"Do you need a licence to drive that?" Child aged 5

Soon after,  I started volunteering at my old primary school a little girl started at the school. She too has Cerebral Palsy and she came into the nursery which I was working in at the time. Once she started she was fitted for an electric wheelchair because prior to this she was pushed around in a buggy. Wheelchair Services with their excellent timing arrived half way through the end of year teddy bear's picnic which understandably was much more exciting to a four year old than trying out a wheelchair but I helped to coax her into it. As soon as she got into the chair, she started smiling as for the first time ever she had been enabled to move independently and make decisions about where she wanted to go. I was very pleased that on some level I helped ease this experience for her and for the rest of the morning we had wheelchair races as she learnt how to navigate her chair and feel in charge of her mobility level.
I'm so proud that I was there regularly as she moved through the school from nursery to year two and that to her I was a 'teacher' who sat down. It was very surreal to watch her live her childhood with a disability and how mature, perceptive and determined she was as a result. These are all qualities that my mum said I had when I was young and I watched them being played out in front of me.I saw how I could be a role model for her in a very 'unbobish' way. I always let her lead conversations about disability as I felt that there was no need to make her face it constantly. I much preferred asking her how her day was and what she had learnt in science and get to know her as a child first. I didn't want to make her perceive disability in the way that I do because she has the right to her own opinions about it (though I was stunned when she told me she really enjoyed physio).
I specifically remember when she was in year two and she whizzed up to me to tell me that she had new footplates all excitedly. It made me feel quite emotional that she had told me that because she knew I could relate to it. I often think of her now as a year five child and am saddened by all of the battles and negativity I know she is likely to encounter but I hope that as she has my level of determination and strong will that she will win through and not have to reevaluate her views of physio!

Battles and fights

Access to mainstream life for disabled people is far from easy. I know my parents have battled with negative views and bureaucratic systems for most of my childhood as they fought their way through every stage of mainstream education for me; from the infant to the junior school, from the junior to my secondary school through to a levels and access to university. As I got older I began to fight my own battles and I'm still fighting. But I was lucky, I've always had supportive parents and family who will fight as hard as they can to help me achieve but it shouldn't have had to be dependant on this fact. One of the more recent battles was with my local authority to fund full time help at uni, for which the fact that I couldn't walk and needed help with daily tasks was not considered a valid justification to needing 24 hour care. I faced questions such as "why can't you have someone come in in the morning leave you a sandwich for lunch and leave?" to which my response to my social worker  was "because I'm not a dog" which I think completely shocked her. But I'm too determined to be told what I can and can't have access to and because of this I will never give up the fight. I know that I am worth much more than the implied lifestyle that people present to me, it doesn't mean though that these opinions don't bother me cause they do but proving people wrong is so bloody satisfying! I do hope though that this dramatically improves and that disabled children do not feel as surprised as I do when people make it easy for them and naturally consider their needs. We have a long way to go.

'Bob' stories

When I was younger and would get upset about my disability, one of the most common responses was what I call the 'bob story' where people would tell me a story about someone that they knew that was 'more' disabled than I was and was making greater achievements and they would go something like this; I've got a cousin called Bob and he's paralysed from the neck down but he's climbed Mount Everest'. I always found it ironic how an able bodied person would try to inspire me by telling me a story about someone who is physically less able than I am when they can do more than bob and I combined. I also strongly believe that you cannot compare disabilities and decide which is 'worse' than another because every disability has its value in terms of creating potential barriers and affecting daily life. As a disabled person. I know that I can only feel the effects of my condition and how I often long to change these. Being told that I've got the use of my upper body and therefore 'things could be worse' provides little comfort to the fact that I cannot walk and never will. It also angers me because it completely underplays the nature of my condition and therefore that im not allowed to articulate the frustrations that I feel because I am not 'Bob'. I know however that this comment is well meant and that people find it hard to comfort an infinite problem. The older I get and the more I do with my life I fear that I am becoming a 'Bob' and whilst I am happy to be a role model to others I do not want to be the more disabled, more achieving Bob as I find that deeply irritating.


I am sometimes told that I am inspirational and that what I do is amazing. Although this is very nice to hear, I do not feel either of these things. I am a person living with a condition, but I find it hard to see how that's extraordinary. But people tell me 'but you cope so well' and maybe that's the perception that I give people, that I'm coping but I do not always feel that I cope particularly well and that refers to my thoughts about the notion of acceptance. That its more of a continuum of emotions than a definite state of mind.

