TED@BCG Milan
Heather Lanier: "Good" and "bad" are incomplete stories we tell ourselves
荷樂 · 雷尼爾: 好或壞不是整個故事
Filmed:
Readability: 4
2,298,877 views
荷樂 · 雷尼爾的女兒菲右娜患有導致發育遲緩的遺傳病症「沃夫 - 賀許宏氏症候群」。與一般人對於類似孩子的刻板印象不同，菲右娜既不悲慘，也不是慢飛天使。雷尼爾談及扶養這個罕病女孩的歷程：美好、複雜、快樂又艱辛。她質疑我們文化對於什麼是「好」、什麼是「壞」的假設；挑戰我們：不要在只專注在解決我們認為不正常的事，而是要把握生活。
Heather Lanier - Essayist, poet
Heather Lanier illuminates truths about the human condition that speak to both the head and the heart. Full bio
Heather Lanier illuminates truths about the human condition that speak to both the head and the heart. Full bio
Double-click the English transcript below to play the video.
00:12
There's an ancient parable
about a farmer who lost his horse.
about a farmer who lost his horse.
0
900
4091
有一則古老的寓言「塞翁失馬」，
講的是一個農夫失掉一匹馬。
講的是一個農夫失掉一匹馬。
00:17
And neighbors came over to say,
"Oh, that's too bad."
"Oh, that's too bad."
1
5015
3374
他的鄰居說：「唉，太糟了。」
00:20
And the farmer said,
"Good or bad, hard to say."
"Good or bad, hard to say."
2
8413
3369
農夫說：「是好是壞很難講。」
00:24
Days later, the horse returns
and brings with it seven wild horses.
and brings with it seven wild horses.
3
12649
5510
幾天後，那匹馬帶回七匹野馬。
00:30
And neighbors come over to say,
"Oh, that's so good!"
"Oh, that's so good!"
4
18183
3617
鄰居又說了：「啊，太好了。」
00:33
And the farmer just shrugs
and says, "Good or bad, hard to say."
and says, "Good or bad, hard to say."
5
21824
5105
農夫只是聳聳肩，
說：「好壞很難說。」
說：「好壞很難說。」
00:39
The next day, the farmer's son
rides one of the wild horses,
rides one of the wild horses,
6
27579
4072
過了一天，農夫的兒子
騎乘其中的一匹野馬，
騎乘其中的一匹野馬，
00:43
is thrown off and breaks his leg.
7
31675
2486
摔了下來，斷了一條腿。
00:46
And the neighbors say,
"Oh, that's terrible luck."
"Oh, that's terrible luck."
8
34185
3305
鄰居說：「啊，運氣真差。」
00:49
And the farmer says,
"Good or bad, hard to say."
"Good or bad, hard to say."
9
37514
4107
農夫說：「好壞難講。」
00:54
Eventually, officers come
knocking on people's doors,
knocking on people's doors,
10
42587
2671
後來軍官敲家家戶戶的門，
00:57
looking for men to draft for an army,
11
45282
2659
要拉夫從軍；
00:59
and they see the farmer's son and his leg
and they pass him by.
and they pass him by.
12
47965
3573
看到農夫的兒子腿斷了，
就放過了他。
就放過了他。
01:03
And neighbors say,
"Ooh, that's great luck!"
"Ooh, that's great luck!"
13
51562
2556
鄰居說：「哦，運氣真好！」
01:06
And the farmer says,
"Good or bad, hard to say."
"Good or bad, hard to say."
14
54142
4488
農夫說：「好或壞，很難說。」
01:11
I first heard this story 20 years ago,
15
59136
2447
二十年前我第一次聽到這個故事，
01:13
and I have since applied it 100 times.
16
61607
2587
從那時起，用了一百次。
01:16
Didn't get the job I wanted:
17
64218
1925
沒有得到我想要的工作：
01:18
good or bad, hard to say.
18
66734
1409
好壞很難說。
01:20
Got the job I wanted:
19
68905
2369
得到我想要的工作：
01:23
good or bad, hard to say.
20
71298
2127
好壞很難說。
01:25
To me, the story is not about
looking on the bright side
looking on the bright side
21
73972
3254
對我而言，這故事無關樂觀看待，
01:29
or waiting to see how things turn out.
