Love, no matter what | Andrew Solomon

1,022,243 views ・ 2013-06-03

TED


Please double-click on the English subtitles below to play the video.

00:00
Translator: Timothy Covell Reviewer: Morton Bast
0
0
7000
00:12
"Even in purely nonreligious terms,
1
12976
4230
00:17
homosexuality represents a misuse of the sexual faculty.
2
17230
5216
00:22
It is a pathetic little second-rate substitute for reality --
3
22970
4721
00:27
a pitiable flight from life.
4
27715
1946
00:30
As such, it deserves no compassion,
5
30167
3746
00:33
it deserves no treatment as minority martyrdom,
6
33937
5182
00:39
and it deserves not to be deemed anything but a pernicious sickness."
7
39143
5940
00:45
That's from "Time" magazine in 1966, when I was three years old.
8
45687
5026
00:51
And last year, the president of the United States
9
51215
3504
00:54
came out in favor of gay marriage.
10
54743
2663
00:57
(Applause)
11
57992
6964
01:05
And my question is:
12
65488
1557
01:07
How did we get from there to here?
13
67069
3556
01:10
How did an illness become an identity?
14
70649
4062
01:15
When I was perhaps six years old,
15
75497
3067
01:18
I went to a shoe store with my mother and my brother.
16
78588
2540
01:21
And at the end of buying our shoes,
17
81152
2571
01:23
the salesman said to us that we could each have a balloon to take home.
18
83747
3446
01:27
My brother wanted a red balloon,
19
87611
2116
01:29
and I wanted a pink balloon.
20
89751
2540
01:33
My mother said that she thought I'd really rather have a blue balloon.
21
93092
4602
01:37
(Laughter)
22
97718
1031
01:38
But I said that I definitely wanted the pink one.
23
98773
2338
01:41
And she reminded me that my favorite color was blue.
24
101135
5104
01:46
The fact that my favorite color now is blue, but I'm still gay --
25
106752
4367
01:51
(Laughter)
26
111143
3229
01:54
is evidence of both my mother's influence
27
114396
2851
01:57
and its limits.
28
117271
1154
01:58
(Laughter)
29
118449
2217
02:00
(Applause)
30
120690
6419
02:07
When I was little, my mother used to say,
31
127704
2670
02:10
"The love you have for your children is like no other feeling in the world.
32
130398
4587
02:15
And until you have children, you don't know what it's like."
33
135009
3176
02:18
And when I was little, I took it as the greatest compliment in the world
34
138209
3450
02:21
that she would say that about parenting my brother and me.
35
141683
2762
02:24
And when I was an adolescent, I thought, "But I'm gay,
36
144469
3318
02:27
and so I probably can't have a family."
37
147811
2332
02:30
And when she said it, it made me anxious.
38
150167
2365
02:32
And after I came out of the closet,
39
152556
1697
02:34
when she continued to say it, it made me furious.
40
154277
2903
02:37
I said, "I'm gay. That's not the direction that I'm headed in.
41
157204
4294
02:41
And I want you to stop saying that."
42
161522
2036
02:47
About 20 years ago,
43
167400
1699
02:49
I was asked by my editors at the "New York Times Magazine"
44
169123
3051
02:52
to write a piece about Deaf culture.
45
172198
2696
02:54
And I was rather taken aback.
46
174918
1406
02:56
I had thought of deafness entirely as an illness:
47
176348
2304
02:58
those poor people, they couldn't hear,
48
178676
1960
03:00
they lacked hearing, and what could we do for them?
49
180660
2620
03:03
And then I went out into the Deaf world.
50
183304
2494
03:05
I went to Deaf clubs.
51
185822
1881
03:07
I saw performances of Deaf theater and of Deaf poetry.
52
187727
4378
03:12
I even went to the Miss Deaf America contest in Nashville, Tennessee,
53
192129
5706
03:17
where people complained about that slurry Southern signing.
