WEBVTT

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I'm a fashion photographer.

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

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

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Always told though who was beautiful.

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I was always forced to work

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within the parameters
of the beauty standard.

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

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who she is going be next season,

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and how it was going to keep changing

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

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

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

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I was always told though
who was beautiful.

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

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

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It was just mind boggling,
and so frustrating.

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Every single booking I would do,
I was always told

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

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It drove me insane.

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I was leaving my studio one afternoon,

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after being really frustrated
by a major casting,

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

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

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She had a genetic condition
called albinism.

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

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She was stunning.
and before I could say:

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

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the bus came and she took off.

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

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But she was stunning.

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I ran down to the closest
Barnes and Noble

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to find anything I could
about this condition.

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And I found photographs like this.
Photographs of sadness.

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Images of a bright red eye.

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

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And I found images of kids in Africa

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who were surrounded by tribes
pointing spears at them.

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And people in hospital beds
looking forlorn.

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These were images lacking humanity.

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

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Then I started going through
these medical journals

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and started finding other photographs.

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Of kids up against walls
and doctors offices,

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with their eyes covered in a bar.

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These were images
of sickness, of diseases.

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There was no humanity in these images.

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

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I was so frustrated by it.
It was horrifying.

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And then I started doing more research,

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

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

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This is "Powder".

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He had albinism because his mother
was struck by lightening

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when she was pregnant with him.

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"The princess bride," "Matrix reloaded,"

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even most recently, "The Da Vinci code".

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There is an associated
visual impairment with albinism,

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most people with this condition
are considered legally blind,

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although there's always vision.

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But he was this evil albino

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driving around Paris at night
shooting at people,

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

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(Laughter)

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

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- NOAH is the National Organization
for Albinism and Hyperpigmentation,

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

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I said: "I'm a fashion photographer.

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

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

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

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

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

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

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

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

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

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

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

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

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She was tortured her whole life
because of her difference.

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

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

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

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

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

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

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She went from this
(hunches over)

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to that (straightens up)

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(Laughter)

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

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(Applause)

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

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

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that changed the way
her community sees her different.

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So these first images
were in Life magazine.

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This is Charlotte,

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who's actually the president
of NOAH At the time

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

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

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and she loved the project after that.

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

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We used the same images
for many other photographs

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and lots of other magazines worldwide.

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

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I started getting calls from people
everywhere in the world.

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It's pretty amazing.

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People would say: "Could you come

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

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

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I went to this
one conference in Philadelphia,

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

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

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

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

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He's amazing.

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

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

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

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

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(Laughter) (Applause)

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And that's Randy.

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Gladys [unclear].

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

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but it changes
from community to community.

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

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

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This is Mary in Fiji,

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

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

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Joseph from the same community.

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

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

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We started an albinism
support group in India,

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where we heard lots of other stories.

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So not all stories were negative.

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

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Sewana from Korea.

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This is Brooke, just adopted from China.

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This is my friend Harry from Puerto Rico.

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This is Natalia from Russia.

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We started an albinism support group
in Moscow.

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Maison in Malaysia.

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

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She is in New Zealand.

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She was told
because of her visual impairment

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she'll never follow the dance steps.

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

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

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

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And she just opened up
a school for dancers,

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kids with albinism, and visual
impairments in Auckland.

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My friend Lauren from Australia.

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Lauren has a sister
who has albinism as well,

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

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so even in the same family support system

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you have very different ideas
about self acceptance.

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The highest mortality
associated with albinism is in Africa,

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and it's due to skin cancer

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because without the natural
protection from the sun,

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these kids will get skin cancer.

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

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and she walked two days
to get to where we were

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working with Salif Keïta,

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a singer with albinism,

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

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She is now helping us with
the Rapid Response Program,

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going in the villages

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

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This is my friend Siri.

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

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

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

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

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

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

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

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because the teasing is so bad.

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The discrimination,
the stigma about albinism

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in African communities is so high.

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This is my friend CK.

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CK and I formed
an Albinism Society of Kenya.

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"Ask" was our slogan. In Nairobi.

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

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She went to a mainstream school.

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

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

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

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she understood the assignments,
but more importantly,

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

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(Laughter)

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

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

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Witch doctors are saying:

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

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So these kids are being murdered.

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

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And they are just starting
to report on this,

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

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to work with the communities
to protect these gorgeous kids.

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

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This is in Shinyanga,
close to the Burundi border,

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

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but they are being ripped out
of their families homes

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

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This is a young girl
who cried the whole day

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because she was taken from her mom.

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That's the first time she was quiet.

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

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

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

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fearing for his own life.

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

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

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Creating visuals as well like this,

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is the kind of change
the way people see albinism.

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

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

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by an organization called Genetic Alliance

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a coalition of all
genetic support groups worldwide.

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

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

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

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called The Chromosome 18
Registry and Research Society.

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When you have an anomaly
on your 18th chromosome,

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all kinds of challenges.

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So we have a great support group

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for families and kids
living with these differences.

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Would you come
and speak to to our families?"

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

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

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

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

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

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

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

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

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

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

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

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

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and found these kids.

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And I was surrounded by kids
screaming with laughter,

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

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Sean has tetrasomy 18.

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We've been photographing
Sean for 10 years now.

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I have photographs of him
living with this condition,

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for the last 10 years growing up.

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We decided to create an exhibition,

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commemorating
the people's genome celebration.

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So it was pretty amazing that we did this,

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

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

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to show this universal message.

00:11:40.667 --> 00:11:42.168
Marfan Syndrome.

00:11:42.207 --> 00:11:45.678
This is what I saw when we've been invited
to Connective Tissue Disorder.

00:11:45.679 --> 00:11:47.140
These kids grow very tall.

