Original subtitles

Downloaded from YTS.MX

[PEOPLE CHATTERING INDISTINCTLY]

Official YIFY movies site: YTS.MX

RODNEY: I definitely knew something was strange,

but I-- You know, I don't think I...

thought so much about it.

WOMAN: Keep looking straight ahead.

RODNEY: I think there are always kind of shifts in your perception

and your vision.

WOMAN: And to the right.

RODNEY: But then I think experiences started to kind of accrue.

[WHIRRING]

[KEYBOARD CLACKING]

[SOUNDTRACK PLAYING]

RODNEY: I would be walking in a crowded subway platform,

and someone would suddenly appear

just right in front of me.

WOMAN: Down.

Perfect.

Move a little to the left

RODNEY: You know, I'd be at a party,

and someone would introduce me to someone.

You know, I'd smile. I'd say hi.

And then suddenly they would have a very strange,

uncomfortable look on their face.

And then they'd say:

"Aren't you going to shake my hand?"

That was just, like,

something really strange is happening.

WOMAN: Sit back.

[SUBWAY RUMBLING]

Just go straight ahead.

RODNEY: I went to this ophthalmologist,

and they ran a bunch of tests.

Then they basically were like, "Yeah, you have this very rare

genetic eye condition called retinitis pigmentosa."

Basically, your retina's deteriorating,

and you gradually get more and more blind

as it progresses.

[SOUNDTRACK PLAYING]

RODNEY: It started in late 1996,

and...

I was making films.

I loved films.

You know, I figured out this way

of kind of working with the crew

and letting them know that I was visually impaired.

Even though I'd made two features

being visually impaired, still, that element of the unknown.

You don't know when something's going to deteriorate

to the point where, you know,

you're unable to compose a shot from the monitor

and, you know,

you're unable to see the emotion clearly

on an actor's face.

I think I'm trying to figure out what it means

to work as a filmmaker,

where vision seems so central.

You know, knowing that mine will eventually go away.

The origins of the project were just, like, my--

My own fears about being able to continue as a filmmaker.

In a lot of ways, I feel like I'm just looking for guidance

in how to be a blind artist.

[PROJECTOR WHIRRING]

[SOUNDTRACK PLAYING]

[BIRDS CHIRPING]

JOHN: When I was 33,

I woke up one morning,

and I went, and I turned the hot water on,

and something akin to a freight train

hit me and knocked me off my feet.

My eyes went crazy.

The windows were spinning in circles,

and the room was jittering.

It was like being on an insane roller coaster.

So I fell on the floor, pulled the sheet down,

crawled on the sheet, and then,

like an inchworm, kept folding and unfolding

like I was doing sit-ups on my side,

and went slowly across the apartment.

And I slid down the stairs.

And throwing up the whole way.

[SIRENS BLARING] [HEART MONITOR BEEPING]

When I got to St. Vincent's, um,

there were so many people it was like a war zone.

There were-- You had to wait

sometimes two days to get a bed.

By that time, I was paralyzed on my left side,

and I couldn't hear out of one ear.

And I thought, "Oh, man."

I thought, "This must be the sound of the universe."

I could hear everything that was happening

inside of my body.

[RUMBLING AND GURGLING]

That was the beginning of my-- My change.

My agent called.

And I said, "What's up?"

She said, "Oh, Bergdorf-- Honey, Bergdorf called,

and they've got a full-page wedding dress ad

they want you to do. What should I tell them?"

I thought, "Oh, my God. I have nothing to lose now."

So I said, "Tell them I'm gay. Tell them I'm HIV-positive.

I had a stroke, I'm paralyzed, I'm going blind."

And she said, "Oh, gosh.

That's what you want me to tell them?"

I said, "Tell them that as soon as you hang up."

When I hung the phone up it was one of those moments.

Oh, I felt free.

[SOUNDTRACK PLAYING]

My mother, my sister and my brother came.

And they're standing at the foot of my bed.

And I said, "Why do you look so sad?"

I was exhausted and, like, trying to be up for them.

And my mother said:

"Oh, sweetheart, we were so proud of your career."

And I thought, "Were"?

And I said to my mother, "What makes you think

I'm not gonna take pictures anymore?"

She said, "What?" I said, "Yeah.

I'm gonna be taking pictures like crazy now."

[SOUNDTRACK PLAYING]

RODNEY: How long were you in the hospital?

JOHN: About a year and a half. RODNEY: Okay.

JOHN: I set a goal for myself.

Staying alive, learning how to walk,

learning how to take pictures with my assistants,

having to let go of my ego.

That I'm not the one framing the picture,

but because I was born verbose,

I'm very descriptive.

I always saw everything in my mind first.

You know, I came out of the hospital

with what I used to like to call my crescent moon.

A very thin sliver of sight on the bottom of one eye.

It was enough for me to locate things

and fake that I could see in the street

by following people.

I could see the feet. So I'd follow the feet.

I'd hide behind people and trail them.

What I see in my eye, I see aurora borealis,

you know, because it's so beautiful.

It's full of speckled light and color

and flashing in violet and orange.

And I see that right now,

my lovely optic nerve is still working.

But it has nothing to do, because there's no retina.

It has nowhere to flash the signal to,

so my brain is giving me color galore

every minute of the day and night for the last 20 years.

Inside there are shooting stars,

the Milky Way and mostly aurora borealis,

because it moves like that and shifts all the time.

They're like solar eruptions. They're really beautiful.

[SOUNDTRACK PLAYING]

JOHN: All those first hundreds of pictures

in those first months,

they poured out of a vessel like a libation.

They're already inside of me.

