Translator: Heather Etchevers Reviewer: Claude Almansi
Hello.
Tonight I will speak about a way of looking, but not just any look;
about the kind of look directed at those who look physically different.
That look of surprise, curiosity, and sometimes fear
about seeing something unsettling.
I think I have a small problem here...
So, during the time of this talk,
you'll be in someone else's shoes.
imagine yourself as someone who has a visible handicap,
and I will be your guide for this experience.
Why would I propose such a journey?
In fact, this way of looking at people with visible differences is vital
because it can induce shame about their physical condition
and a lack of self-confidence as well.
So, tonight, I will use an example of a rare disease, called
the giant congenital melanocytic nevus.
It is a skin malformation
which develops before birth
and consists of giant moles
that can cover up to 90% of the surface of a child's body.
The nevus can affect the face, the body, the limbs.
Its incidence is estimated in one in 20,000 newborns
and its 'garment-like' variety one in 50,000 newborns.
There are three types of complications.
First, an increased risk for pediatric malignant melanoma,
which is a very aggressive type of skin cancer;
second, an increased risk for severe neurological impairment
because the nevus can affect the body at this level;
and third, psychological distress
since these children often suffer from stigmatization and exclusion.
So, why do I talk about the giant congenital melanocytic nevus (GCMN)?
Because I, myself, was born with one of a considerable size,
a rather similar one to that modeled by Yulianna, whom you see on the photo.
I want to thank her for having lent us her photos with enthusiasm
and to all the other people you will also see during this slideshow,
since the message of this TEDx is very important to them.
As for me, I underwent skin grafts, unlike Yulianna,
and we started when I was 5
and kept on until I had no more healthy skin to graft.
Thus, I still have a lot of my nevus.
Sincerely, though, the hardest part of presenting these symptoms
was having to deal with how others looked at me,
far beyond any physical suffering or consequences of surgery.
I also want to point out
that if you think that a nevus located on one's face is difficult,
keep that thought to yourself!
Just close your eyes for 30 seconds
and imagine you have a nevus like that of Yulianna,
and then having to go into your bathroom at home, like you do every morning,
and having to look at yourself in the mirror.
Or remember the last time
you were at the beach with your friends or family.
I think that after this small mental exercise,
you'll realize that there are no "good" or "bad" nevi
like people often try to tell me.
This is why I feel like I am entitled to talk about this topic
and share my thoughts and journey with you.
In fact, over the last few years,
I have been involved with patient advocacy groups
and I realized
that there is little change in the way the world looks at us.
We leave patients, families,
and even professionals, bereft of tools.
The current "solution" is:
if more people know about the disease,
affected children will be accepted as they are,
because what is familiar is less scary.
Personally, I think that means educating 7.2 billion people,
which is a bit difficult;
I feel like Don Quixote tilting at windmills.
I asked myself how can we in fact go about this in a different way?
How might I, with my nevus,
adapt to how others see me
so that it is not so hard,
and I might better adapt to these situations
which make me so uncomfortable?
The question was then to find out whether tools and techniques existed
that I could make use of.
I often compare this idea to being a doctor - because I am one -
who, in a crisis situation, has to just concentrate on technique
instead of getting overwhelmed by emotions.
One might be able to use the same psychological approach here.
And yes, in fact, such strategies exist!
I discovered them 4 years ago.
They were developed in English-speaking countries.
They're pragmatic and simple to use.
When I present them, usually to parents
they all have the same reaction I did.
They say, "Of course! Why didn't we think of that earlier?"
When I discovered them,
I remember wishing I had had these tools when I was younger.
The problem in France is they are not yet very developed.
This is why, together with Professor Vabres,
Loïc Ballet and my husband Philippe,
I decided to start a non-profit advocacy group, ANNA,
made up of doctors and psychologists
but also artists, families, and other volunteers
to develop these techniques.
I will present three approaches tonight
to show you that they're quite practical.
The first is called "STEPS,"
and is used to work on a few points at once
and was invented to help Phoenix Arizona Burn Center.
It's a rehearsing practice for meeting new people.
We get ready,
we tell yourselves we do want to meet these people,
and that is positive thinking.
We are going to meet these people, we want to do it,
we are going to do it and do it well.
"Tonight, I am going to give this TEDx; I'll do it, and I'll do it well."
I also work on my tone of voice.
I try to seem enthusiastic, friendly, and firm.
Body language is also important.
I have my shoulders back, head up high,
and I look self-confident.
I'm actually petrified.
(Laughter)
Then, there is how you look at others:
it's very important to teach children to look other people in the eye
even if only for 30 seconds -
look at them straight on so the other person can move on.
There is so much going on in a glance; It's really important.
The last point is to smile - I have a hard time with that -
but you must smile to seem accessible and friendly,
and interested in interacting with the other.
The second technique that I'll describe here
is quite important for our pathology in particular.
It's called "Explain, Reassure, Distract."
It was invented by an English advocacy group called "Changing Faces."
It allows you to guide people's curiosity.
Because curiosity is healthy and natural.
The day you really get that, you can then accept it
and you're more willing to guide it.
To explain mains I explain my difference clearly and concisely.
"It is a giant congenital melanocytic nevus."
I use the technical term - even at age 5, kids can learn precise words -
and that reassures the person facing you
that you clearly know what you're talking about.
