WEBVTT 00:00:00.976 --> 00:00:05.206 "Even in purely nonreligious terms, 00:00:05.230 --> 00:00:10.446 homosexuality represents a misuse of the sexual faculty. 00:00:10.970 --> 00:00:15.691 It is a pathetic little second-rate substitute for reality -- 00:00:15.715 --> 00:00:17.661 a pitiable flight from life. 00:00:18.167 --> 00:00:21.913 As such, it deserves no compassion, 00:00:21.937 --> 00:00:27.119 it deserves no treatment as minority martyrdom, 00:00:27.143 --> 00:00:33.083 and it deserves not to be deemed anything but a pernicious sickness." NOTE Paragraph 00:00:33.687 --> 00:00:38.713 That's from "Time" magazine in 1966, when I was three years old. 00:00:39.215 --> 00:00:42.719 And last year, the president of the United States 00:00:42.743 --> 00:00:45.406 came out in favor of gay marriage. NOTE Paragraph 00:00:45.992 --> 00:00:52.956 (Applause) NOTE Paragraph 00:00:53.488 --> 00:00:55.045 And my question is: 00:00:55.069 --> 00:00:58.625 How did we get from there to here? 00:00:58.649 --> 00:01:02.711 How did an illness become an identity? NOTE Paragraph 00:01:03.497 --> 00:01:06.564 When I was perhaps six years old, 00:01:06.588 --> 00:01:09.128 I went to a shoe store with my mother and my brother. 00:01:09.152 --> 00:01:11.723 And at the end of buying our shoes, 00:01:11.747 --> 00:01:15.193 the salesman said to us that we could each have a balloon to take home. 00:01:15.611 --> 00:01:17.727 My brother wanted a red balloon, 00:01:17.751 --> 00:01:20.291 and I wanted a pink balloon. 00:01:21.092 --> 00:01:25.694 My mother said that she thought I'd really rather have a blue balloon. NOTE Paragraph 00:01:25.718 --> 00:01:26.749 (Laughter) NOTE Paragraph 00:01:26.773 --> 00:01:29.111 But I said that I definitely wanted the pink one. 00:01:29.135 --> 00:01:34.239 And she reminded me that my favorite color was blue. 00:01:34.752 --> 00:01:39.119 The fact that my favorite color now is blue, but I'm still gay -- NOTE Paragraph 00:01:39.143 --> 00:01:42.372 (Laughter) NOTE Paragraph 00:01:42.396 --> 00:01:45.247 is evidence of both my mother's influence 00:01:45.271 --> 00:01:46.425 and its limits. NOTE Paragraph 00:01:46.449 --> 00:01:48.666 (Laughter) NOTE Paragraph 00:01:48.690 --> 00:01:55.109 (Applause) NOTE Paragraph 00:01:55.704 --> 00:01:58.374 When I was little, my mother used to say, 00:01:58.398 --> 00:02:02.985 "The love you have for your children is like no other feeling in the world. 00:02:03.009 --> 00:02:06.185 And until you have children, you don't know what it's like." 00:02:06.209 --> 00:02:09.659 And when I was little, I took it as the greatest compliment in the world 00:02:09.683 --> 00:02:12.445 that she would say that about parenting my brother and me. 00:02:12.469 --> 00:02:15.787 And when I was an adolescent, I thought, "But I'm gay, 00:02:15.811 --> 00:02:18.143 and so I probably can't have a family." 00:02:18.167 --> 00:02:20.532 And when she said it, it made me anxious. 00:02:20.556 --> 00:02:22.253 And after I came out of the closet, 00:02:22.277 --> 00:02:25.180 when she continued to say it, it made me furious. 00:02:25.204 --> 00:02:29.498 I said, "I'm gay. That's not the direction that I'm headed in. 00:02:29.522 --> 00:02:31.558 And I want you to stop saying that." NOTE Paragraph 00:02:35.400 --> 00:02:37.099 About 20 years ago, 00:02:37.123 --> 00:02:40.174 I was asked by my editors at the "New York Times Magazine" 00:02:40.198 --> 00:02:42.894 to write a piece about Deaf culture. 00:02:42.918 --> 00:02:44.324 And I was rather taken aback. 00:02:44.348 --> 00:02:46.652 I had thought of deafness entirely as an illness: 00:02:46.676 --> 00:02:48.636 those poor people, they couldn't hear, 00:02:48.660 --> 00:02:51.280 they lacked hearing, and what could we do for them? 00:02:51.304 --> 00:02:53.798 And then I went out into the Deaf world. 00:02:53.822 --> 00:02:55.703 I went to Deaf clubs. 00:02:55.727 --> 00:03:00.105 I saw performances of Deaf theater and of Deaf poetry. 00:03:00.129 --> 00:03:05.835 I even went to the Miss Deaf America contest in Nashville, Tennessee, 00:03:05.859 --> 00:03:09.502 where people complained about that slurry Southern signing. NOTE Paragraph 00:03:10.031 --> 00:03:13.575 (Laughter) NOTE Paragraph 00:03:14.035 --> 00:03:18.148 And as I plunged deeper and deeper into the Deaf world, 00:03:18.172 --> 00:03:21.146 I became convinced that Deafness was a culture 00:03:21.170 --> 00:03:23.392 and that the people in the Deaf world who said, 00:03:23.416 --> 00:03:26.887 "We don't lack hearing; we have membership in a culture," 00:03:26.911 --> 00:03:29.173 were saying something that was viable. 