22
77250
2386
也不是等著情況好轉；
01:32
It's about how eager we can be
to label a situation,
to label a situation,
23
80055
3683
而是不論我們有多麼迫切
想要把情況貼個標籤，
想要把情況貼個標籤，
01:35
to put concrete around it by judging it.
24
83762
2782
想要蓋棺論定，
01:38
But reality is much more fluid,
25
86901
3067
實情卻是不定型的，
01:41
and good and bad are often
incomplete stories that we tell ourselves.
incomplete stories that we tell ourselves.
26
89992
4846
我們說的好或壞常常是片面的。
01:46
The parable has been my warning
27
94862
2390
這寓言一直讓我自我警惕，
01:49
that by gripping tightly
to the story of good or bad,
to the story of good or bad,
28
97276
3624
緊抓著是好事或是壞事不放，
01:52
I close down my ability
to truly see a situation.
to truly see a situation.
29
100924
3754
使我關上了能夠看見實情的那扇門。
01:56
I learn more when I proceed
and loosen my grip
and loosen my grip
30
104702
3610
如果鬆開手，我會學到更多，
02:00
and proceed openly
with curiosity and wonder.
with curiosity and wonder.
31
108336
3298
能以開放和好奇的心態前進。
02:04
But seven years ago,
32
112415
2634
但是七年前，
02:07
when I was pregnant with my first child,
33
115073
2099
我懷著頭一胎，
02:09
I completely forgot this lesson.
34
117196
2820
完全忘了這一課。
02:12
I believed I knew
wholeheartedly what was good.
wholeheartedly what was good.
35
120471
3149
我以為自己全然了解什麼是好的。
02:15
When it came to having kids,
36
123644
1709
想到養育小孩，
02:17
I thought that good
was some version of a superbaby,
was some version of a superbaby,
37
125377
3512
我認為：好就是有超棒的孩子，
02:20
some ultrahealthy human
who possessed not a single flaw
who possessed not a single flaw
38
128913
3964
特別健康，沒有一點缺陷，
02:24
and would practically wear a cape
flying into her superhero future.
flying into her superhero future.
39
132901
4749
就像以後會披著超人的披肩飛向未來。
02:29
I took DHA pills to ensure that my baby
had a super-high-functioning,
had a super-high-functioning,
40
137674
4747
懷孕時我服用 DHA 藥丸
以確保嬰兒以後的頭腦會超級聰明；
02:34
supersmart brain,
41
142445
1285
02:35
and I ate mostly organic food,
42
143754
2673
我多半食用有機食品，
02:38
and I trained for a medication-free labor,
43
146451
2555
訓練自己生產時不用藥，
02:41
and I did many other things
44
149030
1821
還做了其他很多事，
02:42
because I thought these things
would help me make not just a good baby,
would help me make not just a good baby,
45
150875
4226
因為我以為這樣做
不只能讓我生個好嬰兒，
不只能讓我生個好嬰兒，
02:47
but the best baby possible.
46
155125
2465
而且是最棒的嬰兒。
02:50
When my daughter Fiona was born,
she weighed 4 pounds, 12 ounces,
she weighed 4 pounds, 12 ounces,
47
158693
4689
我的女兒菲右娜出生時
重 4 磅 12 盎司，
重 4 磅 12 盎司，
02:55
or 2.15 kilograms.
48
163406
2776
也就是 2.15 公斤。
02:58
The pediatrician said there were only
two possible explanations
two possible explanations
49
166514
3892
小兒科醫生說只有兩種可能性
03:02
for her tiny size.
50
170430
1618
可以解釋她的個兒為何這麼嬌小。
03:04
"Either," he said, "it's bad seed,"
51
172072
3085
他說：「要麼是種不好，
03:07
"or it's bad soil."
52
175744
1619
要麼是土不好。」
03:09
And I wasn't so tired from labor
to lose the thread of his logic:
to lose the thread of his logic:
53
177773
4843
我沒精疲力盡到聽不出他的邏輯：
03:14
my newborn, according to the doctor,
54
182640
2295
醫生認為我的新生兒是窳劣的。
03:16
was a bad plant.
55
184959
1694
03:19
Eventually, I learned that my daughter
had an ultra-rare chromosomal condition
had an ultra-rare chromosomal condition
56
187873
4259
後來我得知女兒有
極為罕見的染色體狀況，
極為罕見的染色體狀況，
03:24
called Wolf-Hirschhorn syndrome.
