My Power Wheelchair Makes Me a Better Mom

This story was originally published on Nov. 18, 2019 in NYT Parenting.

Most mornings, my 2-year-old makes a request to “ride Mama dinosaurs.” What he’s really asking is if he can sit with me in my wheelchair on a visit to our local science museum, which has a paved trail through dense woods with incredible life-size dinosaur replicas. Many weekends we arrive early and join the crowd of families waiting for the doors to open. My enthusiastic toddler pumps his fists, trying to incite a juvenile riot: “We want Tyrannosaurus rex! We want dinosaurs!”

When our son was born, I had a tired, old manual wheelchair, which I rarely used. The chair didn’t support my body the way that I needed, and it was only comfortable for a few minutes at a time. I needed to be pushed by a companion. My disabilities — Ehlers-Danlos syndrome and a secondary neurological condition, dysautonomia — make sitting upright for more than a few minutes, or standing still for more than 30 seconds, impossible. If you spotted me on the street, though, you’d never know that I need a wheelchair. When I walk, I am usually agile and quick; it’s just that I can’t do it consistently or over long distances.

For the first seven years after acquiring a disability, I had been content to pass most of my time in settings that allowed reclining: my home, my friends’ homes, certain coffee shops. In “Anne of Green Gables,” after Anne realizes that her options may be more limited than she had hoped, the narrator explains, “But if the path set before her feet was to be narrow, she knew that flowers of quiet happiness would bloom along it.” That line rang true for me. I found joy in my smaller life.

But around my son’s first birthday, I realized that I needed to rethink my approach to adaptive equipment in order to parent my son the way that I wanted — to be there as he started to discover the world. A few months later, I got my first reclining power wheelchair.

Not one health care provider had suggested that I look into a power reclining chair. The consensus seemed to be that if I couldn’t stand or walk on my own, I didn’t need to do activities that typically entail standing or walking. When I finally asked my primary care doctor for a prescription for the power chair, she readily agreed and even seemed surprised that she hadn’t considered it sooner.

Because of my wheelchair, my son and I can leave our apartment to see dinosaurs together. My son sits on my lap as we zoom to the car, and my husband loads him into his car seat while I back my wheelchair up a ramp and into the trunk of our converted van. I then walk back down the metal ramp and around the car, and hop into the passenger’s seat.

When I walk away from my chair, bystanders sometimes act like they’ve either witnessed a miracle or caught me in a lie. I’m not proud of this, but sometimes, if I’m being watched, I use my hands to prop myself up on the side of the van and then move unevenly and carefully around the vehicle — anything to make using my legs appear a little more difficult than it actually is.

Using a wheelchair can invite judgment — from doctors, strangers and friends. When my former neurologist saw my chair for the first time, he expressed concern that a wheelchair could cause deconditioning — that allowing my body to sit and recline might weaken my heart and further compromise the complex nerve and vascular system that makes standing possible. Because I am deeply invested in my health, I had informed myself about the risks of deconditioning and have made sure not to reduce my daily activity on account of my new adaptive equipment. The gall of my neurologist, to see my chair and suggest that I hadn’t considered its impact. This assessment was based on a total of four 20-minute examinations in as many years.

Strangers do double takes when I stand up out of my chair and walk without apparent restriction. Old acquaintances stop me on the street, with shock and pity in their eyes, asking if I’m okay. Recently in the waiting room at our vet’s office, a man walked in with his cat and, in a voice that you might use with a toddler or a puppy, asked me, “Would you like to see my little kitty cat?” Another woman, when I asked for her help opening a gate to a downtown alley, avoided eye contact and hurried away, murmuring something about having no extra cash.

Each of these troubling incidents is worth the moments with my son that my chair facilitates. After he was born, he and I spent the first 6 months in bed together, becoming family. It’s comforting to us both now, to have his head lean on that familiar spot on my sternum when he’s on my chair. I rest my right arm on the armrest, controlling the joystick, and he sets his chubby palm on my forearm, squeezing tighter when he’s nervous. Knowing that I can be a comfort to him is worth any uninformed side-eye that my adaptive equipment invites. Without my chair, I wouldn’t have witnessed him calling lamp posts “ballerinas” or watched him join in with the dancers performing at the farmer’s market.

My chair can fully recline and is powerful — a 450-pound battle-ax that easily traverses dirt, gravel and grass. We take up space together. It was $26,000 and the van that allows us to transport the chair, nearly $70,000. Insurance reimbursed the majority of the cost of my chair, but we had to pay for our own van. I felt fortunate and guilty after that purchase. I questioned using money we could put toward our son’s education, on a car, for me. It was my son’s presence that convinced me to get a chair and van, though. My own desire to eat dinner out or wander around a bookstore had not been enough. I wanted to be able to be present when it mattered — at parent-teacher conferences and preschool orientations. I wanted to explore and learn with him, not just get the recap after.

My chair can’t solve everything, of course, and just because I have it doesn’t mean I no longer experience pain that keeps me bedridden or heat intolerance that makes environments over 75 degrees intolerable. That said, my chair has reopened the world to me. In the year since acquiring the chair and van, beyond exploring the dinosaur trail, I’ve been to the zoo, hiked in the woods, visited kids’ museums, wandered local stores, and ridden around the city with my son on my lap. I’ve attended swim lessons, playgrounds, dance classes, music classes, play dates, baby showers, doctor’s appointments and, notably, our son’s adoption ceremony. When I bump into a friend on the street, I stop to chat and, when my son wants to go visit his favorite tree, I say yes, happily. Since my chair entered my life, I no longer lie on the floor in public bathrooms to stop myself from fainting.

Before acquiring a disability, I too made assumptions about people who used an accessible parking space or adaptive equipment. Bodies are more complex than I realized: some bodies can always walk, some bodies can sometimes walk and some bodies can never walk. If I see another person using a wheelchair, the only thing that I can know is that they need it at that moment. Maybe the chair enables them to show up for someone who needs them.

Parenting changes all of us. I now memorize ridiculous songs with hand motions and wear nightgowns that match my toddler’s pajamas. My sleep schedule, my concept of a vacation, and my definition of clean have evolved. I have confronted my own fears and the discomfort that comes from others’ judgments, in order to make the path set before me and my son a little less narrow. For us, at the moment, the path happens to be a dinosaur trail.

Jessica Slice is a disabled woman and an M.S.W. candidate at Columbia University where she advocates for accessibility in higher education. She is at work on a memoir about acquired disability, pain, transracial adoption and motherhood.