54
197859
3643
03:22
(Laughter)
55
202031
3544
03:26
And as I plunged deeper and deeper into the Deaf world,
56
206035
4113
03:30
I became convinced that Deafness was a culture
57
210172
2974
03:33
and that the people in the Deaf world who said,
58
213170
2222
03:35
"We don't lack hearing; we have membership in a culture,"
59
215416
3471
03:38
were saying something that was viable.
60
218911
2262
03:41
It wasn't my culture,
61
221197
1428
03:42
and I didn't particularly want to rush off and join it,
62
222649
2929
03:45
but I appreciated that it was a culture
63
225602
2510
03:48
and that for the people who were members of it,
64
228136
2367
03:50
it felt as valuable as Latino culture or gay culture or Jewish culture.
65
230527
6330
03:56
It felt as valid, perhaps, even as American culture.
66
236881
4032
04:01
Then a friend of a friend of mine had a daughter who was a dwarf.
67
241898
3292
04:05
And when her daughter was born,
68
245214
1499
04:06
she suddenly found herself confronting questions
69
246737
2349
04:09
that now began to seem quite resonant to me.
70
249110
2633
04:11
She was facing the question of what to do with this child.
71
251767
3586
04:15
Should she say, "You're just like everyone else but a little bit shorter?"
72
255377
3754
04:19
Or should she try to construct some kind of dwarf identity,
73
259155
3217
04:22
get involved in the Little People of America,
74
262396
2371
04:24
become aware of what was happening for dwarfs?
75
264791
2577
04:27
And I suddenly thought,
76
267704
1483
04:29
"Most deaf children are born to hearing parents.
77
269211
2505
04:31
Those hearing parents tend to try to cure them.
78
271740
2449
04:34
Those deaf people discover community somehow in adolescence.
79
274213
4129
04:38
Most gay people are born to straight parents.
80
278366
2136
04:40
Those straight parents often want them to function
81
280526
2571
04:43
in what they think of as the mainstream world,
82
283121
2228
04:45
and those gay people have to discover identity later on.
83
285373
3451
04:48
And here was this friend of mine,
84
288848
1638
04:50
looking at these questions of identity with her dwarf daughter.
85
290510
3520
04:54
And I thought, "There it is again:
86
294054
1714
04:55
a family that perceives itself to be normal
87
295792
2495
04:58
with a child who seems to be extraordinary."
88
298311
2621
05:00
And I hatched the idea that there are really two kinds of identity.
89
300956
4037
05:05
There are vertical identities,
90
305518
1469
05:07
which are passed down generationally from parent to child.
91
307011
3171
05:10
Those are things like ethnicity,
92
310206
2124
05:12
frequently nationality, language, often religion.
93
312354
3325
05:15
Those are things you have in common with your parents and with your children.
94
315703
4480
05:20
And while some of them can be difficult,
95
320207
2428
05:22
there's no attempt to cure them.
96
322659
1944
05:24
You can argue that it's harder in the United States --
97
324627
3232
05:27
our current presidency notwithstanding --
98
327883
2119
05:30
to be a person of color.
99
330026
1640
05:31
And yet, we have nobody who is trying to ensure
100
331690
2716
05:34
that the next generation of children born to African-Americans and Asians
101
334430
4046
05:38
come out with creamy skin and yellow hair.
102
338500
2852
05:42
There are these other identities which you have to learn from a peer group,
103
342027
4090
05:46
and I call them "horizontal identities,"
104
346141
2076
05:48
because the peer group is the horizontal experience.
105
348241
3105
05:51
These are identities that are alien to your parents
106
351370
2577
05:53
and that you have to discover when you get to see them in peers.
107
353971
4194
05:58
And those identities, those horizontal identities,
108
358189
3061
06:01
people have almost always tried to cure.
