WEBVTT

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[small engine revving]

00:00:51.100 --> 00:00:54.643
(female 1)
It feels pretty freeing
because you could do

00:00:54.667 --> 00:00:59.610
whatever you wanted on the bike
when you had your helmet on.

00:00:59.634 --> 00:01:02.210
All right, Sarah! [clapping]

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Take all your anger
out on the track.

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People, they stare.

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Am I really that different
that you have to stare?

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(female 2)
People just see you
on the street

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and it\'s \"that albino\"
instead of thinking,

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OK that\'s Jayne, you know?

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They don\'t see us like a person.

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So, hi guys.

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I was a fashion photographer
in New York City.

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I\'m actually traveling around
the world photographing people

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with genetic conditions.

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(Jayne)
I had never thought
of the power of a photograph

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as in the impact it would
have in someone\'s life.

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(director)
So where would you want to see
Rick\'s photographs?

00:02:01.167 --> 00:02:01.910
[giggles]

00:02:01.934 --> 00:02:05.710 position:20%
(Sarah)
I think that it would make
a lot of girls realize

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that there are people out
there with differences.

00:02:09.667 --> 00:02:11.343
(Rick) As a fashion
photographer I bought

00:02:11.367 --> 00:02:14.610 position:20%
hook, line and sinker into
that whole beauty idea.

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This is the face,
this is what you do.

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And I thought, there\'s
got to be something else.

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Connor, let me see,
where are you?

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Ooh, wait \'til you see this.

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You\'re going to die
when you see this! [laughs]

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Awesome.

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Wow!

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David, amazing.

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Look at him!

00:02:40.200 --> 00:02:42.710 position:20%
Often when I\'m photographing
someone with a difference,

00:02:42.734 --> 00:02:44.810 position:20%
somebody will come and see
the photographs and say,

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you\'re really capturing
their inner beauty.

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And I\'m like fuck inner beauty,
these kids are gorgeous.

00:03:04.767 --> 00:03:08.376 position:20%
I remember when you kissed
your first boy at a race.

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No.

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Yes.

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You came running back to the
truck and you said, mom, mom.

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I just kissed a boy.

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No.

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I didn\'t kiss him.

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I was five and he kissed me.

00:03:21.634 --> 00:03:23.710 position:20%
It\'s not an exciting story.

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[all laugh]

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Next subject.

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We did know that we were
going to have a Sarah

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and we were celebrating.

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And when she was born I
remember I said, what is that?

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I was not getting any
answers from any doctors.

00:03:51.834 --> 00:03:57.476 position:20%
I had a dermatologist who I
worked with and she said,

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I\'m sorry I can\'t
come to the hospital.

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I\'m not affiliated
with the hospital.

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And I said, bullshit, you\'re my
friend, get in here and see me.

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It was called
Sturge-Weber syndrome.

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The birthmark is
also on the brain,

00:04:14.534 --> 00:04:23.677 position:20%
on the eyes and the complication
was neurological problems.

00:04:23.701 --> 00:04:26.677 position:20%
And Sarah could be a person

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that really couldn\'t
function in life.

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(Sarah)
And this is my
elementary school.

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I haven\'t been here
since I left school.

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I developed this way of
not seeing people staring

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at my birthmark and it\'s
kind of basically I look down

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when I walk so I don\'t
have to stare at,

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look at people staring at me.

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If I fall, promise not
to laugh at me. [laughs]

00:05:06.067 --> 00:05:09.810
(Judy)
She left for homeschool
when she was in eighth grade

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because she had difficulty
being in a school environment.

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If you\'re not the most popular

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then you sit at the
lunch table by yourself.

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(Sarah)
I was quiet.

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I was. I always just sat
there and ate my lunch.

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Where is she,
get over here!

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Actually, I rode motorcycles...

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What?
...from the time I was 13.

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I have to tell a lot of kids
about you now! [all laugh]

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(Judy)
This is 20 years
for me of like

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ushering her through life
and trying to make her be

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a really comfortable
person in the world.

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[pop music plays]

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You got to come here
and look at this.

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Come, is she... Sarah!

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(assistant)
Wow!

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(Rick)
You are so gorgeous.

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Wow!

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(assistant)
That\'s good stuff.

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(Rick)
Gorgeous, gorgeous, oh my god.

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I like my hair.

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(Rick)
You\'re hot.

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(Rick)
Oh Cindy, oh beautiful...

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(Rick)
What really kind of
pushed me to the next level

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as a fashion photographer
was that at one point

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I was shooting Cindy Crawford.

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A certain innocence and, also
a certain, a definite beauty.

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I\'ve seen beauty at the height,
but it was all done for me.

