"Are your legs just in a bit of a mess?" Child aged 5

I am hesitant to write this blog, partly because it's quite an emotional one but also because I don't want my next statement to be seen as an amazing feet of acceptance. Here goes: if I were offered a 'cure' for Cerebral Palsy or a magic potion that would make me able to walk I wouldn't take it. I realise that for a lot of able-bodied people this seems very strange but I wouldn't. This does not mean either that I don't find being disabled incredibly indescribably hard at times and always will but you see being disabled in a very complex thing. I have felt every emotion possible connected with having Cerebral Palsy and they are not always linked to finding things difficult.
When I was young, physios suggested that I have Botox in my legs to reduce my spasticity which I refused, not only because it was a physio's suggestion to which all my responses were no but because I find the idea of numbing my legs and therefore my condition hugely upsetting. I've always been protective over my legs because they are my emotional radar and I love that fact. I love that all I have to do is look at my legs to assess my mood. I am uniquely connected with them and this connection is something that I'd hate to lose. I would hate for them to be still because they never are and I wouldn't feel like myself.  I believe that for whatever reason, I was meant to have Cerebral Palsy, that my body is wired this way naturally and there is no need to alter my neurology. I think being disabled has given me insight into a world that I wouldn't have known and keeps me humble. I think the way that I relate to children is partly enhanced through experiences that I've had because I'm disabled. Most of all, I think there's a lot that needs to change in terms of how we view disability and I'd rather change this than myself. Cerebral Palsy lives in me and we have a nice arrangement (most of the time).

Your world quickly divides into those with imagination and those without

One thing that strikes me about being disabled is how it affects my ability to connect with others. This is because when you have a lifestyle that is out of the ordinary a lot of people just don't get it. I can understand to a certain extent that people are frightened of offending me, patronising me or feeling awkward but it's bloody annoying that I face the same ignorance over and over again. I find that people who I really connect with, have an ability to imagine what my life entails. I dont mean that they neccesarily have a profound insight into disability although that is obviously useful. I mean that they'll see me coming and open a door for me, or they'll ask if I need anything moved to make it easier to get around or they'll see me struggling to move a chair and they'll help me move it instead of watching me do it. You might think that most people would just do these things but I have not experienced that. People who do these things for me are a rare breed. I know I've said it time and time  again but the best most helpful folk are always the littlest. Children imagine all the time through stories and role play and I find they are instinctively good at knowing how to help because they naturally want to. I think we sometimes lose this ability to imagine as we get older and we live in our own little bubbles. I do not think that people don't help because they are evil, people are just busy and don't see barriers that don't affect them. Therefore a lot of people walk through a door and let it shut behind them because going through a door is an easy process but it's not for me. That's the difference...

My favourite topic-Paediatric physio

Of all the therapies that I had as a kid, Physio was my least favourite. I used to go to the Bobath Centre which specialises in helping children with cerebral palsy. Because of this, my parents thought it would be the best place to go to help my body be as flexible as it could be but I hated it from a very early age because I never got on with the therapists. I despised the way that they made me feel that I was weak and that my body was wrong and needed to be fixed. For somewhere that specialised in 'treating' (I hate that word) those with cerebral palsy they never seemed to be aware of fundamental aspects of my lovely condition such as the fact that your physical state is so reflective of your emotions. My legs are jumping a lot as I write this..exhibit A.
Therapists at Bobath seemed to love expressions like "this is a naughty leg today" and "that leg isn't very straight is it?" and it was always around this point that I'd turn from being quite an easy going child into one that was completely uncooperative and stubborn. Looking back, in some ways I feel sorry for them because I'm sure I was hard work but I always wanted to fight against this perception. I've always felt quite protective of the way that my legs are because they are my radar..they encapsulate every emotion that I've ever felt and I love their uniqueness. So I wasn't going to let anyone talk about them like they were an inconvenience. Also as someone that now works with children, I know that how you phrase things plays a vital part in getting a child to cooperate especially when you're asking them to do something that they fundamentally don't want to do. For me, physios were always lacking understanding of children and what motivates children because they didn't see a child they saw an abnormality. They didn't understand that disabled children are children first and that their disability is secondary to that fact.
When I was in year 4, we had to write 3 wishes and one of mine was that physios spent a day in a wheelchair. I always wanted to give them a wider understanding of what it was like to be disabled and what growing up in a wheelchair was really like. I'm sure I conveyed this view during many a tantrum in the lovely Bobath centre...but maybe slightly more angrily.
One of my biggest issues with physio was that when I was young they put a lot of emphasis on trying to get me to take steps and walk up and down parallel bars without ever explaining to me that this wouldn't necessarily lead to me walking. In a young mind walking exercises = walking = no more wheelchair = no more disability. So when the walking exercises dwindled and it became apparent that I couldn't walk unaided I experienced quite a big comedown. I was and still am so angry that they gave me false hope, that they never thought about my feelings or emotional development.
But alas, I think I've ranted enough. Physios and I never saw eye to eye...and probably never will.

My time, your time

I've learnt over the last five years of managing P.As independently that it is important to establish boundaries and set up expectations from the beginning.  Having somebody involved in most of your daily tasks is never easy and means that I don't run on my time very often. I tend to make my needs happen when it's convenient for others as opposed to when I actually need things and I therefore have learnt to make all of my needs fit in to other people's schedules. This is unavoidable when it's your family and friends helping you because they have their own things to do and cannot be available exactly when you need them. Nevertheless for me, causes huge levels of frustration and at times becomes unbearable. Therefore when have a P.A, someone who is employed to meet my needs,  I see it as an opportunity to run on my time, which gives me so much freedom. It might sound silly but knowing that I can say to myself 'no I won't go to the toilet now but I can go in ten minutes if I want to' puts me in a completely different mind frame about my life. Therefore one of my rules for my P.As is that my time is my time and their time is their time. That means that when I go shopping, that is time for me to shop not for them too for example. I don't know a single person who wouldn't be particular about the way in which they had help if they were in my shoes. I think if the person is right for the job they will get you as a person and understand what's important to you. They will also have the imagination to think about the effects of having people involved in every decision you make and will respect the fact that you need things done a certain way. Luckily for me, I have an amazing group of P.As often referred to as 'team Greene'. I have learnt that having the right people is so so important. I never want to be in a situation where my P.As are merely people who help me physically. For me, having people who I can have banter with and build friendships with makes having to have help with personal care so much easier. Lots of my P.As have become life-long friends who I really love and as many of them will read this I have to say; thank you team greene for all that you do.

'Why do you bring that wheelie chair with you?'

Cerebral palsy comes with me everywhere, in every situation that I'm in it's present. Sometimes I barely notice but there are other occasions where I'd love to just leave it at the door, enter and just be myself. See it's very hard to show who you are as a person when your legs are constantly jumping or you try to speak and no sound is produced. At times, this is my reality and it's a bloody annoying one. The thing is in some ways I love having a condition that mirrors how I feel because my legs are my radar, my way of keeping my emotions in check but the downside is that I can't hide how I'm feeling because my body reveals all.  I know in my head that my level of spasms and stammering will fluctuate forever and I also know that there's not much I can do to prevent this. But it does make me feel like an idiot, that I just can't get my body to comply with what I want it to do. I'm let down by my body because it doesn't always let me be me. At the same time, I don't hate my body or my condition for that matter and it's not my nemesis. It can't be. I can't live my life battling with the effects of my disability nor do I want to. It's just not always a harmonious duo...