Driving with Muscular Dystrophy
“No way! You can drive?!” I receive this question or a confused look when I activate the ramp on my adapted vehicle and drive up through the rear passenger door with my power wheelchair. The ability to drive is taken for granted by most people, however for those with physical disabilities it opens many doors to independence and freedom.
A pipe dream
My name is Shaan Lail, I was born in 1997 in Vancouver. I am a proud member of the South Asian community. My love for cars blossomed at a very young age. I enjoyed watching my two oldest cousins spending time in the garage working on their modified Mustangs. It was always my dream to have a car of my own and modify it to my liking, but my journey was atypical.
At age six I was diagnosed with Duchenne muscular dystrophy (DMD), a muscle wasting disease. DMD is caused by an alteration in the protein called dystrophin, which is responsible for keeping muscle cells intact. The condition results in weakened motor functions over time. The life implications used to include using a wheelchair by 12, using a breathing machine by 16 and death by mid-twenties. These implications are now outdated. In fact, medical advancements over the past 40 years now allow individuals with DMD to live a full life.
DMD affects one in 4500 male births. This is due to the gene mutation being present on the X chromosome.
As a result of my diagnosis, my chances of driving were very unlikely, however I remained optimistic that would change. After completing a driver rehabilitation test, I was ruled medically fit to drive. Unfortunately, there was a lack of fit from current offerings of full electronic hand controls required by my diagnosis.
The stars align
Eventually, I found out about a company which had made significant inroads in Europe and was looking to expand. Bozzio AG created a hand control system adjusted by a computer program. The controls are called “ Joysteer” and have many peripherals that cover a multitude of disabilities. The ability to drive is now available for almost all types of physical disability.
The process of receiving a new vehicle, ordering the controls and finally installation took six years. In those six years, I graduated from high school and started at the University of British Columbia. If I was not busy with exams, I would be following up with my mobility dealer about the controls.
Life since driving
By the time my vehicle was completed I was a student at the UBC Sauder School of Business working towards a Bachelor of Commerce degree. Being a commuting student, my best memories were driving around campus. Driving provided me with independence. In my own life, I still require assistance no matter what; however, the ability to drive is unmatched. Less reliance on family means less time they’re on the road. I credit my vehicle for allowing me to break down several barriers in my life.
We live in an amazing time where vehicles can be adapted for a multitude of chronic disabilities. Sometimes as I drive, I think to myself about how far we’ve come. There are barriers to freedom and independence for those of us in the disabled community. These barriers are meant to be broken.