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Her hair, her makeup,
I didn\'t feel like

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I was in any of those images.

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It was art that
didn\'t care about

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the person inside
the photograph.

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He could change
how people saw a dress,

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how people saw a look, but
not how people saw themselves

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or how people saw the world.

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I\'ve known Rick 30 years,
that is just not who Rick is.

00:07:28.000 --> 00:07:30.410 position:20%
(Rick)
I remember looking through
the camera thinking,

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I don\'t even have to
be here, you know?

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Ooh, this is not what
I want to be doing.

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-- Hi!
-- Hi!

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I went to the Internet
and tried to look for

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albinism information in Africa.

00:08:09.300 --> 00:08:10.743 position:20%
-- What is your name, John?
-- I\'m John.

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-- My name is Anne.
-- Anne, I\'m Rick.

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(Jayne)
I didn\'t get any
directly about Kenya.

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But I came across Rick
and Positive Exposure.

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(Rick)
Sometimes people think
it\'s the mother\'s fault

00:08:24.167 --> 00:08:26.443 position:20%
but both mother and father
have to carry the gene.

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(Jayne)
The photos that I saw,
they were like, wow.

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There are still more people in
the world who have albinism

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and who are actually smiling.

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I was, oh, Rick is now the
person I need to contact first.

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(Rick)
Oh, Jayne, you look stunning.

00:08:48.667 --> 00:08:53.109 position:20%
(Jayne)
In the olden days, if a child
was born with albinism,

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the midwives were
supposed to kill it at birth.

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It\'s something like
an abomination.

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(Rick)
That looks great.

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(Jayne)
You are called \"money\"
or \"walking bank notes\"

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or what have you.

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(man 1)
Those issues you can
let them go.

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Like somebody stopping and
calling you \"pesa.\" [money]

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Why should you start
fighting for? No.

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You know the reason why
the person has called you money?

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You know why?

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You can be killed and
then your body parts be used,

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maybe for business
purposes -- sold.

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(Jayne)
If you talk to people
in Tanzania,

00:09:35.801 --> 00:09:39.234 position:20%
this is how it all started.

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(reporter)
Some African witch doctors
claim the body parts, skin,

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golden hair and even
the genitals of albinos

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will bring good luck in
love, life and business.

00:09:53.300 --> 00:09:57.310 position:20%
More than 40 albinos have been
slaughtered in Tanzania

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and it\'s now spreading
across east Africa.

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(Jayne)
Something happens to you
and you keep it to yourself

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and the next time he
will grab you and take you,

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so help the guys understand
we are not money, we are not.

00:10:12.100 --> 00:10:17.000 position:20%
These are possibilities that
could also be in Kenya.

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(Jayne)
These are classrooms
and I used to sit there

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at the same chair.

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People with albinism
have low vision.

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Some of these kids
go to blind schools,

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but I went to regular school.

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And you see the
blackboard looks grayish.

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The contrast was too low

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so I could never see
what the teacher do.

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What were the kids like toward
you at school in this classroom?

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(Jayne)
They didn\'t want
to be social with me,

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but when it came to classwork
they always had to come to me

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because maybe they
had a question

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and I would be the
only person to answer.

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So they had no choice.

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(Jayne)
In high school it was my
first time in a boarding school

00:11:28.200 --> 00:11:30.710 position:20%
of about a thousand girls.

00:11:30.734 --> 00:11:34.043 position:20%
We had this open place where
people go take showers.

00:11:34.067 --> 00:11:37.476 position:20%
One day I was taking a shower
and the whole school

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was there looking at me
without clothes.

00:11:40.400 --> 00:11:45.743 position:20%
So after that, like I would
even miss taking showers

00:11:45.767 --> 00:11:51.767 position:20%
to avoid people looking
and making nasty comments.

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Hi, hello.

00:12:01.868 --> 00:12:07.100
[speaking in Swahili]

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Oh let\'s see.

00:12:15.334 --> 00:12:17.310
Oh, Jayne Waithera.

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Wow!

00:12:18.834 --> 00:12:22.677
(Jayne speaking Swahili)
Do you know where
my baby pictures are?

00:12:22.701 --> 00:12:25.009 position:20%
(Jane Kiago speaking Swahili)
We didn\'t think the pictures
would develop.

00:12:25.033 --> 00:12:27.009
(Jayne)
They thought I cannot get out.

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(Rick)
Oh no, that happens still today.

00:12:29.734 --> 00:12:33.844 position:20%
(Jane Kiago, in Swahili)
Nobody wanted anything to do
with you, even then.

