There's an ancient parable about a farmer who lost his horse. And neighbors came over to say, "Oh, that's too bad." And the farmer said, "Good or bad, hard to say." Days later, the horse returns and brings with it seven wild horses. And neighbors come over to say, "Oh, that's so good!" And the farmer just shrugs and says, "Good or bad, hard to say." The next day, the farmer's son rides one of the wild horses, is thrown off and breaks his leg. And the neighbors say, "Oh, that's terrible luck." And the farmer says, "Good or bad, hard to say." Eventually, officers come knocking on people's doors, looking for men to draft for an army, and they see the farmer's son and his leg and they pass him by. And neighbors say, "Ooh, that's great luck!" And the farmer says, "Good or bad, hard to say."
有一則古老的寓言「塞翁失馬」, 講的是一個農夫失掉一匹馬。 他的鄰居說:「唉,太糟了。」 農夫說:「是好是壞很難講。」 幾天後,那匹馬帶回七匹野馬。 鄰居又說了:「啊,太好了。」 農夫只是聳聳肩, 說:「好壞很難說。」 過了一天,農夫的兒子 騎乘其中的一匹野馬, 摔了下來,斷了一條腿。 鄰居說:「啊,運氣真差。」 農夫說:「好壞難講。」 後來軍官敲家家戶戶的門, 要拉夫從軍; 看到農夫的兒子腿斷了, 就放過了他。 鄰居說:「哦,運氣真好!」 農夫說:「好或壞,很難說。」
I first heard this story 20 years ago, and I have since applied it 100 times. Didn't get the job I wanted: good or bad, hard to say. Got the job I wanted: good or bad, hard to say. To me, the story is not about looking on the bright side or waiting to see how things turn out. It's about how eager we can be to label a situation, to put concrete around it by judging it. But reality is much more fluid, and good and bad are often incomplete stories that we tell ourselves. The parable has been my warning that by gripping tightly to the story of good or bad, I close down my ability to truly see a situation. I learn more when I proceed and loosen my grip and proceed openly with curiosity and wonder.
二十年前我第一次聽到這個故事, 從那時起,用了一百次。 沒有得到我想要的工作: 好壞很難說。 得到我想要的工作: 好壞很難說。 對我而言,這故事無關樂觀看待, 也不是等著情況好轉; 而是不論我們有多麼迫切 想要把情況貼個標籤, 想要蓋棺論定, 實情卻是不定型的, 我們說的好或壞常常是片面的。 這寓言一直讓我自我警惕, 緊抓著是好事或是壞事不放, 使我關上了能夠看見實情的那扇門。 如果鬆開手,我會學到更多, 能以開放和好奇的心態前進。
But seven years ago, when I was pregnant with my first child, I completely forgot this lesson. I believed I knew wholeheartedly what was good. When it came to having kids, I thought that good was some version of a superbaby, some ultrahealthy human who possessed not a single flaw and would practically wear a cape flying into her superhero future. I took DHA pills to ensure that my baby had a super-high-functioning, supersmart brain, and I ate mostly organic food, and I trained for a medication-free labor, and I did many other things because I thought these things would help me make not just a good baby, but the best baby possible.
但是七年前, 我懷著頭一胎, 完全忘了這一課。 我以為自己全然了解什麼是好的。 想到養育小孩, 我認為:好就是有超棒的孩子, 特別健康,沒有一點缺陷, 就像以後會披著超人的披肩飛向未來。 懷孕時我服用 DHA 藥丸 以確保嬰兒以後的頭腦會超級聰明; 我多半食用有機食品, 訓練自己生產時不用藥, 還做了其他很多事, 因為我以為這樣做 不只能讓我生個好嬰兒, 而且是最棒的嬰兒。
When my daughter Fiona was born, she weighed 4 pounds, 12 ounces, or 2.15 kilograms. The pediatrician said there were only two possible explanations for her tiny size. "Either," he said, "it's bad seed," "or it's bad soil." And I wasn't so tired from labor to lose the thread of his logic: my newborn, according to the doctor, was a bad plant. Eventually, I learned that my daughter had an ultra-rare chromosomal condition called Wolf-Hirschhorn syndrome. She was missing a chunk of her fourth chromosome. And although my daughter was good -- she was alive, and she had brand new baby skin and the most aware onyx eyes -- I also learned that people with her syndrome have significant developmental delays and disabilities. Some never learn to walk or talk.
