Love, no matter what | Andrew Solomon

1,014,377 views ・ 2013-06-03

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00:00
Translator: Timothy Covell Reviewer: Morton Bast
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Translator: Jakob Saje Reviewer: Nika Kotnik
00:12
"Even in purely nonreligious terms,
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"Tudi izven verskega pomena,
homoseksualnost predstavlja zlorabo seksualne zmožnosti.
00:17
homosexuality represents a misuse of the sexual faculty.
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00:22
It is a pathetic little second-rate substitute for reality --
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Je patetičen in drugorazredni nadomestek za realnost --
00:27
a pitiable flight from life.
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usmiljenja vreden beg pred življenjem.
Kot tak si ne zasluži sočutja,
00:30
As such, it deserves no compassion,
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00:33
it deserves no treatment as minority martyrdom,
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ne zasluži obravnave
kot mučeništvo manjšine,
in nanj bi morali gledati izključno kot na škodljivo bolezen."
00:39
and it deserves not to be deemed anything but a pernicious sickness."
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00:45
That's from "Time" magazine in 1966, when I was three years old.
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To je iz revije Time iz leta 1966, ko sem imel 3 leta.
Lani je predsednik ZDA,
00:51
And last year, the president of the United States
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00:54
came out in favor of gay marriage.
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javno podprl istospolne poroke.
00:57
(Applause)
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[Aplavz]
Moje vprašanje je, kako smo prišli od tam do tukaj?
01:05
And my question is:
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01:07
How did we get from there to here?
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01:10
How did an illness become an identity?
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Kako je bolezen postala identiteta?
01:15
When I was perhaps six years old,
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Ko sem imel okoli 6 let,
01:18
I went to a shoe store with my mother and my brother.
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sem šel kupovat čevlje z mojo mamo in bratom.
01:21
And at the end of buying our shoes,
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Po koncu nakupov,
01:23
the salesman said to us that we could each have a balloon to take home.
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je prodajalec rekel, da lahko vsak od nas domov vzame balon.
01:27
My brother wanted a red balloon,
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Moj brat si je zaželel rdeč balon in jaz sem si zaželel rožnatega.
01:29
and I wanted a pink balloon.
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Moja mama je rekla, da bi v resnici verjetno raje imel moder balon.
01:33
My mother said that she thought I'd really rather have a blue balloon.
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01:37
(Laughter)
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Ampak jaz sem ji zatrdil, da bi resnično raje rožnatega.
01:38
But I said that I definitely wanted the pink one.
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Spomnila me je, da je moja najljubša barva modra.
01:41
And she reminded me that my favorite color was blue.
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01:46
The fact that my favorite color now is blue, but I'm still gay --
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Dejstvo, da je modra danes moja najljubša barva, a sem še vedno gej --
01:51
(Laughter)
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(smeh) --
01:54
is evidence of both my mother's influence
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Je dokaz o velikem vplivu moje matere in o mejah tega vpliva.
01:57
and its limits.
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01:58
(Laughter)
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(smeh)
02:00
(Applause)
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(aplavz)
02:07
When I was little, my mother used to say,
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Ko sem bil majhen, je moja mama govorila:
02:10
"The love you have for your children is like no other feeling in the world.
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"Ljubezen do svojih otrok je drugačna od vseh drugih občutkov na svetu."
"Dokler sam nimaš otrok, ne veš, kako je."
02:15
And until you have children, you don't know what it's like."
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in ko sem bil majhen je zame največji poklon,
02:18
And when I was little, I took it as the greatest compliment in the world
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02:21
that she would say that about parenting my brother and me.
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da je to govorila o vzgajanju mene in mojega brata.
02:24
And when I was an adolescent, I thought, "But I'm gay,
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In ko sem bil mladostnik, sem si mislil,
da sem gej in da najbrž ne bom mogel imeti družine.
02:27
and so I probably can't have a family."
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02:30
And when she said it, it made me anxious.
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In kadar je to rekla, me je prevzela tesnoba.
02:32
And after I came out of the closet,
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In ko sem javno priznal,
ona pa je še naprej govorila, me je to razbesnelo.
02:34
when she continued to say it, it made me furious.
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02:37
I said, "I'm gay. That's not the direction that I'm headed in.
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Rekel sem: "Gej sem. To najbrž ni pot po kateri bom šel.
02:41
And I want you to stop saying that."
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in rad bi, da nehaš tako govoriti."
02:47
About 20 years ago,
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Pred 20 leti, so me moji uredniki pri New York Timesu prosili,
02:49
I was asked by my editors at the "New York Times Magazine"
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02:52
to write a piece about Deaf culture.
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da napišem članek o "kulturi gluhih".
02:54
And I was rather taken aback.
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To me je presenetilo.
02:56
I had thought of deafness entirely as an illness:
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Biti gluh je bilo zame zgolj bolezen.
02:58
those poor people, they couldn't hear,
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Ti ubogi ljudje, ne morejo slišati,
03:00
they lacked hearing, and what could we do for them?
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kaj lahko naredimo za njih.
03:03
And then I went out into the Deaf world.
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Potem sem pričel spoznavati kulturo gluhih.
03:05
I went to Deaf clubs.
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Šel sem v klube za gluhe,
03:07
I saw performances of Deaf theater and of Deaf poetry.
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videl predstave teatra za gluhe in poezije za gluhe.
Šel sem celo na tekmovanje Miss Amerike gluhih v Tennesse,
03:12
I even went to the Miss Deaf America contest in Nashville, Tennessee,
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03:17
where people complained about that slurry Southern signing.
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kjer so se ljudje pritoževali, nad popačenim južnjaškim znakovanjem.