00:12:33.868 --> 00:12:39.376 position:20%
(Jayne speaking Swahili)
What made you decide to bring me
up as your own child

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instead of, throwing me
away like my mother did?

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What is it?

00:12:48.467 --> 00:12:53.009 position:20%
(Jane Kiago, in Swahili)
You are just like other people
except for a birth defect.

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I realized God had a reason
for placing you in my family.

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(Jayne speaking Swahili)
After my mom left me,
did she ever come back?

00:12:59.167 --> 00:13:05.743
(Jane Kiago speaking Swahili)
She comes, but she has never
been interested in her child.

00:13:05.767 --> 00:13:08.143
Since you were in
nursery school until now.

00:13:08.167 --> 00:13:10.076 position:20%
(Jayne speaking Swahili)
What about society, the people
in the neighborhood?

00:13:10.100 --> 00:13:13.777 position:20%
(Jane Kiago, in Swahili)
Even today, there are people
here who still believe

00:13:13.801 --> 00:13:15.143
you are the child
of a white man.

00:13:15.167 --> 00:13:19.510
(Tabitha speaking Swahili)
A white man just like this one.

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[all laugh]

00:13:20.734 --> 00:13:26.944
(Jayne)
So she says I was born by
amzungu[white man] like you.

00:13:26.968 --> 00:13:29.701
(Rick)
Like me?

00:13:43.634 --> 00:13:46.577
Hi, it\'s very
nice to meet you.

00:13:46.601 --> 00:13:51.434
[laughs] I could be making
millions of dollars a year.

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Be very calm.

00:13:56.567 --> 00:14:04.844
[screaming] Get in here!

00:14:04.868 --> 00:14:06.376
This is Joe.

00:14:06.400 --> 00:14:07.143
Hi Joe, Margaret.

00:14:07.167 --> 00:14:12.410
(Rick)
It was 1997, I just did
a huge casting.

00:14:12.434 --> 00:14:14.510
I left the studio and was
running down the street

00:14:14.534 --> 00:14:18.510 position:20%
and spotted this beautiful
kid waiting for a bus.

00:14:18.534 --> 00:14:19.743
I knew she had albinism,

00:14:19.767 --> 00:14:21.743
it was like somebody
punched me in the head.

00:14:21.767 --> 00:14:24.976 position:20%
I ran to medical textbooks
and found albinism.

00:14:25.000 --> 00:14:27.143
And it was all the
same type of image.

00:14:27.167 --> 00:14:30.844
They were images without
humanity, of sadness,

00:14:30.868 --> 00:14:34.643
of illness, of despair.

00:14:34.667 --> 00:14:37.210 position:20%
He came up to me at
the bus stop and was like,

00:14:37.234 --> 00:14:38.243
I really want to photograph you.

00:14:38.267 --> 00:14:39.844
Gave me his business
card and everything,

00:14:39.868 --> 00:14:42.710
but growing up in
New York you hear,

00:14:42.734 --> 00:14:44.976
there are all these
sorts of creeps out there

00:14:45.000 --> 00:14:49.076
and I sort of was
like, uh, no thanks.

00:14:49.100 --> 00:14:51.276
I went back the very
next day but I pre-prepared

00:14:51.300 --> 00:14:55.243 position:20%
a little sample of my work,
put a letter to her mom.

00:14:55.267 --> 00:14:58.109
I think the second time
he like brought a portfolio

00:14:58.133 --> 00:14:59.944
and everything and
I was like, oh,

00:14:59.968 --> 00:15:01.376
I guess this guy\'s legitimate.

00:15:01.400 --> 00:15:04.076
The sweat was pouring off
my, and I\'m like OK, great.

00:15:04.100 --> 00:15:06.510
But then a week went by
and nothing happened.

00:15:06.534 --> 00:15:08.710
I had it on the bus,
but I think it still kind of

00:15:08.734 --> 00:15:12.877
weirded me out so I left
it on the bus. [laughs]

00:15:12.901 --> 00:15:16.710
You left that folder
on the bus and hid it?

00:15:16.734 --> 00:15:20.844
I spent hours on
that god damn folder!

00:15:20.868 --> 00:15:21.743
Sorry.

00:15:21.767 --> 00:15:23.510
I never knew that!

00:15:23.534 --> 00:15:26.443
And I would go out there all
the time thinking, well maybe,

00:15:26.467 --> 00:15:27.777 position:20%
and I never saw her again.

00:15:27.801 --> 00:15:32.777
It\'s taken me over
ten years to photograph her.

00:15:32.801 --> 00:15:34.976 position:20%
So I contacted National
Organization for Albinism,

00:15:35.000 --> 00:15:37.976 position:20%
said, hey let\'s show the world
the beauty of albinism,

00:15:38.000 --> 00:15:38.710
let\'s work together.

