And I said to her, "What do you think you did
我對她說, "你覺得你做了什么
that helped him to emerge as this charming, accomplished, wonderful person?"
幫他成為一個(gè)有魅力、成功、精彩的人嗎?"
And she said, "What did I do? I loved him, that's all.
她說,"我做了什么?我愛他,就這樣
Clinton just always had that light in him.
克林頓一直都有這樣的光芒,
And his father and I were lucky enough to be the first to see it there."
他的父親和我很幸運(yùn),最早看見了他的光芒。”
I'm going to quote from another magazine of the '60s.
我要去引述1960年代,另一家雜志刊載的話
This one is from 1968 -- The Atlantic Monthly, voice of liberal America --
這是1968年出版的大西洋月刊,美國的自由主義之聲
written by an important bioethicist.
作者是知名的生物倫理學(xué)專家
He said, "There is no reason to feel guilty
他說,"對于遺棄唐氏綜合癥的嬰孩
about putting a Down syndrome child away,
我們不必感到內(nèi)疚
whether it is put away in the sense of hidden in a sanitarium
無論是將其送到療養(yǎng)院去
or in a more responsible, lethal sense.
或者用更負(fù)責(zé)也更致命的方式
It is sad, yes -- dreadful. But it carries no guilt.
這很可悲,也很可怕,但不需要有罪惡感
True guilt arises only from an offense against a person,
真正有內(nèi)疚只源于侵犯人,
and a Down's is not a person."
而唐氏綜合癥患者不是人。”
There's been a lot of ink given to the enormous progress that we've made
關(guān)于同性戀者處境的大幅度進(jìn)步
in the treatment of gay people.
已經(jīng)有很多文章就此發(fā)表觀點(diǎn)
The fact that our attitude has changed is in the headlines every day.
每天都有頭條報(bào)導(dǎo),人們對同性戀的態(tài)度已有所轉(zhuǎn)變
But we forget how we used to see people who had other differences,
但我們遺忘了過去是怎么看待,不同于大眾的人
how we used to see people who were disabled,
忘了過去是怎么看待殘障人士的
how inhuman we held people to be.
忘了我們曾經(jīng)多么不人道
And the change that's been accomplished there,
在那些方面的改變
which is almost equally radical,
幾乎同樣激進(jìn)
is one that we pay not very much attention to.
我們卻未給予更多的重視
One of the families I interviewed, Tom and Karen Robards,
我采訪過羅巴茲家族的,湯姆和凱倫夫婦
were taken aback when, as young and successful New Yorkers,
他們當(dāng)年是年輕有為的紐約人
their first child was diagnosed with Down syndrome.
在得知他們第一個(gè)孩子,患有唐氏綜合征時(shí)大為驚訝
They thought the educational opportunities for him were not what they should be,
他們認(rèn)為兒子并未得到應(yīng)有的教育
and so they decided they would build a little center --
于是他們決定成立一個(gè)小型教育機(jī)構(gòu)
two classrooms that they started with a few other parents --
兩間教室里,他們開始和其他的父母
to educate kids with D.S.
一起教育唐氏綜合癥兒童
And over the years, that center grew into something called the Cooke Center,
多年后,該機(jī)構(gòu)發(fā)展為庫克中心
where there are now thousands upon thousands
現(xiàn)在有成千上萬的
of children with intellectual disabilities who are being taught.
智障兒童在這里接受教育
In the time since that Atlantic Monthly story ran,
自從大西洋月刊,刊載了那片文章以來
the life expectancy for people with Down syndrome has tripled.
唐氏綜合征患者的壽命,增加了兩倍
The experience of Down syndrome people includes those who are actors,
唐氏綜合征的人有些是演員
those who are writers, some who are able to live fully independently in adulthood.
作家,有些在成年后,能完全獨(dú)立生活
The Robards had a lot to do with that.
羅巴茲夫婦的貢獻(xiàn)很大
And I said, "Do you regret it?
我問他們:“你們會遺憾嗎?
Do you wish your child didn't have Down syndrome?
你們希望自己的孩子,沒有唐氏綜合征嗎?
Do you wish you'd never heard of it?"
是否希望從未聽說過這種病癥?"
