Bearing Disability: Cerebral Palsy & Me

I have a congenital disability known as Cerebral Palsy. Congenital means I have had this disability from birth. My branch of Cerebral Palsy is Right-Hemiplegia, which translates to mean: right-side half-paralysed. I also get the occasional spasm which makes it Right-Hemiplegia Spastic Cerebral Palsy.

Childhood

As a child, I didn’t really understand what people meant when they told me I had Cerebral Palsy since birth. I just understood that it meant I was different but wasn’t sure how.

But as I grew, I found that I struggled to do things that my friends could easily do, I wasn’t as fast, my joints hurt all of a sudden and there was nothing I could do to stop it.

Mainstream school

I went to a mainstream school and so none of the other children in my year had any physical difficulties. This led me to be bullied and then bullied again because I told the teacher I was being bullied. Even teachers bullied me. One of them would poke my hip and tell me to hurry up when I was standing in a queue that wasn’t moving. Or she’d say that I was too old to be drinking from a bottle. And I shouldn’t be eating my food with only a spoon and my fingers. But that isn’t when my difference registered.

Cat and Mouse

I remember as a child playing Cat and Mouse using one of those colourful sheets with a hole in the middle. I couldn’t balance on the top, I was rubbish as a mouse, and I couldn’t hold on to the sheet with two hands. This was probably the point when I realised I was different the most.

Yet, as my understanding of Cerebral Palsy grew, I never wanted to change it. I didn’t become able-bodied because my disability is apart of me. It is what makes me, me.

Even as a teenager, I was happy to have my disability. Just like primary school, I was bullied in secondary. More so as the mean kids learned to be meaner.  Just like other teenagers, I was insecure.

I didn’t like my body, I thought I was ugly and if a guy asked me out I thought he was joking. I even wondered if my friends were only my friends because they pitted me for having Cerebral Palsy. As I’ve grown, I’ve become more confident and proud. I’ve realised that my friends are my friends because of who I am. They don’t see my disability, they see me.

Attitudes towards Disability

But, I think a lot of people (outside my friends’ and family) believe that a disability makes you who you are. These people probably don’t know anyone or have any experience with disability. But that’s not true.

I think most people, especially people who are born with a disability, accept it. Why?

Know no different.

We’ve had it for all of our lives, and while it can be a pain -literally – we have adapted. We know no different. It’s not like I ever walked properly.

Those of you who already follow my blog would have seen me cook a roast dinner and change my bed with only one hand. I may be different. I may struggle to do things the mainstream way. But I am creative with how I do things – because I have to be.

My family help me with this. Supporting me and helping me to brainstorm ideas to get my independence. I couldn’t do it without them.

Sometimes my disability does get me down. It frustrates me. There are times when I think everything would be so much better off if I wasn’t disabled. Of course I do. It’s the society we live in. It’s trying to become disabled friendly, but there is a long, long way to go.

Then I realise what I can do. What I find second nature and others would struggle with.

I’m proud of what I can do with one hand and I never give up until I find a solution to the task I want to complete. This is difficult in a world built for the able-bodied, but often I can find things by using items that were made for a completely different purpose. An example of this is the chip-pan that I used in my roast dinner video. It’s not a chip-pan to me, it’s a strainer for my veg and pasta. This was an idea my dad had came up with, and one I have used ever since.

The ups and downs

The worst part of Cerebral Palsy for me is winter. My joints seize up. I’m often in pain, have to take lots of baths or apply more heat because just the one side of my body cannot cope with the outside temperature. Not only that, I cannot balance well and winter brings the threat of my archenemy. Snow.

I’ve tried to explain to able-bodied friends why snow is an enemy of mine, sometimes they get it, sometimes they look puzzled. But not having good balance means that just walking outside the door means I’ll fall on my bum. It’s painful and scary, especially as I can’t catch myself like others, so I try and not go outside in the snow.

While this part of my disability is not fun and trying things out can get expensive – I still wouldn’t remove or cure my disability because it is apart of me. I am not my disability. There is always a choice to how you approach disability.

Never changing, same old me

I had a choice when I was younger, and I have a choice now. I could sit around, saying I cannot do that and cannot do this because of my hemiplegia or I can be creative. Find solutions and share them with people in the same situation. I don’t think I’d have the same knowledge and awareness of different disabilities or the same friends if I didn’t have my disability because I wouldn’t be the same person, I wouldn’t be aware of some of my friend’s disabilities and how it affects them.

If I didn’t have my disability, would I have the same determination? I don’t think I would.  It’d be like removing a bad memory.

You learn from your memories and mistakes, but would you take a potion to get rid of the bad memories? Or would you keep the memory to learn from it? My guess is you’d keep it. Just like you would if you lost a parent or a child, so you remember.

It affects you, changes you, makes you who you are.

It’s the same with me. My disability makes me who I am – it gives me my strengths, my weaknesses and I adapt around them. I turn my weaknesses into strengths and I learn. I never let it stop me from doing anything.

Proud of what I’ve achieved

I’ve been rock-climbing with friends, some of whom are in a wheelchair, I’ve been canoeing, caving, archery, zip wiring. I can have a normal life but done in a different way. That’s why I’d not get rid of my disability.

I’m proud of who I am.I’m disabled, but I’m no different to anyone else.

I love to cook, to play games, to write, to read, to take photos, to swim. I can drive and I can do all of these things in different ways. There’s things I can do to have my independence yet that is not the most important thing for me.

Being myself and being surrounded by my family and friends is what is important to me. Because I wouldn’t be able to what I do now without them.

Hope you’ve Enjoyed this post

~Shannon~

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