They were unlike anything I saw before.

But because I had traveled around the world

and seen all the great things I needed to see,

I had that visual vocabulary.

You know, I was lucky to have my sight until I was 30.

But, again, I realized I reached people

far more through beauty than through gore.

Even when I wanted to make The Stroke Seizure

with my friend Joao, it turned out beautiful,

because he was a dancer. I said, "This is what happened

when I had that stroke.

Can you give me your version of it?"

There's always some melancholy in there.

The quiet-- I'm never quiet.

The only time I feel quiet iswhen I have the shutter release

for the camera in my hand

Even though I had assistants with camera,

I could focus with my fingers, and that helped.

I was, like, Braille focusing,

where I used to use chopsticks and measure.

If I was by myself, figure out where

the head is in the center.

I was relentless.

And every time I had one of these realizations,

like, yes, I'm going to continue to take pictures.

Yes, it's the aurora borealis that I see.

No, I'm not gonna die,

because now there's a cocktail

and my immune system soared.

Every time I had a revelation like that,

it encouraged me to move forward in a quieter

and more direct way.

He's just mean to everything and everybody.

Um, but, you know, I didn't know Miriam yet,

and I had just done something with the same formula.

And it was like, oh, God, I don't want to become

a formula photographer, you know?

That's from... Ninety-nine.

The Night Watches.

I'm like a 99 kind of guy.

Yes, you are. [LAUGHS]

RODNEY: Um, this one has...

uh, I think it's Octavio

fondling your ears.

[CHUCKLES]

Fondling. Fondling.

This is a photograph of my dear friend Octavio.

And I took a lot of strength from him.

He lost his sight immediately.

From one day to the next, it was gone.

I've never seen a stronger human being

look immediately to the bright side and the comedic side,

and just take the whole thing in stride

in a way I couldn't possibly imagine.

Most famously, for me, he said to me, oh, man--

"Pa," he said, "You are going to be so happy

when you lose the rest of your sight."

I looked at him in horror.

And I said, you know,

"What on earth do you mean?"

He says, "You can stop worrying about it.

You're so worried about that little bit of sight,

it's ruining your life.

You'll see how free you're gonna be."

[SOUNDTRACK PLAYING]

I was starting to feel invisible.

I didn't feel like people could see me,

because I couldn't see them anymore.

And I use these to heal myself.

All these pictures are a part of my biography,

proving to myself

that I could still function in a way that was

not expected of a blind person

was really going to be the thing.

You don't need your eyes.

When I give a talk

to a particularly receptive audience somewhere, there are--

Somebody always asksduring the question and answer,

"How do you take the picture?What kind of camera do you use?

How do you do that--?"

I ask everybody to close their eyes.

And I go down the list slowly.

I said, "Every time I say a word,

I want you to see what I say.

Plum. Mother. Rose. Flower.

Sunset. House."

Then they open their eyes. I'm like, "Okay,

what didn't you see with your eyes closed?"

They're like, "Nothing." And then that's--

The point is well made.

It's so simple.

RODNEY: Can we do that?

Yeah, you want to do it? RODNEY: Yeah.

Okay, who's going to be the--? RODNEY: I'm closing my eyes,

you're looking at me, and you're doing it

in the way that you would do it. All right.

Film camera.

Car. A Lincoln Continental.

Asphalt. A tree pole.

The forest. Your mother. Your father.

Do I need to go on? An open book.

A glass of water.

Do you know, it's endless.

You have-- That is the mystery of all of this,

is that it's all inside your body.

[SOUNDTRACK PLAYING]

JOHN:Here's Octavio, who I mentioned a few minutes ago.

It was exhilarating for me to sit so close

to a happy, fully blind person.

Really beautiful.

The first time somebody called and said:

"We're doing this thing at the Metropolitan Museum of Art,

and we need some PWAs to come."

I looked at the phone and I was like, "What is that?"

I said, "What? What did you--? What?"

I was like, PW-- I'm like, oh, I'm a PWA now.

"Person With AIDS."

I didn't like that at all.

I went up the stairs.

She said, "Hey." I said, "What?"

She said, "You're the only PWA who showed up."

I went up, and I went "Ahem, ahem."

I bent the microphone forward and I started talking.

And it was like that flash thing.

The more I talked, the more words came into my mind.

I said that I had just come out of the hospital,

that one of the very, very troubling things about HIV

is the loss of eyesight for many people

at the end stage of AIDS.

Usually came the very last thing,

which is a loss of eyesight.

I said, "But, strangely,

I got my loss of eyesight in the beginning."

So I said, "I was able to live through that."

And then I said, "If anybody has a brother,

a son, a sister, a partner, a lover,

and they're losing their sight,

go to them immediately, be with them,

and let them know that their life isn't over."

And then in a big, dramatic moment,

I turned around, and I took my friend Sheila's arm,

and I slowly went up the steps. And--

Oh, man, sorry.

You know, like the sense memory of that is still so alive in me.

It's so beautiful that you can still see something,

and know you always will be able to.

But I keep-- I probably say it the tenth time,

you have such other venues in your mind and in your heart

that you can draw on your work from.

I've imagined a world of beauty.

And there's no litter.

People don't look tired.

Everybody looks the same as they always looked.

Nobody gets older or younger.

Everybody's hair looks great.

I don't want to get my sight back, exactly.

I don't want to sound too cavalier.

It would be interesting.

But I always think that I would probably throw up

if I got my sight back.

The last time I really saw the world

was in 1994.

You know, a lot's changed.

But it's fun to live in this bliss.

I haven't thought about these things this intently

in a long time.

