"Good" and "bad" are incomplete stories we tell ourselves | Heather Lanier

Prevodilac: Ivana Krivokuća Lektor: Tijana Mihajlović

There's an ancient parable about a farmer who lost his horse.

Postoji stara parabola o seljaku koji je izgubio konja.

And neighbors came over to say, "Oh, that's too bad."

Komšije su došle da kažu: „O, baš loše.“

And the farmer said, "Good or bad, hard to say."

A seljak je rekao: „Dobro ili loše, teško je reći.“

Days later, the horse returns and brings with it seven wild horses.

Danima kasnije, konj se vratio i sa sobom doveo sedam divljih konja.

And neighbors come over to say, "Oh, that's so good!"

Komšije su došle da kažu: „O, to je baš dobro!“

And the farmer just shrugs and says, "Good or bad, hard to say."

A seljak samo slegne ramenima i kaže: „Dobro ili loše, teško je reći.“

The next day, the farmer's son rides one of the wild horses,

Sledećeg dana, sin seljaka ode da jaše jednog divljeg konja,

is thrown off and breaks his leg.

bude zbačen sa sedla i polomi nogu.

And the neighbors say, "Oh, that's terrible luck."

Komšije kažu: „O, baš loša sreća.“

And the farmer says, "Good or bad, hard to say."

A seljak kaže: „Dobro ili loše, teško je reći.“

Eventually, officers come knocking on people's doors,

Na kraju dođu oficiri da kucaju ljudima na vrata,

looking for men to draft for an army,

tražeći muškarce da ih regrutuju za vojsku,

and they see the farmer's son and his leg and they pass him by.

vide seljakovog sina i njegovu nogu i zaobiđu ga.

And neighbors say, "Ooh, that's great luck!"

Komšije kažu: „O, baš velika sreća!“

And the farmer says, "Good or bad, hard to say."

A seljak kaže: „Dobro ili loše, teško je reći.“

I first heard this story 20 years ago,

Prvi put sam čula tu priču pre 20 godina

and I have since applied it 100 times.

i od tada sam je primenila 100 puta.

Didn't get the job I wanted:

Nisam dobila posao koji sam htela:

good or bad, hard to say.

dobro ili loše, teško je reći.

Got the job I wanted:

Dobila sam posao koji sam htela;

good or bad, hard to say.

dobro ili loše, teško je reći.

To me, the story is not about looking on the bright side

Za mene, u ovoj priči se ne radi o gledanju sa vedrije strane

or waiting to see how things turn out.

niti čekanju da bi se videlo kako će nešto ispasti.

It's about how eager we can be to label a situation,

Radi se o tome koliko možemo imati potrebu da prilepimo etiketu situaciji,

to put concrete around it by judging it.

da je zatvorimo u čvrste okvire prosuđujući o njoj.

But reality is much more fluid,

Ali stvarnost je mnogo promenljivija,

and good and bad are often incomplete stories that we tell ourselves.

a dobro i loše su često nepotpune priče koje pričamo samima sebi.

The parable has been my warning

Ova parabola je bila moje upozorenje

that by gripping tightly to the story of good or bad,

na to da, čvrsto se držeći priče o dobrom i lošem,

I close down my ability to truly see a situation.

gušim svoju sposobnost da istinski sagledam situaciju.

I learn more when I proceed and loosen my grip

Više naučim kada krenem, popustim stisak

and proceed openly with curiosity and wonder.

i otvoreno nastavim uz radoznalost i čuđenje.

But seven years ago,

Ali pre sedam godina,

kada sam bila trudna sa svojim prvim detetom,

when I was pregnant with my first child,

I completely forgot this lesson.

sasvim sam zaboravila ovu lekciju.

I believed I knew wholeheartedly what was good.

Iskreno sam verovala da znam šta je dobro.

