It is cerebral palsy month, so I thought to write a post about Cerebral Palsy and what it means to me now. I had wrote around this topic several years ago, but I have also grown and discovered things since then. You see, when you search Cerebral Palsy online, a lot of the information given is about children and about what they may experience when the child becomes an elder.
There is a massive chunk of lifespan missing. People with cerebral palsy also have teenage and adult lives, but there isn’t much talk about that online. It mostly focuses on the care of a child with cerebral palsy, and then the additional elements (like arthritis and going blind) that becomes more increased with age, but especially age and cerebral palsy.
With this lack of information on teenage and adult years, I have had to learn and grow with it. Every day, I am discovering myself. Some of the things that I experience may also be from my other conditions: dyslexia, anxiety, C-PTSD.
A Cerebral Palsy Childhood
As a child, I was vastly aware that I wasn’t like other children. I could feel it. I didn’t know what masking was back then, but I masked hard! See, I didn’t want to be perceived as different, even though I knew that I was. So, I tried to do things other kids could do. I learned to operate a PS2 controller with one hand, catch a ball with one hand. There were still things that made me stand out.
Running games, like: What’s the Time, Mr Wolf? Stuck in the mud, and tig were hard. There was a high chance that I would be caught before the others because I couldn’t run as fast. But as a whole, I didn’t link my feeling different to my cerebral palsy, not to begin with. This came more in Secondary School (Age 11-16), where kids are realising it is easy to bully someone based on body-image or ability rather than something like their favourite colour you get more in Primary School (Age 5-11).
Childhood was lonely for me, and I really didn’t feel heard, but also people’s perceived notions of me made things harder. I had all the signs of dyslexia but my school didn’t get me diagnosed, leaving me to struggle because they just assumed it was to do with my Cerebral Palsy. I had nothing to tell me any different. Not until a dyslexia awareness day at university (18+)
Self-Esteem
It was around Secondary School where I started hating having to wear a splint on my arm. It was a visual reminder that I was disabled. Sometimes, it would be mistook for a cast, and I would get the “what did you do?” question, followed by a: “oh I am so sorry” when I told them I had cerebral palsy. I also had to have shoes specially made for me and I was only allowed two pairs. For me, this was my school shoes and P.E. shoes. I wasn’t allowed anything that expressed me because my school took up both my shoe allowances.
I gained some low self-esteem because of bullying and other things that were happening while also constantly aware that I was different to my peers. If someone tried to befriend me, or if someone had asked me out, I thought it was a prank. Probably watched too many American shows where the “Fat Girl” was asked out by a bully for the fun of it. I also had trust issues due to an event that happened when I was child.
It still affects me. I hate that I cannot help with things, like moving boxes, cooking, cleaning. I hate that I haven’t found my own way to do these stuff just yet. Sometimes I feel lost in my own body. But I also know its ok to not be able to do something. Usually, I only get frustrated with myself if I want to do something that I find hard to do. To me, that’s a normal experience though. Everyone gets frustrated at what they find hard.
Challenges with Cerebral Palsy
Cerebral Palsy brings some challenges with it. Independence is one (more on that later) but another is navigating the world and the perceptions others have on you. For example, my school assumed that I would not pass my GCSE exams, even though my mocks said otherwise. My report card always predicted me with Ds and Es when I was really getting Cs and Bs.
I’m also self-conscious about the way I speak. I have a speech impediment related to Cerebral Palsy and often have to repeat what I say. Especially to people I have only just met. The worst is introducing myself as my speech-impediment affects my S and W. Both initial letters of my name.
There’s always a nagging doubt when you meet someone that what they see is not who you are as a person, but who you are with your disability. It’s hard to shake. Even now, I meet people who learn I am disabled and I question whether my disability plays a role in the relationship that I have with them.
That, in part, is due to the self-esteem that I mentioned earlier, but it is also in part to do with how we’re taught about cerebral palsy.
PIP Assessment affecting mental health
Nothing made this clear like my PIP assessment back in 2018. I felt like I was strapped to a torture chair, being questioned until I gave the right answer—the right answer being that I wasn’t disabled. When that didn’t happen, the assessor fabricated the report.
They claimed that I wasn’t disabled. It really affected my health and made me question who I was as a person. Thankfully, I had the support of family, friends and peers. But if I hadn’t, I would have been totally lost. They caught me when I was at my low.
It was the government that sent me to that low.
In the UK, there seems to be a tension about disability, with a view that many are just scroungers not willing to work and take other peoples’ money. Believe me, I’d love to be able to work any job. Being stuck at home is boring after while. Imagine a constant pandemic… that’s what life without work is like. It’s why I signed up for a PhD during the pandemic. I couldn’t cope with the boredom.
I know now that not everyone views disability this way, but after years of being told I couldn’t do things because I was disabled and I’d not have much of a life, it is hard yo shake.