00:03:29.197 --> 00:03:30.625 It wasn't my culture, 00:03:30.649 --> 00:03:33.578 and I didn't particularly want to rush off and join it, 00:03:33.602 --> 00:03:36.112 but I appreciated that it was a culture 00:03:36.136 --> 00:03:38.503 and that for the people who were members of it, 00:03:38.527 --> 00:03:44.857 it felt as valuable as Latino culture or gay culture or Jewish culture. 00:03:44.881 --> 00:03:48.913 It felt as valid, perhaps, even as American culture. NOTE Paragraph 00:03:49.898 --> 00:03:53.190 Then a friend of a friend of mine had a daughter who was a dwarf. 00:03:53.214 --> 00:03:54.713 And when her daughter was born, 00:03:54.737 --> 00:03:57.086 she suddenly found herself confronting questions 00:03:57.110 --> 00:03:59.743 that now began to seem quite resonant to me. 00:03:59.767 --> 00:04:03.353 She was facing the question of what to do with this child. 00:04:03.377 --> 00:04:07.131 Should she say, "You're just like everyone else but a little bit shorter?" 00:04:07.155 --> 00:04:10.372 Or should she try to construct some kind of dwarf identity, 00:04:10.396 --> 00:04:12.767 get involved in the Little People of America, 00:04:12.791 --> 00:04:15.368 become aware of what was happening for dwarfs? NOTE Paragraph 00:04:15.704 --> 00:04:17.187 And I suddenly thought, 00:04:17.211 --> 00:04:19.716 "Most deaf children are born to hearing parents. 00:04:19.740 --> 00:04:22.189 Those hearing parents tend to try to cure them. 00:04:22.213 --> 00:04:26.342 Those deaf people discover community somehow in adolescence. 00:04:26.366 --> 00:04:28.502 Most gay people are born to straight parents. 00:04:28.526 --> 00:04:31.097 Those straight parents often want them to function 00:04:31.121 --> 00:04:33.349 in what they think of as the mainstream world, 00:04:33.373 --> 00:04:36.824 and those gay people have to discover identity later on. 00:04:36.848 --> 00:04:38.486 And here was this friend of mine, 00:04:38.510 --> 00:04:42.030 looking at these questions of identity with her dwarf daughter. 00:04:42.054 --> 00:04:43.768 And I thought, "There it is again: 00:04:43.792 --> 00:04:46.287 a family that perceives itself to be normal 00:04:46.311 --> 00:04:48.932 with a child who seems to be extraordinary." 00:04:48.956 --> 00:04:52.993 And I hatched the idea that there are really two kinds of identity. NOTE Paragraph 00:04:53.518 --> 00:04:54.987 There are vertical identities, 00:04:55.011 --> 00:04:58.182 which are passed down generationally from parent to child. 00:04:58.206 --> 00:05:00.330 Those are things like ethnicity, 00:05:00.354 --> 00:05:03.679 frequently nationality, language, often religion. 00:05:03.703 --> 00:05:08.183 Those are things you have in common with your parents and with your children. 00:05:08.207 --> 00:05:10.635 And while some of them can be difficult, 00:05:10.659 --> 00:05:12.603 there's no attempt to cure them. 00:05:12.627 --> 00:05:15.859 You can argue that it's harder in the United States -- 00:05:15.883 --> 00:05:18.002 our current presidency notwithstanding -- 00:05:18.026 --> 00:05:19.666 to be a person of color. 00:05:19.690 --> 00:05:22.406 And yet, we have nobody who is trying to ensure 00:05:22.430 --> 00:05:26.476 that the next generation of children born to African-Americans and Asians 00:05:26.500 --> 00:05:29.352 come out with creamy skin and yellow hair. NOTE Paragraph 00:05:30.027 --> 00:05:34.117 There are these other identities which you have to learn from a peer group, 00:05:34.141 --> 00:05:36.217 and I call them "horizontal identities," 00:05:36.241 --> 00:05:39.346 because the peer group is the horizontal experience. 00:05:39.370 --> 00:05:41.947 These are identities that are alien to your parents 00:05:41.971 --> 00:05:46.165 and that you have to discover when you get to see them in peers. 00:05:46.189 --> 00:05:49.250 And those identities, those horizontal identities, 00:05:49.274 --> 00:05:53.007 people have almost always tried to cure. NOTE Paragraph 00:05:53.031 --> 00:05:55.366 And I wanted to look at what the process is 00:05:55.390 --> 00:05:57.945 through which people who have those identities 00:05:57.969 --> 00:06:00.438 come to a good relationship with them. 00:06:00.462 --> 00:06:04.609 And it seemed to me that there were three levels of acceptance 00:06:04.633 --> 00:06:06.271 that needed to take place. 