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

譯者: Helen Chang 審譯者: S Sung

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

有一則古老的寓言「塞翁失馬」， 講的是一個農夫失掉一匹馬。

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

他的鄰居說：「唉，太糟了。」

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

農夫說：「是好是壞很難講。」

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

幾天後，那匹馬帶回七匹野馬。

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

鄰居又說了：「啊，太好了。」

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

農夫只是聳聳肩， 說：「好壞很難說。」

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

過了一天，農夫的兒子 騎乘其中的一匹野馬，

is thrown off and breaks his leg.

摔了下來，斷了一條腿。

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

鄰居說：「啊，運氣真差。」

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

農夫說：「好壞難講。」

Eventually, officers come knocking on people's doors,

後來軍官敲家家戶戶的門，

looking for men to draft for an army,

要拉夫從軍；

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

看到農夫的兒子腿斷了， 就放過了他。

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

鄰居說：「哦，運氣真好！」

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

農夫說：「好或壞，很難說。」

I first heard this story 20 years ago,

二十年前我第一次聽到這個故事，

and I have since applied it 100 times.

從那時起，用了一百次。

Didn't get the job I wanted:

沒有得到我想要的工作：

good or bad, hard to say.

好壞很難說。

Got the job I wanted:

得到我想要的工作：

good or bad, hard to say.

好壞很難說。

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

對我而言，這故事無關樂觀看待，

or waiting to see how things turn out.

也不是等著情況好轉；

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

而是不論我們有多麼迫切 想要把情況貼個標籤，

to put concrete around it by judging it.

想要蓋棺論定，

But reality is much more fluid,

實情卻是不定型的，

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

我們說的好或壞常常是片面的。

The parable has been my warning

這寓言一直讓我自我警惕，

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

緊抓著是好事或是壞事不放，

I close down my ability to truly see a situation.

使我關上了能夠看見實情的那扇門。

I learn more when I proceed and loosen my grip

如果鬆開手，我會學到更多，

and proceed openly with curiosity and wonder.

能以開放和好奇的心態前進。

But seven years ago,

但是七年前，

when I was pregnant with my first child,

我懷著頭一胎，

I completely forgot this lesson.

完全忘了這一課。

I believed I knew wholeheartedly what was good.

我以為自己全然了解什麼是好的。

When it came to having kids,

想到養育小孩，

I thought that good was some version of a superbaby,

我認為：好就是有超棒的孩子，

some ultrahealthy human who possessed not a single flaw

特別健康，沒有一點缺陷，

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

就像以後會披著超人的披肩飛向未來。

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

懷孕時我服用 DHA 藥丸

以確保嬰兒以後的頭腦會超級聰明；

supersmart brain,

and I ate mostly organic food,

我多半食用有機食品，

and I trained for a medication-free labor,

訓練自己生產時不用藥，

and I did many other things

還做了其他很多事，

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

因為我以為這樣做 不只能讓我生個好嬰兒，

but the best baby possible.

而且是最棒的嬰兒。

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

我的女兒菲右娜出生時 重 4 磅 12 盎司，

or 2.15 kilograms.

也就是 2.15 公斤。

The pediatrician said there were only two possible explanations

小兒科醫生說只有兩種可能性

for her tiny size.

可以解釋她的個兒為何這麼嬌小。

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

他說：「要麼是種不好，

"or it's bad soil."

要麼是土不好。」

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

我沒精疲力盡到聽不出他的邏輯：

my newborn, according to the doctor,

醫生認為我的新生兒是窳劣的。

was a bad plant.

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

後來我得知女兒有 極為罕見的染色體狀況，

called Wolf-Hirschhorn syndrome.

叫做「沃夫-賀許宏氏症候群」。

She was missing a chunk of her fourth chromosome.

