I’ve had a few people ask me to share my experience learning to drive with cerebral palsy as they find it very useful and insightful. I think if I’d read a blog post about someone’s driving experience when I was 15, I would be a lot further in this journey. So put your seat belt on, because this is quite a story!
When I started to plan for college at 16, I realized what I’d always known was about to change. My timetable wasn’t 8:30 a.m. to 3:00 p.m. every day, so my parents could no longer drop me off and pick me up. This meant I would be getting a lot more taxis, and the thought of being in a taxi alone made me feel vulnerable. But I thought I’ll start driving lessons soon, and then in the second year I’ll be able to drive. Six months before my 17th birthday I applied for my provisional license. My 16-year-old-self thought it would be enough time to get the ball rolling, not knowing what was ahead.
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, I got my provisional license three months later. The process itself took a lot longer than I anticipated. As soon as my provisional license came, we started looking for a disabled driving instructor, knowing I’d probably need a little extra support. After another few months of phone calls, I finally had my first driving lesson two days after my 17th birthday. I didn’t know when you’re disabled you can start lessons at 16, but I didn’t mind getting started a little late as I was at the same place as my peers, and I was where I wanted to be.
My first lesson was meant to be two hours, but after an hour I was on my way back home as we discovered I needed further adaptions. The next stage was to go to a center to be assessed. It took five months to get an appointment, but I didn’t mind because I could start over summer when I wasn’t at college, meaning I could have more lessons and speed up the process.
The day finally arrived. I was going to the assessment center and I thought I could see light at the end of the tunnel. It was a long day; the tests included trying different adaptations as well as having reading and cognitive tests. You name it, I had it. It was quite a draining day, so I slept most of the journey home. The occupational therapist concluded I was too weak in my legs to be able to use the brake and accelerator, so we explored alternative options, one of them being a lighter steering wheel which had the brake and accelerator attached. We discovered I couldn’t use my legs and that I was cognitively able to drive, but we didn’t have a way for me to drive. I came out of the assessment feeling deflated as this was the first time I’d realized I may never be able to drive.
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 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 I was able to use — a tiller which works a bit like the handlebars on a bike.
After we decided the tiller was the adaptation for me, it meant more waiting. This was because at the time, there were only two vans in the country fitted with this adaptation for student drivers. I would have to have my own vehicle adapted before I learned how to drive, which resulted in more assessments to ensure this was the right adaptation.
Another six months went by, filled with a load more phone calls, emails and letters. The guy that came was lovely. He walked in and straight away said, “You’re going to get this adaptation. Our number one priority is to get you driving.” I was relieved I hadn’t waited another six months to get rejected. Just an update for those not counting, the total I’d been waiting at this stage from applying for my provisional license was 18 months. Now it was time to hunt for cars — exciting, although my options were quite limited. 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.
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, but the company was having trouble getting hold of the car. At this point I was thinking I’ll just have to wait until I turn 25 before I can drive. Fast forward four months, we finally had a car and the adaptation process could begin! 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 four months on!
During this time, I decided that it was time to learn the rules of the road. I was eager to start driving lessons, but there was nothing I could do apart from wait — I’d played my part at this stage.
It’s now 34 months later, I finally have my car and have started my driving lessons. My life is always going to be full of unexpected battles — it’s just part of CP — but even though it’s frustrating, it only makes the result more worthwhile. After all this waiting, I’d be lying if I said 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 to go places alone in my chair. It will be worth it in the end, but at least now 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, especially my parents for literally spending days on the phone. If it wasn’t for their hard work, I wouldn’t be at this stage!