What even is 'normal'?!

I feel so bad everyone, I didn't blog last week and it looks like I've not got a guest blogger this week! So, I do owe my apologies. However, without sounding as if I like the sound of my own voice, it'll give me a chance to write a little more. I'm actually thinking that every once in a while, maybe it would be a good thing to not have a guest blogger? It'll give me a chance to talk about things in more detail without you lot having to read essays and essays of writing! This week, I have kind of thought about the question, 'what is normal'? This came about when I was sat with my mum and her group of friends on Saturday night. Most 19-year-olds would be out drinking on a Saturday night, and admittedly I was drinking, but people's sheer ignorance and attitudes has so far meant that I've not yet been able to go properly out. My mum was explaining how some people just don't understand Cerebral Palsy and how people just often avoid taking me places. Wether it's because my mum's friends are just mature women who are parents themselves I don't know, but they were all horrified and one thing they all kept saying independently is 'but Ellie is a normal human being'! My mum's friends hit the nail on the head, I am a 'normal' person who just physically needs help. I then asked myself, all those people who virtually refuse to do stuff with me and/or are awkward around me, do they not see me as 'normal'?! But then I asked, 'what the hell is normal anyway'?! Okay, I have a physical disability, but I'm a human being still. If we were to define a 'normal human being', what on earth would the definition be?! Surely if we could define a 'normal human being', we'd all be carbon copies of one another? It makes me so mad at times that people feel it's best to exclude me because they quite clearly think I'm not 'normal'. I've got news for them, they're not 'normal' either as it doesn't exist, the only time 'normal' exists is on the cycle of a washing machine. I just want people to know if anyone blames you for not being normal for your Cerebral Palsy or any other disability for that matter, take absolutely no notice of them and wish them good luck with trying to find a definition! The other thing that registered with me this week was how when you have a disability, it just becomes a way of life and second nature to your nearest and dearest. The reason why I say this is because I went around to my cousin's one day for a cup of tea, and without even having to ask, she put a straw in it and held my stool whilst I got on it. It's just so lovely to not to have to ask and the thing that I love about my family and close friends is that they'll do it whilst carrying on the conversation or whatever, they won't stop and announce things if you get me? People who don't really know how to 'deal' with CP I find often sort of announce things, for example, 'I'll go in that top cupboard to get you a straw and then we'll cut your meal up' etc., it honestly makes me feel about 2! My mum and her friends were also saying that it wouldn't even occur to them that it was an issue to take me anywhere getting back to some people virtually refusing to take me places, and this is what I mean by I do feel that it becomes a way of life and second nature to your nearest and dearest. It's a good way of life though and I wouldn't change it for the world! This week, I've done 2 interviews for 2 university students, one of whom has a brother with both Downs Syndrome and Cerebral Palsy. I'm honestly so shocked about the amount of interest that this website has received, it's so heart-warming! To be honest, I thought I'd only get a few visitors, it's only little me with CP (and that rhymes) just sharing a few experiences! I thought I'd show you some of my answers from these interviews - if I put the whole 10 pages on, you'd probably fall asleep! So, here you go:

What are the exact details of your disability?

I have Cerebral Palsy. There are about 4 different types and I have Athetoid Cerebral Palsy. My disability affects all 4 limbs, so the full title is Quadriplegic Athetoid Cerebral Palsy. My walking and balance is affected, for example, I walk slowly with an abnormal gait and I can easily be knocked over. My hands are also affected and I really struggle with anything that requires fine motor skills, for example, buttons, pouring myself a drink and preparing or cutting up food. I also have a startle reflex, which is where I jump and totally over react at any sudden or unexpected noises. My speech is also affected.

Why did you set up CP Teens UK?

