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With support from the Open Society Institute
Regional Society of Disabled People PERSPEKTIVA and Artvideo Film Studio
PRESENT
I’m Evgeniya Simonova, an actress.
– Evgeniya, can you hear us? – Yes.
– Let’s do a sound check. – One, two, three…
Some lovely young people, directors
are making a film about people with limitations,
as they say.
They asked me to read several texts.
– Taping.
– Let’s read the first text.
It was written by a girl with autism.
Sonya Shatalova, author
"They say everyone is born with a talent.
It’s true.
God doesn’t let anyone into the world without a talent.
Including those we call people with limitations.
It’s just that talents vary.
It’s not just intellectual or artistic.
Talents can be emotional, psychological, or physical.
All kinds.
But most talents remain hidden.
It’s not the person’s fault."
LABELS
– What’s normal?
How is it determined – based on what?
I don’t know.
I just ask myself these questions.
But I don’t know the answer.
Because the world is so varied, so diverse.
Vladik Sanotsky, age 31, with Down syndrome
– We planned for him. I wanted a son.
I wanted a son very much.
Three days after his birth, the doctor came,
sat on the bed, and said:
Your child has Down syndrome.
I knew what it was.
I said, Are you sure?
She said, It’s Down. No question.
– Good dog!
– He’s shy.
– Who are your friends, Vladik?
– I don’t have any.
We’re loners by nature.
– Who do you spend time with? – Just Mama.
– Tell me about that friendship.
– We go places – to the Pushkin Museum.
We have tea together.
– Tea with jam?
– No, just tea. With ham.
– Do you like tea with Mama? – Yes.
– Vladik, can you love?
– Yes, deeply.
– Who do you love?
– Everyone.
Mama, Papa.
You.
Olga.
– We were in the metro car.
Some teenagers sat across from us.
Teens are cruel – not because they were raised badly.
But because they’re young and uncontrollable.
They haven’t experienced pain.
They started laughing at him.
He thought that they were joking
and playing with him.
He smiled at them, made faces.
The more he opened up to them
the more they laughed.
We got off. He was having fun,
but it hurt me.
Boris Levin, writer
"Tell me, who am I?
One time I dared to ask.
But the person took me to task,
And hit me in the eye.
Who am I? Tell me! I asked again.
And – consistent – he Kicked me in the knee."
– We’ve got it all wrong with people.
Our relationship are based on the physical description of a person.
Since a very young age, a child is told what a person is.
It's like in the poem: One stick arm, another stick arm…
Here is a body…
That’s how we describe to a child what a person is:
A head, two arms, a body, two legs. Right?
But I think we shouldn’t start there.
Because – and we should be prepared to that –
a person might have three arms, or one arm,
and his head might be wired differently.
We should say first that a person has a soul,
a heart in a body that might be anything at all.
That’s where we should start when we describe what a person is.
– Children with Down syndrome have different personalities.
They all are absolutely sentient and developed individuals.
Irina Khakamada, politician, mother of two children
Her daughter has Down syndrome.
– They need to adapt to the human world in a special way.
It’s hard for them to do since they have no evil in them.
They are a bit like beings from another planet.
But they have other capabilities.
We speak of them as having limitations.
That’s right – they are limited by society.
They have limitations because of the country they live in.
If they weren’t limited, they’d integrate.
But they aren’t people with limited capabilities.
– When the rain stops, we’ll go for a walk.
Why are you sticking your tongue out?
No, that’s dirty.
Vladimir Mishukov, photographer, father of four children
His youngest son has Down syndrome.
– When my son Platon was born with Down syndrome,
my thinking in this direction has accelerated.
Rain! Great! It’s a sun shower!
My thinking just speeded up. It’s like poetry.
How does poetry affect people? It speeds up their thoughts.
– Give me your hand, we’ll walk together.
– How can people not see the beauty?
– A puddle! Fabulous!
Flying, flying, flying…
– How can people not see what I see?