她的第四組染色體少了一段。

And although my daughter was good --

儘管我的女兒好好的，

she was alive,

她活著，

and she had brand new baby skin

她有新生嬰兒的肌膚

and the most aware onyx eyes --

和最清澈的瑪瑙色眼珠。

I also learned that people with her syndrome

我也得知像她這種症狀的人，

have significant developmental delays and disabilities.

發育會顯著遲緩和有障礙。

Some never learn to walk or talk.

有些永遠學不會走路或說話。

I did not have the equanimity of the farmer.

我不像農夫那樣平靜。

The situation looked unequivocally bad to me.

在我看來，情況毫不含糊的糟糕。

But here's where the parable is so useful,

但是寓言正在這裡派上用場，

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

因為在診斷後的幾週，

我深陷絕望，

locked in the story that all of this was tragic.

全然困在悲慘的故事裡。

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

幸好現實不是定型的，

and it has much more to teach.

有很多事要我學習。

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

我開始慢慢認識這個神秘的孩子，

my fixed, tight story of tragedy loosened.

我那定型、緊繃的悲劇故事鬆開了。

It turned out my girl loved reggae,

原來我的女兒喜歡雷鬼音樂，

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

我的丈夫隨著音樂旋律 上下輕搖她小小的身體時，

to the rhythm.

她會傻笑。

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

她的琥珀色眼珠後來變成 像太浩湖那樣令人驚艷的藍，

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

她喜歡定睛看著別人的雙眼。

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

雖然五個月大時 她不能像別的嬰兒那樣抬著頭，

but she could hold this deep, intent eye contact.

但她能專注盯著看。

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

一個朋友說：「她是我見過 最察覺的嬰兒。」

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

雖然我看到的是 她平靜、專注存在的稟賦，

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

但是來我家替菲右娜復健的職業治療師

saw a child who was neurologically dull.

看到的卻是一個神經遲緩的孩子，

This therapist was especially disappointed

這個治療師對於菲右娜 那時還沒辦法翻身尤其失望，

that Fiona wasn't rolling over yet,

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

因此她說我們必須要喚醒她的神經。

One day she leaned over my daughter's body,

有天她俯在我女兒的身上，

took her tiny shoulders,

抓住她小小的肩膀，

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

推擠著她，說：「醒過來！醒過來！」

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

頭一年有幾個治療師來我們家，

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

通常他們著重在他們認為 我孩子不好的地方。

I was really happy when Fiona started using her right hand

當菲右娜開始用她的右手時 我非常的高興，

to bully a dangling stuffed sheep,

她用手欺負一個懸掛的綿羊，

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

但是治療師卻緊盯著她的左手。

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

菲右娜傾向於少用左手，

and she would cross the fingers on that hand.

交叉著左手的手指。

So the therapist said we should devise a splint,

因此治療師認為需要設計一個夾板，

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

致使我的孩子根本不能 使用那些手指頭，

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

僅為把那些手指頭 扳到看起來正常的位置。

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

第一年，我開始認知了幾件事。

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

第一：古老的寓言先擺一邊， 我孩子有幾個差勁的治療師。

(Laughter)

（笑聲）

Two: I had a choice.

第二：我有選擇。

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

就像被供給紅藥丸或藍藥丸來服用，

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

我能選擇視女兒的不同為不好，

I could strive toward the goal that her therapists called,

能選擇努力去實現 她的治療師聲稱的目標：

"You'd never know."

「妳永遠不會知道。」

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

他們認可自己對孩子的評論：

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

「你永遠不會知道他是 『遲緩』、『自閉』或是『不同』。」

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

我能選擇認可

盡量消弭差異是好的方式；

as many differences as possible.

Of course, this would have been a disastrous pursuit,

當然那會導致慘痛的結果，

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

因為我女兒的細胞 有罕見的基因藍圖。

She wasn't designed to be like other people.

她被設計成異於常人。

She would lead a rare life.

