Cleft Lip and Palate News Thoughts

Face Equality Day – Disfigurement in the UK Report & a New Zealand Perspective

Friday 26 May 2017 saw the United Kingdom launch it’s first ever Face Equality Day, the result of lots of very hard work and campaigning by UK organisation Changing Faces which coincided with the 25 year anniversary of their launch.

As someone who has grown up with cleft lip and palate and faced the sometimes harsh realities of wearing my condition on my face, I am so pleased to see such widespread, and mainstream support for Face Equality Day. After having had years of feeling like the general public often just don’t understand, it is heartwarming to see that our story is finally being told to, comprehended and understood by the general public. Like Changing Faces, here in New Zealand, I, and the teams before me and since at Cleft New Zealand, have worked very passionately to challenge the perception of people with facial differences. #FaceEquality trended on Twitter in the UK – to the best of my knowledge, that is the first time in history that our cause has ever gained such widespread momentum and support on social media.

The day also saw Changing Faces release a research publication titled “Disfigurement in the UK” – available for download freely and in its entirety here: – it is well worth reading. People affected by a facial condition will find themselves nodding along in agreement with so many of the findings, while for people who have not experienced life with a facial difference, you are likely to be surprised by some of the findings.

I wanted to highlight a few points from the report, and provide my own commentary.

Disfigurement in the UK tells a depressing story but one that must be told. It highlights the way in which British society – which many would argue is more equal and more fair than ever before – needs to urgently address the way in which it treats people who look different, for whom there is extreme inequality and unfairness. It shows that disfigurement has been left behind in the equality stakes; disfigurement prejudice is still far higher than prejudice based on ethnicity or gender.

I am so pleased to see research evidence (further detailed in the report) to finally support this. This is something that I have felt to be true for years. Whilst I definitely agree that our societies both in NZ and the UK are more equal than ever before, disfigurement and disability is falling way behind in the equality movement. I have often said “people with differences and disabilities are the largest and most under-represented minority”. There is a lot of excellent, very important work going into reducing prejudice based on ethnicity and gender (work which I have vocally and wholeheartedly supported over the years – reading this post might help you to understand why), and awareness of gender inequality and racial inequality as well as a movement to change this has been steadily growing for years. We haven’t seen the same support for people who are discriminated against, often just as harshly, if not more so, for looking different. Of course, like with gender inequality, many people are not knowingly discriminating, but I would love to see more research into unconscious bias as my gut instinct is that this is as prevalent for people with facial differences as it is for women – a group who we know are significantly disadvantaged by factors of unconscious bias.

Disfigurement in the UK speaks to a nation that needs to change. Not to any particular sector or agency or company, but to the wider society where it remains at best tolerated and at worst accepted that people who look different should be treated unfairly or unequally. To correct these injustices will take commitment and action at the highest level of government, but also requires action from every one of us in British society to recognise how we are all bystanders to this inequality, and to commit to ending it.

This comment speaks to New Zealand too. We need your (the general public’s) support on this one – standing up to oppression is incredibly tiresome. We are great advocates for ourselves, but we cannot change everyone’s attitudes by ourselves. The sooner that the public stands loudly and proudly with us and demands an end to this form of discrimination and inequality, the better off our entire society will be.

School is a hard time for all children. This chart highlights the inaction of schools with regard to dealing with bullying, and I think is a sad indictment, and I fear that New Zealand’s chart would look even worse, given that our bullying statistics are markedly worse than that of the UK. There are two alarming issues here – firstly that people are not feeling empowered to report instances of bullying, and secondly that when bullying is reported, it is largely going unresolved. Sadly, we tell our young people with facial differences to anticipate that bullying may well occur, and although we do our utmost to empower them with the tools to deal with it, we need to make a more concerted effort as a nation to stop it from happening in the first place.

Beyond the stage of the job interview, and once into a new role, things don’t appear to get much better. 62.9% said that their appearance had been mentioned by work colleagues, and 26.2% – more than a quarter – have experienced discrimination from colleagues at the same rank or level of employment. Almost a fifth (17.8%) report experiencing discrimination or unfairness from their manager.

