'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.