0:11"Even in purely non-religious terms, homosexuality represents a misuse of the sexual faculty. It is a pathetic little second-rate substitute for reality -- a pitiable flight from life. As such, it deserves no compassion, it deserves no treatment as minority martyrdom, and it deserves not to be deemed anything but a pernicious sickness."
0:44That's from Time magazine in 1966, when I was three years old. And last year, the president of the United States came out in favor of gay marriage.
0:56(Applause)
1:03And my question is, how did we get from there to here? How did an illness become an identity?
1:14When I was perhaps six years old, I went to a shoe store with my mother and my brother. And at the end of buying our shoes, the salesman said to us that we could each have a balloon to take home. My brother wanted a red balloon, and I wanted a pink balloon. My mother said that she thought I'd really rather have a blue balloon. But I said that I definitely wanted the pink one. And she reminded me that my favorite color was blue. The fact that my favorite color now is blue, but I'm still gay -- (Laughter) -- is evidence of both my mother's influence and its limits.
1:57(Laughter)
1:59(Applause)
2:06When I was little, my mother used to say, "The love you have for your children is like no other feeling in the world. And until you have children, you don't know what it's like." And when I was little, I took it as the greatest compliment in the world that she would say that about parenting my brother and me. And when I was an adolescent, I thought that I'm gay, and so I probably can't have a family. And when she said it, it made me anxious. And after I came out of the closet, when she continued to say it, it made me furious. I said, "I'm gay. That's not the direction that I'm headed in. And I want you to stop saying that."
2:46About 20 years ago, I was asked by my editors at The New York Times Magazine to write a piece about deaf culture. And I was rather taken aback. I had thought of deafness entirely as an illness. Those poor people, they couldn't hear. They lacked hearing, and what could we do for them? And then I went out into the deaf world. I went to deaf clubs. I saw performances of deaf theater and of deaf poetry. I even went to the Miss Deaf America contest in Nashville, Tennessee where people complained about that slurry Southern signing.
3:20(Laughter)
3:24And as I plunged deeper and deeper into the deaf world, I become convinced that deafness was a culture and that the people in the deaf world who said, "We don't lack hearing, we have membership in a culture," were saying something that was viable. It wasn't my culture, and I didn't particularly want to rush off and join it, but I appreciated that it was a culture and that for the people who were members of it, it felt as valuable as Latino culture or gay culture or Jewish culture. It felt as valid perhaps even as American culture.
4:00Then a friend of a friend of mine had a daughter who was a dwarf. And when her daughter was born,she suddenly found herself confronting questions that now began to seem quite resonant to me. She was facing the question of what to do with this child. Should she say, "You're just like everyone else but a little bit shorter?" Or should she try to construct some kind of dwarf identity, get involved in the Little People of America, become aware of what was happening for dwarfs?
4:26And I suddenly thought, most deaf children are born to hearing parents. Those hearing parents tend to try to cure them. Those deaf people discover community somehow in adolescence. Most gay people are born to straight parents. Those straight parents often want them to function in what they think of as the mainstream world, and those gay people have to discover identity later on. And here was this friend of mine looking at these questions of identity with her dwarf daughter. And I thought, there it is again: A family that perceives itself to be normal with a child who seems to be extraordinary. And I hatched the idea that there are really two kinds of identity.
5:04There are vertical identities, which are passed down generationally from parent to child. Those are things like ethnicity, frequently nationality, language, often religion. Those are things you have in common with your parents and with your children. And while some of them can be difficult, there's no attempt to cure them. You can argue that it's harder in the United States -- our current presidency notwithstanding -- to be a person of color. And yet, we have nobody who is trying to ensure that the next generation of children born to African-Americans and Asians come out with creamy skin and yellow hair.
5:40There are these other identities which you have to learn from a peer group. And I call them horizontal identities, because the peer group is the horizontal experience. These are identities that are alien to your parents and that you have to discover when you get to see them in peers. And those identities, those horizontal identities, people have almost always tried to cure.
6:03And I wanted to look at what the process is through which people who have those identities come to a good relationship with them. And it seemed to me that there were three levels of acceptance that needed to take place. There's self-acceptance, there's family acceptance, and there's social acceptance. And they don't always coincide.
