Personal views

Cerebral Palsy and I!

As it is the last day of Cerebral Palsy awareness month for another year, I thought I would write a post.

Firstly a definition of what Cerebral Palsy is:

Cerebral Palsy is the name for a group of life long conditions that affect movement and co ordination, caused by a problem with the brain that occurs before, during or soon after birth. (NHS Website)

As I might of mentioned in previous blogs, I have Cerebral Palsy myself. I was officially diagnosed with the condition when I was three years old, this happened after numerous visits to the doctors and other health pofessionals appointments made by my parents. I was born nine weeks premeture, for a premature baby however apart from being very tiny I was reletively heathy. My parents first suspected that something was wrong with me when I couldn’t hold my own head up and I wasn’t hitting other baby milestones. At first health professionals put it down to delayed development and they thought I that I would catch up in time. My parents knew in their gut that something was not quite right so with their presistence I got the diagnosis made by a physio!

My parents didn’t see me any different they just wanted to know what to do next, which consisted of many hospital and physio appointments and even an operation to help me get around a little better, which i’m sure i’ll go in to more detail at a future post!

Anyway I can sense you getting a little bored now reading about my ‘Normal’ life and my i’m sure my reletive standard diagnosis story as I’m sure many people with CP was diagnosed in a similar way. My idea behind me telling you all is so that people get a better understanding of what people with disabilities have to go through. No one with Cerebral Palsy is exactly the same, yes I agree that we have the same condition but we are all unique to how it affects us. A good way of looking at it is we are all butterflies as butterflies my look the same from a distance but they are all unique in their colour and beauty and all fly and shine in their unique glory.

I personally see this with Cerebral Palsy and with other disabilities as the disability makes people shine and makes us the kickass people I know we are by not letting a disability get in our way to achiveing the impossible and conquring the world!

By the way as a disabled person and i’m sure others will agree with me, I dont mind been called disabled its not offensive to me, I know I am disabled and i”m well aware I can’t change it! the word isn’t going to make me to break down in tears, so to all the people that think “we can’t use that word” on the whole you can and you won’t shock me or other disabled people i’ve heard it all before and I’m sure others have as well. I hope others will agree with me on this issue. I personally embrace my disability every day!

So on this last day of the awareness lets contiue showing the ‘ability’ in disabity and be the wonderful unique people we all are with or without a disability, nothing is impossiple the only thing that stops us all is our own fears! Lets together conquar them all one by one!

We can do this one step at a time or in my case one wheel at a time! 🙂

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My Version…..

I often think to myself if people really knew what was going on in a disabled persons head, would we get treated better?

Let’s find out the answer to the question by me been fully open about my thoughts and feelings about being disabled. I must state before I begin this account of being disabled, it is important to note these are my own views and opinions. They are my own personal feelings and experiences. I am defiantly not speaking for all disabled people and saying we all feel like this because I am not! I’m sure there might be similarities but everyone is unique and experience things differently!

Now I have that out the way here goes some of the things I have never said out loud to anyone!

How does it feel to be disabled? Well if people were giving it away for free I wouldn’t be queuing up to get it that’s for sure! I can’t really remember struggling with it when I was younger as I was born with my disability, Cerebral Palsy. My parents say I did struggle and get upset about it but as a child I think I must of known that I was different because of my wheelchair but not understanding why. I asked my parents questions like “why can’t I run around like the other kids? I never missed out on anything, my parents made sure of that! I had a very ‘normal’ childhood. It’s when I became a teenager and into adulthood that I fully realised what the word ‘disabled’ really meant. As a disabled person a lot of the time I feel like I’m in competition with society, if society says I cant then  I  show them I can.

To get a better understanding of what it physically feels like to be disabled I am going to tell you something someone once said to me, (again its not any proven statistics or reaseach its just information that I got told so that I’d understand my disability better) someone who had a disability requires their brain and body  to work three times as hard to do simple tasks then the average able bodied person!

People really don’t realise how lucky they are to be able to just do a simple thing like walking up a step or being able to make yourself a sandwich without a risk assessments being carried out first. I will go into the joys of them beauties in a later post.

I often feel very frustrated that people seem to class me because of my wheelchair as a second class citizen, I often don’t feel valued as a person because I spend most of my day feeling invisible as people are stepping over me or falling over me as they are so wrapped up in their own lives to notice.

Due to my disability I have to rely on other people constantly to help me do everyday tasks. I have wonderful people to help me with this but sometimes I just would love to be able to do it all myself as in my head I feel able bodied and my body is disabled so you can imagine the conversations I have in my head with myself right? I often feel attached to an old lady’s body as it feels like my body doesn’t want to do what my head is saying. I hate relying on people when in my head I’m quite capable of doing everything myself.

Being disabled is just a series of battles between yourself and parents the government professionals and society and its exhausting.

Simple day trips and holidays take sometimes months to plan because all the provisions that need to be put in place to make sure your needs are met.

It also angers me that disabled people also seem an afterthought or the last on the list of priorities when new buildings are been built. We are just as important as everyone else.

Being disabled means I always feel like I am always putting each other’s feelings before my own and I just wish I could scream and say it’s my life not yours, I’m doing this. If I had the chance to redo certain things it would be my choices and I’ll be really happy.

This post will continue at a later date as I could go on and on about my feelings.

Would I change being disabled If I had the opportunity? Yes, in a heartbeat however, being disabled isn’t all bad and I have a wonderful life!

Remember being disabled doesn’t stop you from doing anything and nothing is impossible. Also look on the Brightside!