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,


My Driving Journey So Far

Welcome to my driving blog post, despite saying that I wasn’t going to write this post, 2 weeks later here I am… I’ve received a few comments saying that people would like to read this blog post as they find it very useful and insightful. Which made me think that, if I’d had read a blog post about someone’s driving experience when I was 15 then I would be a lot further in this journey. So, here it goes, put your seat belt on (pun intended) because this is quite a story!

When I started to plan for college at 16, I realised that what I’d always known was about to change, because my timetable wasn’t 8:30 am-3:00 pm every day so, therefore, my parents could no longer drop me off and pick me up. This meant that I would be getting a lot more taxis and at this time the thought of being in a taxi alone made me feel vulnerable. But then I had a thought, I thought I’ll start driving lessons soon and then in the second year I’ll be able to drive, which of course made me eager to start driving. So, 6 months before my 17th birthday I applied for my provisional license, my 16-year-old-self thought that it would be enough time to get the ball rolling, not knowing what was ahead.

The first hurdle- as previously discussed as a result of my Cerebral Palsy I have epilepsy, which didn’t make getting my provisional license easy, despite not having a seizure in 12 years. But, after filling out multiple forms, 3 months later my provisional license came. This process itself took a lot longer than anticipated and started to make me realise that this course was going to be more complex than expected but, it didn’t fully prepare me. As soon as my provisional license came, we started looking for a disabled driving instructor knowing that I’d probably need a little extra support. So, after another few months of phone calls, I finally had my first driving lesson 2 days after my 17th birthday. Again, we didn’t think it would take another 3 months on top of this, and had hoped that I would have had a few lessons by this point as with being disabled you can start at 16, (clearly something I didn’t know). But I didn’t mind, it felt right as I was starting around the same time as my peers and I was where I wanted to be.

My first lesson was meant to be 2 hours but after an hour I was on my way back home as we discovered that I needed further adaptions. The next stage was to go to a centre to be assessed so, my report came through from my driving lesson and a date was made to go to the assessment centre. I was waiting to go to the assessment centre for 5 months’, but I didn’t mind because this was over summer so, I could start over summer when I wasn’t at college meaning that I could have more lessons and speed up the process. Over this period, I was told to start revising for my theory test so I did, luckily I didn’t book anything before knowing the outcome of the assessment but I thought that if I was being told to put in for my theory then it couldn’t be much of a wait.

The day had finally arrived, I was going to the assessment centre and I thought that I could see light at the end of the tunnel. The day was a very long day, the assessment centre was quite a drive away as well but, I was prepared for a long day! So, the tests included trying different adaptations as well as having reading and cognitive test you name it, I had it, and as you can tell, it was quite a draining day so I slept most of the journey home. We’d concluded that I was too weak in my legs to be able to use the break and accelerator, so we explored alternative options one of them being a lighter steering wheel which had the break and accelerator attached to the wheel. So, this assessment was useful because from this we discovered that I couldn’t use my legs and that I was cognitively able to drive; we’d not found a way for me to drive. I came out of the assessment feeling deflated as this was the first time that I’d realised that I may never be able to drive. Side note, this assessment was carried out by an occupational therapist- just thought I’d mention it!

From this, I was then referred to have another assessment with a driving instructor, the wait for this assessment was only a month and during that time I was all ready to go on holiday and just forget about driving. Once again, the day came, but this time I wasn’t that excited as I didn’t want to get my hopes up for them to be demolished again. However, this assessment turned out to be the best one as we managed to find an adaptation that I was able to use- a year later and things were finally looking up. The adaptation I found was the tiller which, works a bit like the handlebars on a bike.

I was going to insert a video but the video I have is me using a different adaptation- I tried so many!

So, it was decided that the tiller would be the adaptation I was using! However, this meant more waiting! This was because at the time there was only 2 van’s in the country fitted with this adaptation for learner drivers, therefore, this meant that if I was to have this adaptation I would have to have my own vehicle adapted first before I learnt how to drive. Which resulted in more assessments to ensure that this was the right adaptation.

With a load more of phone calls, emails and letters another 6 months went by. The guy that came was lovely and he walked in and straight away said ”You’re going to get this adaptation, our number one priority is to get you driving.” – relief, I’d not waited another 6 months to get rejected. Just an update for those not counting, the total I’ve been waiting at this stage from applying for my provisional license is now 18 months. Now, it was time to hunt for cars, quite exciting, although my options were quite limited- this is because I needed a car big enough for a hoist for my electric wheelchair, however, a lot of the bigger cars require someone over 25 to drive them so, I had very few options.

A few months went by, and we’d picked a car and got the ball rolling, little did we know that our plans were about to get knocked back again… The plan was to get the car and then send it away for it to be adapted with the tiller; that plan didn’t take off as quickly as expected as the company were having trouble getting hold of the car so we had to wait until they could get hold of the car because as mentioned all the other suitable cars required the driver to be over 25. So, at this point I’m thinking I’ll just have to wait until I turn 25 before I can drive, thinking that, that was my only option. Fast forward 4 months and we finally have a car and the adaptation process begins! At this point, I was going back a forth a bit to have fittings. Once again, the car took a lot longer to be adapted than we thought, but it had to be perfect even if that put another 4 months on!

During this time, I decided that it was time to do my theory- good job I didn’t do it 2 years ago when I got told to! So now that my theory was done, I was just eager to start driving lessons, but there was nothing I could do apart from wait – I’d played my part at this stage.

We are now up to date 34 months later! I finally have my car and have started my driving lessons! This unexpected battle (which is the phrase that I often use) has taught me a lot and even though I’ve spent the majority of these 3 years being very stressed and frustrated with the process this has been a massive learning kerb. My life is always going to be full of unexpected battles it’s just part of CP, and even though this is frustrating it only makes the result more worthwhile. After all this waiting I’d be lying if I said I that I don’t want it to all be over and to pass my test. But doesn’t everyone? Driving will be great for me as it’ll give me much more independence as it doesn’t just allow me to go to place’s, but it allows to go to places alone because then I can go in my chair! So, it will be worth it, in the end, but at least now I can wholeheartedly say that I can see the light at the end of the tunnel!

There have been so many people involved in this journey that I would like to thank! I would also like to thank my parents for literally spending days on the phone because if it wasn’t for their hard work I wouldn’t be at this stage!

I’ve previously discovered that you can apply for your provisional license from the age of 15 and 9 months so if you’re coming up for this age get applying! I wish I’d have known that!

Thank you for reading,