109
361274
3733
06:05
And I wanted to look at what the process is
110
365031
2335
06:07
through which people who have those identities
111
367390
2555
06:09
come to a good relationship with them.
112
369969
2469
06:12
And it seemed to me that there were three levels of acceptance
113
372462
4147
06:16
that needed to take place.
114
376633
1638
06:18
There's self-acceptance, there's family acceptance, and there's social acceptance.
115
378295
5351
06:23
And they don't always coincide.
116
383670
2222
06:25
And a lot of the time, people who have these conditions are very angry,
117
385916
3814
06:29
because they feel as though their parents don't love them,
118
389754
3482
06:33
when what actually has happened is that their parents don't accept them.
119
393260
3728
06:37
Love is something that, ideally, is there unconditionally
120
397012
3174
06:40
throughout the relationship between a parent and a child.
121
400210
3269
06:43
But acceptance is something that takes time.
122
403503
3134
06:46
It always takes time.
123
406661
1744
06:49
One of the dwarfs I got to know was a guy named Clinton Brown.
124
409199
4088
06:53
When he was born, he was diagnosed with diastrophic dwarfism,
125
413859
3234
06:57
a very disabling condition,
126
417117
1650
06:58
and his parents were told that he would never walk,
127
418791
2397
07:01
he would never talk,
128
421212
1174
07:02
he would have no intellectual capacity,
129
422410
2023
07:04
and he would probably not even recognize them.
130
424457
2440
07:06
And it was suggested to them that they leave him at the hospital
131
426921
3530
07:10
so that he could die there quietly.
132
430475
2040
07:12
His mother said she wasn't going to do it,
133
432539
2160
07:14
and she took her son home.
134
434723
1707
07:16
And even though she didn't have a lot of educational or financial advantages,
135
436454
3777
07:20
she found the best doctor in the country for dealing with diastrophic dwarfism,
136
440255
4024
07:24
and she got Clinton enrolled with him.
137
444303
2142
07:26
And in the course of his childhood,
138
446469
2170
07:28
he had 30 major surgical procedures.
139
448663
2808
07:31
And he spent all this time stuck in the hospital
140
451495
2266
07:33
while he was having those procedures,
141
453785
1793
07:35
as a result of which, he now can walk.
142
455602
2079
07:37
While he was there, they sent tutors around to help him with his schoolwork,
143
457705
4460
07:42
and he worked very hard, because there was nothing else to do.
144
462189
2977
07:45
He ended up achieving at a level
145
465190
1551
07:46
that had never before been contemplated by any member of his family.
146
466765
3387
07:50
He was the first one in his family, in fact, to go to college,
147
470557
3096
07:53
where he lived on campus and drove a specially fitted car
148
473677
3140
07:56
that accommodated his unusual body.
149
476841
2947
07:59
And his mother told me the story of coming home one day --
150
479812
3105
08:02
and he went to college nearby --
151
482941
1671
08:04
and she said, "I saw that car, which you can always recognize,
152
484636
2992
08:07
in the parking lot of a bar," she said.
153
487652
3127
08:10
(Laughter)
154
490803
1373
08:12
"And I thought to myself,
155
492200
1738
08:13
'They're six feet tall, he's three feet tall.
156
493962
2637
08:16
Two beers for them is four beers for him.'"
157
496623
2409
08:19
She said, "I knew I couldn't go in there and interrupt him,
158
499056
2810
08:21
but I went home, and I left him eight messages on his cell phone."
159
501890
3378
08:25
She said, "And then I thought,
160
505933
1455
08:27
if someone had said to me, when he was born,
161
507412
2098
08:29
that my future worry would be that he'd go drinking and driving
162
509534
3706
08:33
with his college buddies ..."
163
513264
1493
08:34
(Laughter)
164
514781
1571
08:36
(Applause)
165
516376
6977
08:43
And I said to her,
166
523861
1165
08:45
"What do you think you did that helped him to emerge
167
525050
2472
08:47
as this charming, accomplished, wonderful person?"
