TEDMED 2013
Andrew Solomon: Love, no matter what
安德鲁▪所罗门: 爱，本无条件
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养育一个和你有本质差异的孩子（他/她可能是神童，残疾人或罪犯）有着怎样的感触？在这个平和且感人至深的演讲中，作家安德鲁▪所罗门分享了他和诸多父母的交谈：关于无条件的爱和无条件的接纳之间的那条线
Double-click the English transcript below to play the video.
00:12
"Even in purely non-religious terms,
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“就算抛开宗教信仰的因素，
00:16
homosexuality represents a misuse of the sexual faculty.
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同性恋也是性滥交的代名词
00:22
It is a pathetic little second-rate substitute for reality --
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它是可悲的，次等的，
一种现实的替代品
一种现实的替代品
00:27
a pitiable flight from life.
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是人生中一段令人遗憾的旅程
00:29
As such, it deserves no compassion,
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因此，同性恋不值得同情
00:33
it deserves no treatment
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也不值得治疗
00:36
as minority martyrdom,
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因为只有少数人为此受难
00:38
and it deserves not to be deemed anything but a pernicious sickness."
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同性恋只值得视为一种有害的疾病"
00:45
That's from Time magazine in 1966, when I was three years old.
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上述的话选自1966年发行的
《时代》杂志，那时我只有三岁.
《时代》杂志，那时我只有三岁.
00:50
And last year, the president of the United States
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但是就在去年，美国总统
00:54
came out in favor of gay marriage.
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站出来表示支持同性恋婚姻
00:57
(Applause)
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(鼓掌)
01:04
And my question is, how did we get from there to here?
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我的问题是，我们是如何实现这种态度的转变？
01:10
How did an illness become an identity?
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曾经的疾病是如何成为现在的一种身份认同？
01:15
When I was perhaps six years old,
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当我差不多六岁的时候
01:18
I went to a shoe store with my mother and my brother.
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我和妈妈还有弟弟去一家鞋店
01:21
And at the end of buying our shoes,
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最后，当我们付款买鞋子的时候
01:23
the salesman said to us that we could each have a balloon to take home.
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售货员告诉我们，
我们每个人可以挑选一个气球带回家
我们每个人可以挑选一个气球带回家
01:27
My brother wanted a red balloon, and I wanted a pink balloon.
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我的弟弟想要一个红色的气球，
我想要粉色的气球
我想要粉色的气球
01:32
My mother said that she thought I'd really rather have a blue balloon.
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而我的母亲说她觉得我应该选一个蓝色的气球
01:37
But I said that I definitely wanted the pink one.
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但是我说我想要的毫无疑问是粉色的气球
01:40
And she reminded me that my favorite color was blue.
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她提醒我，我最喜欢的颜色是蓝色
01:46
The fact that my favorite color now is blue, but I'm still gay --
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其结果是，我现在最喜欢的颜色是蓝色，
但我依旧是个同性恋者
但我依旧是个同性恋者
01:51
(Laughter) --
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(笑声)
01:54
is evidence of both my mother's influence and its limits.
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这既反应了母亲对孩子的影响，
也反应了这其中的局限性
也反应了这其中的局限性
01:58
(Laughter)
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(笑声)
02:00
(Applause)
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(鼓掌)
02:07
When I was little, my mother used to say,
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当我很小的时候，
母亲曾经说过
母亲曾经说过
02:10
"The love you have for your children is like no other feeling in the world.
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"父母对子女的爱是世界上
其它一切感情都无法比拟的，
其它一切感情都无法比拟的，
02:14
And until you have children, you don't know what it's like."
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只有当你拥有自己的孩子时，
你才能体会到"
你才能体会到"
02:17
And when I was little, I took it as the greatest compliment in the world
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我小的时候，把母亲讲的
关于抚育我和弟弟的这段话
关于抚育我和弟弟的这段话
02:21
that she would say that about parenting my brother and me.
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当成是世界上最高称赞
02:24
And when I was an adolescent, I thought
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当我成为一个青少年的时候，我想
02:26
that I'm gay, and so I probably can't have a family.
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我是同性恋，
所以我可能不会有自己的家庭
所以我可能不会有自己的家庭
02:30
And when she said it, it made me anxious.
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当母亲说那些话的时候，
我就会感到很焦虑
我就会感到很焦虑
02:32
And after I came out of the closet,
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当我的事公之于众后,
02:33
when she continued to say it, it made me furious.
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母亲还重提此事,
我感到很恼火
我感到很恼火
02:37
I said, "I'm gay. That's not the direction that I'm headed in.
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我说：“我是同性恋。我不会走那条路。
02:41
And I want you to stop saying that."
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我希望你不要再说那些话了。”
02:47
About 20 years ago, I was asked by my editors at The New York Times Magazine
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大约二十年前，
《纽约时报》主编让我
《纽约时报》主编让我
02:52
to write a piece about deaf culture.
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写一篇关于聋人文化的文章
02:54
And I was rather taken aback.
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我感到很惊讶
02:56
I had thought of deafness entirely as an illness.
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我原以为耳聋就是一种疾病
02:58
Those poor people, they couldn't hear.
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那些可怜的人呀，
他们什么都听不见
他们什么都听不见
03:00
They lacked hearing, and what could we do for them?
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如果他们听不见，
我们能为他们做什么呢？
我们能为他们做什么呢？
03:03
And then I went out into the deaf world.
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接下来，我走进了聋人世界
03:05
I went to deaf clubs.
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我去了聋人俱乐部
03:07
I saw performances of deaf theater and of deaf poetry.
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观看了聋人的表演
03:11
I even went to the Miss Deaf America contest in Nashville, Tennessee
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我甚至去了田纳西州纳什维尔的
“美国聋人小姐”选秀赛
“美国聋人小姐”选秀赛
03:17
where people complained about that slurry Southern signing.
