Katy is an unstoppable woman who built CP Strong, an online community for people with Cerebral Palsy, where they share community and stories about Cerebral Palsy.
Nicole: Tell me about yourself.
Katy: My name is Katy, and I have cerebral palsy! CP is a lifelong physical disability that affects everyone differently — in my case, it mostly impacts the way that I walk so I wear a mobility device called the ExoSym on my left leg. Over the last six years, I've stayed mostly pain and injury free and I'm discovering new things about my body and movement every day. I enjoy being outside and have experienced many beautiful places around the world. In 2016, my husband and I drove and camped all the way down the length of South America from Cartagena, Colombia to Ushuaia, Argentina. I'm feeling ready to make something like that happen again!
Nicole: Is community-building something you've always gravitated towards?
Katy: No! I'm actually quite shy and introverted — but I think most community-building starts out of necessity. What I mean by that is, many social movements, activist groups, sub cultures and communities are ignited in response to something: whether it's in resistance to an ideology or an injustice or a need to feel connected — a desire to belong, to feel understood, seen, and heard. Those are all innate human needs that need to be addressed and this was my way of responding to that in my own life, and what I was seeing around me.
Nicole: What drove you to start CP Strong? How have you seen the community change over time?
Katy: From a young age, I remember feeling very misunderstood in my body — disability wasn't as celebrated and talked about as it is today. I hadn't met or seen anyone "like me" and so I sought it out in my own way. Fortunately, I came into young adulthood at a time that was ripe for online community-building (blogs were all the rage in 2008), so this community grew out of a personal need to connect with other young adults with CP. I'm just lucky I wasn't alone in that. We found each other through my blog called TeenCP and we really "grew up" together online.
As the internet gave rise to social media, and as many of us lived through important milestones like graduating from college and getting our first jobs, serious relationships, breakups, and international trips — I wanted to evolve the community to meet us where we were in life — no longer teenagers. So in 2017, I created Cerebral Palsy Strong, a growing community-led organization, for that to take place. And we're still navigating the everyday, just a little differently.
Nicole: What's your vision for the community?
Katy: Simply, put, my vision is that this community continues to bring people together online and in person — whatever shape that takes, and that we all feel less alone in our lives with CP; that we continue to show the world that we are all #CPstrong.
Nicole: What can people find there?
Katy: You'll find diverse stories of people with cerebral palsy from all over the world! Each person featured on our Instagram has shared their own discoveries about CP, life, and what they want others to know about disability. You may find someone who looks like you, you may find a new connection, and who knows, you might become lifelong friends! Most people I’ve met with CP, I was able to because of CPstrong and it makes my heart happy. I hope others can say the same.
We've also hosted a couple of in-person events and I dream of offering more on a grander scale one day, because there's nothing quite like being in a room full of people who all share such a big life experience as disability.
Nicole: What's an insight or piece of advice that has shaped how you approach life?
Katy: This isn't a piece of advice, but my disability has shaped how I approach life — with a lot of openness, empathy, and curiosity. It's taught me to be flexible and open to all possibilities, no matter how uncomfortable. Whether it's something small like trying new food, taking on a new project, or weighing a risk, I've learned to go for it. Even if I fail, I grow. And I'm at a time in my life where I'm hungry for growth. I come from a family of entrepreneurs and I think we all carry that within ourselves and I’ve learned so much from their endeavors.
I'll share one story from Humans of New York that has stuck with me for a few years now. I could explain why I like it, but I'd rather just let you sit with it, too.
She says, "When a wave comes, go deep…There’s three things you can do when life sends a wave at you. You can run from it, but then it’s going to catch up and knock you down. You can also fall back on your ego and try to stand your ground, but then it’s still going to clobber you. Or you can use it as an opportunity to go deep, and transform yourself to match the circumstances. And that’s how you get through the wave.”