Transportation Trauma: Why My Cerebral Palsy Makes Me a Disaster Behind the Wheel




 At sixteen years old, I never doubted that I’d be able to drive safely and independently. I could picture it so clearly in my head. I saw myself cruising into the back parking lot of my high school and popping up my VIP pass- soaking up my handicap parking privileges before rollin’ into first period. I thought of all the Starbucks trips I’d freely make after school, fantasized about having the freedom to get a manicure or take a trip to the mall whenever I wanted. Determined, I set out to get my driver’s license on time, alongside the rest of the sophomore class. A little CP never stopped me, right?

Well…. wrong.

I should start out by saying that my parents are awesome. They’ve always supported me no matter how crazy, scary, or unrealistic my dreams are. If I told them I wanted to be the first disabled astronaut, they’d help build me a rocket and send me to the moon. So we set out to make this driving dream a reality.

Having grown up with tons of friends with various physical disabilities, I was no stranger to vehicle adaptations. I knew there was no way I could trust my feet to operate the pedals (or even reach the pedals, if we’re being honest). With that in mind, my parents helped me to get a car outfitted with hand controls – an attachment to the pedals that allows the driver to both gas and break using one hand. With this relatively minimal adaptation, I thought I’d be good to go – but there were many bumps in the road I didn’t anticipate.

I started with the first step for all new drivers, the written permit test. I’m great at studying and a fairly competent test taker, so I passed with flying colors on the first try. Easy. If I thought hard enough about it, I could probably still spout off all the rules of the road. With my paper permit and cringe worthy photo in hand, I set out with my Dad as my copilot on our first adventure- the school parking lot.

The first obstacle was easy. I always say I’d be a great driver if it weren’t for all the other people on the road. Ironically, physical control of the car wasn’t really an issue at all. I could easily use the hand controls for gas and breaking, and had a good grasp of the steering wheel. As it turns out though, physical control of the car is only a very small portion of driving.

 On a busy California freeway, it’s imperative to be able to take in the position and speeds of other cars and react accordingly. You have to turn and accelerate simultaneously, all while keeping in mind your lane position and the position of other cars. To top it off, you also have to remember where you’re going. Driving was the first time I had to employ all of those skills at once, so it was the first time any of us could have known just how impaired my spatial awareness and reaction times are. It was one of the first times I remember being acutely aware of my neurological deficits – realizing that unlike my friends who are amputees or have spinal cord injuries, Cerebral Palsy is rooted in the brain, and causes issues far beyond mobility.

Though my driving lessons were still far from successful, I persevered. For two years. In the eyes of a high school student, a driver’s license is the holy grail of independence, a passport to adulthood and autonomy. Not having the ability to drive also meant something bigger and darker for me. If I couldn’t reach this teenage milestone, it was concrete proof of my disability. Something CP held me back from. Something that made me different. I was determined to succeed.

On a sunny March afternoon in 2011, I took my behind the wheel driving test for the second time. To my surprise, and the surprise of the instructor, I passed! What I expected to be cause for great celebration was actually a moment of sobering reality. Even though I could manage to safely drive around a small neighborhood and respond to direct instructions, I was not ready to drive. It wasn’t safe for me to drive. I wasn’t comfortable driving. I didn’t even really want to drive. My quest to get behind the wheel was more about teenage insecurity and the idea of proving myself than anything else. I headed home from the DMV feeling deflated. I had a license in my wallet, but I knew it wouldn’t get much use.

Heading off to college in late 2011 was the perfect opportunity to leave my driving woes behind me. Most freshmen don’t have a car, and living on campus, you don’t need one. Living in the self-contained city of my university was like paradise, and my dreams of being able to get Starbucks or a manicure on a whim had finally come true. In time I was able to push the whole disappointing adventure of driving to the back of my head. When asked, I would simply say “I have my license!” but not elaborate further on my complicated transportation situation.

