From its very first year in 2012, World CP Day has existed to celebrate people with Cerebral Palsy and those who are committed to improving the lives of people with CP. Katy Fetters ticks both of those boxes, and that’s why she’s our newest World Cerebral Palsy Day Ambassador.
Katy has been working on building connections in the CP community since she was a teenager, when she launched a blog for teens with CP. As a young adult, having outgrown her teen blog, Katy started CPstrong, a blog and network that celebrates people with Cerebral Palsy, and gives them a space to connect.
Katy lives in Boulder, Colorado and has recently completed a Master of Arts in Media & Public Engagement. She’s now working as a Strategist at Crispin Porter Bogusky, an advertising agency.
Fetters is an identical twin, and was born at just 27 weeks weighing only two pounds. While her sister, Sara looked to be free from health concerns, their parents were told Katy had a severe brain bleed and would never walk or talk.
“My dad is a bodybuilder and my mom is quite nutrition conscious, so I was always encouraged to be active. I played soccer growing up, and I’m still really active at the gym and outdoors.
“A couple of years ago I camped and hiked my way through South America with my boyfriend and while we were in Peru, hiked Machu Picchu, which was incredible! I love being outdoors and challenging myself,” Katy shared.
Katy wears a device called the ExoSym, which she says has been life changing.
“The ExoSym is a custom-built brace designed by Hanger Clinic, and while it might not be suitable for everyone, it has made a huge difference to almost every part of my life.
“From the moment I put it on I could tell it was unlike any AFO or brace that I’ve ever worn. It was actually comfortable— on the first day!
“It might not have gifted me the athleticism I’ve longed for, but I can say with complete certainty that I wouldn’t have the confidence to go out into the world like I have been in the last couple of years without it,” Katy said.
So how did the concept for CPstrong come about?
“For those of us with CP, we grew up with it and will grow old with it. There is no ‘getting over’ a lifelong disability. Instead, we need to learn how to live with Cerebral Palsy despite the challenges it presents in our daily lives.
“CPstrong is where we can narrate those experiences – how CP is with us through the best and worst of life’s moments.
“I think #CPstrong is about forming collective identity; finding solidarity in our struggles, and experiencing a sense of belonging in the spaces we create. We may find strength on our own but my hope is that we feel less alone because of the strength exhibited in this community,” said Katy.
What about the CP Social?
“I knew that there was a vast desire among young people with CP to ‘meet’ others, connect, relate and share information, so while I was undertaking my thesis project I came up with the idea to hold a get-together for young adults with Cerebral Palsy.
“We hosted an informal panel of speakers to discuss relevant topics and hold Q & A sessions. It was an amazing success and now I’m working on organising our next CP Social in 2020,” Katy added.
About being a World Cerebral Palsy Day Ambassador
“I’m honoured to be a World CP Day ambassador for 2019.
“One of this year’s campaign themes is #MoveAsOne and is all about everyone getting outside and collectively getting active at 1pm (wherever you are) on October 6. I am so passionate about the benefits of both being active and connecting with your community, so this aligns so well with me.
“A lot of people with CP struggle with exercise, physical activity and sport, and I can absolutely relate! I’ve always been active, but it has never been easy. I know what those barriers look like, and that’s why I want people to know that it is possible, and it can be something that you really enjoy,” Katy shared.
What’s next for Katy and CPstrong?
“While I am still exploring ways in which we can grow, I envision CPstrong as a collectively owned organization that works to build community and make connections with others who have CP—like many of us who subscribe to our hashtag. I sense a huge need for people in our global community to meet so that’s why we will continue to work toward hosting annual CP Social events. Wouldn’t it be amazing to host multiple, all at once, in different parts of our world? Look out for more information on our next CP Social in March, 2020!”
Date: 3 Sep 2019
Category: Quality of Life