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居然有人抱怨她们甜腻的南方手语“口音”
03:21
(Laughter)
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（笑声）
03:25
And as I plunged deeper and deeper into the deaf world,
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随着越来越融入聋人世界
03:29
I become convinced that deafness was a culture
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我开始相信耳聋是一种文化
03:32
and that the people in the deaf world who said,
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并且聋人世界中的人也说，
03:35
"We don't lack hearing, we have membership in a culture,"
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"我们不是听力不健全，
我们是一种文化，"
我们是一种文化，"
03:38
were saying something that was viable.
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这是可行的
03:41
It wasn't my culture,
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这不是我的文化
03:42
and I didn't particularly want to rush off and join it,
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我也没想冲过去加入这种文化
03:45
but I appreciated that it was a culture
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但我欣赏它是一种文化
03:48
and that for the people who were members of it,
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对其中的成员而言
03:50
it felt as valuable as Latino culture or gay culture or Jewish culture.
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它的价值就如同拉美文化，
同性恋文化或犹太文化
同性恋文化或犹太文化
03:56
It felt as valid perhaps even as American culture.
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它甚至可以和美国文化相媲美
04:01
Then a friend of a friend of mine had a daughter who was a dwarf.
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我朋友的朋友有个女儿，是个小矮人
04:04
And when her daughter was born,
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当她女儿出生的时候
04:06
she suddenly found herself confronting questions
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她突然发现她要面对很多问题
04:08
that now began to seem quite resonant to me.
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这些问题使我产生共鸣
04:11
She was facing the question of what to do with this child.
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她当时面临的问题是--该如何对待这个孩子？
04:15
Should she say, "You're just like everyone else but a little bit shorter?"
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她应该说“你和其他人一样，只是矮了点儿”？
04:18
Or should she try to construct some kind of dwarf identity,
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还是去试图建立某种小矮人身份认同
04:22
get involved in the Little People of America,
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加入美国小个子联盟
04:24
become aware of what was happening for dwarfs?
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开始了解矮人生活圈的那些事？
04:27
And I suddenly thought,
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然后我突然想到
04:28
most deaf children are born to hearing parents.
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大多数耳聋孩子的父母
都是听力健全的
都是听力健全的
04:31
Those hearing parents tend to try to cure them.
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那些听力健全的父母
总是试图去治愈他们的孩子
总是试图去治愈他们的孩子
04:34
Those deaf people discover community somehow in adolescence.
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那些聋人要差不多到青春期的时候
才开始接触聋人群体
才开始接触聋人群体
04:38
Most gay people are born to straight parents.
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大多数同性恋者的父母是异性恋
04:40
Those straight parents often want them to function
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那些异性恋父母常常希望
他们的孩子表现得
他们的孩子表现得
04:42
in what they think of as the mainstream world,
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如他们认为的主流世界所期望的那样
04:45
and those gay people have to discover identity later on.
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那些同性恋者不得不长大后才寻找身份认同
04:48
And here was this friend of mine
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再说说我的这个朋友
04:50
looking at these questions of identity with her dwarf daughter.
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面对这些关于她小矮人女儿身份认同的问题
04:53
And I thought, there it is again:
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然后我想，又是这样
04:55
A family that perceives itself to be normal
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一个认为自己正常的家庭
04:58
with a child who seems to be extraordinary.
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有着一个特殊的孩子
05:00
And I hatched the idea that there are really two kinds of identity.
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我想，事实上
身份认同分为两种类型
身份认同分为两种类型
05:05
There are vertical identities,
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有垂直身份认同
05:06
which are passed down generationally from parent to child.
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从父母到孩子，代代相传
05:09
Those are things like ethnicity, frequently nationality, language, often religion.
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也有像是种族，国际，语言，宗教
05:15
Those are things you have in common with your parents and with your children.
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你和你的父母,孩子拥有共同点,
05:20
And while some of them can be difficult,
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而有些身份较难识别,
05:22
there's no attempt to cure them.
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但并不需要尝试去改变
05:24
You can argue that it's harder in the United States --
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你可以争辩说，在美国
05:27
our current presidency notwithstanding --
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作为有色人种生存艰难
05:29
to be a person of color.
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尽管我们现任的总统是有色人种
05:31
And yet, we have nobody who is trying to ensure
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确实，没人试图去保证
05:34
that the next generation of children born to African-Americans and Asians
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非洲裔美国人，亚洲裔的孩子们
05:38
come out with creamy skin and yellow hair.
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生来就有着奶油色的皮肤和金黄的头发
05:41
There are these other identities which you have to learn from a peer group.
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还有一些身份认同
是你从同龄人群中获得的
是你从同龄人群中获得的
05:45
And I call them horizontal identities,
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我称它们为水平身份认同
05:48
because the peer group is the horizontal experience.
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因为和同伴一起活动，
接触，是所谓的一种经验
接触，是所谓的一种经验
05:51
These are identities that are alien to your parents
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这些身份认同与你从父母处得来的不同
05:53
and that you have to discover when you get to see them in peers.
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你需要通过接触同伴自己发掘
05:57
And those identities, those horizontal identities,
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这种身份认同，
我指的是水平身份认同
我指的是水平身份认同
06:00
people have almost always tried to cure.
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就是人们最希望去治愈的部分
06:04
And I wanted to look at what the process is
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我想要研究的是，
这是怎样的过程
这是怎样的过程
06:07
through which people who have those identities
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有着这些身份认同的人们
06:09
come to a good relationship with them.
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是怎么和他们保持好的关系的
06:12
And it seemed to me that there were three levels of acceptance
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在我看来，有三种
06:16
that needed to take place.
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不同程度的接受
06:17
There's self-acceptance, there's family acceptance, and there's social acceptance.
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这三种是，自我接受，家庭接纳，社会接纳
06:23
And they don't always coincide.
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它们并不一定同步发生
06:25
And a lot of the time, people who have these conditions are very angry
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很多时候，这样的人很易怒
06:29
because they feel as though their parents don't love them,
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因为他们觉得，
他们的父母并不爱他们
他们的父母并不爱他们
06:32
when what actually has happened is that their parents don't accept them.
