Sprechen Sie Englisch? – Understanding what it’s like to not be understood

As those who know me well will know, in my earlier years, I struggled significantly to express myself using speech, and am all too aware of how painfully frustrating that is. I have been fortunate however, for the last 15 years or so, to have had speech which has been able to be understood widely by others and on a day to day basis, nowadays I give little thought to my ability to communicate.

For most of us, speech and language are two things that we very much take for granted and don’t give a great deal of thought to – not until we, or someone else that we are close to can no longer communicate – a situation that can develop incredibly rapidly, such as following a stroke or a head injury. Often, your language will be intact, but your speech may not be, meaning that although you know exactly what you want to say, you cannot express the thought in your head unassisted.

Travelling this week in Austria – a German speaking nation – has prompted me to rethink about this, as the foreign country analogy is the best one that I can think of to help people who have had the privilege of intact speech and language throughout their life, the insight that is needed to understand what life must be like with a communication impairment.

Of course, even the foreign country analogy has its limitations, because in a country such as Austria with an education far superior to that of English speaking countries when it comes to languages, you don’t have to look far to find someone who speaks English – although it certainly cannot be assumed – most younger people will have a level of English that is at least sufficient to answer a query about many everyday things, but many from the older generations may not speak English very well (or at all).

However, even despite being somewhere where I can manage to get by without speaking the official language of German, I notice a few things that I’m doing that someone who is struggling to express themselves due to a communication difficulty may do.

  • I fear communication interactions and breakdowns – basically, I don’t want to be any more awkward than I already am. I get nervous when I am going to have to speak to someone, as I know that I will only succeed in my interaction with a skilled communication partner – i.e. in this scenario, someone who is fluent in both German and English. This is something I have no control over – it is pure luck whether I get someone who can understand my language, and so I fear it, because my ability to communicate is no longer in my hands. If I’m not met with a skilled communication partner, my knowledge of German is so poor, that I cannot repair it beyond Ich kann kein Deutsch (I can’t speak German) and walking away feeling defeated and without having achieved whatever I set out to.

  • I am illiterate – I can read and understand things that I’m expecting to see – e.g. I know my station is Schottenring so I can recognise that sign and know to get off the train there, but when a warning sign pops up on the street somewhere, I am completely oblivious to its meaning, and could well be putting myself in harm’s way. It’s frustrating as all I see are characters on a sign. Similarly I look at the list of ingredients in food and have to take a chance on things I don’t recognise and hope it’s not going to taste too awful or worse, turn out not to be food at all. I tried to get money out at a cash point – the first one I used did not have multilingual options, so I had to cancel the transaction and take my card back and find a different bank’s ATM with English options as I was worried I might otherwise make a mistake with my money. Similarly for people who have a stroke or head injury and develop aphasia, they may see the letters as a a jumbled sequence of characters from which they can discern no meaning – unfortunately in their case, translations are a lot less readily available.

  • I employ avoidance strategies – I look for ways to avoid interacting with people in German if possible as to do so is hard. This includes things such as buying a whole lot of things at once so there are fewer interactions required, looking for places where I can purchase things self-service so I can take my time to read through the German text and figure out what to do without fear of judgement from the machine. I am pretty organised and independent so I know where I’m doing and where I’m going and can look like a local that other people may wish to ask questions of (e.g. for directions). To avoid random interactions with people, I put my headphones in, like a big “do not disturb” sign. I seek out restaurants that are welcoming of my “code” by having displayed a bilingual menu. However, I also am careful to moderate the avoidance strategies as I don’t want to miss out either – fortunately for me FOMO trumps a communication barrier, so for example, yesterday evening when I went to one of the night markets and saw and smelled some amazing food being served by someone who could only speak German – we made use of a more basic mutual common code – pointing and gesturing – so that I could get what I was after and not miss out. It felt incredibly primitive though and a bit undignified for us both.

  • Doing everyday things is stressful – as above, even obtaining food becomes harder – I could do my shopping in my sleep at home as I can read all the information, and converse with people easily if required. Now suddenly, I need to think a lot harder to obtain the essentials!