6:24And a lot of the time, people who have these conditions are very angry because they feel as though their parents don't love them, when what actually has happened is that their parents don't accept them.Love is something that ideally is there unconditionally throughout the relationship between a parent and a child. But acceptance is something that takes time. It always takes time.
6:47One of the dwarfs I got to know was a guy named Clinton Brown. When he was born, he was diagnosed with diastrophic dwarfism, a very disabling condition, and his parents were told that he would never walk, he would never talk, he would have no intellectual capacity, and he would probably not even recognize them. And it was suggested to them that they leave him at the hospital so that he could die there quietly.
7:11And his mother said she wasn't going to do it. And she took her son home. And even though she didn't have a lot of educational or financial advantages, she found the best doctor in the country for dealing with diastrophic dwarfism, and she got Clinton enrolled with him. And in the course of his childhood, he had 30 major surgical procedures. And he spent all this time stuck in the hospital while he was having those procedures, as a result of which he now can walk.
7:36And while he was there, they sent tutors around to help him with his school work. And he worked very hard because there was nothing else to do. And he ended up achieving at a level that had never before been contemplated by any member of his family. He was the first one in his family, in fact, to go to college, where he lived on campus and drove a specially-fitted car that accommodated his unusual body.
7:58And his mother told me this story of coming home one day -- and he went to college nearby -- and she said, "I saw that car, which you can always recognize, in the parking lot of a bar," she said. (Laughter)"And I thought to myself, they're six feet tall, he's three feet tall. Two beers for them is four beers for him." She said, "I knew I couldn't go in there and interrupt him, but I went home, and I left him eight messages on his cell phone." She said, "And then I thought, if someone had said to me when he was born that my future worry would be that he'd go drinking and driving with his college buddies -- "
8:33(Applause)
8:42And I said to her, "What do you think you did that helped him to emerge as this charming, accomplished, wonderful person?" And she said, "What did I do? I loved him, that's all. Clinton just always had that light in him. And his father and I were lucky enough to be the first to see it there."
9:03I'm going to quote from another magazine of the '60s. This one is from 1968 -- The Atlantic Monthly, voice of liberal America -- written by an important bioethicist. He said, "There is no reason to feel guiltyabout putting a Down syndrome child away, whether it is put away in the sense of hidden in a sanitarium or in a more responsible, lethal sense. It is sad, yes -- dreadful. But it carries no guilt. True guilt arises only from an offense against a person, and a Down's is not a person."
9:44There's been a lot of ink given to the enormous progress that we've made in the treatment of gay people. The fact that our attitude has changed is in the headlines every day. But we forget how we used to see people who had other differences, how we used to see people who were disabled, how inhuman we held people to be. And the change that's been accomplished there, which is almost equally radical, is one that we pay not very much attention to.
10:10One of the families I interviewed, Tom and Karen Robards, were taken aback when, as young and successful New Yorkers, their first child was diagnosed with Down syndrome. They thought the educational opportunities for him were not what they should be, and so they decided they would build a little center -- two classrooms that they started with a few other parents -- to educate kids with D.S. And over the years, that center grew into something called the Cooke Center, where there are now thousands upon thousands of children with intellectual disabilities who are being taught.
10:46In the time since that Atlantic Monthly story ran, the life expectancy for people with Down syndrome has tripled. The experience of Down syndrome people includes those who are actors, those who are writers, some who are able to live fully independently in adulthood.
11:04The Robards had a lot to do with that. And I said, "Do you regret it? Do you wish your child didn't have Down syndrome? Do you wish you'd never heard of it?" And interestingly his father said, "Well, for David, our son, I regret it, because for David, it's a difficult way to be in the world, and I'd like to give David an easier life. But I think if we lost everyone with Down syndrome, it would be a catastrophic loss."
11:28And Karen Robards said to me, "I'm with Tom. For David, I would cure it in an instant to give him an easier life. But speaking for myself -- well, I would never have believed 23 years ago when he was bornthat I could come to such a point -- speaking for myself, it's made me so much better and so much kinder and so much more purposeful in my whole life, that speaking for myself, I wouldn't give it up for anything in the world."
