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

翻译人员: lin yifan 校对人员: cleri liu

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

有一则古老的寓言故事，塞翁失马。

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

塞翁的邻居听闻此事， 说“这太糟糕了。”

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

塞翁说：“好坏还不一定呢。”

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

过了几天，丢失的马回来了， 后面还跟着七匹野马。

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

邻居说：“真是喜事。”

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

塞翁怂了怂肩膀又说：“好坏难说。”

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

第二天，塞翁的儿子骑了一匹马，

is thrown off and breaks his leg.

摔断了他的腿。

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

邻居又说：“这真的是太糟糕了。”

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

塞翁还是说：“也不一定。”

Eventually, officers come knocking on people's doors,

最终，官员挨家挨户敲门，

looking for men to draft for an army,

抓人从军。

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

他们看到塞翁的儿子 断了腿，就没抓他。

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

邻居说：“真是万幸。”

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

塞翁依旧说：“难说啊。”

I first heard this story 20 years ago,

我第一次听到这个故事是在 20 年前。

and I have since applied it 100 times.

在那之后，我就实践了 100 来遍。

Didn't get the job I wanted:

没拿到我想要的工作，

good or bad, hard to say.

也不一定是件坏事。

Got the job I wanted:

拿到了我想要的工作，

good or bad, hard to say.

也未必是一件好事。

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

对我来说，这个故事 不是说要看好的一面，

or waiting to see how things turn out.

也不是等事情出现转机，

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

而是说我们一直急于 对一个事情下结论，

to put concrete around it by judging it.

用现有的条件来对它评判。

But reality is much more fluid,

但事实总是飘忽不定的。

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

好坏总是在事情定下之前， 我们自己灌输给自己的。

The parable has been my warning

这则寓言是我的警示，

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

让我从只看事情好坏中脱离出来，

I close down my ability to truly see a situation.

更加注意事情的真相。

I learn more when I proceed and loosen my grip

我学会了掌握尺度，

and proceed openly with curiosity and wonder.

以及广泛运用好奇心和求知欲。

But seven years ago,

但七年前，

when I was pregnant with my first child,

我怀了第一个孩子。

I completely forgot this lesson.

我完完全全忘记了这个寓言。

I believed I knew wholeheartedly what was good.

我认为我自己知道什么是好的。

When it came to having kids,

当我有了孩子，

I thought that good was some version of a superbaby,

我对“好”的定义就是“超级宝宝”，

some ultrahealthy human who possessed not a single flaw

非常健康的人会生出完美的宝宝，

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

并且会披着披风飞向 成为超级英雄的未来。

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

我吃着 DHA 药片确保我的孩子 有着很强的执行能力，

supersmart brain,

有着非常聪明的大脑，

and I ate mostly organic food,

我基本上顿顿吃的都是有机食物，

and I trained for a medication-free labor,

我基本告别药物，

and I did many other things

还做了很多其他的努力，

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

因为我以为这些事情能够 不仅仅让我有个好的宝宝，

but the best baby possible.

还能给我一个最好的宝宝。

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

当我的女儿 Fiona 出生的时候， 她只有 4 磅 12 盎司重，

or 2.15 kilograms.

也就是，2.15 公斤。

The pediatrician said there were only two possible explanations

儿科医生告诉我， 只有两个答案能解释

for her tiny size.

她过轻的体重。

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

他说：“要不然就是胚胎本身不好。”

"or it's bad soil."

“要么就是营养不好。”

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

我还在努力理清医生的逻辑线，

my newborn, according to the doctor,

我的孩子，据医生所说，

was a bad plant.

是不健康的。

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

最终，我得知我的女儿患有 一种极其罕见的染色体病症，

called Wolf-Hirschhorn syndrome.

叫做四号染色体损缺综合症。

She was missing a chunk of her fourth chromosome.