[smeh]
03:22
(Laughter)
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Bolj, ko sem spoznaval svet gluhih,
03:26
And as I plunged deeper and deeper into the Deaf world,
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bolj sem postajal prepričan, da je biti gluh kultura
03:30
I became convinced that Deafness was a culture
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in da tisti, ki so pravili:
03:33
and that the people in the Deaf world who said,
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03:35
"We don't lack hearing; we have membership in a culture,"
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"Nismo smo brez sluha, smo člani neke kulture,"
03:38
were saying something that was viable.
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sporočali nekaj pomembnega.
03:41
It wasn't my culture,
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To ni bila moja kultura,
03:42
and I didn't particularly want to rush off and join it,
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in nisem se ji pretirano želel pridružiti.
03:45
but I appreciated that it was a culture
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Vendar pa sem cenil, da je kultura
03:48
and that for the people who were members of it,
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in da je njenim članom tako pomembna
03:50
it felt as valuable as Latino culture or gay culture or Jewish culture.
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kot kultura mehičanov ali kultura gejev ali kultura židov.
03:56
It felt as valid, perhaps, even as American culture.
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Morda celo enako pomembna kot ameriška kultura.
04:01
Then a friend of a friend of mine had a daughter who was a dwarf.
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Potem je prijateljica mojega prijatelja rodila pritlikavo hčerko.
Ko je bila njena hčerka rojena,
04:05
And when her daughter was born,
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04:06
she suddenly found herself confronting questions
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se je nenadoma pričela spraševati o vprašanjih,
ki so mi začela zveneti zelo znano.
04:09
that now began to seem quite resonant to me.
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04:11
She was facing the question of what to do with this child.
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Spraševala se je, kaj naj s tem otrokom.
04:15
Should she say, "You're just like everyone else but a little bit shorter?"
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Naj mu govori: "Tak si kot vsi ostali, le nekoliko manjši?"
Ali naj mu pomaga zgraditi nekakšno pritlikavo identiteto.
04:19
Or should she try to construct some kind of dwarf identity,
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04:22
get involved in the Little People of America,
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Se udejstvuje z Malimi Ljudmi Amerike",
04:24
become aware of what was happening for dwarfs?
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se seznani s tem, kar se dogaja na področju pritlikavcev.
04:27
And I suddenly thought,
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Naenkrat sem pomislil,
večina gluhih otrok se rodi slušečim staršem,
04:29
"Most deaf children are born to hearing parents.
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04:31
Those hearing parents tend to try to cure them.
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ti starši jih navadno poskušajo ozdraviti,
04:34
Those deaf people discover community somehow in adolescence.
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ti gluhi ljudje nekje v mladostništvu pričnejo odkrivati skupnosti."
04:38
Most gay people are born to straight parents.
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Večina gejevskih otrok, se rodi hetero staršem.
04:40
Those straight parents often want them to function
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Njihovi starši pogosto želijo, da bi delovali
v, po njihovem mnenju, navadnem svetu,
04:43
in what they think of as the mainstream world,
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04:45
and those gay people have to discover identity later on.
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geji morajo zato svojo identiteto odkrivati pozneje.
04:48
And here was this friend of mine,
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In tu je bila moja prijateljica,
04:50
looking at these questions of identity with her dwarf daughter.
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ki se je spraševala o enakih vprašanjih, glede svoje hčerke.
In mislil sem si, zopet smo tukaj:
04:54
And I thought, "There it is again:
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04:55
a family that perceives itself to be normal
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Družina, ki se dojema kot običajna,
04:58
with a child who seems to be extraordinary."
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z otrokom, ki je neobičajen.
05:00
And I hatched the idea that there are really two kinds of identity.
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In prišel sem do zamisli, da obstajata dve vrsti identitete.
05:05
There are vertical identities,
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Obstajajo navpične identitete,
ki se prenašajo skozi generacije iz staršev na otroke.
05:07
which are passed down generationally from parent to child.
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To so stvari kot etničnost, narodnost, jezik in pogosto veroizpoved.
05:10
Those are things like ethnicity,
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05:12
frequently nationality, language, often religion.
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05:15
Those are things you have in common with your parents and with your children.
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To so stvari, ki so skupne med starši in njihovimi otroci.
05:20
And while some of them can be difficult,
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In čeprav so nekatere od teh težke,
05:22
there's no attempt to cure them.
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ne obstajajo poskusi, da bi jih ozdravili.
05:24
You can argue that it's harder in the United States --
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Lahko trdimo, da je v ZDA težje --
05:27
our current presidency notwithstanding --
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kljub našemu trenutnemu predsedniku --
biti temnopolta oseba.
05:30
to be a person of color.
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05:31
And yet, we have nobody who is trying to ensure
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A kljub temu nihče ne poskuša doseči,
05:34
that the next generation of children born to African-Americans and Asians
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da bi bila naslednja generacija črnih in azijskih otrok
05:38
come out with creamy skin and yellow hair.
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rojena s kremnato kožo in rumenimi lasmi.
Obstajajo tudi druge identitete, katerih se naučimo od svojih vrstnikov.
05:42
There are these other identities which you have to learn from a peer group,
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Imenujem jih vodoravne identitete,
05:46
and I call them "horizontal identities,"
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05:48
because the peer group is the horizontal experience.
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ker so sovrstniki vodoravna izkušnja.
05:51
These are identities that are alien to your parents
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To so identitete, ki so tuje tvojim staršem
05:53
and that you have to discover when you get to see them in peers.
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In ki jih odkrivaš, ko jih vidiš pri vrstnikih.
In te identitete, te vodoravne identitete,
05:58
And those identities, those horizontal identities,
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so ljudje skoraj vedno poskušali ozdraviti.
06:01
people have almost always tried to cure.
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In želel sem si ogledati, na kakšen način
06:05
And I wanted to look at what the process is
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06:07
through which people who have those identities
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ljudje, ki imajo te identitete,
06:09
come to a good relationship with them.
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vzpostavijo dober odnos z njimi.