When it came to having kids,

Kada se radilo o rađanju dece,

I thought that good was some version of a superbaby,

mislila sam da je dobro neka verzija superbebe,

some ultrahealthy human who possessed not a single flaw

nekog ultrazdravog ljudskog bića koje nema ni jednu jedinu manu

and would practically wear a cape flying into her superhero future.

i koje bi praktično nosilo plašt koji bi ga odneo u budućnost superheroja.

I took DHA pills to ensure that my baby had a super-high-functioning,

Uzimala sam pilule sa DHK da bih se osigurala da moja beba

ima mozak koji super funkcioniše, koji je izuzetno pametan,

supersmart brain,

and I ate mostly organic food,

jela sam uglavnom organsku hranu,

and I trained for a medication-free labor,

vežbala sam za porođaj bez lekova

and I did many other things

i radila sam mnogo drugih stvari

because I thought these things would help me make not just a good baby,

jer sam mislila da će mi pomoći ne samo da stvorim dobru bebu,

but the best baby possible.

već najbolju moguću bebu.

When my daughter Fiona was born, she weighed 4 pounds, 12 ounces,

Kada se moja ćerka Fiona rodila, imala je četiri funte i 12 unci

or 2.15 kilograms.

ili 2,15 kilograma.

The pediatrician said there were only two possible explanations

Pedijatar je rekao da postoje samo dva moguća objašnjenja

for her tiny size.

za to što je tako malena.

"Either," he said, "it's bad seed,"

„Ili je loše seme“, rekao je,

"or it's bad soil."

„ili je loše zemljište.“

And I wasn't so tired from labor to lose the thread of his logic:

Nisam bila toliko umorna od porođaja da bih izgubila nit njegove logike:

my newborn, according to the doctor,

moje novorođenče je, prema doktoru,

was a bad plant.

bilo loša biljka.

Eventually, I learned that my daughter had an ultra-rare chromosomal condition

Na kraju sam saznala da moja ćerka ima izuzetno retko stanje hromozoma

called Wolf-Hirschhorn syndrome.

zvano Volf-Hiršhornov sindrom.

She was missing a chunk of her fourth chromosome.

Nedostajao joj je deo četvrtog hromozoma.

And although my daughter was good --

I mada je moja ćerka bila dobro -

she was alive,

bila je živa,

and she had brand new baby skin

imala je novu bebastu kožu

and the most aware onyx eyes --

i vrlo svesne oči poput oniksa -

I also learned that people with her syndrome

takođe sam saznala da ljudi sa njenim sindromom

have significant developmental delays and disabilities.

značajno zaostaju u razvoju i imaju invaliditete.

Some never learn to walk or talk.

Neki nikada ne nauče da hodaju ili govore.

I did not have the equanimity of the farmer.

Nisam imala staloženost seljaka.

The situation looked unequivocally bad to me.

Situacija mi je izgledala nedvosmisleno loše.

But here's where the parable is so useful,

Ali, evo gde je parabola korisna,

because for weeks after her diagnosis, I felt gripped by despair,

jer sam nedeljama nakon dijagnoze bila obuzeta očajem,

locked in the story that all of this was tragic.

zaglavljena u priči u kojoj je sve bilo tragično.

Reality, though -- thankfully -- is much more fluid,

Stvarnost je, doduše - srećom - mnogo promenljivija

and it has much more to teach.

i ima mnogo čemu još da nauči.

As I started to get to know this mysterious person who was my kid,

Kada sam počela da upoznajem tu misterioznu osobu od mog deteta,

my fixed, tight story of tragedy loosened.

popustila je moja fiksirana, kruta priča o tragediji.

It turned out my girl loved reggae,

Ispostavilo se da moja devojčica voli rege

and she would smirk when my husband would bounce her tiny body up and down

i kezila se kada bi moj muž bacakao njeno sićušno telo gore-dole u ritmu.

to the rhythm.

Her onyx eyes eventually turned the most stunning Lake Tahoe blue,

Njene oči noje oniksa su na kraju poprimile

najdivniju plavu boju poput jezera Taho,

and she loved using them to gaze intently into other people's eyes.

i volela je da njima intenzivno zuri drugim ljudima u oči.

