1
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"Even in purely non-religious terms,

2
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homosexuality represents a misuse of the sexual faculty.

3
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It is a pathetic little second-rate substitute for reality --

4
00:00:15,285 --> 00:00:17,685
a pitiable flight from life.

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As such, it deserves no compassion,

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it deserves no treatment

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00:00:24,070 --> 00:00:26,837
as minority martyrdom,

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and it deserves not to be deemed anything but a pernicious sickness."

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That's from Time magazine in 1966, when I was three years old.

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And last year, the president of the United States

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came out in favor of gay marriage.

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(Applause)

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And my question is, how did we get from there to here?

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How did an illness become an identity?

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When I was perhaps six years old,

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I went to a shoe store with my mother and my brother.

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And at the end of buying our shoes,

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the salesman said to us that we could each have a balloon to take home.

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My brother wanted a red balloon, and I wanted a pink balloon.

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My mother said that she thought I'd really rather have a blue balloon.

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But I said that I definitely wanted the pink one.

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And she reminded me that my favorite color was blue.

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The fact that my favorite color now is blue, but I'm still gay --

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(Laughter) --

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is evidence of both my mother's influence and its limits.

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(Laughter)

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(Applause)

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When I was little, my mother used to say,

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"The love you have for your children is like no other feeling in the world.

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And until you have children, you don't know what it's like."

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And when I was little, I took it as the greatest compliment in the world

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that she would say that about parenting my brother and me.

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And when I was an adolescent, I thought

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that I'm gay, and so I probably can't have a family.

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And when she said it, it made me anxious.

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And after I came out of the closet,

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when she continued to say it, it made me furious.

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I said, "I'm gay. That's not the direction that I'm headed in.

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And I want you to stop saying that."

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About 20 years ago, I was asked by my editors at The New York Times Magazine

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to write a piece about deaf culture.

42
00:02:42,511 --> 00:02:44,348
And I was rather taken aback.

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I had thought of deafness entirely as an illness.

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Those poor people, they couldn't hear.

45
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They lacked hearing, and what could we do for them?

46
00:02:51,043 --> 00:02:53,160
And then I went out into the deaf world.

47
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I went to deaf clubs.

48
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I saw performances of deaf theater and of deaf poetry.

49
00:02:59,471 --> 00:03:05,682
I even went to the Miss Deaf America contest in Nashville, Tennessee

50
00:03:05,682 --> 00:03:09,526
where people complained about that slurry Southern signing.

51
00:03:09,526 --> 00:03:13,782
(Laughter)

52
00:03:13,782 --> 00:03:17,709
And as I plunged deeper and deeper into the deaf world,

53
00:03:17,709 --> 00:03:20,715
I become convinced that deafness was a culture

54
00:03:20,715 --> 00:03:23,077
and that the people in the deaf world who said,

55
00:03:23,077 --> 00:03:26,444
"We don't lack hearing, we have membership in a culture,"

56
00:03:26,444 --> 00:03:29,021
were saying something that was viable.

57
00:03:29,021 --> 00:03:30,526
It wasn't my culture,

58
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and I didn't particularly want to rush off and join it,

59
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but I appreciated that it was a culture

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and that for the people who were members of it,

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it felt as valuable as Latino culture or gay culture or Jewish culture.

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It felt as valid perhaps even as American culture.

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00:03:49,499 --> 00:03:52,913
Then a friend of a friend of mine had a daughter who was a dwarf.

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And when her daughter was born,

65
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she suddenly found herself confronting questions

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00:03:56,723 --> 00:03:59,510
that now began to seem quite resonant to me.

67
00:03:59,510 --> 00:04:03,377
She was facing the question of what to do with this child.

68
00:04:03,377 --> 00:04:06,837
Should she say, "You're just like everyone else but a little bit shorter?"