168
527546
2849
08:50
And she said, "What did I do?
169
530419
2645
08:53
I loved him, that's all.
170
533088
2058
08:55
Clinton just always had that light in him.
171
535170
3394
08:58
And his father and I were lucky enough to be the first to see it there."
172
538588
4966
09:04
I'm going to quote from another magazine of the '60s.
173
544887
2523
09:07
This one is from 1968 --
174
547434
2636
09:10
"The Atlantic Monthly," voice of liberal America --
175
550094
3407
09:13
written by an important bioethicist.
176
553525
2390
09:15
He said, "There is no reason to feel guilty
177
555939
3897
09:19
about putting a Down's syndrome child away,
178
559860
3555
09:23
whether it is 'put away' in the sense of hidden in a sanitarium
179
563439
4965
09:28
or in a more responsible, lethal sense.
180
568428
2978
09:32
It is sad, yes. Dreadful.
181
572189
2980
09:35
But it carries no guilt.
182
575193
1865
09:37
True guilt arises only from an offense against a person,
183
577082
4131
09:41
and a Down's is not a person."
184
581237
3361
09:45
There's been a lot of ink given to the enormous progress that we've made
185
585838
3779
09:49
in the treatment of gay people.
186
589641
2024
09:51
The fact that our attitude has changed is in the headlines every day.
187
591689
4229
09:55
But we forget how we used to see people who had other differences,
188
595942
4376
10:00
how we used to see people who were disabled,
189
600342
2299
10:02
how inhuman we held people to be.
190
602665
2857
10:05
And the change that's been accomplished there,
191
605546
2207
10:07
which is almost equally radical,
192
607777
1560
10:09
is one that we pay not very much attention to.
193
609361
3021
10:12
One of the families I interviewed, Tom and Karen Robards,
194
612406
3698
10:16
were taken aback when, as young and successful New Yorkers,
195
616128
3532
10:19
their first child was diagnosed with Down syndrome.
196
619684
2951
10:23
They thought the educational opportunities for him were not what they should be,
197
623316
4150
10:27
and so they decided they would build a little center --
198
627490
3829
10:31
two classrooms that they started with a few other parents --
199
631343
3577
10:34
to educate kids with DS.
200
634944
2318
10:37
And over the years, that center grew into something called the Cooke Center,
201
637286
4060
10:41
where there are now thousands upon thousands of children
202
641370
2698
10:44
with intellectual disabilities
203
644092
1649
10:45
who are being taught.
204
645765
1515
10:47
In the time since that "Atlantic Monthly" story ran,
205
647304
3244
10:50
the life expectancy for people with Down syndrome has tripled.
206
650572
4523
10:55
The experience of Down syndrome people includes those who are actors,
207
655119
4545
10:59
those who are writers, some who are able to live fully independently in adulthood.
208
659688
5002
11:05
The Robards had a lot to do with that.
209
665579
1840
11:07
And I said, "Do you regret it?
210
667443
1453
11:08
Do you wish your child didn't have Down syndrome?
211
668920
2495
11:11
Do you wish you'd never heard of it?"
212
671439
1825
11:13
And interestingly, his father said,
213
673288
2654
11:15
"Well, for David, our son, I regret it,
214
675966
2140
11:18
because for David, it's a difficult way to be in the world,
215
678130
3468
11:21
and I'd like to give David an easier life.
216
681622
2805
11:24
But I think if we lost everyone with Down syndrome,
217
684451
2807
11:27
it would be a catastrophic loss."
218
687282
2361
11:29
And Karen Robards said to me, "I'm with Tom.
219
689667
3265
11:32
For David, I would cure it in an instant, to give him an easier life.
220
692956
3862
11:36
But speaking for myself --
221
696842
1911
11:38
well, I would never have believed 23 years ago when he was born
222
698777
3477
11:42
that I could come to such a point.