06:12
And it seemed to me that there were three levels of acceptance
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Zdelo sem mi je, da so trije nivoji sprejemanja
06:16
that needed to take place.
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ki se morajo zgoditi.
To so samo-sprejemanje, sprejemanje v družini in sprejemanje v družbi.
06:18
There's self-acceptance, there's family acceptance, and there's social acceptance.
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06:23
And they don't always coincide.
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In ti ne sovpadajo vedno.
06:25
And a lot of the time, people who have these conditions are very angry,
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In pogosto so ljudje v takšnih stanjih zelo jezni,
06:29
because they feel as though their parents don't love them,
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ker čutijo, kot da jih njihovi starši nimajo radi,
v resnici pa jih njihovi starši zgolj ne sprejemajo.
06:33
when what actually has happened is that their parents don't accept them.
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Ljubezen je nekaj, kar idealno obstaja brez pogojev
06:37
Love is something that, ideally, is there unconditionally
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06:40
throughout the relationship between a parent and a child.
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v celotnem odnosu med staršem in otrokom.
06:43
But acceptance is something that takes time.
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Ampak sprejemanje je nekaj, kar potrebuje čas.
06:46
It always takes time.
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Vedno potrebuje čas.
Eden izmed pritlikavcev, ki sem jih spoznal, je bil Clinton Brown.
06:49
One of the dwarfs I got to know was a guy named Clinton Brown.
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06:53
When he was born, he was diagnosed with diastrophic dwarfism,
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Ko je bil rojen, so ga diagnosticirali z diastrofično pritlikavostjo,
zelo hudo boleznijo,
06:57
a very disabling condition,
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06:58
and his parents were told that he would never walk,
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in staršem so povedali, da ne bo nikoli hodil, govoril,
07:01
he would never talk,
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07:02
he would have no intellectual capacity,
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da ne bo imel umskih sposobnosti,
07:04
and he would probably not even recognize them.
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in da jih najverjetneje ne bo niti prepoznal.
07:06
And it was suggested to them that they leave him at the hospital
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In predlagali so jim, naj ga pustijo v bolnišnici
07:10
so that he could die there quietly.
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da lahko tam umre v tišini.
07:12
His mother said she wasn't going to do it,
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Njegova mama je rekla, da tega ne bo storila
07:14
and she took her son home.
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Svojega sina je vzela domov.
07:16
And even though she didn't have a lot of educational or financial advantages,
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In čeprav ni imela izobrazbe ali finančnih sredstev,
je našla najboljšega zdravnika v državi
07:20
she found the best doctor in the country for dealing with diastrophic dwarfism,
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za obravnavo diastrofične pritlikavosti,
07:24
and she got Clinton enrolled with him.
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in dala Clintona v njegovo oskrbo.
07:26
And in the course of his childhood,
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V svojem otroštvu,
07:28
he had 30 major surgical procedures.
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je imel 30 večjih kirurških posegov.
07:31
And he spent all this time stuck in the hospital
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In ves čas je preždel v bolnišnici
07:33
while he was having those procedures,
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medtem ko je imel te posege,
07:35
as a result of which, he now can walk.
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zaradi katerih lahko danes hodi.
07:37
While he was there, they sent tutors around to help him with his schoolwork,
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In medtem ko je bi tam, so mu poslali učitelje za pomoč pri učenju.
In zelo trdo je delal, ker ni imel nič drugega za početi.
07:42
and he worked very hard, because there was nothing else to do.
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In na koncu dosegel je raven,
07:45
He ended up achieving at a level
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07:46
that had never before been contemplated by any member of his family.
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ki si je nihče v njegovi družini ni predstavljal.
07:50
He was the first one in his family, in fact, to go to college,
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Bil je prvi v svoji družini ki je šel študirat,
07:53
where he lived on campus and drove a specially fitted car
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živel je v kampusu in vozil posebej prilagojen avto,
07:56
that accommodated his unusual body.
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ki je ustrezal njegovemu nenavadnemu telesu.
07:59
And his mother told me the story of coming home one day --
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Njegova mati je pripovedovala, da je neki dan prihajala domov -
08:02
and he went to college nearby --
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obiskoval je bližnjo univerzo -
08:04
and she said, "I saw that car, which you can always recognize,
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in rekla je: "Videla sem njegov avto, ki ga takoj prepoznaš,
08:07
in the parking lot of a bar," she said.
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na parkirišču nekega bara," (smeh)
08:10
(Laughter)
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"In mislila sem si, oni so visoki 1,8 metra, on je visok 1 meter.
08:12
"And I thought to myself,
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08:13
'They're six feet tall, he's three feet tall.
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08:16
Two beers for them is four beers for him.'"
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Dva piva za njih, so štiri piva za njega."
Rekla je: "Vedela sem, da ga ne smem motiti,
08:19
She said, "I knew I couldn't go in there and interrupt him,
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08:21
but I went home, and I left him eight messages on his cell phone."
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zato odšla sem domov in mu pustila 8 sporočil na njegovem telefonu."
08:25
She said, "And then I thought,
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"In potem sem pomislila,
08:27
if someone had said to me, when he was born,
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če bi mi nekdo rekel, ko se je rodil,
08:29
that my future worry would be that he'd go drinking and driving
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da me bo skrbelo, kako bo popival s svojimi študentskimi kolegi --"
08:33
with his college buddies ..."
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08:34
(Laughter)
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(aplavz)
08:36
(Applause)
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08:43
And I said to her,
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In rekel sem ji: "Kaj misliš, da si storila,
08:45
"What do you think you did that helped him to emerge
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da je lahko postal tako prijetna in uspešna oseba?"
08:47
as this charming, accomplished, wonderful person?"
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08:50
And she said, "What did I do?
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In rekla je, "Kaj sem storila? Rada sem ga imela, nič drugega.
