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)