TED@BCG Milan
Heather Lanier: "Good" and "bad" are incomplete stories we tell ourselves
Heder Lanije (Heather Lanier): „Dobro“ i „loše“ su nepotpune priče koje pričamo sebi
Filmed:
Readability: 4
2,298,877 views
Ćerka Heder Lanije, Fiona, ima Volf-Hiršhornov sindrom, genetsko oboljenje koje dovodi do kašnjenja u razvoju, ali to je ne čini tragičnom, anđeoskom niti bilo kojim drugim stereotipom o deci kao što je ona. U ovom govoru o prelepom, složenom, radosnom i teškom putovanju podizanja neobične devojčice, Lanijeova preispituje naše pretpostavke o tome šta život čini „dobrim“ ili „lošim“, izazivajući nas da prestanemo da se fiksiramo na rešenja za sve ono što ne smatramo normalnim, i umesto toga prihvatimo život onakvim kako se odvija.
Heather Lanier - Essayist, poet
Heather Lanier illuminates truths about the human condition that speak to both the head and the heart. Full bio
Heather Lanier illuminates truths about the human condition that speak to both the head and the heart. Full bio
Double-click the English transcript below to play the video.
Postoji stara parabola
o seljaku koji je izgubio konja.
o seljaku koji je izgubio konja.
00:12
There's an ancient parable
about a farmer who lost his horse.
about a farmer who lost his horse.
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00:17
And neighbors came over to say,
"Oh, that's too bad."
"Oh, that's too bad."
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Komšije su došle da kažu: „O, baš loše.“
00:20
And the farmer said,
"Good or bad, hard to say."
"Good or bad, hard to say."
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A seljak je rekao:
„Dobro ili loše, teško je reći.“
„Dobro ili loše, teško je reći.“
00:24
Days later, the horse returns
and brings with it seven wild horses.
and brings with it seven wild horses.
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Danima kasnije, konj se vratio
i sa sobom doveo sedam divljih konja.
i sa sobom doveo sedam divljih konja.
00:30
And neighbors come over to say,
"Oh, that's so good!"
"Oh, that's so good!"
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Komšije su došle da kažu:
„O, to je baš dobro!“
„O, to je baš dobro!“
00:33
And the farmer just shrugs
and says, "Good or bad, hard to say."
and says, "Good or bad, hard to say."
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A seljak samo slegne ramenima
i kaže: „Dobro ili loše, teško je reći.“
i kaže: „Dobro ili loše, teško je reći.“
00:39
The next day, the farmer's son
rides one of the wild horses,
rides one of the wild horses,
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Sledećeg dana, sin seljaka
ode da jaše jednog divljeg konja,
ode da jaše jednog divljeg konja,
00:43
is thrown off and breaks his leg.
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bude zbačen sa sedla i polomi nogu.
00:46
And the neighbors say,
"Oh, that's terrible luck."
"Oh, that's terrible luck."
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Komšije kažu: „O, baš loša sreća.“
00:49
And the farmer says,
"Good or bad, hard to say."
"Good or bad, hard to say."
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A seljak kaže: „Dobro ili loše,
teško je reći.“
teško je reći.“
00:54
Eventually, officers come
knocking on people's doors,
knocking on people's doors,
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Na kraju dođu oficiri
da kucaju ljudima na vrata,
da kucaju ljudima na vrata,
00:57
looking for men to draft for an army,
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tražeći muškarce
da ih regrutuju za vojsku,
da ih regrutuju za vojsku,
00:59
and they see the farmer's son and his leg
and they pass him by.
and they pass him by.
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vide seljakovog sina
i njegovu nogu i zaobiđu ga.
i njegovu nogu i zaobiđu ga.
01:03
And neighbors say,
"Ooh, that's great luck!"
"Ooh, that's great luck!"
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Komšije kažu: „O, baš velika sreća!“
01:06
And the farmer says,
"Good or bad, hard to say."
"Good or bad, hard to say."
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A seljak kaže: „Dobro ili loše,
teško je reći.“
teško je reći.“
01:11
I first heard this story 20 years ago,
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Prvi put sam čula tu priču pre 20 godina
01:13
and I have since applied it 100 times.
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i od tada sam je primenila 100 puta.
01:16
Didn't get the job I wanted:
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Nisam dobila posao koji sam htela:
01:18
good or bad, hard to say.
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dobro ili loše, teško je reći.
01:20
Got the job I wanted:
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Dobila sam posao koji sam htela;
01:23
good or bad, hard to say.
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dobro ili loše, teško je reći.
01:25
To me, the story is not about
looking on the bright side
looking on the bright side
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Za mene, u ovoj priči se ne radi
o gledanju sa vedrije strane
o gledanju sa vedrije strane
01:29
or waiting to see how things turn out.
