Sport for Quality of Life
Introducing CPISRA Recreation
CPISRA is passionate about promoting sport for recreation, well being and enjoyment, as well as sport development and competition. CPISRA’s primary objective for Recreation is to increase the number of people with Cerebral Palsy and related neurological conditions undertaking regular physical recreational activity. We need to achieve this by inspiring people to try a recreational activity, by raising the awareness of the fun, fitness, psychological, well-being and social benefits of participation and to show the range of possible activities.
What Is Recreation?
For CPISRA, the “R” in CPISRA is for Recreational activities that provide both physical fitness and well-being benefits and meet one the following categories:
- sport with no competitive performance pathway. e.g. Table Cricket, Frame Football, etc.
- non competitive physical activity with a connection to a sport. e.g all ability cycling, recreational sailing, etc.
- leisure time outdoor or related outdoor activity that is physically challenging. e.g. hiking, recreational skiing, etc.
Why Is Recreation Important?
Hi! My name is Katy Fetters and I am the founder of Cerebral Palsy Strong, an online platform for young adults with CP. You might’ve seen the Instagram account, where I often share my own experiences and feature some awesome individuals in our community. Check it out, and please reach out-- I would love to share your #cpstrong story!
I have left hemiparesis and have worn the ExoSymTM kinetic orthosis on my left leg since 2016--it’s an extremely supportive carbon fiber brace that is best described as a hybrid between a prosthetic and orthotic device. It has truly changed my understanding of disability and my relationship with my body and I often think of what my quality of life would be like now if I did not pursue this option. When I first received my ExoSymTM I put all my energy into my gait and worked on breaking poor brain patterns to establish new ones. It wasn’t until earlier this year that I realized I needed something more so that I could really see what I could do. I figured, what better way to challenge myself with this bionic leg than to train for a 3-day, 120-mile multi sport adventure through the Florida Keys?
November 14th, 2018: on the day of my two year ‘exo-versary’ I coincidentally flew out to the Florida Keys with my boyfriend, Josh, to participate in this adventure with Project Athena Foundation. Fresh and in-shape from 16 weeks of cardio-heavy training, we were ready to kayak and bike from Key Largo to Key West (that’s the entire length of the keys!). I had no idea what to expect upon landing in Florida--all that was going through my head was, will my left arm fatigue too quickly on the kayak? Will I be able to keep up with everyone else? As I looked around me, most of these people appeared physically able and experienced adventurers. Ugh. I tried to ease my mind by trusting in all the training I had done to prepare for my first ever endurance event.
I have always been fairly active as I was raised within a culture of health and wellness. I played AYSO soccer until I was 19 and have strength trained regularly for the past decade. And it’s no secret that those with a physical disability have to work harder than everyone else to care for our bodies; even just to move we exert much more energy than your average person. Even so, I truly believe in the importance of getting your body movin’ and blood flowin’. I know it can be hard to just commit to something, I get it. Maybe you don’t feel like you’re any good at every sport you’ve tried, or you become self-conscious in front of other people...whatever it is, I think if you can find something you enjoy, whether through adaptive sports, yoga, a nice swim or bike ride, as long as it makes you feel good and you’re not hurting yourself--your mind, body & spirit will thank you for it.
To my surprise, I think I found commitment in doing this adventure, and perhaps more like this in the future. My commitment to myself paid off--the 3 day long event was perfect in every way; my body felt good and strong the whole way through and my confidence grew with every paddle stroke. And what I appreciated rather quickly was that my fears were never met: everyone was so supportive and we finished as a team the whole way through! I think with CP or not, it’s easy to dismiss something like this as too long, too much, too hard. I have had many moments of doubt about my physical limitations and most of all, it’s scary to think about falling behind everyone in a big group like this. I understand more than most that your body can only take so much wear & tear; I have had my fair share of physical exhaustion on mountain tops and stress fractures in my feet, both of which led me to the ExoSym.TM But what is unique about this foundation is that the only goal of every adventure is just to finish--there is no competitive element, no race, and no pressure to be in the best shape or the most athletic. I felt like this event was made for ‘people like me’ who have mobility issues, who can’t handle a ton of high impact, risk, or really it’s for those who want to get their body movin’ in a fun environment!
