Tag Archives: Disability Advocate

Own your story.

20 Apr

Owning our story can be hard but not nearly as difficult as spending our lives running from it. Embracing our vulnerabilities is risky but not nearly as dangerous as giving up on love and belonging and joy—the experiences that make us the most vulnerable. Only when we are brave enough to explore the darkness will we discover the infinite power of our light.-Brene Brown

When I came across this Brene Brown quote a few days ago, I couldn’t help but realize how much it applied to my certain circumstances. Not just the overall situation of living with Cerebral Palsy, but the more recent circumstances of realizing that I must now face the emotions which resulted from my recent return to physical therapy. Though it would be so much easier to resist thinking about the emotions and memories that returning to physical therapy brought up for me, I know that I must face them if I’m going to be able to move forward.

Throughout my life, I have heard people tell me how awesome it is that I don’t let my CP define me. According to my CP doctor, I “make it look easy.” Though I do understand that most people are trying to compliment me, it’s also hard for me to believe them in the full sense of the phrase. Though I don’t ever introduce myself as “the girl with CP,” I often wonder if that’s what others are thinking, specifically people I have just met. Overall, I try not to let myself focus too much on all of the difficulties it brings, because if I did that, how the heck would I still be able to find joy in the little things? However, at the same time, my CP affects me on a daily basis. Every day is hard, and every day I am reminded of how different I am from those around me. At the same time, I am reminded of how far I’ve come, and that’s where “owning my story” comes in.

Though I began writing my memoir in order to help myself come to terms with what I’ve faced and to help others in similar situations, I have also just wanted to shed a light on just how many of us are struggling in ways people may not truly understand. Putting all the benefits and support aside, “owning my story” through writing about it and essentially saying “Yes, this is who I am, and I am damn proud” has been the most frightening, scariest, most frustrating and overall hardest thing I’ve ever done. In all actuality, it sucks, but it’s helping me. Truthfully, it reminds me of the idea that you’ve got to hit rock bottom before you can truly understand your own strength. It’s cliché, but it’s also true. In many ways though, I feel as if trudging through this first draft of my memoir is similar to hitting rock bottom, over and over again.

Despite the frustrations of “owning my story,” it’s my way of being the voice of so many others who aren’t able to express what it’s like living with a disability. If writing my memoir means I can give a voice to a few of those people, then I will plunge into the darkness of it. Just because there are people who aren’t able to express the emotions connected with what they have experienced doesn’t mean that they shouldn’t have a chance to still be heard. If anything, all of those people deserve it a little bit more. After all, every one of us has so much to learn from each of the people we come into contact with, so why not start by owning the experiences we’ve faced, no matter how scary and painful?

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Sports Illustrated Kids Brings Awareness To CP.

4 Feb

A few days ago, I watched the inspirational story of brothers Connor and Cayden Long, the winners of the Sports Illustrated Kids 2012 SportsKids of the Year award. However, I have found myself watching it more than once over the last few days simply because it’s that amazing, but be sure to have your Kleenex ready!

The story of Connor and Cayden not only brings awareness to Cerebral Palsy, but it also emphasizes that those with disabilities deserve to be treated like everyone else. Connor, brother to Cayden who has CP, has done something incredible. Through his decision to include his brother in triathlons, he is reshaped the course of his brother’s life, whether he knows it or not. He’s making a point to say that even though his brother has CP, he shouldn’t be viewed as any less than anyone else. Through Connor’s desire to connect with his brother, he is giving Cayden a voice that may not have been heard otherwise. He is helping others become more aware of CP and other disabilities, which is definitely needed in today’s society. Hopefully the more aware people become regarding CP and other disabilities, the less fear there will be toward those who are “different.”

The fact that Connor, who is only 9 years old, was able to make so many important points concerning the acceptance of those with disabilities is incredible. Sadly, there probably aren’t even that many adults that would have the courage or understanding to make such claims. Though I know that some of that fear stems from a lack of education and awareness about those with disabilities, it’s why we need more people like Connor who have a background with people with disabilities (whether it’s a family member or friend) and who are not afraid to get up and say what needs to be said. Though there is still a long way to go regarding society’s acceptance of those with disabilities, allowing the public to become more aware through stories such as this is how it begins.

The story of Connor and Cayden is yet another emphasis on why I have chosen to share my own story of CP. Though it may take quite a while for me to actually get my complete story on paper, I know there are people with disabilities who have some of the same pain, fears, hopes, and dreams as I do, but are unable to express how they are feeling or just want to know they are not alone. That’s why I’ve kept on writing. These stories need to be brought to light, both for those who have lived through the experiences as well as for those who are striving to understand just what someone they know with a disability is feeling.

The search for understanding from a disability perspective.

5 Dec

Since I didn’t have someone who understood my pain during my years of intense surgeries and physical therapy for my Cerebral Palsy, I talk a lot now about wanting to be that person for others with CP (or other disabilities) who are going through similar situations. Though I do know that I want to be the understanding ear for those with physical and/or emotional difficulties associated with their disability, it’s only recently that I’ve begun to realize that there still isn’t someone to fill that role within my own life.

Though it is reassuring to know there are so many others who are in similar situations, most of the people I have connected with (mainly through my blog) are in the phases of difficulty I was in many years ago: the intense physical therapy, the surgeries, the nights of crying because all you want to understand is why you have to be different from everyone else. In order to be the CP advocate that I wish to be for others, I’m still looking for an understanding ear, but specifically someone who has already faced the difficulties I’m currently dealing with. However, I’m beginning to realize that finding someone who understands isn’t just hard when you’re a kid. It’s hard at every phase of life, no matter how much you may have progressed from where you were on day 1.

However, it’s also important to make a distinction between someone who wants to understand and someone who can understand. My support group of friends are all people within my life who love me and want to understand the pain and difficulties I have faced and continue to face on a daily basis. However, despite their good intentions regarding every aspect of who I am, none of them fit into the category of being someone who can understand. Though I do not blame them and am still very appreciative of all they do for me, I still want someone who can understand. I want someone who knows exactly what I mean when I’m talking about the pain of post-op physical therapy or how hard it is to simply summon the strength to get out of bed in the morning to continue the daily battle that is associated with living with a physical disability.

Though it may take me a very long time to find someone who can act as a disability role model within my own life, I know the wait will not stop me from being that person for so many others. The recent realization that sharing my own story can help to inspire so many others to keep on going is incredibly special to me. I have seen from my blog posts how much I have helped others who also have CP (and even people who don’t have any kind of disability) to simply keep on going. In so many ways, that is all we can do. Though there many not be too many people who can understand, I will continue to share my story in order to help those who want to understand. It is through those who want to understand that change will come. Since the central part of the search for understanding lies in the need for acceptance, helping those who want to understand is the first step towards achieving some form of acceptance within the current society in which we live.