57
192156
2016
叫做「沃夫-賀許宏氏症候群」。
03:26
She was missing a chunk
of her fourth chromosome.
of her fourth chromosome.
58
194196
3204
她的第四組染色體少了一段。
03:29
And although my daughter was good --
59
197830
3185
儘管我的女兒好好的，
03:33
she was alive,
60
201039
1357
她活著，
03:34
and she had brand new baby skin
61
202420
2057
她有新生嬰兒的肌膚
03:36
and the most aware onyx eyes --
62
204501
3443
和最清澈的瑪瑙色眼珠。
03:39
I also learned that people
with her syndrome
with her syndrome
63
207968
2120
我也得知像她這種症狀的人，
03:42
have significant developmental
delays and disabilities.
delays and disabilities.
64
210112
3294
發育會顯著遲緩和有障礙。
03:45
Some never learn to walk or talk.
65
213430
2804
有些永遠學不會走路或說話。
03:48
I did not have the equanimity
of the farmer.
of the farmer.
66
216747
3405
我不像農夫那樣平靜。
03:52
The situation looked
unequivocally bad to me.
unequivocally bad to me.
67
220176
3977
在我看來，情況毫不含糊的糟糕。
03:56
But here's where the parable is so useful,
68
224177
3227
但是寓言正在這裡派上用場，
03:59
because for weeks after her diagnosis,
I felt gripped by despair,
I felt gripped by despair,
69
227428
5001
因為在診斷後的幾週，
我深陷絕望，
04:04
locked in the story
that all of this was tragic.
that all of this was tragic.
70
232453
3816
全然困在悲慘的故事裡。
04:08
Reality, though -- thankfully --
is much more fluid,
is much more fluid,
71
236293
3765
幸好現實不是定型的，
04:12
and it has much more to teach.
72
240082
2590
有很多事要我學習。
04:15
As I started to get to know
this mysterious person who was my kid,
this mysterious person who was my kid,
73
243413
4767
我開始慢慢認識這個神秘的孩子，
04:20
my fixed, tight story of tragedy loosened.
74
248204
4153
我那定型、緊繃的悲劇故事鬆開了。
04:24
It turned out my girl loved reggae,
75
252381
2369
原來我的女兒喜歡雷鬼音樂，
04:26
and she would smirk when my husband
would bounce her tiny body up and down
would bounce her tiny body up and down
76
254774
3912
我的丈夫隨著音樂旋律
上下輕搖她小小的身體時，
上下輕搖她小小的身體時，
她會傻笑。
04:30
to the rhythm.
77
258710
1180
04:31
Her onyx eyes eventually turned
the most stunning Lake Tahoe blue,
the most stunning Lake Tahoe blue,
78
259914
4686
她的琥珀色眼珠後來變成
像太浩湖那樣令人驚艷的藍，
像太浩湖那樣令人驚艷的藍，
04:36
and she loved using them to gaze intently
into other people's eyes.
into other people's eyes.
79
264624
4366
她喜歡定睛看著別人的雙眼。
04:41
At five months old, she could not
hold her head up like other babies,
hold her head up like other babies,
80
269376
3807
雖然五個月大時
她不能像別的嬰兒那樣抬著頭，
她不能像別的嬰兒那樣抬著頭，
04:45
but she could hold this deep,
intent eye contact.
intent eye contact.
81
273207
2987
但她能專注盯著看。
04:48
One friend said, "She's the most
aware baby I've ever seen."
aware baby I've ever seen."
82
276568
4308
一個朋友說：「她是我見過
最察覺的嬰兒。」
最察覺的嬰兒。」
04:53
But where I saw the gift
of her calm, attentive presence,
of her calm, attentive presence,
83
281513
3965
雖然我看到的是
她平靜、專注存在的稟賦，
她平靜、專注存在的稟賦，
04:57
an occupational therapist who came
over to our house to work with Fiona
over to our house to work with Fiona
84
285502
4353
但是來我家替菲右娜復健的職業治療師
05:01
saw a child who was neurologically dull.
85
289879
2762
看到的卻是一個神經遲緩的孩子，
05:04
This therapist was especially disappointed
86
292665
3276
這個治療師對於菲右娜
那時還沒辦法翻身尤其失望，
那時還沒辦法翻身尤其失望，
05:07
that Fiona wasn't rolling over yet,
87
295965
2380
05:10
and so she told me we needed
to wake her neurology up.
to wake her neurology up.