They're so rich,

and they're so moving, still, to myself.

I'm so happy that I stayed on the planet

to experience them.

[SOUNDTRACK PLAYING]

[CRICKETS CHIRPING]

RODNEY: I don't wanna be in this liminal space.

For me, it's a place

that's completely scary and frightening.

It can be enraging.

I think I think of it as a restriction on--

On my freedom.

I wish that I could have the freedom that I had

before I was diagnosed.

[SOUNDTRACK PLAYING]

You know, it's hard to imagine that freedom might lie

in the other direction:

total blindness.

I mean, who knows, right? Maybe blindness is, like,

the reversal of being a baby,

and you're entering this new space

with all that you know

and all that you've seen inside of you.

That being said,

I'm trying to hold on to what I do have

for as long as possible.

I have less than 10 percent

of a normal person's visual field

in each eye

that's very, very focusedand concentrated in the center.

If I go like this...

I don't see my fingers until...

there.

And then there.

And then there.

Like a horse with blinders.

[SOUNDTRACK PLAYING]

I am interested in newer technology

and clinical trials and scientific exploration.

I mean, for right now it's about maintenance.

But I do think that there are potential breakthroughs

that are on the horizon.

It's almost like a waiting game for technology to advance.

The more that your vision deteriorates,

the more you deem things unsafe.

I was sitting on Amtrak, on my weekly commute.

And, you know, I was just tired and kind of dozing off.

And I looked up.

And it said Penn Station.

And so I quickly kind of gathered my belongings

and was trying to kind of get out

before the door closed.

And so I got up and, you know, had my cane.

There were two people behind me,

and...they were, like,

getting really, really anxious.

And they were like, "Hurry! Hurry! Hurry!

Move it! Go, what's wrong with you?

Move it!"

So I stuck my cane in the door

to kind of prevent it from closing.

And they were just being really aggressive,

like, pushing me, basically.

And then the door opens and they're like,

"Move it!"

And then I turned around and I was like,

"I'm fucking blind!"

Like, really loudly and aggressively.

And, um...

And the guy was like, "Sorry, sorry."

And he just felt really, really terrible.

But then I felt really weird just being, like,

expected to be able to kind of swiftly get,

you know, off the train.

It ends up it's Newark Penn Station

instead of New York Penn Station.

And so one guy was like basically helping me

to cross over to New Jersey Transit

to get the train to 34th Street.

I was just kind of like dozed and exhausted.

And the door opened to the train,

and I basically fell into the gap

between the train and the platform.

And, like, I literally--

The platform, like, came up to here.

Like, up to my chest.

And I was like, oh, my God.

And-- And luckily a couple of guys were like,

"Holy shit," and they, like, run over,

and they come and, like, pick me up from the tracks

and through this gap between the platform and the train.

And it was just, like, my leg was, like,

completely kind of scraped.

And-- And, you know,

there was, like, blood soaking through my pants.

And I was just like, oh, my God.

I just need to, like, be in my bed.

You know when you always hear that sort of, like,

"Mind the gap between...

Between the platform...

[LAUGHS]

...and the train."

And, like, that's a real thing.

I don't know, so I just thought about it

as one of those, like, special nights of frustration

that I sometimes experience.

[GUITAR PLAYING]

[MAN SINGING]

[SOUNDTRACK PLAYING]

KAYLA: Dance is an interstellar space activity.

Dance is not just motion.

Dance is... Is a gesture.

It's a memory that lives with us.

[BREATHING HEAVILY]

WOMAN:

I don't--

[LAUGHS] It doesn't take much.

It doesn't take much.

I mean...

KAYLA:

Girl...

You know, let me tell you... [LAUGHS]

You have a cleavage line. I never got one.

Yes, I need you to count to your frigging blessings

and go with it.

All right, I'm not gonna to go heavy.

KAYLA: Okay, what's that?

This is, um,, black liner for your inner eye.

Oh, okay. It's all good.

She's gonna be A-Okay.

Okay, blink.

You did it. Oh, okay, that's not bad.

All right. All right.

I don't care about that eye.

Is that---?

Yeah, this eye-- This eye--

It's there for decoration.

[LAUGHS] Really?

Okay, I'm going to have to go...

[SOUNDTRACK PLAYING]

Just because...

All right. Boom. She cute.

KAYLA: When I was born,

I only had functional seeing vision in one eye.

Around 4 or 5,

I remember going to the doctor and them saying,

"She needs to wear a patch."

I don't remember, necessarily, the specifics.

I just remember having to wear an eye patch

over my strongest seeing eye.

in order to make the other eye stronger.

Which never happened.

When I put the eye patch on,

I literally couldn't see anything.

So all I did was sleep.

And as I was growing up they're like,

"Well, we need to put you in something,

to keep you active,

to keep you engaged,

and not worried about the eyesight as an issue."

So my parents said,

"Well, let's put Kayla in dance classes."

[UP-TEMPO PERCUSSIVE MUSIC PLAYING]

Having more limited vision than other artists,

it gives me more access to feeling and sensation.

The visual of how I look is less important

than what I'm feeling.

So dirty.

My husband says, "What's the point having glasses

if you're going to keep them so dirty?"

Oh, well.

So I was born with vision

out of my right eye.

When I was in college,

that's when other conditions started to happen

with my seeing eye.

[SOUNDTRACK PLAYING]

We were driving at night,

and I really couldn't see the street signs.

My friend was like, "Watch out, watch out!"

She had to reach over and turn the wheel.

And she was like, "You didn't see that?

You were about to run off the road."

And I was like, "No, I really didn't see it."

So I went to my optometrist that I had when I was younger.