  • I overcompensate – when I have an opportunity to use the limited German that I do have, I apply it as liberally as sunscreen almost by way of an apology for having had to just communicate in English. At the end of an interaction, someone who speaks German may expect to hear dankeschön (thank you very much) firstly to thank you for handing me the food, secondly for handing me my change and then a third time as we part ways at the end of the interaction – in English I’d have simply said “cheers” or “thank you” once, followed by “cya” or “bye”.

  • I lose aspects of my personality – when I’m speaking in English, I’m full of expression, emphasis, enthusiasm, humour and tone when I communicate. I use my communication skills to make whoever I’m communicating with feel more at ease and I hope that I come across as warm and friendly. Similarly, I can use my communication skills to compensate for any deficit that the person I’m communicating with may have, whereas you can’t do that when the shoe is on the other foot.

  • I simplify my interactions to a basic level – when I’m speaking in English, I fluff it up a bit – I choose words that provide better descriptions and tailor words to the audience (e.g. by picking words and phrases that I would anticipate are in the vocabulary of the person I’m talking to, and avoiding words that are unlikely to be in their vocabulary – such as saying bolus to another speech therapist, and mouthful of food to virtually anybody else, or saying snog in England, winch in Scotland and pash in New Zealand), as well as add in extra information to provide more context and clarity. When I’m speaking to someone whose understanding of English is rudimentary, the communication exchange consists of the bare minimum necessary to get my message across – I don’t bother with adding in all those other things as it’s likely they may be misunderstood.

  • I settle for misunderstandings – I asked for a cheese and tomato sandwich and you brought me a cheese and ham one – I can’t really send it back and claim you got it wrong can I? You were doing me a favour by speaking another language and being a helpful communication partner – even though you made an error, I feel responsible because I wasn’t able to make my message clear in your language. I chalk this one up to a communication breakdown and settle for a less than ideal situation.

  • I feel less intelligent – I didn’t step off the plane stupider than when I boarded it at Heathrow. But it certainly feels like it. All my thoughts, opinions and knowledge are locked away in my head just the same as it always is, but most of it can only get out in English and the remainder of it in French – neither of which is particularly helpful in Austria. You feel a lot lower in the social order when you cannot communicate in the same code as everybody else – the three-year-olds around you are in a better position than you because what use is having lots of thoughts and ideas if you can’t get them out? Other people also have no idea of your intellectual ability when you can’t use their code – they quite simply can’t assess you, and being unable to communicate using the language of your environment often is met with unconscious bias that you’re not that smart (and to be fair, the English speaking world isn’t when it comes to foreign languages) – sadly, the same wrong assumptions are made about people who just can’t communicate in the same way as you and I whether due to disease, accident or injury.

  • I feel exhausted – As fun as travelling is, and as exciting as it is being immersed in another language, having to exert that much more energy to understand and to be understood is tiring! For me, I know that next week I’ll be back in England speaking my native language, so I can enjoy the moment and the challenges of being in another country with a different language and see it as a new and exciting experience, but if everyday was met by constant inability to communicate, I would feel pretty worn out, and would likely employ far more avoidance strategies and become more recluse.

Everyone should at some point immerse themselves in a country where they don’t feel strongly proficient in the language to experience what it is like to have a communication difficulty. Then, the next time you encounter someone with a communication difficulty, you can appreciate how frustrating every day is and how anxiety-provoking every interaction is. However, you’ll also realise how with a bit of kindness and understanding on your part (like with the Austrians who so willingly and happily help me out by speaking English) you can make life that bit easier and more inclusive.

Invitation to an evening of Wonder

Wonder Trailer
Essential Details

When: Sunday 03 December 2017 – 5.30pm-8.00pm
Where: Reading Cinemas, The Palms, Christchurch
What: Screening of the film Wonder preceded by Kenny Ardouin’s personal journey.
Who: You, your friends and family – places are limited, so be in quick though and book your tickets to avoid missing out!
Ticket price: $11 (+ eventbrite booking fee) – this is cost price.
Book tickets now: https://www.eventbrite.co.nz/e/an-evening-of-wonder-tickets-38675340986

Questions/queries: Email hello@kennyardouin.com

Listen to the interview about this event on Newstalk ZB – 19 Oct 2017.