At five months old, she could not hold her head up like other babies,

Na uzrastu od pet meseci, nije umela da drži glavu uspravno kao druge bebe,

but she could hold this deep, intent eye contact.

ali mogla je da održava dubok, intenzivan kontakt očima.

One friend said, "She's the most aware baby I've ever seen."

Jedan prijatelj mi je rekao: „Ona je najsvesnija beba koju sam ikad video.“

But where I saw the gift of her calm, attentive presence,

Ali tu gde sam ja videla dar njenog mirnog, pažljivog prisustva,

an occupational therapist who came over to our house to work with Fiona

okupaciona terapeutkinja koja je došla da radi u našoj kući sa Fionom

saw a child who was neurologically dull.

videla je dete koje je bilo neurološki tupo.

This therapist was especially disappointed

Ova terapeutkinja je naročito bila razočarana

that Fiona wasn't rolling over yet,

jer se Fiona još nije prevrtala,

and so she told me we needed to wake her neurology up.

pa mi je rekla da moramo da probudimo njenu neurologiju.

One day she leaned over my daughter's body,

Jednog dana se nagnula nad mojom ćerkom,

took her tiny shoulders,

uhvatila je za njena mala ramena,

jostled her and said, "Wake up! Wake up!"

prodrmala je i rekla: „Probudi se! Probudi se!“

We had a few therapists visit our house that first year,

Nekoliko terapeuta je posećivalo našu kuću te prve godine

and they usually focused on what they thought was bad about my kid.

i obično su se fokusirali na ono što su mislili da je loše kod mog deteta.

I was really happy when Fiona started using her right hand

Bila sam baš srećna kada je Fiona počela da koristi desnu ruku

to bully a dangling stuffed sheep,

da udara viseću plišanu ovcu,

but the therapist was fixated on my child's left hand.

ali se terapeut fiksirao na njenu levu ruku.

Fiona had a tendency not to use this hand very often,

Fiona je imala tendenciju da ne koristi tu ruku često,

and she would cross the fingers on that hand.

i prekrstila bi prste na toj ruci.

So the therapist said we should devise a splint,

Zato je terapeut rekao da treba da osmislimo neki uložak

which would rob my kid of the ability to actually use those fingers,

koji bi mom detetu oduzeo sposobnost da zapravo koristi te prste,

but it would at least force them into some position that looked normal.

ali bi ih makar naterao da zauzmu neki položaj koji izgleda normalno.

In that first year, I was starting to realize a few things.

Te prve godine počela sam da shvatam nekoliko stvari.

One: ancient parables aside, my kid had some bad therapists.

Prvo: stare parabole na stranu, moje dete je imalo loše terapeute.

(Laughter)

(Smeh)

Two: I had a choice.

Drugo: imala sam izbor.

Like a person offered to swallow a red pill or a blue pill,

Kao osoba kojoj je ponuđeno da proguta crvenu ili plavu pilulu,

I could choose to see my daughter's differences as bad;

mogla sam da odaberem da vidim različitosti svoje ćerke kao loše;

I could strive toward the goal that her therapists called,

mogla sam da težim cilju koji su njeni terapeuti zvali

"You'd never know."

„ko bi rekao“.

They loved to pat themselves on the back when they could say about a kid,

Voleli su da čestitaju sebi kada bi mogli da kažu za dete:

"You'd never know he was 'delayed' or 'autistic' or 'different.'"

„Ko bi rekao da je 'usporeno', 'autistično' ili 'drugačije'.“

I could believe that the good path was the path that erased

Mogla sam da verujem da je dobra staza ona koja briše

as many differences as possible.

što je moguće više razlika.

Of course, this would have been a disastrous pursuit,

Naravno, to bi bila katastrofalna putanja,

because at the cellular level, my daughter had rare blueprints.

jer je, na ćelijskom nivou, moja ćerka imala redak nacrt.