He told me that I had a disease called iritis.

Arthritis of the eye.

So I took the eye drops that were prescribed to me.

And I had to take them for quite some time

to get rid of that inflammation.

I would say maybe a year had passed,

and I go to the doctor.

And that's when they determined that because of the overuse

of the steroids to get rid of the inflammation,

it had given me glaucoma.

[SOUNDTRACK PLAYING]

[INHALES DEEPLY]

[EXHALES]

[SOUNDTRACK PLAYING]

RODNEY: I was just wondering about some of the challenges

as a visually-impaired dancer.

KAYLA: Being, like, on the same counts

with other dancers is really hard.

If I'm having to use my peripheral.

I mean, meaning I don't have anything on my left side.

So if you're a dancer on my left side,

we're not gonna be together.

And then the ones that are on my right,

you know, unless you're catty-corner,

I need to, like, turn my head.

Spotting? Yes, I can.

But what good is it really gonna do me?

When a teacher is, like, doing moves

and it's, like, spatial,

and we're moving upside down and in and around,

and I'm just like, "Dude, no."

I guess I keep asking myself

the questions when I dance.

Like, why...

Don't pretend.

Like, right?

When you are doing something and you can't actually see them

to be in time with them,

but what-- Who is that for?

You know what I mean? Like, who am I pretending for?

If that's what I need,

that's what I need to give myself.

I mean, just theater lighting is challenging.

If I have to enter in a blackout? No.

Someone needs to take my hand

and walk me to where I need to start.

Which means that there has to be some level of trust.

[INHALES AND EXHALES DEEPLY]

My best dancing

is when my eyes are closed.

[THUNDER CRASHING]

[HEAVY BREATHING]

I remember waking up one morning,

and I was checking my phone to check the time.

And I couldn't see the time.

And...

You know what? I blinked.

Because sometimes when I wake up,

um, my vision takes a while to adjust.

It's, like, a little blurry.

But that was not the case.

And I turned on the television.

Um, and I couldn't read the subtitles.

And I looked at a piece of mail,

and I couldn't read the letters on the page.

Um...

[VOICE BREAKING] And that was really scary.

Because even throughout, like, the journey of, like,

my-- All my diseases,

it had never gotten to the place

where I just really couldn't see.

[HEAVY BREATHING]

Getting around the city,

I just did it by muscle memory.

Like, I really couldn't read subways stops.

This is, like, three months of me not being able to see.

It was hard to function.

I needed a really invasive procedure,

where they had to go in and cut the eye.

Obviously, I was really terrified.

So I go to a new doctor.

She says, "It's possible that you may need this surgery...

but I want to try something else first

that's least invasive.

It's, you know, not as intense."

WOMAN: Green blinking light.

I want you to focus on that light at all times.

KAYLA: "It's likely not to work, but...

let's give it a try."

And look down.

Look to the left.

And to the right.

Ooh.

Are you feeling okay?

Yeah. I'm nervous.

Don't be nervous. Don't be nervous.

We're going to do a couple of more exams,

and just give me a few minutes.

I'll let you sit and dilate, and I'll be back, okay?

Okay. Thank you. All right. You're welcome.

KAYLA: I won't forget.

I came home,

and I was laying on the couch...

[SOBS]

...and I took, like, the sunglasses off

that they give you.

And I just turned on the TV...

and I can see it.

I was just feeling so much gratitude.

[SIGHS] Um...

Went back the next day.

[SNIFFLES]

And pressure was good.

I could see.

[SNIFFLES]

You know, just after that, I was just, like,

wow...

That was the longest, like, three or four months of my life.

And I was so depressed.

I had...

no...

[SNIFFLES]

I was really ready to kill myself at some point

in those three to four months.

[CHANTING IN FOREIGN LANGUAGE]

And I just remember saying to myself, like...

[SIGHS]

...there's some healing to be done

through this process.

And, uh, how can I use my art form

as a way of sharing what it is that I'm experiencing?

I never fully existed and acknowledged, like,

this aspect of who I was.

I mean, that was, like, the birth ofNearly Sighted.

It gave me, I mean, more permission

to tell my story,

and to learn about other people's stories.

To, like, value difference.

[WOMEN CHANTING]

So I started to raise funds

to pay each of the choreographers.

It was important for me to have black women,

because, yes, it was about my vision.

But it's about what other stories

are not out in the world being told

in the masses in concert dance.

And those are of other black women choreographers.

Each interaction that I had with the women

really enhanced my personal healing

of my eyesight, sincerely.

All right, guys. Talk to me.

So whatever view that they see,

they're gonna see some part of you.

Mm-hmm. Something. Yeah.

Well, that's the idea, right? Like, the peripheral--

You may not catch-- I don't catch everything.

Yeah. [LAUGHS]

And whatever you get is still beautiful in that moment.

KAYLA: Mm-hmm. What about the bath?

The ritual? Did it take too long?

Well, I don't want to bore people--

But don't you hate when you go to dances

and you're just like, "Oh, my God! Finish!"

No?

[WOMAN LAUGHS] No?

Well, hey, let's play it and see what happens.

Like, I don't-- But I like the-- The...

trying to-- To wear the glasses while dancing.

And that just doesn't work.

Again, thank you, those of you, you know,

I'm not going to break down today.

I'm just so ready to get this thing over with.

But I'm just so focused on just having fun tonight

and just sinking in, whatever that is.

If I break down, don't worry.

I got myself. I'm good.

I'll-- If I tell you to stop the music, stop the--

Like, whatever I'm--

Who knows what I may do tonight?

That's what kind of mood I'm in, okay?

