Redefining beauty | Rick Guidotti | TEDxEast

This talk was given at a local TEDx event, produced independently of the TED conferences.
In this engaging pictorial talk, Rick Guidotti takes the audience on his journey of redefining beauty for the masses. As an award-winning fashion photographer, Rick has spent over a decade working with advocacy groups to transform the perception of individuals with genetic differences through photography. He is the founder of Positive Exposure, an arts, education and advocacy program that works with individuals with genetic differences. Rick shares that his ultimate goal is to "embrace our shared humanity and to celebrate the richness and beauty of human diversity."

I'm a fashion photographer.

and this is the kind of work
that I used to do in NYC.

My studio is here, and I also worked
and lived in Milan, Paris, and London.

Always told though who was beautiful.

I was always forced to work

within the parameters
of the beauty standard.

I was told who the model
of the moment was today,

who she is going be next season,

and how it was going to keep changing

But I follow it, bought it
hook line and sinker.

I worked a lot with the house
of Saint Laurent in Paris.

So it's a lot of things that I did.

I was always told though
who was beautiful.

And I found it frustrating because
I'm an artist, I see beauty everywhere.

But I had to listen to somebody else
tell me what and who was beautiful.

It was just mind boggling,
and so frustrating.

Every single booking I would do,
I was always told

who I had to photograph,
who I had to shoot.

It drove me insane.

I was leaving my studio one afternoon,

after being really frustrated
by a major casting,

and I saw this kid waiting for
a bus at the corner of Park Avenue,

And she was beautiful.
She had long white hair and pale skin.

She had a genetic condition
called albinism.

She didn't have pigmentation
in her hair, her skin, or her eyes.

She was stunning.
and before I could say:

"I have to take your photograph,
you're amazing,"

the bus came and she took off.

And I'm glad because she was 12,
and I'd be in prison at the moment.

But she was stunning.

I ran down to the closest
Barnes and Noble

to find anything I could
about this condition.

And I found photographs like this.
Photographs of sadness.

Images of a bright red eye.

This girl had beautiful,
blue eyes, not red eyes.

And I found images of kids in Africa

who were surrounded by tribes
pointing spears at them.

And people in hospital beds
looking forlorn.

These were images lacking humanity.

They were so different from
the stunning kid that I saw.

Then I started going through
these medical journals

and started finding other photographs.

Of kids up against walls
and doctors offices,

with their eyes covered in a bar.

These were images
of sickness, of diseases.

There was no humanity in these images.

And I kept finding these images,
I was bombarded by them.

I was so frustrated by it.
It was horrifying.

And then I started doing more research,

and started to find circus photographs
of "the albino family,"

and then other images,
movie references, from the cinema.

This is "Powder".

He had albinism because his mother
was struck by lightening

when she was pregnant with him.

"The princess bride," "Matrix reloaded,"

even most recently, "The Da Vinci code".

There is an associated
visual impairment with albinism,

most people with this condition
are considered legally blind,

although there's always vision.

But he was this evil albino

driving around Paris at night
shooting at people,

But he won't be hitting anything
because of his albinism.

(Laughter)

I thought this is insane.
So I contacted NOAH and said, "Hey,"

- NOAH is the National Organization
for Albinism and Hyperpigmentation,

it's a support group for people
with this condition and their families -

I said: "I'm a fashion photographer.

Let's show the world the beauty
of albinism. Let's take photographs.

This is amazing,"
and they said, "Get lost."

I'm pretty persistent,
so I kind of kept going after them.

And they made it clear to me about
their fears of exploitation.

Every time there was a magazine article
about this condition featuring a kid,

it was always a story about a victim,
or exploitative, or sensational.

I thought: "Well, OK then, let's partner.
Let's make sure this doesn't happen.

Let's work together," and they said OK.
That was pretty amazing.

The first kid came into my studio,
the first that I photographed.

She walked in. She was beautiful.
Long white hair, stunning!

I thought: "Oh, she is gorgeous."
but she walked into my studio like this:

shoulders hunched, eyes down,
one word answers, no eye contact.

She was tortured her whole life
because of her difference.

I thought: "Oh, this kid is so fragile,
she has zero self esteem."

I thought: "What am I going
to do with her?"

I said: "Out of respect for her, I will
photograph her like I would anyone else."

So the fan went on, the music went on,
I grabbed a mirror next to me on the set,

and I said: "Christina, look at yourself.
You are magnificent."

And she looked in the mirror,
all of a sudden, she saw what I saw.

She went from this
(hunches over)

to that (straightens up)

(Laughter)

There she is. That's our Christina.
She's amazing!

(Applause)

I knew instantly that this kid
was now an ambassador for change.

Right in front of me, she transformed
into this powerhouse, this tornado

that changed the way
her community sees her different.

So these first images
were in Life magazine.

