Culture

Still not listening: Sickle cell and the cost of ignoring voices

In the UK, around 15,000 people live with sickle cell. Yet, this conditionremains overlooked, underfunded, and misunderstood – in our hospitals, in research, and even in our communities. During Sickle Cell Awareness Month, I want to share what I’ve learned from listening to Black mothers, patients, and patient advocates – and ask why, after all these years, are people still not listening?

Whose voices count in healthcare? Whose pain is believed? Whose futures are valued?

Uncited: The Quiet Theft of African Knowing Part 3

We are often told we are not present in AI.

That the reason artificial intelligence systems replicate harm is because people like us were left out of the room. That data on our lives is scarce. That algorithms are biased because they weren’t built for us, or by us.

But that is not the full story.

Uncited: The Quiet Theft of African Knowing Part 2

Sometimes, when I type into ChatGPT, it answers like it knows me.

Not personally. Not by name. But something in the tone, in the pacing, the warmth, the rhythm feels familiar. It’s calm. It’s clear. It leans in like it’s listening. And sometimes, if I pause long enough, I hear something that sounds like us.

Uncited: The Quiet Theft of African Knowing

I was born and raised in London. Educated in its systems, shaped by its language, and politicised by its silences. But my way of knowing was never just British. It was African before I had the words for it.