00:11:47.141 --> 00:11:51.293
I say, "OK this is great." I understand
the importance of this photograph;

00:11:51.294 --> 00:11:55.526
to teach what Marfan Syndrome
looks like and how it presents itself.

00:11:55.527 --> 00:11:57.887
But there's got to be
a better way to show it.

00:11:57.888 --> 00:12:01.008
Show him in motion. Show
Bill moving. Give him the mobility.

00:12:01.009 --> 00:12:03.690
Give me more information in that photo.

00:12:03.691 --> 00:12:04.774
That's Billy.

00:12:04.775 --> 00:12:06.338
Costello Syndrome.

00:12:06.339 --> 00:12:08.872
These are great friends
of mine Danielleº and Maggie.

00:12:08.873 --> 00:12:12.542
They met at the very first
Costello Syndrome conference in Florida.

00:12:12.543 --> 00:12:15.643
It was the first time they met anyone
that looked like themselves.

00:12:15.644 --> 00:12:17.897
They were so excited
they became great friends.

00:12:17.898 --> 00:12:21.242
Last conference that was 10 years later,
they are still best friends.

00:12:21.243 --> 00:12:22.897
That's amazing!

00:12:22.898 --> 00:12:24.689
Except now they're gangsters.

00:12:24.690 --> 00:12:25.532
(Laughter)

00:12:25.542 --> 00:12:27.876
My friend Wyatt with Anopthalmia.

00:12:27.876 --> 00:12:32.166
PJ, Arthrogryposis Multiplex Congenita,
can't use his arms.

00:12:32.167 --> 00:12:34.459
Sara, living with Moebius Syndrome.

00:12:34.460 --> 00:12:38.472
These kids with Spinal Muscular Atrophy.
they have their spines disintegrate.

00:12:38.473 --> 00:12:41.736
I went to the conference, again,
thinking: "It's going to be rough."

00:12:41.737 --> 00:12:45.170
I'm photographing this kids, look
at the [pics] and they are all blurry

00:12:45.171 --> 00:12:46.650
because most of the conference

00:12:46.651 --> 00:12:49.511
these kids spent time to run me over
in their wheelchairs.

00:12:49.512 --> 00:12:50.263
(Laughter)

00:12:50.264 --> 00:12:51.314
Amazing kids.

00:12:51.334 --> 00:12:56.085
I was just in the Middle East in Quatar.
Ganem with Caudal Regression Syndrome.

00:12:56.086 --> 00:13:01.917
Nadia is a medical student in Doha.
Kayla with Myotonic Dystrophy.

00:13:01.918 --> 00:13:03.794
Ben with Myotubular Myopathy.
.

00:13:03.799 --> 00:13:05.873
These are just some
of these gorgeous kids.

00:13:05.874 --> 00:13:07.515
Alana and Lisa with Down Syndrome.

00:13:07.516 --> 00:13:10.147
I was just in Geneva where
we work with a lot of kids...

00:13:10.148 --> 00:13:11.864
This is the beautiful Alexandra.

00:13:11.876 --> 00:13:13.791
Kathryn with Alpha-1 Antitrypsin.

00:13:13.792 --> 00:13:15.989
It's just showing
the beauty of the difference

00:13:15.990 --> 00:13:17.361
and see these gorgeous kids.

00:13:17.375 --> 00:13:19.327
Here's Sara with Sturge-Weber.

00:13:19.328 --> 00:13:22.625
Born with a birth mark bilaterally,
across her face; she's amazing.

00:13:22.626 --> 00:13:25.751
And then Kayleen, with the same
condition, walks up in my studio.

00:13:25.767 --> 00:13:30.321
She has a crop top on.
She's 14. She's amazing.

00:13:30.322 --> 00:13:33.691
We're taking photographs. She's screaming
around, we're having a blast.

00:13:33.692 --> 00:13:36.465
At the end of the shoot
her mom calls me, and she said:

00:13:36.466 --> 00:13:38.918
"You know, Kayleen never
discusses school with me.

00:13:38.922 --> 00:13:40.882
If I hear that kids are teasing her,

00:13:40.883 --> 00:13:43.719
I'm going to come in the next day
swinging a baseball bat."

00:13:43.720 --> 00:13:46.457
But that makes things worse
for her, so she says nothing.

00:13:46.458 --> 00:13:48.034
But on the way home she said:

00:13:48.044 --> 00:13:51.256
"Mom, kids tell me I'm ugly
every single day. And I believe them."

00:13:51.257 --> 00:13:55.421
They tell that I'm a freak and a monster.
I believed them, until today."

00:13:55.422 --> 00:13:57.095
Then she mobilized me.

00:13:57.096 --> 00:13:58.614
She got me to go to her school,

00:13:58.615 --> 00:14:01.735
and present a positive exposure
to 400 freshman students.

00:14:01.736 --> 00:14:03.204
She's on stage with me,

00:14:03.209 --> 00:14:07.043
and in her little Madonna-esque
headphone's screaming: "What is normal?"

00:14:07.044 --> 00:14:09.972
So she created an equation
for positive exposure which says:

00:14:09.973 --> 00:14:14.050
self acceptance equals
self esteem equals self advocacy.

00:14:14.051 --> 00:14:16.229
She's that way the world
is going to change.

00:14:16.230 --> 00:14:19.872
So as an artist, it's my absolute mission
and responsibility,

00:14:19.873 --> 00:14:24.069
to steady someone's gaze
long enough, till they see what I see,

00:14:24.070 --> 00:14:26.124
till they see beauty in all is different.

00:14:26.125 --> 00:14:27.125
Thank you.

00:14:27.126 --> 00:14:28.292
(Applause)