Concerns about independence
As a teenager, I still don’t think I was fully aware of what my cerebral palsy would mean in terms of my life. As a kid, everything is done for you. All the household chores, washing, etc. My only job at the time was to go to school and to appointments. My cerebral palsy pain existed but wasn’t as much as it is now.
Now, I am approaching my 30s and I have to think about what my adulthood life will look like. I want children, but I also struggle with basic daily-living tasks: I can’t prepare food using fresh ingredients, I struggle to do things like clean the flat, and basic cleaning chores, I need help with most cooking activities. The
Imagine adding a child into that mix. How would I carry the child downstairs, get it into the car, and bathe it when I struggle to look after myself. Especially as I plan to parent alone.
Even without a child, I have concerns. There will be a time, one day, where I can no longer live with my dad. I wouldn’t be able to cope by myself. I’d have to get a carer in.
Thinking positive
I do feel that, when the time comes, I’ll be able to work it out. When I have a kid, I’ll find a way to do things. I’m the girl who learned to play a console with one hand, tie my shoe-laces, and various other things many people struggle with when they have two hands.
I may be uncertain at the moment on how things work, but I’ll work it out. Even writing this post has gave me ideas. With the household chores, I may need to invest in a cleaner. I also looked after one of my nieces and nephews when they were in their infancy, so I have looked after young children and managed when I had to.
I think, in reality, I’m just scared. But adults do get scared and unsure of the future, right? My fear just has extra elements that makes me unsure. It doesn’t mean that I cannot do things. It just means that I have to find my own way. And I will. Eventually. But that’s what everyone is doing, isn’t it?
Learning about cerebral palsy
Although I am an adult now, I only recently learned that the tightness I got around my joints and the involuntary movements that caused me pain were spasms. No one had ever actually sat me (or my mom) down to explain that. It was only during the pandemic, when my joints stiffened more (probably due to inactivity) that I was told that this was spasms. 25 years, back then at least, and I hadn’t know that these things I had all my life were spasms.
It is a learning curve. As I say, most the information out there talks about children and elders, not adults. There are things that aren’t told to children because they’re children. So as an adult, its navigating it—while also navigating adulthood, and everyone who is an adult knows how hard that is too.
Understanding myself and how I work helps me to become less frustrated though. I am no longer concerned about the tightness because I know what that is.
A unique perspective
One of the questions I have been asked multiple times is would I get rid of my cerebral palsy. If you asked me on a bad day, you might catch me at a yes. But that’s on a bad day, where I’m low, I feel lost. I feel trapped. Catch me on any other day and I’ll say no.
I don’t think I would be who I am today or have the perspective I have now if it wasn’t for my cerebral palsy, or any of my disabilities that I have discovered over the years. I wouldn’t have the understanding of difficulties. My friends would be different. My personality. I might have different interests.
I certainly would be less likely to talk about inaccessibility, and this section of the blog wouldn’t exist. My cerebral palsy is a part of who I am. It doesn’t define me, but it has also made me who I am today.
Reaching Milestones
Milestones may have been slower for me than some able-bodied children. I’m told I learned to walk and talk late. But I managed. That’s the thing. I think there’s a lot of: “they won’t be able to…”
And yh, there are people with Cerebral Palsy who cannot walk. There are things that wheelchair users can do that I can’t, and vice-versa. It doesn’t make use helpless. It’ll be like expecting someone to swim in the olympics because another person can. Everyone has their own own unique strengths. What matters is recognising how far we have come.
So, for me, my greatest achievements is academia. I’ve completed a Bachelors degree, a masters degree and on the way to completing my PhD later this year. This is in spit of the fact my school didn’t believe I could. I have been published once and I’ve had a radio play performed and a movie script rehearsed out.
I may have physical limitations, but where there are limitations in some areas, I excel elsewhere. Sometimes, it’s easy to forget that, especially in a society where asking for help seems to be condemned.
Thoughts on growing with Cerebral Palsy
As I say, its still a learning process, and it will be for the rest of my life. Maybe in ten years, I’ll write another post on my life with cerebral palsy as I approach 40s. However, I am also quiet lucky. I have friends and family that support me. The opportunities I have taken to get where I am now wouldn’t have been possible without them.
I think one of the things I have noticed is that the feelings I have towards not being able to do something is normal. No one can learn something instantly, and the standard way of doing something might not work for me. But there is most likely a way that isn’t standard.
Essentially, my disability encourages creativity because I always have to solve problems. I like that.
One of the things that I am curious about, and that you’ll learn about as I progress through it, is how an electronic splint on my leg (Functional Electric Stimulation) will work. I’m currently on the waiting list for one. So in a few years (because it will take years) I’ll be a cyborg. Honestly, I’m actually excited about it. And if it doesn’t work, it doesn’t work, but hey… if it makes me be able to walk better, without pain, I’ll give it a go.
Who knows, maybe the future is full of cyborgs from all sorts of disabilities. My diabetic friends refer to themselves as cyborgs.