World Cerebral Palsy Day: I Can, I Just Do It Differently! 💚
6 October | World Cerebral Palsy Day
There are certain days in the calendar that make you stop and think about your own journey, and World Cerebral Palsy Day is definitely one of them. Cerebral Palsy isn’t something I can switch off for a day, it is part of my everyday life and it makes me who I am.
If there is one thing I would really like people to understand about Cerebral Palsy, it is this: having CP doesn’t mean I can’t do things. It means that sometimes I have to do them differently.
Sometimes things take longer, sometimes I need help, an adaptation, a piece of equipment or a bit more planning. Sometimes I have to find a completely different way of doing something that most people can do without even thinking about it and sometimes something that takes someone else five minutes might take me twenty but that doesn’t make the achievement any less worthwhile. If anything, sometimes it makes it mean even more.
So, what actually is Cerebral Palsy?
Cerebral Palsy is a lifelong condition that affects movement, posture and coordination, and it can affect people in very different ways. One of the things I think is really important to understand is that there isn’t one way to have Cerebral Palsy. It is a spectrum, and two people with CP can have completely different experiences.
When people ask me what Cerebral Palsy actually means for me, I often use an analogy involving telephone wires because it is one of the easiest ways I’ve found to explain it. Imagine your brain is connected to your body by a huge bundle of telephone wires. Those wires carry messages from your brain telling your arms, legs and muscles how and when to move. Now imagine that all of those wires have become completely jumbled up. That’s a little bit like what happens with my Cerebral Palsy. The messages from my brain still need to get to the different parts of my body, but because the “wires” are jumbled, it can take longer for those messages to get through. Sometimes the message gets delayed, sometimes it gets mixed up, and sometimes the message doesn’t get through at all.
That is why something that looks incredibly simple from the outside can sometimes be surprisingly difficult for me. My brain might know exactly what I want my body to do, but getting that message from my brain to my muscles and having my body respond in the way I want it to isn’t always straightforward. It’s also why I think it is so important not to confuse difficulty with inability.
Just because my body doesn’t always respond in the way I want it to doesn’t mean I don’t understand what is happening or that I don’t know what I want to do. My brain knows.
Sometimes my body just needs a little longer to catch up and yes, before anyone says it, there is one thing that analogy can’t really help me with…
Walking. 😂 That’s something I can’t do, and I’m perfectly happy to admit that!
However, walking is only one thing and there is an awful lot I can do. Please don’t see my wheelchair and see a list of things I can’t do.
When people see my wheelchair, I think there can sometimes be an unconscious assumption that it represents everything I am unable to do. But my wheelchair doesn’t tell you what I can achieve. It simply tells you that I need wheels to get around.
I travel, I work, go to concerts, sporting events and go to the gym. I’ve tried new experiences, taken on challenges and worked on projects that I’m passionate about and pushed myself well outside my comfort zone.
There have been plenty of moments where I’ve thought, “How on earth am I going to do this?” But usually, instead of giving up, I’ve tried to work out how I can do it. Usually, the answer involves adapting something, asking for help and sometimes it involves finding an alternative way of doing it. It often does involve a ridiculous amount of planning! But eventually, I usually find a way and that is the bit I wish more people understood. Different doesn’t mean incapable.
My gym journey has taught me this all over again.
For years, going to the gym wasn’t really part of my life. Then I decided to give it a go, and it has become one of the things that has taught me the most about my own abilities.
Walking into a gym as a powered wheelchair user can be intimidating. A lot of gym equipment is designed with non-disabled bodies in mind, and there are exercises that simply aren’t going to work for me in the way they were originally intended to. Sometimes I have to look at a piece of equipment and think, “Okay… how are we going to make this work?” But rather than seeing those things as reasons not to try, I’ve learned to look for ways around them.
Maybe an exercise needs adapting, maybe I need someone to help position something and I need to approach the movement completely differently from the person next to me.
That doesn’t mean I’m not exercising. It means I’m exercising my way and I’ve surprised myself.
I’ve become stronger, I’ve achieved personal bests and I’ve gained confidence. More importantly, I’ve discovered that I’m capable of far more than I sometimes give myself credit for.
My gym journey isn’t really about the weights. It’s about what those weights represent: progress, confidence, determination and being willing to try something new even when I don’t know exactly how it is going to work.
Disability isn’t always about what I can achieve. This is something I think is important to acknowledge too. Sometimes disability is hard.
There are days when things are frustrating, days when accessibility fails me and there are days when I get tired of having to explain why I need something. Some days I wish I could just do something without having to think about how I’m going to physically manage it.
I don’t want to paint a picture that having CP is simply a matter of finding an alternative way to do everything and getting on with it. There are genuine barriers and genuine challenges that come with disability and sometimes I need support. This doesn’t make me less independent or less capable, it just makes me human.
Ask. Never assume.
One of the biggest things I would like to see change is the assumptions people make about disabled people. If you meet someone with Cerebral Palsy, please don’t automatically decide what they can or can’t do based on what you see. Don’t assume that because someone uses a wheelchair they can’t travel. Don’t assume that because someone has a physical disability they can’t work, exercise, have adventures or try new things.
Equally, don’t assume that because someone looks independent they never need help.
I can be incredibly independent and still need assistance. I can make my own decisions and still need support. I can be capable and still have limitations. Those things can all exist at the same time. If you’re unsure whether someone needs help, ask. And if they say no, respect that too.
