WEBVTT 00:00:00.381 --> 00:00:04.604 "Even in purely non-religious terms, 00:00:04.604 --> 00:00:10.659 homosexuality represents a misuse of the sexual faculty. 00:00:10.659 --> 00:00:15.285 It is a pathetic little second-rate substitute for reality -- 00:00:15.285 --> 00:00:17.685 a pitiable flight from life. 00:00:17.685 --> 00:00:21.508 As such, it deserves no compassion, 00:00:21.508 --> 00:00:24.070 it deserves no treatment 00:00:24.070 --> 00:00:26.837 as minority martyrdom, 00:00:26.837 --> 00:00:33.515 and it deserves not to be deemed anything but a pernicious sickness." NOTE Paragraph 00:00:33.515 --> 00:00:38.737 That's from Time magazine in 1966, when I was three years old. 00:00:38.737 --> 00:00:42.651 And last year, the president of the United States 00:00:42.651 --> 00:00:45.234 came out in favor of gay marriage. NOTE Paragraph 00:00:45.234 --> 00:00:52.683 (Applause) NOTE Paragraph 00:00:52.683 --> 00:00:58.385 And my question is, how did we get from there to here? 00:00:58.385 --> 00:01:03.125 How did an illness become an identity? NOTE Paragraph 00:01:03.125 --> 00:01:06.085 When I was perhaps six years old, 00:01:06.085 --> 00:01:09.018 I went to a shoe store with my mother and my brother. 00:01:09.018 --> 00:01:11.425 And at the end of buying our shoes, 00:01:11.425 --> 00:01:15.217 the salesman said to us that we could each have a balloon to take home. 00:01:15.217 --> 00:01:20.883 My brother wanted a red balloon, and I wanted a pink balloon. 00:01:20.883 --> 00:01:25.798 My mother said that she thought I'd really rather have a blue balloon. 00:01:25.798 --> 00:01:28.934 But I said that I definitely wanted the pink one. 00:01:28.934 --> 00:01:34.353 And she reminded me that my favorite color was blue. 00:01:34.353 --> 00:01:39.143 The fact that my favorite color now is blue, but I'm still gay -- 00:01:39.143 --> 00:01:42.251 (Laughter) -- 00:01:42.251 --> 00:01:46.623 is evidence of both my mother's influence and its limits. NOTE Paragraph 00:01:46.623 --> 00:01:48.690 (Laughter) NOTE Paragraph 00:01:48.690 --> 00:01:55.557 (Applause) NOTE Paragraph 00:01:55.557 --> 00:01:58.098 When I was little, my mother used to say, 00:01:58.114 --> 00:02:02.650 "The love you have for your children is like no other feeling in the world. 00:02:02.650 --> 00:02:05.995 And until you have children, you don't know what it's like." 00:02:05.995 --> 00:02:09.189 And when I was little, I took it as the greatest compliment in the world 00:02:09.189 --> 00:02:12.009 that she would say that about parenting my brother and me. 00:02:12.009 --> 00:02:14.637 And when I was an adolescent, I thought 00:02:14.637 --> 00:02:18.001 that I'm gay, and so I probably can't have a family. 00:02:18.001 --> 00:02:20.378 And when she said it, it made me anxious. 00:02:20.378 --> 00:02:21.904 And after I came out of the closet, 00:02:21.904 --> 00:02:25.104 when she continued to say it, it made me furious. 00:02:25.104 --> 00:02:29.245 I said, "I'm gay. That's not the direction that I'm headed in. 00:02:29.245 --> 00:02:32.290 And I want you to stop saying that." NOTE Paragraph 00:02:35.013 --> 00:02:40.070 About 20 years ago, I was asked by my editors at The New York Times Magazine 00:02:40.070 --> 00:02:42.511 to write a piece about deaf culture. 00:02:42.511 --> 00:02:44.348 And I was rather taken aback. 00:02:44.348 --> 00:02:46.543 I had thought of deafness entirely as an illness. 00:02:46.543 --> 00:02:48.269 Those poor people, they couldn't hear. 00:02:48.269 --> 00:02:51.043 They lacked hearing, and what could we do for them? 00:02:51.043 --> 00:02:53.160 And then I went out into the deaf world. 00:02:53.160 --> 00:02:55.551 I went to deaf clubs. 00:02:55.551 --> 00:02:59.471 I saw performances of deaf theater and of deaf poetry. 00:02:59.471 --> 00:03:05.682 I even went to the Miss Deaf America contest in Nashville, Tennessee 00:03:05.682 --> 00:03:09.526 where people complained about that slurry Southern signing. NOTE Paragraph 00:03:09.526 --> 00:03:13.782 (Laughter) NOTE Paragraph 00:03:13.782 --> 00:03:17.709 And as I plunged deeper and deeper into the deaf world, 00:03:17.709 --> 00:03:20.715 I become convinced that deafness was a culture 00:03:20.715 --> 00:03:23.077 and that the people in the deaf world who said, 00:03:23.077 --> 00:03:26.444 "We don't lack hearing, we have membership in a culture," 00:03:26.444 --> 00:03:29.021 were saying something that was viable. 