This foundation exists to support women who have endured medical setbacks of all kinds and as one of their Athenas, I was sponsored entirely by funds raised by other participants. It was pretty amazing to be the recipient of all kinds of support and kindness and to see other women “paying it forward” by fundraising for this event after they received their own sponsorship as an Athena. I encourage you to apply for one of their grants, it was one of the most rewarding experiences of a lifetime and perfectly suited for people of all ages and abilities. I feel pretty lucky to be sharing this with all of you--to have my health, my fitness, and to recognize that thanks to my ExoSym and this experience, I have really transformed the way that I identify with my body and all it can do for me. With cerebral palsy, I know it can be hard to be kind to your body, to love your body when all it does is fight against you… but what I’ve learned along the way is that this is the only body I’ve got so I better do everything I can to keep it in good health!
P.S. Thanks to my friends Beth Shaver and Dominique Dewitt for encouraging me to take this on, you are both #exosymplyamazing!
Image credit David Guest / Ordnance Survey
Mel Nicholls, T34 Paralympic Athlete and Adventurer, told us why she loves to explore the outdoors.
For me, being in a busy shopping centre, or trying to navigate through crowds either on my crutches or in my wheelchair isn’t much fun. I get knocked off my balance, I feel anxious as I can’t process through the many voices, people rush around you and often into you or landing on you, without much consideration, and generally these places for someone with a neurological disability can be a struggle.
Outside, I am me. The wind might be howling around me, the rain lashing down, and I might be pulling myself up a rocky ledge. But out here I feel alive, I have all the space I need to find my balance and all the time to take a minute and process and work out my next move, my way.
I have always loved the great outdoors, and always had adventure in my soul. I love sport and I love racing, with such a passion. But for me it is about much more than winning. Getting to do a sport that keeps me outside is very important to me, and any chance I can, away from my day to day training, I take to my own adventures. Pushing myself, as I do in my sport, but also reaping the rewards that being outside, amongst nature, in the elements, and in such beauty of our wild world when we take a moment to stop and really notice. It is certainly cathartic. As well as the physical benefits to anyone getting active outside, as someone with a disability I know my time spent in the hills, with the trees in the woods, and climbing up rocks with my arms, continues to make both my body and mind stronger. Parts of my body don’t work and never will, but my belief in what is possible, and mindset grows with each challenge, every time I head out into the unknown. It is calming yet empowering, it helps me refocus, yet I dream up a million plans in an afternoon. It is the best medicine for some time out alone, and yet the greatest get-together for friends and families.
It is important to stretch our comfort zones, it is the only way we improve. If you’ve only ever pushed to the end of your road, you’ll never know just how far you can go. Equally, if you’ve never been camping with your friends and roasted marshmallows on a camp fire, you won’t know just what that kind of an experience can bring. The gain in confidence, independence, friendships, and sense of adventure. Getting mucky and being pushed through squelchy mud is so much fun, for everyone involved! Yes, you’re going to get filthy and mud up to your armpits, but it brings out the inner warrior in you and soon you’ll be using your muddy fingers to paint battle stripes on your face and everyone around you.
I am an adventurer, I seek out wild places and tell untold stories, but adventure does not have to mean climbing mountains and sailing the high seas. Adventure is just as much a state of mind and can be accessible for all. It’s just about finding your way. With the right support you can abseil, raft down a river, take a pony trek through the moors, or spend the day with friends on a hill, with a hot flask of tea and a packet of biscuits. If it’s adventurous to you, it’s your adventure, and to me, there is nothing better.
I know I cannot climb Everest and I cannot mountain bike as I used to down the hills near my home. But through being brave enough to get out there and try, not caring what I look like or how slow I am, I have achieved far more than I ever thought possible and have found ways to do and to ‘can’, rather than to ‘can’t’. I have sat down (stand up) paddle boarded rivers and solo handcycled some of the wildest and most remote islands in the North Atlantic, carrying everything on my bike. I have taken tea (complete with teapot) with friends at sunset on top of a hill after they pushed me up there in my wheelchair to watch the sun go down on Midsummers day, and I have swum off the wild Pembrokeshire coast on a chilly November morning as the sun came up. Most recently I achieved something I have only ever dreamt of for the last ten years since my last stroke. Using specially adapted crutches and an incredible support team, I climbed a mountain.