69
00:04:06,837 --> 00:04:10,052
Or should she try to construct some kind of dwarf identity,

70
00:04:10,052 --> 00:04:12,599
get involved in the Little People of America,

71
00:04:12,599 --> 00:04:15,392
become aware of what was happening for dwarfs?

72
00:04:15,392 --> 00:04:16,993
And I suddenly thought,

73
00:04:16,993 --> 00:04:19,212
most deaf children are born to hearing parents.

74
00:04:19,212 --> 00:04:22,011
Those hearing parents tend to try to cure them.

75
00:04:22,011 --> 00:04:26,177
Those deaf people discover community somehow in adolescence.

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00:04:26,177 --> 00:04:28,526
Most gay people are born to straight parents.

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Those straight parents often want them to function

78
00:04:30,974 --> 00:04:33,244
in what they think of as the mainstream world,

79
00:04:33,244 --> 00:04:36,848
and those gay people have to discover identity later on.

80
00:04:36,848 --> 00:04:38,464
And here was this friend of mine

81
00:04:38,464 --> 00:04:41,793
looking at these questions of identity with her dwarf daughter.

82
00:04:41,793 --> 00:04:43,569
And I thought, there it is again:

83
00:04:43,569 --> 00:04:46,135
A family that perceives itself to be normal

84
00:04:46,135 --> 00:04:48,505
with a child who seems to be extraordinary.

85
00:04:48,505 --> 00:04:53,017
And I hatched the idea that there are really two kinds of identity.

86
00:04:53,017 --> 00:04:54,941
There are vertical identities,

87
00:04:54,941 --> 00:04:57,923
which are passed down generationally from parent to child.

88
00:04:57,923 --> 00:05:03,526
Those are things like ethnicity, frequently nationality, language, often religion.

89
00:05:03,526 --> 00:05:08,004
Those are things you have in common with your parents and with your children.

90
00:05:08,004 --> 00:05:10,277
And while some of them can be difficult,

91
00:05:10,277 --> 00:05:12,471
there's no attempt to cure them.

92
00:05:12,471 --> 00:05:15,883
You can argue that it's harder in the United States --

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00:05:15,883 --> 00:05:17,857
our current presidency notwithstanding --

94
00:05:17,857 --> 00:05:19,690
to be a person of color.

95
00:05:19,690 --> 00:05:22,389
And yet, we have nobody who is trying to ensure

96
00:05:22,389 --> 00:05:26,277
that the next generation of children born to African-Americans and Asians

97
00:05:26,277 --> 00:05:29,666
come out with creamy skin and yellow hair.

98
00:05:29,666 --> 00:05:33,943
There are these other identities which you have to learn from a peer group.

99
00:05:33,943 --> 00:05:36,241
And I call them horizontal identities,

100
00:05:36,241 --> 00:05:39,136
because the peer group is the horizontal experience.

101
00:05:39,136 --> 00:05:41,704
These are identities that are alien to your parents

102
00:05:41,704 --> 00:05:45,889
and that you have to discover when you get to see them in peers.

103
00:05:45,889 --> 00:05:48,974
And those identities, those horizontal identities,

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00:05:48,974 --> 00:05:52,690
people have almost always tried to cure.

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And I wanted to look at what the process is

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00:05:55,358 --> 00:05:57,575
through which people who have those identities

107
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come to a good relationship with them.

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And it seemed to me that there were three levels of acceptance

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that needed to take place.

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There's self-acceptance, there's family acceptance, and there's social acceptance.

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00:06:11,544 --> 00:06:13,491
And they don't always coincide.

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00:06:13,491 --> 00:06:17,627
And a lot of the time, people who have these conditions are very angry

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00:06:17,627 --> 00:06:20,691
because they feel as though their parents don't love them,

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when what actually has happened is that their parents don't accept them.

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Love is something that ideally is there unconditionally

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throughout the relationship between a parent and a child.

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But acceptance is something that takes time.

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It always takes time.

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One of the dwarfs I got to know was a guy named Clinton Brown.