00:03:29.021 --> 00:03:30.526 It wasn't my culture, 00:03:30.526 --> 00:03:33.244 and I didn't particularly want to rush off and join it, 00:03:33.244 --> 00:03:36.075 but I appreciated that it was a culture 00:03:36.075 --> 00:03:38.210 and that for the people who were members of it, 00:03:38.210 --> 00:03:44.499 it felt as valuable as Latino culture or gay culture or Jewish culture. 00:03:44.499 --> 00:03:49.499 It felt as valid perhaps even as American culture. NOTE Paragraph 00:03:49.499 --> 00:03:52.913 Then a friend of a friend of mine had a daughter who was a dwarf. 00:03:52.913 --> 00:03:54.392 And when her daughter was born, 00:03:54.392 --> 00:03:56.708 she suddenly found herself confronting questions 00:03:56.723 --> 00:03:59.510 that now began to seem quite resonant to me. 00:03:59.510 --> 00:04:03.377 She was facing the question of what to do with this child. 00:04:03.377 --> 00:04:06.837 Should she say, "You're just like everyone else but a little bit shorter?" 00:04:06.837 --> 00:04:10.052 Or should she try to construct some kind of dwarf identity, 00:04:10.052 --> 00:04:12.599 get involved in the Little People of America, 00:04:12.599 --> 00:04:15.392 become aware of what was happening for dwarfs? NOTE Paragraph 00:04:15.392 --> 00:04:16.993 And I suddenly thought, 00:04:16.993 --> 00:04:19.212 most deaf children are born to hearing parents. 00:04:19.212 --> 00:04:22.011 Those hearing parents tend to try to cure them. 00:04:22.011 --> 00:04:26.177 Those deaf people discover community somehow in adolescence. 00:04:26.177 --> 00:04:28.526 Most gay people are born to straight parents. 00:04:28.526 --> 00:04:30.974 Those straight parents often want them to function 00:04:30.974 --> 00:04:33.244 in what they think of as the mainstream world, 00:04:33.244 --> 00:04:36.848 and those gay people have to discover identity later on. 00:04:36.848 --> 00:04:38.464 And here was this friend of mine 00:04:38.464 --> 00:04:41.793 looking at these questions of identity with her dwarf daughter. 00:04:41.793 --> 00:04:43.569 And I thought, there it is again: 00:04:43.569 --> 00:04:46.135 A family that perceives itself to be normal 00:04:46.135 --> 00:04:48.505 with a child who seems to be extraordinary. 00:04:48.505 --> 00:04:53.017 And I hatched the idea that there are really two kinds of identity. NOTE Paragraph 00:04:53.017 --> 00:04:54.941 There are vertical identities, 00:04:54.941 --> 00:04:57.923 which are passed down generationally from parent to child. 00:04:57.923 --> 00:05:03.526 Those are things like ethnicity, frequently nationality, language, often religion. 00:05:03.526 --> 00:05:08.004 Those are things you have in common with your parents and with your children. 00:05:08.004 --> 00:05:10.277 And while some of them can be difficult, 00:05:10.277 --> 00:05:12.471 there's no attempt to cure them. 00:05:12.471 --> 00:05:15.883 You can argue that it's harder in the United States -- 00:05:15.883 --> 00:05:17.857 our current presidency notwithstanding -- 00:05:17.857 --> 00:05:19.690 to be a person of color. 00:05:19.690 --> 00:05:22.389 And yet, we have nobody who is trying to ensure 00:05:22.389 --> 00:05:26.277 that the next generation of children born to African-Americans and Asians 00:05:26.277 --> 00:05:29.666 come out with creamy skin and yellow hair. NOTE Paragraph 00:05:29.666 --> 00:05:33.943 There are these other identities which you have to learn from a peer group. 00:05:33.943 --> 00:05:36.241 And I call them horizontal identities, 00:05:36.241 --> 00:05:39.136 because the peer group is the horizontal experience. 00:05:39.136 --> 00:05:41.704 These are identities that are alien to your parents 00:05:41.704 --> 00:05:45.889 and that you have to discover when you get to see them in peers. 