223
702278
2078
11:44
Speaking for myself, it's made me so much better and so much kinder
224
704380
4311
11:48
and so much more purposeful in my whole life that, speaking for myself,
225
708715
4906
11:53
I wouldn't give it up for anything in the world."
226
713645
3476
11:58
We live at a point when social acceptance for these and many other conditions
227
718422
4018
12:02
is on the up and up.
228
722464
1623
12:04
And yet we also live at the moment
229
724111
2061
12:06
when our ability to eliminate those conditions
230
726196
2631
12:08
has reached a height we never imagined before.
231
728851
2825
12:11
Most deaf infants born in the United States now
232
731700
2848
12:14
will receive cochlear implants,
233
734572
1976
12:16
which are put into the brain and connected to a receiver,
234
736572
4708
12:21
and which allow them to acquire a facsimile of hearing
235
741304
2984
12:24
and to use oral speech.
236
744312
2123
12:26
A compound that has been tested in mice, BMN-111,
237
746459
4241
12:30
is useful in preventing the action of the achondroplasia gene.
238
750724
4573
12:35
Achondroplasia is the most common form of dwarfism,
239
755321
2955
12:38
and mice who have been given that substance
240
758300
2088
12:40
and who have the achondroplasia gene
241
760412
1844
12:42
grow to full size.
242
762280
1713
12:44
Testing in humans is around the corner.
243
764017
2920
12:46
There are blood tests which are making progress
244
766961
2453
12:49
that would pick up Down syndrome more clearly and earlier in pregnancies
245
769438
4056
12:53
than ever before,
246
773518
1155
12:54
making it easier and easier for people to eliminate those pregnancies,
247
774697
4890
12:59
or to terminate them.
248
779611
1323
13:00
So we have both social progress and medical progress.
249
780958
4955
13:05
And I believe in both of them.
250
785937
1582
13:07
I believe the social progress is fantastic and meaningful and wonderful,
251
787543
4291
13:11
and I think the same thing about the medical progress.
252
791858
2958
13:14
But I think it's a tragedy when one of them doesn't see the other.
253
794840
4339
13:19
And when I see the way they're intersecting
254
799203
2048
13:21
in conditions like the three I've just described,
255
801275
2376
13:23
I sometimes think it's like those moments in grand opera
256
803675
3621
13:27
when the hero realizes he loves the heroine
257
807320
2557
13:29
at the exact moment that she lies expiring on a divan.
258
809901
4264
13:34
(Laughter)
259
814189
2375
13:37
We have to think about how we feel about cures altogether.
260
817401
3475
13:40
And a lot of the time the question of parenthood is:
261
820900
2812
13:43
What do we validate in our children,
262
823736
1751
13:45
and what do we cure in them?
263
825511
1805
13:47
Jim Sinclair, a prominent autism activist, said,
264
827340
4147
13:51
"When parents say, 'I wish my child did not have autism,'
265
831511
4577
13:56
what they're really saying is, 'I wish the child I have did not exist
266
836112
4811
14:00
and I had a different, nonautistic child instead.'
267
840947
3352
14:04
Read that again. This is what we hear when you mourn over our existence.
268
844858
5106
14:09
This is what we hear when you pray for a cure:
269
849988
3025
14:13
that your fondest wish for us is that someday we will cease to be,
270
853037
4402
14:17
and strangers you can love will move in behind our faces."
271
857463
4619
14:23
It's a very extreme point of view,
272
863241
2469
14:25
but it points to the reality that people engage with the life they have
273
865734
4313
14:30
and they don't want to be cured or changed or eliminated.
274
870071
4541
14:34
They want to be whoever it is that they've come to be.
275
874636
3062
14:38
One of the families I interviewed for this project
276
878245
3611
14:41
was the family of Dylan Klebold,
277
881880
1727
14:43
who was one of the perpetrators of the Columbine massacre.