她缺失了四号染色体的一个部分。

And although my daughter was good --

即便我的女儿很好——

she was alive,

她仍然存活了下来，

and she had brand new baby skin

有着新生婴儿的嫩滑肌肤，

and the most aware onyx eyes --

还有着玛瑙般的眼睛——

I also learned that people with her syndrome

我研究了其他和她 有着相同症状的人群，

have significant developmental delays and disabilities.

他们患有发育不良 和残疾的几率非常高，

Some never learn to walk or talk.

有些甚至不会走路和说话。

I did not have the equanimity of the farmer.

我无法像塞翁一样保持平静，

The situation looked unequivocally bad to me.

女儿的情况对我来说实在是太糟了。

But here's where the parable is so useful,

但，这也是那则寓言显灵的时候。

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

她的诊断出来后的那几周， 我被绝望笼罩着。

locked in the story that all of this was tragic.

坚信着这终将是一个悲剧。

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

但事实，总是阴晴不定的。

and it has much more to teach.

事实也蕴含着很多道理。

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

当我开始试了解我这个孩子，

my fixed, tight story of tragedy loosened.

这场悲剧就开始出现了转机，

It turned out my girl loved reggae,

我发现，我的女儿喜欢雷鬼音乐，

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

在我丈夫伴着旋律， 把她小小的身子来回摇晃的时候，

to the rhythm.

她会傻傻的咯咯直笑。

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

她玛瑙般的眼睛也变成了 最闪亮的湖蓝色，

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

她也很喜欢盯着别人的眼睛。

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

在五个月大的时候，她不能 像别的宝宝一样把头抬起来，

but she could hold this deep, intent eye contact.

但是她会用她的眼睛进行交流。

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

一个朋友告诉我：“她是我见过 的最有意识的宝宝。”

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

然而，虽然我眼中的孩子冷静，专注，

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

一位来我家照看 Fiona 的职业理疗师

saw a child who was neurologically dull.

看到的却是一个神经迟缓的孩子。

This therapist was especially disappointed

这个理疗师对一件事情极其不满，

that Fiona wasn't rolling over yet,

那就是 Fiona 现在还不能滚动。

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

所以她告诉我说，我们需要 去让她的神经醒过来。

One day she leaned over my daughter's body,

有一天，理疗师弯下身子，

took her tiny shoulders,

抓住了她瘦小的肩膀，

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

推着她说：“醒一醒！醒一醒！”

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

我们第一年找过几个理疗师，

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

他们通常关注他们认为 我的孩子不好的地方。

I was really happy when Fiona started using her right hand

在 Fiona 第一次开始学会用右手，

to bully a dangling stuffed sheep,

去打她的悬挂绵羊玩具 的时候，我很高兴，

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

但理疗师却纠结于她的左手。

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

Fiona 不怎么用她的左手，

and she would cross the fingers on that hand.

那只手的手指也经常交叉在一起。

So the therapist said we should devise a splint,

所以理疗师说：“我们应该用个夹板。”

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

夹板会让 Fiona 不能运用她的手指，

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

但至少可以让这些手指 看上去是在正常的位置。

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

在第一年，我开始注意到几件事情。

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

一： 把寓言故事放一边，我孩子 碰到了几个坏的理疗师。

(Laughter)

（笑声）

Two: I had a choice.

二： 我有选择权。

就像是一个人被要求 选择吃红蓝药丸的其中一个，

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

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

我可以把我女儿的不同视作一件坏事，

I could strive toward the goal that her therapists called,

也可以把这不同视作是一种目标，

"You'd never know."

“谁知道呢？”

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

当理疗师谈论到孩子的时候， 他们乐于把自己置身之外，

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

“你不知道他究竟是‘迟钝’， ‘自闭症’还是‘不同’。”

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

我会相信我女儿良好 的人生之路一定是那种

as many differences as possible.

尽可能抹去和正常人 一切差异的道路。

Of course, this would have been a disastrous pursuit,

当然，这将是一场困难重重的追求，

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

因为，从细胞水平开始， 我的女儿就已经与别人不同了。

She wasn't designed to be like other people.

她生来就不是为了和别人一样的，

She would lead a rare life.