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niti čekanju da bi se videlo
kako će nešto ispasti.
kako će nešto ispasti.
01:32
It's about how eager we can be
to label a situation,
to label a situation,
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Radi se o tome koliko možemo imati potrebu
da prilepimo etiketu situaciji,
da prilepimo etiketu situaciji,
01:35
to put concrete around it by judging it.
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da je zatvorimo u čvrste okvire
prosuđujući o njoj.
prosuđujući o njoj.
01:38
But reality is much more fluid,
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Ali stvarnost je mnogo promenljivija,
01:41
and good and bad are often
incomplete stories that we tell ourselves.
incomplete stories that we tell ourselves.
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a dobro i loše su često nepotpune priče
koje pričamo samima sebi.
koje pričamo samima sebi.
01:46
The parable has been my warning
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Ova parabola je bila moje upozorenje
01:49
that by gripping tightly
to the story of good or bad,
to the story of good or bad,
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na to da, čvrsto se držeći priče
o dobrom i lošem,
o dobrom i lošem,
gušim svoju sposobnost
da istinski sagledam situaciju.
da istinski sagledam situaciju.
01:52
I close down my ability
to truly see a situation.
to truly see a situation.
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01:56
I learn more when I proceed
and loosen my grip
and loosen my grip
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Više naučim kada krenem, popustim stisak
02:00
and proceed openly
with curiosity and wonder.
with curiosity and wonder.
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i otvoreno nastavim
uz radoznalost i čuđenje.
uz radoznalost i čuđenje.
02:04
But seven years ago,
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Ali pre sedam godina,
kada sam bila trudna
sa svojim prvim detetom,
sa svojim prvim detetom,
02:07
when I was pregnant with my first child,
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sasvim sam zaboravila ovu lekciju.
02:09
I completely forgot this lesson.
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02:12
I believed I knew
wholeheartedly what was good.
wholeheartedly what was good.
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Iskreno sam verovala da znam šta je dobro.
02:15
When it came to having kids,
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Kada se radilo o rađanju dece,
02:17
I thought that good
was some version of a superbaby,
was some version of a superbaby,
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mislila sam da je dobro
neka verzija superbebe,
neka verzija superbebe,
nekog ultrazdravog ljudskog bića
koje nema ni jednu jedinu manu
koje nema ni jednu jedinu manu
02:20
some ultrahealthy human
who possessed not a single flaw
who possessed not a single flaw
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02:24
and would practically wear a cape
flying into her superhero future.
flying into her superhero future.
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i koje bi praktično nosilo plašt
koji bi ga odneo u budućnost superheroja.
koji bi ga odneo u budućnost superheroja.
02:29
I took DHA pills to ensure that my baby
had a super-high-functioning,
had a super-high-functioning,
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Uzimala sam pilule sa DHK
da bih se osigurala da moja beba
da bih se osigurala da moja beba
ima mozak koji super funkcioniše,
koji je izuzetno pametan,
koji je izuzetno pametan,
02:34
supersmart brain,
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02:35
and I ate mostly organic food,
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jela sam uglavnom organsku hranu,
02:38
and I trained for a medication-free labor,
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vežbala sam za porođaj bez lekova
02:41
and I did many other things
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i radila sam mnogo drugih stvari
02:42
because I thought these things
would help me make not just a good baby,
would help me make not just a good baby,
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jer sam mislila da će mi pomoći
ne samo da stvorim dobru bebu,
ne samo da stvorim dobru bebu,
02:47
but the best baby possible.
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već najbolju moguću bebu.
02:50
When my daughter Fiona was born,
she weighed 4 pounds, 12 ounces,
she weighed 4 pounds, 12 ounces,
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Kada se moja ćerka Fiona rodila,
imala je četiri funte i 12 unci
imala je četiri funte i 12 unci
02:55
or 2.15 kilograms.
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ili 2,15 kilograma.
02:58
The pediatrician said there were only
two possible explanations
two possible explanations
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Pedijatar je rekao da postoje
samo dva moguća objašnjenja
samo dva moguća objašnjenja
za to što je tako malena.
03:02
for her tiny size.
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03:04
"Either," he said, "it's bad seed,"
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„Ili je loše seme“, rekao je,
03:07
"or it's bad soil."
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„ili je loše zemljište.“
03:09
And I wasn't so tired from labor
to lose the thread of his logic:
to lose the thread of his logic:
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Nisam bila toliko umorna od porođaja
da bih izgubila nit njegove logike:
da bih izgubila nit njegove logike:
03:14
my newborn, according to the doctor,
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moje novorođenče je, prema doktoru,
03:16
was a bad plant.
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bilo loša biljka.