00:15:38.734 --> 00:15:39.743
And they told me to get lost.

00:15:39.767 --> 00:15:43.343 position:20%
Later found out there were
fears of exploitation.

00:15:43.367 --> 00:15:44.310
Every time
there was an article,

00:15:44.334 --> 00:15:47.376 position:20%
it was always about a victim
or some sensational story:

00:15:47.400 --> 00:15:50.901 position:20%
Albinos burst into flames.

00:15:56.300 --> 00:15:57.143
Where am I?

00:15:57.167 --> 00:15:59.310
The pit of despair.

00:15:59.334 --> 00:16:03.043
(Rick)
So you can tell me
if you like the images.

00:16:03.067 --> 00:16:05.844
We\'ll partner and they agreed.

00:16:05.868 --> 00:16:10.043
(Joseph)
The girls walked in for
the first shoot and sat down

00:16:10.067 --> 00:16:13.910
and I mean that\'s how she sat.

00:16:13.934 --> 00:16:18.767 position:20%
I know Rick\'s described this,
but this is how she was.

00:16:20.467 --> 00:16:22.877 position:20%
(Rick)
When I first photographed
the first girl, Christine,

00:16:22.901 --> 00:16:29.243
in my studio and I was
like, you are stunning.

00:16:29.267 --> 00:16:33.534
And then this kid
just went, boom!

00:16:39.767 --> 00:16:43.543
His motivation was to do
a beauty story as

00:16:43.567 --> 00:16:45.643
Rick Guidotti the
fashion photographer.

00:16:45.667 --> 00:16:50.443
He hired the best stylists,
right off the runway clothes.

00:16:50.467 --> 00:16:52.109
I went to this one agent
and she said to me,

00:16:52.133 --> 00:16:55.610
well this isn\'t what
Conde Nastis doing.

00:16:55.634 --> 00:16:58.643
And I wanted, I was like,
excuse me one second.

00:16:58.667 --> 00:17:01.176
Open the window, I was going
to jump out or push her out.

00:17:01.200 --> 00:17:05.610
He went from company to
company to try to sell them

00:17:05.634 --> 00:17:07.243
on the idea that just because

00:17:07.267 --> 00:17:09.443
they let Cindy Crawford
keep her mole

00:17:09.467 --> 00:17:13.777
is not speaking highly
of the inclusiveness

00:17:13.801 --> 00:17:14.777
of what\'s beautiful.

00:17:14.801 --> 00:17:17.443
And I started thinking,
wellLife Magazine, why not?

00:17:17.467 --> 00:17:20.643
I\'m like, \"I don\'t know anybody
atLife Magazineso I figured,

00:17:20.667 --> 00:17:21.577
I\'ll just call.\"

00:17:21.601 --> 00:17:26.543
I just remember looking
at them and going, wow!

00:17:26.567 --> 00:17:29.543
He just turned
convention on its head.

00:17:29.567 --> 00:17:32.777
In the media, especially
magazine photography,

00:17:32.801 --> 00:17:36.543 position:20%
you photograph rich people
and celebrities in color

00:17:36.567 --> 00:17:38.610
and with really
flattering lighting

00:17:38.634 --> 00:17:40.743
and ordinary people
are always photographed

00:17:40.767 --> 00:17:43.844
in grainy black and
white and natural light

00:17:43.868 --> 00:17:48.067
so that every flaw is obvious.

00:17:48.234 --> 00:17:52.934
(Rick)
It was in the magazine
in six weeks.

00:17:55.834 --> 00:17:59.710 position:20%
As I started shooting people
I was also talking to them

00:17:59.734 --> 00:18:02.276
and I was hearing about
their own experiences

00:18:02.300 --> 00:18:05.601
and I was taking notes.

00:18:19.634 --> 00:18:22.276
He endured a little
heckling from friends like,

00:18:22.300 --> 00:18:24.376 position:20%
well why would you bother?

00:18:24.400 --> 00:18:27.076 position:20%
You can\'t make money at it.

00:18:27.100 --> 00:18:29.510
What\'s the payoff?

00:18:29.534 --> 00:18:33.877 position:20%
They didn\'t understand that
this was a human movement.

00:18:33.901 --> 00:18:36.476 position:20%
(Rick)
After theLife Magazinepiece
came out I thought,

00:18:36.500 --> 00:18:40.043
that was it, we\'re done.

00:18:40.067 --> 00:18:43.443 position:20%
And then I started getting calls
from people in New Zealand

00:18:43.467 --> 00:18:48.677 position:20%
and the UK, the States, saying,
you got to meet my son.