00:05:45.889 --> 00:05:48.974 And those identities, those horizontal identities, 00:05:48.974 --> 00:05:52.690 people have almost always tried to cure. NOTE Paragraph 00:05:52.690 --> 00:05:55.358 And I wanted to look at what the process is 00:05:55.358 --> 00:05:57.575 through which people who have those identities 00:05:57.575 --> 00:06:00.303 come to a good relationship with them. 00:06:00.303 --> 00:06:04.556 And it seemed to me that there were three levels of acceptance 00:06:04.556 --> 00:06:05.995 that needed to take place. 00:06:05.995 --> 00:06:11.544 There's self-acceptance, there's family acceptance, and there's social acceptance. 00:06:11.544 --> 00:06:13.491 And they don't always coincide. NOTE Paragraph 00:06:13.491 --> 00:06:17.627 And a lot of the time, people who have these conditions are very angry 00:06:17.627 --> 00:06:20.691 because they feel as though their parents don't love them, 00:06:20.691 --> 00:06:24.990 when what actually has happened is that their parents don't accept them. 00:06:24.990 --> 00:06:28.156 Love is something that ideally is there unconditionally 00:06:28.156 --> 00:06:31.203 throughout the relationship between a parent and a child. 00:06:31.203 --> 00:06:34.469 But acceptance is something that takes time. 00:06:34.469 --> 00:06:36.704 It always takes time. NOTE Paragraph 00:06:36.704 --> 00:06:41.596 One of the dwarfs I got to know was a guy named Clinton Brown. 00:06:41.596 --> 00:06:44.998 When he was born, he was diagnosed with diastrophic dwarfism, 00:06:44.998 --> 00:06:46.776 a very disabling condition, 00:06:46.776 --> 00:06:50.182 and his parents were told that he would never walk, he would never talk, 00:06:50.182 --> 00:06:52.157 he would have no intellectual capacity, 00:06:52.157 --> 00:06:54.856 and he would probably not even recognize them. 00:06:54.856 --> 00:06:58.277 And it was suggested to them that they leave him at the hospital 00:06:58.277 --> 00:07:00.491 so that he could die there quietly. NOTE Paragraph 00:07:00.491 --> 00:07:02.455 And his mother said she wasn't going to do it. 00:07:02.455 --> 00:07:04.222 And she took her son home. 00:07:04.222 --> 00:07:07.856 And even though she didn't have a lot of educational or financial advantages, 00:07:07.856 --> 00:07:09.804 she found the best doctor in the country 00:07:09.804 --> 00:07:12.003 for dealing with diastrophic dwarfism, 00:07:12.003 --> 00:07:14.169 and she got Clinton enrolled with him. 00:07:14.169 --> 00:07:16.250 And in the course of his childhood, 00:07:16.250 --> 00:07:19.323 he had 30 major surgical procedures. 00:07:19.323 --> 00:07:21.510 And he spent all this time stuck in the hospital 00:07:21.510 --> 00:07:23.203 while he was having those procedures, 00:07:23.203 --> 00:07:25.611 as a result of which he now can walk. NOTE Paragraph 00:07:25.611 --> 00:07:29.961 And while he was there, they sent tutors around to help him with his school work. 00:07:29.961 --> 00:07:32.790 And he worked very hard because there was nothing else to do. 00:07:32.790 --> 00:07:34.537 And he ended up achieving at a level 00:07:34.537 --> 00:07:38.112 that had never before been contemplated by any member of his family. 00:07:38.112 --> 00:07:41.442 He was the first one in his family, in fact, to go to college, 00:07:41.442 --> 00:07:44.824 where he lived on campus and drove a specially-fitted car 00:07:44.824 --> 00:07:47.608 that accommodated his unusual body. NOTE Paragraph 00:07:47.608 --> 00:07:50.571 And his mother told me this story of coming home one day -- 00:07:50.571 --> 00:07:52.336 and he went to college nearby -- 00:07:52.336 --> 00:07:55.423 and she said, "I saw that car, which you can always recognize, 00:07:55.423 --> 00:07:59.846 in the parking lot of a bar," she said. (Laughter) 00:07:59.846 --> 00:08:04.456 "And I thought to myself, they're six feet tall, he's three feet tall. 00:08:04.456 --> 00:08:06.756 Two beers for them is four beers for him." 00:08:06.756 --> 00:08:09.369 She said, "I knew I couldn't go in there and interrupt him, 00:08:09.369 --> 00:08:13.557 but I went home, and I left him eight messages on his cell phone." 