Nothing About Us Without Us: Maybe We’ve Been Telling the Deaf Story Wrong

International Week of Deaf People 2026 - Day 5
September 25, 2026

The more I think about today's theme, the more I realise how deep it actually is. “Nothing About Us Without Us” sounds like a simple statement at first, but the more you sit with it, the more questions it starts to raise. Who gets to speak about Deaf people? Who gets to make decisions that affect them? Who gets to tell their stories? And perhaps, most importantly, what kind of story are we even telling?

A lot of the conversations around Deaf people naturally begin with what they lack. They cannot hear. They face communication barriers. They may need interpreters. They need better access to education, healthcare, employment and public services. These conversations are important, and I am not suggesting we stop having them. But the more I learn about Deaf inclusion, the more I think there is another side that deserves just as much attention: what Deaf people have built, what they have achieved, and the lives they are already living.

Because sometimes, when we talk about Deaf people, we accidentally make Deafness sound like the biggest thing about a person but it isn't. A Deaf person can be an entrepreneur. A teacher. An actor. A lawyer. A fashion designer. A filmmaker. An athlete. A content creator. A business owner. A professional. A parent. A student. A politician. A chef. A person who is doing absolutely nothing extraordinary and is simply living their life.

And yes, Deaf people can be wealthy. They can be middle-class. They can be struggling financially. They can be poor. They can be famous. They can be completely unknown. They can live in a mansion or a one-room apartment. They can have a thriving business or be looking for their first job. Deafness does not come with a bank balance, a social class or a particular kind of life attached to it. I think that is something more people need to understand.

There are Deaf people around the world who have built careers and achieved things that millions of people know about. Marlee Matlin became the first Deaf performer to win an Academy Award for acting, and decades later, Troy Kotsur became the first Deaf man to win an acting Oscar. (Oscars Newsletter) Nyle DiMarco became known internationally through America's Next Top Model and Dancing with the Stars and went on to build work around Deaf education and advocacy. And then there are people like Christianah Adenrele, a British-Nigerian Deaf fashion designer and founder of Christianah Jones, whose eyewear brand has counted celebrities including Beyoncé, Lady Gaga and Billie Eilish among its customers. (Forbes)

But here's the part I think is important: we shouldn't only mention successful Deaf people to prove that Deaf people are capable. That would still be another problem. A Deaf person shouldn't have to win an Oscar, build a million-dollar company or become famous before we stop seeing them through the lens of what they supposedly cannot do. The point is not that Deaf people are amazing because a few of them became famous. The point is that Deaf people are people, and just like the hearing population, their lives are incredibly diverse.

Some will become famous. Some won't. Some will become very successful. Some will have ordinary careers. Some will struggle. Some will make mistakes. Some will build businesses. Some will work for somebody else. Some will become leaders in their communities. Some will simply live quiet lives that never make the news.

And all of those lives matter.

That is one reason today's theme, “Nothing About Us Without Us,” is so powerful to me. The World Federation of the Deaf says Deaf people should be at the center of decisions that affect their lives, with Deaf-led organisations playing an important role in shaping inclusive policies and advancing rights. This principle is also connected to Articles 4.3 and 33 of the Convention on the Rights of Persons with Disabilities. (World Federation of the Deaf) but I think we can take the idea beyond policies and meetings.

What if “Nothing About Us Without Us” also means nothing about our stories without us?

Because it is very easy to tell a story about Deaf people from the outside. You can talk about their challenges. You can talk about discrimination. You can talk about accessibility. You can talk about sign language. You can even talk about Deaf culture but there is something different about allowing Deaf people to tell you what those things actually mean from their own experiences.

Imagine a group of people sitting in a room discussing what Deaf people need, while the Deaf people who will eventually use the programme are somewhere else.
Imagine creating a campaign about Deaf people without asking Deaf people what they think about the campaign.
Imagine designing technology for Deaf users without involving Deaf users in the process.

Actually, this isn't just theory. The World Federation of the Deaf has been making this same point in its work around technology: solutions should be developed with Deaf communities and grounded in their lived experiences, rather than simply being designed for them. (World Federation of the Deaf). That is the difference between saying, “We know what is good for you,” and saying, “Tell us what you actually need.”

And I think that difference is important for people like me who want to advocate for Deaf inclusion because advocacy can sometimes become strange if we're not careful. We can become so eager to speak for people that we forget to create space for them to speak for themselves.

We can become so focused on telling people about Deaf people's struggles that we forget to tell people about their businesses, their creativity, their humour, their families, their careers, their achievements, their communities and the ordinary parts of their lives. We can become so focused on saying “Deaf people need this” that we forget to ask “What do Deaf people think?”

And maybe that is part of what today's theme is asking us to change.

The Deaf story should not always be a story about overcoming.

It doesn't always have to be a sad story.

It doesn't always have to be an inspirational story either.

Sometimes it can just be a story about a Deaf person who built a business.

A Deaf person who fell in love.

A Deaf person who became a doctor.

A Deaf person who makes terrible jokes. 😂

A Deaf person who is doing very well financially.

A Deaf person who is still figuring life out.

A Deaf person who is famous.

A Deaf person nobody knows.

A Deaf person who has big dreams and another Deaf person who is perfectly happy with a quiet life.

There is no single Deaf story. There are millions of them.

And I think that is where “Nothing About Us Without Us” becomes much bigger than a slogan. It is about representation, yes. It is about participation in decision-making. It is about Deaf-led organisations having a seat at the table. But it is also about recognising that Deaf people should not simply be characters in stories written by everyone else. They should be authors of their own stories.

They should be part of deciding what gets discussed, how it gets discussed, and what the world gets to see about Deaf life because if we only show the barriers, people may start believing the barriers are the whole story and they are not.

There is a whole world of Deaf people building, creating, leading, working, loving, laughing, succeeding, struggling and simply living and perhaps the more honest way to tell the Deaf story is not to pretend the challenges don't exist. It is to stop allowing the challenges to become the entire story.

That is what I am taking from today's theme.

Nothing About Us Without Us.

Not just when policies are being written.

Not just when programmes are being designed.

Not just when decisions are being made.

But also when the story is being told.

Because maybe we have been telling the Deaf story wrong when we keep asking, “What do Deaf people lack?” Maybe we should also be asking: “What have Deaf people built?”

And even better: “What do Deaf people want the world to know about them?” Maybe that is where the real conversation begins.

This is Day 5 of my International Week of Deaf People 2026 series.

Today's theme is “Nothing About Us Without Us (CRPD Articles 4.3 and 33).”

And honestly, I think it is one of those themes you cannot fully understand by just reading the words once. You have to sit with it because sometimes, inclusion isn't about speaking louder for someone. Sometimes, it is about making sure they are in the room, giving them the space to speak, and actually listening when they do.