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真实的情况是，
他的父母不接受他们
他的父母不接受他们
06:36
Love is something that ideally is there unconditionally
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最理想的爱就是父母和孩子
06:40
throughout the relationship between a parent and a child.
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之间那种无条件的爱
06:43
But acceptance is something that takes time.
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但接受是需要时间
06:46
It always takes time.
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接受总是需要时间的
06:48
One of the dwarfs I got to know was a guy named Clinton Brown.
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我认识的一个小矮人
名叫克林顿布朗
名叫克林顿布朗
06:53
When he was born, he was diagnosed with diastrophic dwarfism,
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他出生的时候
就被诊断为畸形侏儒症
就被诊断为畸形侏儒症
06:56
a very disabling condition,
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他的残疾非常严重
06:58
and his parents were told that he would never walk, he would never talk,
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他的父母被告知，
他永久丧失行走能力和语言能力
他永久丧失行走能力和语言能力
07:02
he would have no intellectual capacity,
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他也没有获取知识的能力
07:04
and he would probably not even recognize them.
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他甚至也不会认识他的父母
07:06
And it was suggested to them that they leave him at the hospital
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医院给他父母的建议是
把他留在医院
把他留在医院
07:10
so that he could die there quietly.
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他可以在那里平静地离世
07:12
And his mother said she wasn't going to do it.
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他的母亲说，
她不会这样做
她不会这样做
07:14
And she took her son home.
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她把她的儿子带回了家
07:16
And even though she didn't have a lot of educational or financial advantages,
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尽管她没有什么学历，
也不是很富有
也不是很富有
07:19
she found the best doctor in the country
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她还是找到了治疗畸形侏儒症
07:21
for dealing with diastrophic dwarfism,
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全国最顶级的医生
07:24
and she got Clinton enrolled with him.
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她让克林顿接受治疗
07:26
And in the course of his childhood,
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他的童年
07:28
he had 30 major surgical procedures.
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经历了 30次重大外科手术
07:31
And he spent all this time stuck in the hospital
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他一直待在医院里
07:33
while he was having those procedures,
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而正是这些治疗过程
07:35
as a result of which he now can walk.
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让他现在有了行走的能力
07:37
And while he was there, they sent tutors around to help him with his school work.
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他在住院期间，
医院请了家庭教师来指导他的功课
医院请了家庭教师来指导他的功课
07:41
And he worked very hard because there was nothing else to do.
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他学习非常努力，
因为他没有别的事可做
因为他没有别的事可做
07:44
And he ended up achieving at a level
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最终，他达到了
07:46
that had never before been contemplated by any member of his family.
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他家庭内任何成员
都从未达到过的高度
都从未达到过的高度
07:50
He was the first one in his family, in fact, to go to college,
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他是他的家庭成员里
第一个去上大学的人
第一个去上大学的人
07:53
where he lived on campus and drove a specially-fitted car
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他住在学校宿舍并且自己开车
07:56
that accommodated his unusual body.
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一辆为他身体状况特别制造的汽车
07:59
And his mother told me this story of coming home one day --
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他的母亲告诉我一个故事
08:02
and he went to college nearby --
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他去了家附近的大学
08:04
and she said, "I saw that car, which you can always recognize,
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她说 "我看到了那部车，
一眼就认出来是他的车子
一眼就认出来是他的车子
08:07
in the parking lot of a bar," she said. (Laughter)
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停在一家酒吧的停车场，" （笑声）
08:11
"And I thought to myself, they're six feet tall, he's three feet tall.
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"我想了想，
他们六英尺高，他三英尺高
他们六英尺高，他三英尺高
08:16
Two beers for them is four beers for him."
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他们喝两瓶啤酒，
在他那里就相当于四瓶啤酒"。
在他那里就相当于四瓶啤酒"。
08:18
She said, "I knew I couldn't go in there and interrupt him,
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她说，"我知道我不能走进去打扰他
08:21
but I went home, and I left him eight messages on his cell phone."
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但我回家之后，
给他发了八条短信
给他发了八条短信
08:25
She said, "And then I thought,
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她说，"我想
08:27
if someone had said to me when he was born
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在他出生的时候，
如果有人对我说，
如果有人对我说，
08:29
that my future worry would be that he'd go drinking and driving with his college buddies -- "
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我未来的担心是
他会和他大学友人酒后驾车"
他会和他大学友人酒后驾车"
08:34
(Applause)
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（掌声）
08:43
And I said to her, "What do you think you did
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我对她说，
"你觉得你做了什么
"你觉得你做了什么
08:45
that helped him to emerge as this charming, accomplished, wonderful person?"
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帮他成为一个有魅力、 成功、 精彩的人吗?"
08:50
And she said, "What did I do? I loved him, that's all.
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她说，"我做了什么？
我爱他，就这样
我爱他，就这样
08:54
Clinton just always had that light in him.
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克林顿一直都有这样的光芒，
08:57
And his father and I were lucky enough to be the first to see it there."
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他的父亲和我很幸运，
最早看见了他的光芒。”
最早看见了他的光芒。”
09:04
I'm going to quote from another magazine of the '60s.
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我要去引述1960年代
另一家杂志刊载的话
另一家杂志刊载的话
09:07
This one is from 1968 -- The Atlantic Monthly, voice of liberal America --
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这是1968 年出版的大西洋月刊，
美国的自由主义之声
美国的自由主义之声
09:13
written by an important bioethicist.
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作者是知名的生物伦理学专家
09:15
He said, "There is no reason to feel guilty
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他说，"对于遗弃唐氏综合症的婴孩
09:19
about putting a Down syndrome child away,
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我们不必感到内疚
09:22
whether it is put away in the sense of hidden in a sanitarium
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无论是将其送到疗养院去
09:27
or in a more responsible, lethal sense.