08:53
I loved him, that's all.
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Clinton je vedno imel to iskrico v sebi.
08:55
Clinton just always had that light in him.
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Njegov oče in jaz sva samo imela srečo, da sva jo prva videla."
08:58
And his father and I were lucky enough to be the first to see it there."
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09:04
I'm going to quote from another magazine of the '60s.
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Sedaj bom citiral še eno revijo iz 60-ih let.
09:07
This one is from 1968 --
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Tokrat iz leta 1968 -Atlantic Monthly, glas liberalne Amerike -
09:10
"The Atlantic Monthly," voice of liberal America --
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09:13
written by an important bioethicist.
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avtor je pomemben bioetik.
09:15
He said, "There is no reason to feel guilty
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Rekel je: "Nobenega vzroka ni za občutek krivde
09:19
about putting a Down's syndrome child away,
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pri odstranitvi otroka z Downovim sindromom,
tako v smislu, odstranitve v zavod
09:23
whether it is 'put away' in the sense of hidden in a sanitarium
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ali v bolj odgovornem, smrtnem pomenu.
09:28
or in a more responsible, lethal sense.
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Žalostno je, ja -- grozljivo. Vendar ne nosi nobene krivde.
09:32
It is sad, yes. Dreadful.
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09:35
But it carries no guilt.
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Resnična krivda vzide samo iz napada na osebo,
09:37
True guilt arises only from an offense against a person,
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in nekdo z Downom ni oseba."
09:41
and a Down's is not a person."
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09:45
There's been a lot of ink given to the enormous progress that we've made
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Veliko je bilo napisanega o izjemnem napredku, ki smo ga naredili
09:49
in the treatment of gay people.
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pri obravnavi homoseksualnih ljudi.
09:51
The fact that our attitude has changed is in the headlines every day.
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Dejstvo, da se je naš odnos spremenil, je vsak dan v naslovnicah.
09:55
But we forget how we used to see people who had other differences,
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Ampak pozabljamo, kako smo nekoč gledali na ljudi z drugimi posebnostmi,
10:00
how we used to see people who were disabled,
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kako smo nekoč gledali na prizadete ljudi,
10:02
how inhuman we held people to be.
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za kako nečloveške smo jih imeli.
10:05
And the change that's been accomplished there,
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In sprememba na tem področju,
10:07
which is almost equally radical,
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ki je skoraj enako radikalna,
10:09
is one that we pay not very much attention to.
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ni bila deležna tolikšne pozornosti.
Ena izmed intervjuvanih sta bila tudi Tom in Karen Robards,
10:12
One of the families I interviewed, Tom and Karen Robards,
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mlada in uspešna Newyorčanoma, ki sta bila presenečena, ko se jima je,
10:16
were taken aback when, as young and successful New Yorkers,
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10:19
their first child was diagnosed with Down syndrome.
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prvorojeni otrok rodil z Downovim sindromom.
10:23
They thought the educational opportunities for him were not what they should be,
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Ugotovila sta, da izobraževalne možnosti zanj niso bile zadostne,
10:27
and so they decided they would build a little center --
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zato sta se odločila, da bosta zgradila manjši center --
10:31
two classrooms that they started with a few other parents --
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dve učilnici, ki sta jih odprla z nekaj drugimi starši --
10:34
to educate kids with DS.
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da bi izobrazila ljudi z D.S.
10:37
And over the years, that center grew into something called the Cooke Center,
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Skozi leta je ta center zrastel v nekaj, kar se danes imenuje Cooke Center,
10:41
where there are now thousands upon thousands of children
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kjer danes uči tisoče in tisoče
umsko manj razviih otrok.
10:44
with intellectual disabilities
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10:45
who are being taught.
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10:47
In the time since that "Atlantic Monthly" story ran,
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V času od nastanka zgodbe v Atlantic Monthly,
10:50
the life expectancy for people with Down syndrome has tripled.
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se je pričakovana življenjska doba oseb z Downovim sindromom potrojila.
Med osebami z Downovim sindromom so igralci,
10:55
The experience of Down syndrome people includes those who are actors,
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10:59
those who are writers, some who are able to live fully independently in adulthood.
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pisatelji in nekateri, ki so kot odrasli zmožni živeti povsem neodvisno.
11:05
The Robards had a lot to do with that.
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Robardova sta igrala veliko vlogo pri tem.
11:07
And I said, "Do you regret it?
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In vprašal sem ju: "Ali obžalujeta?
11:08
Do you wish your child didn't have Down syndrome?
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Si želita, da vajin otrok ne bi imel Downovega sindroma?
11:11
Do you wish you'd never heard of it?"
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Si želita, da zanj ne bi nikoli slišala?"
In zanimivo je oče odgovoril,
11:13
And interestingly, his father said,
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11:15
"Well, for David, our son, I regret it,
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"Za David, najinega sina, obžalujem,
kajti za Davida, je to težek način bivanja v svetu.
11:18
because for David, it's a difficult way to be in the world,
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11:21
and I'd like to give David an easier life.
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in želim si, da bi Davidu lahko omogočil lažje življenje.
11:24
But I think if we lost everyone with Down syndrome,
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Vendar bi bilo izguba vseh z Downovim sindromom katastrofalna izguba.
11:27
it would be a catastrophic loss."
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11:29
And Karen Robards said to me, "I'm with Tom.
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in Karen Robards mi je rekla: "Strinjam se s Tomom.
11:32
For David, I would cure it in an instant, to give him an easier life.
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Za Davida, bi v trenutku želela ozdravitve, za lažje življenje.
11:36
But speaking for myself --
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Vendar za mene, ne bi nikoli verjela pred 23 leti, ko se je rodil,
11:38
well, I would never have believed 23 years ago when he was born
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da bi lahko prišla do te točke --
11:42
that I could come to such a point.
