Disfigurement in the UK

Last week Changing Faces released its much-anticipated report, Disfigurement in the UK, based on a nationwide survey conducted between November 2016 and February 2017. The report makes for unsettling – yet necessary – reading. For despite British society’s claim to fairness and equality, the report shows that when it comes to society’s treatment of, and attitudes towards, people with disfigurement, fairness and equality are severely lacking.

page_1At the beginning of last week, I had the opportunity to attend Changing Faces’ press launch of the report, and one of the questions raised was about the use of the word ‘disfigurement’ itself. Not everyone approves of that word, preferring to use less loaded words like ‘visible difference’ or ‘unusual appearance.’

When I first started volunteering for Changing Faces I too struggled with the charity’s use of the term ‘disfigurement,’ and although it’s still a word I don’t like, I’ve come to appreciate the charity’s reason for using it.

In the introduction to Disfigurement in the UK, Changing Faces explains its choice of terminology thus:

“Changing Faces uses the word ‘disfigurement’ as it is a succinct general term, widely understood by the general public and enshrined in law in the Equality Act 2010, which gives legal protection to people with ‘severe disfigurements.’”

“It’s important to note that not everyone likes the word ‘disfigurement’…Where possible, we encourage the cause of the disfigurement to be explained (e.g. ‘Jane has a cleft lip’; ‘Abdul sustained burns in a house fire’) because this is an informative way of describing the person’s condition.”

Though not ideal, I too use the word ‘disfigurement’ in general terms while trying to be as specific as I can when referring to individual people. For me, there’s also a distinction between saying ‘she is disfigured’ which implies that the disfigurement defines the person (which it doesn’t) and ‘she has a disfigurement,’ which merely states that the disfigurement condition is but a part of that person. For more on this, please have a look at a previously blog post of mine.

What then is life in Britain like for people with a disfigurement? As many as four-fifths of people with a disfigurement who responded to Changing Faces’ survey reported that they’ve experienced comments on their appearance and unpleasant reactions from strangers and almost all respondents to the survey have come across a meme or other social media post mocking disfigurement. Disturbingly, no one has ever had a complaint to a social media website upheld.

In fact, abuse and discrimination against people with disfigurements are rife on the internet, including dating websites and social media. On a couple of occasions, I’ve been trolled on my public Facebook page that is linked to my Born Whole blog.

The abuse included comments like “take those disgusting pictures down” (in reference to photos of children with untreated clefts) and “what kind of disgusting weirdos are they?” (again, referring to children with cleft). But my experience is nowhere near as horrific as those of others who’ve been attacked online because of their appearance.

Meanwhile, half of all schoolchildren with a disfigurement experience discrimination because of their appearance. Every year around 15,000 children in the UK are born with a disfigurement, and thousands more acquire a disfigurement during their childhood. Although a disfigurement doesn’t mean that a child has a learning disability or even a physical impairment, children with disfigurement often experience discrimination, which, according to Changing Faces, “arises through other people’s attitudes and behaviours including teachers’ lower expectations.”

Harassment, staring and abuse in public spaces is another area highlighted in Disfigurement in the UK. As Changing Faces notes, “…it seems that when people with disfigurements are out and about – in the street, on public transport, in a social setting, or shopping – normal rules of civilised society are ignored and people feel free to stare and gawp, to scour abuse and unpleasantness at them. More than four-fifths (81.3%) of respondents have experienced staring, comments or unpleasantness from a stranger.”

Unfortunately, the high figure doesn’t come as a surprise, but what’s particularly distressing is the aggressive nature of the harassment. One respondent recalled being threatened with a knife because of his/her face. Others told of conducting risk assessments before going out to minimise the risk of harassment.

Of course, none of the above is unique to Britain. One responded spoke of hesitating to visit countries where a cleft is seen as evil and a mark of the devil; another recounted a recent visit to Australia where his/her appearance was not only criticised but was urged to seek the help of a plastic surgeon.

Although my own disfigurement is relatively mild, I have experienced stares and comments from complete strangers on the street or public transport, both here in the UK and in my country of birth, Sweden. As a child and teenager, I would regularly avoid groups of teenage boys for fear of being verbally abused and to this day, I instinctively flinch when I come upon a group of older kids on public transport.

While not everyone with a disfigurement will experience abuse to the same extent, at school, work or in public spaces, Disfigurement in the UK lays bare the fact that much still needs to be done to fight appearance-based discrimination in all parts of society.

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