Katy here. I’m the Founder of Cerebral Palsy Strong. What follows is a series of glimpses into the story of how we came to be. It’s a story about how my life is so woven into this work, how a hashtag united us, and why the time is now to bring our future into focus.

a body in question

part one

• a body in question part one •

I’m moved to share a quote by scholar Sarah Ahmed, she says, “Maybe you have been questioned too many times; you come to expect it; you begin to live your life as a question. You feel like a question mark, you feel marked by questions.”

This passage has stuck with me for years because in a sense, my body always felt like a question mark. From an early age, I remember wanting a friend with cerebral palsy and I longed to see someone like myself out in the world — and perhaps this is why. I didn’t want to feel like a question mark and fend off stares and comments from strangers about the way that I moved in the world.

There was a moment I’ll never forget when I was about 12 years old. I was walking alone and happened to glance to my right. I saw myself reflected in a dark window of a store and was struck by the sight of my left leg dragging behind my right. How much my shoulders moved when I walked.

I moved so differently than what I had always imagined and I wondered why CP looked so different for me compared to the few kids I saw in physical therapy. My body was again, a question mark, over and over.

It wasn’t until I reached my mid-twenties that I would feel less so and make many friends in real life with CP that are such unique friendships in their own way because they signify an unspoken bond that I didn't know I could have. It wasn't until then that I would begin to develop a vocabulary for my disability and a sense of pride in being myself.

I've asked myself why that is and have made it my mission to change that reality for others. We shouldn’t have to wait a lifetime to feel less alone. We shouldn’t have to feel like a question mark…

blogged out our feelings

part two

• blogged out our feelings part two •

Before social media, we had TeenCP — a blog where, at 17 years old, I narrated my everyday experiences with cerebral palsy with the hope that I would reach someone like me. A good friend convinced me to write about my life and the ways in which disability impacted me. While I was too young to articulate what ableism was, or how exhausting it can be to respond to, “what happened to you?” and appease a stranger’s discomfort when I whisper the word “disability” — I was old enough to see something powerful unfolding online.

I observed a whole world of people with CP in search of connection, understanding, belonging. Parents of young children who were newly diagnosed reached out, desperate for information. I grew eager to provide reassurance but I was also curious. How many people with the same disability were there, really? What were they doing in life and could we all pursue things like serious relationships, higher education, travel, job promotions and home ownership… wait, what would that look like for me? I didn’t know and had a hard time imagining my future as a result.

By the time I was 20, I looked for a way to amplify others’ stories and began to post guest blogs. (Shout-out to Annie!) In this pre-social media era, TeenCP was a singular place for connection and outlet to explore these questions and shared experiences. Topics like shoes, relationships, and school gave way to a deeper understanding of what it's like to enter into adulthood with a disability.

Through amplifying others’ stories, I realized how common these experiences were; how we often felt a bit lonely and largely misunderstood by our non-disabled peers and underserved by the medical community. While these bonds that we formed online have lasted, I still longed for a way to bring us all together to celebrate what we had created together and formalize what “this” was.

At some point along the way, I made a choice to broaden the focus of TeenCP and how it served the CP community because I didn’t see “it” happening. I didn’t see a place or space we could go to navigate life with a physical disability in any tangible way.

we are #CPstrong — the story of us

part three

• we are #CPstrong — the story of us part three •

By 2017, most of us who ‘met’ as teens were well into our twenties. Some of us went to college or entered the workforce, started dating, traveling — still discovering what to do with our lives, right? Life was happening and we needed to acknowledge this transition into adulthood — to move away from TeenCP; thus, Cerebral Palsy Strong came to be.

We forged better, more expansive connections under this new name on Instagram, where I documented my experiences with a new mobility device called the ExoSym and continued sharing stories of our growing community. Our storytelling was fueled by #CPstrong, our signature hashtag, which established a clear sense of shared identity that took me by surprise. It resonated deeply from day one and we slowly began to show the world that people with cerebral palsy can exist beyond the default disabled story arc of “beating the odds” or “defying expectations.”

Living our lives is not, in itself, inspirational or extraordinary but rather, quite ordinary — and it’s through the act of storytelling that we normalize disability as another aspect of being human. Disabled people like to go out and have fun, pursue a fulfilling career, discover hobbies, travel the world, go to concerts, perform onstage. We may decide to become parents, leaders, politicians, — just like nondisabled people do. My point is, many of us are equally as determined to go after what we want in life, but it may look different from most because our paths are often fraught with obstacles like social stigma, negative assumptions, and inaccessible architecture.

Yet through our collective expression, I’ve learned that we narrate all of this through #CPstrong. It’s about finding ourselves in a world that’s not built for us; building solidarity in our struggles, and experiencing a sense of belonging in the spaces we create.

To me, it’s not about overcoming cerebral palsy and moving on with our lives. The fact is, there is no getting over a lifelong disability. We must learn to live and grow up with this body despite the challenges it presents in our daily lives. And so here is the space where we narrate those experiences.

our future, the story of now

part four

• our future, the story of now part four •

Where we are now is a pivotal moment for Cerebral Palsy Strong. After hosting our first in-person event in 2019, we achieved a decade-long goal to bring people with cerebral palsy together to create a place for connection and community.

It fulfilled a dream I had to meet others like me, but I know that I’m not alone in that desire because our first CP Social would not have been possible without everyone who showed up.

But we all know what happened a year later. The pandemic slowed us all down and changed us in innumerable ways. I still feel called to continue this work because I’ve seen the power behind the spaces we create for ourselves. When we’re all in a room together, something magical happens. We all belong and we know just how meaningful that is.

What’s at stake here is the loss of momentum and support behind this movement to bring people together. For a few years, it felt “too big” and beyond reach but I believe our time is now to seize the opportunity to help our younger generation make connections much earlier in life than most of us did. No matter where we’re at in life, we have an opportunity to support one another, too.

Through sharing our stories and showing up at our next CP Social or hosting your own mini meetup with our support, you can help make this dream feel possible again.

We’re incorporating as a nonprofit organization so that we can formalize this effort and over the next few years, we'll work together to realize the potential this organization has and the impact we want to have on this world.

Cerebral Palsy Strong will exist to serve the CP community unlike any other organization. In this next phase, we'll work to expand our reach, amplify our collective voice, and build community for disabled people in need of belonging and connection. Together, I really believe we can create a stronger presence in people's lives through organizing in-person events, continuing to share our stories, and so much more.

This is a community of care, of connection & belonging and I hope you'll join us for what's to come. If you feel moved to act, please start by submitting your story or registering your interest for our next event.