88
298369
3259
因此她說我們必須要喚醒她的神經。
05:13
One day she leaned over
my daughter's body,
my daughter's body,
89
301652
2919
有天她俯在我女兒的身上，
05:16
took her tiny shoulders,
90
304595
1494
抓住她小小的肩膀，
05:18
jostled her and said, "Wake up! Wake up!"
91
306113
2864
推擠著她，說：「醒過來！醒過來！」
05:21
We had a few therapists
visit our house that first year,
visit our house that first year,
92
309738
3101
頭一年有幾個治療師來我們家，
05:24
and they usually focused on what
they thought was bad about my kid.
they thought was bad about my kid.
93
312863
3726
通常他們著重在他們認為
我孩子不好的地方。
我孩子不好的地方。
05:28
I was really happy when
Fiona started using her right hand
Fiona started using her right hand
94
316613
2930
當菲右娜開始用她的右手時
我非常的高興，
我非常的高興，
05:31
to bully a dangling stuffed sheep,
95
319567
2729
她用手欺負一個懸掛的綿羊，
05:34
but the therapist was fixated
on my child's left hand.
on my child's left hand.
96
322320
3683
但是治療師卻緊盯著她的左手。
05:38
Fiona had a tendency
not to use this hand very often,
not to use this hand very often,
97
326027
3092
菲右娜傾向於少用左手，
05:41
and she would cross
the fingers on that hand.
the fingers on that hand.
98
329143
2868
交叉著左手的手指。
05:44
So the therapist said
we should devise a splint,
we should devise a splint,
99
332035
2900
因此治療師認為需要設計一個夾板，
05:46
which would rob my kid of the ability
to actually use those fingers,
to actually use those fingers,
100
334959
4145
致使我的孩子根本不能
使用那些手指頭，
使用那些手指頭，
05:51
but it would at least force them
into some position that looked normal.
into some position that looked normal.
101
339128
3587
僅為把那些手指頭
扳到看起來正常的位置。
扳到看起來正常的位置。
05:55
In that first year, I was starting
to realize a few things.
to realize a few things.
102
343516
2960
第一年，我開始認知了幾件事。
05:58
One: ancient parables aside,
my kid had some bad therapists.
my kid had some bad therapists.
103
346500
3918
第一：古老的寓言先擺一邊，
我孩子有幾個差勁的治療師。
我孩子有幾個差勁的治療師。
06:02
(Laughter)
104
350442
1049
（笑聲）
06:03
Two: I had a choice.
105
351515
1632
第二：我有選擇。
06:05
Like a person offered to swallow
a red pill or a blue pill,
a red pill or a blue pill,
106
353171
4094
就像被供給紅藥丸或藍藥丸來服用，
06:09
I could choose to see
my daughter's differences as bad;
my daughter's differences as bad;
107
357289
3609
我能選擇視女兒的不同為不好，
06:12
I could strive toward the goal
that her therapists called,
that her therapists called,
108
360922
3328
能選擇努力去實現
她的治療師聲稱的目標：
她的治療師聲稱的目標：
06:16
"You'd never know."
109
364274
1186
「妳永遠不會知道。」
06:17
They loved to pat themselves on the back
when they could say about a kid,
when they could say about a kid,
110
365484
3470
他們認可自己對孩子的評論：
06:20
"You'd never know he was 'delayed'
or 'autistic' or 'different.'"
or 'autistic' or 'different.'"
111
368978
4602
「你永遠不會知道他是
『遲緩』、『自閉』或是『不同』。」
『遲緩』、『自閉』或是『不同』。」
06:25
I could believe that the good path
was the path that erased
was the path that erased
112
373604
3831
我能選擇認可
盡量消弭差異是好的方式；
06:29
as many differences as possible.
113
377459
2189
06:32
Of course, this would have been
a disastrous pursuit,
a disastrous pursuit,
114
380610
2808
當然那會導致慘痛的結果，
06:35
because at the cellular level,
my daughter had rare blueprints.
my daughter had rare blueprints.
115
383442
4227
因為我女兒的細胞
有罕見的基因藍圖。
有罕見的基因藍圖。
06:39
She wasn't designed
to be like other people.
to be like other people.
