My Rollercoaster Spine and Castle Neck

I often have Children stare at me in curiosity. On a few occasions many years ago when I’m waiting for a bus, young children of 3-5 years old would look and ask their mum ‘what’s wrong with that man?’ More often than not the mum would tell their child of and cross the road in embarrassment!

Children sometimes ask about the bump on my head, or the way I walk. And I welcome it. Curiosity is how we grow. I was born with Klippel-Feil Syndrome, which affects how my spine and neck developed. My neck is shorter, with webbing, and my spine curves like a rollercoaster. I also have an encephalocele—a condition where part of my skull didn’t close properly before birth, so a small sack of fluid pushes out from the crown of my head. It’s not painful. It’s just part of me. I explain it to children like this: ‘My body is built a bit differently. It makes me unique. And it doesn’t stop me from doing amazing things.’These differences have shaped how I move through the world—but they’ve also shaped how I see the world. Disability isn’t about what’s missing. It’s about adaptation, creativity, and resilience. When kids ask questions, they’re opening a door. I walk through it with honesty, humour, and the hope that one day, difference won’t need explaining—it’ll just be accepted.

I used to feel awkward when parents pulled their children away, as if my body was something to be ashamed of. But over time, I realised their reaction wasn’t about me—it was about discomfort, uncertainty, and a lack of language. They didn’t know how to explain difference without fear.

That’s why I choose to explain it myself. Not with medical jargon, but with metaphors and stories. I tell children my spine is like a rollercoaster, my neck like a castle turret with a drawbridge of skin, and the bump on my head like a little water balloon that never popped. They get it. They smile. Sometimes they ask more.

And in those moments, I see something shift—not just in the child, but in the adult nearby. Curiosity becomes connection. Difference becomes dialogue.

These everyday encounters remind me why I write, why I speak, why I advocate. Because visibility matters. Because stories soften the edges of misunderstanding. Because when we name our differences with pride, we give others permission to do the same.

So yes, children stare. And sometimes they ask. And I’m glad they do. Because every question is a chance to rewrite the story—not just of disability, but of what it means to be fully, unapologetically human.

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This blog was developed with support from Microsoft Copilot, a digital writing companion used to refine structure, clarify messaging, and enhance accessibility