00:18:48.701 --> 00:18:49.844
Or, I\'d like to meet you.

00:18:49.868 --> 00:18:52.643
Or, I gave this to my daughter

00:18:52.667 --> 00:18:56.577
and she has them all up on her
wall, but it\'s not helping.

00:18:56.601 --> 00:18:59.677
You need to meet her,
can you meet her?

00:18:59.701 --> 00:19:04.109
This is Susan Scaeffer
from Philadelphia, Pennsylvania.

00:19:04.133 --> 00:19:07.710 position:20%
My name is Mr. Don Kern and I\'m
from the quaint little town

00:19:07.734 --> 00:19:09.777
of Bolton, Connecticut.

00:19:09.801 --> 00:19:10.944
[applause]

00:19:10.968 --> 00:19:14.376
No, no, no.
It\'s OK, it\'s OK.

00:19:14.400 --> 00:19:16.410
It\'s OK.

00:19:16.434 --> 00:19:17.777
We have to go quick.

00:19:17.801 --> 00:19:21.276
OK, my name is
Michelle Moon, I\'m 26,

00:19:21.300 --> 00:19:27.944
I can drink margaritas.
[audience laughs]

00:19:27.968 --> 00:19:29.510
(Rick)
Right after
Life Magazinecame out

00:19:29.534 --> 00:19:31.976 position:20%
the Chromosome 18 registry
contacted me and said

00:19:32.000 --> 00:19:34.677
this is such a
universal message here.

00:19:34.701 --> 00:19:36.443
Would you come to our
family conference?

00:19:36.467 --> 00:19:41.143 position:20%
But first I did my research
on what Chromosome 18 is

00:19:41.167 --> 00:19:44.476 position:20%
and saw really horrible
photographs and I thought,

00:19:44.500 --> 00:19:46.810
\"Albinism is so easy.

00:19:46.834 --> 00:19:50.476
This is terrifying.
I don\'t want to do that.\"

00:19:50.500 --> 00:19:53.310
But I went and I opened
the auditorium door

00:19:53.334 --> 00:19:58.167
and was instantly surrounded by
kids screaming with laughter.

00:19:58.767 --> 00:20:03.810
[Nirvana\'s \"Smells Like
Teen Spirit\" playing]

00:20:03.834 --> 00:20:07.310
At that moment surrounded
by kids drooling

00:20:07.334 --> 00:20:10.743
or on the floor all over me,
taking photographs, I thought,

00:20:10.767 --> 00:20:15.677
\"Shit this is what I\'ve been in
training my whole life to do.\"

00:20:15.701 --> 00:20:18.910
(Rick)
She\'s so beautiful.

00:20:18.934 --> 00:20:20.009
I mean every
time he sees her,

00:20:20.033 --> 00:20:21.910
\"I need to take a picture
of this gorgeous baby\"

00:20:21.934 --> 00:20:25.543
and you can see he knows
that she\'s beautiful.

00:20:25.567 --> 00:20:27.610
I found out in utero,
I was 22 weeks pregnant,

00:20:27.634 --> 00:20:30.643 position:20%
he had a tumor growing so that
prompted an amniocentesis.

00:20:30.667 --> 00:20:34.009
They did the amnio and then they
said that he was going to be

00:20:34.033 --> 00:20:36.410
profoundly retarded,
had no quality of life,

00:20:36.434 --> 00:20:38.243
that bringing him into
this world would be

00:20:38.267 --> 00:20:40.777
a disservice to my family
and to the world.

00:20:40.801 --> 00:20:43.243 position:20%
The doctors actually faxed me
two research reports

00:20:43.267 --> 00:20:47.777 position:20%
on ring 18 kids with pictures
of aborted, dead fetuses

00:20:47.801 --> 00:20:49.009
while I was pregnant with him.

00:20:49.033 --> 00:20:51.343
And they said, \"This is
it, this is all we know.

00:20:51.367 --> 00:20:55.276
I\'m sorry.\" So it was,
it was quite horrendous.

00:20:55.300 --> 00:20:59.610
To take away somebody\'s hope is
just wrong and I don\'t think

00:20:59.634 --> 00:21:03.033
they should do that to anybody.

00:21:03.634 --> 00:21:07.310
(Rick)
One of the tools that
they use at school for training

00:21:07.334 --> 00:21:12.210 position:20%
made by a doctor who created
a system of showing how

00:21:12.234 --> 00:21:13.577
a condition presents itself.

00:21:13.601 --> 00:21:16.009
A diagnostic
PEARL of dysmorphology...