She wasn't designed to be like other people.

Nije bila programirana da bude kao drugi ljudi.

She would lead a rare life.

Vodila bi neobičan život.

So, I had another choice: I could drop my story

Imala sam zato drugi izbor.

Mogla sam da odustanem od svoje priče da su neurološke razlike,

that neurological differences and developmental delays and disabilities

kašnjenje u razvoju i invaliditeti loši,

were bad,

which means I could also drop my story that a more able-bodied life was better.

što znači da bih takođe napustila priču da je život u sposobnijem telu bolji.

I could release my cultural biases about what made a life good or bad

Mogla sam da odustanem od svojih kulturnih predrasuda

o tome šta život čini dobrim ili lošim

and simply watch my daughter's life as it unfolded

i jednostavno posmatram dok se život moje ćerke odvija

with openness and curiosity.

uz otvorenost i radoznalost.

One afternoon she was lying on her back,

Jednog popodneva je ležala na leđima

and she arched her back on the carpet

i povila je leđa na tepihu,

stuck her tongue out of the side of her mouth

izbacila jezik na stranu usta

and managed to torque her body onto her belly.

i uspela da izvije telo na stomak.

Then she tipped over and rolled back onto her back,

Zatim se preturila i prevrnula se na leđa

and once there, she managed to do it all over again,

i još jednom je uspela da sve to ponovi,

rolling and wiggling her 12-pound self under a coffee table.

prevrćući i koprcajući se ispod stočića sa svojih 5,5 kila.

At first, I thought she'd gotten stuck there,

Najpre sam pomislila da se zaglavila tu,

but then I saw her reaching for something that her eye had been on all along:

ali zatim sam videla kako poseže za nečim u šta je sve vreme gledala:

a black electric cord.

za crnim električnim kablom.

She was a year old.

Imala je godinu dana.

Other babies her age were for sure pulling up to stand and toddling around,

Svakako da su se druge bebe njenog uzrasta uspravljale da stoje i gegale unaokolo,

some of them.

neke od njih.

To some, my kid's situation looked bad:

Za neke je situacija sa mojim detetom izgledala loše -

a one-year-old who could only roll.

jednogodišnjakinja koja može samo da se prevrće.

But screw that.

Ali koga briga za to.

My kid was enjoying the new, limber freedom of mobility.

Moje dete je uživalo u novoj, gipkoj slobodi pokretljivosti.

I rejoiced.

Radovala sam se.

Then again, what I watched that afternoon was a baby yanking on an electric cord,

Pa ipak, tog popodneva sam posmatrala kako beba vuče električni kabl,

so you know,

tako da, znate,

good or bad, hard to say.

dobro ili loše, teško je reći.

(Laughter)

(Smeh)

I started seeing that when I released my grip

Počela sam da uviđam da, kada sam prestala da se grčevito držim

about what made a life good or bad,

za ono što život čini dobrim ili lošim,

I could watch my daughter's life unfold and see what it was.

mogla sam da posmatram život svoje ćerke kako se odvija i da vidim kakav on jeste.

It was beautiful,

Bio je prelep,

it was complicated,

bio je složen,

joyful, hard --

radostan, težak.

in other words: just another expression of the human experience.

Drugim rečima, samo još jedan izraz ljudskog iskustva.

Eventually, my family and I moved to a new state in America,

Na kraju smo se moja porodica i ja preselili u novu američku državu

and we got lucky with a brand-new batch of therapists.

i posrećilo nam se sa novom grupom terapeuta.

They didn't focus on all that was wrong with my kid.

Oni se nisu fokusirali na sve ono što ne valja kod mog deteta.

They didn't see her differences as problems to fix.

Nisu videli njene razlike kao probleme koje treba popraviti.