她將會過著罕見的生活。

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

因此，我有另一個選擇：

我能捨棄神經異常、

that neurological differences and developmental delays and disabilities

發展遲緩、殘障是不好的這種認知；

were bad,

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

也就是棄捨原先認為

擁有健全身體的生命 就比較好的這個想法。

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

我可以放掉決定生命 是好是壞的文化偏見，

and simply watch my daughter's life as it unfolded

而只專注在我女兒正展開

with openness and curiosity.

開放和好奇的生命。

One afternoon she was lying on her back,

有一天下午，她背躺著，

and she arched her back on the carpet

她在地毯上弓起了背，

stuck her tongue out of the side of her mouth

舌頭伸出嘴側，

and managed to torque her body onto her belly.

扭轉成腹部著地趴著的姿勢。

Then she tipped over and rolled back onto her back,

然後她又轉成背躺著，

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

躺好後，她又做了一次，

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

在咖啡桌下滾動和擺動 她 12 磅重的身軀。

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

起初，我以為她被困住了，

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

但後來我看到她伸手去拿 她的眼睛一直盯著的東西：

a black electric cord.

一條黑色的電源線。

She was a year old.

當時她一歲。

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

同齡的其他嬰兒肯定能 自己站起來、蹣跚前進，

some of them.

有些能夠。

To some, my kid's situation looked bad:

有些人認為我孩子的情況很糟糕，

a one-year-old who could only roll.

已經一歲了，只會翻身而已。

But screw that.

但是，管他的。

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

我的孩子正在享受新的、 肢體靈活的自由。

I rejoiced.

我歡欣。

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

然而那天下午我看到的 是個拉扯電線的嬰兒，

so you know,

想當然爾，

good or bad, hard to say.

是好或是壞，很難說。

(Laughter)

（笑聲）

I started seeing that when I released my grip

我開始看到，當我鬆開了手，

about what made a life good or bad,

不再執著於生命怎麼樣是好、是壞，

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

我看見、了解女兒正在展開生命：

It was beautiful,

美麗、

it was complicated,

複雜、

joyful, hard --

歡欣、

困難。

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

換言之，就是人類經驗的另一種表達。

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

後來我們搬到美國的另一州，

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

很幸運有了另一批嶄新的治療師。

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

他們不再注重於我孩子不對勁的地方。

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

他們不把她的異常 視為應該修理的問題。

They acknowledged her limitations,

他們承認她的侷限，

but they also saw her strengths,

也看到她的強項，

and they celebrated her for who she was.

他們表揚原本的她。

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

他們的目標並不是 使菲右娜變得更正常，

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

而是盡可能使她更獨立，

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

使她能夠落實她的潛能， 不論什麼樣的潛能。

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

但是一般文化並沒有 這種對殘疾的開放態度。

We call congenital differences "birth defects,"

我們把先天性的差異稱為 「先天的缺陷」，

as though human beings were objects on a factory line.

彷彿人類是工廠生產線上的物品。

We might offer pitying expressions

當我們聽說有個同事 生了個唐氏症的嬰兒，

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

我們或許會表示同情。

We hail a blockbuster film about a suicidal wheelchair user,

我們吹捧關於坐輪椅的 自殺者的商業大片，

despite the fact that actual wheelchair users tell us

儘管真實坐輪椅的人告訴我們

that stereotype is unfair and damaging.

刻板的印象不公平且有害。

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

有時我們的醫療機構 決定什麼生命值不值得活。

Such is the case with Amelia Rivera,

就像艾米莉雅 · 里維拉的例子，

a girl with my daughter's same syndrome.

她和我的女兒有同樣的症狀。

In 2012, a famous American children's hospital

起初一所美國兒童醫院在 2012 年

initially denied Amelia the right to a lifesaving kidney transplant

拒絕為艾米莉雅移植救命的腎臟，

because, according to their form,

因為根據他們的病歷，

as it said, she was "mentally retarded."

她是「智障」。

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

這是文化對身心障礙者的 故事的糟糕體現。

in a culture.

