You know you're a P.A. when....

So I recently asked the lovely team Greene to help me compile a list of the funniest/quirky aspects involved in being a PA. Here is the list that we came up with...

You know you're a PA when....
1) You guide a little finger into a nail dryer.
2) You become used to having wet socks/tights after helping someone have a shower.
3) You start to really hate bus drivers after hearing 'sorry you can't get on, there's already a buggy on the bus'.
4) You go to Costa and ask for a cup of tea to eat in, in a take away cup that's not too full up and totally confuse the staff.
5) You feel like Gok Wan after getting an approving nod from an outfit that you've pieced together.
6) You check the disabled loos for the appropriate bars even when you're not with a disabled person.
7) Seeing a tennis ball in bed (to relieve back pain) becomes completely normal.
8) You check every place you walk into for a step.
9) You cannot explain what your job involves because people think PAs work in offices and the term 'carer' offends you.
10) You carry a bizillion bags regularly.
11) You develop methods to avoid inducing spasms like clapping loudly or whacking your thighs when you enter a room.
12) You can't stand lumps in the duvet so take at least 10 minutes trying to flatten said duvet after you've made the bed.
13) You become used to staring at the ceiling in a shop so that the staff will direct their questions towards the person in the wheelchair.
14) You're fed up of hearing 'that must be so rewarding'.

"Are your knees just really excited?" Child aged 4

I think I now factor the effects of Cerebral Palsy into my life much more than I ever have. One of the downsides of mainstream schooling for me was that I learnt to ignore my body to fit in. As a consequence, I spent the majority of my teens making myself look and feel as "normal" as possible so I ignored the back pain from sitting for hours, my added fatigue and would rarely utter a word to the outside world about my frustrations. But you can't do this forever...

I've always always wanted to teach and I put a lot of dogged determination into making this dream a reality but I didn't really think about how working life would work for me. I didn't want to consider that being disabled would affect my ability to work.  I just wanted to do it, to be a class teacher and help children learn. It was only during my dreadful third year placement that I realised that some employers would only see a wheelchair and judge accordingly. I also realised how gruelling a teacher's life can be and that working 60 hours a week would and did take its toll. So I left university with very little confidence about obtaining and maintaining a teaching job.

I started volunteering in local schools part-time the year that I finished my degree and I noticed that part-time hours were agreeing with my body and therefore my body was agreeing with me more than it did when I was studying and would push myself beyond my limits. I came to the conclusion that I was very glad that I'd pushed myself through school and during my degree but that this was now adult life and I couldn't keep ignoring what my body needed.

The decision to work part-time didn't come easily to me, it meant I had to bid farewell to the idea of being a class teacher and had to give in to the fact that I don't have an able-bodied body nor do I have the stamina of an able-bodied person. That's hard when you're so used to fighting and proving yourself in a mainstream world but I knew I was making the right choice. I needed to protect the longevity of my health and I didn't want to burn out two years down the line. I also wanted to work independently but my independence level comes at a price. It means increased muscle pain and tiredness but it's important to me so I do it. Working part-time means that I can be independent at work in the mornings but come home at lunchtime and give myself the support and rest that I need in the afternoons. I still have times when I feel sad about not teaching full-time, but  I know that I'm still teaching and working with children. I know that I'm making my legs happy and I know that this way I have enough energy to see my friends and have a social life. It's the right balance for me.

My journey as a writer

Writing has always been a bit of a battle for me. Without the full range of movement in my  shoulders plus the added strain put upon my arms through transferring and weight bearing, it was inevitable that writing would be an issue. It was clear from an early age that the more I wrote the more illegible my handwriting became so it was something that my 1:1 support worker at primary school used to help me with if I got too tired or had to write for a sustained period. I also tried out a range of assistive technology like having a computer so I could type my school work instead of writing it but it was the same issue. Typing requires use of the same muscles in ones shoulder as writing so alas I'd get tired and my arm would get sore. I also trialled voice activated software so that I could dictate what I wanted to write and the computer would transform my sentence into print. Sadly, this type of software in the early 2000's required very clear speech in order to accurately type out what was being said and stammering meant that I would say "I went to the park" and see "when I went to San Francisco..." Not the most useful...
When I went to secondary school I wrote for myself initially in every lesson, without support and I was quite happy doing it. It meant that in my preteen years I could appear more 'normal' and independent which I was relieved about. But then the dreaded GCSE years came, I had a bigger workload and different stresses and I had to face up to the fact that I couldn't keep up with the writing. Unlike when I was younger and it would just become less legible I was actually reaching points where I couldn't physically write sod all. I told my mum and she arranged for the O.T to come out and assess my writing abilities so that provisions could be put in place for my exams. The O.T came in and asked me to write the sentence "the quick brown fox jumps over the lazy dog" over and over for three minutes. I couldn't even write it once. Very demoralising for this to be your reality at 15 but there it was staring me in the face. I couldn't write a sentence yet had so much to say. It was decided that I would dictate my GCSE exams and have them scribed for me. Dictation is not an easy or natural process but it's a skill that I developed for my GCSEs and A-levels as I wrote essays by saying 3 words at a time and giving the scribe time to write it. It's not a route that anyone chooses to write about King Lear, Feminism and Freud through but it was the only way. I found this process long, drawn out and very tiring, I found it hard to keep track of what I wanted to write with the constant need to stop and wait for it to be written but I made my own notes which helped. I also realised through dictation that I think through my pen ie when I write ideas come to me but as I dictated it was harder to allow thoughts to flow. It made me learn the art of being clear and concise as it's very hard to ramble 3 words at a time. I think I took to this aspect easily partly because stammering prohibits your ability to waffle so getting to the point was something that came easily.
Luckily, I chose a degree that included two exams in the whole three years so I only had to dictate under pressure and timed conditions twice. However we had a lot of coursework and essays that I dictated to my note taker which though were written in a more relaxed set up, brought up similar frustrations.
When I look at all that I've achieved, I feel proud of the fact that I did it through dictation, scribes and additional arrangements for exams. I'm also proud that I proved myself in spite of all those that doubted me and my intelligence level. I don't think people know how much you are subject to people thinking that your mental age is that of an 18 month old when you have a disability and that this perception is exacerbated when you stammer and even more so when they can't read what you've written. I've fought against this my whole life. My degree means so much to me because that was the proof to the world and to myself that I could do it, I could achieve. I can unlock my thoughts and express myself, it's just a matter of finding a way.

"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.