As those of you who know me will know, over the past 26 years, like everyone else on the planet, I have faced some challenges. There is no doubt that having been born with cleft lip and palate has played a substantial part in defining who I am today.

Many of you reading this will have stood alongside me as I’ve navigated this journey at its various stages – at times where I was adjusting to the medical realities of the condition, at times where I was facing the challenge of trying to fit in when I was born to stand out, and at times where I was coming to terms with the emotional challenges that this journey has presented.

In 2012, a great book called “Wonder” by R. J. Palacio came out, and follows the story of Auggie Pullman, a 10 year old boy living with Treacher Collins syndrome and a cleft palate. The story follows him as he starts a new school where he faces bullying and betrayal in his quest to fit in and make friends – a story that anyone who has a facial difference will be able to attest to. The story provides hope and encouragement, and resonated well with me – in fact, since the book came out in 2012 I’ve ended all my public engagements and presentations with a direct quote from the book.

Later this year, Wonder is being released as a film, and I have organised a special screening at Reading Cinemas The Palms to share this moment with you.

Earlier in the year, I had one of the privileges of my life to deliver the keynote speech at the UK Cleft Lip and Palate Association conference, where I shared aspects of my journey that I have since realised, I have not shared with those closest to me – partly because it’s difficult to articulate, and partly because I’ve felt that perhaps people wouldn’t understand. On this night, prior to the start of the screening of Wonder, I am going to take a few minutes to share some of my thoughts from my own journey with you.


Politics has no “opt out” option – why you need to vote on Saturday

Politics is exhausting. The lead up to an election is tiring – for the politicians, the volunteers on the campaign trail, for the journos and for the public that have a lot of information thrown at them to digest. Politics polarises people, creating tension in workplaces, deathly dinner stares within families, and awkward silences when that sweet elderly lady you’ve seen every week at the supermarket declares that she is yet another sycophant to a politician you felt had their hey day before you were even old enough to vote. With all of this going on, it’s not hard to see why you might be tempted to “opt out” of politics.

However, here’s the reality – you don’t get to “opt out” of politics – politics directly affects so many areas of our day to day lives, by not voting the only thing that you are opting out of is having your hopes, ambitions and values for New Zealand actually mean anything. For that is what a vote is – it’s a statement on the direction that you want to see New Zealand headed. Every party has different ideas of where they want to see New Zealand and different goals for how they are going to get there, and how they are going to spend your money doing it. You wouldn’t donate $10,000 a year to causes that you don’t believe in, so don’t idly sit back and abstain from voting or you run the risk of a government that you didn’t vote for determining your future and spending your money doing it.

I have heard many people in the lead-up to this election saying “nobody is doing anything for me.” To make that statement is to concede that you are uninformed. There is someone out there who is doing something for you. Think about it – if you get sick, who do you best trust to look after you with adequate state-funded healthcare? If you become unemployed, who will help support you until you can work again? If you have children, who is going to support you to have a work-life balance that is conducive to raising children? If you are approaching retirement age, who is going to ensure you have a healthy, comfortable, affordable retirement? If you breathe air or drink water, who is going to make sure that they are around for generations for come? Think outside your immediate silo at this very moment in time, and look at the bigger picture. If you really feel that nobody is doing anything for you, then you’re not sleeping in a car, not wondering where the next meal is coming from, not being discriminated against, not battling a health condition, not struggling to function in your daily life alongside a chronic depression, so it may pay to stop and be grateful for that. Because for so many of your fellow New Zealanders, these things are a daily reality. Try and take a different perspective and put yourself in someone else’s shoes. Do these issues sound like boring politics that is a point scoring game between the blue team and the red team in Wellington? Or do they sound like real issues that impact on the lives of everyday New Zealanders?