Workplace bullying is rife in New Zealand – in fact, it is identified as the largest occupational hazard in our workplaces, and studies have found that we consistently perform worse than both the UK and Australia. I consider myself very fortunate that to date in my career, I do not feel that I have experienced discrimination from my colleagues or managers as a result of looking different – in fact, I feel that I work with people who just see me for who I am. That being said, my condition has definitely influenced where I have chosen to work – I have picked a career where I feel I will face less discrimination, and even within that setting, I feel that I have to work much harder to make a positive first impression in new situations, anyone who finds themselves in a minority situation will know that you have to do something more than equal before you perceive that you will be treated as equal.

More than four-fifths (81.3%) of respondents have experienced staring, comments or unpleasantness from a stranger. Experiencing such unpleasantness which counts as harassment in law, can have a serious impact on someone’s confidence in social situations. We asked respondents if they had ever decided not to visit a specific venue because of how people might react to their appearance. More than half (53.9%) had avoided a nightclub visit, 46.5% a pub, 41.3% a gym, 30.6% a café or restaurant, 28.1% a shop, and 20.7% had avoided a theatre trip. More than a third (36.1%) have experienced unpleasant comments from people in parks and open spaces.

I am pleased to say this has decreased for me in recent years, but I put that down to the fact that my appearance has changed significantly with surgery and orthodontic work, as well as the people with whom I choose to spend my time (if I choose to spend my time with you, I hope you smile as you read this – I think you’re a good person), rather than a marked change in societal attitudes. Looking back now, I know that I had a lot of anxiety about going to clubs and pubs and so I didn’t do this when I should have. I worried I might experience an upsetting verbal or physical altercation, so I avoided the situation entirely. I feel that I missed out by doing that. The introduction of self service checkouts in my late teens were a godsend where I could go to a machine without fearing that glance from a checkout operator that lasted a little bit too long, or going red from embarrassment thinking that I did not deserve to be in the presence of people who I felt were better-looking than me (I’m pleased to say now that I will happily walk up to the checkout operator, and even chat with them if I’m feeling in the mood)! One Saturday in my teens I was walking to work when a glass bottle was thrown at me, shattering at my feet from a passing car as the occupant (unknown to me) was shouting “what the f**k happened to your face?”

“I have been threatened with a knife because of ‘my face’.”

This is not my quote. But it definitely could be. When I was in my late teens, me and my family stopped for lunch in the town of Waimate, New Zealand on a holiday. Before getting back in the car, I wandered away from my family to use the public toilet down the street. As I came out of the toilet, I was accosted by two teenage women and a teenage boy. One of the women had a knife and “offered” to cut off my nose. Fortunately my father (unaware of what was ensuing at the time) called me over at that point from the car, and the teenagers wandered away.

The psychological impact of living with a disfigurement cannot be overestimated. As every section of this report shows, it can have a devastating impact on almost all aspects of a person’s life. We asked respondents on a scale of 1 to 10 how much impact they felt their condition had on their life, and whilst the average was 5.5 – in the middle of the range – 42% of respondents said it had a severe or very severe impact.

Psychological implications of being born with cleft lip and palate I feel are largely overlooked in New Zealand. With the exception of Auckland, a psychologist does not even form part of the cleft lip and palate team – something which I feel is a significant oversight. International best practice outlines the importance of having psychology input on a team and something that I have lobbied for since I started in the General Manager position at Cleft NZ in 2012. We need to continue lobbying Ministry of Health for increased psychological support across many areas of healthcare.

The Good News

Raising these issues with quantifiable evidence is a huge step forward, and although the report may be a sobering read, it is a platform for discussion that will lead to change. For the vast majority of the general public, discrimination based on appearance is something that they don’t have to think about. It does not mean that they do not care about it though, and I believe that this publication and its recommendations by Changing Faces (along with lots of fantastic other research going on at the moment such as that done the Cleft Collective, Centre for Appearance Research and the University of Auckland here in New Zealand) will improve quality of life for people affected by a facial difference both now and into the future.

For years, I have passionately encouraged members of the cleft lip and palate community in New Zealand, and around the world “Don’t let the world change your smile, let your smile change the world“, and I believe that is something that with strength can be and always has been very achievable by each and every one of us. Today, thanks to the hard work of Changing Faces and all of its many supporters and supporting organisations, we have made that reality so much easier for so many more people.