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When he was born, he was diagnosed with diastrophic dwarfism,

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a very disabling condition,

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and his parents were told that he would never walk, he would never talk,

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he would have no intellectual capacity,

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and he would probably not even recognize them.

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And it was suggested to them that they leave him at the hospital

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so that he could die there quietly.

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And his mother said she wasn't going to do it.

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And she took her son home.

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And even though she didn't have a lot of educational or financial advantages,

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she found the best doctor in the country

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for dealing with diastrophic dwarfism,

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and she got Clinton enrolled with him.

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And in the course of his childhood,

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he had 30 major surgical procedures.

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And he spent all this time stuck in the hospital

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while he was having those procedures,

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as a result of which he now can walk.

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And while he was there, they sent tutors around to help him with his school work.

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And he worked very hard because there was nothing else to do.

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And he ended up achieving at a level

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that had never before been contemplated by any member of his family.

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He was the first one in his family, in fact, to go to college,

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where he lived on campus and drove a specially-fitted car

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that accommodated his unusual body.

145
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And his mother told me this story of coming home one day --

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and he went to college nearby --

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00:07:52,336 --> 00:07:55,423
and she said, "I saw that car, which you can always recognize,

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in the parking lot of a bar," she said. (Laughter)

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"And I thought to myself, they're six feet tall, he's three feet tall.

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Two beers for them is four beers for him."

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She said, "I knew I couldn't go in there and interrupt him,

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but I went home, and I left him eight messages on his cell phone."

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She said, "And then I thought,

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if someone had said to me when he was born

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that my future worry would be that he'd go drinking and driving with his college buddies -- "

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(Applause)

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00:08:31,537 --> 00:08:33,576
And I said to her, "What do you think you did

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that helped him to emerge as this charming, accomplished, wonderful person?"

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00:08:38,036 --> 00:08:42,723
And she said, "What did I do? I loved him, that's all.

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Clinton just always had that light in him.

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And his father and I were lucky enough to be the first to see it there."

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00:08:52,272 --> 00:08:55,310
I'm going to quote from another magazine of the '60s.

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00:08:55,310 --> 00:09:01,004
This one is from 1968 -- The Atlantic Monthly, voice of liberal America --

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00:09:01,004 --> 00:09:03,808
written by an important bioethicist.

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He said, "There is no reason to feel guilty

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about putting a Down syndrome child away,

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whether it is put away in the sense of hidden in a sanitarium

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or in a more responsible, lethal sense.

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00:09:19,889 --> 00:09:24,837
It is sad, yes -- dreadful. But it carries no guilt.

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True guilt arises only from an offense against a person,

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and a Down's is not a person."

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There's been a lot of ink given to the enormous progress that we've made

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in the treatment of gay people.

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The fact that our attitude has changed is in the headlines every day.

175
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But we forget how we used to see people who had other differences,

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how we used to see people who were disabled,

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how inhuman we held people to be.

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And the change that's been accomplished there,

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which is almost equally radical,

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00:09:57,093 --> 00:09:59,969
is one that we pay not very much attention to.

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One of the families I interviewed, Tom and Karen Robards,

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00:10:03,921 --> 00:10:07,649
were taken aback when, as young and successful New Yorkers,

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00:10:07,649 --> 00:10:11,104
their first child was diagnosed with Down syndrome.

184
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They thought the educational opportunities for him were not what they should be,

185
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and so they decided they would build a little center --

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two classrooms that they started with a few other parents --

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to educate kids with D.S.

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And over the years, that center grew into something called the Cooke Center,

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00:10:29,070 --> 00:10:31,227
where there are now thousands upon thousands

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00:10:31,227 --> 00:10:35,004
of children with intellectual disabilities who are being taught.

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In the time since that Atlantic Monthly story ran,

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the life expectancy for people with Down syndrome has tripled.