I would argue it’s the latter, and it isn’t just something that we should be interested in once every three years – although that is our greatest opportunity to put the people in power who we believe are best placed to spend our money to tackle the issues that we feel are the most pressing, and remove any from power who we think are not working towards the New Zealand we want to be living in.

Young people especially, need to vote. There is a lot of apathy, “my one vote won’t make a difference”. Well for a start you get two votes, and they both make a difference. If “couldn’t be arsed to vote” was a party in the 2014 election, it would have been the leading party. That’s right – more people who were eligible to vote didn’t vote than voted for the National party at the 2014 election – i.e. all the people who said “my one vote won’t make a difference” would have made the biggest difference. Don’t let the same be true this Saturday. Not voting is accepting the status quo, and you are so much better than accepting the status quo for the sake of not being bothered. By all means, do your research, and come up with your own conclusion that the status quo is (in your opinion) the best option and then vote to keep the status quo – but don’t just vote for the status quo because you can’t be bothered to investigate the alternatives. Doing independent research is so important – don’t believe the scaremongering you hear. As a journalist who believes in presenting the facts with honesty and integrity, I am saddened to see how many people have accepted and not questioned the National party’s outright lies (which is what they are – any political commentator will agree) that there is a $11 billion hole in Labour’s fiscal plan – this is nonsense and is misleading.

In our country we have a freedom to think for ourselves and vote without fear of consequence. When you have this freedom that others can only dream of, it seems criminal to not avail yourself of the opportunity, or worse, to let yourself be brainwashed by statements presented as fact which are anything but.

As a current affairs presenter, you cover events every week that will get better or worse on the basis of political decisions made by the people we elect into office – it’s naive to think politics doesn’t affect daily life – here are just a few examples of issues I have reported on in the last two years that despite the great work being done by individuals and community groups, are at least to some extent impacted upon by decisions made in the Beehive.

It is not difficult to see how many different areas of our lives that we may not immediately think of as political are so delicately intertwined with politics. As you can see, you cannot merely opt out of politics, all you can do by not voting is merely mute your own voice on the issues that affect you and those closest to you.

Take an hour before Saturday, watch a debate, listen to a podcast, read some policies and articles. Discover whose ambitions align with yours, and then get out there and make an informed vote on Saturday.

Not sure who stands for what?

Catch up with the Plains FM/CTV live debates on demand here (audio only)

Catch up with the Plains FM/CTV live debates on demand here (video)

Interviews with Jacinda Ardern, Nikki Kaye, Paula Bennett, Marama Davidson, Duncan Webb, Louise Upston, Ruth Dyson, Russell Norman, Fletcher Tabuteau and Annette King can be found in the podcast library.

A day at Sachsenhausen, Germany

There are some times in life where you do something, or see something that leaves an impression upon you, one which you know will stay with you forever. I have had a fascinating few days so far in Berlin, Germany.

I have always been fascinated by history, I think it is so important to understand the past in order to understand the present and to shape the future, and naturally I have read and studied a lot about Berlin, but seeing it for myself definitely gives a new perspective.

Towards the end of World War II, Berlin was largely destroyed – 80% of buildings were destroyed, and the other 20% badly damaged. The evidence of this war is still here today, as evidenced by the predominantly newer buildings, as well as the pre-war ones with off-colour masonry replacing war-damaged masonry, as well as thousands upon thousands of filled-in bullet holes.

There is historical significance around every corner of this city – be it the platz (square) outside the university where book burnings occurred under a sickeningly accurate quote from 1820 “He who burns books will later go on to burn people”, or this car park here.

This innocuous looking car park is where Hitler committed suicide by shooting himself and taking cyanide (as he had what was later believed to be Parkinson’s disease, and was not convinced his gun firing would be accurate). No, he didn’t kill himself in the blue Toyota Yaris, rather in the Führer bunker which to this day lies 3 metres beneath this car park, inaccessible to everyone. Why? The German government fear that if they made it a free museum, it would bring people to the city and they would spend money here, and Germany does not want to be profiteering from the holocaust.