[ALL LAUGH]

[ALL APPLAUDING]

[CLAPPING RHYTHMICALLY]

ALL [SINGING]: Go, music

Go, music

Hey

WOMAN: Go, Kayla's show.

MAN: We're proud of our artists for really challenging

who it is that we are in the world.

And tonight, we have Kayla Hamilton.

[AUDIENCE CHEERING]

[SOUNDTRACK PLAYING]

KAYLA: It was important for me

for the audience to wear the eye patches,

to give them a sense of a different perspective.

Like, forcing them to see in a different way.

There is something about shifting your own perspective

to witness something, and how does that experience

change, enhance, make you question

how it is that you see?

[WIND GUSTING]

[SOUNDTRACK PLAYING]

RODNEY: Sophie Calle did this book calledBlind.

It starts out, "I met people who were blind.

I asked them what their image of beauty was."

"One evening in November 2004, I went to bed,

"and when I woke up the next day,

all I could see was light."

It's interesting that people think of blindness as black.

But so often it's actually described

as completely white.

"On the Riviera, I was told that you can see the mountains

"reflected in the sea.

"It must be beautiful

when landscapes blend together like that."

"My mother is beautiful because she's tall,

and her hair goes down to her bottom."

I actually remember...

telling my mom that I needed a cane.

And, you know,

her buying me, like, a walking cane

as opposed to, like, a red-tipped blind man's cane.

You know, as almost like a way of passing.

Of, like, giving me what I needed,

but then also not letting the world know that I was blind

or, like, visually-impaired.

You go through this process of passing as sighted

for, you know, as long as you can.

As long as you feel comfortable.

I'm already within one of the most racist,

homophobic industries that exists, right?

So, like, it's sort of like adding another element

to an already difficult circumstance.

I was afraid of the stigmas,

and the ways in which that might, like,

negatively affect future career possibilities.

So for a while, I think that that

was definitely affecting my level of, like, honesty,

of whether or not people should know

whether or not I felt comfortable

in public with, like, a cane,

because someone in the industry might see me.

[SOUNDTRACK PLAYING]

And then it just becomes so exhausting

that it just--

It's just, like, no longer tenable.

[LAUGHS]

So I think for a long time,

that's kind of why I didn't want to be a part of the film.

Because I was afraid to visually be represented

onscreen with a cane asa visually-impaired individual.

And then I just started to feel disingenuous

to not be part of the film.

[KEY CLICKS IN LOCK]

I am going to present the two special jury prizes.

The first one is an award for passion of subject.

It goes to a film that pushes forward

the cultural discourse of its subject

with energy and passion.

And the special jury prize

goes toBrother to Brother,

directed by Rodney Evans.

[AUDIENCE APPLAUDING] [ROCK MUSIC PLAYING]

Wow, this is such an honor.

I really want to dedicate this award, also,

to just the hope that this represents an opening up

and an acceptance of more complex

and layered portrayals of African-American life.

Thank you very much.

[AUDIENCE CHEERING AND APPLAUDING]

I would say in the last five or six years,

there has been further deterioration.

And I think just with every film,

I sort of come to it

with a new set of circumstances.

And I have to sort of meet the project

where my condition is,

and let people know where it is

and what kind of help I need in certain areas.

If I need a monitor right next to me

that's of a certain size.

If I need a clear path to the actors.

Holy shit, what happened?

RODNEY: Just asking for what you need, really,

and not being ashamed or afraid.

Were there any witnesses? [MUTTERS INDISTINCTLY]

[SOUNDTRACK PLAYING]

RODNEY: The reason that I'm a filmmaker

is 'cause I want people to feel something.

Tell me.

RODNEY: And the way that I can maneuver that

and manipulate that is through the actors' performance.

Hello, Mom?

What's going on?

RODNEY: I tend to be very interested

in the face as a landscape,

and how emotions shift on someone's face.

And he just kept screaming,

"Not in my house."

RODNEY: Ironically, I think it is helpful to me

to not have peripheral vision,

because that way I don't actually think so much

about the entire apparatus that goes into production,

because I literally don't see it.

So, you know, I think in that regard

my visual impairment actually has been helpful

in getting to the heart of the actors' performance.

[ALL APPLAUDING, CHATTERING INDISTINCTLY]

MAN: That was intense. WOMAN: That was awesome!

Bravo!

RODNEY: I think that there's an added sense of urgency

to making films now while I have the vision that I have.

The general prognosis with people with RP

is that in your 60s,

the disease will generally start to progress.

And, um, you know, so that's not a lot of time.

[SOUNDTRACK PLAYING]

RYAN: There's such a weight on it when you are...

When you first enter the idea you're gonna lose your sight,

it feels like a terminal point.

You know, that you're gonna goto this place called Blindness,

and that's where you stay.

But there is something on the other side.

It's just a different way of living.

It's a different point of view.

[DOOR CLOSES]

[PEOPLE CHATTERING INDISTINCTLY]

What's our head count?

Somebody quick head count for me.

STUDENT: Fifteen. Fifteen?

Okay, we're in.

So, what I'm going to do is before next class,

I'm going to send you a link to a Moth story.

And, um, what we're going to do next time,

is we are going to actually map it out.

See if we can map out the beats of a story together,

and see how--

It's sort of like, you know,

retro engineering the outline of the story.

The Mothis a show that started in New York,

I think, maybe in the '90s.

They have a podcast.

And our first exercise

is based on the kind of story they would do.

They do true stories.

So your exercise is to write a story,

tell a story that is true.

It has to have happened to you.

And the length I'm gonna give you is about a thousand words.

Um...