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mene osebno, je naredil veliko boljšo in veliko nežnejšo
11:44
Speaking for myself, it's made me so much better and so much kinder
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11:48
and so much more purposeful in my whole life that, speaking for myself,
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in veliko bolj osmišljeno v mojem življenju,
da se mu jaz osebno ne bi odpovedala za vse na svetu."
11:53
I wouldn't give it up for anything in the world."
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Živimo v trenutku, ko je družbeno sprejemanje teh in podobnih bolezni
11:58
We live at a point when social acceptance for these and many other conditions
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12:02
is on the up and up.
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v velikem porastu.
A vendar živimo tudi v trenutku,
12:04
And yet we also live at the moment
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ko je naša sposobnost izničiti takšne bolezni
12:06
when our ability to eliminate those conditions
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12:08
has reached a height we never imagined before.
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dosegla raven, ki si je nikoli prej nismo zamišljali.
12:11
Most deaf infants born in the United States now
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Večina danes rojenih gluhih dojenčkov v ZDA,
12:14
will receive cochlear implants,
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bo dobila polžev vsadek,
12:16
which are put into the brain and connected to a receiver,
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ki ga vstavijo v možgane in povežejo s prejemnikom,
12:21
and which allow them to acquire a facsimile of hearing
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in ki jim omogoča približek sluha in ustni govor.
12:24
and to use oral speech.
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12:26
A compound that has been tested in mice, BMN-111,
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Sestavina, ki je bila testirana v miših, BMN-111,
12:30
is useful in preventing the action of the achondroplasia gene.
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je uporabna pri preprečevanju delovanja ahondroplazničnega gena.
12:35
Achondroplasia is the most common form of dwarfism,
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Ahondroplazija je najpogostejša oblika pritlikavosti
12:38
and mice who have been given that substance
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in miši, ki so dobile to sestavino in ki imajo ahondroplaznični gen,
12:40
and who have the achondroplasia gene
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12:42
grow to full size.
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vseeno zrastejo do polne velikosti.
12:44
Testing in humans is around the corner.
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Človeško testiranje naj bi se pričelo vsak hip.
12:46
There are blood tests which are making progress
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Napredek je tudi pri krvnih testih,
ki lahko med nosečnostjo prepoznajo Downov sindrom jasneje in hitreje kot prej,
12:49
that would pick up Down syndrome more clearly and earlier in pregnancies
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12:53
than ever before,
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12:54
making it easier and easier for people to eliminate those pregnancies,
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s čimer je vedno lažje za ljudi, da izničijo tovrstne nosečnosti,
12:59
or to terminate them.
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ali da jih prekinejo.
13:00
So we have both social progress and medical progress.
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Naredili smo torej tako družbeni kot zdravstveni napredek.
13:05
And I believe in both of them.
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In verjamem v oba.
13:07
I believe the social progress is fantastic and meaningful and wonderful,
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Verjamem, da je družbeni napredek izjemen in navdihujoč in čudovit,
13:11
and I think the same thing about the medical progress.
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in enako mislim tudi o zdravstvenem napredku.
13:14
But I think it's a tragedy when one of them doesn't see the other.
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Mislim pa da je tragedija, ko eden ne prepozna drugega.
In ko vidim, kako se prepletata
13:19
And when I see the way they're intersecting
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v boleznih, kot so tri, ki sem jih ravno opisal,
13:21
in conditions like the three I've just described,
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13:23
I sometimes think it's like those moments in grand opera
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včasih mislim, da gre za enega od tistih trenutkov v operi,
ko junak ugotovi da ljubi junakinjo
13:27
when the hero realizes he loves the heroine
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13:29
at the exact moment that she lies expiring on a divan.
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natanko v trenutku, ko ona umira na divanu.
(smeh)
13:34
(Laughter)
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Moramo razmisliti o tem, kaj si na splošno mislimo o zdravilih.
13:37
We have to think about how we feel about cures altogether.
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13:40
And a lot of the time the question of parenthood is:
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Pogosto je vprašanje starševstva,
13:43
What do we validate in our children,
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kaj podpiramo v naših otrocih,
13:45
and what do we cure in them?
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in kaj v njih zdravimo?
13:47
Jim Sinclair, a prominent autism activist, said,
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Jim Sinclair, priznani aktivist avtizma, je rekel:
13:51
"When parents say, 'I wish my child did not have autism,'
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"Ko starši rečejo, 'želim si, da moj otrok ne bi imel avtizma,'
kar v resnici pravijo je, 'želim si, da otrok, ki ga imam, ne bi obstajal
13:56
what they're really saying is, 'I wish the child I have did not exist
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14:00
and I had a different, nonautistic child instead.'
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in da bi imel drugega, ne-avtističnega otroka.'
14:04
Read that again. This is what we hear when you mourn over our existence.
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Preberite to še enkrat. To slišimo, ko obžalujete naš obstoj.
14:09
This is what we hear when you pray for a cure:
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To slišimo, ko molite za zdravilo --
da je vaša največja želja za nas,
14:13
that your fondest wish for us is that someday we will cease to be,
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da bi nekega dne prenehali obstajati
14:17
and strangers you can love will move in behind our faces."
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in da bi si tujci, ki bi jih lahko ljubili, nadeli naše obraze."
To je zelo ekstremen pogled,
14:23
It's a very extreme point of view,
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14:25
but it points to the reality that people engage with the life they have
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a vseeno kaže na dejstvo, da se ljudje spopadajo z življenjem, ki ga imajo
in da si ne želijo biti ozdravljeni, spremenjeni ali uničeni.
14:30
and they don't want to be cured or changed or eliminated.
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14:34
They want to be whoever it is that they've come to be.
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Želijo si biti, kdor koli že so postali.