03:19
Eventually, I learned that my daughter
had an ultra-rare chromosomal condition
had an ultra-rare chromosomal condition
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Na kraju sam saznala da moja ćerka ima
izuzetno retko stanje hromozoma
izuzetno retko stanje hromozoma
03:24
called Wolf-Hirschhorn syndrome.
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zvano Volf-Hiršhornov sindrom.
03:26
She was missing a chunk
of her fourth chromosome.
of her fourth chromosome.
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Nedostajao joj je deo četvrtog hromozoma.
03:29
And although my daughter was good --
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I mada je moja ćerka bila dobro -
03:33
she was alive,
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bila je živa,
03:34
and she had brand new baby skin
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imala je novu bebastu kožu
03:36
and the most aware onyx eyes --
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i vrlo svesne oči poput oniksa -
takođe sam saznala
da ljudi sa njenim sindromom
da ljudi sa njenim sindromom
03:39
I also learned that people
with her syndrome
with her syndrome
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03:42
have significant developmental
delays and disabilities.
delays and disabilities.
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značajno zaostaju u razvoju
i imaju invaliditete.
i imaju invaliditete.
03:45
Some never learn to walk or talk.
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Neki nikada ne nauče da hodaju ili govore.
03:48
I did not have the equanimity
of the farmer.
of the farmer.
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Nisam imala staloženost seljaka.
03:52
The situation looked
unequivocally bad to me.
unequivocally bad to me.
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Situacija mi je izgledala
nedvosmisleno loše.
nedvosmisleno loše.
03:56
But here's where the parable is so useful,
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Ali, evo gde je parabola korisna,
03:59
because for weeks after her diagnosis,
I felt gripped by despair,
I felt gripped by despair,
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jer sam nedeljama nakon dijagnoze
bila obuzeta očajem,
bila obuzeta očajem,
04:04
locked in the story
that all of this was tragic.
that all of this was tragic.
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zaglavljena u priči
u kojoj je sve bilo tragično.
u kojoj je sve bilo tragično.
04:08
Reality, though -- thankfully --
is much more fluid,
is much more fluid,
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Stvarnost je, doduše - srećom -
mnogo promenljivija
mnogo promenljivija
04:12
and it has much more to teach.
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i ima mnogo čemu još da nauči.
04:15
As I started to get to know
this mysterious person who was my kid,
this mysterious person who was my kid,
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Kada sam počela da upoznajem
tu misterioznu osobu od mog deteta,
tu misterioznu osobu od mog deteta,
04:20
my fixed, tight story of tragedy loosened.
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popustila je moja fiksirana,
kruta priča o tragediji.
kruta priča o tragediji.
04:24
It turned out my girl loved reggae,
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Ispostavilo se
da moja devojčica voli rege
da moja devojčica voli rege
04:26
and she would smirk when my husband
would bounce her tiny body up and down
would bounce her tiny body up and down
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i kezila se kada bi moj muž bacakao
njeno sićušno telo gore-dole u ritmu.
njeno sićušno telo gore-dole u ritmu.
04:30
to the rhythm.
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Njene oči noje oniksa
su na kraju poprimile
su na kraju poprimile
04:31
Her onyx eyes eventually turned
the most stunning Lake Tahoe blue,
the most stunning Lake Tahoe blue,
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najdivniju plavu boju poput jezera Taho,
04:36
and she loved using them to gaze intently
into other people's eyes.
into other people's eyes.
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i volela je da njima intenzivno zuri
drugim ljudima u oči.
drugim ljudima u oči.
04:41
At five months old, she could not
hold her head up like other babies,
hold her head up like other babies,
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Na uzrastu od pet meseci, nije umela
da drži glavu uspravno kao druge bebe,
da drži glavu uspravno kao druge bebe,
04:45
but she could hold this deep,
intent eye contact.
intent eye contact.
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ali mogla je da održava dubok,
intenzivan kontakt očima.
intenzivan kontakt očima.
04:48
One friend said, "She's the most
aware baby I've ever seen."
aware baby I've ever seen."
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Jedan prijatelj mi je rekao: „Ona je
najsvesnija beba koju sam ikad video.“
najsvesnija beba koju sam ikad video.“
04:53
But where I saw the gift
of her calm, attentive presence,
of her calm, attentive presence,
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Ali tu gde sam ja videla dar
njenog mirnog, pažljivog prisustva,
njenog mirnog, pažljivog prisustva,
04:57
an occupational therapist who came
over to our house to work with Fiona
over to our house to work with Fiona
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okupaciona terapeutkinja koja je došla
da radi u našoj kući sa Fionom
da radi u našoj kući sa Fionom
videla je dete
koje je bilo neurološki tupo.
koje je bilo neurološki tupo.
05:01
saw a child who was neurologically dull.