My photographs are but an attempt
to capture and share my view of the world.
People Close to Us
A photo project by Vladimir Mishukov
– In order to see, you just need to look.
You just have to let yourself look without prejudice.
Relax. Forget the clichés.
Forget the labels.
Forget it all and just look at the person.
I know how people judge those with Down syndrome.
They use the word as a negative label.
But they’ve never personally met anyone with Down.
There’s a stereotype:
People with Down syndrome are mentally retarded.
I haven’t seen that.
When you look closely, you see just a different mentality.
– Give me your hand.
Hello, Platon!
Let me kiss you.
Again.
– Touch it. Look, I’ll show you.
That’s you.
See how handsome you are?
"You must accept the inevitable – You’ll go to another world.
How?
And how do you know the borderline,
On one side – death, on the other – life?"
– I can only tell you how it happened.
My son went out to walk the dog and froze.
He didn’t come home. We looked for him out the window.
Finally we brought him home and call the doctor.
Nelli Levina, founder of New Opportunities
To aid people with schizophrenia
– He was a fourth–year chemistry student at the university.
That’s how his illness began,
it was like falling into a pit.
More than 70 percent of these people have higher education.
They are generally college graduates.
The illness often starts when people are at their peak.
When they first fall in love,
when they have their first dates…
And suddenly their lives get severed.
It usually happens between ages 20 and 25.
– Poetry might be a kind of escape from reality.
Sometimes I blame myself for not being able to stop writing poetry,
for being impractical.
Boris Levin, age 40, poet, with schizophrenia
– But still I just can’t stop writing poems.
It’s a cry from my heart.
Let me read you one.
"A crisis of genre, a crisis of theme,
A crisis that is strong and deep.
A crisis we all have known, For we are all alone.
Our solitude is a cross, Preordained from Above.
And we sense and feel it, As we ponder grace of the places,
Where we have come to by the grace of lord.
It’s so easy for us to get lost
And fail to tell west from east
In our languid melancholy.
And, bowing low, the willows sob,
As the vein on my temple throbs."
– I believe that one way or another, we’re all alone.
And that’s no tragedy.
The tragedy is that we don’t want to admit we are all alone.
– People avoid them. They insult them.
Often, people really don’t know about this illness.
So they fear it.
The press usually writes negatively about it.
People with schizophrenia may be declared incompetent,
and they lose all their rights.
They can’t own property, housing, or choose their profession.
They can't marry or raise children.
One in ten people with schizophrenia commit suicide.
"I’m a commuter-rail train.
I’m a bird flying high in the sky.
I’m anything that you want.
Here you are, just take it.
I’m a blemish on the earth’s skin.
I’m memory. I’m history.
In my joy and sorrow, I’m just like you.
I’m a nameless story, I’m a fish from Oceania.
I’m the scent of fresh–cut grass."
– Such powerful poems!
– Who is this Boris? Does anyone know him?
– I admire these people
– the mothers, fathers, relatives –
who live in and with this world.
Who try to preserve it.
Who try to help these emerging talents.
I want to say:
These people should be given more attention, care and love.
It’s terrible that in our country,
these people are completely ignored.
It’s just criminal.
It’s just wrong.
– In our country, the border with the world
that has solved these problems
will never disappear.
If we’re talking about humanity,
it’s too early for us to open these cosmic spaces.
Because people aren’t ready yet.
We must mentally be prepared.
We have to be open to it.
When we are ready, we’ll fly to the distant stars.
I’m almost sure.
There will be a breakthrough, and the right fuel will be invented.
And the right materials will be discovered.
Because everything is interconnected.
But right now, we live by inertia.
We may travel to the stars,
at million-kilometer distance.
But what will you bring there?
Your emptiness? A hole?
Sonya Shatalova, age 17, has autism
– Sonya has a very severe form of autism.
From her very young age, she didn’t connect with people.
Not at all, with no one.
When asked, she didn't do anything.
Of course, she didn’t speak.
She didn’t learn anything.