But there's a surprisingly insidious counterstory --

令人驚訝的是也有陰險的反面說法，

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

尤其是美好的心智障礙者的故事，

because they are here to teach us something magical,

像是：他們來到世間是為了 要教我們一些神奇的東西，

or they are inherently angelic and always sweet.

或者他們天生像天使，總是很甜美。

You have heard this ableist trope before:

你以前聽過這健全主義者的比喻：

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

唐氏症的男童是神特別的孩子，

or the girl with the walker and the communication device

或說使用助行器和通信器材的女孩

who is a precious little angel.

是珍貴的小天使。

This story rears its head in my daughter's life

大約聖誕節前後，這個故事 又在我女兒的生命中出現，

around Christmastime,

when certain people get positively giddy

有些人想像

看到她在盛會中頭戴光環、 身背天使的翅膀就會頭暈。

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

at the pageant.

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

暗示的是

他們未曾經歷過

或粘黏上人類的複雜。

of being human.

And although at times, especially as a baby,

儘管有時候，尤其在她嬰兒時期，

my daughter has, in fact, looked angelic,

我的女兒的確看起來像個天使；

she has grown into the type of kid

但她已長成像其他調皮搗蛋的孩子那樣，

who does the rascally things that any other kid does,

做淘氣的事，

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

像是她六歲時猛推兩歲的妹妹。

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

我女兒有權讓你惱怒，

like any other kid.

就像其他的孩子一樣。

When we label a person tragic or angelic,

當我們把人貼標為可憐或可愛，

bad or good,

壞或好，

we rob them of their humanity,

我們就剝奪了他們的人性，

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

剝奪的不只是連同標籤的雜亂、複雜，

but the rights and dignities as well.

還有權利和尊嚴。

My girl does not exist to teach me things

我的女兒不是生來教我，

or any of us things,

也不是來教其他任何人功課，

but she has indeed taught me:

但她的確教了我：

number one, how many mozzarella cheese sticks

第一，一個 22 磅的人

一天能吃掉多少根莫扎里拉起司棒。

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

which is five, for the record;

答案是五根。

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

第二，她讓我得以懷疑我的文化信仰，

about what makes a life good

什麼使生命美好，

and what makes life bad.

什麼使生命不好。

If you had told me six years ago

如果六年前你告訴我

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

我的女兒有時會用 iPad app 來溝通，

I might have thought that was sad.

我可能會認為那很可悲。

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

但現在回想我給菲右娜 iPad 的頭一天，

loaded with a thousand words,

iPad 裡面放了一千個字，

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

每個字用一個小小的圖標或方塊代表。

And I recall how bold and hopeful it felt,

我猶記得當時覺得膽壯和有希望，

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

即使某些治療師認為我過於樂觀，

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

即使那些是微小的目標，她也達不到。

And I recall watching in awe as she gradually learned

我回想讚嘆地看著她

to flex her little thumb

慢慢地學會彎曲她的小拇指，

and hit the buttons to say words she loved,

碰觸那個說出她喜愛字彙的按鈕，

like "reggae" and "cheese"

像是「雷鬼」、「乳酪」，

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

以及其餘幾百個她喜愛， 但是仍然有口難言的字彙。

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

我們也得教她 不那麼有趣的字彙和介系詞，

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

像是 "of"、"on" 和 "in"。

And we worked on this for a few weeks.

我們練習了幾個星期，

And then I recall sitting at a dining room table

然後我記得坐在餐桌旁，

with many relatives,

有許多親戚在座，

and, apropos of absolutely nothing,

毫無疑問地，

Fiona used her iPad app to say,

菲右娜用她的 iPad app 說出了：

"poop in toilet."

「馬桶裡有大便。」

(Laughter)

（笑聲）

Good or bad, hard to say.

好或壞，很難講。

(Laughter)

（笑聲）

My kid is human, that's all.

我的孩子是人，僅僅如此。

And that is a lot.

那就夠了。

Thank you.

謝謝。

(Applause)

（掌聲）