Education, education, education!
You know when you lie in bed and your brain won't stop having a conversation with itself? Well, this week, I couldn't sleep and I was thinking about loads of different things. I found myself asking the question 'why isn't Disability Awareness on the National Curriculum?' and, furthermore, 'why can't we start teaching children about disability from an early age?'. From here, I posted a lengthy status on the CP Teens UK Facebook page to see what sort of reaction I'd get. The response was huge! Here is the CP Teens UK status that I wrote:
"I feel that Disability Awareness should be on the National Curriculum from an early age. Some people argue that 'it's too much for children to take in', I understood and embraced disability from virtually day 1 because I had no choice. Young brains can learn a lot, children are not born with prejudices. Why are we effectively giving children the 'choice' whether or not to understand disability? It's not until that 'choice' is taken out of their hands, i.e. they have a disability themselves, they have a sibling with a disability, or a parent with a disability, that they learn and understand disability. Why weren't my friends told on the first day of school in the year 2000, 'Ellie has something called a disability, it means that her arms and legs don't work as well as yours, but she is just like all of you'. Why wasn't there one single PD Lesson at senior school on students/people with disabilities ... we're now in 2014 and this is not rocket science. I'm not disabled out of choice, but you would almost think that by the attitude of some people, both old and young. Bit of a cliche, but the attitudes can be nipped in the bud from a young age. Just like children learn to read, write and add up, they can learn that actually, 'it's okay for Joe in a wheelchair to be my friend', and when they're a bit older they need to be educated as to why 'Joe is in a wheelchair'. Why should able-bodied children get points/stickers/merits etc. for spending 20 minutes at lunch time with 'Joe in the wheelchair'? This is bribery, not education; there is no understanding or empathy there, just a understanding that 'if I do this, I get points!'. I really want to do something about this, I was a 'victim' of the lack of education in the 'education system' for 14 years. You can get all the A*'s in the world, this may gain you a great university place and career, but probably not much else, it's all about understanding people. I'd love to hear all your views/experiences/ideas ..."
I also tweeted about this and also got a huge response. Why are children and young people given the 'choice'? I've got so many ideas about how Disability Awareness could be included in the National Curriculum, and by this I don't mean a teacher standing in front of an interactive whiteboard saying, 'This is Cerebral Palsy, this is Dwarfism, this is Downs Syndrome etc. ... be nice to disabled people (like it's some kind of chore!) ... end of lesson!'. I want children and young people to have an understanding and ultimately, for them to be able to take this understanding into their adult lives. Who knows, what if the children of yesterday (i.e. the adults of today) had a proper education of disability, would I be able to get a job now like most people my age? Don't get me wrong, some people do have a great attitude and understanding, but unfortunately I do have to say that it is a refreshing change to find people like this, especially children and young people. I understand disability and have Disability Awareness because I had no choice from day 1, I have Cerebral Palsy and that is that. I understood, embraced and lived with disability right from the start. People jump up and down and argue that 'it's far too much for children to take in and deal with, let them be children', yes that's all very well, but what about children like me who actually have a disability? We can't hide away from it, and actually, it didn't even concern me that much, all I saw is that I needed a bit of extra help. Young brains can learn a lot, children are not born with prejudices. Why are we effectively giving children the 'choice' whether or not to understand disability? It's not until that 'choice' is taken out of their hands, i.e. they have a disability themselves, they have a sibling with a disability, or a parent with a disability, that they learn and understand disability. Obviously, the education would need to be age appropriate but why weren't my friends told on the first day of school in the year 2000, 'Ellie has something called a disability, it means that her arms and legs don't work as well as yours, but she is just like all of you'. Why wasn't there one single PD Lesson at senior school on students/people with disabilities ... we're now in 2014 and this is not rocket science. Just like children learn to read, write and add up, they can learn that actually, 'it's okay for Joe in a wheelchair to be my friend', and when they're a bit older they need to be educated as to why 'Joe is in a wheelchair' Why should able-bodied children get points/stickers/merits etc. for spending 20 minutes at lunch time with 'Joe in the wheelchair'? This is bribery, not education; there is no understanding or empathy there, just a understanding that 'if I do this, I get points!'.
I have drafted a few letters up to send off to various people, but it's all about getting my point across as clear, concise and effectively as possible, so I am still working on this! It's one of those subjects where I could both easily and happily write 10+ pages, but no one will take me seriously if I send off an entire novel!