This is Charlotte,

who's actually the president
of NOAH At the time

she thought: "We don't like
this idea of the photographer."

but we put her on the cover
of Life and an inside story,

and she loved the project after that.

This was a 5 page spread in Life in '98.

We used the same images
for many other photographs

and lots of other magazines worldwide.

Here is Christina in another "8" issue,
[Lauren] from Washington, People magazine.

I started getting calls from people
everywhere in the world.

It's pretty amazing.

People would say: "Could you come

and help us start an organization
in Africa or in New Zealand?"

And I said, "Sure, let's do it."

I went to this
one conference in Philadelphia,

and this gorgeous mom came up to me
and said: "My son Randy is stunning.

But he's so shy. He has no self esteem."

"Can you photograph him?
Would you show him that he's not alone?"

And I said, "Sure, where is he?"
And here is Randy.

He's amazing.

I went: "Randy please you're amazing,
I've got to photograph you."

He said: "OK," and I: "But your mother
said you won't be photographed."

He said: "No I would. I love this."

"I'm 16, I don't talk to my mother."

(Laughter) (Applause)

And that's Randy.

Gladys [unclear].

The incidence of this condition
worldwide is 1 in 20,000,

but it changes
from community to community.

This is Gladys, she's a Kuna Indian
in the San Blas region of Panama,

where it's the highest incidence
in the world, it's 1 in 125.

This is Mary in Fiji,

where at the turn of the 19th century
a tribe could not hold their territory,

unless they had somebody with albinism
in a powerful political position.

Joseph from the same community.

Keke from India. Keke was given
death threats as an 8-eight-old,

so her family moved to New Zealand,
which is where I met her.

We started an albinism
support group in India,

where we heard lots of other stories.

So not all stories were negative.

We had a lot of really positive stories
from communities in India.

Sewana from Korea.

This is Brooke, just adopted from China.

This is my friend Harry from Puerto Rico.

This is Natalia from Russia.

We started an albinism support group
in Moscow.

Maison in Malaysia.

Kiara. All she ever wanted
to do is be a dancer.

She is in New Zealand.

She was told
because of her visual impairment

she'll never follow the dance steps.

She'll never be able to do this:
"Find something else,

you'll never be able to dance
in chorus. Find another dream."

She was like: "No!"
She's New Zealand's Celtic dance champion.

And she just opened up
a school for dancers,

kids with albinism, and visual
impairments in Auckland.

My friend Lauren from Australia.

Lauren has a sister
who has albinism as well,

but her sister chooses to dye her hair,
her eyelashes, and her eyebrows

so even in the same family support system

you have very different ideas
about self acceptance.

The highest mortality
associated with albinism is in Africa,

and it's due to skin cancer

because without the natural
protection from the sun,

these kids will get skin cancer.

This is young mom Danielle
- we were in Bamako, in Mali -

and she walked two days
to get to where we were

working with Salif Keïta,

a singer with albinism,

to get any information
to save the life of her daughter.

She is now helping us with
the Rapid Response Program,

going in the villages

talking to new moms showing them
how to protect their kids.

This is my friend Siri.

When she was born, the father's family
put the mother and Siri out of the house

saying: "You are cursed.
You don't belong here. You are out!"

The mother not knowing
what else to do, put Siri in the sun,

thinking that'd make her dark,
so that's all sun damage.

We're working a lot in South Africa
as well, with a lot of students.

A lot of kids all over Africa
will go to special schools for the blind.

Even if there's vision,
they go to schools for the blind,

because the teasing is so bad.

The discrimination,
the stigma about albinism

in African communities is so high.

This is my friend CK.

CK and I formed
an Albinism Society of Kenya.

"Ask" was our slogan. In Nairobi.

CK is the first kid I met in all Africa
that was mainstream.

She went to a mainstream school.

I went: "CK, how is it possible
you went to a mainstream school?"

She said: "Because
of my twin sister Daphne!"

Daphne'd take all homework
off the board, make sure

she understood the assignments,
but more importantly,

when kids would tease her,
Daphne would beat them up.

(Laughter)

I'm spending a lot of time,
in Tanzania in East Africa now.

There's a horrible thing
that's going on there.

Witch doctors are saying:

"Bring me the bones of an albino,
I'll make a potion that'll make you rich."

So these kids are being murdered.

In the last two years,
over 70 kids were killed.

And they are just starting
to report on this,

and we're working very closely
with the government, to raise awareness,

to work with the communities
to protect these gorgeous kids.

They're being sent to schools,
where they can be protected.

This is in Shinyanga,
close to the Burundi border,

where these kids are being sent
so they can be protected,

but they are being ripped out
of their families homes

and their mothers' arms,
just to keep them in this one area.

This is a young girl
who cried the whole day

because she was taken from her mom.

That's the first time she was quiet.

This is a young woman in Dar es Salaam
who started an albinism support group,

and dance troupe, to change
and raise awareness of the condition.