116
387693
2535
她被設計成異於常人。
06:42
She would lead a rare life.
117
390252
1716
她將會過著罕見的生活。
06:44
So, I had another choice:
I could drop my story
I could drop my story
118
392465
3887
因此，我有另一個選擇：
我能捨棄神經異常、
06:48
that neurological differences
and developmental delays and disabilities
and developmental delays and disabilities
119
396376
5282
發展遲緩、殘障是不好的這種認知；
06:53
were bad,
120
401682
1159
06:54
which means I could also drop my story
that a more able-bodied life was better.
that a more able-bodied life was better.
121
402865
5896
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。
就比較好的這個想法。
07:00
I could release my cultural biases
about what made a life good or bad
about what made a life good or bad
122
408785
4903
我可以放掉決定生命
是好是壞的文化偏見，
是好是壞的文化偏見，
07:05
and simply watch
my daughter's life as it unfolded
my daughter's life as it unfolded
123
413712
3584
而只專注在我女兒正展開
07:09
with openness and curiosity.
124
417320
2512
開放和好奇的生命。
07:12
One afternoon she was lying on her back,
125
420593
2055
有一天下午，她背躺著，
07:14
and she arched her back on the carpet
126
422672
3140
她在地毯上弓起了背，
07:17
stuck her tongue
out of the side of her mouth
out of the side of her mouth
127
425836
2952
舌頭伸出嘴側，
07:20
and managed to torque
her body onto her belly.
her body onto her belly.
128
428812
3517
扭轉成腹部著地趴著的姿勢。
07:24
Then she tipped over
and rolled back onto her back,
and rolled back onto her back,
129
432866
2687
然後她又轉成背躺著，
07:27
and once there, she managed
to do it all over again,
to do it all over again,
130
435577
3125
躺好後，她又做了一次，
07:30
rolling and wiggling her 12-pound self
under a coffee table.
under a coffee table.
131
438726
3864
在咖啡桌下滾動和擺動
她 12 磅重的身軀。
她 12 磅重的身軀。
07:34
At first, I thought
she'd gotten stuck there,
she'd gotten stuck there,
132
442614
2748
起初，我以為她被困住了，
07:37
but then I saw her reaching for something
that her eye had been on all along:
that her eye had been on all along:
133
445386
5113
但後來我看到她伸手去拿
她的眼睛一直盯著的東西：
她的眼睛一直盯著的東西：
07:42
a black electric cord.
134
450523
1646
一條黑色的電源線。
07:44
She was a year old.
135
452626
1948
當時她一歲。
07:46
Other babies her age were for sure
pulling up to stand and toddling around,
pulling up to stand and toddling around,
136
454598
5133
同齡的其他嬰兒肯定能
自己站起來、蹣跚前進，
自己站起來、蹣跚前進，
07:51
some of them.
137
459755
1300
有些能夠。
07:53
To some, my kid's situation looked bad:
138
461897
3511
有些人認為我孩子的情況很糟糕，
07:57
a one-year-old who could only roll.
139
465432
1897
已經一歲了，只會翻身而已。
07:59
But screw that.
140
467353
1170
但是，管他的。
08:00
My kid was enjoying the new,
limber freedom of mobility.
limber freedom of mobility.
141
468547
4700
我的孩子正在享受新的、
肢體靈活的自由。
肢體靈活的自由。
08:05
I rejoiced.
142
473271
1150
我歡欣。
08:07
Then again, what I watched that afternoon
was a baby yanking on an electric cord,
was a baby yanking on an electric cord,
143
475326
4575
然而那天下午我看到的
是個拉扯電線的嬰兒，
是個拉扯電線的嬰兒，
08:11
so you know,
144
479925
1190
想當然爾，
08:13
good or bad, hard to say.
145
481139
1566
是好或是壞，很難說。
08:14
(Laughter)
146
482729
1150
（笑聲）
08:16
I started seeing
that when I released my grip
that when I released my grip
147
484967
3110
我開始看到，當我鬆開了手，
08:20
about what made a life good or bad,
148
488101
2343
不再執著於生命怎麼樣是好、是壞，
08:22
I could watch my daughter's life unfold
and see what it was.
and see what it was.
149
490468
3905
我看見、了解女兒正在展開生命：
08:27
It was beautiful,
150
495151
1404
美麗、
08:28
it was complicated,
151
496579
1536
複雜、
08:31
joyful, hard --
152
499176
2099
歡欣、
困難。
08:33
in other words: just another expression
of the human experience.
of the human experience.