193
00:10:42,315 --> 00:10:47,074
The experience of Down syndrome people includes those who are actors,

194
00:10:47,074 --> 00:10:53,127
those who are writers, some who are able to live fully independently in adulthood.

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00:10:53,127 --> 00:10:55,002
The Robards had a lot to do with that.

196
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And I said, "Do you regret it?

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Do you wish your child didn't have Down syndrome?

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00:10:59,139 --> 00:11:00,988
Do you wish you'd never heard of it?"

199
00:11:00,988 --> 00:11:03,355
And interestingly his father said,

200
00:11:03,355 --> 00:11:05,942
"Well, for David, our son, I regret it,

201
00:11:05,942 --> 00:11:09,322
because for David, it's a difficult way to be in the world,

202
00:11:09,322 --> 00:11:12,070
and I'd like to give David an easier life.

203
00:11:12,070 --> 00:11:17,170
But I think if we lost everyone with Down syndrome, it would be a catastrophic loss."

204
00:11:17,170 --> 00:11:20,601
And Karen Robards said to me, "I'm with Tom.

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For David, I would cure it in an instant to give him an easier life.

206
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But speaking for myself -- well, I would never have believed 23 years ago when he was born

207
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that I could come to such a point --

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speaking for myself, it's made me so much better and so much kinder

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and so much more purposeful in my whole life,

210
00:11:39,370 --> 00:11:45,779
that speaking for myself, I wouldn't give it up for anything in the world."

211
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We live at a point when social acceptance for these and many other conditions

212
00:11:50,164 --> 00:11:51,902
is on the up and up.

213
00:11:51,902 --> 00:11:53,738
And yet we also live at the moment

214
00:11:53,738 --> 00:11:56,629
when our ability to eliminate those conditions

215
00:11:56,629 --> 00:11:59,237
has reached a height we never imagined before.

216
00:11:59,237 --> 00:12:02,381
Most deaf infants born in the United States now

217
00:12:02,396 --> 00:12:04,189
will receive Cochlear implants,

218
00:12:04,189 --> 00:12:09,004
which are put into the brain and connected to a receiver,

219
00:12:09,004 --> 00:12:14,022
and which allow them to acquire a facsimile of hearing and to use oral speech.

220
00:12:14,022 --> 00:12:18,321
A compound that has been tested in mice, BMN-111,

221
00:12:18,321 --> 00:12:23,374
is useful in preventing the action of the achondroplasia gene.

222
00:12:23,374 --> 00:12:26,119
Achondroplasia is the most common form of dwarfism,

223
00:12:26,119 --> 00:12:30,086
and mice who have been given that substance and who have the achondroplasia gene,

224
00:12:30,086 --> 00:12:32,004
grow to full size.

225
00:12:32,004 --> 00:12:34,555
Testing in humans is around the corner.

226
00:12:34,555 --> 00:12:36,811
There are blood tests which are making progress

227
00:12:36,811 --> 00:12:42,306
that would pick up Down syndrome more clearly and earlier in pregnancies than ever before,

228
00:12:42,306 --> 00:12:47,535
making it easier and easier for people to eliminate those pregnancies,

229
00:12:47,550 --> 00:12:48,870
or to terminate them.

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00:12:48,870 --> 00:12:53,537
And so we have both social progress and medical progress.

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00:12:53,537 --> 00:12:55,389
And I believe in both of them.

232
00:12:55,389 --> 00:12:59,444
I believe the social progress is fantastic and meaningful and wonderful,

233
00:12:59,444 --> 00:13:02,540
and I think the same thing about the medical progress.

234
00:13:02,540 --> 00:13:06,903
But I think it's a tragedy when one of them doesn't see the other.

235
00:13:06,903 --> 00:13:08,974
And when I see the way they're intersecting

236
00:13:08,974 --> 00:13:11,188
in conditions like the three I've just described,

237
00:13:11,188 --> 00:13:14,838
I sometimes think it's like those moments in grand opera

238
00:13:14,838 --> 00:13:17,442
when the hero realizes he loves the heroine

239
00:13:17,442 --> 00:13:21,889
at the exact moment that she lies expiring on a divan.