278
883631
3385
14:47
It took a long time to persuade them to talk to me,
279
887040
2641
14:49
and once they agreed, they were so full of their story
280
889705
2624
14:52
that they couldn't stop telling it,
281
892353
1696
14:54
and the first weekend I spent with them, the first of many,
282
894073
2799
14:56
I recorded more than 20 hours of conversation.
283
896896
2986
14:59
And on Sunday night, we were all exhausted.
284
899906
2022
15:01
We were sitting in the kitchen. Sue Klebold was fixing dinner.
285
901952
3240
15:05
And I said, "If Dylan were here now,
286
905216
2650
15:07
do you have a sense of what you'd want to ask him?"
287
907890
2647
15:10
And his father said, "I sure do.
288
910561
2204
15:12
I'd want to ask him what the hell he thought he was doing."
289
912789
2845
15:16
And Sue looked at the floor, and she thought for a minute.
290
916068
3258
15:20
And then she looked back up and said,
291
920286
2345
15:22
"I would ask him to forgive me for being his mother
292
922655
3633
15:26
and never knowing what was going on inside his head."
293
926312
3081
15:30
When I had dinner with her a couple of years later --
294
930586
2945
15:33
one of many dinners that we had together --
295
933555
2213
15:35
she said, "You know, when it first happened,
296
935792
2856
15:38
I used to wish that I had never married, that I had never had children.
297
938672
4059
15:42
If I hadn't gone to Ohio State and crossed paths with Tom,
298
942755
3427
15:46
this child wouldn't have existed,
299
946206
1697
15:47
and this terrible thing wouldn't have happened.
300
947927
2208
15:50
But I've come to feel that I love the children I had so much
301
950159
4029
15:54
that I don't want to imagine a life without them.
302
954212
2707
15:57
I recognize the pain they caused to others,
303
957563
2847
16:00
for which there can be no forgiveness,
304
960434
2114
16:02
but the pain they caused to me, there is," she said.
305
962572
3559
16:06
"So while I recognize that it would have been better for the world
306
966155
3588
16:09
if Dylan had never been born,
307
969767
2546
16:12
I've decided that it would not have been better for me."
308
972337
4195
16:18
I thought it was surprising
309
978420
1518
16:19
how all of these families had all of these children
310
979962
2652
16:22
with all of these problems,
311
982638
1466
16:24
problems that they mostly would have done anything to avoid,
312
984128
3052
16:27
and that they had all found so much meaning in that experience of parenting.
313
987204
3890
16:31
And then I thought, all of us who have children
314
991118
3123
16:34
love the children we have, with their flaws.
315
994265
2911
16:37
If some glorious angel suddenly descended through my living-room ceiling
316
997200
3929
16:41
and offered to take away the children I have
317
1001153
2202
16:43
and give me other, better children --
318
1003379
2329
16:45
more polite, funnier, nicer, smarter --
319
1005732
3446
16:49
(Laughter)
320
1009202
1209
16:50
I would cling to the children I have and pray away that atrocious spectacle.
321
1010435
4594
16:55
And ultimately,
322
1015053
1369
16:56
I feel that in the same way that we test flame-retardant pajamas in an inferno
323
1016446
4485
17:00
to ensure they won't catch fire when our child reaches across the stove,
324
1020955
4185
17:05
so these stories of families negotiating these extreme differences
325
1025164
4013
17:09
reflect on the universal experience of parenting,
326
1029201
2663
17:11
which is always that sometimes, you look at your child, and you think,
327
1031888
4520
17:16
"Where did you come from?"
328
1036432
1936
17:18
(Laughter)
329
1038392
2524
17:20
It turns out that while each of these individual differences is siloed --
330
1040940
4713
17:25
there are only so many families dealing with schizophrenia,
331
1045677
2785
17:28
only so many families of children who are transgender,
332
1048486
2598
17:31
only so many families of prodigies --
333
1051108
1862
17:32
who also face similar challenges in many ways --
334
1052994
2489
17:35
there are only so many families in each of those categories.