11:56We live at a point when social acceptance for these and many other conditions is on the up and up.And yet we also live at the moment when our ability to eliminate those conditions has reached a height we never imagined before. Most deaf infants born in the United States now will receive Cochlear implants, which are put into the brain and connected to a receiver, and which allow them to acquire a facsimile of hearing and to use oral speech. A compound that has been tested in mice, BMN-111, is useful in preventing the action of the achondroplasia gene. Achondroplasia is the most common form of dwarfism, and mice who have been given that substance and who have the achondroplasia gene, grow to full size. Testing in humans is around the corner. There are blood tests which are making progressthat would pick up Down syndrome more clearly and earlier in pregnancies than ever before, making it easier and easier for people to eliminate those pregnancies, or to terminate them.
12:59And so we have both social progress and medical progress. And I believe in both of them. I believe the social progress is fantastic and meaningful and wonderful, and I think the same thing about the medical progress. But I think it's a tragedy when one of them doesn't see the other. And when I see the way they're intersecting in conditions like the three I've just described, I sometimes think it's like those moments in grand opera when the hero realizes he loves the heroine at the exact moment that she lies expiring on a divan.
13:32(Laughter)
13:35We have to think about how we feel about cures altogether. And a lot of the time the question of parenthood is, what do we validate in our children, and what do we cure in them?
13:46Jim Sinclair, a prominent autism activist, said, "When parents say 'I wish my child did not have autism,'what they're really saying is 'I wish the child I have did not exist and I had a different, non-autistic child instead.' Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure -- that your fondest wish for us is that someday we will cease to be and strangers you can love will move in behind our faces." It's a very extreme point of view, but it points to the reality that people engage with the life they have and they don't want to be cured or changed or eliminated. They want to be whoever it is that they've come to be.
14:36One of the families I interviewed for this project was the family of Dylan Klebold who was one of the perpetrators of the Columbine massacre. It took a long time to persuade them to talk to me, and once they agreed, they were so full of their story that they couldn't stop telling it. And the first weekend I spent with them -- the first of many -- I recorded more than 20 hours of conversation.
14:58And on Sunday night, we were all exhausted. We were sitting in the kitchen. Sue Klebold was fixing dinner. And I said, "If Dylan were here now, do you have a sense of what you'd want to ask him?" And his father said, "I sure do. I'd want to ask him what the hell he thought he was doing." And Sue looked at the floor, and she thought for a minute. And then she looked back up and said, "I would ask him to forgive me for being his mother and never knowing what was going on inside his head."
15:29When I had dinner with her a couple of years later -- one of many dinners that we had together -- she said, "You know, when it first happened, I used to wish that I had never married, that I had never had children. If I hadn't gone to Ohio State and crossed paths with Tom, this child wouldn't have existed and this terrible thing wouldn't have happened. But I've come to feel that I love the children I had so muchthat I don't want to imagine a life without them. I recognize the pain they caused to others, for which there can be no forgiveness, but the pain they caused to me, there is," she said. "So while I recognize that it would have been better for the world if Dylan had never been born, I've decided that it would not have been better for me."
16:16I thought it was surprising how all of these families had all of these children with all of these problems,problems that they mostly would have done anything to avoid, and that they had all found so much meaning in that experience of parenting. And then I thought, all of us who have children love the children we have, with their flaws. If some glorious angel suddenly descended through my living room ceiling and offered to take away the children I have and give me other, better children -- more polite, funnier, nicer, smarter -- I would cling to the children I have and pray away that atrocious spectacle.And ultimately I feel that in the same way that we test flame-retardant pajamas in an inferno to ensure they won't catch fire when our child reaches across the stove, so these stories of families negotiating these extreme differences reflect on the universal experience of parenting, which is always that sometimes you look at your child and you think, where did you come from?
17:17(Laughter)
17:19It turns out that while each of these individual differences is siloed -- there are only so many families dealing with schizophrenia, there are only so many families of children who are transgender, there are only so many families of prodigies -- who also face similar challenges in many ways -- there are only so many families in each of those categories -- but if you start to think that the experience of negotiating difference within your family is what people are addressing, then you discover that it's a nearly universal phenomenon. Ironically, it turns out, that it's our differences, and our negotiation of difference, that unite us.