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或者用更负责也更致命的方式
09:31
It is sad, yes -- dreadful. But it carries no guilt.
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这很可悲，也很可怕
但不需要有罪恶感
但不需要有罪恶感
09:36
True guilt arises only from an offense against a person,
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真正有内疚只源于侵犯人，
09:40
and a Down's is not a person."
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而唐氏综合症患者不是人。”
09:45
There's been a lot of ink given to the enormous progress that we've made
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关于同性恋者处境的大幅度进步
09:49
in the treatment of gay people.
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已经有很多文章就此发表观点
09:51
The fact that our attitude has changed is in the headlines every day.
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每天都有头条报导
人们对同性恋的态度已有所转变
人们对同性恋的态度已有所转变
09:55
But we forget how we used to see people who had other differences,
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但我们遗忘了过去是怎么看待
不同于大众的人
不同于大众的人
10:00
how we used to see people who were disabled,
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忘了过去是怎么看待残障人士的
10:02
how inhuman we held people to be.
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忘了我们曾经多么不人道
10:05
And the change that's been accomplished there,
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在那些方面的改变
10:07
which is almost equally radical,
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几乎同样激进
10:09
is one that we pay not very much attention to.
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我们却未给予更多的重视
10:11
One of the families I interviewed, Tom and Karen Robards,
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我采访过罗巴兹家族的
汤姆和凯伦夫妇
汤姆和凯伦夫妇
10:15
were taken aback when, as young and successful New Yorkers,
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他们当年是年轻有为的纽约人
10:19
their first child was diagnosed with Down syndrome.
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在得知他们第一个孩子
患有唐氏综合征时大为惊讶
患有唐氏综合征时大为惊讶
10:23
They thought the educational opportunities for him were not what they should be,
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他们认为儿子并未得到应有的教育
10:27
and so they decided they would build a little center --
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于是他们决定成立一个小型教育机构
10:31
two classrooms that they started with a few other parents --
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两间教室里，
他们开始和其他的父母
他们开始和其他的父母
10:34
to educate kids with D.S.
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一起教育唐氏综合症儿童
10:37
And over the years, that center grew into something called the Cooke Center,
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多年后，
该机构发展为库克中心
该机构发展为库克中心
10:41
where there are now thousands upon thousands
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现在有成千上万的
10:43
of children with intellectual disabilities who are being taught.
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智障儿童在这里接受教育
10:47
In the time since that Atlantic Monthly story ran,
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自从大西洋月刊
刊载了那片文章以来
刊载了那片文章以来
10:50
the life expectancy for people with Down syndrome has tripled.
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唐氏综合征患者的寿命
增加了两倍
增加了两倍
10:54
The experience of Down syndrome people includes those who are actors,
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唐氏综合征的人有些是演员
10:59
those who are writers, some who are able to live fully independently in adulthood.
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作家，有些在成年后
能完全独立生活
能完全独立生活
11:05
The Robards had a lot to do with that.
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罗巴兹夫妇的贡献很大
11:07
And I said, "Do you regret it?
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我问他们：“你们会遗憾吗？
11:08
Do you wish your child didn't have Down syndrome?
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你们希望自己的孩子
没有唐氏综合征吗？
没有唐氏综合征吗？
11:11
Do you wish you'd never heard of it?"
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是否希望从未听说过这种病症?"
11:12
And interestingly his father said,
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有趣的是这位父亲说，
11:15
"Well, for David, our son, I regret it,
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"嗯，从我们的儿子大卫角度来看，
我感到遗憾，
我感到遗憾，
11:17
because for David, it's a difficult way to be in the world,
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因为对于大卫来说，
这个世界里唐氏患儿的路走得非常艰辛
这个世界里唐氏患儿的路走得非常艰辛
11:21
and I'd like to give David an easier life.
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我想要给大卫更轻松的生活
11:24
But I think if we lost everyone with Down syndrome, it would be a catastrophic loss."
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但我认为，如果世界上不再有唐氏症患儿，
会是很大的损失。”
会是很大的损失。”
11:29
And Karen Robards said to me, "I'm with Tom.
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凯伦罗巴兹说：“我同意汤姆的看法
11:32
For David, I would cure it in an instant to give him an easier life.
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为了让大卫活得更自在，
我会想瞬间治愈他的唐氏综合症
我会想瞬间治愈他的唐氏综合症
11:36
But speaking for myself -- well, I would never have believed 23 years ago when he was born
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但对我来说，
23 年前他刚出生时，我绝不相信
23 年前他刚出生时，我绝不相信
11:41
that I could come to such a point --
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我能走到今天这一步
11:43
speaking for myself, it's made me so much better and so much kinder
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对我来说，他的病
让我成为更好，更善良的人
让我成为更好，更善良的人
11:48
and so much more purposeful in my whole life,
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让我的人生更有意义
11:51
that speaking for myself, I wouldn't give it up for anything in the world."
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对我来说，这样的经验
是世界上任何其他东西都换不来的"
是世界上任何其他东西都换不来的"
11:57
We live at a point when social acceptance for these and many other conditions
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现代社会对这样那样的病症的接受程度
12:02
is on the up and up.
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越来越高
12:03
And yet we also live at the moment
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然而，此时此刻
12:05
when our ability to eliminate those conditions
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我们治愈这些病症的能力
12:08
has reached a height we never imagined before.
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也已经达到一个前所未有的高度
12:11
Most deaf infants born in the United States now
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现在美国新生的耳聋婴儿
12:14
will receive Cochlear implants,
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都会接受人工耳蜗植入手术，
12:16
which are put into the brain and connected to a receiver,
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将人工耳蜗植入大脑
并连上接收器
并连上接收器
12:21
and which allow them to acquire a facsimile of hearing and to use oral speech.
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通过接收信号，这让他们具有听说的能力
12:26
A compound that has been tested in mice, BMN-111,
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有一种叫 BMN-111的化合物，
经老鼠实验
经老鼠实验
12:30
is useful in preventing the action of the achondroplasia gene.
