Driving With Hand Controls
February 13, 2020 | Personal Experience
For a while, the most common question I got was whether I could even drive. People did not mean anything cruel by it. They knew I had a progressive neuromuscular disease, they could see my legs were getting weaker, and a car is the one machine where most of us assume the legs do all the important work. So the question was fair, and for a long time I did not have a confident answer. The answer, it turned out, was hand controls, and they changed how I thought about what was still possible for me.
This is the story of how I got behind the wheel anyway. It starts with a car, runs through a small metal lever bolted to the steering column, and ends on a road I drove entirely by myself. This all happened back when I could still stand and walk a little, before I became a full-time wheelchair user, and it stands out in my memory as one of my first real tastes of independence.
The Car That Started It
In January 2020 I got a 2019 Nissan Kicks SR in gunmetal gray. I had spent more time than I will admit comparing little crossovers, and I landed on the Kicks because it was tall enough to get into without folding myself in half, the doors opened wide, and it did not feel like a medical decision. It just felt like a normal car that a sixteen-year-old would be thrilled to have, which is exactly what I wanted it to be.
I went a little overboard documenting it, the way you do with a first car. I shot the badges, the grille, the chrome, all of it, like I was building a catalog. A car is freedom for almost every teenager, but when your world has been quietly shrinking, that freedom hits differently. I was not just excited to have wheels. I was excited that the thing keeping my world from getting smaller might fit in a parking space.
A Lever Instead of Legs
In February 2020 the hand controls went in, and that is the part that actually made the car mine. A hand-control system replaces the two things your feet normally do. There is a lever mounted on the steering column, and instead of pressing a gas pedal with your right foot you push or pull that lever with your hand. Press it one direction to brake, the other to accelerate. Your feet stay off the pedals entirely, and everything that matters happens above the dashboard.
It sounds simple written down, and mechanically it kind of is, but learning it is its own thing. Your whole life of muscle memory says your feet handle speed and your hands handle steering, and now your hands are doing both. The first few times out I oversteered every time I tried to brake, because pulling the lever made me tense my arms and pull the wheel with them. Then it clicked, the way these things do, and after a couple of weeks I stopped thinking about the lever at all. My hands just knew the car.
Learning to Trust It
Getting comfortable meant a lot of slow loops around quiet roads, with someone calm in the passenger seat pretending they were not gripping the door handle. I practiced the boring stuff on purpose, the smooth stop at a light, the gentle roll up to a stop sign, the kind of braking that does not throw your passenger forward. Hand controls reward a light, steady touch, and the more I drove the more natural that touch became.
What surprised me was how fast it stopped feeling like adaptive equipment and started feeling like driving. I would catch myself in the middle of a turn, one hand on the wheel and one on the lever, and realize I was just a kid driving a car. No asterisk. The hand controls were not a workaround I had to apologize for. They were the thing that let me do the exact same ordinary thing everybody else my age was doing.
The First Solo Drive
The real milestone came in August 2020, when I drove alone for the first time. The destination could not have been more fitting. I was heading off to start my junior year of high school, by myself, in my own car, working the gas and brake with my hand. For anyone else that is just the first day of school. For me it was proof of something I had genuinely wondered about a few months earlier.
I remember backing out and waiting for the catch, the moment where something would feel impossible and I would have to admit I needed help. It never came. I just drove. Pulled the lever to go, eased it the other way to slow down, took the turns I had taken a hundred times as a passenger, and parked at school like it was nothing. The whole way there I kept thinking that a few people had quietly doubted this exact drive, and here it was, happening, completely unremarkable. Unremarkable was the best possible outcome.
A Taste of Independence
It is hard to overstate what that car meant at that point in my life. My legs were the part of me the disease was taking first, and a few years after this I would stop walking and become a full-time wheelchair user. I write a little more about that turn in the day my legs gave out, which is the other side of this same stretch of time. But in early 2020 I could still get into a driver's seat under my own power, and the hand controls meant my weakening legs did not have to be the thing that decided where I could and could not go.
Independence is not one big moment. It is a stack of small ones, and a lot of mine came from that gray Kicks. Driving myself to school, to a friend's house, to nowhere in particular just to drive, all of it added up to a version of my life where my disease was not holding the keys. I was. Literally.
A Few More From That First Year
I took a ridiculous number of photos of this car, and I am not sorry about it. Here are a few more from those first months, the badges I obsessed over, the chrome I kept catching my reflection in, and me standing next to the thing that gave me a head start on independence right before I really needed it.
What I Tell People Now
When someone asks me today whether I could drive, I think back to that lever and that first solo trip to school. The honest answer is that the question had a solution all along, and the solution was sitting on the steering column waiting for me to learn it. Hand controls did not just let me drive a car. They taught me, early, that a thing being out of reach for my legs did not mean it was out of reach for me. That lesson outlasted the car, and it is still one of the most useful things my sixteen-year-old self ever picked up.
Written by Ryleigh Newman