My daughter and her wheelchair taught me lessons in accessibility
Once Cammy was in a wheelchair, going to a game took planning, vigilance
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I never thought about where I sat in the school’s gymnasium until my late daughter, Cammy, gained a wheelchair when she was 3. For most of my life, taking a seat was automatic — I’d climb to the top row of the bleachers, without hesitation, and settle in wherever the view of the game was best.
Accessibility was invisible to me because it had never needed to be visible.
Once Rett syndrome placed Cammy in a wheelchair, something as simple as attending a game required planning and vigilance, and was yet another adaptation we needed to get used to. We had to consider how to enter a building, whether the doors were accessible, how to reach the gym or auditorium, and whether accessible seating even existed. If it did, it was often an afterthought — tucked away on the side, far from the action.
I also learned to stay alert, keeping my reflexes sharp in case an errant ball came flying toward us, a constant reminder that many spaces weren’t designed with wheelchair users in mind.
Our usual spot was alongside the bleachers, offering a limited and often obstructed view of the game. I was never fully immersed in what was happening on the court or field. Most of my attention was always on Cammy — making sure she was comfortable, that she was positioned right, and that her show was still playing on the iPad. While other parents cheered freely, my experience was quieter and more divided. I was present, but differently.
A change in how I see things
At the time, this felt normal. It became our routine, and like many caregiving realities, it blended into the background of everyday life. I did not dwell on what was missing; I focused on what was necessary. Accessibility was not a concept or a political issue; it was deeply personal. It was my daughter’s comfort, safety, and ability to be included.
Since Cammy passed away from complications of Rett syndrome, I no longer take climbing bleachers for granted. Each step up is heavy, but once I’m sitting high above the court, I’m struck by how effortless it feels now, and how that ease once belonged to a version of myself who hadn’t yet learned these lessons. The view is clearer, but it’s lonelier.
Cammy changed how I see the world, and even in her absence, I notice accessible entrances, seating placements, who is included — and who is not. Her wheelchair taught me that access is not about convenience; it is about dignity and belonging.
Though she is no longer beside me, her perspective remains with me, shaping how I move through spaces I once navigated without any thought.
Note: Rett Syndrome News 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 Rett Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Rett syndrome.
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