153
501299
5729
換言之，就是人類經驗的另一種表達。
08:40
Eventually, my family and I moved
to a new state in America,
to a new state in America,
154
508490
3197
後來我們搬到美國的另一州，
08:43
and we got lucky with a brand-new
batch of therapists.
batch of therapists.
155
511711
3893
很幸運有了另一批嶄新的治療師。
08:47
They didn't focus on
all that was wrong with my kid.
all that was wrong with my kid.
156
515628
3438
他們不再注重於我孩子不對勁的地方。
08:51
They didn't see her differences
as problems to fix.
as problems to fix.
157
519090
3025
他們不把她的異常
視為應該修理的問題。
視為應該修理的問題。
08:54
They acknowledged her limitations,
158
522139
2499
他們承認她的侷限，
08:56
but they also saw her strengths,
159
524662
2659
也看到她的強項，
08:59
and they celebrated her for who she was.
160
527345
2831
他們表揚原本的她。
09:02
Their goal wasn't to make Fiona
as normal as possible;
as normal as possible;
161
530931
3508
他們的目標並不是
使菲右娜變得更正常，
使菲右娜變得更正常，
09:06
their goal was simply to help her
be as independent as possible
be as independent as possible
162
534463
3555
而是盡可能使她更獨立，
09:10
so that she could fulfill her potential,
however that looked for her.
however that looked for her.
163
538042
4313
使她能夠落實她的潛能，
不論什麼樣的潛能。
不論什麼樣的潛能。
09:14
But the culture at large does not take
this open attitude about disabilities.
this open attitude about disabilities.
164
542883
5628
但是一般文化並沒有
這種對殘疾的開放態度。
這種對殘疾的開放態度。
09:20
We call congenital differences
"birth defects,"
"birth defects,"
165
548535
3468
我們把先天性的差異稱為
「先天的缺陷」，
「先天的缺陷」，
09:24
as though human beings
were objects on a factory line.
were objects on a factory line.
166
552027
3478
彷彿人類是工廠生產線上的物品。
09:27
We might offer pitying expressions
167
555878
2303
當我們聽說有個同事
生了個唐氏症的嬰兒，
生了個唐氏症的嬰兒，
09:30
when we learn that a colleague
had a baby with Down syndrome.
had a baby with Down syndrome.
168
558205
3298
我們或許會表示同情。
09:33
We hail a blockbuster film
about a suicidal wheelchair user,
about a suicidal wheelchair user,
169
561527
4008
我們吹捧關於坐輪椅的
自殺者的商業大片，
自殺者的商業大片，
09:37
despite the fact that actual
wheelchair users tell us
wheelchair users tell us
170
565559
3395
儘管真實坐輪椅的人告訴我們
09:40
that stereotype is unfair and damaging.
171
568978
3245
刻板的印象不公平且有害。
09:44
And sometimes our medical institutions
decide what lives are not worth living.
decide what lives are not worth living.
172
572247
5115
有時我們的醫療機構
決定什麼生命值不值得活。
決定什麼生命值不值得活。
09:49
Such is the case with Amelia Rivera,
173
577386
2433
就像艾米莉雅 · 里維拉的例子，
09:51
a girl with my daughter's same syndrome.
174
579843
2209
她和我的女兒有同樣的症狀。
09:54
In 2012, a famous American
children's hospital
children's hospital
175
582076
3922
起初一所美國兒童醫院在 2012 年
09:58
initially denied Amelia the right
to a lifesaving kidney transplant
to a lifesaving kidney transplant
176
586022
4600
拒絕為艾米莉雅移植救命的腎臟，
10:02
because, according to their form,
177
590646
1964
因為根據他們的病歷，
10:04
as it said, she was "mentally retarded."
178
592634
2869
她是「智障」。
10:07
This is the way that the story
of disabilities as bad manifests
of disabilities as bad manifests
179
595527
3842
這是文化對身心障礙者的
故事的糟糕體現。
故事的糟糕體現。
10:11
in a culture.