Even after leaving the safe haven of my little college town, the driving situation didn’t seem as disappointing to me. Though sometimes an inconvenience, with the help of my family, friends, and uber, I was still girl on the move. Still though, somewhere inside me lived an embarrassed teenager who evaded questions about my driving abilities, not ready to face up to this aspect of my limitations. It was a topic I avoided all together, changing the subject as quickly as possible. How can I even begin to explain to someone that I have a license and a car, but no I don’t drive. I mean, this is clearly an “Allie Problem”.

I’m a member of a Facebook group for adults living with Spastic Diplegia Cerebral Palsy. Yesterday, as I browsed the group feed, I saw someone had created a poll. About driving. I winced a little bit. Great. Now I have to read about how aaaaallll these other people have no problem driving… and then I scrolled through the poll’s options.

1.       I drive
2.       I have a license but I don’t drive
3.       I have never driven

I was absolutely floored that #2 was even an option… and to my further surprise… plenty of people had selected it! I flew to the comments section, eager to share my transportation trauma freely for the first time. The replies poured in, with so many people sharing my story. To my surprise, this isn’t an Allie problem at all… but a documented issue in people living with my type of brain injury. A member of the group who lives with CP and has a neuroscience degree even posted a scientific explanation:






A million lightbulbs went off in my damaged brain.

Holy Shit. It’s not me- It’s my optic radiations!!!!

Never in my life had I felt so validated. So understood. My inability to drive isn’t a character flaw or a lack of practice. It isn’t because I haven’t tried hard enough and it’s not because I’m dumb. My struggles with spatial awareness, reaction time, and coordinating the many facets of driving are a direct result of my brain injury and Cerebral Palsy.

And I’m not alone.

For the first time, I feel ready to be open and honest about driving, why I don’t, and the science behind it. I feel like something that was such a source of shame and embarrassment for the past ten years can be put to bed, and that maybe, in sharing my story, others with CP can breathe the same sigh of relief.

Oh, thank god it’s not just me.

I hope teenagers living with CP read this. I hope they know that if they are facing these same issues with driving, it’s okay. I hope they can see beyond the small world of their high schools and realize that independence and adulthood doesn’t depend on driving. No amount of pride is worth risking the safety of yourself and others. With the advent of uber and the possibility of self-driving cars on the horizon, things have never looked so bright. Amazon Prime allows me to get everything I need without ever venturing from my home. It is entirely possible to live an independent, adult life, without ever driving a car.


I might not be beyond the wheel, but I’m still going places. 

Comments

  1. Your post describes me almost to a tee! As a 29-year old woman with both hydrocephalus and mild spastic CP, not being able to drive has cost me jobs, and moving to cities with public transportation wasn't GOD's will for my life up to this point, and it still isn't in His plan. I have lost friends over me not driving, and, unfortunately, continue to be made fun of and pressured to drive by biological family members, even though they know I have more than one disability. Even my vocational rehab counselor wanted to know why I wouldn't get behind the wheel. I relate to your story so much, it's not even funny. I too passed the driving written exam with flying colors, but failed the driving exam 5x for 5 different reasons (hello, I'm disabled!). I too have a "license", but my restriction means that should I drive, someone over 21 with a valid license has to ride with me. So with that said, why would I bother driving? I've had more "teachers" than I can count on both hands, and my parents insist it's the only way to be independent in a city with no public transportation or a reliable system for those of us with disabilities who are working outside the home. I've complained to my city, but nobody is listening, and nobody cares that disabled people like me continue to be harassed by those who have cars, and refuse to opt for a bus system or better ride-share possibilities. The only ride-share in my city that is for work-related stuff is for people who AREN'T riding the disabled system's transportation methods (taxi cabs, or a bunch of rocky buses that make you feel like you're in pre-school again. Seeing those buses pull up puts a target on my back and a huge "DISABLED" label on my chest, figuratively speaking, so I opted out of the buses. The cabs are less embarrassing.) I just have to trust in the Lord to continue providing transportation, and hope to marry a man who won't criticize me for not doing what other "able-bodied" people (and some disabled people) do, like drive a car. I'm still an adult. I still know how to do other things well. I'm not here to please my critics, only the Lord. Thank you for posting this. It was an encouraging read! I'm so glad I'm not alone when it comes to having CP and not being able to drive.

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