00:21:16.033 --> 00:21:17.976
He\'s getting the kid\'s
head and he\'s saying,

00:21:18.000 --> 00:21:19.610
\"Well this is Noonan syndrome.\"

00:21:19.634 --> 00:21:20.610
And he\'s turning
the kid\'s head and,

00:21:20.634 --> 00:21:25.043
\"You see how unattractive
and how recessed the jaw is

00:21:25.067 --> 00:21:28.476
and how abnormal the
size of this eye is.\"

00:21:28.500 --> 00:21:30.577
Notice a severe hyperplasia.

00:21:30.601 --> 00:21:33.844 position:20%
(Rick)
What do I do if my daughter
or my son is diagnosed

00:21:33.868 --> 00:21:34.810
with this condition?

00:21:34.834 --> 00:21:37.109
I\'d do the same thing
Rick Guidotti would do.

00:21:37.133 --> 00:21:38.643
I\'d go running to
medical textbooks

00:21:38.667 --> 00:21:40.910
and your only option
here would be suicide.

00:21:40.934 --> 00:21:43.743
You start to mourn when you
see that these are the images.

00:21:43.767 --> 00:21:47.567
...hyperthyroidism
and Down syndrome.

00:21:50.534 --> 00:21:52.367
Hi.

00:21:53.801 --> 00:21:54.210
May I?

00:21:54.234 --> 00:21:56.176
Yeah. You\'re
going to enjoy that.

00:21:56.200 --> 00:21:57.109
Smith\'s.

00:21:57.133 --> 00:21:58.210
I know the book.

00:21:58.234 --> 00:22:00.143
I want to do the
modern version of

00:22:00.167 --> 00:22:02.810
Smith\'s book of dysmorphology.

00:22:02.834 --> 00:22:04.076
This is how I shoot.

00:22:04.100 --> 00:22:06.677
But then of course
Sturge-Weber and anophthalmia,

00:22:06.701 --> 00:22:08.109
that\'s Wyatt by the way,
he\'s awesome.

00:22:08.133 --> 00:22:12.677
(man)
Well, here\'s a picture
of where the eyelid

00:22:12.701 --> 00:22:13.743
has grown over the eye.

00:22:13.767 --> 00:22:16.910
I definitely understand
the need of education.

00:22:16.934 --> 00:22:19.443
How does Marfan syndrome
present itself?

00:22:19.467 --> 00:22:23.810
But I can assure you that
no one has ever walked into

00:22:23.834 --> 00:22:25.810
a doctor\'s office
looking like this

00:22:25.834 --> 00:22:27.677
carrying a little
portable black bar.

00:22:27.701 --> 00:22:30.376 position:20%
I just photographed a young
woman with Marfan syndrome

00:22:30.400 --> 00:22:33.076
who three years ago
as a 12-year-old girl,

00:22:33.100 --> 00:22:37.877
was asked to disrobe
and walk down a table

00:22:37.901 --> 00:22:41.577
in a conference room with
physicians and notepads.

00:22:41.601 --> 00:22:42.577
She\'s 12!

00:22:42.601 --> 00:22:44.243
You\'re impressionable at 12.

00:22:44.267 --> 00:22:47.543
And now that kid\'s
scarred for life.

00:22:47.567 --> 00:22:50.910
As a medical student
I saw those pictures.

00:22:50.934 --> 00:22:54.410
I saw those pictures
used to teach us

00:22:54.434 --> 00:22:56.543
about genetic conditions.

00:22:56.567 --> 00:23:00.176
People look as if they\'ve
never had a slice of pizza,

00:23:00.200 --> 00:23:03.043
they\'ve never seen
a movie, you know,

00:23:03.067 --> 00:23:04.577
they\'ve never kissed anyone.

00:23:04.601 --> 00:23:06.810 position:20%
And if that\'s what you see
and that\'s what you learn

00:23:06.834 --> 00:23:13.043 position:20%
you\'ll never be a doctor that
listens to your patients

00:23:13.067 --> 00:23:15.310
because those pictures
look as if they\'re people

00:23:15.334 --> 00:23:17.643
that don\'t have anything to say.

00:23:17.667 --> 00:23:20.844
Rick took pictures
of him the way I saw him.

00:23:20.868 --> 00:23:25.310
Not the way everybody else
saw him, but the way I saw him.

00:23:25.334 --> 00:23:28.944
And it was the first time
I had somebody tell me

00:23:28.968 --> 00:23:30.276
how beautiful he was.

00:23:30.300 --> 00:23:33.176
He didn\'t tell me he was small.

00:23:33.200 --> 00:23:36.643
He didn\'t tell me he had
fat cheeks from his steroids.

