When I turned 17 I naively assumed that learning to drive would be the same experience for me as it was for all of my school friends – an opportunity to have some long-sought-after freedom! However, I’m disabled so, of course, things are never quite as straightforward as they are for able-bodied people, but I was up for the challenge.
The first stage was attending a driving assessment. The day was kind of liberating as I got to play around in a car for the first time, and it felt like an assault course as I carefully steered the vehicle between traffic cones. However, the fun and games ended when the assessors informed me that I would have to learn to drive in a specially adapted automatic car, which would enable me to drive with just one arm. Following this, I didn’t even consider beginning driving lessons until I had finished sixth form and started my Art Foundation course. My mum and I found out about a BSM driving instructor called Mary, she had an automatic car with tons of different adaptations, and booked me in for some lessons. Mary, along with the driving assessors, decided that I would require a steering ball, a quick release handbrake and also a tiny adaptation that enabled me to use the wipers with my left hand (leaving my big arm to the steering duties).
I don’t think I ever anticipated just how painful the lessons would be. For me, driving with one arm, coupled with the muscular imbalance in my back, somehow forced me to sit heavily on one hip, causing excruciating after effects. Following each lesson, I’d stagger back up my driveway into the house, pop an opium-based painkiller and collapse on the sofa, waiting for the drug to start working. Of course this wasn’t an ideal scenario – particularly because the painkillers I was taking caused me to feel mega emotional and needy, they stopped the pain though so that’s one bonus.
Anyway, I carried on with my lessons and they were fine (except for almost colliding with a bus on a mini roundabout) and then it all went a bit haywire. I’d always felt dizzy during my lessons, but I just didn’t think anything of it – I don’t go a day without having some kind of new pain or weird symptom, so I ignored it. However, I was almost ready to take my driving test when I was diagnosed with having Atrial Flutter (basically, an incredibly fast heart rate 24/7), but I was still determined to pass before starting at Loughborough University a couple of months later. My driving test was booked for the summer 2009, and I felt ready – more than ready, I’d been learning for almost a year! But then, during a weekend away in London my handbag was stolen, containing my provisional driving license, a few days before my test. Seriously! Someone or something was conspiring against me!
To cut a long story short, my test had to be cancelled. I had my heart surgery a few weeks later and then went off to university shortly after that (looking back, god knows how I did it!) My driving test was then rebooked for a few months later but due to adverse weather (bloody snow) it was cancelled again! Third time lucky, my final test was coincidentally arranged for a week or two before I was scheduled in for another heart operation. Luckily, I passed – first time! Best.feeling.ever.
Yeah, not all stories end with a happily ever after.
According to the government, and the DLA (Disability Living Allowance) assessors, I am quite simply not disabled enough to require the mobility component of DLA which would enable me to be in receipt of a Motability car. This seems shocking, right? Who gets told it would be illegal if they drive a manual vehicle without adaptations, as well as needing two heart operations and is heavily reliant on strong painkiller, yet isn’t eligible for a Motability car?
My parents both drove manuals, and were just not willing to swap to an automatic with adaptations – this decision left me so angry for years, especially because I’d seen my sister pass a driving test and instantly have use of either my mum’s car or her own Peugeot. I think this feeling of exclusion left me more angry and depressed than actually not owning a car. These emotions made me analyse my disability even more, and somehow forced me to see myself in a more negative light – because I no longer felt equal with my sister or peers. I couldn’t help thinking that if I’d been born ‘normal’ I wouldn’t be going through this. I know one thing for sure, if I have children with my disability (which is 50% likely) I will do everything possible to prevent them experiencing this same feeling. But, in all fairness, my mum and dad just couldn’t afford to buy me the kind of car that I require.
Whilst at university, everyone reckons you don’t really need a car – except for making hungover trips to McDonalds. However, for me, a disabled student, it would have helped a great deal – carrying shopping basically destroyed my arms, and I really struggled with collecting piles of books from the library that were needed for my essays so I ordered them off the internet instead. I also had to visit a GP surgery the other side of the town in order to receive warfarin treatment. Anyway, I coped and got by, but why should I have had to – when exactly does the situation become severe enough that you are granted a Motability car?
After graduating I moved back home and my mum had to become my personal taxi service. I was grateful, don’t get me wrong, but this was coupled with anger, as I felt so frustrated and trapped by my disability. Shortly following this I was assessed for PIP (Personal Independence Payment), which is replacing DLA – and for me, it worked out moderately well. I scored highly on the personal care side of things, but relatively low on the mobility component. So, on the plus side, I found myself having more money for my £40 a week private chiropractic treatment, but I was still no closer to funding my special car.
A few years later, things started to pick up – I don’t know why but by absolute chance I started looking at cars. I’d always dreamt of having a Fiat 500, they are beautiful, and as my Uncle used to be a Fiat employee he gets discount off all new cars, so that has always been in the back on my mind. Anyway, my local Fiat supplier didn’t have any automatic Fiat 500s in stock – he said they rarely do get automatics, especially not cheaper, second hand models! However, they did have a brand new automatic Panda in the showroom, and he invited us along for a test drive.
This whole scenario started off with my dad planning for us to trade in my mum’s manual car for a new automatic, which I, of course, would be able to drive. Naturally, mum wasn’t keen. At all. But for once, I just did not care – test driving that car was one of the best feelings ever – for the first time I felt equal with every other 25 year old, and almost ‘normal’ as I whizzed around the car park. I even found the Panda more suitable for me than a 500, as the unique design of the handbrake meant that I didn’t even require the quick release adaptation.
So, weirdly, after years of anger and fighting, it all went through and we purchased the new car, which would have both my mum and I on the insurance. Needless to say, I loved it and literally felt over the moon, but my mum wasn’t so keen. After years of driving a trusty manual she just couldn’t get used to this automatic, and after a few weeks she chose to buy back her own car. Mum also said she felt it was time I had my own car, even though my dad hadn’t anticipated that my very first car would be brand new!
In order to afford my specially adapted car I was advised to contact local charities, and I am so grateful for the financial help that I received – it really does mean more to me than just being ‘a car’. The freedom is incredible, I can’t do petrol at all without a helper, but that’s okay – it’s a small price to pay! Perhaps some stories do have a happy ever after ending, but it doesn’t mean it’s been an easy ride. For me, I’m still fighting, I currently can’t drive as I’ve seriously injured my right shoulder blade and seeing as I can never really rest my dominant arm, driving is one thing I know I can manage without doing for a few weeks.
Unfortunately, I probably won’t ever be deemed eligible for Motability, but I’m so grateful that I finally have my own version of it.