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THE STORY OF US, THE STORY OF NOW

January 8, 2019 by Katy Fetters

My recent announcement comes with so many emotions. I am excited, nervous, but most of all hopeful. 2019 marks 10 years since I began blogging on TeenCP, and it almost feels like another lifetime. I was a teenager in all regards–uncertain of everything, uncomfortable with my body. I recounted the many moments–good and ugly–in which CP shaped me into the woman I am today.

As with CPstrong, TeenCP was about celebrating (and often lamenting) the ordinary, rather mundane, experiences of life with CP as a young person.

“Navigating the everyday, just a little differently.”

Topics like shoes, dating, physical activity, and high school gave way to a deeper understanding of what it’s like to enter into adulthood with a disability. By sharing those daily reflections and connecting with others like me, I realized how common these experiences were; how we often felt a bit lonely and largely misunderstood by our peers and even the medical community. These bonds that we have formed both online and offline–have lasted many years and I wish to bring us all together for a weekend to recognize the personal and social importance of those bonds.

I grew up wanting a friend with CP but it took me until I was about 23 to meet those few friends in person. I’ve asked myself why that is and hope to change that reality for others. With this event, I want to provide us all with the opportunity to meet one another; to feel understood, seen, and heard by those around us. I believe this is our chance to come face to face and to collectively work on building a vehicle of support for ourselves and our younger generations through CPstrong.

Image By: Amber Ibarreche

Lastly, I believe in the power of telling stories, in the importance of narrating our experiences of disability, however unremarkable. Because we all are out there facing the world, finding ourselves and it is scary and sometimes lonely but by sharing bits of ourselves, we might feel less alone. Maybe, eventually, we may feel less uncomfortable in the world and more widely accepted by those who once feared bodily diversity.

To the world, we may symbolize handicap, struggle, oddity but we know that we are more. I am inspired by the stories & struggles & triumphs in this space—the CP community. Whether or not you realize it, we are collectively narrating the the story of us and re-articulating disability (what it is, what it is not and everything in between.) Because disability is not always about overcoming barriers & brokenness. However slowly, we are challenging the way others imagine disability. And we all have something imaginative to say.  

I am grateful to live in an incredible moment–the digital age–where we now have a space to belong and to make meaning and give voice to what is ours to truly own. There is power in giving an account of ourselves that is honest and messy. With this event, I hope to continue to carve out more space for this messiness in the world because there is a place for it in the here and now.

The title of this blog post is inspired by lecturer Marshall Ganz’s article on mobilizing social action through storytelling and public narrative

Posted in: CP Social Tagged: CEREBRAL PALSY, CEREBRAL PALSY AWARENESS, CEREBRAL PALSY STRONG, CP, DISABILITY, DISABILITY AWARENESS, DISABILITY IS DIVERSITY, STORYTELLING

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