"I'm normal at St Gideon's"

I avoided watching last weeks episode of Call the Midwife as I knew that it was about a lady with Down's syndrome becoming pregnant and was not sure if I could handle hearing the attitudes towards disability from the 1950s played out in front of me without getting upset. My avoidance lasted all of five days before curiosity got the better of me and I found myself watching the episode on Iplayer. You see, as much as I struggle to be faced with topics that are close to home, I also do not like being beaten by my emotions and I wanted to see how it was presented. In order to convince myself to watch it I remember thinking as it's about Down's syndrome it shouldn't be that hard for me to watch but then five minutes into the episode I saw Jacob and within seconds knew that he had Cerebral Palsy (I can spot the signs quite quickly) and therefore my previous thoughts weren't quite as true as I'd hoped.
 I can't deny that I found some parts very hard to watch particularly the scene with Jacob on the bus where he was not understood due to his speech impairment and the scene where he was given a cup of tea in a cup that he was unable to use. I have been in very similar situations myself and therefore I identify with them completely.  It was painful to revisit these experiences through the portrayal of this character and yet in a way I was happy that this was being represented on T.V.
 I guess I just don't know how to react to seeing other people with Cerebral Palsy or how I'm supposed to feel when I do, because although I do identify with it I'm used to living in a very able bodied world and do not know how to process this sudden immersion into the world of Cerebral Palsy. I'd love to feel comfortable going between the two but I struggle to know where I belong. In the able bodied world in which my friends and family are a part of but where I have to minimise my disabled self or the world of Cerebral Palsy that would provide me with a wealth of shared experience that I would love to have but where I fear my condition would become a defining feature of who I am seen to be. But then, is that really so bad?

The curse of planning, planning and more planning

Everything becomes a process when you are disabled. I quite often forget that I plan every movement in my day in a lot more detail than most people and that I schedule my needs for when they best fit other peoples timetables. I don't always think about the fact that this is not a normal way to go about your day but when I'm faced with the reality of the fact that I have adapted to my situation it is very painful. I am very good at planning and organising but this is mostly because I cannot afford not to be. I cannot simply get a drink when I am thirsty or go to the loo when I need it because I can't do these things by myself. I often feel like I live on other peoples time and therefore when I can get help I plan for all of my needs to be met within that time because there may not be another opportunity. I live with an enormous amount of fear that I will be in situations where I cannot get my needs met as I know that this is a vulnerability that I have. I, like anyone, feel a need for spontaneity but this is hard to achieve when your life is divided into P.A shifts. I always feel like I cannot undo my mistakes. By that I mean that if I leave my shoes in the middle of the floor I can't pick them up later. This is incredibly limiting.  I do not have the reassurance that self-reliant people have. I really crave to know what that must be like.

"I opened the door for the lady with blue eyes" Child aged 6

This was a beautiful moment last term, partly because the child opened the door for me without being asked to do so, which I always find touching, but then this is how she retold the event to her teacher. My first reaction was 'aww it's nice that she didn't 'see' the wheelchair' however the more I think about it the more guilty I feel for thinking that. You see I have to be careful because encouraging people to not 'see' the wheelchair has lead to several insensitive disability related jokes being made in front of me because people do not see me as a disabled person (whatever that means). So, on reflection, I realise that what I really felt was that it was nice that she saw that as a disabled person I would benefit from help with doors but that she also saw my blue eyes and decided that this feature was more important than my wheelchair when describing me. This to me, is a perfect balance between being thoughtful and yet not making disability define me. A skill that children seem to be good at mastering...