There is however one prominent and impressive memorial and museum – the “Memorial to the Murdered Jews of Europe”. 

This is located right next to Germany’s parliament building and tells the honest and sobering story of the atrocities committed by Nazi-led Germany – graphically detailing the murder of 11 million people from 1933-1945. As horrific, and difficult it is to visit this museum and experience this memorial, I found it to be incredibly worthwhile. I think it demonstrates that Germany acknowledges and takes responsibility for its past, and that it has learned from it – the fact they used the word “murder” in the name shows acceptance of what it is and that there is no justification for what happened. You get the sense that a neo-Nazi uprising is incredibly unlikely here – they are telling a cautionary tale to the rest of the world and urging no one else to make such a terrible decision.

This quote in the museum is particularly telling – we like to think that we would never see an event like the holocaust again, but the fact it happened once, doesn’t put it out of the realms of possibility to happen again.

Last week in Amsterdam, I visited the Anne Frank house where she wrote her famous diary, and being in the spot where she hid for two years before being arrested and sent to a concentration camp, was surreal and very moving – “may her would haves, be our opportunities”.

Anne Frank’s story was one of a countless number of people’s stories. Today I visited the Sachsenhausen concentration camp about an hour outside of Berlin, and it is an experience that will stick with me forever. It is one thing to read a book or see a documentary, it is quite another to stand on the spot where history took place and contemplate what happened there at a time that is still within living memory for our grandparents’ generation. It is not fun, but it is important and incredibly worthwhile – for all of us who are European, this forms such an important part of our history, and I would strongly suggest you go – the reason it is there is not for war buffs and historians, it’s there to provide education and to try to ensure something like the holocaust never happens again.

It was a strange feeling, taking the train through the woods to get there – the same train that over 200,000 people would take to be taken to the camp. The camp isn’t in the middle of nowhere either, it is in a little German village, with houses lining the street right up to the camp – nice houses, well maintained with immaculate gardens – these immaculate houses of 2017 were originally built by the camp prisoners to house the SS.

Standing at the gates here, so many others stood in front of – that is, if they weren’t shot, beaten or tortured to death first. The words on the gates read “Arbeit Macht Frei” which is German for “work sets you free” – a cynical joke as work led to your death, and only in death would you be free.

Walking around the grounds, you get a sense of just how big this operation was – 200,000 Jews, gay men, communists, “asocials”, foreigners or whatever other “crime” someone had been accused of would end up here. 40,000 were murdered in the place I was standing, and thousands upon thousands more would die through the labour and terrible conditions being imposed upon them. Out of respect, I did not wish to photograph or post the killing trench or the crematorium ovens which were used, but the imagery of bodies everywhere should not require a photo of the actual equipment used.

I think it is also important to remember, that Germany was a victim of the Nazi regime too. Sure, they were responsible for the holocaust, they were responsible for WWII, but let’s not forget that there were many German citizens who were the victims of genocide, in addition to countless others from the rest of the world.

For me, as a European, it was important to see this site, to make sense of my own history, and the history of my family and friends – who hail from all over Europe.

I feel that Germany has learned from this and would be unlikely to let history repeat itself (of course, the end of WWII essentially started the Cold War which saw Germany and Berlin divided by the Berlin Wall and the Iron Curtain – oppression in the east, and freedom in the west – right up until 1989, so this is all very fresh in Germany’s memory).

Although the British Empire has never committed genocide on a scale such as the holocaust, they too have done some terrible things over the years, yet are not so open to talking about it and acknowledging mistakes like Germany has. The United States also have committed atrocities for which they still don’t take responsibility. Acknowledging this, is the first step to stop it happening again.

As you walk out of “Station Z” – the extermination part of the camp as Sachsenhausen, there is this quote on the wall from a survivor of the camp:

We must remember this. Think about yourself – if this was the 1940s, would you have ended up here? I would have done; as someone who had been born with a disability, the Nazi regime would have wanted me eliminated from the gene pool – you can think of many examples of either yourself or people you know who would have faced the same fate if they were born in a different era.

