Driving Miss Connie: Trips in my van are always an adventure

One of the most common questions new friends ask me is: “Do you drive?” When I’m feeling snarky, I refer to my wheelchair and respond: “All the time.” But I know they are actually wondering if I drive a car.

It’s a valid question because many people with disabilities do drive using some pretty awesome adaptive technology. However, the short answer in my case is “no.” (You can visit my personal blog to read the long answer.)

Because of my SMA, I do not have the grip, stability, or reflexes to feel safe behind the wheel of a car on the road. As much as I would relish the independence, I have no desire to take the risk. And so, since I was 18 years old, I have owned my own minivan that is equipped with a lowered floor, ramp, and automatic lock for my wheelchair, and have depended on my friends and family to drive me everywhere, from the neighborhood doughnut shop to Vancouver Island in Canada, over 2,400 miles from home.

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Some of my drivers are more cautious, while others are more aggressive, though they quickly learn to go easy on the brakes and approach turns with extra care. While my wheelchair is secured to the floor and I’m secured with a seatbelt to my chair, my muscle weakness means that I can easily get thrown off balance, my head can whip back and forth, or I can fall over to the side. Our common words of wisdom are: “Pretend you have a bowl of goldfish in the passenger seat.”

Driving me in my van requires courage and vulnerability from both me and my driver. I must be willing to put my safety in someone else’s hands and trust them to get us where we need or want to go. They must be willing to help me by being a careful, responsible adult who knows they may also make mistakes or be confronted with outside forces beyond their control.

Sacred moments with driver friends

Our time together in the car is, in some ways, sacred for our friendship. That is why I’ve established a special rule: “What happens in the van, stays in the van.” This refers to a couple of things.

First, if we get pulled over or have a minor accident, I do not reveal the identity of that driver to other friends. I say that “we” had the experience, because I am as much to blame as they are, since it is my car. If the driver is doing their best, then I should also be mindful (not distracting and reckless) of the details that could potentially lead to trouble.

Second, very real and intimate conversations frequently happen in my van. I don’t know what it is about being in that space on the open road going 60 miles per hour, but it does cause us to go deep and speak from our hearts. Whether we confess fears or dreams, grief or hope, I try to guard the personal information that is entrusted to me during these times.

Connie Chandler, back, rides in her van on a road-trip adventure with a couple of “driver friends,” Andrea Smith and Quin Geans. (Courtesy of Connie Chandler)

Last week, I asked a bunch of my “driver friends” to share a one-word description of how they feel about driving me in my van. A few confessed (and others agreed) that it can be stressful because they don’t want to accidentally hurt me, or that it requires vigilance. “Keep watch,” one friend said, “for you do not know at what hour a construction zone will pop out from behind a curve.”

Overwhelmingly, I was amazed at how many positive words they offered: adventure, nostalgia, smooth, opportunity, grace, fun, identifying, privilege, and thoughtful. One friend said, “Participating, because I’m usually participating in something Connie is up to and that’s always a blast.”

As is the case with cooking, showering, and many other aspects of my life with a disability, I am finding that it isn’t the worst thing in the world that I do not drive by myself. It may take more time, energy, and trust to make sure I always have a driver when I want to go somewhere, but the effort is totally worth it.

Having a whole community of driver friends means endless opportunities to participate in fun adventures together. It means being vigilant and thoughtful in stressful situations, and identifying one another’s needs and potential risks to navigate together. It means smooth, grace-filled moments of nostalgically remembering and storing away memories that bind us together. And it is a privilege and an honor to share these experiences with the wonderful people who drive me places.

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.