"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.