00:08:13.557 --> 00:08:15.042 She said, "And then I thought, 00:08:15.042 --> 00:08:17.142 if someone had said to me when he was born 00:08:17.142 --> 00:08:22.755 that my future worry would be that he'd go drinking and driving with his college buddies -- " NOTE Paragraph 00:08:22.755 --> 00:08:31.537 (Applause) NOTE Paragraph 00:08:31.537 --> 00:08:33.576 And I said to her, "What do you think you did 00:08:33.576 --> 00:08:38.036 that helped him to emerge as this charming, accomplished, wonderful person?" 00:08:38.036 --> 00:08:42.723 And she said, "What did I do? I loved him, that's all. 00:08:42.723 --> 00:08:45.859 Clinton just always had that light in him. 00:08:45.859 --> 00:08:52.272 And his father and I were lucky enough to be the first to see it there." NOTE Paragraph 00:08:52.272 --> 00:08:55.310 I'm going to quote from another magazine of the '60s. 00:08:55.310 --> 00:09:01.004 This one is from 1968 -- The Atlantic Monthly, voice of liberal America -- 00:09:01.004 --> 00:09:03.808 written by an important bioethicist. 00:09:03.808 --> 00:09:07.616 He said, "There is no reason to feel guilty 00:09:07.616 --> 00:09:10.921 about putting a Down syndrome child away, 00:09:10.921 --> 00:09:15.980 whether it is put away in the sense of hidden in a sanitarium 00:09:15.980 --> 00:09:19.889 or in a more responsible, lethal sense. 00:09:19.889 --> 00:09:24.837 It is sad, yes -- dreadful. But it carries no guilt. 00:09:24.837 --> 00:09:28.937 True guilt arises only from an offense against a person, 00:09:28.937 --> 00:09:33.538 and a Down's is not a person." NOTE Paragraph 00:09:33.538 --> 00:09:37.479 There's been a lot of ink given to the enormous progress that we've made 00:09:37.479 --> 00:09:39.606 in the treatment of gay people. 00:09:39.606 --> 00:09:43.642 The fact that our attitude has changed is in the headlines every day. 00:09:43.642 --> 00:09:48.338 But we forget how we used to see people who had other differences, 00:09:48.338 --> 00:09:50.476 how we used to see people who were disabled, 00:09:50.476 --> 00:09:53.389 how inhuman we held people to be. 00:09:53.389 --> 00:09:55.267 And the change that's been accomplished there, 00:09:55.267 --> 00:09:57.093 which is almost equally radical, 00:09:57.093 --> 00:09:59.969 is one that we pay not very much attention to. NOTE Paragraph 00:09:59.969 --> 00:10:03.921 One of the families I interviewed, Tom and Karen Robards, 00:10:03.921 --> 00:10:07.649 were taken aback when, as young and successful New Yorkers, 00:10:07.649 --> 00:10:11.104 their first child was diagnosed with Down syndrome. 00:10:11.104 --> 00:10:15.190 They thought the educational opportunities for him were not what they should be, 00:10:15.190 --> 00:10:19.043 and so they decided they would build a little center -- 00:10:19.043 --> 00:10:22.707 two classrooms that they started with a few other parents -- 00:10:22.707 --> 00:10:25.170 to educate kids with D.S. 00:10:25.170 --> 00:10:29.070 And over the years, that center grew into something called the Cooke Center, 00:10:29.070 --> 00:10:31.227 where there are now thousands upon thousands 00:10:31.227 --> 00:10:35.004 of children with intellectual disabilities who are being taught. NOTE Paragraph 00:10:35.004 --> 00:10:38.142 In the time since that Atlantic Monthly story ran, 00:10:38.142 --> 00:10:42.315 the life expectancy for people with Down syndrome has tripled. 00:10:42.315 --> 00:10:47.074 The experience of Down syndrome people includes those who are actors, 00:10:47.074 --> 00:10:53.127 those who are writers, some who are able to live fully independently in adulthood. NOTE Paragraph 00:10:53.127 --> 00:10:55.002 The Robards had a lot to do with that. 00:10:55.002 --> 00:10:56.536 And I said, "Do you regret it? 00:10:56.536 --> 00:10:59.139 Do you wish your child didn't have Down syndrome? 