The next step is to reassure,
"Don't worry!
It doesn't hurt, and it's not contagious.
Look, you have a small mole, too.
Mine's the same, just a lot bigger."
Then you move to the next step, which is to distract.
With very young children, four or five-year-olds, you tell them,
"Offer to play with the other kid like this:
'Let's go to the slide' or 'Let's kick that ball around'.''
For older children,
it helps to advise them to bring up something positive about the other,
so the other person is now the center of attention.
After all, what people like best is to talking about themselves.
So this strategy makes you seem super nice and bingo! There you are.
The final strategy I want to present to you this evening
is an approach that helps us
react in stressful situations that you've identified ahead of time,
that are predictable.
I will give you three examples.
First one: you're at the beach,
and someone is staring at you.
It's probably happened to everyone at some point.
It's very unpleasant.
So, you can now imagine and understand right away
what is going on in the other person's mind.
First, she's surprised, puzzled, even afraid.
In our case, there's usually some disgust mixed in.
In these situations, I must confide that all you really want to do
is bury your head in the sand or run away.
But that's not a solution.
Here's what works:
you sit up straight, you stare back at the other person.
At that point, she understands right away
that you already don't much appreciate her behavior,
and then you smile.
That destabilizes her;
she's the one who blushes, looks down, and you've won.
Second situation:
you're queuing at a market with your child who has a nevus on his face or head.
and that's often when you get random remarks.
At such times, you just say,
"It's only a birthmark, it's not catching, thanks for your interest."
The "thanks for your interest" is a clear way of saying,
"I've satisfied your curiosity, that's enough."
Of course, you always do encounter slow people who keep insisting.
At such times, you can tell them,
"I don't want to talk about it today, maybe some other time."
And then you should just concentrate on your own day ahead,
on whatever you must do, and move on.
Third situation: we have to talk about it,
it's teasing.
People who tease or bully are inevitable.
It's very important to prepare your child for these situations
so that she has some ready answers.
Caught by surprise, she may not find a good reply.
She must really learn how to reply firmly but not aggressively;
this is very important.
Another important point
is to teach your child that she has her pride and dignity.
She must not let others order her around nor must she accept anything.
You must encourage her to ask for help
from an adult with authority in that very moment
in order to put a stop to it, early on,
because, unfortunately, when bullying gets to be a habit,
it usually gets worse.
The adult must be someone who can stop the situation
firmly but also kindly
so that it doesn't turn back on the child.
Now, I'm going to show you a slide I like a lot,
because it's "advice" from people with good intentions,
lots of good ideas,
but who don't know what they're talking about.
First: you can't ignore the problem.
You often hear teachers say,
"I'm going to ignore her condition and treat her as if she did not have one."
But she isn't stupid,
and she knows she is not just like everyone else.
She needs she can talk about being different when needed,
and it's important, because, first, if you act like there's nothing,
you lose all credibility with the child,
and then, you might reinforce her shame about her physical difference.
So, it's not a good idea to ignore it;
you must keep a dialogue open.
Second point - I love this one -
often made by people who think they're being very deep
and say, "Don't worry, only what's inside counts."
Yeah, that's it.
Well, the outside is super important, too.
You think you're reassuring the child,
but as he grows up, as he realizes
that he must also make do with his physical appearance,
that he must put forward his qualities, his strong points,
it will hurt that much more.
It's not the right solution.
Finally, don't make a huge drama about it,
or downplay the situation.
The child should not be locked into his difference.
He is so much more than his nevus.
It seems obvious, but he shouldn't see his life through a nevus filter.
It's a great danger.
He has many other qualities
- of course, this is part of his person -
but he needs to be empowered to move beyond it
so that he can live a normal life.
Now, I'd like to tell you that life is only enriched
by the quality encounters it offers throughout.
So, how others see you is fundamental.
My own life has been fulfilled by meeting the extraordinary people
who are everywhere you look.
Of course, I think right away of those most important meetings
that were those with my husband, with each of my four daughters,
but my very first encounter obviously took place on October, 28, 1967,
in that maternity ward,
where I met my parents,
who, against all apparent odds, believed instantly in me and my future.
I think on that day, they were the only ones.
I can imagine what the midwife thought
as well as the rest of the medical team.
I think they would never have bet a crooked penny on my future,
and I would love to meet them again today and tell them all,
"Hi there! It's me! Turns out, life is beautiful;
it's magnificent, and frankly, it's really worth living."
What made the difference is
my parents immediately saw me, instead of staring at me.
So, I want to thank them tonight, because they're here in the room.
I'm here before you thanks to them,
so, a huge thank you, Mom and Dad.
Next, I would like to acknowledge
all those amazing parents whom I've met
through the patient advocacy groups ANGC and Naevus 2000.
I couldn't give this talk without mentioning Hanane Douibi,
an amazing mother, who makes me want to move mountains.
So, to all of those parents, I want to say:
believe in your children,
believe in yourselves.
You are the best experts on your children.
To you, my audience, I'd like to say:
don't be afraid.
Your curiosity is not what's embarrassing.
Change the way you look at people,
so it stays the kindest and most natural look possible.
I wish you all a beautiful metamorphosis.
And yes, we can!
(Applause)
Thank you.