17:54I decided to have children while I was working on this project. And many people were astonished and said, "But how can you decide to have children in the midst of studying everything that can go wrong?"And I said, "I'm not studying everything that can go wrong. What I'm studying is how much love there can be, even when everything appears to be going wrong."
18:20I thought a lot about the mother of one disabled child I had seen, a severely disabled child who died through caregiver neglect. And when his ashes were interred, his mother said, "I pray here for forgiveness for having been twice robbed, once of the child I wanted and once of the son I loved." And I figured it was possible then for anyone to love any child if they had the effective will to do so.
18:53So my husband is the biological father of two children with some lesbian friends in Minneapolis. I had a close friend from college who'd gone through a divorce and wanted to have children. And so she and I have a daughter, and mother and daughter live in Texas. And my husband and I have a son who lives with us all the time of whom I am the biological father, and our surrogate for the pregnancy was Laura,the lesbian mother of Oliver and Lucy in Minneapolis.
19:23(Applause)
19:32So the shorthand is five parents of four children in three states.
19:38And there are people who think that the existence of my family somehow undermines or weakens or damages their family. And there are people who think that families like mine shouldn't be allowed to exist. And I don't accept subtractive models of love, only additive ones. And I believe that in the same way that we need species diversity to ensure that the planet can go on, so we need this diversity of affection and diversity of family in order to strengthen the ecosphere of kindness.
20:11The day after our son was born, the pediatrician came into the hospital room and said she was concerned. He wasn't extending his legs appropriately. She said that might mean that he had brain damage. In so far as he was extending them, he was doing so asymmetrically, which she thought could mean that there was a tumor of some kind in action. And he had a very large head, which she thought might indicate hydrocephalus.
20:36And as she told me all of these things, I felt the very center of my being pouring out onto the floor. And I thought, here I had been working for years on a book about how much meaning people had found in the experience of parenting children who are disabled, and I didn't want to join their number. Because what I was encountering was an idea of illness. And like all parents since the dawn of time, I wanted to protect my child from illness. And I wanted also to protect myself from illness. And yet, I knew from the work I had done that if he had any of the things we were about to start testing for, that those would ultimately be his identity, and if they were his identity they would become my identity, that that illness was going to take a very different shape as it unfolded.
21:24We took him to the MRI machine, we took him to the CAT scanner, we took this day-old child and gave him over for an arterial blood draw. We felt helpless. And at the end of five hours, they said that his brain was completely clear and that he was by then extending his legs correctly. And when I asked the pediatrician what had been going on, she said she thought in the morning he had probably had a cramp.
21:46(Laughter)
21:50But I thought how my mother was right. I thought, the love you have for your children is unlike any other feeling in the world, and until you have children, you don't know what it feels like.
22:10I think children had ensnared me the moment I connected fatherhood with loss. But I'm not sure I would have noticed that if I hadn't been so in the thick of this research project of mine. I'd encountered so much strange love, and I fell very naturally into its bewitching patterns. And I saw how splendor can illuminate even the most abject vulnerabilities.
22:37During these 10 years, I had witnessed and learned the terrifying joy of unbearable responsibility, and I had come to see how it conquers everything else. And while I had sometimes thought the parents I was interviewing were fools, enslaving themselves to a lifetime's journey with their thankless children and trying to breed identity out of misery, I realized that day that my research had built me a plank and that I was ready to join them on their ship.
23:08Thank you.
