Why my husband prefers manual wheelchairs instead of electric ones

My husband, Jared, lives with severe hemophilia B and a seizure disorder. Despite these challenges, he’s active in ways that many people wouldn’t expect. He swims, lifts weights, and plays badminton. He can also keep up with our 5-year-old daughter, who is a huge ball of energy.

We recently took our daughter to a trampoline park. While Jared and I mostly stayed on the sidelines, our daughter bounced from wall to wall and played dodgeball with the big kids. Watching our daughter’s joy and limitless energy was entertainment by itself.

For Jared, these active moments are precious, not only because they’re joyful but also because they reflect his independence. Jared is ambulatory 99% of the time. He walks, runs, and moves like anyone else would. But that remaining 1% is when bleeds happen.

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Mobility challenges during bleeds

When a bleed flares up, it affects Jared’s mobility. Some bleeds are minor, slowing him down but still allowing him to get around. Others, such as the dreaded iliopsoas bleed, can be severe enough to keep him in bed for up to two weeks while he recovers. During recovery periods, mobility aids can be a game changer.

Jared actually has fond memories of using a wheelchair. Back in elementary school, he sometimes used one during bleeds. He talks about zooming down the school hallways with the speed and confidence of a pro. His friends would sometimes ask if they could try riding it. Jared also remembers the privilege of using the school elevators, which are normally reserved for teachers, and feeling like he had access to something special.

Even now when he uses a wheelchair, Jared still navigates with that same sense of independence and expertise. He doesn’t need much time to reacquaint himself with the feel of the chair, smoothly directing it where he needs to go. He enjoys that fluidity — the sense of control it brings.

During a recent bleed, we decided to visit a mall. Knowing that his knee was still recovering, Jared wanted to borrow a wheelchair. Unfortunately, none were available. A mall guard told us we’d need to rent one, which felt unnecessarily complicated for a quick visit. Jared shrugged it off.

Instead of using a wheelchair, we strategized. We mapped out a route that would shorten our walk while still hitting the key stores we wanted to visit. It worked surprisingly well. Afterward, he felt fine.

Later that day, we explored the idea of buying a wheelchair. I encouraged him to look for something new, maybe even sleek and shiny — something he’d enjoy using whenever the need arose. That’s when Jared surprised me with his response: “If I were to get one, I’d never buy an electric wheelchair,” he declared.

Jared’s preference for a manual wheelchair isn’t rooted in practicality or cost. To him, it preserves a sense of autonomy that he values so much. Pushing the wheels himself feels natural. Even when his lower body is incapacitated, his upper body is still fully capable, and he doesn’t want that ability to go unused.

For Jared, maneuvering a wheelchair is a form of exercise. It’s a chance to remain active and mobile, even during a bleed. He finds a certain satisfaction in knowing that while part of his body is recovering, the rest of him is still working.

This isn’t to say that power wheelchairs don’t serve a purpose — for many, they’re life-changing. But for Jared, in his current state, a manual wheelchair aligns more with how he wants to navigate the world. It’s a choice rooted in what feels right for him and his body.

A personal preference, not a statement

I want to emphasize that Jared’s thoughts about wheelchairs are his own. This is what works for him at this moment in his life. Everyone’s experience with mobility aids is unique, and what feels right for one person might not be the best option for another.

Still, it’s fascinating to hear Jared reflect on these things. I often think about the balance he strikes between independence and acceptance. He’s willing to use a wheelchair as needed, but on his own terms. And when he does, he finds a way to make it work for him in a way that preserves both his dignity and his sense of self.

For now, we haven’t bought a wheelchair. But the conversation has opened my eyes to something I hadn’t thought about before: the profound connection between mobility, independence, and identity. For Jared, a wheelchair isn’t just a tool; it’s something that allows him to adapt without feeling like he’s lost a part of himself. To him, that’s the most important thing.

Note: Hemophilia 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 another 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 Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.