The specialists told me outright that she was hopeless.
For people with autism, the world is discontinuous.
For us, it’s whole, continuous.
I sit here and feel what’s behind me, what's on my sides.
What’s above me and what’s below.
My body is whole.
I sense myself – my self – in this space here and now.
But an autistic person don’t.
It’s a torturous state. It’s terrifying.
What can Sonya do now? A great deal.
She still can’t talk.
Regretfully, we couldn’t attain that.
But she graduated from a regular school.
She did very well.
She began to write poems, and we learned this by chance.
I once asked her jokingly:
Sonya, maybe you can write poetry?
She wrote "yes" and then she wrote a poem.
"Another life, another me.
I see your world in another way.
You only know that other me.
But the first one cries out most bitterly.
As the fire burned, its flame sang, About the sun and pride of men.
And my head was inflamed
By the bitterness of my days.
I’ll be nine soon – it's an eternity
Compared to the fire’s short life.
But the fire warmed people up, and what did I?
The fire warmed people up, and what did I?
Mute, awkward, cut off from life
By autism – my cursed infirmity.
Is solitude really my life–long fate?
Will I just turn to ashes, Without warming a single heart?
The fire wept as it burnt down, Tar dripping from its logs.
I weep. Silence has a high price.
Oh Lord, give me a voice."
– We cannot ask any more questions, right?
– Better not. Can they ask you another question?
– That's wonderful!
What’s your greatest dream?
Could you please hold her arm
so we can see that she’s writing herself?
– What’s your greatest dream?
– To sing…
…a song.
– What does our state do for people like this after their parents die?
– A nursing home. That's all.
A neurological–psychological institution
where they quickly die.
It’s the most horrible thought. I’m tortured by the thought
of what will happen to Sonya
when her father and I will have passed away,
when we are no longer here.
The state has absolutely nothing to offer these people.
The state doesn’t need them.
There was a huge discussion of euthanasia
of newborns with disabilities.
And one of the arguments was: They’re useless to the state.
Each year 2,500 children are born with Down syndrome in Russia.
Eighty five percent are abandoned – often at the doctors’ advice.
In Scandinavia, no one abandons these children.
In the U.S., 250 families are waiting to adopt one.
– In the West, there are numerous social networks,
there are various foundations and other options.
Adults can live independently.
If they are adapted, they can live independently.
People aren’t afraid that if the parents die
their child won’t survive. He’ll survive.
He can go to work, earn money.
He can pay rent, buy food, make love.
He can do everything.
"Why do you alive?
You were born, therefore you live."
Sonya Shatalova, writer
"Why does anyone live?
God tells everyone He sends to Earth:
'Work and celebrate Me with your deeds.'
I wish I could know what those deeds should be."
– What do you think what they should be?
What do you think? Why is a person born?
– It’s not an easy question.
People smarter than me have tried to answer it their whole lives.
But I think they never could.
– Even if a child can’t do anything, if she just lies there,
she changes the people around her.
She makes them open their hearts.
And then – how do you know if she isn’t lying there praying?
Praying for all of us, so that we could go on with our existence.
– I asked myself that question, and I finally found my answer.
What can a person share with another?
What do you think?
Give me your hand.
– Feel it? – Yes.
– What? – Your hand.
– Yes, and warmth. – Yes.
A person can share his warmth with another.
Literally!
– I'll say something, and it is not a very original idea.
A person is born to do good and to love.
Featuring: Evgeniya Simonova,
Vladislav Sanotsky, Galina Sanotskaya, Boris Levin and others
Written by Gayane Petrosian
Directed by Olga Arlauskas
Producer Nikita Tikhonov–Rau
Filmed under the auspices of the NGO PERSPEKTIVA
With financial support from the Open Society Institute
Subtitles by Michele A. Berdy
Translation funded by the U.N. Information Centre, Moscow
and Office of the U.N. High Commissioner for Human Rights.
© 2011 NGO PERSPEKTIVA