00:06:06.295 --> 00:06:11.646 There's self-acceptance, there's family acceptance, and there's social acceptance. 00:06:11.670 --> 00:06:13.892 And they don't always coincide. NOTE Paragraph 00:06:13.916 --> 00:06:17.730 And a lot of the time, people who have these conditions are very angry, 00:06:17.754 --> 00:06:21.236 because they feel as though their parents don't love them, 00:06:21.260 --> 00:06:24.988 when what actually has happened is that their parents don't accept them. 00:06:25.012 --> 00:06:28.186 Love is something that, ideally, is there unconditionally 00:06:28.210 --> 00:06:31.479 throughout the relationship between a parent and a child. 00:06:31.503 --> 00:06:34.637 But acceptance is something that takes time. 00:06:34.661 --> 00:06:36.405 It always takes time. NOTE Paragraph 00:06:37.199 --> 00:06:41.287 One of the dwarfs I got to know was a guy named Clinton Brown. 00:06:41.859 --> 00:06:45.093 When he was born, he was diagnosed with diastrophic dwarfism, 00:06:45.117 --> 00:06:46.767 a very disabling condition, 00:06:46.791 --> 00:06:49.188 and his parents were told that he would never walk, 00:06:49.212 --> 00:06:50.386 he would never talk, 00:06:50.410 --> 00:06:52.433 he would have no intellectual capacity, 00:06:52.457 --> 00:06:54.897 and he would probably not even recognize them. 00:06:54.921 --> 00:06:58.451 And it was suggested to them that they leave him at the hospital 00:06:58.475 --> 00:07:00.515 so that he could die there quietly. NOTE Paragraph 00:07:00.539 --> 00:07:02.699 His mother said she wasn't going to do it, 00:07:02.723 --> 00:07:04.430 and she took her son home. 00:07:04.454 --> 00:07:08.231 And even though she didn't have a lot of educational or financial advantages, 00:07:08.255 --> 00:07:12.279 she found the best doctor in the country for dealing with diastrophic dwarfism, 00:07:12.303 --> 00:07:14.445 and she got Clinton enrolled with him. 00:07:14.469 --> 00:07:16.639 And in the course of his childhood, 00:07:16.663 --> 00:07:19.471 he had 30 major surgical procedures. 00:07:19.495 --> 00:07:21.761 And he spent all this time stuck in the hospital 00:07:21.785 --> 00:07:23.578 while he was having those procedures, 00:07:23.602 --> 00:07:25.681 as a result of which, he now can walk. NOTE Paragraph 00:07:25.705 --> 00:07:30.165 While he was there, they sent tutors around to help him with his schoolwork, 00:07:30.189 --> 00:07:33.166 and he worked very hard, because there was nothing else to do. 00:07:33.190 --> 00:07:34.741 He ended up achieving at a level 00:07:34.765 --> 00:07:38.152 that had never before been contemplated by any member of his family. 00:07:38.557 --> 00:07:41.653 He was the first one in his family, in fact, to go to college, 00:07:41.677 --> 00:07:44.817 where he lived on campus and drove a specially fitted car 00:07:44.841 --> 00:07:47.788 that accommodated his unusual body. NOTE Paragraph 00:07:47.812 --> 00:07:50.917 And his mother told me the story of coming home one day -- 00:07:50.941 --> 00:07:52.612 and he went to college nearby -- 00:07:52.636 --> 00:07:55.628 and she said, "I saw that car, which you can always recognize, 00:07:55.652 --> 00:07:58.779 in the parking lot of a bar," she said. NOTE Paragraph 00:07:58.803 --> 00:08:00.176 (Laughter) NOTE Paragraph 00:08:00.200 --> 00:08:01.938 "And I thought to myself, 00:08:01.962 --> 00:08:04.599 'They're six feet tall, he's three feet tall. 00:08:04.623 --> 00:08:07.032 Two beers for them is four beers for him.'" 00:08:07.056 --> 00:08:09.866 She said, "I knew I couldn't go in there and interrupt him, 00:08:09.890 --> 00:08:13.268 but I went home, and I left him eight messages on his cell phone." 00:08:13.933 --> 00:08:15.388 She said, "And then I thought, 00:08:15.412 --> 00:08:17.510 if someone had said to me, when he was born, 00:08:17.534 --> 00:08:21.240 that my future worry would be that he'd go drinking and driving 00:08:21.264 --> 00:08:22.757 with his college buddies ..." NOTE Paragraph 00:08:22.781 --> 00:08:24.352 (Laughter) NOTE Paragraph 00:08:24.376 --> 00:08:31.353 (Applause) NOTE Paragraph 00:08:31.861 --> 00:08:33.026 And I said to her, 00:08:33.050 --> 00:08:35.522 "What do you think you did that helped him to emerge 00:08:35.546 --> 00:08:38.395 as this charming, accomplished, wonderful person?" 