00:10:59.139 --> 00:11:00.988 Do you wish you'd never heard of it?" 00:11:00.988 --> 00:11:03.355 And interestingly his father said, 00:11:03.355 --> 00:11:05.942 "Well, for David, our son, I regret it, 00:11:05.942 --> 00:11:09.322 because for David, it's a difficult way to be in the world, 00:11:09.322 --> 00:11:12.070 and I'd like to give David an easier life. 00:11:12.070 --> 00:11:17.170 But I think if we lost everyone with Down syndrome, it would be a catastrophic loss." NOTE Paragraph 00:11:17.170 --> 00:11:20.601 And Karen Robards said to me, "I'm with Tom. 00:11:20.601 --> 00:11:24.542 For David, I would cure it in an instant to give him an easier life. 00:11:24.542 --> 00:11:29.978 But speaking for myself -- well, I would never have believed 23 years ago when he was born 00:11:29.978 --> 00:11:31.988 that I could come to such a point -- 00:11:31.988 --> 00:11:36.336 speaking for myself, it's made me so much better and so much kinder 00:11:36.336 --> 00:11:39.370 and so much more purposeful in my whole life, 00:11:39.370 --> 00:11:45.779 that speaking for myself, I wouldn't give it up for anything in the world." NOTE Paragraph 00:11:45.779 --> 00:11:50.164 We live at a point when social acceptance for these and many other conditions 00:11:50.164 --> 00:11:51.902 is on the up and up. 00:11:51.902 --> 00:11:53.738 And yet we also live at the moment 00:11:53.738 --> 00:11:56.629 when our ability to eliminate those conditions 00:11:56.629 --> 00:11:59.237 has reached a height we never imagined before. 00:11:59.237 --> 00:12:02.381 Most deaf infants born in the United States now 00:12:02.396 --> 00:12:04.189 will receive Cochlear implants, 00:12:04.189 --> 00:12:09.004 which are put into the brain and connected to a receiver, 00:12:09.004 --> 00:12:14.022 and which allow them to acquire a facsimile of hearing and to use oral speech. 00:12:14.022 --> 00:12:18.321 A compound that has been tested in mice, BMN-111, 00:12:18.321 --> 00:12:23.374 is useful in preventing the action of the achondroplasia gene. 00:12:23.374 --> 00:12:26.119 Achondroplasia is the most common form of dwarfism, 00:12:26.119 --> 00:12:30.086 and mice who have been given that substance and who have the achondroplasia gene, 00:12:30.086 --> 00:12:32.004 grow to full size. 00:12:32.004 --> 00:12:34.555 Testing in humans is around the corner. 00:12:34.555 --> 00:12:36.811 There are blood tests which are making progress 00:12:36.811 --> 00:12:42.306 that would pick up Down syndrome more clearly and earlier in pregnancies than ever before, 00:12:42.306 --> 00:12:47.535 making it easier and easier for people to eliminate those pregnancies, 00:12:47.550 --> 00:12:48.870 or to terminate them. NOTE Paragraph 00:12:48.870 --> 00:12:53.537 And so we have both social progress and medical progress. 00:12:53.537 --> 00:12:55.389 And I believe in both of them. 00:12:55.389 --> 00:12:59.444 I believe the social progress is fantastic and meaningful and wonderful, 00:12:59.444 --> 00:13:02.540 and I think the same thing about the medical progress. 00:13:02.540 --> 00:13:06.903 But I think it's a tragedy when one of them doesn't see the other. 00:13:06.903 --> 00:13:08.974 And when I see the way they're intersecting 00:13:08.974 --> 00:13:11.188 in conditions like the three I've just described, 00:13:11.188 --> 00:13:14.838 I sometimes think it's like those moments in grand opera 00:13:14.838 --> 00:13:17.442 when the hero realizes he loves the heroine 00:13:17.442 --> 00:13:21.889 at the exact moment that she lies expiring on a divan. NOTE Paragraph 00:13:21.889 --> 00:13:24.688 (Laughter) NOTE Paragraph 00:13:24.688 --> 00:13:28.570 We have to think about how we feel about cures altogether. 00:13:28.570 --> 00:13:31.436 And a lot of the time the question of parenthood is, 00:13:31.436 --> 00:13:33.288 what do we validate in our children, 00:13:33.288 --> 00:13:35.040 and what do we cure in them? NOTE Paragraph 00:13:35.040 --> 00:13:39.211 Jim Sinclair, a prominent autism activist, said, 00:13:39.211 --> 00:13:43.865 "When parents say 'I wish my child did not have autism,' 00:13:43.865 --> 00:13:48.724 what they're really saying is 'I wish the child I have did not exist 00:13:48.724 --> 00:13:52.743 and I had a different, non-autistic child instead.' 00:13:52.743 --> 00:13:57.535 Read that again. This is what we hear when you mourn over our existence. 00:13:57.535 --> 00:14:00.737 This is what we hear when you pray for a cure -- 00:14:00.737 --> 00:14:02.642 that your fondest wish for us 00:14:02.642 --> 00:14:05.021 is that someday we will cease to be 00:14:05.021 --> 00:14:10.576 and strangers you can love will move in behind our faces." 