00:23:36.667 --> 00:23:39.543 position:20%
And they were the most
beautiful pictures of this

00:23:39.567 --> 00:23:42.510
blue-eyed little baby.

00:23:42.534 --> 00:23:51.543
♪

00:23:51.567 --> 00:24:00.643
♪

00:24:00.667 --> 00:24:09.677
♪

00:24:09.701 --> 00:24:18.968
♪

00:24:23.634 --> 00:24:26.400
Good morning!

00:24:27.467 --> 00:24:33.777
Now this boy, we got him
in one of the homes

00:24:33.801 --> 00:24:35.476
staying with the grandmother.

00:24:35.500 --> 00:24:38.443 position:20%
And the grandmother was not
allowing him to come out.

00:24:38.467 --> 00:24:41.877
So when he came to us,
when we discovered him

00:24:41.901 --> 00:24:45.543
and he came to us,
he\'s 16 years old.

00:24:45.567 --> 00:24:51.176
And he could not talk
and he felt maybe

00:24:51.200 --> 00:24:53.743
this boy may not be seen.

00:24:53.767 --> 00:24:56.176
(Rick)
Oh! Everybody must see him.

00:24:56.200 --> 00:24:59.043 position:20%
Like he\'s been locked
in the house for 15 years.

00:24:59.067 --> 00:25:02.410
Yeah. He was
15 years in the house.

00:25:02.434 --> 00:25:05.543
Wow, you\'re amazing.

00:25:05.567 --> 00:25:07.910
-- Huh?
-- Amazing!

00:25:07.934 --> 00:25:10.143
Amazing!

00:25:10.167 --> 00:25:10.976
Where is the mom?

00:25:11.000 --> 00:25:15.109
We never trust the mom,
never trust the dad.

00:25:15.133 --> 00:25:17.677
We only know the grandmother.

00:25:17.701 --> 00:25:20.743
(Jayne)
It\'s so painful
to see the same things

00:25:20.767 --> 00:25:24.543
I went through
people still go through.

00:25:24.567 --> 00:25:29.543
To tell mothers of today how to
raise their kids with albinism

00:25:29.567 --> 00:25:33.009
first I have to forgive my mom.

00:25:33.033 --> 00:25:38.910
[children singing]

00:25:38.934 --> 00:25:42.376
(Jayne)
But that thing has
left a scar in me.

00:25:42.400 --> 00:25:45.334
I can\'t forget it.

00:26:03.267 --> 00:26:07.743
(Jayne)
I really want to set up
Positive Exposure Kenya.

00:26:07.767 --> 00:26:13.476
I saw the impact of a visual
image as a very strong tool

00:26:13.500 --> 00:26:17.677
of passing information.

00:26:17.701 --> 00:26:19.710
Your first day in the office.

00:26:19.734 --> 00:26:21.743
Your first day at work.

00:26:21.767 --> 00:26:23.043
So you\'re going to be OK?

00:26:23.067 --> 00:26:25.434
Yeah.

00:26:28.534 --> 00:26:35.743
[music]

00:26:35.767 --> 00:26:41.476 position:20%
(Jayne)
As a kid I grew up being afraid
that I would be rejected

00:26:41.500 --> 00:26:44.677
but now I have to be
afraid of my own life,

00:26:44.701 --> 00:26:49.176 position:20%
which has been controverted
by a culture that oppress

00:26:49.200 --> 00:26:50.743 position:20%
a certain group of people.

00:26:50.767 --> 00:26:54.844 position:20%
So I think it\'s high time we
break some of these taboos

00:26:54.868 --> 00:26:59.810
and tell them we are not
ghost-like, we are not special,

00:26:59.834 --> 00:27:03.067
we are just human beings.

00:27:03.500 --> 00:27:07.877
You see the organization
is Positive Exposure.

00:27:07.901 --> 00:27:08.510
I have a question.

00:27:08.534 --> 00:27:11.877
Can you reverse, if you
get really bad sunburn,

00:27:11.901 --> 00:27:12.443
can you reverse?

00:27:12.467 --> 00:27:15.810
(Jayne)
To me I think these
are my beauty spots.

00:27:15.834 --> 00:27:17.009
True.

00:27:17.033 --> 00:27:19.467
Thank you.

00:27:23.167 --> 00:27:26.801
Come on, Sarah!

00:27:33.467 --> 00:27:35.310
(Sarah)
Give me a hug.

00:27:35.334 --> 00:27:37.176
I miss you.

00:27:37.200 --> 00:27:38.476 position:20%
It\'s going to be a fun day.

00:27:38.500 --> 00:27:39.076
OK good.