00:08:38.419 --> 00:08:41.064 And she said, "What did I do? 00:08:41.088 --> 00:08:43.146 I loved him, that's all. 00:08:43.170 --> 00:08:46.564 Clinton just always had that light in him. 00:08:46.588 --> 00:08:51.554 And his father and I were lucky enough to be the first to see it there." NOTE Paragraph 00:08:52.887 --> 00:08:55.410 I'm going to quote from another magazine of the '60s. 00:08:55.434 --> 00:08:58.070 This one is from 1968 -- 00:08:58.094 --> 00:09:01.501 "The Atlantic Monthly," voice of liberal America -- 00:09:01.525 --> 00:09:03.915 written by an important bioethicist. 00:09:03.939 --> 00:09:07.836 He said, "There is no reason to feel guilty 00:09:07.860 --> 00:09:11.415 about putting a Down's syndrome child away, 00:09:11.439 --> 00:09:16.404 whether it is 'put away' in the sense of hidden in a sanitarium 00:09:16.428 --> 00:09:19.406 or in a more responsible, lethal sense. 00:09:20.189 --> 00:09:23.169 It is sad, yes. Dreadful. 00:09:23.193 --> 00:09:25.058 But it carries no guilt. 00:09:25.082 --> 00:09:29.213 True guilt arises only from an offense against a person, 00:09:29.237 --> 00:09:32.598 and a Down's is not a person." NOTE Paragraph 00:09:33.838 --> 00:09:37.617 There's been a lot of ink given to the enormous progress that we've made 00:09:37.641 --> 00:09:39.665 in the treatment of gay people. 00:09:39.689 --> 00:09:43.918 The fact that our attitude has changed is in the headlines every day. 00:09:43.942 --> 00:09:48.318 But we forget how we used to see people who had other differences, 00:09:48.342 --> 00:09:50.641 how we used to see people who were disabled, 00:09:50.665 --> 00:09:53.522 how inhuman we held people to be. 00:09:53.546 --> 00:09:55.753 And the change that's been accomplished there, 00:09:55.777 --> 00:09:57.337 which is almost equally radical, 00:09:57.361 --> 00:10:00.382 is one that we pay not very much attention to. NOTE Paragraph 00:10:00.406 --> 00:10:04.104 One of the families I interviewed, Tom and Karen Robards, 00:10:04.128 --> 00:10:07.660 were taken aback when, as young and successful New Yorkers, 00:10:07.684 --> 00:10:10.635 their first child was diagnosed with Down syndrome. 00:10:11.316 --> 00:10:15.466 They thought the educational opportunities for him were not what they should be, 00:10:15.490 --> 00:10:19.319 and so they decided they would build a little center -- 00:10:19.343 --> 00:10:22.920 two classrooms that they started with a few other parents -- 00:10:22.944 --> 00:10:25.262 to educate kids with DS. 00:10:25.286 --> 00:10:29.346 And over the years, that center grew into something called the Cooke Center, 00:10:29.370 --> 00:10:32.068 where there are now thousands upon thousands of children 00:10:32.092 --> 00:10:33.741 with intellectual disabilities 00:10:33.765 --> 00:10:35.280 who are being taught. NOTE Paragraph 00:10:35.304 --> 00:10:38.548 In the time since that "Atlantic Monthly" story ran, 00:10:38.572 --> 00:10:43.095 the life expectancy for people with Down syndrome has tripled. 00:10:43.119 --> 00:10:47.664 The experience of Down syndrome people includes those who are actors, 00:10:47.688 --> 00:10:52.690 those who are writers, some who are able to live fully independently in adulthood. NOTE Paragraph 00:10:53.579 --> 00:10:55.419 The Robards had a lot to do with that. 00:10:55.443 --> 00:10:56.896 And I said, "Do you regret it? 00:10:56.920 --> 00:10:59.415 Do you wish your child didn't have Down syndrome? 00:10:59.439 --> 00:11:01.264 Do you wish you'd never heard of it?" 00:11:01.288 --> 00:11:03.942 And interestingly, his father said, 00:11:03.966 --> 00:11:06.106 "Well, for David, our son, I regret it, 00:11:06.130 --> 00:11:09.598 because for David, it's a difficult way to be in the world, 00:11:09.622 --> 00:11:12.427 and I'd like to give David an easier life. 00:11:12.451 --> 00:11:15.258 But I think if we lost everyone with Down syndrome, 00:11:15.282 --> 00:11:17.643 it would be a catastrophic loss." NOTE Paragraph 00:11:17.667 --> 00:11:20.932 And Karen Robards said to me, "I'm with Tom. 00:11:20.956 --> 00:11:24.818 For David, I would cure it in an instant, to give him an easier life. 00:11:24.842 --> 00:11:26.753 But speaking for myself -- 00:11:26.777 --> 00:11:30.254 well, I would never have believed 23 years ago when he was born 00:11:30.278 --> 00:11:32.356 that I could come to such a point. 