335
1055507
2847
17:38
But if you start to think
336
1058378
1235
17:39
that the experience of negotiating difference within your family
337
1059637
3508
17:43
is what people are addressing,
338
1063169
2079
17:45
then you discover that it's a nearly universal phenomenon.
339
1065272
3321
17:48
Ironically, it turns out,
340
1068617
1630
17:50
that it's our differences and our negotiation of difference
341
1070271
3408
17:53
that unite us.
342
1073703
1254
17:55
I decided to have children while I was working on this project.
343
1075832
5000
18:01
And many people were astonished and said,
344
1081292
3198
18:04
"But how can you decide to have children
345
1084514
1999
18:06
in the midst of studying everything that can go wrong?"
346
1086537
2981
18:10
And I said, "I'm not studying everything that can go wrong.
347
1090550
3106
18:13
What I'm studying is how much love there can be,
348
1093680
3112
18:16
even when everything appears to be going wrong."
349
1096816
4040
18:21
I thought a lot about the mother of one disabled child I had seen,
350
1101499
5541
18:27
a severely disabled child who died through caregiver neglect.
351
1107064
3586
18:30
And when his ashes were interred, his mother said,
352
1110674
3024
18:34
"I pray here for forgiveness for having been twice robbed:
353
1114745
6911
18:41
once of the child I wanted,
354
1121680
2712
18:44
and once of the son I loved."
355
1124416
2604
18:47
And I figured it was possible, then, for anyone to love any child,
356
1127577
4530
18:52
if they had the effective will to do so.
357
1132131
2338
18:55
So, my husband is the biological father of two children
358
1135003
4963
18:59
with some lesbian friends in Minneapolis.
359
1139990
2105
19:03
I had a close friend from college who'd gone through a divorce
360
1143293
3509
19:06
and wanted to have children.
361
1146826
1664
19:08
And so she and I have a daughter,
362
1148514
1713
19:10
and mother and daughter live in Texas.
363
1150251
2215
19:12
And my husband and I have a son who lives with us all the time,
364
1152490
3348
19:15
of whom I am the biological father,
365
1155862
2360
19:18
and our surrogate for the pregnancy was Laura,
366
1158246
3724
19:21
the lesbian mother of Oliver and Lucy in Minneapolis.
367
1161994
2777
19:24
(Laughter)
368
1164795
1427
19:26
So --
369
1166246
1159
19:27
(Applause)
370
1167429
6702
19:34
The shorthand is: five parents of four children in three states.
371
1174155
4375
19:38
(Laughter)
372
1178554
1094
19:39
And there are people who think that the existence of my family
373
1179672
3008
19:42
somehow undermines or weakens or damages their family.
374
1182704
4489
19:47
And there are people who think that families like mine
375
1187217
3530
19:50
shouldn't be allowed to exist.
376
1190771
1654
19:52
And I don't accept subtractive models of love,
377
1192449
3900
19:56
only additive ones.
378
1196373
1379
19:58
And I believe that in the same way that we need species diversity
379
1198137
3503
20:01
to ensure that the planet can go on,
380
1201664
2425
20:04
so we need this diversity of affection and diversity of family
381
1204113
4277
20:08
in order to strengthen the ecosphere of kindness.
382
1208414
3279
20:13
The day after our son was born,
383
1213082
2398
20:15
the pediatrician came into the hospital room
384
1215504
2439
20:17
and said she was concerned.
385
1217967
1891
20:19
He wasn't extending his legs appropriately.
386
1219882
3118
20:23
She said that might mean that he had brain damage.
387
1223024
2537
20:25
Insofar as he was extending them, he was doing so asymmetrically,
388
1225585
3731
20:29
which she thought could mean that there was a tumor of some kind in action.
