Treacher Collins syndrome is a condition caused by a genetic mutation, this syndrome is one that Jono Lancaster was born with. He faced a world from a young age where his appearance was markedly different from that of anyone he knew or had seen. The syndrome affects heads and faces and tends to cause underdevelopment of the facial skeleton, cheekbones, jaws, palate and mouth, which can lead to breathing and feeding difficulties. In his case, he didn’t have any cheekbones and his ears didn't develop properly so his hearing is affected and he uses a hearing aid.

Growing up with a facial difference has led Jono Lancaster on a path he walks proudly today, helping and supporting others with facial differences, but he wasn’t always as accepting of his condition as he is today. “Growing up there were times when I was feeling very vulnerable, very scared, and I questioned what my future would look like, with a visible difference. The more I struggled, the more I started to look everywhere for people with visible differences in my favourite films, music videos, sporting arenas, in my playground in friendship groups, however, I didn't see anybody with a visible difference. I was questioning constantly, why did I look like this? Am I ever going to find love, I'm ever going to find happiness. When all you see out there are negative images or negative stories attached to people with visible differences, you start to believe your future is negative.”

In society today, where physical appearance holds significant social currency, the absence of people with facial differences in media could intensify feelings of isolation and negativity for those with a visible difference. Worse still, the rare representations of those with facial differences are often relegated to villainous characters, perpetuating a narrative steeped in negativity and fear rather than acceptance and understanding. The stark underrepresentation extends beyond digital and print media into the realms of art, culture and history and is something he is very aware of.

“Representation matters, like TV, if we're putting a filter on that not showing a broad section of society, we are not giving anything a true representation. The art that we have seen throughout history does not fully represent the world that we live in. That's why it's hugely important for art, to have people with visible differences.”

Lacking role models from when he was younger to today looking back historically, the lack of any differences is apparent even more to those who search for them and would love to see diversity in art like Jono. This is something that he has found throughout his travels, whether visiting galleries in various cities or countries. “I love art, wherever I go in any city, any country, you'll find me looking at art. But one thing I've noticed is that there are no depictions of people with visible differences. Yes, there are interesting, abstract characters, but a human being with a visible difference, I've yet to see one.”

This absence speaks volumes about societal perceptions and the historical erasure of people with visible differences. Art, in its most inclusive form, should reflect the diversity of human experience. Yet, it often fails to do so, instead offering a sanitised view that excludes many. This omission not only diminishes the richness of what art can communicate but also reinforces the marginalisation of those with visible differences.

Today's digital landscape is also heading down a similar path, dominated by filters and the pursuit of unattainable aesthetic perfection, further complicating the quest for acceptance. Social media platforms, equipped with tools that allow for the erasure of any perceived imperfections, promote a homogeneous beauty standard. Every click of the filter button, while seemingly innocuous, perpetuates a cycle of erasure—a denial of the unique beauty inherent in everyone. 

“When it comes to filters, there's two emotions that I have. When an industry or a photographer or a brand, when they filter something that frustrates me, it angers me. We need to see realness. Then when an individual attaches a filter to their images to their photos. That saddens me because already, they've got this learned behaviour to hide their uniqueness, and yeah, that saddens me.”

This virtual alteration of reality not only distorts public perceptions of beauty but also impacts individual self-esteem. It encourages a culture of hiding rather than celebrating one's unique traits, fostering insecurities and a pervasive dissatisfaction with one's natural appearance.

“When it comes to our faces, I think every single one of us should just try and get into that routine of saying this is a photo, and I'm going to share it and that's it. I think we put too much on the finished article, the finished product, it's got to be at the right angle, it's got to be the right lighting, and don't get me wrong, it's fun to take photos with the right angle with the right light and you can have fun behind it. But, when that becomes a must for all your photos, then we're on dangerous ground there.”

For Jono Lancaster, the importance of projects that strive to include people with facial differences in historical and contemporary narratives are not just necessary; they're overdue. Such initiatives provide platforms for visibility and expression, challenge long-standing stereotypes, and foster a deeper understanding of the diverse human condition.  Awareness, acceptance and equality is something that he is passionate about.

“The reason why I'm passionate about campaigns like this or projects like this is there is a message there is a powerful message out there that people were visible difference need to be seen. They should have been seen all those years ago, they shouldn't have been hidden. I know some cultures and countries still hide people with visible differences and that's heartbreaking.”

Today is a long way from his childhood and his confidence, determination and empathy drive a lot of what he does in making the world a more accepting place whilst working with others to help them build up their confidence in the world to be themselves and be proud of who they are.   “I love having my photo done. I love dressing up. I love working with a camera it's something that I enjoy. In the past having my photograph taken used to terrify me and the fact that I've just sat here with you today, you know, chest out, hairy, not been to the gym in a while, I have just turned up as me authentic and vulnerable and I love it.”

In opening up over the years, he has provided a platform for others, advocating for more acceptance and raising much-needed awareness of living with a visible difference for people all over the world.  “In recent years, I've been very lucky to speak to audiences all over the world, about self-love, image, and celebrating who we are. People from all different walks of life, different cultures, different languages, and different races, have all come up to me and said that they have felt the same way. I think we often forget that we have more things in common with our neighbours than we realise. Those things should be talked about, and those things should be celebrated, but instead, we talk about our differences, and people fall out over those differences. The truth is we're all human beings. I know that's quite a cliche to say, but we forget that.”