Before I tell my story, it’s worth explaning what albinism actually is .

Before I tell my story, it’s worth explaning what albinism actually is . Most people have heard the word, but very few really understand it.

Albinism is a genetic condition that affects how the body produces melanin. While people tend to associate it soley with colour - very pale skin, hair and the mythical red eyes - the biggest impacts are usually visual: vision impairment, light sensitivity, difficulty recognising faces at a distance, problems with depth perception and eye tracking. It exists on a spectrum, and no two people experience it in exactly the same way. It’s lifelong, and it shapes how you move through the world - often in ways that aren’t obvious to anyone else.

That gap between what people recognise and what they actually understand sits at the heart of this story.

The first thing people usually notice about albinism is how visible it is.

What they don’t see is how early you learn to disappear.

I knew something was different about me long before I had language for it. By the time I was five, I was already undergoing frequent eye testing - painful drops, bright waiting rooms, eye operations, adults silently hovering with concern I didn’t understand. No one really explained what was happening. I just learned that my body caused worry and discomfort, and that enduring it quietly was expected.

I grew up in the 1980s and 90s, before anyone talked about disability as a spectrum. When I was born, the phrase used was “partial albinism.” To parents, that sounded reassuring. Mild. Not a big deal.

What it actually meant was that my symptoms were constantly minimised.

Because I didn’t match the narrow stereotype people recognised from popular culture, the message - spoken and unspoken - was that I should be able to cope. That if something was hard, it probably wasn’t that hard. That the solution was usually to try harder, put up with it, or stay quiet.

So I did.

I grew up in Cairns, Far North Queensland, the skin cancer capital of the world. At school, no one checked whether I could see the board. I wasn’t allowed to wear sunglasses. Assemblies were held outside in full sun, and if you moved into the shade of a tree, you were reprimanded. The only way to protect myself would have been to publicly name my condition - something I’d already learned was unsafe.

So I stayed seated. I got headaches. I got sunburnt. I learned that protecting myself came with consequences.

At the same time, I was very visible to other kids. I was teased for bringing sunscreen. Called Casper, Marshmallow, Pinky. Told I’d been drinking too much milk, and dropped in bleach as a baby. Used to explain similes in English class - “Emily is as white as paper.” People recognised me from far away in corridors, while I couldn’t recognise them at all. My confusion was treated as "docile". My silence as weakness.

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And yet, somehow, I was still treated as though I didn’t really have a disability.

That contradiction - being too different to be accepted, but not different enough to be supported, shaped everything that came after.

It taught me not to ask for help.
Not to draw attention to pain.
Not to trust that anyone would believe me.

So when my back hurt badly as a child, I stayed quiet - even when a teacher laughed at the idea that a child could have back pain. When I struggled with eating disorders, I hid it. When I was bullied, I didn’t report it. When opportunities came along, I didn’t reach for them, convinced someone else would always be chosen and that being visible only led to more hurt.

Those lessons didn’t stop at childhood.

They followed me into adulthood - into relationships where I didn’t know how to advocate for myself, into patterns of silence that made me vulnerable to abuse, into a life shaped by what I avoided to cope. I still dream about being at school. Over and over again. As if part of my nervous system is still there, waiting for it to end.

It wasn’t until much later that the physical risks became impossible to ignore.

My first serious skin cancer risk appeared when I was very young. I didn’t recognise it for what it was . No one had taught me to. When I finally sought treatment years later, I was overwhelmed with fear and shame. Only then did the reality land fully: my risk isn’t abstract. It’s exponentially higher. And that was risk was amplified - shaped by years of misunderstanding, minimisation, and lack of education.

I eventually found my way to stand-up comedy.

At first, it was survival - a way to reframe painful experiences into something people could laugh at, and therefore listen to. When I started including albinism in my set, something unexpected happened: people paid attention. They learned. And through that, I found online albinism communities I didn’t even know existed.

I’m genuinely glad those communities exist now. I’m relieved that many children with albinism are recognised, supported, and protected in ways I could only have dreamed of.

But there is also grief.

Grief for the child I was, growing up without language, without peers, without permission to need help. Grief for how different my life might have been if understanding had come earlier.

That grief is the ghost in my machine.