my challenges, and live my dreams.

I can only hope that my book will help end discrimination.

I am not disabled.

I am not handicapped.

I am Shawna Mattinson.