180
599393
1426
10:12
But there's a surprisingly
insidious counterstory --
insidious counterstory --
181
600843
3816
令人驚訝的是也有陰險的反面說法，
10:16
the story, especially, that people
with intellectual disabilities are good
with intellectual disabilities are good
182
604683
4647
尤其是美好的心智障礙者的故事，
10:21
because they are here
to teach us something magical,
to teach us something magical,
183
609354
3267
像是：他們來到世間是為了
要教我們一些神奇的東西，
要教我們一些神奇的東西，
10:24
or they are inherently angelic
and always sweet.
and always sweet.
184
612645
4308
或者他們天生像天使，總是很甜美。
10:28
You have heard this ableist trope before:
185
616977
3375
你以前聽過這健全主義者的比喻：
10:32
the boy with Down syndrome
who's one of God's special children,
who's one of God's special children,
186
620376
3876
唐氏症的男童是神特別的孩子，
10:36
or the girl with the walker
and the communication device
and the communication device
187
624276
3829
或說使用助行器和通信器材的女孩
10:40
who is a precious little angel.
188
628129
1740
是珍貴的小天使。
10:42
This story rears its head
in my daughter's life
in my daughter's life
189
630422
2307
大約聖誕節前後，這個故事
又在我女兒的生命中出現，
又在我女兒的生命中出現，
10:44
around Christmastime,
190
632753
1245
10:46
when certain people get positively giddy
191
634022
2384
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。
身背天使的翅膀就會頭暈。
10:48
at the thought of seeing her
in angel's wings and a halo
in angel's wings and a halo
192
636430
3206
10:51
at the pageant.
193
639660
1428
10:53
The insinuation is that these people
don't experience the sticky complexities
don't experience the sticky complexities
194
641112
5456
暗示的是
他們未曾經歷過
或粘黏上人類的複雜。
10:58
of being human.
195
646592
1460
11:00
And although at times,
especially as a baby,
especially as a baby,
196
648457
2477
儘管有時候，尤其在她嬰兒時期，
11:02
my daughter has, in fact, looked angelic,
197
650958
3189
我的女兒的確看起來像個天使；
11:06
she has grown into the type of kid
198
654171
2334
但她已長成像其他調皮搗蛋的孩子那樣，
11:08
who does the rascally things
that any other kid does,
that any other kid does,
199
656529
3285
做淘氣的事，
11:11
such as when she, at age four,
shoved her two-year-old sister.
shoved her two-year-old sister.
200
659838
4982
像是她六歲時猛推兩歲的妹妹。
11:17
My girl deserves the right
to annoy the hell out of you,
to annoy the hell out of you,
201
665643
3251
我女兒有權讓你惱怒，
11:20
like any other kid.
202
668918
1359
就像其他的孩子一樣。
11:23
When we label a person tragic or angelic,
203
671532
3533
當我們把人貼標為可憐或可愛，
11:27
bad or good,
204
675089
2090
壞或好，
11:29
we rob them of their humanity,
205
677203
1930
我們就剝奪了他們的人性，
11:31
along with not only the messiness
and complexity that that title brings,
and complexity that that title brings,
206
679750
4271
剝奪的不只是連同標籤的雜亂、複雜，
11:36
but the rights and dignities as well.
207
684045
2579
還有權利和尊嚴。
11:40
My girl does not exist to teach me things
208
688228
2562
我的女兒不是生來教我，
也不是來教其他任何人功課，
11:42
or any of us things,
209
690814
1417
11:44
but she has indeed taught me:
210
692255
2162
但她的確教了我：
11:46
number one, how many
mozzarella cheese sticks
mozzarella cheese sticks
211
694441
2982
第一，一個 22 磅的人
一天能吃掉多少根莫扎里拉起司棒。
11:49
a 22-pound human being
can consume in one day --
can consume in one day --
212
697447
3468
11:52
which is five, for the record;
213
700939
2549
答案是五根。
11:55
and two, the gift of questioning
my culture's beliefs
my culture's beliefs
214
703512
5191
第二，她讓我得以懷疑我的文化信仰，
12:00
about what makes a life good
215
708727
2219
什麼使生命美好，
12:02
and what makes life bad.
216
710970
1617
什麼使生命不好。
12:04
If you had told me six years ago
217
712990
2976
如果六年前你告訴我
12:07
that my daughter would sometimes use
and iPad app to communicate,
and iPad app to communicate,
218
715990
3625
我的女兒有時會用 iPad app 來溝通，
12:11
I might have thought that was sad.