23:10(Applause)
0:11“就算抛开宗教信仰的因素， 同性恋也是性滥交的代名词 它是可悲的，次等的， 一种现实的替代品 是人生中一段令人遗憾的旅程 因此，同性恋不值得同情 也不值得治疗 因为只有少数人为此受难 同性恋只值得视为一种有害的疾病"
0:44上述的话选自1966年发行的 《时代》杂志，那时我只有三岁. 但是就在去年，美国总统 站出来表示支持同性恋婚姻
0:56(鼓掌)
1:03我的问题是，我们是如何实现这种态度的转变？ 曾经的疾病是如何成为现在的一种身份认同？
1:14当我差不多六岁的时候 我和妈妈还有弟弟去一家鞋店 最后，当我们付款买鞋子的时候 售货员告诉我们， 我们每个人可以挑选一个气球带回家 我的弟弟想要一个红色的气球， 我想要粉色的气球 而我的母亲说她觉得我应该选一个蓝色的气球 但是我说我想要的毫无疑问是粉色的气球 她提醒我，我最喜欢的颜色是蓝色 其结果是，我现在最喜欢的颜色是蓝色， 但我依旧是个同性恋者 (笑声) 这既反应了母亲对孩子的影响， 也反应了这其中的局限性
1:57(笑声)
1:59(鼓掌)
2:06当我很小的时候， 母亲曾经说过 "父母对子女的爱是世界上 其它一切感情都无法比拟的， 只有当你拥有自己的孩子时， 你才能体会到" 我小的时候，把母亲讲的 关于抚育我和弟弟的这段话 当成是世界上最高称赞当我成为一个青少年的时候，我想 我是同性恋， 所以我可能不会有自己的家庭 当母亲说那些话的时候， 我就会感到很焦虑 当我的事公之于众后, 母亲还重提此事, 我感到很恼火 我说：“我是同性恋。我不会走那条路。 我希望你不要再说那些话了。”
2:46大约二十年前， 《纽约时报》主编让我 写一篇关于聋人文化的文章 我感到很惊讶 我原以为耳聋就是一种疾病 那些可怜的人呀， 他们什么都听不见 如果他们听不见， 我们能为他们做什么呢？ 接下来，我走进了聋人世界 我去了聋人俱乐部 观看了聋人的表演 我甚至去了田纳西州纳什维尔的 “美国聋人小姐”选秀赛 居然有人抱怨她们甜腻的南方手语“口音”
3:20（笑声）
3:24随着越来越融入聋人世界 我开始相信耳聋是一种文化 并且聋人世界中的人也说， "我们不是听力不健全， 我们是一种文化，" 这是可行的 这不是我的文化 我也没想冲过去加入这种文化 但我欣赏它是一种文化 对其中的成员而言 它的价值就如同拉美文化， 同性恋文化或犹太文化 它甚至可以和美国文化相媲美
4:00我朋友的朋友有个女儿，是个小矮人 当她女儿出生的时候 她突然发现她要面对很多问题 这些问题使我产生共鸣 她当时面临的问题是--该如何对待这个孩子？ 她应该说“你和其他人一样，只是矮了点儿”？ 还是去试图建立某种小矮人身份认同 加入美国小个子联盟 开始了解矮人生活圈的那些事？
4:26然后我突然想到 大多数耳聋孩子的父母 都是听力健全的 那些听力健全的父母 总是试图去治愈他们的孩子那些聋人要差不多到青春期的时候 才开始接触聋人群体 大多数同性恋者的父母是异性恋 那些异性恋父母常常希望 他们的孩子表现得 如他们认为的主流世界所期望的那样 那些同性恋者不得不长大后才寻找身份认同再说说我的这个朋友 面对这些关于她小矮人女儿身份认同的问题 然后我想，又是这样 一个认为自己正常的家庭 有着一个特殊的孩子 我想，事实上 身份认同分为两种类型
5:04有垂直身份认同 从父母到孩子，代代相传 也有像是种族，国际，语言，宗教 你和你的父母,孩子拥有共同点, 而有些身份较难识别, 但并不需要尝试去改变 你可以争辩说，在美国 作为有色人种生存艰难 尽管我们现任的总统是有色人种 确实，没人试图去保证 非洲裔美国人，亚洲裔的孩子们 生来就有着奶油色的皮肤和金黄的头发