I see little point in moaning and that's not just in regards to my disability. Although sometimes I feel that people would be more inclined to understand what it's like for me if I shouted a little louder about it but that is not the way that I am. I have lived within a mainstream world all my life and although aspects of that have been very positive it has caused me to play down my disability. I found it very hard to associate myself with other disabled people and knew that if I discussed it with my able bodied friends I would make them feel awkward. So I ignored it and ignored it until I couldn't any more. I did not know where I fitted in for a long time because I was the only disabled child in both my primary and secondary school so knew that I was different but then I would go to groups for disabled children where it was often children with learning difficulties and me so I didn't fit there either.  I feel that if I had met other physically disabled children in my world; at school, at drama club then maybe this would be different but so often anyone with a disability is lumped together in the same category and in my opinion this is so so ignorant.

My weird and wonderful pas

When I came to university I started to have full time help. This was a huge adjustment for me. Even though I'd had P.As at home before this, it was very different because I was at home and didn't have to manage it all by myself. I often resent how much time it takes to organise rotas, sort out payroll and manage 5 or 6 people. It is not something that anyone wants to have. It has however given me lots of freedom that I didn't have before. I have always made it a priority that my pas know that I want people who will respect and carry out my choices free of judgement and that this is central to the way that I have my help. I don't think many people understand how it feels to not have complete control over your adult life and to have other people involved in your personal care and other daily tasks. I know from experience that the way that my support is carried out majorly influences how I feel about having it. I am and have been incredibly lucky with the P.As that I've had and currently have and I am very grateful for that. They are some of my closest friends and I have met so many lovely people through this role and I hope they know how much I appreciate them. It's just that no one wants a stranger to give them a shower and whenever I have a change in PAs this is my reality.

"You're going to teach in that....won't that be annoying?'' Child aged 7

The concept of acceptance has always been something that I struggle with. When I was younger I felt very pressured to 'accept' my situation as if living with a long term condition after twelve years should be long enough to have felt, processed and reflected on every single emotion I could possibly feel. I now realise that it takes a long time to process and that especially when these feelings are combined with teenage hormones that this is not always easy. It would be fair to say that I suffered from depression when I was a teenager and that I wished that I could get over my issues with my disability or have problems that I could solve but because I couldn't they just went round and round in my head and my only choice was to feel it or completely ignore it.


I think acceptance is such a definitive term  and I've often felt that to accept my situation would mean ignoring how it affects me. I believe that I will always have issues with my disability not because 'I'm in denial' but just because it shapes my day to day life enourmously and there are times when I just feel 'how can this be okay with me?' and 'how can this be my normal?'. Although I doubt that this feeling will ever go away, I do feel more at peace with my condition and the way I am than I ever have before. This was compounded when I watched the Paralympics and for the first time in my life I felt a sense of pride in being disabled that I've never felt before as finally I saw a very positive representation of disabled people. I hope that these games leave a positive legacy and are the springboard that we needed to improve people's attitudes towards disability.

"I suppose you don't know any different?"

One of my biggest bug bears is this comment. It is as if I can't have any emotions towards not walking because I have never physically done it and therefore how can I feel anything towards it. I am always amazed at the lack of thought in this remark. It is almost as if I do not have the right to be frustrated by my disability because I have never walked so how can I miss it or have any negative thoughts towards it.
I was born into a world that wasn't made for me and are reminded of this constantly. I am sure that even when I was very young, I always knew that not walking was not the norm and that my situation was different. I went to mainstream schools where all my friends could run around, do the monkey bars and climb stairs. Therefore I was very aware that I was different though I may not have been able to verbalise how it made me feel. I think it's incredibly naive of adults to assume that disabled children and people are oblivious to their situation. After all, many people would find it unacceptable to assume that if you have always struggled with money you cant possibly feel that having more would ease your financial situation and that 'you don't know any different'

One of my favourite comments from a child this summer occurred whilst working at a playscheme. It was a horrible wet day and all of the  children had managed to escape the rain by using the stairs inside the building but I had to go around the outside and as a result got rather wet. When I came inside, a child saw me and when she noticed that I was soaked, she said 'it's not very lucky being in that is it because you can't use the stairs so you get wet'  so I said 'yeah that's true' and then she said 'but do you know what is lucky? You get to use the ramps!' this comment made me smile for days afterwards as it is this acute awareness of disability that is so lovely to see developing in children. It is also one that I find adults rarely have.

Adult reactions are often so extreme. Either I'm presented as some kind of heroic creature or people feel they can ask me really personal questions any time they choose. Whilst I accept that many people have not come across disabilities, are scared to offend me or want to show genuine admiration, there is a level of ignorance that I face more and more in my adult life which is hard for me to be sympathetic towards. I don't think people realise when they say one little comment that the words they use have any long - lasting effect on me but they do.  For example, 'if you can get a job, I definitely can' a well meaning comment I know but not the best choice of words.