她会有一个离奇的人生。

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

所以，我的另一个选择就是， 我可以把我的故事，

that neurological differences and developmental delays and disabilities

把这个神经系统不同 和发展迟缓以及残疾的

were bad,

坏故事，

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

变成一个可以消除我 对生活好坏评判的偏见，

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

简单的把我女儿的人生

and simply watch my daughter's life as it unfolded

看作是一个展开的，

with openness and curiosity.

敞亮又奇幻的人生。

One afternoon she was lying on her back,

一天下午，她躺在毯子上，

and she arched her back on the carpet

拱起后背，

stuck her tongue out of the side of her mouth

把舌头伸到了嘴外，

and managed to torque her body onto her belly.

试图把身子扭到肚子上。

Then she tipped over and rolled back onto her back,

她翻了个身又翻了回去，

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

之后又打算再翻一次，

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

她就在咖啡桌下面 来回翻滚着她 12 磅的身子。

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

一开始，我以为她会卡在那里，

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

但后来我看到了她眼睛 一直盯着的东西，

a black electric cord.

一根黑色电线。

She was a year old.

她只有一岁。

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

有些其他同岁的孩子 一定已经能够站起来，

some of them.

摇摇晃晃的走走。

To some, my kid's situation looked bad:

对于很多人来说，我的孩子情况不妙：

a one-year-old who could only roll.

一岁了还只能滚来滚去。

But screw that.

才不是呢。

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

我的孩子，有着柔软的灵活度。

I rejoiced.

我很高兴。

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

那天下午我就一直在 看一个婴儿拉扯着电线，

so you know,

这件事情，

good or bad, hard to say.

好坏难说。

(Laughter)

（笑声）

I started seeing that when I released my grip

我开始发觉，当我放开了

about what made a life good or bad,

我对人生好坏的局限时，

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

我能够看到，我女儿人生的样子。

It was beautiful,

那是美丽的，

it was complicated,

复杂的，

joyful, hard --

愉悦且困难的。

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

换句话来说： 是人生经历的另一种体验。

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

最终，我一家人搬到了另一个州，

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

换了新的一批理疗师。

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

他们不再纠结我孩子的不足之处。

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

他们也不把她的不同 当作是问题去解决。

They acknowledged her limitations,

他们看到了她的短处，

but they also saw her strengths,

但也看到了她的长处，

and they celebrated her for who she was.

并且他们鼓励孩子做自己。

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

他们的目标并不是 让 Fiona 看上去像个正常人；

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

他们的目标是让她尽可能的独立，

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

这样她就可以发挥 她自己独特的潜能。

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

但大环境对残疾人 并不抱有这样开放的态度。

We call congenital differences "birth defects,"

我们把先天性差异叫做“出生缺陷”，

as though human beings were objects on a factory line.

就像把人类当作是生产线上的产品。

We might offer pitying expressions

当我们知道了同事的孩子

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

患有唐氏综合征， 可能会表达同情之心。

We hail a blockbuster film about a suicidal wheelchair user,

我们对一部关于坐轮椅的人 自杀电影喝彩的时候，

despite the fact that actual wheelchair users tell us

忘却了现实中坐轮椅的人告诉我们的，

that stereotype is unfair and damaging.

刻板印象是不公且具有伤害性的。

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

有些时候，我们的医疗机构 决定了我们的生死。

Such is the case with Amelia Rivera,

Amelia Rivera 就是一个例子。

a girl with my daughter's same syndrome.

她和我的女儿有着同样的综合症。

In 2012, a famous American children's hospital

2012 年， 一个著名的美国儿童医院，

initially denied Amelia the right to a lifesaving kidney transplant

剥夺了 Ameila 移植肾脏的权利。

because, according to their form,

因为，根据他们的定义，

as it said, she was "mentally retarded."

她“智力迟钝”。

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

这就是有关残疾和表现力低下的故事，

in a culture.

在文化中的体现。

But there's a surprisingly insidious counterstory --

但也有个潜在的相反例子。

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

在这个故事中， 有智力缺陷的人都是好的，

because they are here to teach us something magical,

因为他们能够教我们 一些不同寻常的事物，

or they are inherently angelic and always sweet.