They acknowledged her limitations,

Prepoznali su njena ograničenja,

but they also saw her strengths,

ali su takođe videli njene snage

and they celebrated her for who she was.

i veličali su je zbog onoga što jeste.

Their goal wasn't to make Fiona as normal as possible;

Njihov cilj nije bio da što više unormale Fionu;

their goal was simply to help her be as independent as possible

cilj im je bio da joj jednostavno pomognu da bude što je moguće više nezavisna

so that she could fulfill her potential, however that looked for her.

tako da ostvari svoj potencijal, kako god to kod nje izgledalo.

But the culture at large does not take this open attitude about disabilities.

Ali, uopšte gledano, kultura ne zauzima ovaj otvoreni stav o invalidnosti.

We call congenital differences "birth defects,"

Nazivamo kongenitalne razlike „urođenim manama“,

as though human beings were objects on a factory line.

kao da su ljudska bića predmeti na fabričkoj traci.

We might offer pitying expressions

Možda ćemo izraziti saosećanje

when we learn that a colleague had a baby with Down syndrome.

kada saznamo da je koleginica dobila bebu sa Daunovim sindromom.

We hail a blockbuster film about a suicidal wheelchair user,

Hvalimo popularni film o suicidnom korisniku invalidskih kolica,

despite the fact that actual wheelchair users tell us

uprkos činjenici da nam ljudi koji zaista koriste invalidska kolica

that stereotype is unfair and damaging.

poručuju da je ovaj stereotip nepravedan i štetan.

And sometimes our medical institutions decide what lives are not worth living.

Ponekad naše medicinske ustanove odlučuju koje živote ne vredi živeti.

Such is the case with Amelia Rivera,

Takav je slučaj sa Amelijom Riverom,

a girl with my daughter's same syndrome.

devojčicom sa istim sindromom koji ima moja ćerka.

In 2012, a famous American children's hospital

Godine 2012, poznata američka bolnica za decu

initially denied Amelia the right to a lifesaving kidney transplant

prvobitno je Ameliji uskratila pravo na spasonosnu transplantaciju bubrega

because, according to their form,

jer je ona, prema njihovom obrascu,

as it said, she was "mentally retarded."

kako je navedeno, „mentalno retardirana“.

This is the way that the story of disabilities as bad manifests

Na ovaj način se priča o invalidnostima kao o lošim

manifestuje u kulturi.

in a culture.

But there's a surprisingly insidious counterstory --

Ali, postoji iznenađujući prikriveni kontrast -

the story, especially, that people with intellectual disabilities are good

priča o tome kako su, pogotovo, ljudi sa intelektualnom ometenošću dobri

because they are here to teach us something magical,

jer su ovde da bi nas naučili nečemu čarobnom

or they are inherently angelic and always sweet.

ili da su sami po sebi anđeli i uvek ljupki.

You have heard this ableist trope before:

Čuli ste već ovaj disabilistički trop:

the boy with Down syndrome who's one of God's special children,

dečak sa Daunovim sindromom koji je jedno od božje posebne dece

or the girl with the walker and the communication device

ili devojčica sa šetalicom i komunikacionim uređajem

koja je dragoceni mali anđeo.

who is a precious little angel.

This story rears its head in my daughter's life

Ova priča je pomolila glavu u životu moje ćerke

around Christmastime,

u vreme Božića,

kada izvesne ljude uhvati pozitivno raspoloženje

when certain people get positively giddy

at the thought of seeing her in angel's wings and a halo

na pomisao da je vide sa krilima anđela i oreolom

at the pageant.

na maskenbalu.

The insinuation is that these people don't experience the sticky complexities

Stiče se utisak da ovi ljudi ne proživljavaju nezgodne složenosti

of being human.

ljudskog postojanja.

And although at times, especially as a baby,

Iako je povremeno, pogotovo kao beba,

my daughter has, in fact, looked angelic,

moja ćerka zaista izgledala kao anđeo,

she has grown into the type of kid

izrasla je u takvo dete

who does the rascally things that any other kid does,

koje radi nevaljale stvari kao i bilo koje dete,

such as when she, at age four, shoved her two-year-old sister.

kao kada je, sa četiri godine, gurnula svoju dvogodišnju sestru.