And interestingly his father said,
有趣的是這位父親說,
"Well, for David, our son, I regret it,
"嗯,從我們的兒子大衛(wèi)角度來看,我感到遺憾,
because for David, it's a difficult way to be in the world,
因?yàn)閷τ诖笮l(wèi)來說,這個(gè)世界里唐氏患兒的路走得非常艱辛
and I'd like to give David an easier life.
我想要給大衛(wèi)更輕松的生活
But I think if we lost everyone with Down syndrome, it would be a catastrophic loss."
但我認(rèn)為,如果世界上不再有唐氏癥患兒,會是很大的損失。”
And Karen Robards said to me, "I'm with Tom.
凱倫羅巴茲說:“我同意湯姆的看法
For David, I would cure it in an instant to give him an easier life.
為了讓大衛(wèi)活得更自在,我會想瞬間治愈他的唐氏綜合癥
But speaking for myself -- well, I would never have believed 23 years ago when he was born
但對我來說, 23年前他剛出生時(shí),我絕不相信
that I could come to such a point --
我能走到今天這一步
speaking for myself, it's made me so much better and so much kinder
對我來說,他的病,讓我成為更好,更善良的人
and so much more purposeful in my whole life,
讓我的人生更有意義
that speaking for myself, I wouldn't give it up for anything in the world."
對我來說,這樣的經(jīng)驗(yàn),是世界上任何其他東西都換不來的"
We live at a point when social acceptance for these and many other conditions
現(xiàn)代社會對這樣那樣的病癥的接受程度
is on the up and up.
越來越高
And yet we also live at the moment
然而,此時(shí)此刻
when our ability to eliminate those conditions
我們治愈這些病癥的能力
has reached a height we never imagined before.
也已經(jīng)達(dá)到一個(gè)前所未有的高度
Most deaf infants born in the United States now
現(xiàn)在美國新生的耳聾嬰兒
will receive Cochlear implants,
都會接受人工耳蝸植入手術(shù),
which are put into the brain and connected to a receiver,
將人工耳蝸植入大腦,并連上接收器
and which allow them to acquire a facsimile of hearing and to use oral speech.
通過接收信號,這讓他們具有聽說的能力
A compound that has been tested in mice, BMN-111,
有一種叫 BMN-111的化合物,經(jīng)老鼠實(shí)驗(yàn)
is useful in preventing the action of the achondroplasia gene.
在抑制軟骨發(fā)育不全基因方面,非常有效
Achondroplasia is the most common form of dwarfism,
軟骨發(fā)育不全,是侏儒癥最常見的表現(xiàn)形式
and mice who have been given that substance and who have the achondroplasia gene,
有軟骨發(fā)育不全基因的小鼠,攝取BMN-11以后
grow to full size.
可以生長到正常體型
Testing in humans is around the corner.
臨床試驗(yàn)指日可待
There are blood tests which are making progress
通過血液檢測唐氏綜合癥的技術(shù)也在進(jìn)步
that would pick up Down syndrome more clearly and earlier in pregnancies than ever before,
可以在懷孕早期,更明確地檢測出唐氏綜合癥
making it easier and easier for people to eliminate those pregnancies,
使它更容易盡早終止
or to terminate them.
唐氏綜合癥胎兒妊娠
And so we have both social progress and medical progress.
我們的社會進(jìn)步了,醫(yī)學(xué)也發(fā)展了
And I believe in both of them.
我認(rèn)同這兩方面的進(jìn)步
I believe the social progress is fantastic and meaningful and wonderful,
我相信社會的進(jìn)步,精彩且有意義
and I think the same thing about the medical progress.
我認(rèn)為醫(yī)學(xué)的進(jìn)步,也是如此
But I think it's a tragedy when one of them doesn't see the other.
但我認(rèn)為兩者互不理解,著實(shí)可悲
And when I see the way they're intersecting
當(dāng)我看到他們交匯的方式
in conditions like the three I've just described,
像我剛才描述的三個(gè)病例
I sometimes think it's like those moments in grand opera
我有時(shí)覺得這就像,那些悲壯的歌劇
when the hero realizes he loves the heroine
當(dāng)英雄意識到,他愛上女主角的時(shí)候
at the exact moment that she lies expiring on a divan.
就是女主角躺在長沙發(fā)上,奄奄一息
We have to think about how we feel about cures altogether.
我們要全盤考量對于治愈的態(tài)度