When the World Decides Who You Are Before You Do

I have a condition called Retinitis Pigmentosa — a degenerative disorder where the light slowly fades from your eyes. But the first thing I lost wasn’t vision. It was freedom — the quiet freedom to be seen as whole before being labeled.

Science defines disability as an impairment of function. Medically, Retinitis Pigmentosa affects the retina — the delicate light-sensitive tissue at the back of the eye — causing progressive vision loss. It often begins with struggling to see in low light, then narrowing into tunnel vision, and later affecting central vision. It is genetic, inherited through tiny variations in DNA, and while there is no cure yet, researchers are exploring gene therapy, retinal implants, and nutritional approaches like vitamin A supplementation to slow the progression. But medical facts can only describe what is happening to my eyes. They cannot explain what happens to a heart when the world treats you as a condition first, and a human second.

According to the World Health Organization, over 1.3 billion people globally live with some form of disability. Yet most of us are not undone by our bodies — we are undone by design. The real weight of disability is often woven not into the body, but into the structures, attitudes, and assumptions around us.

In schools, “inclusion” sometimes means you sit in the room but never in the circle. In families, love can arrive wrapped in so much caution that it quietly clips your wings. In society, we are praised for existing, pitied for dreaming, and applauded for enduring in systems never built for us.

Psychologists call this secondary disability — the emotional and social wounds caused not by the body, but by bias. A 2020 study in the Journal of Pediatric Psychology found that children with disabilities often internalize the low expectations placed upon them, leading to self-doubt, social withdrawal, and identity foreclosure — a quiet replacement of potential with other people’s labels.

That happened to me.

I was once a loud, curious child — the kind who waved at strangers and asked impossible questions. I laughed without permission. But slowly, I learned to fold myself small. Not because of my eyes, but because people softened their voices when they spoke to me, or spoke about me instead of to me. I began to wonder if my place in the world was something I had to earn by proving I was more than my diagnosis.

Exclusion isn’t always loud.

It’s quiet. Gentle. Draped in kindness.

And yet, it still steals your chance to be seen whole.

What I want is simple — and it is everything.

Speak to me, not around me.

Offer support that listens before it decides.

Include me without explaining me.

Let me write my story before you name its ending.

I am not fragile.

I am becoming.

And becoming is a kind of light you cannot dim.