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05:04
This therapist was especially disappointed
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Ova terapeutkinja
je naročito bila razočarana
je naročito bila razočarana
05:07
that Fiona wasn't rolling over yet,
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jer se Fiona još nije prevrtala,
05:10
and so she told me we needed
to wake her neurology up.
to wake her neurology up.
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pa mi je rekla da moramo
da probudimo njenu neurologiju.
da probudimo njenu neurologiju.
05:13
One day she leaned over
my daughter's body,
my daughter's body,
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Jednog dana se nagnula nad mojom ćerkom,
uhvatila je za njena mala ramena,
05:16
took her tiny shoulders,
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05:18
jostled her and said, "Wake up! Wake up!"
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prodrmala je i rekla:
„Probudi se! Probudi se!“
„Probudi se! Probudi se!“
05:21
We had a few therapists
visit our house that first year,
visit our house that first year,
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Nekoliko terapeuta je posećivalo
našu kuću te prve godine
našu kuću te prve godine
i obično su se fokusirali na ono
što su mislili da je loše kod mog deteta.
što su mislili da je loše kod mog deteta.
05:24
and they usually focused on what
they thought was bad about my kid.
they thought was bad about my kid.
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05:28
I was really happy when
Fiona started using her right hand
Fiona started using her right hand
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Bila sam baš srećna kada je Fiona
počela da koristi desnu ruku
počela da koristi desnu ruku
05:31
to bully a dangling stuffed sheep,
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da udara viseću plišanu ovcu,
05:34
but the therapist was fixated
on my child's left hand.
on my child's left hand.
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ali se terapeut fiksirao
na njenu levu ruku.
na njenu levu ruku.
05:38
Fiona had a tendency
not to use this hand very often,
not to use this hand very often,
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Fiona je imala tendenciju
da ne koristi tu ruku često,
da ne koristi tu ruku često,
05:41
and she would cross
the fingers on that hand.
the fingers on that hand.
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i prekrstila bi prste na toj ruci.
05:44
So the therapist said
we should devise a splint,
we should devise a splint,
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Zato je terapeut rekao
da treba da osmislimo neki uložak
da treba da osmislimo neki uložak
05:46
which would rob my kid of the ability
to actually use those fingers,
to actually use those fingers,
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koji bi mom detetu oduzeo sposobnost
da zapravo koristi te prste,
da zapravo koristi te prste,
05:51
but it would at least force them
into some position that looked normal.
into some position that looked normal.
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ali bi ih makar naterao da zauzmu
neki položaj koji izgleda normalno.
neki položaj koji izgleda normalno.
05:55
In that first year, I was starting
to realize a few things.
to realize a few things.
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Te prve godine počela sam
da shvatam nekoliko stvari.
da shvatam nekoliko stvari.
Prvo: stare parabole na stranu,
moje dete je imalo loše terapeute.
moje dete je imalo loše terapeute.
05:58
One: ancient parables aside,
my kid had some bad therapists.
my kid had some bad therapists.
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(Smeh)
06:02
(Laughter)
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Drugo: imala sam izbor.
06:03
Two: I had a choice.
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Kao osoba kojoj je ponuđeno
da proguta crvenu ili plavu pilulu,
da proguta crvenu ili plavu pilulu,
06:05
Like a person offered to swallow
a red pill or a blue pill,
a red pill or a blue pill,
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mogla sam da odaberem da vidim
različitosti svoje ćerke kao loše;
različitosti svoje ćerke kao loše;
06:09
I could choose to see
my daughter's differences as bad;
my daughter's differences as bad;
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06:12
I could strive toward the goal
that her therapists called,
that her therapists called,
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mogla sam da težim cilju
koji su njeni terapeuti zvali
koji su njeni terapeuti zvali
06:16
"You'd never know."
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„ko bi rekao“.
06:17
They loved to pat themselves on the back
when they could say about a kid,
when they could say about a kid,
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Voleli su da čestitaju sebi
kada bi mogli da kažu za dete:
kada bi mogli da kažu za dete:
„Ko bi rekao da je 'usporeno',
'autistično' ili 'drugačije'.“
'autistično' ili 'drugačije'.“
06:20
"You'd never know he was 'delayed'
or 'autistic' or 'different.'"
or 'autistic' or 'different.'"
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06:25
I could believe that the good path
was the path that erased
was the path that erased
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Mogla sam da verujem
da je dobra staza ona koja briše
da je dobra staza ona koja briše
što je moguće više razlika.
06:29
as many differences as possible.
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06:32
Of course, this would have been
a disastrous pursuit,
a disastrous pursuit,
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Naravno, to bi bila katastrofalna putanja,
jer je, na ćelijskom nivou,
moja ćerka imala redak nacrt.
moja ćerka imala redak nacrt.