The question I posed to myself today as I appreciated the freedom that I had to walk away from the gates, “Could this happen again?” and sadly I think the answer is yes, it could. Humanity as a whole has not learned yet – some of the American President’s current policies are scarily similar to some of Hitler’s early policies. The crisis in Syria, concentration camps in North Korea, the killing fields in Cambodia show that we still haven’t learned the lessons of the past.

For me, today has been a pretty challenging, informative day that will stick with me for the rest of my days. This isn’t about whether you’re interested in history or not, this is about understanding the world you live in.

I thought I would end this with a fitting quote from 20th century Spanish-American philosopher George Santayana;

Those who cannot remember the past are condemned to repeat it.

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: https://www.changingfaces.org.uk/wp-content/uploads/2017/05/DITUK.pdf – 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.

Decision to provisionally cancel planned United States visit in 2017

As many of you know, I have an upcoming trip where I am scheduled to visit the United Kingdom, continental Europe, the United States and Canada. This trip was booked in September last year, long before Donald Trump was elected President of the United States.

Following his election, like many around the world, I have observed closely his actions with every expectation that despite his campaign, once in office, he would respect the sentiment of the American people and uphold a level of international co-operation and not attempt to revoke even the most basic of human rights.

Sadly, since he took office, we have seen executive orders signed that serve to detrimentally impact people in the USA and further afield. Last week, I successfully procured my authority to travel to and enter the United States, however within hours of obtaining that, Donald Trump issued this executive order which prohibits certain people from entering the USA on nothing other than the basis of their nationality. Such discrimination has been illegal in the United States since 1965.

In a quote from the Executive Order, Trump states “In order to protect Americans, the United States must ensure that those admitted to this
country do not bear hostile attitudes toward it and its founding principles. The United States
cannot, and should not, admit those who do not support the Constitution, or those who would
place violent ideologies over American law. In addition, the United States should not admit
those who engage in acts of bigotry or hatred (including “honor” killings, other forms of
violence against women, or the persecution of those who practice religions different from their
own) or those who would oppress Americans of any race, gender, or sexual orientation.”


I believe the very premise of this Executive Order does not support the American Constitution, engages in an act of bigotry, promotes feelings of hate, and despite his statements to the contrary, persecutes those who practice a religion different from that of Trump, and most certainly oppresses people on the basis of race given that is the criteria on which people find themselves denied entry to the USA. Of course I respect the USA’s right (and obligation) to protect its people and border by ensuring that those who visit are of good character, but that is not what this policy achieves – the vast majority of people turned away under this policy will be upstanding citizens of the world.

Despite significant opposition from a large portion of the American population, condemnation of the policy from other countries, American officials and judges, the White House insists that the policy stands, at least for the time-being.

Such a discriminatory policy is at insurmountable odds with my personal beliefs, values and inclusive way of life, and therefore I am unable to avail myself of my right to visit the USA when people from other nations who share the same peaceful beliefs and values as myself are refused entry to the USA on the basis of nationality. I refuse to spend my money in a country whose government believe that this is acceptable practice.

Therefore, in a decision that I have not taken lightly, I have provisionally cancelled my plans to visit the United States in 2017. I would like to be clear that I am not cancelling due to any perceived risk to my safety in the USA – at no time, have I felt that there is an imminent risk to my safety, and I still fully intend to visit all other countries on my trip. Of course, should Donald Trump/others in the government reverse this decision and review his stance on blanket immigration policy in the near future, then I too will also reverse my decision – after all, I do want to visit the USA! However, should that not occur, I will not visit the United States, and the time that I was due in the USA, I will spend extending my visit to Canada – a country that understands its role in the 21st century in a global community.

I do not expect my decision to carry any influence or have any capability to alter Donald Trump’s perspective, but for me as a principled individual – like so many of us around the world (including the USA); it is important to me that I make a stand as an individual to demonstrate my opinion that this is not okay, and is a sad case of history repeating itself. Perhaps if enough people take a similar stand, the message will become even harder to ignore.

I hope to be able to review this decision in light of more sensible legislation from the President of the United States in the near future.