我的女兒菲右娜出生時 重 4 磅 12 盎司, 也就是 2.15 公斤。 小兒科醫生說只有兩種可能性 可以解釋她的個兒為何這麼嬌小。 他說:「要麼是種不好, 要麼是土不好。」 我沒精疲力盡到聽不出他的邏輯: 醫生認為我的新生兒是窳劣的。 後來我得知女兒有 極為罕見的染色體狀況, 叫做「沃夫-賀許宏氏症候群」。 她的第四組染色體少了一段。 儘管我的女兒好好的, 她活著, 她有新生嬰兒的肌膚 和最清澈的瑪瑙色眼珠。 我也得知像她這種症狀的人, 發育會顯著遲緩和有障礙。 有些永遠學不會走路或說話。
I did not have the equanimity of the farmer. The situation looked unequivocally bad to me. But here's where the parable is so useful, because for weeks after her diagnosis, I felt gripped by despair, locked in the story that all of this was tragic. Reality, though -- thankfully -- is much more fluid, and it has much more to teach. As I started to get to know this mysterious person who was my kid, my fixed, tight story of tragedy loosened. It turned out my girl loved reggae, and she would smirk when my husband would bounce her tiny body up and down to the rhythm. Her onyx eyes eventually turned the most stunning Lake Tahoe blue, and she loved using them to gaze intently into other people's eyes. At five months old, she could not hold her head up like other babies, but she could hold this deep, intent eye contact. One friend said, "She's the most aware baby I've ever seen."
我不像農夫那樣平靜。 在我看來,情況毫不含糊的糟糕。 但是寓言正在這裡派上用場, 因為在診斷後的幾週, 我深陷絕望, 全然困在悲慘的故事裡。 幸好現實不是定型的, 有很多事要我學習。 我開始慢慢認識這個神秘的孩子, 我那定型、緊繃的悲劇故事鬆開了。 原來我的女兒喜歡雷鬼音樂, 我的丈夫隨著音樂旋律 上下輕搖她小小的身體時, 她會傻笑。 她的琥珀色眼珠後來變成 像太浩湖那樣令人驚艷的藍, 她喜歡定睛看著別人的雙眼。 雖然五個月大時 她不能像別的嬰兒那樣抬著頭, 但她能專注盯著看。 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, an occupational therapist who came over to our house to work with Fiona saw a child who was neurologically dull. This therapist was especially disappointed that Fiona wasn't rolling over yet, and so she told me we needed to wake her neurology up. One day she leaned over my daughter's body, took her tiny shoulders, jostled her and said, "Wake up! Wake up!" We had a few therapists visit our house that first year, and they usually focused on what they thought was bad about my kid. I was really happy when Fiona started using her right hand to bully a dangling stuffed sheep, but the therapist was fixated on my child's left hand. Fiona had a tendency not to use this hand very often, and she would cross the fingers on that hand. So the therapist said we should devise a splint, which would rob my kid of the ability to actually use those fingers, but it would at least force them into some position that looked normal.
雖然我看到的是 她平靜、專注存在的稟賦, 但是來我家替菲右娜復健的職業治療師 看到的卻是一個神經遲緩的孩子, 這個治療師對於菲右娜 那時還沒辦法翻身尤其失望, 因此她說我們必須要喚醒她的神經。 有天她俯在我女兒的身上, 抓住她小小的肩膀, 推擠著她,說:「醒過來!醒過來!」 頭一年有幾個治療師來我們家, 通常他們著重在他們認為 我孩子不好的地方。 當菲右娜開始用她的右手時 我非常的高興, 她用手欺負一個懸掛的綿羊, 但是治療師卻緊盯著她的左手。 菲右娜傾向於少用左手, 交叉著左手的手指。 因此治療師認為需要設計一個夾板, 致使我的孩子根本不能 使用那些手指頭, 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. One: ancient parables aside, my kid had some bad therapists.
第一年,我開始認知了幾件事。 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. Like a person offered to swallow a red pill or a blue pill, I could choose to see my daughter's differences as bad; I could strive toward the goal that her therapists called, "You'd never know." They loved to pat themselves on the back when they could say about a kid, "You'd never know he was 'delayed' or 'autistic' or 'different.'" I could believe that the good path was the path that erased as many differences as possible. Of course, this would have been a disastrous pursuit, because at the cellular level, my daughter had rare blueprints. She wasn't designed to be like other people. She would lead a rare life. So, I had another choice: I could drop my story that neurological differences and developmental delays and disabilities were bad, which means I could also drop my story that a more able-bodied life was better. I could release my cultural biases about what made a life good or bad and simply watch my daughter's life as it unfolded with openness and curiosity.