Every one of those adventures meant so much to me. Many I never knew if or how much I could, and out of each of them I gained so much. Whether that’s learning and growth, or friendships and teamwork, so often moments stripped me back, to give me back me. Physically stronger and fitter and feeling like I could take on the world but at the same time feeling humbled by the world around me.
I have many more plans and more wild places to explore, my way, and I hope through my work and my adventures I continue to inspire others to find their way. I believe we are all Beyond Barriers and there is ALWAYS a way. Here’s to Getting Outside and Getting Active, Adventure Awaits...
Registrations for the Inaugural International Outdoor Recreation Camp is now open! The camp will be held on Monday 23rd September 2019 - Friday 27th September 2019 at the Calvert Trust Lakes District, in England. The camp will include 4 nights and 3 full days of activities and include a mix of individual, group and social activities. The emphasis will be on team activities, making new friends, building self-confidence, challenging what you think is possible and breaking boundaries through outdoor adventure. This inaugural camp is for adults (18+) with cerebral palsy and related conditions and you will be challenged to activities such as rock climbing, orienteering, canoeing, an assault course and much more. All activities and accommodation are fully accessible. Please contact email@example.com for more information and to register your interest.
Cost is £480 per person and is inclusive of all activities, food and accommodation
View the camp flyer here
CPISRA last year undertook a valuable research study looking at developing recreational opportunities. Findings showed that if there were more opportunities to introduce individuals to sports and recreation, or gave them different sports and recreation experiences, this would increase participation.
Calvert Trust is based in Keswick, England within the National Park of the Lake District has been chosen as the pilot location to host the first recreational camp for CPISRA.
The Lake District Calvert Trust provides residential outdoor activity courses for people of all ages with physical, sensory, learning, behavioural and/or mental disabilities. Its mission is to challenge disability through outdoor adventure. Pioneering equipment adaptations, and intensive, instructor-led activity programmes (that include climbing, abseiling, canoeing, sailing, horse/trap driving, archery, orienteering and paragliding), provide an environment whose aims are to teach, challenge, motivate, engender confidence in ability, promote independence, and foster integration. All instructors are highly trained and specialist qualified, and the facilities are specially adapted and fully accessible to all. The Lake District Calvert Trust provides a unique and life-changing experience for those with disabilities, who are encouraged to believe that it’s what you CAN do that counts.
Julie and Lauren summed up the intensive introduction weekend at Calvert Trust exceeded both, Julie and Lauren’s expectations for the weekend. For someone like Julie who has CP and had enthralled of the adventure began from childhood was utmost impressed with the facilities. The high calibre of staff and expertise of the Calvert Trust has to offer ensures everyone regardless of the complexity of the disability, Calvert Trust is well placed to cater all groups and sizes. Calvert Trust will give individuals to challenge their disability in the outdoor.
We are seeking interested participants to attend the first CPISRA recreational camp in 2019.
If you would like more information about CPISRA recreational camp in 2019, please contact Julie or Lauren on: firstname.lastname@example.org or email@example.com
CPISRA has released a series of short videos introducing Julie McElroy, recently appointed CPISRA Head of Development. Julie has a PhD in assistive technology, is currently a researcher with International Public Policy Institute at University of Strathclyde, has undertaken many adventure challenges and ambassador/advocate roles for inclusion with various organisations. As with the vast majority of roles with CPISRA, Julie's role is voluntary and we are delighted and very appreciative to her for accepting the challenge of leading the new Recreation initiative.
In the videos Julie outlines her recreational pursuits and her passion to lead an active lifestyle. Also her hope to demonstrate what is possible in her role at CPISRA. We plan for these videos to be the start to inspiring and raising awareness of recreation opportunities for people with cerebral palsy and related neurological conditions.
We Want To Hear From You
share your recreation stories!
Do you take part in regular recreational sport? Have you achieved something extraordinary, breaking the barriers of your disability? We’d love to share your story. Please email firstname.lastname@example.org to get involved!