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在抑制软骨发育不全基因方面
非常有效
非常有效
12:35
Achondroplasia is the most common form of dwarfism,
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软骨发育不全
是侏儒症最常见的表现形式
是侏儒症最常见的表现形式
12:38
and mice who have been given that substance and who have the achondroplasia gene,
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有软骨发育不全基因的小鼠
摄取BMN-11以后
摄取BMN-11以后
12:42
grow to full size.
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可以生长到正常体型
12:44
Testing in humans is around the corner.
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临床试验指日可待
12:46
There are blood tests which are making progress
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通过血液检测唐氏综合症的技术也在进步
12:48
that would pick up Down syndrome more clearly and earlier in pregnancies than ever before,
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可以在怀孕早期
更明确地检测出唐氏综合症
更明确地检测出唐氏综合症
12:54
making it easier and easier for people to eliminate those pregnancies,
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使它更容易尽早终止
12:59
or to terminate them.
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唐氏综合症胎儿妊娠
13:00
And so we have both social progress and medical progress.
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我们的社会进步了，
医学也发展了
医学也发展了
13:05
And I believe in both of them.
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我认同这两方面的进步
13:07
I believe the social progress is fantastic and meaningful and wonderful,
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我相信社会的进步
精彩且有意义
精彩且有意义
13:11
and I think the same thing about the medical progress.
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我认为医学的进步
也是如此
也是如此
13:14
But I think it's a tragedy when one of them doesn't see the other.
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但我认为两者互不理解
着实可悲
着实可悲
13:18
And when I see the way they're intersecting
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当我看到他们交汇的方式
13:20
in conditions like the three I've just described,
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像我刚才描述的三个病例
13:23
I sometimes think it's like those moments in grand opera
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我有时觉得这就像
那些悲壮的歌剧
那些悲壮的歌剧
13:26
when the hero realizes he loves the heroine
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当英雄意识到
他爱上女主角的时候
他爱上女主角的时候
13:29
at the exact moment that she lies expiring on a divan.
238
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就是女主角躺在长沙发上
奄奄一息
奄奄一息
13:33
(Laughter)
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（笑声）
13:36
We have to think about how we feel about cures altogether.
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我们要全盘考量对于治愈的态度
13:40
And a lot of the time the question of parenthood is,
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父母常常面对的问题是
13:43
what do we validate in our children,
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孩子在哪些方面值得肯定
13:45
and what do we cure in them?
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哪些方面需要治愈？
13:47
Jim Sinclair, a prominent autism activist, said,
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有名的自闭症专家，
吉姆 · 辛克莱说，
吉姆 · 辛克莱说，
13:51
"When parents say 'I wish my child did not have autism,'
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"当父母说
'我希望我的孩子没有自闭症，'
'我希望我的孩子没有自闭症，'
13:55
what they're really saying is 'I wish the child I have did not exist
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他们真正的意思是
' 我希望我的孩子并不存在
' 我希望我的孩子并不存在
14:00
and I had a different, non-autistic child instead.'
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而希望有一个没有自闭症的孩子.'
14:04
Read that again. This is what we hear when you mourn over our existence.
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听仔细了，当你们抱怨我们的存在，
我们听到的就是这个意思
我们听到的就是这个意思
14:09
This is what we hear when you pray for a cure --
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你们祈祷奇迹出现的时候，我们听到的是
14:12
that your fondest wish for us
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1905
你们衷心希望
14:14
is that someday we will cease to be
251
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总有一天我们将不复存在
14:17
and strangers you can love will move in behind our faces."
252
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和我们长着相同面孔的陌生人将会取代我们，
得到你们所有的爱
得到你们所有的爱
14:22
It's a very extreme point of view,
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这是一个非常极端的观点，
14:25
but it points to the reality that people engage with the life they have
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但它指出了一个现实，
人们有自己的生活
人们有自己的生活
14:29
and they don't want to be cured or changed or eliminated.
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他们不想要被治愈
或改变或消灭
或改变或消灭
14:34
They want to be whoever it is that they've come to be.
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他们希望，不管是谁，
都能保有与生俱来的天性
都能保有与生俱来的天性
14:37
One of the families I interviewed for this project
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为了这个项目
我采访了迪伦科莱柏德的家庭
我采访了迪伦科莱柏德的家庭
14:41
was the family of Dylan Klebold who was one of the perpetrators of the Columbine massacre.
258
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迪伦柯莱柏德是
哥伦拜恩校园惨案的罪犯之一
哥伦拜恩校园惨案的罪犯之一
14:46
It took a long time to persuade them to talk to me,
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我花了很长的时间
说服他们跟我对话
说服他们跟我对话
14:49
and once they agreed, they were so full of their story
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他们同意了，
有太多的故事
有太多的故事
14:52
that they couldn't stop telling it.
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一开口就无法停下来
14:53
And the first weekend I spent with them -- the first of many --
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我第一次和他们共度周末，
后来还有许多次
后来还有许多次
14:56
I recorded more than 20 hours of conversation.
263
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我录了20 多个小时的谈话内容
14:59
And on Sunday night, we were all exhausted.
264
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到了周日晚上，
大家都精疲力竭
大家都精疲力竭
15:01
We were sitting in the kitchen. Sue Klebold was fixing dinner.
265
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我们坐在厨房里，
苏在做晚饭
苏在做晚饭
15:04
And I said, "If Dylan were here now,
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我说，"如果现在，
迪伦还在这里
迪伦还在这里
15:07
do you have a sense of what you'd want to ask him?"
267
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2845
你们想要问他些什么?"
15:10
And his father said, "I sure do.
268
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他的父亲说，"当然
15:12
I'd want to ask him what the hell he thought he was doing."
269
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我想问问他
究竟为什么这样做"。
究竟为什么这样做"。
15:16
And Sue looked at the floor, and she thought for a minute.