06:35
because at the cellular level,
my daughter had rare blueprints.
my daughter had rare blueprints.
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Nije bila programirana
da bude kao drugi ljudi.
da bude kao drugi ljudi.
06:39
She wasn't designed
to be like other people.
to be like other people.
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06:42
She would lead a rare life.
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Vodila bi neobičan život.
06:44
So, I had another choice:
I could drop my story
I could drop my story
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Imala sam zato drugi izbor.
Mogla sam da odustanem od svoje priče
da su neurološke razlike,
da su neurološke razlike,
06:48
that neurological differences
and developmental delays and disabilities
and developmental delays and disabilities
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kašnjenje u razvoju i invaliditeti loši,
06:53
were bad,
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što znači da bih takođe napustila priču
da je život u sposobnijem telu bolji.
da je život u sposobnijem telu bolji.
06:54
which means I could also drop my story
that a more able-bodied life was better.
that a more able-bodied life was better.
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07:00
I could release my cultural biases
about what made a life good or bad
about what made a life good or bad
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Mogla sam da odustanem
od svojih kulturnih predrasuda
od svojih kulturnih predrasuda
o tome šta život čini dobrim ili lošim
07:05
and simply watch
my daughter's life as it unfolded
my daughter's life as it unfolded
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i jednostavno posmatram
dok se život moje ćerke odvija
dok se život moje ćerke odvija
07:09
with openness and curiosity.
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uz otvorenost i radoznalost.
07:12
One afternoon she was lying on her back,
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Jednog popodneva je ležala na leđima
07:14
and she arched her back on the carpet
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i povila je leđa na tepihu,
07:17
stuck her tongue
out of the side of her mouth
out of the side of her mouth
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izbacila jezik na stranu usta
07:20
and managed to torque
her body onto her belly.
her body onto her belly.
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i uspela da izvije telo na stomak.
07:24
Then she tipped over
and rolled back onto her back,
and rolled back onto her back,
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Zatim se preturila i prevrnula se na leđa
07:27
and once there, she managed
to do it all over again,
to do it all over again,
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i još jednom je uspela da sve to ponovi,
07:30
rolling and wiggling her 12-pound self
under a coffee table.
under a coffee table.
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prevrćući i koprcajući se
ispod stočića sa svojih 5,5 kila.
ispod stočića sa svojih 5,5 kila.
07:34
At first, I thought
she'd gotten stuck there,
she'd gotten stuck there,
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Najpre sam pomislila da se zaglavila tu,
07:37
but then I saw her reaching for something
that her eye had been on all along:
that her eye had been on all along:
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ali zatim sam videla kako poseže za nečim
u šta je sve vreme gledala:
u šta je sve vreme gledala:
za crnim električnim kablom.
07:42
a black electric cord.
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07:44
She was a year old.
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Imala je godinu dana.
07:46
Other babies her age were for sure
pulling up to stand and toddling around,
pulling up to stand and toddling around,
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Svakako da su se druge bebe njenog uzrasta
uspravljale da stoje i gegale unaokolo,
uspravljale da stoje i gegale unaokolo,
neke od njih.
07:51
some of them.
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Za neke je situacija
sa mojim detetom izgledala loše -
sa mojim detetom izgledala loše -
07:53
To some, my kid's situation looked bad:
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jednogodišnjakinja koja može
samo da se prevrće.
samo da se prevrće.
07:57
a one-year-old who could only roll.
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07:59
But screw that.
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Ali koga briga za to.
08:00
My kid was enjoying the new,
limber freedom of mobility.
limber freedom of mobility.
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Moje dete je uživalo u novoj,
gipkoj slobodi pokretljivosti.
gipkoj slobodi pokretljivosti.
08:05
I rejoiced.
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Radovala sam se.
08:07
Then again, what I watched that afternoon
was a baby yanking on an electric cord,
was a baby yanking on an electric cord,
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Pa ipak, tog popodneva sam posmatrala
kako beba vuče električni kabl,
kako beba vuče električni kabl,
08:11
so you know,
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tako da, znate,
08:13
good or bad, hard to say.
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dobro ili loše, teško je reći.
08:14
(Laughter)
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(Smeh)
08:16
I started seeing
that when I released my grip
that when I released my grip
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Počela sam da uviđam da,
kada sam prestala da se grčevito držim
kada sam prestala da se grčevito držim
08:20
about what made a life good or bad,
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za ono što život čini dobrim ili lošim,
mogla sam da posmatram život svoje ćerke
kako se odvija i da vidim kakav on jeste.
kako se odvija i da vidim kakav on jeste.
08:22
I could watch my daughter's life unfold
and see what it was.
and see what it was.
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08:27
It was beautiful,
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Bio je prelep,
08:28
it was complicated,
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bio je složen,
08:31
joyful, hard --
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radostan, težak.