00:14:10.576 --> 00:14:13.642 It's a very extreme point of view, 00:14:13.642 --> 00:14:17.771 but it points to the reality that people engage with the life they have 00:14:17.771 --> 00:14:22.336 and they don't want to be cured or changed or eliminated. 00:14:22.336 --> 00:14:25.556 They want to be whoever it is that they've come to be. NOTE Paragraph 00:14:25.556 --> 00:14:29.356 One of the families I interviewed for this project 00:14:29.356 --> 00:14:34.610 was the family of Dylan Klebold who was one of the perpetrators of the Columbine massacre. 00:14:34.610 --> 00:14:37.405 It took a long time to persuade them to talk to me, 00:14:37.405 --> 00:14:40.169 and once they agreed, they were so full of their story 00:14:40.169 --> 00:14:41.868 that they couldn't stop telling it. 00:14:41.868 --> 00:14:44.485 And the first weekend I spent with them -- the first of many -- 00:14:44.485 --> 00:14:47.606 I recorded more than 20 hours of conversation. NOTE Paragraph 00:14:47.606 --> 00:14:49.869 And on Sunday night, we were all exhausted. 00:14:49.869 --> 00:14:52.755 We were sitting in the kitchen. Sue Klebold was fixing dinner. 00:14:52.755 --> 00:14:55.276 And I said, "If Dylan were here now, 00:14:55.276 --> 00:14:58.121 do you have a sense of what you'd want to ask him?" 00:14:58.121 --> 00:15:00.489 And his father said, "I sure do. 00:15:00.489 --> 00:15:04.038 I'd want to ask him what the hell he thought he was doing." 00:15:04.038 --> 00:15:07.676 And Sue looked at the floor, and she thought for a minute. 00:15:07.676 --> 00:15:09.855 And then she looked back up and said, 00:15:09.855 --> 00:15:13.918 "I would ask him to forgive me for being his mother 00:15:13.918 --> 00:15:18.342 and never knowing what was going on inside his head." NOTE Paragraph 00:15:18.342 --> 00:15:21.310 When I had dinner with her a couple of years later -- 00:15:21.310 --> 00:15:23.237 one of many dinners that we had together -- 00:15:23.237 --> 00:15:26.647 she said, "You know, when it first happened, 00:15:26.647 --> 00:15:30.455 I used to wish that I had never married, that I had never had children. 00:15:30.455 --> 00:15:33.947 If I hadn't gone to Ohio State and crossed paths with Tom, 00:15:33.947 --> 00:15:37.589 this child wouldn't have existed and this terrible thing wouldn't have happened. 00:15:37.589 --> 00:15:42.104 But I've come to feel that I love the children I had so much 00:15:42.104 --> 00:15:45.407 that I don't want to imagine a life without them. 00:15:45.407 --> 00:15:50.336 I recognize the pain they caused to others, for which there can be no forgiveness, 00:15:50.336 --> 00:15:53.800 but the pain they caused to me, there is," she said. 00:15:53.800 --> 00:15:57.592 "So while I recognize that it would have been better for the world 00:15:57.592 --> 00:16:00.102 if Dylan had never been born, 00:16:00.102 --> 00:16:05.584 I've decided that it would not have been better for me." NOTE Paragraph 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, 00:16:12.068 --> 00:16:15.101 problems that they mostly would have done anything to avoid, 00:16:15.101 --> 00:16:18.920 and that they had all found so much meaning in that experience of parenting. 00:16:18.920 --> 00:16:22.121 And then I thought, all of us who have children 00:16:22.121 --> 00:16:24.813 love the children we have, with their flaws. 00:16:24.813 --> 00:16:29.069 If some glorious angel suddenly descended through my living room ceiling 00:16:29.069 --> 00:16:31.279 and offered to take away the children I have 00:16:31.279 --> 00:16:37.873 and give me other, better children -- more polite, funnier, nicer, smarter -- 00:16:37.873 --> 00:16:42.978 I would cling to the children I have and pray away that atrocious spectacle. 