第二:我有選擇。 就像被供給紅藥丸或藍藥丸來服用, 我能選擇視女兒的不同為不好, 能選擇努力去實現 她的治療師聲稱的目標: 「妳永遠不會知道。」 他們認可自己對孩子的評論: 「你永遠不會知道他是 『遲緩』、『自閉』或是『不同』。」 我能選擇認可 盡量消弭差異是好的方式; 當然那會導致慘痛的結果, 因為我女兒的細胞 有罕見的基因藍圖。 她被設計成異於常人。 她將會過著罕見的生活。 因此,我有另一個選擇: 我能捨棄神經異常、 發展遲緩、殘障是不好的這種認知; 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。 我可以放掉決定生命 是好是壞的文化偏見, 而只專注在我女兒正展開 開放和好奇的生命。
One afternoon she was lying on her back, and she arched her back on the carpet stuck her tongue out of the side of her mouth and managed to torque her body onto her belly. Then she tipped over and rolled back onto her back, and once there, she managed to do it all over again, rolling and wiggling her 12-pound self under a coffee table. At first, I thought she'd gotten stuck there, but then I saw her reaching for something that her eye had been on all along: a black electric cord. She was a year old. Other babies her age were for sure pulling up to stand and toddling around, some of them. To some, my kid's situation looked bad: a one-year-old who could only roll. But screw that. My kid was enjoying the new, limber freedom of mobility. I rejoiced. Then again, what I watched that afternoon was a baby yanking on an electric cord, so you know, good or bad, hard to say.
有一天下午,她背躺著, 她在地毯上弓起了背, 舌頭伸出嘴側, 扭轉成腹部著地趴著的姿勢。 然後她又轉成背躺著, 躺好後,她又做了一次, 在咖啡桌下滾動和擺動 她 12 磅重的身軀。 起初,我以為她被困住了, 但後來我看到她伸手去拿 她的眼睛一直盯著的東西: 一條黑色的電源線。 當時她一歲。 同齡的其他嬰兒肯定能 自己站起來、蹣跚前進, 有些能夠。 有些人認為我孩子的情況很糟糕, 已經一歲了,只會翻身而已。 但是,管他的。 我的孩子正在享受新的、 肢體靈活的自由。 我歡欣。 然而那天下午我看到的 是個拉扯電線的嬰兒, 想當然爾, 是好或是壞,很難說。
(Laughter)
(笑聲)
I started seeing that when I released my grip about what made a life good or bad, I could watch my daughter's life unfold and see what it was. It was beautiful, it was complicated, joyful, hard -- in other words: just another expression of the human experience.
我開始看到,當我鬆開了手, 不再執著於生命怎麼樣是好、是壞, 我看見、了解女兒正在展開生命: 美麗、 複雜、 歡欣、 困難。 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, and we got lucky with a brand-new batch of therapists. They didn't focus on all that was wrong with my kid. They didn't see her differences as problems to fix. They acknowledged her limitations, but they also saw her strengths, and they celebrated her for who she was. Their goal wasn't to make Fiona as normal as possible; their goal was simply to help her be as independent as possible so that she could fulfill her potential, however that looked for her.
後來我們搬到美國的另一州, 很幸運有了另一批嶄新的治療師。 他們不再注重於我孩子不對勁的地方。 他們不把她的異常 視為應該修理的問題。 他們承認她的侷限, 也看到她的強項, 他們表揚原本的她。 他們的目標並不是 使菲右娜變得更正常, 而是盡可能使她更獨立, 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. We call congenital differences "birth defects," as though human beings were objects on a factory line. We might offer pitying expressions when we learn that a colleague had a baby with Down syndrome. We hail a blockbuster film about a suicidal wheelchair user, despite the fact that actual wheelchair users tell us that stereotype is unfair and damaging. And sometimes our medical institutions decide what lives are not worth living. Such is the case with Amelia Rivera, a girl with my daughter's same syndrome. In 2012, a famous American children's hospital initially denied Amelia the right to a lifesaving kidney transplant because, according to their form, as it said, she was "mentally retarded." This is the way that the story of disabilities as bad manifests in a culture.