00:11:32.380 --> 00:11:36.691 Speaking for myself, it's made me so much better and so much kinder 00:11:36.715 --> 00:11:41.621 and so much more purposeful in my whole life that, speaking for myself, 00:11:41.645 --> 00:11:45.121 I wouldn't give it up for anything in the world." NOTE Paragraph 00:11:46.422 --> 00:11:50.440 We live at a point when social acceptance for these and many other conditions 00:11:50.464 --> 00:11:52.087 is on the up and up. 00:11:52.111 --> 00:11:54.172 And yet we also live at the moment 00:11:54.196 --> 00:11:56.827 when our ability to eliminate those conditions 00:11:56.851 --> 00:11:59.676 has reached a height we never imagined before. 00:11:59.700 --> 00:12:02.548 Most deaf infants born in the United States now 00:12:02.572 --> 00:12:04.548 will receive cochlear implants, 00:12:04.572 --> 00:12:09.280 which are put into the brain and connected to a receiver, 00:12:09.304 --> 00:12:12.288 and which allow them to acquire a facsimile of hearing 00:12:12.312 --> 00:12:14.435 and to use oral speech. 00:12:14.459 --> 00:12:18.700 A compound that has been tested in mice, BMN-111, 00:12:18.724 --> 00:12:23.297 is useful in preventing the action of the achondroplasia gene. 00:12:23.321 --> 00:12:26.276 Achondroplasia is the most common form of dwarfism, 00:12:26.300 --> 00:12:28.388 and mice who have been given that substance 00:12:28.412 --> 00:12:30.256 and who have the achondroplasia gene 00:12:30.280 --> 00:12:31.993 grow to full size. 00:12:32.017 --> 00:12:34.937 Testing in humans is around the corner. 00:12:34.961 --> 00:12:37.414 There are blood tests which are making progress 00:12:37.438 --> 00:12:41.494 that would pick up Down syndrome more clearly and earlier in pregnancies 00:12:41.518 --> 00:12:42.673 than ever before, 00:12:42.697 --> 00:12:47.587 making it easier and easier for people to eliminate those pregnancies, 00:12:47.611 --> 00:12:48.934 or to terminate them. NOTE Paragraph 00:12:48.958 --> 00:12:53.913 So we have both social progress and medical progress. 00:12:53.937 --> 00:12:55.519 And I believe in both of them. 00:12:55.543 --> 00:12:59.834 I believe the social progress is fantastic and meaningful and wonderful, 00:12:59.858 --> 00:13:02.816 and I think the same thing about the medical progress. 00:13:02.840 --> 00:13:07.179 But I think it's a tragedy when one of them doesn't see the other. 00:13:07.203 --> 00:13:09.251 And when I see the way they're intersecting 00:13:09.275 --> 00:13:11.651 in conditions like the three I've just described, 00:13:11.675 --> 00:13:15.296 I sometimes think it's like those moments in grand opera 00:13:15.320 --> 00:13:17.877 when the hero realizes he loves the heroine 00:13:17.901 --> 00:13:22.165 at the exact moment that she lies expiring on a divan. NOTE Paragraph 00:13:22.189 --> 00:13:24.564 (Laughter) NOTE Paragraph 00:13:25.401 --> 00:13:28.876 We have to think about how we feel about cures altogether. 00:13:28.900 --> 00:13:31.712 And a lot of the time the question of parenthood is: 00:13:31.736 --> 00:13:33.487 What do we validate in our children, 00:13:33.511 --> 00:13:35.316 and what do we cure in them? NOTE Paragraph 00:13:35.340 --> 00:13:39.487 Jim Sinclair, a prominent autism activist, said, 00:13:39.511 --> 00:13:44.088 "When parents say, 'I wish my child did not have autism,' 00:13:44.112 --> 00:13:48.923 what they're really saying is, 'I wish the child I have did not exist 00:13:48.947 --> 00:13:52.299 and I had a different, nonautistic child instead.' 00:13:52.858 --> 00:13:57.964 Read that again. This is what we hear when you mourn over our existence. 00:13:57.988 --> 00:14:01.013 This is what we hear when you pray for a cure: 00:14:01.037 --> 00:14:05.439 that your fondest wish for us is that someday we will cease to be, 00:14:05.463 --> 00:14:10.082 and strangers you can love will move in behind our faces." 00:14:11.241 --> 00:14:13.710 It's a very extreme point of view, 00:14:13.734 --> 00:14:18.047 but it points to the reality that people engage with the life they have 00:14:18.071 --> 00:14:22.612 and they don't want to be cured or changed or eliminated. 