08:33
in other words: just another expression
of the human experience.
of the human experience.
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Drugim rečima, samo još jedan izraz
ljudskog iskustva.
ljudskog iskustva.
08:40
Eventually, my family and I moved
to a new state in America,
to a new state in America,
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Na kraju smo se moja porodica i ja
preselili u novu američku državu
preselili u novu američku državu
i posrećilo nam se
sa novom grupom terapeuta.
sa novom grupom terapeuta.
08:43
and we got lucky with a brand-new
batch of therapists.
batch of therapists.
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Oni se nisu fokusirali
na sve ono što ne valja kod mog deteta.
na sve ono što ne valja kod mog deteta.
08:47
They didn't focus on
all that was wrong with my kid.
all that was wrong with my kid.
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08:51
They didn't see her differences
as problems to fix.
as problems to fix.
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Nisu videli njene razlike
kao probleme koje treba popraviti.
kao probleme koje treba popraviti.
08:54
They acknowledged her limitations,
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Prepoznali su njena ograničenja,
08:56
but they also saw her strengths,
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ali su takođe videli njene snage
08:59
and they celebrated her for who she was.
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i veličali su je zbog onoga što jeste.
09:02
Their goal wasn't to make Fiona
as normal as possible;
as normal as possible;
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Njihov cilj nije bio
da što više unormale Fionu;
da što više unormale Fionu;
cilj im je bio da joj jednostavno pomognu
da bude što je moguće više nezavisna
da bude što je moguće više nezavisna
09:06
their goal was simply to help her
be as independent as possible
be as independent as possible
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09:10
so that she could fulfill her potential,
however that looked for her.
however that looked for her.
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tako da ostvari svoj potencijal,
kako god to kod nje izgledalo.
kako god to kod nje izgledalo.
09:14
But the culture at large does not take
this open attitude about disabilities.
this open attitude about disabilities.
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Ali, uopšte gledano, kultura ne zauzima
ovaj otvoreni stav o invalidnosti.
ovaj otvoreni stav o invalidnosti.
09:20
We call congenital differences
"birth defects,"
"birth defects,"
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Nazivamo kongenitalne razlike
„urođenim manama“,
„urođenim manama“,
09:24
as though human beings
were objects on a factory line.
were objects on a factory line.
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kao da su ljudska bića
predmeti na fabričkoj traci.
predmeti na fabričkoj traci.
09:27
We might offer pitying expressions
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Možda ćemo izraziti saosećanje
09:30
when we learn that a colleague
had a baby with Down syndrome.
had a baby with Down syndrome.
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kada saznamo da je koleginica
dobila bebu sa Daunovim sindromom.
dobila bebu sa Daunovim sindromom.
09:33
We hail a blockbuster film
about a suicidal wheelchair user,
about a suicidal wheelchair user,
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Hvalimo popularni film
o suicidnom korisniku invalidskih kolica,
o suicidnom korisniku invalidskih kolica,
09:37
despite the fact that actual
wheelchair users tell us
wheelchair users tell us
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uprkos činjenici da nam ljudi
koji zaista koriste invalidska kolica
koji zaista koriste invalidska kolica
poručuju da je ovaj stereotip
nepravedan i štetan.
nepravedan i štetan.
09:40
that stereotype is unfair and damaging.
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09:44
And sometimes our medical institutions
decide what lives are not worth living.
decide what lives are not worth living.
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Ponekad naše medicinske ustanove
odlučuju koje živote ne vredi živeti.
odlučuju koje živote ne vredi živeti.
09:49
Such is the case with Amelia Rivera,
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Takav je slučaj sa Amelijom Riverom,
devojčicom sa istim sindromom
koji ima moja ćerka.
koji ima moja ćerka.
09:51
a girl with my daughter's same syndrome.
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09:54
In 2012, a famous American
children's hospital
children's hospital
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Godine 2012, poznata američka
bolnica za decu
bolnica za decu
09:58
initially denied Amelia the right
to a lifesaving kidney transplant
to a lifesaving kidney transplant
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prvobitno je Ameliji uskratila pravo
na spasonosnu transplantaciju bubrega
na spasonosnu transplantaciju bubrega
10:02
because, according to their form,
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jer je ona, prema njihovom obrascu,
10:04
as it said, she was "mentally retarded."
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kako je navedeno, „mentalno retardirana“.
10:07
This is the way that the story
of disabilities as bad manifests
of disabilities as bad manifests
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Na ovaj način se priča
o invalidnostima kao o lošim
o invalidnostima kao o lošim
manifestuje u kulturi.
10:11
in a culture.