但是一般文化並沒有 這種對殘疾的開放態度。 我們把先天性的差異稱為 「先天的缺陷」, 彷彿人類是工廠生產線上的物品。 當我們聽說有個同事 生了個唐氏症的嬰兒, 我們或許會表示同情。 我們吹捧關於坐輪椅的 自殺者的商業大片, 儘管真實坐輪椅的人告訴我們 刻板的印象不公平且有害。 有時我們的醫療機構 決定什麼生命值不值得活。 就像艾米莉雅 · 里維拉的例子, 她和我的女兒有同樣的症狀。 起初一所美國兒童醫院在 2012 年 拒絕為艾米莉雅移植救命的腎臟, 因為根據他們的病歷, 她是「智障」。 這是文化對身心障礙者的 故事的糟糕體現。
But there's a surprisingly insidious counterstory -- the story, especially, that people with intellectual disabilities are good because they are here to teach us something magical, or they are inherently angelic and always sweet. You have heard this ableist trope before: the boy with Down syndrome who's one of God's special children, or the girl with the walker and the communication device who is a precious little angel. This story rears its head in my daughter's life around Christmastime, when certain people get positively giddy 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 of being human. And although at times, especially as a baby, my daughter has, in fact, looked angelic, she has grown into the type of kid who does the rascally things that any other kid does, such as when she, at age four, shoved her two-year-old sister. My girl deserves the right to annoy the hell out of you, like any other kid.
令人驚訝的是也有陰險的反面說法, 尤其是美好的心智障礙者的故事, 像是:他們來到世間是為了 要教我們一些神奇的東西, 或者他們天生像天使,總是很甜美。 你以前聽過這健全主義者的比喻: 唐氏症的男童是神特別的孩子, 或說使用助行器和通信器材的女孩 是珍貴的小天使。 大約聖誕節前後,這個故事 又在我女兒的生命中出現, 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。 暗示的是 他們未曾經歷過 或粘黏上人類的複雜。 儘管有時候,尤其在她嬰兒時期, 我的女兒的確看起來像個天使; 但她已長成像其他調皮搗蛋的孩子那樣, 做淘氣的事, 像是她六歲時猛推兩歲的妹妹。 我女兒有權讓你惱怒, 就像其他的孩子一樣。
When we label a person tragic or angelic, bad or good, we rob them of their humanity, along with not only the messiness and complexity that that title brings, but the rights and dignities as well. My girl does not exist to teach me things or any of us things, but she has indeed taught me: number one, how many mozzarella cheese sticks a 22-pound human being can consume in one day -- which is five, for the record; and two, the gift of questioning my culture's beliefs about what makes a life good and what makes life bad.
當我們把人貼標為可憐或可愛, 壞或好, 我們就剝奪了他們的人性, 剝奪的不只是連同標籤的雜亂、複雜, 還有權利和尊嚴。 我的女兒不是生來教我, 也不是來教其他任何人功課, 但她的確教了我: 第一,一個 22 磅的人 一天能吃掉多少根莫扎里拉起司棒。 答案是五根。 第二,她讓我得以懷疑我的文化信仰, 什麼使生命美好, 什麼使生命不好。
If you had told me six years ago that my daughter would sometimes use and iPad app to communicate, I might have thought that was sad. But now I recall the first day I handed Fiona her iPad, loaded with a thousand words, each represented by a tiny little icon or little square on her iPad app. And I recall how bold and hopeful it felt, even as some of her therapists said that my expectations were way too high, that she would never be able to hit those tiny targets. And I recall watching in awe as she gradually learned to flex her little thumb and hit the buttons to say words she loved, like "reggae" and "cheese" and a hundred other words she loved that her mouth couldn't yet say. And then we had to teach her less-fun words, prepositions -- words like "of" and "on" and "in." And we worked on this for a few weeks. And then I recall sitting at a dining room table with many relatives, and, apropos of absolutely nothing, Fiona used her iPad app to say, "poop in toilet."
如果六年前你告訴我 我的女兒有時會用 iPad app 來溝通, 我可能會認為那很可悲。 但現在回想我給菲右娜 iPad 的頭一天, iPad 裡面放了一千個字, 每個字用一個小小的圖標或方塊代表。 我猶記得當時覺得膽壯和有希望, 即使某些治療師認為我過於樂觀, 即使那些是微小的目標,她也達不到。 我回想讚嘆地看著她 慢慢地學會彎曲她的小拇指, 碰觸那個說出她喜愛字彙的按鈕, 像是「雷鬼」、「乳酪」, 以及其餘幾百個她喜愛, 但是仍然有口難言的字彙。 我們也得教她 不那麼有趣的字彙和介系詞, 像是 "of"、"on" 和 "in"。 我們練習了幾個星期, 然後我記得坐在餐桌旁, 有許多親戚在座, 毫無疑問地, 菲右娜用她的 iPad app 說出了: 「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. And that is a lot.
我的孩子是人,僅僅如此。 那就夠了。
Thank you.
謝謝。
(Applause)
(掌聲)