00:27:39.100 --> 00:27:41.210
Very informal, very easy.

00:27:41.234 --> 00:27:42.210
I was very nervous.

00:27:42.234 --> 00:27:42.877
Why?

00:27:42.901 --> 00:27:43.343
I am.

00:27:43.367 --> 00:27:44.243
You were
homeschooled, right?

00:27:44.267 --> 00:27:45.210 position:20%
I was never in high school.

00:27:45.234 --> 00:27:45.643
Wow.

00:27:45.667 --> 00:27:46.976
So I didn\'t think it
was going to be this big.

00:27:47.000 --> 00:27:50.310
(Rick)
There are a lot of kids here.

00:27:50.334 --> 00:27:52.944
What do you think?
Do they look mean?

00:27:52.968 --> 00:27:55.210
(Sarah)
Intimidating...

00:27:55.234 --> 00:27:56.376
[both laugh]

00:27:56.400 --> 00:27:58.210 position:20%
I\'m a little nervous, too!

00:27:58.234 --> 00:28:02.944
(Rick)
Ashley was asked recently,
\"Is it difficult to meet people,

00:28:02.968 --> 00:28:03.710
especially boys?\"

00:28:03.734 --> 00:28:05.610 position:20%
And Ashley\'s response was,
\"No, it\'s not difficult.

00:28:05.634 --> 00:28:10.210
If that\'s all he sees is my
wheelchair, that\'s his problem.\"

00:28:10.234 --> 00:28:13.476
(Judy)
Going and meeting
Rick just gave her

00:28:13.500 --> 00:28:19.410
this huge push into her life.

00:28:19.434 --> 00:28:22.643
(Sarah)
I got my first job.

00:28:22.667 --> 00:28:24.710
(Dave)
She\'s moved into
her own apartment.

00:28:24.734 --> 00:28:29.810 position:20%
It\'s a huge step and
it\'s one that\'s now stuck.

00:28:29.834 --> 00:28:32.109
(Sarah)
Right now
I\'m studying for my GED.

00:28:32.133 --> 00:28:36.743
Even though I\'m 21 now
I haven\'t gotten it yet,

00:28:36.767 --> 00:28:38.543
but I really want to.

00:28:38.567 --> 00:28:42.443
So I would like to invite
Sarah, Byron and Dominga.

00:28:42.467 --> 00:28:45.476
Does anybody have any
questions for our panel here?

00:28:45.500 --> 00:28:47.543
Any off the top of your, yes!

00:28:47.567 --> 00:28:53.043
I\'m wondering if you
have anger towards the people

00:28:53.067 --> 00:28:55.743
who didn\'t seem to accept you?

00:28:55.767 --> 00:28:56.910 position:20%
When I was younger anyway,

00:28:56.934 --> 00:28:59.743
I definitely had
anger towards the kids

00:28:59.767 --> 00:29:01.844
who didn\'t want to be around me.

00:29:01.868 --> 00:29:06.643
And I always got stares and
that made me uncomfortable.

00:29:06.667 --> 00:29:10.143
I don\'t like going
around high schools.

00:29:10.167 --> 00:29:11.109
(Rick)
That\'s changed.

00:29:11.133 --> 00:29:15.810
Did you have a moment where you
realized that you\'re beautiful?

00:29:15.834 --> 00:29:19.777 position:20%
I started to really accept
myself when I met Rick,

00:29:19.801 --> 00:29:22.976
\'cause he was always,
\"You\'re gorgeous!\"

00:29:23.000 --> 00:29:26.643
[laughter] It was like, I am.

00:29:26.667 --> 00:29:29.076
Also, if you\'d like
to eat lunch...

00:29:29.100 --> 00:29:35.476
You could eat lunch
with the theater group.

00:29:35.500 --> 00:29:38.777
At like 13 or 14
I started racing.

00:29:38.801 --> 00:29:42.143
(students)
That\'s so cool!

00:29:42.167 --> 00:29:45.310
(Rick)
That\'s how we\'re going to change
the way people see difference.

00:29:45.334 --> 00:29:50.234
You go like this...
[creaking sound]

00:29:51.133 --> 00:30:05.810
[Brother Ali\'s
\"Forest Whitiker\" plays]

00:30:05.834 --> 00:30:17.777
♪

00:30:17.801 --> 00:30:29.777
♪

00:30:29.801 --> 00:30:41.743
♪

00:30:41.767 --> 00:30:53.743
♪

00:30:53.767 --> 00:31:05.777
♪

00:31:05.801 --> 00:31:17.743
♪

00:31:17.767 --> 00:31:29.743
♪

00:31:29.767 --> 00:31:41.968
♪