Emma's Visible Difference Story

Emma’s Visible Difference Story

Emma was born with Char syndrome which affects the structure of the face as well as flattening of the nose. She’s also very visually impaired and is sharing her story so people understand #VisibleHate has to end.

People would shout “have you seen her” and their whole group would laugh. Some men while drunk would be rude and demeaning, they would openly discuss whether they would sleep with me or not.

I’m Emma, and I was born with Char syndrome which is a very rare genetic condition. Amongst other things it affects the structure of the face as well as flattening my nose. I am also very visually impaired.

My journey started at middle school. The actions of my peers changed. It went from staring at me, to words that hurt and then into people tripping me up. They would call my nose a snout and call me piggy or act physically sick from looking at me.

I felt hopeless and silenced. At the age most kids are figuring out who they are and planning their life I was thinking about ending mine. Something had to change so I looked inward and tried to work on my confidence.

In my late teens I would try and go out with friends at night, I came to understand alcohol made people’s behaviour worse. People would shout “have you seen her” and their whole group would laugh. Some men while drunk would be rude and demeaning, they would openly discuss whether they would sleep with me or not.

When people are drinking I think there’s more of a chance for violence. I would plead with friends just to ignore the abuse because I was worried they might get hurt standing up for me. In the end going out when there’s lots of alcohol wasn’t worth it for me. I wanted to have fun but usually ended up crying in the bathroom feeling ashamed.

I have changed my behaviour to try and minimise the amount of abusive comments I receive. I shouldn’t have to do this. I started to realise staying silent and not showing the person the impact of their words meant they would never feel regret or change.

Now I might have a verbal incident every two weeks or so. Sometimes I say something back. I don’t want to escalate the situation but I want to remind them that I’m human and not a verbal punch bag to abuse.

I also started to use Instagram as a basic art account. Slowly I started to talk to people and expressed my opinions more. This turned into talking about mental health and disability issues. I opened up about my own experiences and finally I felt comfortable to put a picture online for the first time.

I now think it’s important to speak out and try and educate people about these issues, to sway public opinion. This behaviour is unacceptable and classed as a hate crime. I want young people dealing with abuse to feel less alone and more accepted in society.

You could be the strongest most confident person out there and the abuse will still have an effect. It’s almost a subliminal message being played on repeat that you are less than others. It doesn’t magically stop when you become confident.

Some days are better than others and the journey of self-acceptance is one I will be on for the rest of my life. If you are someone who makes fun of people for the way they look I want to tell you are not original. If you say something, odds are it’s not the first or tenth time that person has heard it. These comments build up, we carry them around in our heads.

There are things that I can do to lighten the burden of those words but don’t ever think the weight of words can’t crush a person.


Have you, or someone you know, experienced abuse or harassment because of a visible difference?

You don’t have to deal with these experiences alone. We offer confidential practical, emotional and psychological support to people with a visible difference. You can also read about what a hate crime is and how to report it.

No one should experience abuse, in person or online, because of how they look. Changing Faces are campaigning to end #VisibleHate – add your name to support us.

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