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10:12
But there's a surprisingly
insidious counterstory --
insidious counterstory --
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Ali, postoji iznenađujući
prikriveni kontrast -
prikriveni kontrast -
10:16
the story, especially, that people
with intellectual disabilities are good
with intellectual disabilities are good
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priča o tome kako su, pogotovo,
ljudi sa intelektualnom ometenošću dobri
ljudi sa intelektualnom ometenošću dobri
10:21
because they are here
to teach us something magical,
to teach us something magical,
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jer su ovde da bi nas naučili
nečemu čarobnom
nečemu čarobnom
10:24
or they are inherently angelic
and always sweet.
and always sweet.
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ili da su sami po sebi
anđeli i uvek ljupki.
anđeli i uvek ljupki.
10:28
You have heard this ableist trope before:
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Čuli ste već ovaj disabilistički trop:
10:32
the boy with Down syndrome
who's one of God's special children,
who's one of God's special children,
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dečak sa Daunovim sindromom
koji je jedno od božje posebne dece
koji je jedno od božje posebne dece
10:36
or the girl with the walker
and the communication device
and the communication device
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ili devojčica sa šetalicom
i komunikacionim uređajem
i komunikacionim uređajem
koja je dragoceni mali anđeo.
10:40
who is a precious little angel.
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Ova priča je pomolila glavu
u životu moje ćerke
u životu moje ćerke
10:42
This story rears its head
in my daughter's life
in my daughter's life
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u vreme Božića,
10:44
around Christmastime,
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kada izvesne ljude
uhvati pozitivno raspoloženje
uhvati pozitivno raspoloženje
10:46
when certain people get positively giddy
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na pomisao da je vide
sa krilima anđela i oreolom
sa krilima anđela i oreolom
10:48
at the thought of seeing her
in angel's wings and a halo
in angel's wings and a halo
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10:51
at the pageant.
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na maskenbalu.
10:53
The insinuation is that these people
don't experience the sticky complexities
don't experience the sticky complexities
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Stiče se utisak da ovi ljudi
ne proživljavaju nezgodne složenosti
ne proživljavaju nezgodne složenosti
ljudskog postojanja.
10:58
of being human.
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Iako je povremeno, pogotovo kao beba,
11:00
And although at times,
especially as a baby,
especially as a baby,
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11:02
my daughter has, in fact, looked angelic,
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moja ćerka zaista izgledala kao anđeo,
11:06
she has grown into the type of kid
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izrasla je u takvo dete
11:08
who does the rascally things
that any other kid does,
that any other kid does,
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koje radi nevaljale stvari
kao i bilo koje dete,
kao i bilo koje dete,
11:11
such as when she, at age four,
shoved her two-year-old sister.
shoved her two-year-old sister.
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kao kada je, sa četiri godine,
gurnula svoju dvogodišnju sestru.
gurnula svoju dvogodišnju sestru.
11:17
My girl deserves the right
to annoy the hell out of you,
to annoy the hell out of you,
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Moja devojčica zaslužuje pravo
da vas nervira do bola,
da vas nervira do bola,
kao i svako drugo dete.
11:20
like any other kid.
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11:23
When we label a person tragic or angelic,
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Kada etiketiramo osobu
kao tragičnu ili anđeosku,
kao tragičnu ili anđeosku,
11:27
bad or good,
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lošu ili dobru,
11:29
we rob them of their humanity,
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oduzimamo joj ljudskost,
11:31
along with not only the messiness
and complexity that that title brings,
and complexity that that title brings,
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a uz to ne samo i haotičnost
i složenost koju ta titula nosi,
i složenost koju ta titula nosi,
11:36
but the rights and dignities as well.
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već i prava i dostojanstvo.
11:40
My girl does not exist to teach me things
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Moja devojčica ne postoji
da bi mene ili bilo koga drugog
podučila nečemu,
podučila nečemu,
11:42
or any of us things,
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11:44
but she has indeed taught me:
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ali me je zaista naučila:
11:46
number one, how many
mozzarella cheese sticks
mozzarella cheese sticks
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kao prvo, koliko štapića od mocarele
ljudsko biće od 10 kilograma
može da pojede u jednom danu -
može da pojede u jednom danu -
11:49
a 22-pound human being
can consume in one day --
can consume in one day --
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11:52
which is five, for the record;
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2549
pet, da se zna;
11:55
and two, the gift of questioning
my culture's beliefs
my culture's beliefs
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i kao drugo, daru preispitivanja
mojih kulturoloških uverenja
mojih kulturoloških uverenja
12:00
about what makes a life good
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o tome šta život čini dobrim,
12:02
and what makes life bad.
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a šta ga čini lošim.