00:14:22.636 --> 00:14:25.698 They want to be whoever it is that they've come to be. NOTE Paragraph 00:14:26.245 --> 00:14:29.856 One of the families I interviewed for this project 00:14:29.880 --> 00:14:31.607 was the family of Dylan Klebold, 00:14:31.631 --> 00:14:35.016 who was one of the perpetrators of the Columbine massacre. 00:14:35.040 --> 00:14:37.681 It took a long time to persuade them to talk to me, 00:14:37.705 --> 00:14:40.329 and once they agreed, they were so full of their story 00:14:40.353 --> 00:14:42.049 that they couldn't stop telling it, 00:14:42.073 --> 00:14:44.872 and the first weekend I spent with them, the first of many, 00:14:44.896 --> 00:14:47.882 I recorded more than 20 hours of conversation. NOTE Paragraph 00:14:47.906 --> 00:14:49.928 And on Sunday night, we were all exhausted. 00:14:49.952 --> 00:14:53.192 We were sitting in the kitchen. Sue Klebold was fixing dinner. 00:14:53.216 --> 00:14:55.866 And I said, "If Dylan were here now, 00:14:55.890 --> 00:14:58.537 do you have a sense of what you'd want to ask him?" 00:14:58.561 --> 00:15:00.765 And his father said, "I sure do. 00:15:00.789 --> 00:15:03.634 I'd want to ask him what the hell he thought he was doing." 00:15:04.068 --> 00:15:07.326 And Sue looked at the floor, and she thought for a minute. 00:15:08.286 --> 00:15:10.631 And then she looked back up and said, 00:15:10.655 --> 00:15:14.288 "I would ask him to forgive me for being his mother 00:15:14.312 --> 00:15:17.393 and never knowing what was going on inside his head." NOTE Paragraph 00:15:18.586 --> 00:15:21.531 When I had dinner with her a couple of years later -- 00:15:21.555 --> 00:15:23.768 one of many dinners that we had together -- 00:15:23.792 --> 00:15:26.648 she said, "You know, when it first happened, 00:15:26.672 --> 00:15:30.731 I used to wish that I had never married, that I had never had children. 00:15:30.755 --> 00:15:34.182 If I hadn't gone to Ohio State and crossed paths with Tom, 00:15:34.206 --> 00:15:35.903 this child wouldn't have existed, 00:15:35.927 --> 00:15:38.135 and this terrible thing wouldn't have happened. 00:15:38.159 --> 00:15:42.188 But I've come to feel that I love the children I had so much 00:15:42.212 --> 00:15:44.919 that I don't want to imagine a life without them. 00:15:45.563 --> 00:15:48.410 I recognize the pain they caused to others, 00:15:48.434 --> 00:15:50.548 for which there can be no forgiveness, 00:15:50.572 --> 00:15:54.131 but the pain they caused to me, there is," she said. 00:15:54.155 --> 00:15:57.743 "So while I recognize that it would have been better for the world 00:15:57.767 --> 00:16:00.313 if Dylan had never been born, 00:16:00.337 --> 00:16:04.532 I've decided that it would not have been better for me." NOTE Paragraph 00:16:06.420 --> 00:16:07.938 I thought it was surprising 00:16:07.962 --> 00:16:10.614 how all of these families had all of these children 00:16:10.638 --> 00:16:12.104 with all of these problems, 00:16:12.128 --> 00:16:15.180 problems that they mostly would have done anything to avoid, 00:16:15.204 --> 00:16:19.094 and that they had all found so much meaning in that experience of parenting. 00:16:19.118 --> 00:16:22.241 And then I thought, all of us who have children 00:16:22.265 --> 00:16:25.176 love the children we have, with their flaws. 00:16:25.200 --> 00:16:29.129 If some glorious angel suddenly descended through my living-room ceiling 00:16:29.153 --> 00:16:31.355 and offered to take away the children I have 00:16:31.379 --> 00:16:33.708 and give me other, better children -- 00:16:33.732 --> 00:16:37.178 more polite, funnier, nicer, smarter -- NOTE Paragraph 00:16:37.202 --> 00:16:38.411 (Laughter) NOTE Paragraph 00:16:38.435 --> 00:16:43.029 I would cling to the children I have and pray away that atrocious spectacle. 00:16:43.053 --> 00:16:44.422 And ultimately, 00:16:44.446 --> 00:16:48.931 I feel that in the same way that we test flame-retardant pajamas in an inferno 00:16:48.955 --> 00:16:53.140 to ensure they won't catch fire when our child reaches across the stove, 00:16:53.164 --> 00:16:57.177 so these stories of families negotiating these extreme differences 00:16:57.201 --> 00:16:59.864 reflect on the universal experience of parenting, 00:16:59.888 --> 00:17:04.408 which is always that sometimes, you look at your child, and you think, 00:17:04.432 --> 00:17:06.368 "Where did you come from?" NOTE Paragraph 00:17:06.392 --> 00:17:08.916 (Laughter) NOTE Paragraph 00:17:08.940 --> 00:17:13.653 It turns out that while each of these individual differences is siloed -- 00:17:13.677 --> 00:17:16.462 there are only so many families dealing with schizophrenia, 00:17:16.486 --> 00:17:19.084 only so many families of children who are transgender, 00:17:19.108 --> 00:17:20.970 only so many families of prodigies -- 00:17:20.994 --> 00:17:23.483 who also face similar challenges in many ways -- 00:17:23.507 --> 00:17:26.354 there are only so many families in each of those categories. 