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Cerebral Palsy

Restricted Independence

Will I ever be totally independent? I’ve finished university for the summer now and I don’t go back until September- this means that I have a lot of time on hands and don’t get me wrong, I’ve spent most of my first 3 weeks off being run down. So, I’m certainly in need of a break but for someone who always likes to be busy I am scared that for the next 3 months I won’t be as busy as I want to be. This is due to having restricted independence. In my previous post about driving, I mentioned how much independence driving will give me and in this post, I’m going to explain why that independence is so important.

The whole point of this blog is to show you that having Cerebral Palsy doesn’t stop me from living my life- and it doesn’t but it does make everyday activities a lot harder! What I mean by this is that I can’t just hop on the bus to town when I feel like it, as I would need to have someone with me on the bus. Getting on the bus may seem like an easy task but when you break it down it’s actually quite complex and they’re many skills involved (I know because I had to do a group presentation on this at university). Therefore, this is not something that I am able to do independently. I still go out with my friends and socialise but if none of my friends are driving, this can cause quite a barrier! See, when I’m only going out for dinner I don’t need my wheelchair; this then causes issues because how do I get to the bus stop if I’m not using my chair? Which I know the answer seems simple just take my wheelchair but it’s not simple when you’re not used to using a wheelchair outdoors.

I’ve had an electric wheelchair 8 years now, which I know seems like a lot but when I break it down it isn’t because, for 7 of those 8 years, I just used my wheelchair indoors. It’s only since I’ve started university that I’ve been using my electric wheelchair outdoors; even still I only go around the university campus and then occasionally venture out to the nearby shops and that’s it, so my confidence is pretty low with my chair outdoors. I’m not scared but I’m still aware that I’m vulnerable! I have previously bought a new wheelchair so I do plan on getting out more over the summer- I have used it and for most of the time I was fine; I live on a hill so getting down my road is the hardest part! However, I am aware that I must work on this, and I am taking my new chair with me on my summer holiday in order to improve and build my confidence. But I’m still restricted, therefore, even though, I have the chair, it will be a lot easier to take it out when I pass my driving test and use the hoist because believe it or not my house isn’t wheelchair accessible! Which is fine because it doesn’t need to be otherwise, we would have moved; this means if my chair is in the house I can’t go out in it unless someone is around to help me get it out. I can get it out of the car now which is a lot better but, I still have the problem of the hill.

See, there’s so many factors to consider before I even leave the house- not making my life sound fun here, believe me I live a very fulfilled life! I still socialise with my friends regular but due to me finding the bus quite hard this results in us getting lifts or taxi, if they don’t drive, which works and has worked for quite some time now and I am grateful to have such understanding friends, but sometimes when I know that they’re forking out a lot more money for a taxi instead of a bus I feel a bit responsible. I also feel quite bad asking my parents to take me everywhere as I’m aware that they have lives too, this doesn’t stop me from going out, it just restricts me for example I rarely go and walk around town and not just because of the walking but, because its just such an awkward place! This also affects me when going on nights out as when I’m tired and not sober (not drunk either as previously discussed) I feel really vulnerable getting a taxi home alone. Luckily most nights out we either stay at someone’s house or I’m with my friend who lives round the corner so she always makes sure I get dropped off first but when I’m out with my friends from university, I have to get home on my own, this can be quite a stressful way to end the night because the taxi driver just assumes that I’m drunk. So, therefore this is restricting and I admit I have turned nights down with my university friends because I’m worried about getting back home alone.

I’m fortunate as I don’t feel that in my 19 years my disability has restricted me that much- I never when to the Friday night ice skating foam parties but apart from that I’ve have had a good go at doing everything else. I am also lucky to have always had amazing friends that understand that I can’t always do everything that they can do. I’ve talked about this before in the sense that it was hard when I came to and age and realised that I am restricted and I guess I worry about it now in terms of how it will affect future relationships (hopefully I’ll be driving by then). But I am only as restricted as what I allow myself to be, and as I’ve got older I have become confident and more determined to not let these restrictions take over; I am only 19 and I still have a lot more confidence and independence to gain and although I want to achieve this, this is not something that’s going to happen overnight. I am extremely happy with the life I am living and yes nothing has gotten or will ever get in my way; I’m still aware that my life would be different if my independence wasn’t as restricted.

Thank you for reading,


5 thoughts on “Restricted Independence”

  1. Two things from your blog.
    1. Pavement parking, pot holes and a lack of lowered pavements – don’t they drive you mad – they did for me
    2. As a Grandparent and obviously a parent we are still gladly and willingly looking after and helping our middle aged daughters and our seven grandchildren – currently the house is half full with them – I don’t know about your parents but our life is helping our children and their children it’s the greatest joy


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