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Being a Licensed-Driver with SMA
I don’t many who do this, but I do know a few SMA folks who are licensed-drivers. It can be a complicated process for sure (and an expensive one), but nonetheless there are people who manage to do it.
From what I know, there are specialized vehicles in which the steering wheel is more like a joystick. Thus, they’re easier for people with SMA and other physical disabilities to operate. Also, the driver’s seat is removed so that a wheelchair-user can get to the front of the car.
It’s cool that this is an option, but I just haven’t ever looked at it seriously. In college I had a good system worked out in which I hired a couple friends to drive me around, and then I had PCAs stay overnight with me at home. I was too busy to ever give something like this any thought, and I had a good system worked out anyway.
Even today, I’m pretty content with what I have and am in the process of hiring more caregivers. I’m all for taking risks and encouraging others with SMA to stretch their limitations, but this is one area that I’ve always felt the risks are too much, at least for me. With my arm-strength being so weak, I’m not sure I’d be capable of operating even a specialized kind of steering wheel. I also have the worst sense of direction imaginable.
What about you all? Would any of you look into this? Do you know of any SMA folks who do drive? Let me know your thoughts.
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6 Replies
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When I was 20 years old, a new type of specialty adaptive controls were developed that allowed me to be able to drive. Baylor Rehabilitation, located in Dallas Texas, had a van with adaptive equipment that was developed by a company in California. The company used to be known as Scott Vans. Today, the name of this company is Driving Systems Incorporated. Their equipment was modified so that it could be installed in a full-sized Ford van. You accelerated the vehicle by pushing forward on the steering wheel, and you would apply the brakes by pulling back on the steering wheel. It was called a zero effort steering system because it only took 12 ounces of force to accelerate the vehicle and also to apply the brakes. While a normal U-turn requires the driver to turn the steering wheel two or three full revolutions, I only had to turn my steering wheel 90°. In Texas, there were only three licensed drivers. While the cost of the entire system exceeded $150,000, the state of Texas, if you were approved, would pay for the hand controls in the installation. While the purchase of the vehicle was the responsibility of the driver, the state agreed to cover the cost of the installation which made it possible for me to be able to drive myself for over 20 years.
In Kevin’s original post, he discussed a system where you could drive with a joystick type of controller. I test drove one of these systems when they were first developed, and found it to be twice as sensitive as the one that I used on a daily basis. The state of Texas was probably one of the few states who would not register or accept this type of vehicle due to its oversensitive type of controls. I have heard from other people that a new type of joystick drive vehicle is now available for those of us in Texas, but like Kevin said, I think even I would have difficulty with using this type of system due to my muscle weakness. While I know that I’m going to get stronger in the future, this may be something that I can look into at a later date. Losing my ability to drive myself without having someone help me was a challenging time in my life. If I have the ability to regain the ability to drive myself, it would be something that I would definitely look forward to.
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It’s definitely a lot of risk involved. For me, having my JACO robotic arm has revolutionized my independence so much that I don’t really desire other tools and devices as much. And I still have friends to drive me around and public transportation services.
Nevertheless, if driving is something you really want to do, then go for it. I know SMA people who have made it happen.
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When I was in my early 20’s I had several people ask why I didn’t pursue driving. I’m a big proponent of knowing your limitations. What if my hand slipped? What if I accelerated too quickly and my head fell back? Could I turn my head far enough to see traffic? Too many factors that could put my life and the lives of others at risk. For those who do feel they have the ability that’s great, but it’s certainly not for me.
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I totally agree. Again I’m all for going against the odds and overcoming obstacles, but this is one area I don’t feel comfortable with.
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When I was 22 years old, I purchased a vehicle and the state of Texas had the hand controls installed for me. I drove for about 20 or 21 years, and I will say that the freedom of being able to get out and go somewhere without having someone to go with me, was fantastic. As the SMA took control of my body and I started losing muscle strength in my arms, I knew it was time to think about what I was doing. Nobody told me it was time to quit driving. The state of Texas, my parents and my friends never requested that I quit driving. I had to ask myself as to whether or not the risk was worth the reward. After a lot of soul-searching, I realized that if I killed myself because I lost control of my van, this would be a normal risk that we all take when we drive. But, if I was to kill someone else due to my stubbornness and ignorance, that would be a decision that would be very difficult for me to live with. After making the decision to sell my van back to the company who built it, my father and I purchased a Toyota Sienna minivan that had been modified with the wheelchair ramp. This minivan gave me the ability to still go everywhere that I needed to, only, I would have to have someone else do all of the driving. Since my van that I drove was still in good shape, after I sold it back to the company who built it, they sold it to someone else who was having financial difficulties and they sold it for a price that this person could afford. This made me happy because I know that the vehicle that I used to drive was going to provide freedom for someone else. While this was a difficult decision for me to make, it was also an easy decision for me to make, because I knew that my time had come to give up this particular freedom. While I miss driving and the freedom that came along with it, I sleep better at night, knowing that I’m not only keeping myself safer, I’m also doing something that may save somebody else’s life.
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I’m glad it worked out, and while you did have to give up a luxury it ended up helping someone else. That’s really encouraging.
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