270
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3638
苏望着地板，
思考了一会儿
思考了一会儿
15:19
And then she looked back up and said,
271
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然后抬起头来说，
15:21
"I would ask him to forgive me for being his mother
272
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“我会请他原谅
我不是合格的好母亲
我不是合格的好母亲
15:25
and never knowing what was going on inside his head."
273
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4424
从来不知道他的脑袋里
想的是些什么”
想的是些什么”
15:30
When I had dinner with her a couple of years later --
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几年后，
我再度与她吃晚餐
我再度与她吃晚餐
15:33
one of many dinners that we had together --
275
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1927
那是我们曾经许多共同的晚餐之一
15:35
she said, "You know, when it first happened,
276
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3410
她说，"你知道，
当事情发生的时候
当事情发生的时候
15:38
I used to wish that I had never married, that I had never had children.
277
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我曾经希望我没有结过婚，
也没有孩子
也没有孩子
15:42
If I hadn't gone to Ohio State and crossed paths with Tom,
278
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3492
如果我没有到俄亥俄州立大学，
没遇见汤姆
没遇见汤姆
15:45
this child wouldn't have existed and this terrible thing wouldn't have happened.
279
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3642
这个孩子就不会存在，
这可怕的惨案就不会发生
这可怕的惨案就不会发生
15:49
But I've come to feel that I love the children I had so much
280
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4515
但我觉得我太爱孩子们了
15:54
that I don't want to imagine a life without them.
281
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3303
我不愿想象没有他们的生活
15:57
I recognize the pain they caused to others, for which there can be no forgiveness,
282
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4929
我承认他们对其他人造成的痛苦
是不可饶恕的
是不可饶恕的
16:02
but the pain they caused to me, there is," she said.
283
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3464
但我能宽恕他们对我造成的痛苦。"她说
16:05
"So while I recognize that it would have been better for the world
284
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3792
"所以虽然我承认，
如果迪伦未曾出现在这个世界上
如果迪伦未曾出现在这个世界上
16:09
if Dylan had never been born,
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世界会更美好
16:12
I've decided that it would not have been better for me."
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但我认为那样对我并非更有好处
16:17
I thought it was surprising how all of these families had all of these children with all of these problems,
287
965584
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令人惊讶的是，
这些家庭有这么多子女教育的问题
这些家庭有这么多子女教育的问题
16:24
problems that they mostly would have done anything to avoid,
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这些问题又是他们
常常不惜代价去避免的
常常不惜代价去避免的
16:27
and that they had all found so much meaning in that experience of parenting.
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但她们都发现养儿育女的经验
很有意义
很有意义
16:30
And then I thought, all of us who have children
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然后我想，
我们这些有孩子的人
我们这些有孩子的人
16:34
love the children we have, with their flaws.
291
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2692
不管孩子如何，
我们都疼爱无比
我们都疼爱无比
16:36
If some glorious angel suddenly descended through my living room ceiling
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4256
如果带着光环的天使
突然从客厅天花板降落
突然从客厅天花板降落
16:41
and offered to take away the children I have
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提议要带走我的孩子
16:43
and give me other, better children -- more polite, funnier, nicer, smarter --
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还给我一个更好的孩子，
更有礼貌，风趣，友善，聪明
更有礼貌，风趣，友善，聪明
16:49
I would cling to the children I have and pray away that atrocious spectacle.
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5105
我会紧抓住我自己的孩子，
祈祷残忍地事情不要发生
祈祷残忍地事情不要发生
16:54
And ultimately I feel
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1992
我最终明白
16:56
that in the same way that we test flame-retardant pajamas in an inferno
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就如同我们在火焰中测试防火睡衣
17:00
to ensure they won't catch fire when our child reaches across the stove,
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以确保孩子手伸到炉子上时不会着火
17:05
so these stories of families negotiating these extreme differences
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这些处理特殊情况的家庭的故事
17:09
reflect on the universal experience of parenting,
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反映了普世的育儿经验
17:11
which is always that sometimes you look at your child and you think,
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有时候你看着孩子，
心里想
心里想
17:15
where did you come from?
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你从哪里来？
17:18
(Laughter)
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（笑声）
17:20
It turns out that while each of these individual differences is siloed --
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尽管他们各自面对不同的境况
17:25
there are only so many families dealing with schizophrenia,
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2545
只有一些家庭有精神分裂症患者
17:28
there are only so many families of children who are transgender,
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只有一些家庭的孩子做了变性手术
17:30
there are only so many families of prodigies --
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2194
只有一些家庭出现神童
17:32
who also face similar challenges in many ways --
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在许多方面也面临着相似的挑战
17:35
there are only so many families in each of those categories --
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每个类别也仅有一些家庭
17:37
but if you start to think
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1432
但如果你开始思考
17:39
that the experience of negotiating difference within your family
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3566
那些处理家人间分歧的经验
17:42
is what people are addressing,
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2030
是出现在每个人生活中的
17:44
then you discover that it's a nearly universal phenomenon.
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3737
然后你发现这是一个普遍的现象
17:48
Ironically, it turns out, that it's our differences, and our negotiation of difference,
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讽刺的是，事实证明，
正是我们的不同和我们协商彼此的不同
正是我们的不同和我们协商彼此的不同
17:53
that unite us.
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2428
将我们连结起来
17:55
I decided to have children while I was working on this project.
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5314
当我做这个项目的时候
我决定要孩子
我决定要孩子
18:01
And many people were astonished and said,
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3116
很多人对此感到惊奇
18:04
"But how can you decide to have children
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1848
"你怎么能做出要孩子的决定
18:05
in the midst of studying everything that can go wrong?"
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4106
当你的研究是关于不如意的，
且只进行到一半?"
且只进行到一半?"
18:10
And I said, "I'm not studying everything that can go wrong.
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3230
我说，"我研究的不是那些不如意
18:13
What I'm studying is how much love there can be,
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3091
我研究的是，
有多少爱可以给予
有多少爱可以给予
18:16
even when everything appears to be going wrong."
