I’m Only Human on the Inside

Kenny Ardouin

Presented as the opening address at the Cleft New
Zealand AGM, Tuesday 26 May 2015, Auckland, New Zealand

Kia ora, Haere mai, welcome to the Annual General Meeting of Cleft New
Zealand. Cleft NZ celebrated our 35th anniversary last year, and boy
have we come a long way. In September this year, I will celebrate my 10th
anniversary with the organisation, the last three of those as the CEO. Looking
back now, it is amazing how far this organisation has come even in those ten
years. The world also has changed in that time and I too have changed a lot in
that time.

For a number of you, perhaps I was your first interaction with Cleft New
Zealand – I have spoken to literally hundreds of people over the years at
various stages of the journey and have grown up with some of you as you are
going through your journey. I have always endeavoured to provide people with
reassurance but never bend the truth or make any promises. I was surprised
recently when a new parent to our organisation had watched a couple of my talks
online and said to me “but you’re not like most people. You’re a strong,
confident young man. My son might not find it as easy as you.”

It was at this moment, that I realised that I clearly have not shared
enough of myself in recent times. We are all shaped by our experiences, and I
am certainly no exception to that. This has not been at all easy. Feelings are
a topic that are bandied around a lot nowadays, and people get very scared when
people start talking about feelings. We tend to shut people out when they show
emotion – we saw this week Hillary Barry break down when reading the news as
she learnt that her colleague John Campbell was leaving TV3 after having worked
together for many, many years – some people reacted with empathy, whilst others
deemed such a display of human emotion to be unprofessional. Well, like all of
you, I am human and I experience the same range of emotions that you all go
through.

Yes, I have got up year after year and provided words of encouragement
to people who are on this journey, words which I continue to stand by, but I am
not going to stand up here and pretend that it’s all rosy. In fact, the last
year of my journey with jaw surgery and the recovery, a recovery which still is
ongoing, has brought the fact that I was born with a cleft to the forefront of
my consciousness everyday with no way that I can ignore it if I tried. I am not
going to pretend that I would not have preferred to not have to go through this
experience and I am not going to pretend that from time to time I don’t grieve
for the other life that I would have lived if things had been different. Just
because I don’t do these things in public, it does not mean that I do not
understand these feelings – I totally do, and bloody hell, do we need to talk
about this. These feelings are not unusual, are not to be ashamed of, we all
have had them – just as everyone who is human has. Yet we don’t talk about this
as it is seen as a sign of weakness. Yet to me, expressing feeling and emotion
is a sign of someone who is strong and courageous. Sure, if I had my time over
again and was at the point in foetal development and I had a choice to make as
to whether to develop a cleft or develop ‘normally’ – whatever ‘normal’ is
besides a setting on a washing machine – I would pick the latter, as I’m sure
most if not all of you would. However, I don’t have that luxury, and I accept
that. I never will have that other life that I grieve for from time to time. So
I look at the life that I’ve got, and how to make the most of this one as it is
the only one I’ve got, and there is a lot that is good about it.

As I say, we are all shaped, for better or for worse, by our
experiences. Had I not developed a cleft in utero, I most certainly wouldn’t be
standing here in front of you as a result of the skills that I have developed
along the way and just 6 months away from graduating as a speech-language
therapist having met some incredible people along the journey who I will
cherish and remember our experiences with fondness for the rest of my days. Had
I not developed a cleft, maybe I would be CEO of a multi-national conglomerate,
or, more likely I could be bumming around with no clue what I want to do with
life. Many people mention how being different robs them of a lot of their
confidence – a perception with which I’d tend to agree. Sometimes people
mention that they feel that they have to try harder than those around them. I
identified with this when I was in high school – I felt as though if I was to
make a favourable impression with girls that I would have to do something a bit
extraordinary. So I began putting myself out there a bit more at school and
volunteering for various opportunities – whilst this never led to the romance
that I felt that I was longing for at that tender age – it did lead to me
finding my place on the Board of Trustees as the Student Representative at age
14, an office I held for nearly four years, and giving speeches to a thousand
people at once, and receiving the confidence boosts that events like that
provide – now if that is not reclaiming that confidence, with interest
compounded on top, I do not know what is. After that, for a couple of years
before I became CEO here, these experiences gave me the confidence to work for
a Christchurch radio station as their afternoon show host and then was promoted
to breakfast immediately following the Christchurch Earthquakes – interviewing
people such as the mayor of Christchurch, EQC, and I even interrogated John Key
on my programme – my desire to recapture some of that lost confidence has led
to me having had an amazing set of experiences for someone who has just turned
24 – if I’d been that normal setting on the washing machine I doubt this
would’ve happened for me. And it really does go to show that there is little
you can’t do if you put your mind to it.

These stories are not unusual to come out of our community – there are
some amazing people out there doing some incredible things, and in my darkest
moments, I reflect back on things such as this and realise that there are many
people who would trade their circumstances too to stand in my shoes.

Whilst romance remains something exciting for me to experience in the
future, I have definitely experienced love. Opening up with people about how
you are feeling, makes you realise just how much love is out there. Not
necessarily just romantic love, but love from your friends, your family,
organisations such as ours, from humanity at large, the love that comes from shared
experiences. Experiences such as being in hospital last year, not only make you
appreciate how much love others have for you, but also how much love you have
for those people too. I made a point this year telling those people who were
there for me during that difficult time exactly what that meant to me, far more
than they’d realised. That made them feel special and heck, sharing moments
like that with one another keeps us afloat doesn’t it?

Smile, demonstrate love, compassion and be kind, for everyone you meet
is fighting a great battle and remember that we are all far more similar than
we ever will be different.

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