Jono Lancaster On Why AI Should Never Decide What Normal Looks Like

There is something deeply troubling about a world in which artificial intelligence can look at someone’s face, decide that it doesn’t fit society’s idea of normal, and attempt to change it.

But for Jono Lancaster, this is not simply a debate about technology. It is personal.

Jono, who was born with Treacher Collins syndrome, has spent years challenging perceptions of facial differences, promoting self-acceptance and encouraging others to embrace the things that make them unique. His message has always been powerful: you do not need to look like everybody else to be beautiful, worthy or enough.

Yet, despite all the progress he has made in raising awareness, artificial intelligence is presenting a new challenge.

When AI tries to erase the very thing that makes us who we are

In a recent BBC Wales investigation, Jono spoke about an experience that left him feeling deeply uncomfortable.

He received a message from a complete stranger who told him they loved his work but had used artificial intelligence to make him look “normal”. They had then sent him the altered photograph.

Perhaps the sender believed they were doing something kind. Perhaps they thought they were offering Jono an improved version of himself.

But the impact was anything but kind.

Jono described the experience as “super offensive”.

And it is easy to understand why.

Imagine spending years learning to accept yourself, overcoming bullying, challenging discrimination and encouraging others to love their appearance, only to discover that someone has taken your photograph and decided that your face needs correcting.

It sends a devastating message.

It suggests that the face you have worked so hard to embrace is somehow not good enough.

Jono has been particularly concerned about the impact these altered images could have on young people who follow his work. He speaks to children and young people about confidence, identity and accepting themselves. He does not want them to see digitally altered photographs of him and believe that he has somehow agreed that his natural appearance needs fixing.

His response is simple but incredibly powerful:

“I love my ears and my beautiful face and I don’t want it changed.”

And why should he?

The danger of allowing technology to define beauty

Artificial intelligence is becoming part of everyday life. We use it to edit photographs, create content, generate images and transform the world around us.

But when AI is asked to make somebody look “normal”, what does that actually mean?

Who decides what normal looks like?

The BBC investigation tested several popular AI tools, including Grok, Gemini and ChatGPT. When prompted to make people with visible differences look normal, some of the tools removed or altered their facial differences.

Importantly, they did this without changing other aspects of the photographs, such as clothing, hairstyles or backgrounds.

This raises serious questions about the assumptions built into artificial intelligence.

If a technology repeatedly removes scars, facial differences or other visible characteristics when asked to create a supposedly normal appearance, what does that tell us about the images and beauty standards it has learned from?

Technology does not exist in isolation from society. It reflects the information, images and patterns used to develop it.

And if those patterns overwhelmingly represent one narrow idea of beauty, people who look different risk being erased all over again.

The problem is not simply that an image has been edited.

The problem is the message behind the edit.

Jono Lancaster: Turning personal experience into positive change

What makes Jono’s story particularly important is that he has spent much of his life turning his own experiences into opportunities to educate and inspire others.

Born with Treacher Collins syndrome, Jono has faced the challenges that come with having a visible facial difference.

But rather than allowing other people’s perceptions to define him, he has worked to challenge stereotypes and encourage greater understanding.

His work is about far more than raising awareness of a medical condition. It is about changing the way society sees people.

It is about reminding us that a person’s appearance should never determine their value, opportunities or place in the world.

And now, as artificial intelligence becomes increasingly influential, that message matters more than ever.

Jono is also working with Face Equality International to help develop a more diverse database for AI.

This is an important step because representation needs to exist not only in our communities, workplaces, schools and media, but also in the technology shaping our future.

People with facial differences should not simply be included as an afterthought. They should be part of the conversation from the beginning.

The impact on young people cannot be ignored

One of the most concerning aspects of this issue is the potential effect on children and young people.

Growing up can already be difficult when you look different from the people around you.

Children with visible differences may experience unwanted attention, intrusive questions, bullying or exclusion. They may spend years trying to develop confidence in a society that repeatedly tells them what beauty is supposed to look like.

Now imagine those same young people growing up in a digital world where artificial intelligence can instantly remove the very features that make them different.

What message does that send?

That they would look better without their birthmark?

That their scars should be hidden?

That their facial features need correcting before they can be considered beautiful?

We should be moving in the opposite direction.

Young people deserve to see people who look like them represented positively and authentically. They deserve to understand that difference is not a defect and that they do not need to change their appearance to earn acceptance.

Jono’s work is so important because it provides exactly that kind of representation.

He demonstrates that confidence does not come from looking a certain way. It comes from understanding that you are worthy exactly as you are.

Consent, respect and the right to own your image

There is another important issue here: consent.

Just because artificial intelligence gives someone the ability to alter another person’s photograph does not automatically give them the right to do so.

A photograph is not simply an image to be improved according to somebody else’s preferences. It represents a real person, their identity and their lived experience.

When somebody removes a visible difference without permission, they are making a decision about another person’s appearance that may have a much deeper emotional impact than they realise.

Good intentions do not always prevent harm.

We need to think carefully about how we use these tools, particularly when editing photographs of people with disabilities, scars, birthmarks or facial differences.

There is a difference between using technology creatively and using it to reinforce the idea that certain people need fixing.

That distinction matters.

We need AI that reflects the real world

Artificial intelligence has enormous potential to make a positive difference. But that potential must come with responsibility.

AI developers need to consider how their tools respond to prompts involving appearance, identity and visible differences.

Greater representation in training data is important, as are safeguards that prevent technology from automatically reinforcing harmful assumptions about beauty and normality.

The aim should not be to make everyone look the same.

It should be to create technology that recognises and respects the diversity of the people who use it.

As Jono’s experience demonstrates, inclusion cannot simply mean allowing everybody to use a platform. It must also mean ensuring that people are not digitally erased or encouraged to conform to somebody else’s idea of perfection.

Different is not something that needs fixing

Perhaps the most important lesson from Jono Lancaster’s experience is that we need to challenge the language we use around appearance.

Why do we describe one face as normal and another as different?

Why is difference so often treated as something negative?

And why should anybody feel entitled to change another person’s appearance because they believe it would look better?

We all have features that make us who we are. Some are visible immediately; others are not. Some people have scars, birthmarks, facial differences or medical conditions. Others have characteristics that society has taught them to feel insecure about.

But none of these things makes somebody less deserving of respect, love or acceptance.

Jono’s words are a reminder that the goal should never be to erase difference. The goal should be to create a world where difference is understood, respected and celebrated.

Artificial intelligence may be able to change a photograph in seconds.

But it cannot rewrite somebody’s identity, erase their experiences or decide what makes them beautiful.

And it certainly should not have the final say on what normal looks like.

Jono Lancaster loves his ears and his beautiful face. That should be enough.

Perhaps it is time the technology we create learned to respect that, too.

A final thought

We often talk about building a more inclusive society, but inclusion means very little if we continue to send the message that people must change their appearance to fit in.

Jono Lancaster has spent years encouraging people to embrace who they are. His experience with AI is another reminder that the fight for face equality must continue, including in the digital world.

We don’t need AI to make people with visible differences look normal. We need society to understand that they already are.