00:17:26.378 --> 00:17:27.613 But if you start to think 00:17:27.637 --> 00:17:31.145 that the experience of negotiating difference within your family 00:17:31.169 --> 00:17:33.248 is what people are addressing, 00:17:33.272 --> 00:17:36.593 then you discover that it's a nearly universal phenomenon. 00:17:36.617 --> 00:17:38.247 Ironically, it turns out, 00:17:38.271 --> 00:17:41.679 that it's our differences and our negotiation of difference 00:17:41.703 --> 00:17:42.957 that unite us. NOTE Paragraph 00:17:43.832 --> 00:17:48.832 I decided to have children while I was working on this project. 00:17:49.292 --> 00:17:52.490 And many people were astonished and said, 00:17:52.514 --> 00:17:54.513 "But how can you decide to have children 00:17:54.537 --> 00:17:57.518 in the midst of studying everything that can go wrong?" 00:17:58.550 --> 00:18:01.656 And I said, "I'm not studying everything that can go wrong. 00:18:01.680 --> 00:18:04.792 What I'm studying is how much love there can be, 00:18:04.816 --> 00:18:08.856 even when everything appears to be going wrong." NOTE Paragraph 00:18:09.499 --> 00:18:15.040 I thought a lot about the mother of one disabled child I had seen, 00:18:15.064 --> 00:18:18.650 a severely disabled child who died through caregiver neglect. 00:18:18.674 --> 00:18:21.698 And when his ashes were interred, his mother said, 00:18:22.745 --> 00:18:29.656 "I pray here for forgiveness for having been twice robbed: 00:18:29.680 --> 00:18:32.392 once of the child I wanted, 00:18:32.416 --> 00:18:35.020 and once of the son I loved." 00:18:35.577 --> 00:18:40.107 And I figured it was possible, then, for anyone to love any child, 00:18:40.131 --> 00:18:42.469 if they had the effective will to do so. NOTE Paragraph 00:18:43.003 --> 00:18:47.966 So, my husband is the biological father of two children 00:18:47.990 --> 00:18:50.095 with some lesbian friends in Minneapolis. 00:18:51.293 --> 00:18:54.802 I had a close friend from college who'd gone through a divorce 00:18:54.826 --> 00:18:56.490 and wanted to have children. 00:18:56.514 --> 00:18:58.227 And so she and I have a daughter, 00:18:58.251 --> 00:19:00.466 and mother and daughter live in Texas. 00:19:00.490 --> 00:19:03.838 And my husband and I have a son who lives with us all the time, 00:19:03.862 --> 00:19:06.222 of whom I am the biological father, 00:19:06.246 --> 00:19:09.970 and our surrogate for the pregnancy was Laura, 00:19:09.994 --> 00:19:12.771 the lesbian mother of Oliver and Lucy in Minneapolis. NOTE Paragraph 00:19:12.795 --> 00:19:14.222 (Laughter) NOTE Paragraph 00:19:14.246 --> 00:19:15.405 So -- NOTE Paragraph 00:19:15.429 --> 00:19:22.131 (Applause) NOTE Paragraph 00:19:22.155 --> 00:19:26.530 The shorthand is: five parents of four children in three states. NOTE Paragraph 00:19:26.554 --> 00:19:27.648 (Laughter) NOTE Paragraph 00:19:27.672 --> 00:19:30.680 And there are people who think that the existence of my family 00:19:30.704 --> 00:19:35.193 somehow undermines or weakens or damages their family. 00:19:35.217 --> 00:19:38.747 And there are people who think that families like mine 00:19:38.771 --> 00:19:40.425 shouldn't be allowed to exist. 00:19:40.449 --> 00:19:44.349 And I don't accept subtractive models of love, 00:19:44.373 --> 00:19:45.752 only additive ones. 00:19:46.137 --> 00:19:49.640 And I believe that in the same way that we need species diversity 00:19:49.664 --> 00:19:52.089 to ensure that the planet can go on, 00:19:52.113 --> 00:19:56.390 so we need this diversity of affection and diversity of family 00:19:56.414 --> 00:19:59.693 in order to strengthen the ecosphere of kindness. NOTE Paragraph 00:20:01.082 --> 00:20:03.480 The day after our son was born, 00:20:03.504 --> 00:20:05.943 the pediatrician came into the hospital room 00:20:05.967 --> 00:20:07.858 and said she was concerned. 