00:16:42.978 --> 00:16:44.970 And ultimately I feel 00:16:44.970 --> 00:16:48.548 that in the same way that we test flame-retardant pajamas in an inferno 00:16:48.548 --> 00:16:53.020 to ensure they won't catch fire when our child reaches across the stove, 00:16:53.020 --> 00:16:57.088 so these stories of families negotiating these extreme differences 00:16:57.088 --> 00:16:59.769 reflect on the universal experience of parenting, 00:16:59.769 --> 00:17:03.903 which is always that sometimes you look at your child and you think, 00:17:03.903 --> 00:17:06.092 where did you come from? NOTE Paragraph 00:17:06.092 --> 00:17:08.546 (Laughter) NOTE Paragraph 00:17:08.546 --> 00:17:13.521 It turns out that while each of these individual differences is siloed -- 00:17:13.521 --> 00:17:16.066 there are only so many families dealing with schizophrenia, 00:17:16.066 --> 00:17:18.703 there are only so many families of children who are transgender, 00:17:18.703 --> 00:17:20.897 there are only so many families of prodigies -- 00:17:20.897 --> 00:17:23.181 who also face similar challenges in many ways -- 00:17:23.181 --> 00:17:25.871 there are only so many families in each of those categories -- 00:17:25.871 --> 00:17:27.303 but if you start to think 00:17:27.303 --> 00:17:30.869 that the experience of negotiating difference within your family 00:17:30.869 --> 00:17:32.899 is what people are addressing, 00:17:32.899 --> 00:17:36.636 then you discover that it's a nearly universal phenomenon. 00:17:36.636 --> 00:17:41.271 Ironically, it turns out, that it's our differences, and our negotiation of difference, 00:17:41.271 --> 00:17:43.699 that unite us. NOTE Paragraph 00:17:43.699 --> 00:17:49.013 I decided to have children while I was working on this project. 00:17:49.013 --> 00:17:52.129 And many people were astonished and said, 00:17:52.129 --> 00:17:53.977 "But how can you decide to have children 00:17:53.977 --> 00:17:58.083 in the midst of studying everything that can go wrong?" 00:17:58.083 --> 00:18:01.313 And I said, "I'm not studying everything that can go wrong. 00:18:01.313 --> 00:18:04.404 What I'm studying is how much love there can be, 00:18:04.404 --> 00:18:09.129 even when everything appears to be going wrong." NOTE Paragraph 00:18:09.129 --> 00:18:14.764 I thought a lot about the mother of one disabled child I had seen, 00:18:14.764 --> 00:18:18.536 a severely disabled child who died through caregiver neglect. 00:18:18.536 --> 00:18:21.346 And when his ashes were interred, his mother said, 00:18:21.346 --> 00:18:29.380 "I pray here for forgiveness for having been twice robbed, 00:18:29.380 --> 00:18:35.436 once of the child I wanted and once of the son I loved." 00:18:35.436 --> 00:18:40.072 And I figured it was possible then for anyone to love any child 00:18:40.072 --> 00:18:42.604 if they had the effective will to do so. NOTE Paragraph 00:18:42.604 --> 00:18:47.629 So my husband is the biological father of two children 00:18:47.629 --> 00:18:50.390 with some lesbian friends in Minneapolis. 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. 00:18:56.214 --> 00:18:58.112 And so she and I have a daughter, 00:18:58.112 --> 00:19:00.323 and mother and daughter live in Texas. 00:19:00.323 --> 00:19:03.562 And my husband and I have a son who lives with us all the time 00:19:03.562 --> 00:19:05.946 of whom I am the biological father, 00:19:05.946 --> 00:19:09.866 and our surrogate for the pregnancy was Laura, 00:19:09.881 --> 00:19:12.929 the lesbian mother of Oliver and Lucy in Minneapolis. NOTE Paragraph 00:19:12.929 --> 00:19:21.584 (Applause) NOTE Paragraph 00:19:21.584 --> 00:19:27.048 So the shorthand is five parents of four children in three states. NOTE Paragraph 00:19:27.048 --> 00:19:30.404 And there are people who think that the existence of my family 00:19:30.404 --> 00:19:35.069 somehow undermines or weakens or damages their family. 00:19:35.069 --> 00:19:38.697 And there are people who think that families like mine 00:19:38.697 --> 00:19:40.381 shouldn't be allowed to exist. 00:19:40.381 --> 00:19:46.036 And I don't accept subtractive models of love, only additive ones. 00:19:46.036 --> 00:19:49.562 And I believe that in the same way that we need species diversity 00:19:49.562 --> 00:19:51.813 to ensure that the planet can go on, 00:19:51.813 --> 00:19:56.014 so we need this diversity of affection and diversity of family 00:19:56.014 --> 00:20:00.695 in order to strengthen the ecosphere of kindness. NOTE Paragraph 00:20:00.695 --> 00:20:03.065 The day after our son was born, 00:20:03.065 --> 00:20:07.637 the pediatrician came into the hospital room and said she was concerned. 