12:04
If you had told me six years ago
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Da ste mi rekli pre šest godina
da će moja ćerka ponekad koristiti
aplikaciju na Ajpedu da komunicira,
aplikaciju na Ajpedu da komunicira,
12:07
that my daughter would sometimes use
and iPad app to communicate,
and iPad app to communicate,
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12:11
I might have thought that was sad.
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možda bih pomislila da je to tužno.
12:14
But now I recall the first day
I handed Fiona her iPad,
I handed Fiona her iPad,
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Ali sada se sećam prvog dana
kada sam Fioni dala njen Ajped,
kada sam Fioni dala njen Ajped,
pun hiljadu reči,
12:18
loaded with a thousand words,
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12:21
each represented by a tiny little icon
or little square on her iPad app.
or little square on her iPad app.
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od kojih je svaka predstavljena ikonicom
ili kvadratićem na njenoj aplikaciji.
ili kvadratićem na njenoj aplikaciji.
12:26
And I recall how bold and hopeful it felt,
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Sećam se kakav je to bio osećaj
odvažnosti i nade,
odvažnosti i nade,
12:29
even as some of her therapists said
that my expectations were way too high,
that my expectations were way too high,
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iako su neki njeni terapeuti govorili
da su moja očekivanja previsoka,
da su moja očekivanja previsoka,
12:34
that she would never be able
to hit those tiny targets.
to hit those tiny targets.
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da ona nikada neće moći
da pogodi te sićušne mete.
da pogodi te sićušne mete.
12:38
And I recall watching in awe
as she gradually learned
as she gradually learned
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Sećam se kako sam je posmatrala
sa oduševljenjem dok je postepeno učila
sa oduševljenjem dok je postepeno učila
da savije svoj maleni palac
12:42
to flex her little thumb
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12:44
and hit the buttons to say
words she loved,
words she loved,
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i pritisne dugmad
da bi rekla reči koje voli,
da bi rekla reči koje voli,
12:47
like "reggae" and "cheese"
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kao što su „rege“, „sir“
12:50
and a hundred other words she loved
that her mouth couldn't yet say.
that her mouth couldn't yet say.
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i stotinu drugih reči koje voli,
a koje njena usta još ne mogu da izgovore.
a koje njena usta još ne mogu da izgovore.
Zatim smo morali da je naučimo
manje zabavnim rečima, predlozima,
manje zabavnim rečima, predlozima,
12:55
And then we had to teach her
less-fun words, prepositions --
less-fun words, prepositions --
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12:58
words like "of" and "on" and "in."
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rečima kao što su „od“, „na“ i „u“.
13:01
And we worked on this for a few weeks.
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Radili smo na tome nekoliko nedelja.
13:03
And then I recall sitting
at a dining room table
at a dining room table
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Zatim, sećam se da smo sedeli
za trpezarijskim stolom
za trpezarijskim stolom
13:06
with many relatives,
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1981
sa mnogo rođaka,
13:08
and, apropos of absolutely nothing,
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i onako sasvim uzgred,
13:11
Fiona used her iPad app to say,
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Fiona je upotrebila
aplikaciju na Ajpedu da kaže:
aplikaciju na Ajpedu da kaže:
„kaka u šolji“.
13:15
"poop in toilet."
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13:18
(Laughter)
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(Smeh)
13:20
Good or bad, hard to say.
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Dobro ili loše, teško je reći.
13:22
(Laughter)
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(Smeh)
13:23
My kid is human, that's all.
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Moje dete je ljudsko biće, to je sve.
13:25
And that is a lot.
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A to je velika stvar.
13:28
Thank you.
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Hvala.
13:29
(Applause)
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(Aplauz)
ABOUT THE SPEAKER
Heather Lanier - Essayist, poetHeather Lanier illuminates truths about the human condition that speak to both the head and the heart.
Why you should listen
As an essayist and a poet, Heather Lanier's work spans a range of subjects, from parenting and disability to pop culture and religion. She is the author of two award-winning poetry chapbooks, The Story You Tell Yourself and Heart-Shaped Bed in Hiroshima, along with the nonfiction book, Teaching in the Terrordome: Two Years in West Baltimore with Teach For America, which MacArthur Genius Deborah Meier called "a heart-wrenching … much-needed account." She has received an Ohio Arts Council Individual Excellence Award and a Vermont Creation Grant.
In her viral Vela Magazine essay, "SuperBabies Don't Cry," Lanier chronicles her daughter's diagnosis of a rare chromosomal syndrome and explores the ways pregnant women are pressured to create perfect humans. As a mother and a disability advocate, she shines a light on ableist attitudes, encourages readers to see disability as an aspect of diversity, and marvels at the strange beauty of being human. Her book about raising her daughter is forthcoming from Penguin Press and Piatkus / Little, Brown UK. She writes a related blog here, and teaches writing at Southern Vermont College.
Heather Lanier | Speaker | TED.com