Moving on, athletics went terribly yesterday and I could have cried! It made me so incredibly worried for my competition in May. As I've explained before, part of my CP means that I get lots of unwanted and uncontrollable movements, which is not the best of things when you're trying to throw a heavy combination of wood and metal accurately through the air! I am so worried that at the competition, I'll just tense up as they'll be loads of people watching, I'll have an unwanted movement and the club will land at my feet, or even on my head knocking me out in the process! Laura (who I met through CP Teens UK) saw last week how unpredictable my throws can be; if they're good, they're really good, and if they're bad, they're horrendous! However, I'm just going to go along and take in the atmosphere and try and not get to nervous about it. Like my Mum keeps saying, I've not even been training for a year yet, and when my throws are good, they'd be up there on the Power of 10 (the athletics ranking thing) as I looked up the Club Throw and females typically get about 12 metres. I went to Wembley Stadium on Sunday to support my favourite team Chesterfield FC in the JPT Trophy. Unfortunately, we lost, but the stadium played the Paralympic's official song from London 2012, which did put a smile on my face! This week, I have a guest blogger! Chloe Tear has mild Cerebral Palsy and is a CP Teen! Enjoy and thank you very much Chloe!
'Hi guys, Most people will start off by saying their name, age and how Cerebral Palsy affects them... well I'm not. Yes, I do have cerebral palsy, a name and an age, but it's not the most important thing right now. If you have cerebral palsy it can kind of become like an identity badge or a rehearsed speech about how it affects you, and normally a dumbed down way to get the point across before the person becomes bored and walks away. As you probably all know March is national cerebral palsy month and we push to be heard and spread awareness, but, why now? Why focus on March? Why not push CEREBRAL PALSY AWARENESS ALL YEAR ROUND? Yes, this is a cerebral palsy blog, and therefore I'm going to talk about cerebral palsy. However cerebral palsy doesn't control my life despite having a daily impact; it's kind of there in the background, you never forget about it. I do try to put cerebral palsy in the background, as one piece of my thousand piece puzzle, rather then my obstacle. Some days I'm successful and others I'm not, but that's just life. You can just start again with good intentions. However, I'm not the only one who is affected by my cerebral palsy and this is what I want to talk about. The bigger picture. Oooohhh all dramatic, but it's not. I want to talk about how cerebral palsy can affect the people around us, like our friends or family for example. I'm not saying it affects them in the same way, but it's still there. Yes, I do have friends and family who have been with me each step of the way and have seen both good and bad days and they've watched me get better, then get worse. They've been there to help me up but also to create memories. These are responses from a few of my closest friends when I asked 'How does cerebral palsy affect you?' ... "It is always going to be difficult. Having to stand by and watch your friend go through all of this. But I know that its easier for her if she has someone there. I love being that someone, because I know that she can trust me with anything, and I can do the same. I don't think I'll ever understand how much pain she's in, or how difficult daily life might be. But I am so honoured to be able to share a bit of the burden with her. None of this makes it difficult to be friends with her. If you ask me, it makes us closer."
Having a condition that might not always be visible can be hard on everybody. People might not know how to approach things or they might not know whether it's a good or bad day. However, if you are the person that it affects then it's no easy ride either! Always having slight guilt that you are in the way, having to cancel plans because of pain and fatigue or that you are stopping them doing something that you enjoy. Perhaps it's that you always feel like you are always complaining or always asking them for help, like picking something up or pushing you up a hill if you are in a wheelchair. I'm not going to deny those feelings because they are there. "It means that I get to leave the worst subject 5 minutes early (obviously maths) which is good because 5 minutes in Maths feels like 5 years. It means that I get to stick stickers on your splint except I didnt, Because you didnt pick me!!!!! And It means that I get to feel important when people ask me why you need crutches/ a wheelchair and I know the answer :))xx" "Cerebral Palsy means I get out of lessons five minutes early. It also means I do a bit of extra work to help my friend. Because she is the one with cerebral palsy, not me. So I'm not directly affected by it no, but I am affected in a way. I get to deal with the worried girl when she's preparing for appointments, the emotional girl when she gets results of tests that she might not want to hear, and the exhausted, entirely drained but somehow usually still smiling girl at the end of the week. I've known Chloe for 11 years now (I didn't even realise it was that long!) and I've seen the ups and downs she has been through with her life all this time. I remember when everyone got to put stickers on her first splint and being jealous when she got to bring blankets and use microwave heat bags in winter at primary school. I also remember recently persuading her that using a wheelchair sometimes isn't giving up. Chloe is so determined to manage that she doesn't want to accept help when she gets it! But we now know how to deal with the wheelchair on buses (heads up don't leave it folded up with nobody sat with it or it falls over and the driver gets really angry - oops) and the wheelchair has hidden advantages, like skipping the queues in shops and at theme parks, then of course there's the allowing Chloe to get around places easily. In school we are a team. I get the teachers chair and manoeuvre it around the maze of desks whilst Chloe searches for my stuff in my bag. I help her with her notes and we photocopy the things missing in her book. Then we leave the lesson early because we're just that cool. I do it all because she is my friend and that's what friends are for, but it turns out the teacher really does appreciate it, recently he said to me "Thank you Catherine, for helping Chloe in lessons, it makes my life easier knowing I don't have to worry about making sure she has all the work because I know you have been taking care of it all through the course." and although I do it voluntarily, it's nice to know it's appreciated. Cerebral Palsy doesn't just affect those who have it. There is a much wider community of people whose lives are changed by it every day - family, friends, teachers, even strangers - and I suppose I am one of them."