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1084404
4725
甚至当一切似乎
都是个错误的情况下"。
都是个错误的情况下"。
18:21
I thought a lot about the mother of one disabled child I had seen,
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5635
我想起我见过的一个残疾孩子的母亲
18:26
a severely disabled child who died through caregiver neglect.
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1094764
3772
这个有严重残疾的孩子
因为照料不周而去世
因为照料不周而去世
18:30
And when his ashes were interred, his mother said,
325
1098536
2810
当他的骨灰被安葬的时候，
他的母亲说
他的母亲说
18:33
"I pray here for forgiveness for having been twice robbed,
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1101346
8034
"我在这里祈祷宽恕，
我失去了两个
我失去了两个
18:41
once of the child I wanted and once of the son I loved."
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1109380
6056
一个是我想要的孩子，
一个是我所爱着的儿子”
一个是我所爱着的儿子”
18:47
And I figured it was possible then for anyone to love any child
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1115436
4636
我以为任何一个人
都可以去爱任何孩子
都可以去爱任何孩子
18:52
if they had the effective will to do so.
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2532
如果他们有能力就会这样做
18:54
So my husband is the biological father of two children
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5025
我的丈夫是
两个孩子的亲生父亲
两个孩子的亲生父亲
18:59
with some lesbian friends in Minneapolis.
331
1127629
2761
这两个孩子的母亲是
他在明尼阿波利斯市的女同性恋朋友
他在明尼阿波利斯市的女同性恋朋友
19:02
I had a close friend from college who'd gone through a divorce and wanted to have children.
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1130390
5824
我大学时期有一个亲密的朋友，
她离了婚却也想要孩子
她离了婚却也想要孩子
19:08
And so she and I have a daughter,
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1136214
1898
所以我和她生了一个女儿
19:10
and mother and daughter live in Texas.
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2211
母亲和女儿居住在德克萨斯州
19:12
And my husband and I have a son who lives with us all the time
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1140323
3239
我丈夫和我有个儿子
和我们一起生活
和我们一起生活
19:15
of whom I am the biological father,
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2384
我是他的生父
19:17
and our surrogate for the pregnancy was Laura,
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1145946
3920
为我们代孕的女士是劳拉
19:21
the lesbian mother of Oliver and Lucy in Minneapolis.
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1149881
3048
她是明尼阿波利斯市奥利弗和露西的
女同性恋母亲
女同性恋母亲
19:24
(Applause)
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8655
（掌声）
19:33
So the shorthand is five parents of four children in three states.
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1161584
5464
五位父母，生了四个孩子，
生活在三个不同的州
生活在三个不同的州
19:39
And there are people who think that the existence of my family
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1167048
3356
当然有些人会认为，
这样的家庭的存在
这样的家庭的存在
19:42
somehow undermines or weakens or damages their family.
342
1170404
4665
在某种程度上破坏或削弱
甚至损害了他们的家庭
甚至损害了他们的家庭
19:47
And there are people who think that families like mine
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1175069
3628
也有些人认为
像我们这样的家庭
像我们这样的家庭
19:50
shouldn't be allowed to exist.
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1684
不应该被允许存在
19:52
And I don't accept subtractive models of love, only additive ones.
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5655
我不接受消减中的爱，
只求递增的爱
只求递增的爱
19:58
And I believe that in the same way that we need species diversity
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3526
同时我也相信，
我们需要物种的多样性
我们需要物种的多样性
20:01
to ensure that the planet can go on,
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2251
来确保地球可以延续下去
20:03
so we need this diversity of affection and diversity of family
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4201
因此，我们需要
这种多样化的感情和家庭
这种多样化的感情和家庭
20:08
in order to strengthen the ecosphere of kindness.
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4681
来强化仁慈的生物圈
20:12
The day after our son was born,
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1200695
2370
在我们儿子出生后的第二天
20:15
the pediatrician came into the hospital room and said she was concerned.
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1203065
4572
儿科医生走进病房说
她很担心
她很担心
20:19
He wasn't extending his legs appropriately.
352
1207637
3133
他没有适当地伸展他的双腿
20:22
She said that might mean that he had brain damage.
353
1210770
2909
她说这可能意味着他有脑损伤
20:25
In so far as he was extending them, he was doing so asymmetrically,
354
1213679
3361
当他伸腿时，又很不对称
20:29
which she thought could mean that there was a tumor of some kind in action.
355
1217040
3863
她以为这可能意味着
有某种类型的肿瘤
有某种类型的肿瘤
20:32
And he had a very large head, which she thought might indicate hydrocephalus.
356
1220903
4783
他的头非常大，
她认为这可能意味着他有脑积水
她认为这可能意味着他有脑积水
20:37
And as she told me all of these things,
357
1225686
1630
当她告诉我这些事情的时候
20:39
I felt the very center of my being pouring out onto the floor.
358
1227316
3995
我觉得我的身体要倒下去似的
20:43
And I thought, here I had been working for years
359
1231311
2343
我想，我花很多年写的书
20:45
on a book about how much meaning people had found
360
1233654
2549
关于人们养育残疾子女的经验
20:48
in the experience of parenting children who are disabled,
361
1236203
3533
给他们带来了怎样的意义
20:51
and I didn't want to join their number.
362
1239736
3900
但我还是不想加入他们
20:55
Because what I was encountering was an idea of illness.
363
1243636
2695
我想到的是疾病
20:58
And like all parents since the dawn of time,
364
1246331
2250
就像所有的父母那样，
从孩子出生那刻起
从孩子出生那刻起
21:00
I wanted to protect my child from illness.
365
1248581
3346
我想要我的孩子健康
21:03
And I wanted also to protect myself from illness.