他们也生来如天使一般亲切。

You have heard this ableist trope before:

你们以前一定听过残疾歧视的比喻：

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

有着唐氏综合征的男孩儿 是上帝选中的特殊孩子。

or the girl with the walker and the communication device

又或是，带着拐杖 和交流设备的女孩儿，

who is a precious little angel.

是一个小天使。

This story rears its head in my daughter's life

这些事情在我女儿的生活中也存在着，

around Christmastime,

圣诞节那会儿，

when certain people get positively giddy

有些人一想到要在盛会上 见到她天使的装束

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

——翅膀和光环，

at the pageant.

就会感到很兴奋。

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

这影射出人们没有经历过生而为人

of being human.

棘手的复杂性。

And although at times, especially as a baby,

尽管大多数时候，特别是婴儿时期，

my daughter has, in fact, looked angelic,

说真的，那时我的女儿 看起来就是个天使，

she has grown into the type of kid

但是渐渐的，她也开始

who does the rascally things that any other kid does,

跟其他孩子一样耍无赖撒泼。

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

比如在她四岁的那年， 推倒了她两岁的妹妹。

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

我的女儿同样拥有厌烦你们的权利，

like any other kid.

就像其他孩子一样。

When we label a person tragic or angelic,

当我们给一个人贴上不幸的 或是天使般，好的或坏的

bad or good,

这样的标签时，

we rob them of their humanity,

我们夺走了他们的人性，

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

随之而去的不仅仅是“人”的头衔 所带来的复杂性，

but the rights and dignities as well.

更是他们的权利和尊严。

My girl does not exist to teach me things

我女儿的存在不是要 教会我，或者我们中

or any of us things,

的任何一个人什么事情，

but she has indeed taught me:

但是她确实让我知道：

number one, how many mozzarella cheese sticks

第一，一个 22 磅的人 一天可以吃掉多少

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

马苏里拉奶酪棒——

which is five, for the record;

记录显示是五个。

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

第二，质询我的民族文化中关于

about what makes a life good

什么使生活变好

and what makes life bad.

以及什么使生活变糟的天赋。

If you had told me six years ago

如果你六年前告诉我

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

我的女儿有时会 用 iPad 应用软件沟通，

I might have thought that was sad.

我一定会觉得那很悲哀。

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

但是现在，我回忆起我把 Fiona 的 iPad 交给她的第一天，

loaded with a thousand words,

在那个 iPad 应用上有一千个单词，

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

每个都被一个小图标 或是小方块代表着。

And I recall how bold and hopeful it felt,

我还想我当时的感受 是多么自豪和充满希望，

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

甚至女儿的几位理疗师 都认为我的期望太高了，

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

他们觉得她永远不能点中 这些小目标。

And I recall watching in awe as she gradually learned

我仍然记得看着她 带着惊奇慢慢的学会

to flex her little thumb

灵活的使用她小小的拇指，

and hit the buttons to say words she loved,

按下按钮说出她爱的单词，

like "reggae" and "cheese"

比如“雷鬼”和“奶酪”，

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

还有一百多个她很喜欢 但是暂时说不出的单词。

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

接着我们得教她 不那么有趣的词，比如说介词——

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

像 “of”，"on" 和 “in”。

And we worked on this for a few weeks.

我们在这上面花了好几个礼拜。

And then I recall sitting at a dining room table

我还记得我们和一群亲戚

with many relatives,

围坐在餐桌旁，

and, apropos of absolutely nothing,

出人意料的，

Fiona used her iPad app to say,

Fiona 用她的 iPad 应用说，

"poop in toilet."

“在马桶里拉屎。”

(Laughter)

（笑声）

Good or bad, hard to say.

好坏难说。

(Laughter)

（笑声）

My kid is human, that's all.

我的孩子就是一个普通的人，

And that is a lot.

这一点意义非凡。

Thank you.

谢谢。

(Applause)

（掌声）