240
00:13:21,889 --> 00:13:24,688
(Laughter)

241
00:13:24,688 --> 00:13:28,570
We have to think about how we feel about cures altogether.

242
00:13:28,570 --> 00:13:31,436
And a lot of the time the question of parenthood is,

243
00:13:31,436 --> 00:13:33,288
what do we validate in our children,

244
00:13:33,288 --> 00:13:35,040
and what do we cure in them?

245
00:13:35,040 --> 00:13:39,211
Jim Sinclair, a prominent autism activist, said,

246
00:13:39,211 --> 00:13:43,865
"When parents say 'I wish my child did not have autism,'

247
00:13:43,865 --> 00:13:48,724
what they're really saying is 'I wish the child I have did not exist

248
00:13:48,724 --> 00:13:52,743
and I had a different, non-autistic child instead.'

249
00:13:52,743 --> 00:13:57,535
Read that again. This is what we hear when you mourn over our existence.

250
00:13:57,535 --> 00:14:00,737
This is what we hear when you pray for a cure --

251
00:14:00,737 --> 00:14:02,642
that your fondest wish for us

252
00:14:02,642 --> 00:14:05,021
is that someday we will cease to be

253
00:14:05,021 --> 00:14:10,576
and strangers you can love will move in behind our faces."

254
00:14:10,576 --> 00:14:13,642
It's a very extreme point of view,

255
00:14:13,642 --> 00:14:17,771
but it points to the reality that people engage with the life they have

256
00:14:17,771 --> 00:14:22,336
and they don't want to be cured or changed or eliminated.

257
00:14:22,336 --> 00:14:25,556
They want to be whoever it is that they've come to be.

258
00:14:25,556 --> 00:14:29,356
One of the families I interviewed for this project

259
00:14:29,356 --> 00:14:34,610
was the family of Dylan Klebold who was one of the perpetrators of the Columbine massacre.

260
00:14:34,610 --> 00:14:37,405
It took a long time to persuade them to talk to me,

261
00:14:37,405 --> 00:14:40,169
and once they agreed, they were so full of their story

262
00:14:40,169 --> 00:14:41,868
that they couldn't stop telling it.

263
00:14:41,868 --> 00:14:44,485
And the first weekend I spent with them -- the first of many --

264
00:14:44,485 --> 00:14:47,606
I recorded more than 20 hours of conversation.

265
00:14:47,606 --> 00:14:49,869
And on Sunday night, we were all exhausted.

266
00:14:49,869 --> 00:14:52,755
We were sitting in the kitchen. Sue Klebold was fixing dinner.

267
00:14:52,755 --> 00:14:55,276
And I said, "If Dylan were here now,

268
00:14:55,276 --> 00:14:58,121
do you have a sense of what you'd want to ask him?"

269
00:14:58,121 --> 00:15:00,489
And his father said, "I sure do.

270
00:15:00,489 --> 00:15:04,038
I'd want to ask him what the hell he thought he was doing."

271
00:15:04,038 --> 00:15:07,676
And Sue looked at the floor, and she thought for a minute.

272
00:15:07,676 --> 00:15:09,855
And then she looked back up and said,

273
00:15:09,855 --> 00:15:13,918
"I would ask him to forgive me for being his mother

274
00:15:13,918 --> 00:15:18,342
and never knowing what was going on inside his head."

275
00:15:18,342 --> 00:15:21,310
When I had dinner with her a couple of years later --

276
00:15:21,310 --> 00:15:23,237
one of many dinners that we had together --

277
00:15:23,237 --> 00:15:26,647
she said, "You know, when it first happened,

278
00:15:26,647 --> 00:15:30,455
I used to wish that I had never married, that I had never had children.