My girl deserves the right to annoy the hell out of you,

Moja devojčica zaslužuje pravo da vas nervira do bola,

like any other kid.

kao i svako drugo dete.

When we label a person tragic or angelic,

Kada etiketiramo osobu kao tragičnu ili anđeosku,

bad or good,

lošu ili dobru,

we rob them of their humanity,

oduzimamo joj ljudskost,

along with not only the messiness and complexity that that title brings,

a uz to ne samo i haotičnost i složenost koju ta titula nosi,

but the rights and dignities as well.

već i prava i dostojanstvo.

My girl does not exist to teach me things

Moja devojčica ne postoji

da bi mene ili bilo koga drugog podučila nečemu,

or any of us things,

but she has indeed taught me:

ali me je zaista naučila:

number one, how many mozzarella cheese sticks

kao prvo, koliko štapića od mocarele

a 22-pound human being can consume in one day --

ljudsko biće od 10 kilograma može da pojede u jednom danu -

which is five, for the record;

pet, da se zna;

and two, the gift of questioning my culture's beliefs

i kao drugo, daru preispitivanja mojih kulturoloških uverenja

about what makes a life good

o tome šta život čini dobrim,

and what makes life bad.

a šta ga čini lošim.

If you had told me six years ago

Da ste mi rekli pre šest godina

that my daughter would sometimes use and iPad app to communicate,

da će moja ćerka ponekad koristiti aplikaciju na Ajpedu da komunicira,

I might have thought that was sad.

možda bih pomislila da je to tužno.

But now I recall the first day I handed Fiona her iPad,

Ali sada se sećam prvog dana kada sam Fioni dala njen Ajped,

loaded with a thousand words,

pun hiljadu reči,

each represented by a tiny little icon or little square on her iPad app.

od kojih je svaka predstavljena ikonicom ili kvadratićem na njenoj aplikaciji.

And I recall how bold and hopeful it felt,

Sećam se kakav je to bio osećaj odvažnosti i nade,

even as some of her therapists said that my expectations were way too high,

iako su neki njeni terapeuti govorili da su moja očekivanja previsoka,

that she would never be able to hit those tiny targets.

da ona nikada neće moći da pogodi te sićušne mete.

And I recall watching in awe as she gradually learned

Sećam se kako sam je posmatrala sa oduševljenjem dok je postepeno učila

to flex her little thumb

da savije svoj maleni palac

and hit the buttons to say words she loved,

i pritisne dugmad da bi rekla reči koje voli,

like "reggae" and "cheese"

kao što su „rege“, „sir“

and a hundred other words she loved that her mouth couldn't yet say.

i stotinu drugih reči koje voli, a koje njena usta još ne mogu da izgovore.

And then we had to teach her less-fun words, prepositions --

Zatim smo morali da je naučimo manje zabavnim rečima, predlozima,

words like "of" and "on" and "in."

rečima kao što su „od“, „na“ i „u“.

And we worked on this for a few weeks.

Radili smo na tome nekoliko nedelja.

And then I recall sitting at a dining room table

Zatim, sećam se da smo sedeli za trpezarijskim stolom

with many relatives,

sa mnogo rođaka,

and, apropos of absolutely nothing,

i onako sasvim uzgred,

Fiona used her iPad app to say,

Fiona je upotrebila aplikaciju na Ajpedu da kaže:

"poop in toilet."

„kaka u šolji“.

(Laughter)

(Smeh)

Good or bad, hard to say.

Dobro ili loše, teško je reći.

(Laughter)

(Smeh)

My kid is human, that's all.

Moje dete je ljudsko biće, to je sve.

And that is a lot.

A to je velika stvar.

Thank you.

Hvala.

(Applause)

(Aplauz)