Ena izmed družin, ki sem jih spraševal pri tem projektu,
14:38
One of the families I interviewed for this project
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14:41
was the family of Dylan Klebold,
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je bila družina Dylana Klebolda, ki je bil eden od morilcev v Columbinskem pokolu.
14:43
who was one of the perpetrators of the Columbine massacre.
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Dolgo časa sem jih prepričeval, naj govorijo z mano,
14:47
It took a long time to persuade them to talk to me,
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14:49
and once they agreed, they were so full of their story
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ko so pristali, so bili tako polni svoje zgodbe,
14:52
that they couldn't stop telling it,
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da niso mogli nehati pripovedovati.
Prvi vikend ki sem ga preživel z njimi, prvi izmed mnogih,
14:54
and the first weekend I spent with them, the first of many,
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14:56
I recorded more than 20 hours of conversation.
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sem posnel več kot 20 ur pogovora.
14:59
And on Sunday night, we were all exhausted.
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V nedeljo zvečer smo bili vsi izmučeni.
15:01
We were sitting in the kitchen. Sue Klebold was fixing dinner.
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Sedeli smo v kuhinji. Sue Klebold je pripravljala večerjo.
In rekel sem: "Če bi bil Dylan sedaj tu,
15:05
And I said, "If Dylan were here now,
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15:07
do you have a sense of what you'd want to ask him?"
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imate občutek, kaj bi mu želeli reči?"
15:10
And his father said, "I sure do.
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In njegov oče mi je rekel, " Seveda vem.
15:12
I'd want to ask him what the hell he thought he was doing."
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Želel bi ga vprašati, kaj za vraga je mislil, da počne."
15:16
And Sue looked at the floor, and she thought for a minute.
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Sue je pogledala v tla in pomislila.
Nato je pogledala nazaj in rekla:
15:20
And then she looked back up and said,
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"Jaz bi ga prosila za odpuščanje, da sem bila njegova mati
15:22
"I would ask him to forgive me for being his mother
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in da nisem nikoli vedela, kaj se plete v njegovi glavi."
15:26
and never knowing what was going on inside his head."
293
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15:30
When I had dinner with her a couple of years later --
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2945
Ko sem imel nekaj let pozneje z njo večerjo --
15:33
one of many dinners that we had together --
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2213
eno izmed mnogih skupnih večerji, ki sva jih imela --
15:35
she said, "You know, when it first happened,
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Mi je rekla: "Veš, ko je zgodilo,
15:38
I used to wish that I had never married, that I had never had children.
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sem si najprej želela, da se ne bi nikoli poročila in imela otrok.
15:42
If I hadn't gone to Ohio State and crossed paths with Tom,
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Če ne bi šla v Ohio in srečala Toma,
ta otrok ne bi obstajal in ta grozna stvar se ne bi zgodila.
15:46
this child wouldn't have existed,
299
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15:47
and this terrible thing wouldn't have happened.
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Vendar sem sčasoma začutila da ljubim otroke, ki sem jih imela,
15:50
But I've come to feel that I love the children I had so much
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15:54
that I don't want to imagine a life without them.
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da si ne želim zamišljati življenja brez njih.
15:57
I recognize the pain they caused to others,
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2847
Prepoznavam bolečino, ki so jo povzročili in ki nima opravičila,
16:00
for which there can be no forgiveness,
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16:02
but the pain they caused to me, there is," she said.
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a za bolečino, ki so jo povzročili meni, je," mi je rekla.
"Razumem, da bi bilo bolje za svet,
16:06
"So while I recognize that it would have been better for the world
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16:09
if Dylan had never been born,
307
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2546
če se Dylan ne bi rodil,
16:12
I've decided that it would not have been better for me."
308
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4195
vendar sem se odločila, da to ne bi bilo bolje zame."
Presenetilo me je, kako so vse te družine imele otroke s toliko problemi,
16:18
I thought it was surprising
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16:19
how all of these families had all of these children
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16:22
with all of these problems,
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16:24
problems that they mostly would have done anything to avoid,
312
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3052
za katere bi večina od nas storila vse, da bi se jim lahko izognili.
16:27
and that they had all found so much meaning in that experience of parenting.
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3890
in da so vsi našli toliko pomena, v tej izkušnji.
In potem sem pomisli, vsi, ki imamo otroke,
16:31
And then I thought, all of us who have children
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16:34
love the children we have, with their flaws.
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ljubimo otroke, ki jih imamo z njihovimi napakami.
Če bi se angel nenadoma spustil skozi strop moje dnevne sobe
16:37
If some glorious angel suddenly descended through my living-room ceiling
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16:41
and offered to take away the children I have
317
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2202
in ponudil, da odvzame moje otroke
16:43
and give me other, better children --
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2329
in mi ponudil druge - vljudnejše, zabavnejše, prijaznejše, pametnejše --
16:45
more polite, funnier, nicer, smarter --
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3446
16:49
(Laughter)
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bi objel svoje otroke in molil, da ta grozljiva prikazen izgine.
16:50
I would cling to the children I have and pray away that atrocious spectacle.
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4594
In konec koncev mislim,
16:55
And ultimately,
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16:56
I feel that in the same way that we test flame-retardant pajamas in an inferno
323
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4485
da tako kot preizkušamo na ogenj odporne pižame v ognju,
17:00
to ensure they won't catch fire when our child reaches across the stove,
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da zagotovimo, da se ne bodo vžgale, ko naši otroci segajo po štedilniku,
17:05
so these stories of families negotiating these extreme differences
325
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4013
enako zgodbe o družinah, ki premagujejo te izjemne razlike
17:09
reflect on the universal experience of parenting,
326
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kažejo na univerzalno izkušnjo starševstva,
17:11
which is always that sometimes, you look at your child, and you think,
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4520
ki je v tem, da občasno gledamo svojega otroka in si mislimo,
od kod si se vzel?
17:16
"Where did you come from?"