[CLEARS THROAT]

So when I was 18,

and the doctor told me I was gonna go blind very slowly,

the thing he didn't mention

is that it was gonna be super boring.

[AUDIENCE LAUGHING]

I mean...

like, you might know,

but there isn't much to look at.

So I started doing research.

And I wanted to travel the world to educate my senses.

Sort of broaden their horizons.

And I wanted to travel, you know,

with what I thought was a fairly simple question,

which is, if I could go anywhere just to touch something,

what would I go touch?

I came across this little festival

in a town called Sweetwater, Texas,

where every year they hold

the world's biggest rattlesnake roundup.

[AUDIENCE CHUCKLES]

I know.

So I decide I'm gonna go with my brother, Michael,

because he was the only person ridiculous enough to go.

And we get inside the door,

and he freezes in terror.

And he says,

"I don't mean to exaggerate...

but it's all snake."

Which is a cruel thing to say to a blind person.

[AUDIENCE LAUGHS] So I said to my brother,

"I can't do this. We have to leave."

He's like, "Let's go to the back.

"We'll register for the hunt at the table,

and then we'll leave."

The next day, my brother and I go out on the hunt.

Standing there on the side of the road,

Jeb gave us our only instructions.

And he began this way. He said...

"They are everywhere.

You will keep your eyes down at all times."

[AUDIENCE LAUGHS]

My brother leaned over to me, he said,

"You are so screwed."

[AUDEINCE LAUGHING]

So my brother and I go back to the rodeo,

and we discover if you say to somebody you're blind

and you're from Canada, you can do anything.

I judged the rattlesnake cook-off.

People gave me their guns

and let me shoot.

A blind guy from Canada is in the beauty pageant,

and I am holding my first snake.

And I am skinning it.

And when I'm done,

the guy's who's helping me puts something in my hand.

It's small, about the size of a chestnut.

And then it beats.

And I felt-- I didn't know--

I felt what life is,

which is it comes from just this little thing,

this twitch.

And it's just a moment where you think it stopped.

And then it just keeps trying.

And when I was done,

I put my bloody palm to the wall.

And I am not worried about boredom,

because the world is just that horrifying

and strange and loud.

Thanks.

[AUDIENCE CHEERING AND APPLUAUDING]

My diagnosis was on my 18th birthday.

That was when I was officially diagnosed with RP.

The symptoms of ithad been there for years prior.

I was with my girlfriend, for example,

and we'd gone to a high school dance.

We were leaving the parking lot,

and it was this long road in front of the school.

Went across the lane I should have been in,

and was driving in the oncoming lane.

And I guess my girlfriend thought

I was just playing a joke. Am I playing chicken

to see how long I could do this without her cracking?

So she said nothing.

We drove in this oncoming lane together,

quietly together.

I could see, right in front of my car,

where the headlights were illuminating most intensely,

then I could see these lights in the distance

on an oncoming car,

but I couldn't really see much in between.

We got closer and closer to this thing,

and I wasn't moving,and she wasn't saying anything.

And, you know, last minute she just said, you know, "Move!"

And she grabbed the wheel,

and we go back into the actual proper lane.

And this truck goesbarreling by, blowing its horn.

We are now in that moment in the car

where I've just about killed us,

and I don't know how to explain it.

And she is fuming.

That was the end of that relationship.

[LAUGHS]

So we went to get my glasses checked

to see if my prescription was off,

and that's when we found out,

because he shined a light in my eye,

and it didn't come back the way it should.

And so he did more tests and realized

my retinas were starting to deteriorate.

[ROCK MUSIC PLAYING]

I started going to the nightclubs.

You know, at the time,

you know, I had the white cane but I wasn't using it.

So at the end of the day

of trying to pass as a sighted person,

and the exhaustion of that,

if you go to a dark nightclub

where people bang into each other

and you disappear into that

and you don't seem any different,

that was such a relief.

It was just such relief.

And to be physical,

to just throw yourself around on a dance floor

into people with abandon, and not try and shuffle along

and not bump into people as I did the rest of the day,

I mean, that was one of its main functions for me.

And the second thing it gave me was just the attitude

of that music. Um...

It's a great way to cope with embarrassment.

So when you're the guy that pisses between the urinal,

it's much better if you're a punk rock guy

than if you're not.

Nonfiction, which we're going to start with,

is the art of taking away.

It's the art of omission.

So really, it's closer to sculpture that way.

You're taking raw material,

and you are removing the unnecessary

to reveal the story that's inside it.

And we already talked a little bit about how

to search for the stories. Remember?

Looking for particular emotional nodes.

Embarrassment, we like to read about.

We like to read about humiliating things.

Frightening things.

Dramatic things.

There's a writer in Toronto named Brian Fawcett,

who I really admired.

He came to my reading,

and it was from my first book of poems.

And I got up on stage.

At that time, what I would do is I--

I asked them to make sure they could aim a light

really intensely on the book.

Then I'd have it up really close to my face.

And I had them sort of partially memorized.

Then I would try and readthem, like everybody else does.

You know, I started reading, and I just kept flubbing it

and getting lost, and couldn't follow the letters anymore.

And it was super embarrassing.

And I remember Brian shouted from the back of the room.

He said, "Slow down, do it again.

They're gonna learn something."

And I did it over and over and over.

And I made the audience sit through

watching a blind man try to read.

Afterwards, I realized what he meant.

I was pretending.

I was trying to pretend I could do what sighted people do,

and what the audience was learning

was how much work I was doing trying to pass.

And that was something

I had not admitted to myself, really, yet.

I had that moment where I had a point of view now.

Like, I realized blindness is a point of view on the world.

