Rarely Reframed - Katja — Same but Different

Katja has Moebius syndrome — All photographs by Ceridwen Hughes

Rarely Reframed 

Katja - Moebius Syndrome

I have found that, typically, it’s seen as cool to be different unless you are the wrong kind of different: the inconvenient kind that confuses and thus makes people uncomfortable. Growing up as a child with a type of facial paralysis called Moebius, I always felt like I was too much for a lot of people but could never really grasp why I felt that way. I knew I wasn’t the typical definition of normal because my facial muscles were weaker than the average child’s, but I felt so normal that it deeply frustrated me when people treated me like a thing that needed to be fixed.

I found secondary school to be a nightmarish experience, despite how lucky I was to not experience bullying from classmates. I was assigned TA’s in every class, although I knew I was capable of independent working, I felt over-coddled and distrusted to perform on the same level as other teenagers. Sheets would be printed for me in bigger writing without my having requested this as I was perfectly capable of reading the regular sizing. My TA would mix dough in food tech for me despite me insisting I could do it myself. I was constantly being pestered to wear my glasses, which I refused to wear because surely if I had two forms of braces (retainers and a back brace for scoliosis) I shouldn’t have to wear glasses as well?! I was very angry and bitter as a teenager even though I tried not to show it. I didn’t know how to explain how I felt without sounding ungrateful but I felt like a pity project and have always disliked being pitied as, personally, I associated this with people believing there is something about me they need to show remorse for.

I found myself between the ages of fourteen to eighteen caught in a continuous vicious cycle; I hated my face, I felt angry I couldn’t look ‘normal’ like everyone else I knew, I felt guilty because I ultimately knew I was living a privileged life despite all this, and guilt fed right back into self-hatred. I began to feel like my life would always be defined by how I looked and how other people felt about it. The other problem, which I’m sure other people with facial paralysis will recognise, was the constant disconnect between what I believed myself to look like and the way I looked. When you see everyone in your environment use their faces in a certain way, for instance, to smile, it makes an irrational yet powerful part of your brain assume that you, too, look that way. I would always picture myself smiling when I felt happy and would find it jarring when, snapping me out of this reassuring reverie, people would ask me questions like ‘what’s wrong?’ and ‘why are you making that face?’ Whenever someone jolted me out of this comforting image I’d created for myself I would feel very upset and defensive. Disabled people are not represented enough in popular culture; this idea that we are not ‘normal’ feeds on people not having any basis on which to form an understanding of this kind of diversity. We are made to feel so alien when we are just people, and people are far more different from each other than most of us would like to admit.

Katja holding an apple in a photograph taken by Ceridwen Hughes

I found myself between the ages of fourteen to eighteen caught in a continuous vicious cycle; I hated my face, I felt angry I couldn’t look ‘normal’ like everyone else I knew, I felt guilty because I ultimately knew I was living a privileged life despite all this, and guilt fed right back into self-hatred. I began to feel like my life would always be defined by how I looked and how other people felt about it. The other problem, which I’m sure other people with facial paralysis will recognise, was the constant disconnect between what I believed myself to look like and the way I looked. When you see everyone in your environment use their faces in a certain way, for instance, to smile, it makes an irrational yet powerful part of your brain assume that you, too, look that way. I would always picture myself smiling when I felt happy and would find it jarring when, snapping me out of this reassuring reverie, people would ask me questions like ‘what’s wrong?’ and ‘why are you making that face?’ Whenever someone jolted me out of this comforting image I’d created for myself I would feel very upset and defensive. Disabled people are not represented enough in popular culture; this idea that we are not ‘normal’ feeds on people not having any basis on which to form an understanding of this kind of diversity. We are made to feel so alien when we are just people, and people are far more different from each other than most of us would like to admit.

My way of seeing myself really began to change at nineteen when I had spinal fusion surgery for my scoliosis. Ironically, there was no big before and after in my life after this surgery. Instead, I began to realise that while my face did not work how I wanted it to, the rest of my body did, and that I was immensely lucky to be able to use most of it the way I wanted. I began to go running, swimming and cycling and began to feel much happier. Recovery from spinal fusion was horrible and not something I would ever want to endure again, but it did boost my confidence and sense of self-worth in a truly incredible way. After completing my undergraduate degree in History at the University of East Anglia at twenty-one, I landed an internship working for UEA on a community project.

Most of my university friends had left, so I found myself in a house shared with three strangers whom I met and connected with so quickly in the span of a mere year that I will never believe how lucky I was to meet them. This year in Norwich solidified my belief in myself; my employers were inspiring, enthusiastic and genuinely liked me. My social life was fulfilling and exciting. My body had really started to feel like mine. These experiences gave me a new sort of courage I hadn’t had before. All these people had accepted me so easily that it made me believe that was the way things should be instead of the way things could be if I tried hard enough.

After my internship I ventured on to Edinburgh, having been accepted into an MSc programme in Intellectual History at the university there. The people I met served to strengthen my newfound belief in myself. I started learning to play the violin, joined and sang in the university choir, completed a 10k race with two of my friends and worked in a little independent café where the staff became my Edinburgh family. The people I have been lucky enough to share my life with so far, especially in recent years, have made me realise that kindness and understanding are fundamentally important and that there are so many more people in the world who will show you kindness and understanding than those who will withhold them from you. I know I say this having been very lucky with my life circumstances: I grew up in a middle-class city, went to a good school and university, and may have just happened to meet good people by chance. That being said, I want to reassure anyone reading this that you do not have to prove yourself human to people who refuse to see you as anything other than alien. You are yourself, and you have the power to know yourself better than anyone else. Finding people who accept you can be hard, but it is possible, and you will always be deserving of the kind of respect and understanding that you give other people, no matter what you look like.

Katja took part in the Rarely Reframed project and was photographed by Ceridwen Hughes

After my internship I ventured on to Edinburgh, having been accepted into an MSc programme in Intellectual History at the university there. The people I met served to strengthen my newfound belief in myself. I started learning to play the violin, joined and sang in the university choir, completed a 10k race with two of my friends and worked in a little independent café where the staff became my Edinburgh family. The people I have been lucky enough to share my life with so far, especially in recent years, have made me realise that kindness and understanding are fundamentally important and that there are so many more people in the world who will show you kindness and understanding than those who will withhold them from you. I know I say this having been very lucky with my life circumstances: I grew up in a middle-class city, went to a good school and university, and may have just happened to meet good people by chance. That being said, I want to reassure anyone reading this that you do not have to prove yourself human to people who refuse to see you as anything other than alien. You are yourself, and you have the power to know yourself better than anyone else. Finding people who accept you can be hard, but it is possible, and you will always be deserving of the kind of respect and understanding that you give other people, no matter what you look like.

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MOEBIUS SYNDROME

Moebius syndrome is an extremely rare neurological disorder which is present at birth. The exact incidence is unknown. It is characterised by weakening or paralysis of the muscles in the face which control expression and lateral eye movements. People born with Moebius syndrome are unable to smile or frown, blink their eyes, or suck, although sometimes only one side is affected. Predominantly the sixth and seventh cranial nerves are involved but other nerves may also be affected. The sixth and seventh cranial nerves are pairs of nerves (one on each side of the face) which send messages from the brain and are responsible for certain facial movements and sensory functions. With Moebius syndrome, these nerves are either absent or underdeveloped, resulting normally in bilateral facial paralysis, although sometimes only one side is affected.

To learn more about Moebius syndrome, click here.

Source: https://facialpalsy.org.uk

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