219
719639
2270
我可能會認為那很可悲。
12:14
But now I recall the first day
I handed Fiona her iPad,
I handed Fiona her iPad,
220
722644
3596
但現在回想我給菲右娜
iPad 的頭一天，
iPad 的頭一天，
12:18
loaded with a thousand words,
221
726264
2717
iPad 裡面放了一千個字，
12:21
each represented by a tiny little icon
or little square on her iPad app.
or little square on her iPad app.
222
729005
5138
每個字用一個小小的圖標或方塊代表。
12:26
And I recall how bold and hopeful it felt,
223
734167
3138
我猶記得當時覺得膽壯和有希望，
12:29
even as some of her therapists said
that my expectations were way too high,
that my expectations were way too high,
224
737329
5134
即使某些治療師認為我過於樂觀，
12:34
that she would never be able
to hit those tiny targets.
to hit those tiny targets.
225
742487
3336
即使那些是微小的目標，她也達不到。
12:38
And I recall watching in awe
as she gradually learned
as she gradually learned
226
746276
4193
我回想讚嘆地看著她
12:42
to flex her little thumb
227
750493
2169
慢慢地學會彎曲她的小拇指，
12:44
and hit the buttons to say
words she loved,
words she loved,
228
752686
3052
碰觸那個說出她喜愛字彙的按鈕，
12:47
like "reggae" and "cheese"
229
755762
2999
像是「雷鬼」、「乳酪」，
12:50
and a hundred other words she loved
that her mouth couldn't yet say.
that her mouth couldn't yet say.
230
758785
3515
以及其餘幾百個她喜愛，
但是仍然有口難言的字彙。
但是仍然有口難言的字彙。
12:55
And then we had to teach her
less-fun words, prepositions --
less-fun words, prepositions --
231
763216
2897
我們也得教她
不那麼有趣的字彙和介系詞，
不那麼有趣的字彙和介系詞，
12:58
words like "of" and "on" and "in."
232
766137
2885
像是 "of"、"on" 和 "in"。
13:01
And we worked on this for a few weeks.
233
769046
2270
我們練習了幾個星期，
13:03
And then I recall sitting
at a dining room table
at a dining room table
234
771340
3400
然後我記得坐在餐桌旁，
13:06
with many relatives,
235
774764
1981
有許多親戚在座，
13:08
and, apropos of absolutely nothing,
236
776769
3110
毫無疑問地，
13:11
Fiona used her iPad app to say,
237
779903
3425
菲右娜用她的 iPad app 說出了：
13:15
"poop in toilet."
238
783352
2818
「馬桶裡有大便。」
13:18
(Laughter)
239
786194
1234
（笑聲）
13:20
Good or bad, hard to say.
240
788168
1856
好或壞，很難講。
13:22
(Laughter)
241
790048
1150
（笑聲）
13:23
My kid is human, that's all.
242
791584
2377
我的孩子是人，僅僅如此。
13:25
And that is a lot.
243
793985
1574
那就夠了。
13:28
Thank you.
244
796268
1277
謝謝。
13:29
(Applause)
245
797569
3832
（掌聲）
ABOUT THE SPEAKER
Heather Lanier - Essayist, poetHeather Lanier illuminates truths about the human condition that speak to both the head and the heart.
Why you should listen
As an essayist and a poet, Heather Lanier's work spans a range of subjects, from parenting and disability to pop culture and religion. She is the author of two award-winning poetry chapbooks, The Story You Tell Yourself and Heart-Shaped Bed in Hiroshima, along with the nonfiction book, Teaching in the Terrordome: Two Years in West Baltimore with Teach For America, which MacArthur Genius Deborah Meier called "a heart-wrenching … much-needed account." She has received an Ohio Arts Council Individual Excellence Award and a Vermont Creation Grant.
In her viral Vela Magazine essay, "SuperBabies Don't Cry," Lanier chronicles her daughter's diagnosis of a rare chromosomal syndrome and explores the ways pregnant women are pressured to create perfect humans. As a mother and a disability advocate, she shines a light on ableist attitudes, encourages readers to see disability as an aspect of diversity, and marvels at the strange beauty of being human. Her book about raising her daughter is forthcoming from Penguin Press and Piatkus / Little, Brown UK. She writes a related blog here, and teaches writing at Southern Vermont College.
Heather Lanier | Speaker | TED.com