Living a life like mine, you get to experience so much joy, so many wonderful opportunities and exceed so many expectations. I wouldn’t trade my cerebral palsy for the world! I am truly thankful for the opportunities I’ve had to educate people, and being able to have a positive impact on other people’s lives. I have an understanding of a different side of life (the medical world) that most people wouldn’t, which in turn has made me appreciate the simple things in life that are so often taken for granted.
I know some may look at my life and say I’m unlucky or feel sorry for me, but I feel sorry for people who don’t see my life the way I do. It is a blessing worth every hardship I’ve ever gone through, because I know when I go to sleep at night that I have changed the way society views people with disabilities, and I am a leader and advocate in this very big world that will one day be changed. I know my purpose in life. I know why I am here, and to me that is a gift far greater than anyone could ask for in a lifetime.
My cerebral palsy was a birth injury, so it’s the only thing I know. In the same way as most people know how to get up and walk, I know how to get up and walk with my walker. I don’t feel like I’m missing out on anything because this is the only way my body knows. Yes, it may look hard to someone on the outside, but for me, it’s just my “normal.” Sometimes people will ask, “Is it hard to walk with your walker?” and my response is “It’s a whole lot easier with it than without it!”
I started using my walker at age 2, and it was then that I started to change some people’s perceptions of people with disabilities. Imagine a 2-foot tall child with a bright blue frame around her as she made her way into the grocery store. How often is that seen? Not very often. Humans tend to stare when they see something uncommon, so just by having people look at me I started to change their perceptions.
Anyone who was lucky enough to pass me on the street, or knew me well enough to know my middle name, always mentioned my never-fading smile. I had what most people would think is a reason to be sad and feel bad for myself, but I didn’t see a reason not to smile and laugh. I believe that you define your disability, your disability doesn’t define you! You have the power and ability to create whatever image of it you would like it to be; it’s all in the way you carry yourself, through the actions you show and the words you speak. That’s why I embrace questions and smile at the stares, knowing not everyone has seen or knows a person with a disability. I want to educate people, letting them know that having a disability is not a bad thing or something we should be afraid of!
I think sometimes we are conditioned to not ask questions, to not talk about a person’s disability because it’s “bad,” or if we do it means that’s the only thing we see in them. But I don’t believe that at all. We need to stop being so afraid of the word “disabled.” We need to stop treating it like it’s a bad thing and that no one should talk about it, because how else are we going to make change?
I also think many limits are placed on people with disabilities, some unknowingly. Mainly, this is due to preconceived notions society has about people with disabilities. That if you have a certain disability then you “must act this way” or you “must not be able to do this.” I call that a “disability mold” and have not conformed to it at all.
Growing up, I saw no reason for me to be treated any differently than anyone without a disability; therefore I created equality for myself. I always did everything everyone else did without ever giving my walker a thought. Or maybe I did, and just didn’t care… I tried out and made the cheerleading team, I did horseback riding and went surfing, I auditioned for parts in plays not written for people in walkers… I went out into the world unashamed of who I am to show that no matter your circumstance, you have the ability to live the life you want.
There are many ways I have chosen to live my life that some people in the disability world don’t agree with. One is that I do not wear AFOs (leg braces) and I wear heels most of the time. Apparently, there’s this unwritten rule somewhere that if you have some issues walking, you probably shouldn’t wear heels. That still hasn’t registered with me yet (ha ha) and if you had something to hold you up as you walked, I bet you’d walk in heels, too! While I may walk slightly more appropriately in AFOs, I have never felt comfortable or confident in them. They hurt when I put them on, and when pain interferes with quality of life and confidence is taken away, they really are no help at all.
Most people might just agree with the experts and go on with their lives, but not me. It doesn’t mean I am not respectful of their opinions or never listen, it just means I have learned I have the power to say “no,” and live in whatever way works best for me at the time, no matter what anyone else says.
Sometimes I think people get so caught up in living the life other people think we should live, the one society expects for us, that we forget we are in control of our own life. It is OK to say no, to stand up for what you believe in and to make the life you want.
In this life, people will tell you that you can’t. That you won’t. That you will never be able to accomplish your dreams. They will label you and place limits on you based on what you are given and how they think you should live. It is up to you to defy them. It is up to you to say “OK, this is the life I have been given and this is what society says I should be, but if I don’t want to live that way, I don’t have to.”
I have proven that time and time again, and I am here to share my belief that it can be the same for you. Rely on your sense of self to know what you are capable of and how far you can go. Just because you are given a certain circumstance with a predicted outcome, that doesn’t mean it’s how it has to be. Your life starts with you, and you have the ability to make it anything you want it to be.
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