“Can I help?” is usually a much better question than simply stepping in and taking over and please don’t be afraid to ask respectful questions. I’m more than happy to talk about my CP, my wheelchair and the ways I do things differently. I would much rather have an open conversation than have someone make assumptions because they’re worried about saying the wrong thing.
Education is how things change and I am incredibly lucky. As proud as I am of what I’ve achieved, I also know that I haven’t done it completely on my own. I have an amazing family and a wonderful group of friends who support me, encourage me and help me when I need it. I’ve had people around me who have believed in me, helped me find solutions and encouraged me to try things rather than telling me they couldn’t be done.
I’ve also had access to equipment, opportunities and experiences that have allowed me to live the life I want to live. I know how incredibly fortunate I am to have that but my story isn’t everyone’s story. There are people with Cerebral Palsy all over the world who don’t have the same support network that I do. There are children growing up without access to appropriate therapy or equipment. There are disabled people living in places where accessibility is extremely limited. There are families who don’t have the financial resources to provide the support their loved one needs.
There are people who struggle to access education, healthcare or employment. There are people who are excluded from their communities because society hasn’t been designed with them in mind and there are people who are constantly being told what they can’t do before anyone has even asked what they want to do.
That is why World Cerebral Palsy Day matters to me. It’s bigger than me and my story, it’s about making sure that people with Cerebral Palsy everywhere have the opportunity to live the life they choose, whatever that looks like for them.
Accessibility isn’t a luxury.
This is another thing I wish more people understood - accessibility isn’t about giving disabled people special treatment, it’s about removing unnecessary barriers so that people have the same opportunity to participate.
If I need an accessible hotel room, I’m not asking for a larger room for the luxury. I’m asking for somewhere I can actually get in, easily move around in and use the bathroom.
If I need an accessible entrance, I’m not asking for preferential treatment, I’m simply asking to be able to get inside. If I need additional time or adjustments, I’m not asking for an advantage, I’m asking for a fair opportunity.
Sometimes the smallest changes can make the biggest difference: a ramp, a wider doorway, an accessible changing room, suitable transport, an adjustable piece of gym equipment, clear information or simply someone taking the time to ask what I need rather than deciding for me.
Accessibility gives people opportunities to participate, and participation matters.
My disability is part of my story. It isn’t the whole story.
I’m not inspirational simply because I have Cerebral Palsy. I’m not inspirational because I use a wheelchair and I certainly don’t think disabled people should have to constantly turn their lives into inspirational stories just to make other people feel good.
We’re people. We have good days and bad days. We get frustrated. We laugh. We work. We travel. We have relationships, ambitions and ridiculous ideas. We make mistakes, succeed, fail, change our minds and carry on living our lives. Just like everyone else.
The difference is that sometimes our route from A to B looks a little different and that’s okay.
I’m proud of myself and I don’t say that lightly.
There have been plenty of times when I’ve questioned myself, compared myself to other people or looked at something and thought perhaps it wasn’t possible for me but when I look back at everything I’ve done, I am proud.
I’m proud of the places I’ve travelled. I’m proud of the things I’ve achieved professionally. I’m proud of the challenges I’ve taken on and the adventures I’ve had. I’m proud of the things I’ve tried even when I wasn’t sure how they would work. I’m proud of becoming stronger and more confident, and I’m proud that I’ve stopped letting other people’s assumptions about disability define what I think I’m capable of.
Does CP make some things harder? Absolutely.
Does it mean I sometimes need help? Yes.
Does it mean I have limitations? Of course.
I’m not going to pretend that disability doesn’t come with challenges but those challenges don’t erase everything else.
So, this World Cerebral Palsy Day…
I want to celebrate how far I’ve come and the people who have helped me along the way. My family, my friends, the people who have encouraged me, the people who have adapted things rather than telling me they couldn’t be done, and the people who have believed in me.
But I also want to celebrate every person with Cerebral Palsy around the world who is finding their own way through a world that isn’t always designed for them and I want us to do more.
Because celebrating disability a couple of times a year isn’t enough! We need better accessibility, better understanding and equal opportunities. We need inclusive education, employment opportunities and access to appropriate healthcare, therapy and equipment. We need accessible travel, better representation and, perhaps most importantly, we need to listen to disabled people. So if you know someone with Cerebral Palsy, don’t just ask what they can’t do.
Ask them “How can we help make that possible?”
Because sometimes the biggest barrier isn’t the disability itself. Sometimes it is the lack of accessibility, understanding, opportunity or support surrounding it.
Imagine what could happen if, instead of putting more barriers in people’s way, we started removing the ones that are already there.
I know what I’m capable of, but I also know that I haven’t achieved everything on my own and that’s okay. Needing support doesn’t make me less capable. It makes me human.
Here’s to everyone with Cerebral Palsy: To the walkers, the wheelchair users, the people who communicate verbally and those who don’t, those with visible disabilities and those whose disabilities aren’t immediately obvious. To those smashing goals and those simply getting through the day. To those with huge support networks and those who are doing it with very little support. Your life matters. Your ambitions matter. Your voice matters and please remember: I can! I just might do it differently and if walking is the one thing I can’t do… Well, I’m pretty sure I’ve made up for it in other ways. 😂
Happy World Cerebral Palsy Day 💚
Comments