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1936
17:18
(Laughter)
329
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2524
(smeh)
17:20
It turns out that while each of these individual differences is siloed --
330
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Izkazalo se je, da kljub temu, da je vsaka teh različnosti zamejena-
17:25
there are only so many families dealing with schizophrenia,
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2785
obstaja zgolj toliko družin, ki se ukvarjajo s shizofenijo,
17:28
only so many families of children who are transgender,
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samo toliko družin s transseksualnimi otroci,
samo toliko družin z genialnimi otroci, -
17:31
only so many families of prodigies --
333
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1862
17:32
who also face similar challenges in many ways --
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2489
ki se pogosto srečujejo s podobnimi izzivi -
17:35
there are only so many families in each of those categories.
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obstaja zgolj toliko družin v vsaki od teh kategorij -
ampak če,
17:38
But if you start to think
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17:39
that the experience of negotiating difference within your family
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je izkušnja premagovanja razlik v družini,
tisto s čimer se ukvarjajo,
17:43
is what people are addressing,
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potem ugotoviš, da je to skorajda univerzalni pojav.
17:45
then you discover that it's a nearly universal phenomenon.
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17:48
Ironically, it turns out,
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Ironično se izkaže, da so naše razlike in poskusi premagovanja teh razlik,
17:50
that it's our differences and our negotiation of difference
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17:53
that unite us.
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tisto, kar nas združuje.
17:55
I decided to have children while I was working on this project.
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Da bom imel otroke, sem se odločil med tem projektom.
18:01
And many people were astonished and said,
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Veliko ljudi je bilo presenečenih in mi reklo:
18:04
"But how can you decide to have children
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"Kako se lahko odločiš za otroke,
medtem ko preučuješ vse, kar gre lahko narobe."
18:06
in the midst of studying everything that can go wrong?"
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18:10
And I said, "I'm not studying everything that can go wrong.
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Rekel sem jim: "Ne preučujem, vse kar gre lahko narobe."
18:13
What I'm studying is how much love there can be,
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Ampak koliko ljubezni lahko obstaja,
18:16
even when everything appears to be going wrong."
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tudi takrat, ko se zdi, da gre vse narobe."
18:21
I thought a lot about the mother of one disabled child I had seen,
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Veliko sem premišljal o materi enega izmed prizadetih otrok,
močno prizadetega otroka, ki je umrl zaradi zanemarjanja negovalcev.
18:27
a severely disabled child who died through caregiver neglect.
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18:30
And when his ashes were interred, his mother said,
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in ko je bil njegov pepel položen, mi je njegova mati rekla:
"Molim za odpuščanje, ker sem bila oropana dvakrat,
18:34
"I pray here for forgiveness for having been twice robbed:
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18:41
once of the child I wanted,
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prvič za otroka, ki sem ga želela in drugič za sina, ki sem ga ljubila."
18:44
and once of the son I loved."
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18:47
And I figured it was possible, then, for anyone to love any child,
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Takrat sem ugotovil, da lahko kdorkoli ljubi kakršnega koli otroka,
18:52
if they had the effective will to do so.
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če ima voljo, da to stori.
Moj mož je biološki oče dveh otrok,
18:55
So, my husband is the biological father of two children
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18:59
with some lesbian friends in Minneapolis.
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našima lezbičnima prijateljicama v Minneapolisu.
Imel sem bližnjo prijateljico na faksu, ki je po ločitvi želela imeti otroke.
19:03
I had a close friend from college who'd gone through a divorce
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19:06
and wanted to have children.
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19:08
And so she and I have a daughter,
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Ona in jaz imava hčerko,
19:10
and mother and daughter live in Texas.
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mati in hčerka živita v Teksasu.
19:12
And my husband and I have a son who lives with us all the time,
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Moj mož in jaz pa imava sina, ki je ves čas z nama,
19:15
of whom I am the biological father,
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kateremu sem jaz biološki oče,
naša nadomestna mama za nosečnost, pa je bila Laura,
19:18
and our surrogate for the pregnancy was Laura,
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19:21
the lesbian mother of Oliver and Lucy in Minneapolis.
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lezbična mama Oliverja in Lucy v Minneapolisu.
19:24
(Laughter)
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(aplavz)
19:26
So --
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19:27
(Applause)
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Torej pet staršev, štirje otroci v treh različnih zveznih državah.
19:34
The shorthand is: five parents of four children in three states.
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19:38
(Laughter)
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19:39
And there are people who think that the existence of my family
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In nekateri mislijo, da obstoj moje družine
19:42
somehow undermines or weakens or damages their family.
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na nek način spodkopava, slabi ali škoduje njihovi družini.
19:47
And there are people who think that families like mine
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in obstajajo ljudje, ki mislijo, da družine, kot je moja
19:50
shouldn't be allowed to exist.
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ne bi smele obstajati.
19:52
And I don't accept subtractive models of love,
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Ampak jaz ne sprejemam izključujočih idej ljubezni, samo vključujoče.
19:56
only additive ones.
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19:58
And I believe that in the same way that we need species diversity
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In verjamem, da tako kot potrebujemo raznolikost vrst,
20:01
to ensure that the planet can go on,
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da zagotovimo obstoj planeta,
potrebujemo tudi raznolikost ljubezni in raznolikost družin,
20:04
so we need this diversity of affection and diversity of family
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20:08
in order to strengthen the ecosphere of kindness.
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3279
da ojačamo ekosfero prijaznosti.
Na dan, ko je bil rojen najin sin,
20:13
The day after our son was born,
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2398
20:15
the pediatrician came into the hospital room
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2439
je pediatrinja prišla v sobo in rekla, da je zaskrbljena.
20:17
and said she was concerned.
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20:19
He wasn't extending his legs appropriately.
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Otrok ni pravilno iztegoval svojih nog.
