Thirty year old British activist Jono Lancaster visited Deaf Children Australia recently as part of his tour to spend time with Australian children who live with Treacher Collins Syndrome like himself. Treacher Collins Syndrome prevents the skull, cheek and jawbones from developing properly. Symptoms range from barely noticeable to severe and disabling but typically include small or absent cheekbones, droopy eyes and deformities of the ear canal that cause hearing loss.
Jono’s parents looked at their tiny little son and gave him up for adoption 36 hours after he was born. Supported by his wonderful, loving adoptive mum, Jono began a long road of personal self-discovery to defy those who made fun of him and become the positive, confident young man he is today. Now he works with adults with autism, has a beautiful partner Laura and travels around the world. He hopes to bring some guidance to the Australian children with Treacher Collins like 22 month old Davie Livingstone, whose mum Carol Webb works at DCA. We felt Jono’s story would not only help all the children he visited but also inspire many others who have faced similar prejudices and challenges.
Jono told us:
“Treacher Collins Syndrome prevented my development in my mum’s womb. It affected my facial features and I don’t have any cheekbones. My ears haven’t developed properly which means I am deaf. I haven’t always thought this but I was one of the lucky ones. Others with the same syndrome have been affected with their breathing, they need to be fed through a tube, and so much other scary stuff… I am very fortunate to have what I have.
When I was five, I got a Bone Anchored Hearing Aid (BAHA) with a screw inserted into the head. I have had six major operations with that. My hearing loss affected my development in walking and talking. I do lots of lip reading now.
The doctors spoke about building up my cheekbones and ears but I always said no. When talking about my cheekbones, the doctors worded it as, ‘We can improve your face’. If it was something for health reasons, my mum would tell me what we needed to do but she always let me choose on issues like that. When I was around 14 to 16, I kept asking ‘Why me?’ ‘Why do I have to look like this?’ But I always said no to surgery as I didn’t want my face improved. I wanted a new face and that wasn’t possible.
Now I am so glad I didn’t change my face. I love my face – I wouldn’t change it for the world. I never felt the need to build my ears up. I love the fact my ears are little – I call them my Bart Simpson ears.
It took me 21 years to accept my face though. Even ten years ago, I found it hard to look in the mirror. I used to push my eyes up to try to make them look normal and I would get so angry that I couldn’t. I got to the point that I avoided looking in a mirror. I absolutely hated seeing myself even in the shop window. At the time, I wanted to be cool and I thought life was cruel. I kept a fringe to cover my eyes and ears. I still cut my own hair for my 18th birthday because I was too embarrassed. Now I am a bit of a poser and I like to look in the mirror. I am proud of who I am and what I have achieved – and Treacher Collins made me who I am today.
But it frustrated me that it took me 21 years to get to that point and that’s why I am over here in Australia meeting all these amazing families. I don’t want the children growing up with Treacher Collins now to make the same mistakes I did.
I had an amazing mum who adopted me. She gave me so much love. But as incredible as she was, I still chose not to tell her about how I was really feeling. One day when I had just had an operation, we were in the London Underground. There was a young couple making fun of me. I was around eleven and I had got used to the teasing. I didn’t think anything of it majorly. I got off the train and realised my mum was still on the tube speaking to this young couple and she had tears in her eyes. I started to realise how it was affecting my mum as well. She was going through what I was going through and I had that guilty feeling that she was upset because of me.
So from then on, I thought, ‘I am the man of the house and it’s my job to protect her. I don’t want to bring her sadness, I only want to bring her happiness’. So I chose not to talk to my mum because I was kind of protecting her. After my mum saw the BBC3 ‘Love Me, Love My Face’ documentary and heard how I felt all those years, she said she didn’t realise how low I had got.
I am 30 now and I go to a lot of schools and talk about my experiences. In that 30 years, what has changed? Some kids still think I am scary and say, ‘What’s wrong with that man’s face?’ There are kids and adults who still laugh and make fun of me. Even doing the TV show, people went out of their way to write negative things online about me and Laura. I have a thick skin. I know I can get through it but if they are doing this to me, they are doing it to others and that’s what makes me angry.
Some people still assume I am stupid, that I have an intellectual impairment because of the way I look. My birth parents still don’t want anything to do with me. And the fact is that will never change. But what has changed is my attitude. I am so much more positive now and life is good because of that. I see all the smiling faces, all the people who come up and say hello. But ten or fifteen years ago when I was in a negative frame of mind, I only saw the people making fun of me. When I heard the laughter, I assumed they were laughing at me. Those negative people are still there and the world hasn’t changed. There will always be good and bad but due to my attitude, life is better.
I use people’s negativity as fuel to the fire. If someone says I can’t do it, I go out of my way to do things I really, really want to do. If I talk about the effects of bullying at a school, I might get angry and have a good cry on the way home thinking about it. But I have a new found motivation to prove all the doubters wrong.
It wasn’t always like that. Due to the negative attitudes towards me, I chose not to travel overseas as a young guy like a lot of my mates. I wanted to be a PE teacher so I did work experience at a high school. But the kids were horrible to me. I thought, ‘How can I have a career where I have to face school kids every day? So I chose not to be a teacher. But now, I love talking to kids at schools. Many are pretty special people and think my face is pretty cool. A lot of kids are so open minded. They think it’s cool to be different and it’s cool to be unique. I have experienced that here in Australia and that’s put a massive smile on my face.
In the UK, I started off visiting schools with children with Treacher Collins. Those talks snowballed on to anti-bullying, depression and suicide workshops in many schools. With limited time in Australia, my main focus has been the families. One in 50,000 children have the condition but it affects each child differently. It can be genetic or a sporadic mutation – like in my case.
My feelings towards my birth parents have changed. When I was in 9th Grade, I thought ‘How could they abandon me in hospital? Your birth parents are supposed to love you regardless.’ And that gave me a knock on effect with my self-esteem. Despite having my amazing mum Jean, I thought, ‘Who else is going to love me if they can’t? Then when I was 23 or 24 and I was in a good place, I wanted to show my face to the world and show how happy I was. I wanted to show my birth parents how happy I was and I wanted to tell them that I haven’t got any negative feelings towards them. If they wanted to meet me, that would have been amazing. But my main goal was to let them know that I’m alright.
They chose not to meet me and it hurt like hell at the time but I was in a good place and I had good people around me. In the future, if they want to meet me or have a relationship with me, I am open to that but I am getting on with my own life.
In Australia, I am visiting children in Melbourne, Adelaide, Perth and Sydney. I have been to the Royal Children’s Hospital in Melbourne and am heading to a craniofacial unit interstate. I will then fly to Auckland where ten families are coming together to stay in apartments for a catch up. I wanted to meet families in Australia and New Zealand and leave behind a support network so kids can hang out and families can share experiences. That was something I craved growing up. It would have been amazing to see a 30 year old ‘me’ – to be shown a light at the end of the tunnel. That’s what moved me to travel to America, Australia and New Zealand – so these kids don’t need to grow up feeling so alone.”
To see more of Jono’s story, visit http://www.bbc.com/news/health-11780938