I set up CPTeensUK as I felt that there needed to be something for teenagers and young people with Cerebral Palsy. I had tried to set something up where people actually meet up, but this just didn't work with teenagers and young people living all over the UK. I had a personal Twitter account myself and I had seen how powerful Twitter can be; I had 'met' quite a few people with Cerebral Palsy on Twitter so I decided to bring everyone together by creating a website. Surprisingly, Cerebral Palsy is quite a 'common' disability, so I am shocked that something wasn't already out there.

Could you share some thoughts on your experiences of living with CP, e.g. best and worst parts?

My thoughts of living with Cerebral Palsy are that there are actually much worse conditions that people live with on a day-to-day basis, I am very lucky. Even if I did see it as unfair, there is no point moaning about it and dwelling on it because I can't change it and neither can anyone else. I feel that having Cerebral Palsy has given me a slightly different perspective on life as well as the 'normal' perspective; obviously Cerebral Palsy is a physical disability, so when I was younger instead of running about, I sat and watched and spent a lot of time around adults, so I do think you can have a level of maturity that your peers don't necessarily have. I do feel that in situations that may seem a bit stressful, unorganised etc. to your average person, I often just take it as it comes; I think you just get used to things not always going to plan. My experiences of living with Cerebral Palsy is that some people who you think are 'friends', often don't always turn out to be friends; I've been left out of so many things and it is upsetting, but rightly or wrongly you do get used to it and it's got to the point now where I just have to laugh! I do sometimes feel like saying, 'my disability doesn't matter to me, so why should it matter to you?!'. The best part of having Cerebral Palsy is definitely queue jumping; it's great at Alton Towers to just wander straight onto the rides! Also, although sometimes it is annoying and rather embarrassing if I don't remember them, people do recognise me and remember me, which is quite nice! The worst part of having Cerebral Palsy is probably the uncertainty and having to say 'no' to things even though you really want to say 'yes'. With the uncertainty, it's stuff like will I ever be able to do this or will that ever happen? Where as most people can literally say 'I will do this' etc. Although I'm a big believer in things don't happen unless you make them happen, it is easier said than done when you're relying on others and/or there's people saying 'no'. Saying 'no' to things when all you want to do is say 'yes' is also hard, for example, your friends are going somewhere but there's a really long walk/steps to get there so you have no choice other than to say 'no'.

How did they idea of your website come about? What is the main idea of the website? What does the website do? The idea of CP Teens UK came about when I left school; I was feeling a bit isolated as my friends were very much getting ready to move to university and they were all entering a new world away from home which didn’t really include me. I just felt that if I was feeling all these weird emotions because I was physically unable to get myself out there, was there anybody else? Furthermore, I looked back to myself at aged 14-15 and remembered how I honestly thought as if I was the only person on planet earth with Cerebral Palsy; I would have loved at that age for another teenager/young person with CP to have created a website, sharing stories and almost saying ‘it’s okay, I’m like that too!’ So with the combination of these two and the amazing response I had on Twitter, I decided to create CP Teens UK. The main idea of the website is to create an online ‘community’ for teenagers and young people with Cerebral Palsy. However, it definitely isn’t limited to teenagers and young people; I’ve had older adults with CP use the website and also a lot of parents with younger children who have Cerebral Palsy. The website provides a blog, which I update every week or so and I also include guest bloggers; to date I have had physios, teenagers with Cerebral Palsy, parents of children with CP and adults with CP guest blog. I share my life through the blog in the hope that it might just help somebody else; I often laugh and joke about my little ‘Cerebral Palsy incidents’! The site also has a forum where people can discuss topics and get to know one another.

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© CP Teens UK 2020.

Registered charity - 1172105

 

Website by Ellie Simpson.

CP Teens UK is committed to the safeguarding of children & vulnerable adults.

DISCLAIMER: This organisation & website is run by people with Cerebral Palsy, for people with Cerebral Palsy (and other disabilities). No medical experts or professionals on Cerebral Palsy, or any other disability, were involved in the making of this website.

CP Teens UK

Office 7

The Community HUB

East Stand

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