It's not something I should avoid.

It's something I should look from.

And I should make it my writerly point of view.

[SOUNDTRACK PLAYING]

I didn't know what I was gonna write next,

and Brian said to me,

"Write me some little pieces for the website

about what it's like to be blind.

But don't jam your head in your navel

and tell me about your sad feelings."

He was the one who said to me,

"Write about what it's like to be a blind person in IKEA."

And out came these little pieces.

And it was funny.

I realized, it was the cure.

Like, it was the cure I'd been looking for.

Writing about it, it took all the edges

off what happened to me.

It didn't make it so personal or threatening.

It now became slapstick.

And the world couldn't hurt me when I was narrating it.

I spent eight months at my kitchen table.

I would think of subjects.

You know, blindness and such and such.

And then try and recall the anecdotes of my life

that could speak to those issues

and track the change that had happened in me,

from a sighted person to a blind person.

And just write down those stories.

And I became so addicted

to doing it.

I swear, that's the moment I became a writer.

It was settling me inside my skin

in a way it hadn't before.

You know how exhausting it is when you're trying to...

Compensate. Compensate,

and anticipate, and retrofit.

Yeah. It's exhausting.

Yeah.

I just don't want to do it anymore.

Ever again.

RODNEY: Yeah, I was going to say...

RYAN: That's hard-- I told them here.

RODNEY: Yeah. RYAN: Before they hired me.

The computer tech wasn't quite there yet, but it was close.

I thought it was pretty risky of them to do it.

RODNEY: Yeah.

But I feel what you're saying, because...

It's sort of like if you tell people...

does it help you get the job?

Probably not. Mm-hmm.

Could it hinder you getting the job?

Probably so. Right.

RYAN: You really control the tone.

RODNEY: Yeah. RYAN: And their confidence.

RODNEY: Right.

'Cause if it's not a big deal to you,

it won't be to them. RODNEY: Yeah.

You know, but I remember they had that reaction

of, like, how are you going to do it?

Because they'd never had to consider that before.

And if you have answers...

RODNEY: Right...

Yeah.

[COMPUTER CHATTERING RAPIDLY]

Did you understand any of that?

[LAUGHS] RODNEY: No.

So you set the rate of-- The speed of the voice

as fast as you can comprehend.

Yeah, I can go faster. You can?

But what I find

is I can't think as fast as I can listen to it.

I have this very ongoing, odd triangular relationship

with the computer voice as my mediator to everything.

But I'm very superstitious about it, so I don't change it.

And so my writing style has emerged as very...

um, oratory, you know, it's very oral.

That's my reading experience.

You know, sighted people read,

they have a voice in their head.

And I don't have one.

I haven't had one for years,

because I never read to myself.

That's the child care center.

That's where Tess went.

We had this thing where I was taking her to day care,

and she was riding in the baby backpack.

And she just said, "Bear."

"Bear. Bear. Bear"

And I was, like, "Where?"

[BOTH LAUGH]

Because we do get them on campus.

And she was freaking out. Uh-huh.

And she started crying.

And I'm like, "This way?"

And I'd sort of go one way, and she'd get more upset.

And it turns out that she had dropped her teddy bear.

Ah. And that's what she was--

[LAUGHING] We were moving away from it.

Just a bear.

Here, I'll take your elbow. I remember--

You want to take my other elbow?

I'm okay. You're good?

RYAN: There's a different quality

in my life now that I've become a father

and a husband than when I was just on my own,

being stupid in nightclubs.

In going blind, you enter that realm of disability,

sort of swinging your sledgehammer

and your weight around.

And, you know, I've been blind for so long now,

and I-- I just don't even think about it that much,

in some ways.

[SOUNDTRACK PLAYING]

Called Café Napoli.

Yeah, it's 15 years.

Fifteen years?

Always the same table? RYAN: Yeah.

RODNEY: Yeah? RYAN: Yeah, I sit either--

When I switch projects, I switch sides.

Yeah, like right now, I would be sitting there.

I think writing down your life changes the life you live.

Um, you know, you...

you transform it, in a way.

Your memories ossify.

You know, the way you write a memory becomes the memory.

I had not thought of blindness as funny

prior to writing it down.

You look at the situation of losing your sight,

and that kind of angry place that I was.

Writing gave me a feeling of control over my life

I didn't have before.

It allowed me to control how I feel

about the things that happen to me as a blind person.

And they allowed me to control my attitude

towards the world in a different way.

[SOUNDTRACK PLAYING]

Okay...

Maybe that's enough.

[SOUNDTRACK PLAYING]

RODNEY: I am going to be doing

a 10-day procedure

that involves neuro-ophthalmology,

which is electrical stimulation of the brain.

I am cautiously optimistic.

You know, I'm hopeful that I'll be able to restore

some of my peripheral vision.

So here we are in Reykjavík,

uh, having a delay in our travel to Berlin,

to the Center for Sight Restoration.

I feel like I have, um,

really...

sort of run out of options

in terms of the treatments in the States.

And I'm doing what I can to maintain

the vision that I have.

But I don't feel like there's necessarily

that much more that I could be doing.

[SOUNDTRACK PLAYING]

FEDOROV: We did two examinations.

And what we saw, of course, the damage is severe.

Yeah. Ja.And then somehow,

machine provides information,

how much vision preserved. Yeah.

You have, for your left eye, 9 percent.

Uh-huh. And your right eye

has 8 percent of preserved vision,ja.

Okay.

Of course, it's not too much.

Yeah. And we can see very clear

that in both eyes, there is tunnel vision.

Mm-hmm. Ja,very limited.