279
00:15:30,455 --> 00:15:33,947
If I hadn't gone to Ohio State and crossed paths with Tom,

280
00:15:33,947 --> 00:15:37,589
this child wouldn't have existed and this terrible thing wouldn't have happened.

281
00:15:37,589 --> 00:15:42,104
But I've come to feel that I love the children I had so much

282
00:15:42,104 --> 00:15:45,407
that I don't want to imagine a life without them.

283
00:15:45,407 --> 00:15:50,336
I recognize the pain they caused to others, for which there can be no forgiveness,

284
00:15:50,336 --> 00:15:53,800
but the pain they caused to me, there is," she said.

285
00:15:53,800 --> 00:15:57,592
"So while I recognize that it would have been better for the world

286
00:15:57,592 --> 00:16:00,102
if Dylan had never been born,

287
00:16:00,102 --> 00:16:05,584
I've decided that it would not have been better for me."

288
00:16:05,584 --> 00:16:12,068
I thought it was surprising how all of these families had all of these children with all of these problems,

289
00:16:12,068 --> 00:16:15,101
problems that they mostly would have done anything to avoid,

290
00:16:15,101 --> 00:16:18,920
and that they had all found so much meaning in that experience of parenting.

291
00:16:18,920 --> 00:16:22,121
And then I thought, all of us who have children

292
00:16:22,121 --> 00:16:24,813
love the children we have, with their flaws.

293
00:16:24,813 --> 00:16:29,069
If some glorious angel suddenly descended through my living room ceiling

294
00:16:29,069 --> 00:16:31,279
and offered to take away the children I have

295
00:16:31,279 --> 00:16:37,873
and give me other, better children -- more polite, funnier, nicer, smarter --

296
00:16:37,873 --> 00:16:42,978
I would cling to the children I have and pray away that atrocious spectacle.

297
00:16:42,978 --> 00:16:44,970
And ultimately I feel

298
00:16:44,970 --> 00:16:48,548
that in the same way that we test flame-retardant pajamas in an inferno

299
00:16:48,548 --> 00:16:53,020
to ensure they won't catch fire when our child reaches across the stove,

300
00:16:53,020 --> 00:16:57,088
so these stories of families negotiating these extreme differences

301
00:16:57,088 --> 00:16:59,769
reflect on the universal experience of parenting,

302
00:16:59,769 --> 00:17:03,903
which is always that sometimes you look at your child and you think,

303
00:17:03,903 --> 00:17:06,092
where did you come from?

304
00:17:06,092 --> 00:17:08,546
(Laughter)

305
00:17:08,546 --> 00:17:13,521
It turns out that while each of these individual differences is siloed --

306
00:17:13,521 --> 00:17:16,066
there are only so many families dealing with schizophrenia,

307
00:17:16,066 --> 00:17:18,703
there are only so many families of children who are transgender,

308
00:17:18,703 --> 00:17:20,897
there are only so many families of prodigies --

309
00:17:20,897 --> 00:17:23,181
who also face similar challenges in many ways --

310
00:17:23,181 --> 00:17:25,871
there are only so many families in each of those categories --

311
00:17:25,871 --> 00:17:27,303
but if you start to think

312
00:17:27,303 --> 00:17:30,869
that the experience of negotiating difference within your family

313
00:17:30,869 --> 00:17:32,899
is what people are addressing,

314
00:17:32,899 --> 00:17:36,636
then you discover that it's a nearly universal phenomenon.

315
00:17:36,636 --> 00:17:41,271
Ironically, it turns out, that it's our differences, and our negotiation of difference,

316
00:17:41,271 --> 00:17:43,699
that unite us.

317
00:17:43,699 --> 00:17:49,013
I decided to have children while I was working on this project.

318
00:17:49,013 --> 00:17:52,129
And many people were astonished and said,

319
00:17:52,129 --> 00:17:53,977
"But how can you decide to have children

320
00:17:53,977 --> 00:17:58,083
in the midst of studying everything that can go wrong?"