366
1251927
3211
同时我也想自己远离疾病
21:07
And yet, I knew from the work I had done
367
1255138
2560
我的工作经验让我得知
21:09
that if he had any of the things we were about to start testing for,
368
1257698
4107
如果经过哪些检查，
发现他有什么问题
发现他有什么问题
21:13
that those would ultimately be his identity,
369
1261805
3073
那将永久成为他的特性
21:16
and if they were his identity they would become my identity,
370
1264878
4234
如果这是他的特性，也将会是我的特性
21:21
that that illness was going to take a very different shape as it unfolded.
371
1269112
4157
这将不同于病症最初呈现的那样
21:25
We took him to the MRI machine, we took him to the CAT scanner,
372
1273269
3031
我们带他做核磁共振，
带他做计算机化X射线轴向分层造影
带他做计算机化X射线轴向分层造影
21:28
we took this day-old child and gave him over for an arterial blood draw.
373
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3998
我们带着这个出生仅一天的孩子做动脉抽血
21:32
We felt helpless.
374
1280298
1194
我们感到无助
21:33
And at the end of five hours,
375
1281492
1478
五个小时后，
21:34
they said that his brain was completely clear
376
1282970
2224
医生们说他的大脑完全没问题
21:37
and that he was by then extending his legs correctly.
377
1285194
3010
也可以完全正常伸展他的双腿
21:40
And when I asked the pediatrician what had been going on,
378
1288204
2932
当我问儿科医生这是怎么回事，
21:43
she said she thought in the morning he had probably had a cramp.
379
1291136
4335
她说，她觉得早上他可能抽筋了
21:47
(Laughter)
380
1295471
3565
（笑声）
21:51
But I thought how my mother was right.
381
1299036
7833
我认为我的母亲是正确的
21:58
I thought, the love you have for your children
382
1306869
3495
我以为你对自己孩子的爱
22:02
is unlike any other feeling in the world,
383
1310364
3330
是不同于世界上任何其他感觉的
22:05
and until you have children, you don't know what it feels like.
384
1313694
6164
直到你有孩子，
你才知道那是什么样的感觉
你才知道那是什么样的感觉
22:11
I think children had ensnared me
385
1319858
2321
我想是孩子让我
22:14
the moment I connected fatherhood with loss.
386
1322179
3526
认为自己不是个称职的父亲
22:17
But I'm not sure I would have noticed that
387
1325705
1932
但我不确定自己会注意到
22:19
if I hadn't been so in the thick of this research project of mine.
388
1327637
5525
要不是我做了这么繁复的研究项目，
22:25
I'd encountered so much strange love,
389
1333162
3232
我遇到了太多奇怪的爱，
22:28
and I fell very naturally into its bewitching patterns.
390
1336394
3785
然后我很自然地陷入其迷人的模式
22:32
And I saw how splendor can illuminate even the most abject vulnerabilities.
391
1340179
6727
我看到光彩如何照亮最不幸的脆弱之处
22:38
During these 10 years, I had witnessed and learned
392
1346906
3806
在这 10 年期间，我曾目睹和了解到
22:42
the terrifying joy of unbearable responsibility,
393
1350712
3492
那些难以承受的责任，
22:46
and I had come to see how it conquers everything else.
394
1354204
3532
我也看到了它如何克服一切苦难
22:49
And while I had sometimes thought the parents I was interviewing were fools,
395
1357736
4301
我曾经有时会想，
我正在采访的父母是傻瓜
我正在采访的父母是傻瓜
22:54
enslaving themselves to a lifetime's journey with their thankless children
396
1362037
4950
让自己踏上给不知感恩的孩子们一生为奴的旅程
22:58
and trying to breed identity out of misery,
397
1366987
2949
试图从痛苦中获得身份认同
23:01
I realized that day that my research had built me a plank
398
1369936
4636
我意识到，从研究开始那天起，
我已建造了一块踏板
我已建造了一块踏板
随时准备着与他们同舟共济
23:06
and that I was ready to join them on their ship.
399
1374572
3414
23:09
Thank you.
400
1377986
1817
谢谢
23:11
(Applause)
401
1379803
5651
（掌声）
ABOUT THE SPEAKER
Andrew Solomon - WriterAndrew Solomon writes about politics, culture and psychology.
Why you should listen
Andrew Solomon is a writer, lecturer and Professor of Clinical Psychology at Columbia University. He is president of PEN American Center. He writes regularly for The New Yorker and the New York Times.
Solomon's newest book, Far and Away: Reporting from the Brink of Change, Seven Continents, Twenty-Five Years was published in April, 2016. His previous book, Far From the Tree: Parents, Children, and the Search for Identity won the National Book Critics Circle award for nonfiction, the Wellcome Prize and 22 other national awards. It tells the stories of parents who not only learn to deal with their exceptional children but also find profound meaning in doing so. It was a New York Times bestseller in both hardcover and paperback editions. Solomon's previous book, The Noonday Demon: An Atlas of Depression, won the 2001 National Book Award for Nonfiction, was a finalist for the 2002 Pulitzer Prize and was included in The Times of London's list of one hundred best books of the decade. It has been published in twenty-four languages. Solomon is also the author of the novel A Stone Boat and of The Irony Tower: Soviet Artists in a Time of Glasnost.
Solomon is an activist in LGBT rights, mental health, education and the arts. He is a member of the boards of directors of the National LGBTQ Force and Trans Youth Family Allies. He is a member of the Board of Visitors of Columbia University Medical Center, serves on the National Advisory Board of the Depression Center at the University of Michigan, is a director of Columbia Psychiatry and is a member of the Advisory Board of the Depression and Bipolar Support Alliance. Solomon also serves on the boards of the Metropolitan Museum of Art, Yaddo and The Alex Fund, which supports the education of Romani children. He is also a fellow of Berkeley College at Yale University and a member of the New York Institute for the Humanities and the Council on Foreign Relations.
Solomon lives with his husband and son in New York and London and is a dual national. He also has a daughter with a college friend; mother and daughter live in Texas but visit often.
Andrew Solomon | Speaker | TED.com