Rekla je, da to lahko pomeni, da ima možganske poškodbe.
20:23
She said that might mean that he had brain damage.
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20:25
Insofar as he was extending them, he was doing so asymmetrically,
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Tudi ko jih je iztegoval, je to počel asimetrično,
20:29
which she thought could mean that there was a tumor of some kind in action.
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kar bi lahko nakazovalo na učinek nekakšnega tumorja.
Imel je tudi zelo veliko glavo, kar bi lahko kazalo na hidrocefalus.
20:33
And he had a very large head,
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20:34
which she thought might indicate hydrocephalus.
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2935
20:37
And as she told me all of these things,
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In ko mi je govorila vse te reči,
20:39
I felt the very center of my being pouring out onto the floor.
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3821
sem čutil, kako vse moje bistvo, pada na tla.
20:43
And I thought, "Here I had been working for years
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2448
Mislim sem si, vsa ta leta sem delal
20:45
on a book about how much meaning people had found
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2525
na knjigi o tem, kako veliko pomena,
20:48
in the experience of parenting children who were disabled,
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3633
so ljudje našli v prizadetih otrocih,
in sam se jim nisem želel pridružiti.
20:52
and I didn't want to join their number
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3478
20:55
because what I was encountering was an idea of illness."
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2774
Ker sem se spopadal z idejo bolezni.
20:58
And like all parents since the dawn of time,
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2742
In kot vsak starš že od pradavnine,
sem hotel zaščiti svoje otroke pred boleznijo.
21:01
I wanted to protect my child from illness.
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2977
Hotel sem tudi zaščititi sebe pred boleznijo.
21:04
And I wanted, also, to protect myself from illness.
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3243
21:07
And yet, I knew from the work I had done
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2747
A vseeno sem vedel, zaradi dela, ki sem ga opravil,
da če ima katero koli od omenjenih stvari,
21:10
that if he had any of the things we were about to start testing for,
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1270265
3816
da bodo te sčasoma postale njegova identiteta.
21:14
that those would ultimately be his identity,
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2963
In da če bodo njegova identiteta, da bodo postale tudi moja identiteta,
21:17
and if they were his identity, they would become my identity,
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1277092
4039
21:21
that that illness was going to take a very different shape as it unfolded.
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4268
da bo ta bolezen s časom postala zelo drugačna.
21:25
We took him to the MRI machine, we took him to the CAT scanner,
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3129
Peljali smo ga na MRI in na tomografijo,
21:28
we took this day-old child and gave him over for an arterial blood draw.
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3784
en dan starega otroka sva oddala za odvzem krvi.
21:32
We felt helpless.
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1261
Počutila sva se nemočna.
21:33
And at the end of five hours,
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1657
Po petih urah,
so rekli, da so njegovi možgani povsem zdravi
21:35
they said that his brain was completely clear
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2212
21:37
and that he was by then extending his legs correctly.
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2778
in da sedaj že pravilno izteguje noge.
21:40
And when I asked the pediatrician what had been going on,
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3000
In ko sem pediatrinjo vprašal, kaj se je dogajalo,
21:43
she said she thought in the morning, he had probably had a cramp.
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4160
je rekla, da je zjutraj verjetno imel krč.
21:47
(Laughter)
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3451
(smeh)
21:51
But I thought --
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1262
Ampak jaz sem razmišljal, kako prav je imela moja mati.
21:52
(Laughter)
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3925
21:56
I thought how my mother was right.
418
1316330
2599
21:58
I thought, "The love you have for your children
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3472
Mislil sem si, da je ljubezen do svojih otrok,
22:02
is unlike any other feeling in the world.
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3362
drugačna od vseh ostalih občutkov na svetu
22:05
And until you have children, you don't know what it feels like.
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4673
in dokler nimaš svojih otrok, ne veš kakšna je.
Mislim, da so me otroci ujeli
22:12
I think children had ensnared me
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2136
22:14
the moment I connected fatherhood with loss.
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tisti trenutek, ko sem povezal očetovstvo z izgubo.
Vendar nisem prepričan, da bi to opazil,
22:18
But I'm not sure I would have noticed that
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2034
če ne bi bil tako močno prisoten v mojem projektu.
22:20
if I hadn't been so in the thick of this research project of mine.
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4344
22:25
I'd encountered so much strange love,
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3116
Spoznal sem toliko nenavadne ljubezni,
22:28
and I fell very naturally into its bewitching patterns.
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3721
in tako sem zelo naravno padel v njen čarobni vzorec.
22:32
And I saw how splendor can illuminate even the most abject vulnerabilities.
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5873
Videl sem, kako lahko lepota razsvetli tudi najbolj grozljive ranljivosti.
Tekom teh 10 let, sem pričeval in spoznal
22:39
During these 10 years, I had witnessed and learned
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3782
zastrašujoči občutek neznosne odgovornosti
22:43
the terrifying joy of unbearable responsibility,
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3552
22:46
and I had come to see how it conquers everything else.
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3088
in spoznal sem, kako lahko premaga vse ostalo.
In čeprav sem občasno mislil, da so starši, ki jih sprašujem, neumni,
22:50
And while I had sometimes thought the parents I was interviewing were fools,
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22:54
enslaving themselves to a lifetime's journey with their thankless children
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4997
da so sužnji doživljenjskega potovanja z nehvaležnimi otroci,
ki jim poskušajo ustvariti identiteto iz trpljenja,
22:59
and trying to breed identity out of misery,
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3158
sem spoznal, da mi je moja raziskava zgradila pomol,
23:02
I realized that day that my research had built me a plank
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4623
in da sem se pripravljen pridružiti njihovi ladji.
23:07
and that I was ready to join them on their ship.
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Hvala.
23:10
Thank you.
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23:11
(Applause and cheers)
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(aplavz)
23:20
Thank you.
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