KEEPING IT REAL: Katy’s Story

We’re thrilled to feature several stories from the cerebral palsy community during CP Awareness Month. Katy — the founder of TeenCP and Cerebral Palsy Strong — is sharing her experience first.

KATY’S STORY*
By Katy Fetters

As a young girl, I hardly noticed my cerebral palsy — I guess I was lucky in that sense. I did okay physically and I was raised in a very supportive, patient household. But then, like so many people, I got to an age where that changed.

I became more self-aware. I was aware of the fact that I moved through the world differently than my identical twin sister. I think back to when I was in high school, and at 17, I did everything I could to ignore the fact that I had a disability. I didn’t know anyone else with CP and I felt pretty alone in my experience. I avoided conversations about CP, and in retrospect, was probably pretty depressed and struggled to find myself amid disability. I looked inward and found my voice and so much more through writing about my experiences with CP on my first blog, TeenCP.

What I know now is that CP is as emotionally and socially challenging as it is physically challenging, if not more so. It can be isolating and exhausting — and I allowed myself time to come to that understanding throughout my 20s.

There’s this misconception  that we  “overcome” disability, or that we “accept” our disability with a sense of finality, and that’s just not true. It’s still not easy for me to acknowledge that CP is with me the rest of my life. 

I’ve endured a lot of physical and emotional pain. But with significant support from my community, from my loved ones, and whole lot of love for myself, I am probably the healthiest I’ve been in a long time when it comes to how I relate to my body and move through the world. 

CARVING A SPACE
Before social media, we could really only create content on blogs. TeenCP was the first iteration of a community for people with CP, by people with CP. It was a place to express myself through writing and it offered a way to connect with other teens and young adults.

Then I grew into a 20-something-year-old woman and realized I needed to shed light on this new stage: college, romantic relationships, roommates, and my new, life-changing mobility aid. By that point, we had more interactive platforms like Facebook and Instagram available, and that meant my platform needed to change, too.

I knew I wanted it to feel like it was less about my experience with CP and more about our collective experience. I was learning so much about CP from others and how different the disability was for all of us, and I wanted to illuminate that — to transition into sharing everyone else’s stories. The CPstrong site and our social media channels were the way to do that.

The CPstrong community openly discusses a range of topics — from the physical aspects of CP (the challenge to find and fund mobility aids, shoes, PT, exercise, yoga) to dating and relationships to college and careers to social justice and advocacy. We also swap stories about what it’s like to be in public with CP, how to deal with staring and questions, and how to explain CP to someone who is generally nosier than needed. It’s been great to see people connect and discuss everything so freely, and it definitely shows the need for this community on a larger scale.

BY US AND FOR US
I have big, ambitious dreams for CPstrong. I plan to facilitate this growing community organization over the next few years and dedicate myself and my career to our cause. I seek to continue to build a network of support for ourselves and create educational resources along the way. This has been 10 years in the making and I’ll spend a lifetime advocating for myself and anyone who has felt marginalized because of their disability.

After our first CP Social — an in-person meet-up last year — I realized how deeply this matters to me and to so many others. I enjoy bringing people together so much and I have so much to gain personally from this community as well.

I envision hosting regional events all over the US, in addition to highlighting stories from individuals in our community online. I’m currently building our fundraising platform where donors and members of CPstrong will be able to learn about upcoming events and how to help co-host events of their own. This platform is like a Kickstarter for community-led organizations, and once we gain some greater momentum with it, I plan to host our next event sometime this year.

One thing that’s remained the same over the past decade since I began TeenCP is that this community will always be operated by people with CP, for people with CP. I believe we’ve never had anything like this and we need it more than ever before.

WE’RE NOT ALONE
I hope CPstrong brings everyone in our community a sense of belonging, friendship, support, and motivation. I didn’t have this kind of community growing up and I don’t want anyone else to feel like they have to face CP alone. It’s exciting to think of ourselves as members of the same community because that means we all have the power to define it ourselves. To write our own stories and come together — whether online or at our next CP Social.

A BIT MORE ABOUT ME

What I enjoy most is spending time with my family and friends, being outdoors — especially at the beach — soaking in the sunshine. I love to ride my bike when I get the chance and to go for slow walks in the fresh air.  I always enjoy a strong coffee in the morning or a craft beer in the afternoon, along with good food and good conversation. More recently, I love spending my days with my fiancé and our new puppy, Beck.

Please check out #CPstrong and our Instagram for what’s next. Since March is Cerebral Palsy Awareness Month, I’m hoping to feature more stories from people like us!

*Katy’s story is part of KEEPING IT REAL — a series of personal stories that will take you deeper into the lives of people with CP. Each person makes different choices based on what works for them, and we’ll showcase that — highlighting what life is like for them on a daily basis, what they care about, and the ways CP impacts them. 

The KEEPING IT REAL blog is intended solely to raise awareness about the varied human experience with cerebral palsy and shouldn't be read or construed to contain any medical advice or medical endorsement by Cerebral Palsy Alliance Research Foundation. Only you and your doctor know what's best for you. Please consult your doctor for medical advice.