This is one of the kids
in the Mwanza region hiding inside,

fearing for his own life.

We're working very closely
with the government to change that.

These are some of the kids
in the last school in Shinyanga.

Creating visuals as well like this,

is the kind of change
the way people see albinism.

That it's not a curse on the community
but occurs worldwide.

I received the Art of Reporting Award
for the Life magazine piece,

by an organization called Genetic Alliance

a coalition of all
genetic support groups worldwide.

It's great honor, I love it, my 1st prize
as a photographer, it's great.

I went and I received it,
and the president at the time said:

"I'm also the founder and director
of another organization,

called The Chromosome 18
Registry and Research Society.

When you have an anomaly
on your 18th chromosome,

all kinds of challenges.

So we have a great support group

for families and kids
living with these differences.

Would you come
and speak to to our families?"

I said: "I have photographs
of kids with albinism only."

She said: No, it's OK,
there's a universal message here.

It's about all differences.
So come and tell our families.

Give them a message they can celebrate
the lives and beauty of their own kids.

I'm like: "Absolutely, this is fantastic."
What the hell is a chromosome anomaly?!

I had no idea. I'm
a fashion photographer. (Laughter)

So I went back to the same
medical textbooks, and that's what I saw.

I was terrified. I thought:
albinism was so easy.

I kept thinking: how am I going
to get these kids? This is terrifying.

They have palates and mobility issues.
I thought, "What am I going to do?"

But I'm committed and I went,
to the auditorium where the kids were,

opened the door,
- these images burned to my head -

and found these kids.

And I was surrounded by kids
screaming with laughter,

Ellington and Remi,
this is Claudia; Elizabeth, Sean.

Sean has tetrasomy 18.

We've been photographing
Sean for 10 years now.

I have photographs of him
living with this condition,

for the last 10 years growing up.

We decided to create an exhibition,

commemorating
the people's genome celebration.

So it was pretty amazing that we did this,

we'll do an exhibition
at the Smithsonian in DC.

We decided to invite all
genetic support groups to join our team

to show this universal message.

Marfan Syndrome.

This is what I saw when we've been invited
to Connective Tissue Disorder.

These kids grow very tall.

I say, "OK this is great." I understand
the importance of this photograph;

to teach what Marfan Syndrome
looks like and how it presents itself.

But there's got to be
a better way to show it.

Show him in motion. Show
Bill moving. Give him the mobility.

Give me more information in that photo.

That's Billy.

Costello Syndrome.

These are great friends
of mine Danielleº and Maggie.

They met at the very first
Costello Syndrome conference in Florida.

It was the first time they met anyone
that looked like themselves.

They were so excited
they became great friends.

Last conference that was 10 years later,
they are still best friends.

That's amazing!

Except now they're gangsters.

(Laughter)

My friend Wyatt with Anopthalmia.

PJ, Arthrogryposis Multiplex Congenita,
can't use his arms.

Sara, living with Moebius Syndrome.

These kids with Spinal Muscular Atrophy.
they have their spines disintegrate.

I went to the conference, again,
thinking: "It's going to be rough."

I'm photographing this kids, look
at the [pics] and they are all blurry

because most of the conference

these kids spent time to run me over
in their wheelchairs.

(Laughter)

Amazing kids.

I was just in the Middle East in Quatar.
Ganem with Caudal Regression Syndrome.

Nadia is a medical student in Doha.
Kayla with Myotonic Dystrophy.

Ben with Myotubular Myopathy.
.

These are just some
of these gorgeous kids.

Alana and Lisa with Down Syndrome.

I was just in Geneva where
we work with a lot of kids...

This is the beautiful Alexandra.

Kathryn with Alpha-1 Antitrypsin.

It's just showing
the beauty of the difference

and see these gorgeous kids.

Here's Sara with Sturge-Weber.

Born with a birth mark bilaterally,
across her face; she's amazing.

And then Kayleen, with the same
condition, walks up in my studio.

She has a crop top on.
She's 14. She's amazing.

We're taking photographs. She's screaming
around, we're having a blast.

At the end of the shoot
her mom calls me, and she said:

"You know, Kayleen never
discusses school with me.

If I hear that kids are teasing her,

I'm going to come in the next day
swinging a baseball bat."

But that makes things worse
for her, so she says nothing.

But on the way home she said:

"Mom, kids tell me I'm ugly
every single day. And I believe them."

They tell that I'm a freak and a monster.
I believed them, until today."

Then she mobilized me.

She got me to go to her school,

and present a positive exposure
to 400 freshman students.

She's on stage with me,

and in her little Madonna-esque
headphone's screaming: "What is normal?"

So she created an equation
for positive exposure which says:

self acceptance equals
self esteem equals self advocacy.

She's that way the world
is going to change.

So as an artist, it's my absolute mission
and responsibility,

to steady someone's gaze
long enough, till they see what I see,

till they see beauty in all is different.

Thank you.

(Applause)