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Liam’s story: “Be entirely you, as loud as you can”

Liam has faced stares and bullying because of his condition, but through confidence and creativity, he wants to change the narrative surrounding difference.

I’m Liam and I have Goldenhar syndrome, which means some of the bones in my face didn’t develop fully.

According to my mam, I noticed my difference at a very early age. When I was five, I asked her why I wasn’t born a girl. When she asked me why, my response was that “[My sister] is a girl and she is perfect; there’s nothing wrong with her, so if I was born a girl, there wouldn’t be anything wrong with me”.

However, it wasn’t until I was about seven or eight that I became fully aware of my condition. I had a jaw graft surgery done, called a mandibular graft, which involved using one of my ribs to create a jawbone. I have a scar across my skull now as a result. During this time, I had to have time off school and was home schooled for a while. It was an ordeal, and I think anyone at any age would be aware that this wasn’t a usual thing to go through.

Liam following surgery when he was a child

After the surgery, I started to get bullied quite badly. I was called every name possible, hit, spat on, excluded, laughed at and impersonated. Even my sister was attacked, and I had a scooter thrown at me, which I found bizarre.

These experiences created a lot of latent doubt in myself and my character. I didn’t meet anyone with Goldenhar until I was 25, so for my entire life up to that point it felt like I was the only person with my condition. It made me feel quite broken, like I was “made wrong”. I know now that isn’t the case, but it’s how it can sometimes feel. It’s taken a long while to work on building up my confidence.

I find I can struggle in friendships and relationships as it’s hard to trust people sometimes. Having kids mock you throughout your childhood really sticks with you. As an adult it can be hard to sense the tone of a situation, and I can assume the worst, thinking people will laugh at my expense.

I’ve been stared at my whole life, by all ages: children, adults, elderly people. My parents used to get followed around by strangers in supermarkets so they could try and get a second look. It was frustrating, but a lot of the time my parents would call people out by turning me around to let them see me. To my folks, I was no different. They didn’t need to hide me or avoid anywhere because of ignorant people. They wanted to prove a point, almost like they were saying “If you want to look then look – it’s you who has the problem and pretending that you aren’t looking proves you know your behaviour is wrong.”

In my adult life I had a guy grab my face on a full bus and say, “Stay there, I want to get a proper look at you… Woah mate, eurgh what’s wrong with your face?”. I don’t like confrontation, so I didn’t fight it, I just gave him a weird stare and put my headphones back in. He was drunk and loud and luckily, he didn’t really do anything since I didn’t rise to it. Nobody on the bus was brave enough to say anything in my defence, which sucked, but it also stuck with me because it was obvious just how nervous and insecure ALL people are!

By embracing my difference, I’ve learnt to handle these comments and stares. I grew up listening to rock music and it’s very much a big influence of mine. I have a mohawk (used to be blue), ear stretchers, and various piercings and tattoos. The scar on my skull fits perfectly with this aesthetic, and nowadays I’ve had compliments for it, which is a nice turn of events.

Liam with his blue mohawk

I found a passion in Performing Arts and Musical Theatre growing up, which helped me practice confidence techniques, and because I’m used to getting looked at, I took to it well. I also volunteered at a local youth club which helped teach me about other people’s needs and circumstances. I learnt that everyone has insecurities – traits that they can’t control – but you shouldn’t hide away because of them. I think I am very lucky to be who I am today.

While I’m happy with who I am, I have tried talking therapies and paid privately for support to try and unpick the complex parts of my life. It really helped me to make progress with my confidence. My family is amazing, but I don’t always want to share my deepest feelings with them, so having that outside support was important for me.

People can assume you work on yourself and suddenly get to a place where you feel you’ve made peace, and you’ll never worry again. In reality, I had a lot of questions that just couldn’t be answered for the longest time. It’s finding closure where there might not be any, that brings you peace.

As such, having an avenue where you can express your thoughts is vital. My music was another way I was able to express myself. I see it as the words between words – when you don’t quite know how to describe something, the music can portray it for you.

I taught myself to play the violin while at university. Because of my jaw condition I can’t grip the violin properly, but perseverance and compromise helped me find a nice spot that CAN grip it. I’ve played on and off for almost 10 years! My usual instrument is the piano, and I’ve played for about 16 years now.

In 2022, I formed a band with an amazing bunch of guys. We are called Folding Gold, and we’re a rock band based in Newcastle Upon Tyne. I’m the singer and pianist, Scott is our guitarist, and Martin our bassist. We are currently recording our debut album while we recruit a new drummer. A good few of our initial songs were my bedroom ideas that I had written but just sat on, so it’s weird for me that people were willing to invest in them!

I would love to see more people owning their differences in a way that lets them fit in on their own terms.

We had a couple of debut single releases back in December, which you can check out on all major streaming platforms. They’re called Circles and Drag Me Down. I’m so proud of what we’ve achieved.

We are also hosting a charity festival on Saturday 24th February 2024 called “RAISE UP FEST! 2024” in aid of Goldenhar UK. The hope is to unite people under a common struggle of negative self-image and poor mental health, because it’s not just people with visible differences that feel insecure. Often, we have more in common with each other than we realise.

Aside from my music, something else I’m hugely proud of is the children’s book I’ve written called Little Plasticine Boy. If you love a Dr. Seuss style rhyming story, you’ll really enjoy it. You can have a read on Facebook and TikTok, just search Little Plasticine Boy!

It’s designed to use Goldenhar syndrome to teach children and adults alike how to understand where their worth lies, how to love themselves, and to accept that we are all different. I’ve been told it’s relatable for anyone who feels their body on the outside doesn’t represent them on the inside.

I have a friend kindly creating the illustrations while I seek enough funding to be able to publish it as a proper hardback children’s book.

I would love to see more people owning their differences in a way that lets them fit in on their own terms. We must find ways to challenge the narrative to say: “if we have found ways to love ourselves and our differences, then you can too”. It shifts the power dynamic at a time where the world is so gripped by beauty standards across the board.

Don’t tell people how to be. Show them. Prove it works by doing it yourself. Don’t give in to someone else’s insecurity. Be entirely you, as loud as you can.

One of my favourite quotes lately is: “A ship is safe in the harbour, but that’s not what it was built for”.

Unapologetically carve your own place. You make your spot at the table because you deserve it!

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