But we saw many patients when,

even they came to us with just tunnel vision,

after treatment they realize that side vision improved.

[SOUNDTRACK PLAYING]

RODNEY: There seems like a real...

difference between the haves and the have nots

in terms of, like, access to medical treatment.

I feel really fortunate

to have met someone

who knew about this treatment,

and to be here.

Do you need help for the train?

Uh, no. I think my friend is gonna help me.

But she's filming something.

Ah, okay, okay. [LAUGHS]

But maybe you could--

Do you buy a ticket for the train?

Yes. Here?

Yes, in the machine.

Do you have yours? Yeah, I do.

[MACHINE CHIMES] WOMAN: That's it.

RODNEY: Oh, okay, great. Thank you.

WOMAN: To Alexanderplatz is that way.

Okay, thanks.

I think about what it means to be disabled and single

in your 40s,

and to have potential partners look at you

with a blind cane,

and automatically think that that is...

um, a potential burden,

or that they're going to have to be a caretaker.

It's not sexy.

I don't think caretaking is sexy.

You know what I mean? I don't think a lot of people

think of disability as something that they want

to necessarily engage with in a relationship.

So those are the things I think about.

Um, and potential beneficial results

from this treatment to counteract

those kind of attitudes and prejudices.

Hi. Rodney.

Anarosa. Nice to meet you.

Okay, we have like a sandpaper. Uh-huh.

I need to scratch slightly your skin.

Oh. Okay. Not too much. Not too much.

But-- Don't mess with the beauty.

[LAUGHS]

Just kidding. Okay.

You felt it?

Maybe you're taking the years off my...

Mm-hmm.

So we're going to measure

the tiny little electric currents your eyes generate.

Um, to do this test,

you will need to sit first 20 minutes in the dark.

Okay.

FEDOROV: Light on.

[SOUNDTRACK PLAYING]

Heterosexuality is the opiate of the masses!

[GROANING]

That was an intense last treatment.

WOMAN: Really?

I'm kind of excited for it to be over.

Before and after,ja?

Practically in the middle is the same pattern of response.

Yeah. But then, we can define

three islands

as totally new, uh, areas.

Yeah. Before, it was blank.

Yeah. It says not just

your central area is activated.

It seems to be around the center there is some activity.

Yeah? Ja?

Do you feel any changes in your sight subjectively?

Do you feel that your sight looks now--

There is some fluctuations?

Can you tell me about that?

I-- It's hard for me to say.

Like, I don't-- I don't feel like it,

or I've felt the major changes.

It just-- It feels similar.

It's a little hard to tell. Understood.

Okay. Correct. Because, you know,

your disease is, as I told you,

is not initial stage.

It's much advanced stage.

Yeah. That means in this condition,

we would expect very slow, slower change--

Like, you expect slow, slower improvement.

Like a step-by-step.

[SOUNDTRACK PLAYING]

RODNEY: I'm, like,

expecting the changes to happen really fast,

but I'm not...

Even though they can see the changes

in the testing that they do...

um, I'm not really feeling the changes

in my daily life.

[CLEARS THROAT]

So...

[SOUNDTRACK PLAYING]

I'm feeling kind of...

strangely serene about it.

Whatever happens, happens.

And I'm just going to kind of, um, take it as it comes.

If it doesn't beneficially affect my vision,

I feel like I'm able to...

function in a way that, you know,

that I feel pretty happy and pretty, um, sustained

in-- In what I'm doing.

I think I always make films

about the things that are the scariest things

for me to deal with.

The project gave me a way of functioning

and a way of...

of not just acquiescing to the condition,

or being self-pitying,

but just making work

about something that I was trying to figure out.

Learning from the experiences of each of the other artists

that I filmed has been just really, really helpful

in terms of thinking about options for the future.

You don't have to stop doing what you love

and what you're passionate about.

I think each of the artists said in various ways,

the idea of seeing with your eyes,

but you also see with your heart and with your head...

that those things are-- Are in constant combination.

That it's not just an ocular thing.

It's not just about...

shot composition

or spectacle.

Sometimes it's about the idea,

and about the imagination,

and how those things get put together

to form vision.

I think whatever happens, I'll always believe that

and hold on to that.

[SOUNDTRACK PLAYING]

[SOUNDTRACK PLAYING]

WOMAN [SINGING]: I'm an alien From inner space

They can't read my mind All in my face

No one knows

I'd rather spend my days

Alone on my pillow

I don't careWhat they say

I've been waiting For so long

Call me by my name

They keep telling me I'm wrong

We are not the same

I don't belong here

I don't belong here

I'm feeling high

My money's gone

Can't find my home

I want to go

To my own private planet I've been dreaming of

Little moon in my head I be moving on

Up and away

Up and away

Just 'cause I'm born here

Don't mean I'm from here

I'm ready to run

I'm rocket to sun

I'm way up

I'm way up

Just 'cause I'm born here

Don't mean I'm from here

I'm ready to run

I'm rocket to sun

I'm way up

I'm way up

I'm an alien From inner space

They can't read my mind All in my face

No one knows I'd rather spend my days

Alone on my pillow

Earth's getting old

So color me gone

I'm ready to run

I'm rocket to sun

And it ain't so bad

So don't look so sad

Just 'cause I'm born here

Don't mean I'm from here

Just 'cause I'm born here

Don't mean I'm from here

I'm ready to run

I'm rocket to sun

I'm way up

I'm way up

Just 'cause I'm born here

Don't mean I'm from here

I'm ready to run

I'm rocket to sun

I'm way up

I'm way up

I

I

Ooh, I

Ooh, I