I have very vivid memories of 20 trainee physios watching me when I was 6, taking notes on how my body worked or more importantly how it didn't work in their eyes. I felt like an animal in a zoo being watched. I don't feel this is something any child should have to go through.

I had a very happy childhood but it was always dominated by appointments, therapies and interventions which looked at seperate aspects of my condition. This meant that as a child, I wasn't ever looked at holistically, services never came together to put together a provision plan and I really hated this. I would often get jealous of my friends that had playdates and watched T.V after school whilst I attended hydrotherapy, physio and horse-riding. Having a disability robbed me of a lot of childhood freedom and made me grow up very fast.

I hated physio when I was a child partly because of the experiences I had with trainee physios which left me feeling completely violated, partly because I knew that I couldn't change how they spoke to me or how inadequate it made me feel but mostly because I was never treated as a child with thoughts, feelings and a personality. I was just a body that needed fixing because it didn't work properly.

I would often hear 'well, this leg is very bad today isn't it?' and 'why are your arms so weak?' and get immediately defensive because I hated being treated like something that was broken instead of a child with a condition. These experiences did not make me the most co-operative child or the easiest to give physio too I'm sure! But I wanted to be recognised in terms of what I could do- to have an active role in physio. I always wished they would tell me the point of the exercise that I was doing or made it relevant to my life as after all that's how we, as trainee teachers, are told to teach P.E. and I don't see why it should be so different for disabled children.

I firmly believe that disabled people should be allowed to be the masters of their condition and that they should play a part in deciding how to get the most out of their lives by maintaining their conditions. Nobody ever asked me how it felt to have Cerebral Palsy or what skills I would like to have developed for increased independence. Nor did they make physio playful. This, I believe is a fundamental mistake.

One of my proudest moments was defying a physio to not use a hoist to get into a canoe and then happily using my arms to lower myself in. I have never used a hoist in my life and am able to transfer myself easily. So, thank you to all my childhood physio's that made me very determined to be as independent as possible (and a little defiant).

'What's it like to have a disability? Is it hard?'

My reaction to this question always makes me wants to be sarcastic and say 'no, its really fun. I love it, you should try' but I know people are very curious and interested to find out so here are some of my thoughts:

I spent many of my teenage years finding it hard to process, wondering how can I live like this? Who would I be without my disability? and often getting upset and having very raw emotions about wishing I could walk. Its extremely difficult having problems that noone can solve and having to feel things that noone can stop you feeling. It's difficult not being fully independent like my friends are and not having total control over my life. Feeling all of these things whilst going through puberty and teenage hormones was definitely not easy but I have always been very determined to do what I wanted to do with my life and reach my potential. I have never allowed people to place their expectations on me or affect my choices. I can remember going to a university open day and the disability adviser saying to me 'you know, teaching is a very intensive course are you sure you can cope' and even though that comment affected my choice of university it didn't in any way stop me from doing my chosen degree.

When I went to university and started having full-time help I experienced a new found freedom. I moved to a fully accessible ground floor flat was living out of my family home and I discovered that I could do more for myself than I ever  thought was possible. I could choose the help that I wanted which meant that I gained autonomy over my life and it changed the perameters of what I thought I was able to do for myself.

Since turning 21, I feel a lot more comfortable with my disability than I ever have before and that although it will always make life harder and create frustrations,I have realised that having Cerebral Palsy makes me who I am and that because of that I wouldn't swap it for the world. It has kept me humble, given me resillence and put my stubbornness to good use!

   

I have always found children's reactions to my disability refreshing. They are completely honest about their thoughts and yet have an innocence that adults do not have. I am training to be a primary school teacher, I also have Cerebral Palsy and children are always curious about my chair asking 'why are you in that?' and often finding it mad when I say I can't walk. 'Have you tried?' some will say, 'are you allergic to walking?' was one of the most memorable reactions and 'but you have shoes on' was another which inspired the title of this blog.

For years I have wanted to write about my thoughts, reflections and experiences of growing up with Cerebral Palsy and I'm excited to share them. It has taken a long time to feel confident to let people into this area of my life but I hope that people can gain an understanding of the lives of disabled people through reading my blog.

For as long as I can remember I have wanted to teach, when I was little I would play lots of teaching games with my beanie babies and even had a register for them and I have always enjoyed being with young children and seeing their development. I often wonder how much of my disability has influenced my choice of career and whether the skills needed for this job have all been developed through my disability. I feel that it has, to some extent, and this is probably one of the most positive things about being disabled as when I teach and work with children it feels like I can use it to my advantage.