00:20:07.882 --> 00:20:11.000 He wasn't extending his legs appropriately. 00:20:11.024 --> 00:20:13.561 She said that might mean that he had brain damage. 00:20:13.585 --> 00:20:17.316 Insofar as he was extending them, he was doing so asymmetrically, 00:20:17.340 --> 00:20:21.054 which she thought could mean that there was a tumor of some kind in action. 00:20:21.078 --> 00:20:22.742 And he had a very large head, 00:20:22.766 --> 00:20:25.701 which she thought might indicate hydrocephalus. NOTE Paragraph 00:20:25.725 --> 00:20:27.613 And as she told me all of these things, 00:20:27.637 --> 00:20:31.458 I felt the very center of my being pouring out onto the floor. 00:20:31.482 --> 00:20:33.930 And I thought, "Here I had been working for years 00:20:33.954 --> 00:20:36.479 on a book about how much meaning people had found 00:20:36.503 --> 00:20:40.136 in the experience of parenting children who were disabled, 00:20:40.160 --> 00:20:43.638 and I didn't want to join their number 00:20:43.662 --> 00:20:46.436 because what I was encountering was an idea of illness." 00:20:46.460 --> 00:20:49.202 And like all parents since the dawn of time, 00:20:49.226 --> 00:20:52.203 I wanted to protect my child from illness. 00:20:52.227 --> 00:20:55.470 And I wanted, also, to protect myself from illness. 00:20:55.494 --> 00:20:58.241 And yet, I knew from the work I had done 00:20:58.265 --> 00:21:02.081 that if he had any of the things we were about to start testing for, 00:21:02.105 --> 00:21:05.068 that those would ultimately be his identity, 00:21:05.092 --> 00:21:09.131 and if they were his identity, they would become my identity, 00:21:09.155 --> 00:21:13.423 that that illness was going to take a very different shape as it unfolded. NOTE Paragraph 00:21:13.447 --> 00:21:16.576 We took him to the MRI machine, we took him to the CAT scanner, 00:21:16.600 --> 00:21:20.384 we took this day-old child and gave him over for an arterial blood draw. 00:21:20.408 --> 00:21:21.669 We felt helpless. 00:21:21.693 --> 00:21:23.350 And at the end of five hours, 00:21:23.374 --> 00:21:25.586 they said that his brain was completely clear 00:21:25.610 --> 00:21:28.388 and that he was by then extending his legs correctly. 00:21:28.412 --> 00:21:31.412 And when I asked the pediatrician what had been going on, 00:21:31.436 --> 00:21:35.596 she said she thought in the morning, he had probably had a cramp. NOTE Paragraph 00:21:35.620 --> 00:21:39.071 (Laughter) NOTE Paragraph 00:21:39.095 --> 00:21:40.357 But I thought -- NOTE Paragraph 00:21:40.381 --> 00:21:44.306 (Laughter) NOTE Paragraph 00:21:44.330 --> 00:21:46.929 I thought how my mother was right. 00:21:46.953 --> 00:21:50.425 I thought, "The love you have for your children 00:21:50.449 --> 00:21:53.811 is unlike any other feeling in the world. 00:21:53.835 --> 00:21:58.508 And until you have children, you don't know what it feels like. NOTE Paragraph 00:22:00.158 --> 00:22:02.294 I think children had ensnared me 00:22:02.318 --> 00:22:05.320 the moment I connected fatherhood with loss. 00:22:06.138 --> 00:22:08.172 But I'm not sure I would have noticed that 00:22:08.196 --> 00:22:12.540 if I hadn't been so in the thick of this research project of mine. 00:22:13.462 --> 00:22:16.578 I'd encountered so much strange love, 00:22:16.602 --> 00:22:20.323 and I fell very naturally into its bewitching patterns. 00:22:20.347 --> 00:22:26.220 And I saw how splendor can illuminate even the most abject vulnerabilities. NOTE Paragraph 00:22:27.206 --> 00:22:30.988 During these 10 years, I had witnessed and learned 00:22:31.012 --> 00:22:34.564 the terrifying joy of unbearable responsibility, 00:22:34.588 --> 00:22:37.676 and I had come to see how it conquers everything else. 00:22:38.264 --> 00:22:42.313 And while I had sometimes thought the parents I was interviewing were fools, 00:22:42.337 --> 00:22:47.334 enslaving themselves to a lifetime's journey with their thankless children 00:22:47.358 --> 00:22:50.516 and trying to breed identity out of misery, 00:22:50.540 --> 00:22:55.163 I realized that day that my research had built me a plank 00:22:55.187 --> 00:22:57.701 and that I was ready to join them on their ship. NOTE Paragraph 00:22:58.581 --> 00:22:59.789 Thank you. NOTE Paragraph 00:22:59.813 --> 00:23:06.792 (Applause and cheers) 00:23:08.096 --> 00:23:09.246 Thank you.