321
00:17:58,083 --> 00:18:01,313
And I said, "I'm not studying everything that can go wrong.

322
00:18:01,313 --> 00:18:04,404
What I'm studying is how much love there can be,

323
00:18:04,404 --> 00:18:09,129
even when everything appears to be going wrong."

324
00:18:09,129 --> 00:18:14,764
I thought a lot about the mother of one disabled child I had seen,

325
00:18:14,764 --> 00:18:18,536
a severely disabled child who died through caregiver neglect.

326
00:18:18,536 --> 00:18:21,346
And when his ashes were interred, his mother said,

327
00:18:21,346 --> 00:18:29,380
"I pray here for forgiveness for having been twice robbed,

328
00:18:29,380 --> 00:18:35,436
once of the child I wanted and once of the son I loved."

329
00:18:35,436 --> 00:18:40,072
And I figured it was possible then for anyone to love any child

330
00:18:40,072 --> 00:18:42,604
if they had the effective will to do so.

331
00:18:42,604 --> 00:18:47,629
So my husband is the biological father of two children

332
00:18:47,629 --> 00:18:50,390
with some lesbian friends in Minneapolis.

333
00:18:50,390 --> 00:18:56,214
I had a close friend from college who'd gone through a divorce and wanted to have children.

334
00:18:56,214 --> 00:18:58,112
And so she and I have a daughter,

335
00:18:58,112 --> 00:19:00,323
and mother and daughter live in Texas.

336
00:19:00,323 --> 00:19:03,562
And my husband and I have a son who lives with us all the time

337
00:19:03,562 --> 00:19:05,946
of whom I am the biological father,

338
00:19:05,946 --> 00:19:09,866
and our surrogate for the pregnancy was Laura,

339
00:19:09,881 --> 00:19:12,929
the lesbian mother of Oliver and Lucy in Minneapolis.

340
00:19:12,929 --> 00:19:21,584
(Applause)

341
00:19:21,584 --> 00:19:27,048
So the shorthand is five parents of four children in three states.

342
00:19:27,048 --> 00:19:30,404
And there are people who think that the existence of my family

343
00:19:30,404 --> 00:19:35,069
somehow undermines or weakens or damages their family.

344
00:19:35,069 --> 00:19:38,697
And there are people who think that families like mine

345
00:19:38,697 --> 00:19:40,381
shouldn't be allowed to exist.

346
00:19:40,381 --> 00:19:46,036
And I don't accept subtractive models of love, only additive ones.

347
00:19:46,036 --> 00:19:49,562
And I believe that in the same way that we need species diversity

348
00:19:49,562 --> 00:19:51,813
to ensure that the planet can go on,

349
00:19:51,813 --> 00:19:56,014
so we need this diversity of affection and diversity of family

350
00:19:56,014 --> 00:20:00,695
in order to strengthen the ecosphere of kindness.

351
00:20:00,695 --> 00:20:03,065
The day after our son was born,

352
00:20:03,065 --> 00:20:07,637
the pediatrician came into the hospital room and said she was concerned.

353
00:20:07,637 --> 00:20:10,770
He wasn't extending his legs appropriately.

354
00:20:10,770 --> 00:20:13,679
She said that might mean that he had brain damage.

355
00:20:13,679 --> 00:20:17,040
In so far as he was extending them, he was doing so asymmetrically,

356
00:20:17,040 --> 00:20:20,903
which she thought could mean that there was a tumor of some kind in action.

357
00:20:20,903 --> 00:20:25,686
And he had a very large head, which she thought might indicate hydrocephalus.

358
00:20:25,686 --> 00:20:27,316
And as she told me all of these things,

359
00:20:27,316 --> 00:20:31,311
I felt the very center of my being pouring out onto the floor.