389
1229340
3714
20:33
And he had a very large head,
390
1233078
1664
20:34
which she thought might indicate hydrocephalus.
391
1234766
2935
20:37
And as she told me all of these things,
392
1237725
1888
20:39
I felt the very center of my being pouring out onto the floor.
393
1239637
3821
20:43
And I thought, "Here I had been working for years
394
1243482
2448
20:45
on a book about how much meaning people had found
395
1245954
2525
20:48
in the experience of parenting children who were disabled,
396
1248503
3633
20:52
and I didn't want to join their number
397
1252160
3478
20:55
because what I was encountering was an idea of illness."
398
1255662
2774
20:58
And like all parents since the dawn of time,
399
1258460
2742
21:01
I wanted to protect my child from illness.
400
1261226
2977
21:04
And I wanted, also, to protect myself from illness.
401
1264227
3243
21:07
And yet, I knew from the work I had done
402
1267494
2747
21:10
that if he had any of the things we were about to start testing for,
403
1270265
3816
21:14
that those would ultimately be his identity,
404
1274105
2963
21:17
and if they were his identity, they would become my identity,
405
1277092
4039
21:21
that that illness was going to take a very different shape as it unfolded.
406
1281155
4268
21:25
We took him to the MRI machine, we took him to the CAT scanner,
407
1285447
3129
21:28
we took this day-old child and gave him over for an arterial blood draw.
408
1288600
3784
21:32
We felt helpless.
409
1292408
1261
21:33
And at the end of five hours,
410
1293693
1657
21:35
they said that his brain was completely clear
411
1295374
2212
21:37
and that he was by then extending his legs correctly.
412
1297610
2778
21:40
And when I asked the pediatrician what had been going on,
413
1300412
3000
21:43
she said she thought in the morning, he had probably had a cramp.
414
1303436
4160
21:47
(Laughter)
415
1307620
3451
21:51
But I thought --
416
1311095
1262
21:52
(Laughter)
417
1312381
3925
21:56
I thought how my mother was right.
418
1316330
2599
21:58
I thought, "The love you have for your children
419
1318953
3472
22:02
is unlike any other feeling in the world.
420
1322449
3362
22:05
And until you have children, you don't know what it feels like.
421
1325835
4673
22:12
I think children had ensnared me
422
1332158
2136
22:14
the moment I connected fatherhood with loss.
423
1334318
3002
22:18
But I'm not sure I would have noticed that
424
1338138
2034
22:20
if I hadn't been so in the thick of this research project of mine.
425
1340196
4344
22:25
I'd encountered so much strange love,
426
1345462
3116
22:28
and I fell very naturally into its bewitching patterns.
427
1348602
3721
22:32
And I saw how splendor can illuminate even the most abject vulnerabilities.
428
1352347
5873
22:39
During these 10 years, I had witnessed and learned
429
1359206
3782
22:43
the terrifying joy of unbearable responsibility,
430
1363012
3552
22:46
and I had come to see how it conquers everything else.
431
1366588
3088
22:50
And while I had sometimes thought the parents I was interviewing were fools,
432
1370264
4049
22:54
enslaving themselves to a lifetime's journey with their thankless children
433
1374337
4997
22:59
and trying to breed identity out of misery,
434
1379358
3158
23:02
I realized that day that my research had built me a plank
435
1382540
4623
23:07
and that I was ready to join them on their ship.
436
1387187
2514
23:10
Thank you.
437
1390581
1208
23:11
(Applause and cheers)
438
1391813
6979
23:20
Thank you.
439
1400096
1150
About this website

This site will introduce you to YouTube videos that are useful for learning English. You will see English lessons taught by top-notch teachers from around the world. Double-click on the English subtitles displayed on each video page to play the video from there. The subtitles scroll in sync with the video playback. If you have any comments or requests, please contact us using this contact form.

https://forms.gle/WvT1wiN1qDtmnspy7