00:20:07.637 --> 00:20:10.770 He wasn't extending his legs appropriately. 00:20:10.770 --> 00:20:13.679 She said that might mean that he had brain damage. 00:20:13.679 --> 00:20:17.040 In so far as he was extending them, he was doing so asymmetrically, 00:20:17.040 --> 00:20:20.903 which she thought could mean that there was a tumor of some kind in action. 00:20:20.903 --> 00:20:25.686 And he had a very large head, which she thought might indicate hydrocephalus. NOTE Paragraph 00:20:25.686 --> 00:20:27.316 And as she told me all of these things, 00:20:27.316 --> 00:20:31.311 I felt the very center of my being pouring out onto the floor. 00:20:31.311 --> 00:20:33.654 And I thought, here I had been working for years 00:20:33.654 --> 00:20:36.203 on a book about how much meaning people had found 00:20:36.203 --> 00:20:39.736 in the experience of parenting children who are disabled, 00:20:39.736 --> 00:20:43.636 and I didn't want to join their number. 00:20:43.636 --> 00:20:46.331 Because what I was encountering was an idea of illness. 00:20:46.331 --> 00:20:48.581 And like all parents since the dawn of time, 00:20:48.581 --> 00:20:51.927 I wanted to protect my child from illness. 00:20:51.927 --> 00:20:55.138 And I wanted also to protect myself from illness. 00:20:55.138 --> 00:20:57.698 And yet, I knew from the work I had done 00:20:57.698 --> 00:21:01.805 that if he had any of the things we were about to start testing for, 00:21:01.805 --> 00:21:04.878 that those would ultimately be his identity, 00:21:04.878 --> 00:21:09.112 and if they were his identity they would become my identity, 00:21:09.112 --> 00:21:13.269 that that illness was going to take a very different shape as it unfolded. NOTE Paragraph 00:21:13.269 --> 00:21:16.300 We took him to the MRI machine, we took him to the CAT scanner, 00:21:16.300 --> 00:21:20.298 we took this day-old child and gave him over for an arterial blood draw. 00:21:20.298 --> 00:21:21.492 We felt helpless. 00:21:21.492 --> 00:21:22.970 And at the end of five hours, 00:21:22.970 --> 00:21:25.194 they said that his brain was completely clear 00:21:25.194 --> 00:21:28.204 and that he was by then extending his legs correctly. 00:21:28.204 --> 00:21:31.136 And when I asked the pediatrician what had been going on, 00:21:31.136 --> 00:21:35.471 she said she thought in the morning he had probably had a cramp. NOTE Paragraph 00:21:35.471 --> 00:21:39.036 (Laughter) NOTE Paragraph 00:21:39.036 --> 00:21:46.869 But I thought how my mother was right. 00:21:46.869 --> 00:21:50.364 I thought, the love you have for your children 00:21:50.364 --> 00:21:53.694 is unlike any other feeling in the world, 00:21:53.694 --> 00:21:59.858 and until you have children, you don't know what it feels like. NOTE Paragraph 00:21:59.858 --> 00:22:02.179 I think children had ensnared me 00:22:02.179 --> 00:22:05.705 the moment I connected fatherhood with loss. 00:22:05.705 --> 00:22:07.637 But I'm not sure I would have noticed that 00:22:07.637 --> 00:22:13.162 if I hadn't been so in the thick of this research project of mine. 00:22:13.162 --> 00:22:16.394 I'd encountered so much strange love, 00:22:16.394 --> 00:22:20.179 and I fell very naturally into its bewitching patterns. 00:22:20.179 --> 00:22:26.906 And I saw how splendor can illuminate even the most abject vulnerabilities. NOTE Paragraph 00:22:26.906 --> 00:22:30.712 During these 10 years, I had witnessed and learned 00:22:30.712 --> 00:22:34.204 the terrifying joy of unbearable responsibility, 00:22:34.204 --> 00:22:37.736 and I had come to see how it conquers everything else. 00:22:37.736 --> 00:22:42.037 And while I had sometimes thought the parents I was interviewing were fools, 00:22:42.037 --> 00:22:46.987 enslaving themselves to a lifetime's journey with their thankless children 00:22:46.987 --> 00:22:49.936 and trying to breed identity out of misery, 00:22:49.936 --> 00:22:54.572 I realized that day that my research had built me a plank 00:22:54.572 --> 00:22:57.986 and that I was ready to join them on their ship. NOTE Paragraph 00:22:57.986 --> 00:22:59.803 Thank you. NOTE Paragraph 00:22:59.803 --> 00:23:05.454 (Applause)