360
00:20:31,311 --> 00:20:33,654
And I thought, here I had been working for years

361
00:20:33,654 --> 00:20:36,203
on a book about how much meaning people had found

362
00:20:36,203 --> 00:20:39,736
in the experience of parenting children who are disabled,

363
00:20:39,736 --> 00:20:43,636
and I didn't want to join their number.

364
00:20:43,636 --> 00:20:46,331
Because what I was encountering was an idea of illness.

365
00:20:46,331 --> 00:20:48,581
And like all parents since the dawn of time,

366
00:20:48,581 --> 00:20:51,927
I wanted to protect my child from illness.

367
00:20:51,927 --> 00:20:55,138
And I wanted also to protect myself from illness.

368
00:20:55,138 --> 00:20:57,698
And yet, I knew from the work I had done

369
00:20:57,698 --> 00:21:01,805
that if he had any of the things we were about to start testing for,

370
00:21:01,805 --> 00:21:04,878
that those would ultimately be his identity,

371
00:21:04,878 --> 00:21:09,112
and if they were his identity they would become my identity,

372
00:21:09,112 --> 00:21:13,269
that that illness was going to take a very different shape as it unfolded.

373
00:21:13,269 --> 00:21:16,300
We took him to the MRI machine, we took him to the CAT scanner,

374
00:21:16,300 --> 00:21:20,298
we took this day-old child and gave him over for an arterial blood draw.

375
00:21:20,298 --> 00:21:21,492
We felt helpless.

376
00:21:21,492 --> 00:21:22,970
And at the end of five hours,

377
00:21:22,970 --> 00:21:25,194
they said that his brain was completely clear

378
00:21:25,194 --> 00:21:28,204
and that he was by then extending his legs correctly.

379
00:21:28,204 --> 00:21:31,136
And when I asked the pediatrician what had been going on,

380
00:21:31,136 --> 00:21:35,471
she said she thought in the morning he had probably had a cramp.

381
00:21:35,471 --> 00:21:39,036
(Laughter)

382
00:21:39,036 --> 00:21:46,869
But I thought how my mother was right.

383
00:21:46,869 --> 00:21:50,364
I thought, the love you have for your children

384
00:21:50,364 --> 00:21:53,694
is unlike any other feeling in the world,

385
00:21:53,694 --> 00:21:59,858
and until you have children, you don't know what it feels like.

386
00:21:59,858 --> 00:22:02,179
I think children had ensnared me

387
00:22:02,179 --> 00:22:05,705
the moment I connected fatherhood with loss.

388
00:22:05,705 --> 00:22:07,637
But I'm not sure I would have noticed that

389
00:22:07,637 --> 00:22:13,162
if I hadn't been so in the thick of this research project of mine.

390
00:22:13,162 --> 00:22:16,394
I'd encountered so much strange love,

391
00:22:16,394 --> 00:22:20,179
and I fell very naturally into its bewitching patterns.

392
00:22:20,179 --> 00:22:26,906
And I saw how splendor can illuminate even the most abject vulnerabilities.

393
00:22:26,906 --> 00:22:30,712
During these 10 years, I had witnessed and learned

394
00:22:30,712 --> 00:22:34,204
the terrifying joy of unbearable responsibility,

395
00:22:34,204 --> 00:22:37,736
and I had come to see how it conquers everything else.

396
00:22:37,736 --> 00:22:42,037
And while I had sometimes thought the parents I was interviewing were fools,

397
00:22:42,037 --> 00:22:46,987
enslaving themselves to a lifetime's journey with their thankless children

398
00:22:46,987 --> 00:22:49,936
and trying to breed identity out of misery,

399
00:22:49,936 --> 00:22:54,572
I realized that day that my research had built me a plank

400
00:22:54,572 --> 00:22:57,986
and that I was ready to join them on their ship.

401
00:22:57,986 --> 00:22:59,803
Thank you.

402
00:22:59,803 --> 00:23:05,454
(Applause)