5:40还有一些身份认同 是你从同龄人群中获得的 我称它们为水平身份认同 因为和同伴一起活动， 接触，是所谓的一种经验 这些身份认同与你从父母处得来的不同 你需要通过接触同伴自己发掘 这种身份认同， 我指的是水平身份认同 就是人们最希望去治愈的部分
6:03我想要研究的是， 这是怎样的过程 有着这些身份认同的人们 是怎么和他们保持好的关系的 在我看来，有三种 不同程度的接受 这三种是，自我接受，家庭接纳，社会接纳 它们并不一定同步发生
6:24很多时候，这样的人很易怒 因为他们觉得， 他们的父母并不爱他们 真实的情况是， 他的父母不接受他们最理想的爱就是父母和孩子 之间那种无条件的爱 但接受是需要时间 接受总是需要时间的
6:47我认识的一个小矮人 名叫克林顿布朗 他出生的时候 就被诊断为畸形侏儒症 他的残疾非常严重 他的父母被告知， 他永久丧失行走能力和语言能力 他也没有获取知识的能力 他甚至也不会认识他的父母 医院给他父母的建议是 把他留在医院 他可以在那里平静地离世
7:11他的母亲说， 她不会这样做 她把她的儿子带回了家 尽管她没有什么学历， 也不是很富有 她还是找到了治疗畸形侏儒症 全国最顶级的医生 她让克林顿接受治疗 他的童年 经历了 30次重大外科手术 他一直待在医院里 而正是这些治疗过程 让他现在有了行走的能力
7:36他在住院期间， 医院请了家庭教师来指导他的功课 他学习非常努力， 因为他没有别的事可做 最终，他达到了 他家庭内任何成员 都从未达到过的高度 他是他的家庭成员里 第一个去上大学的人 他住在学校宿舍并且自己开车 一辆为他身体状况特别制造的汽车
7:58他的母亲告诉我一个故事 他去了家附近的大学 她说 "我看到了那部车， 一眼就认出来是他的车子 停在一家酒吧的停车场，" （笑声） "我想了想， 他们六英尺高，他三英尺高 他们喝两瓶啤酒， 在他那里就相当于四瓶啤酒"。 她说，"我知道我不能走进去打扰他 但我回家之后， 给他发了八条短信 她说，"我想 在他出生的时候， 如果有人对我说， 我未来的担心是 他会和他大学友人酒后驾车"
8:33（掌声）
8:42我对她说， "你觉得你做了什么 帮他成为一个有魅力、 成功、 精彩的人吗?" 她说，"我做了什么？ 我爱他，就这样 克林顿一直都有这样的光芒， 他的父亲和我很幸运， 最早看见了他的光芒。”
9:03我要去引述1960年代 另一家杂志刊载的话 这是1968 年出版的大西洋月刊， 美国的自由主义之声 作者是知名的生物伦理学专家 他说，"对于遗弃唐氏综合症的婴孩 我们不必感到内疚 无论是将其送到疗养院去 或者用更负责也更致命的方式 这很可悲，也很可怕 但不需要有罪恶感 真正有内疚只源于侵犯人， 而唐氏综合症患者不是人。”
9:44关于同性恋者处境的大幅度进步 已经有很多文章就此发表观点 每天都有头条报导 人们对同性恋的态度已有所转变 但我们遗忘了过去是怎么看待 不同于大众的人 忘了过去是怎么看待残障人士的 忘了我们曾经多么不人道 在那些方面的改变 几乎同样激进 我们却未给予更多的重视
10:10我采访过罗巴兹家族的 汤姆和凯伦夫妇 他们当年是年轻有为的纽约人 在得知他们第一个孩子 患有唐氏综合征时大为惊讶 他们认为儿子并未得到应有的教育 于是他们决定成立一个小型教育机构 两间教室里， 他们开始和其他的父母 一起教育唐氏综合症儿童 多年后， 该机构发展为库克中心 现在有成千上万的 智障儿童在这里接受教育
10:46自从大西洋月刊 刊载了那片文章以来 唐氏综合征患者的寿命 增加了两倍 唐氏综合征的人有些是演员 作家，有些在成年后 能完全独立生活
11:04罗巴兹夫妇的贡献很大 我问他们：“你们会遗憾吗？ 你们希望自己的孩子 没有唐氏综合征吗？ 是否希望从未听说过这种病症?" 有趣的是这位父亲说， "嗯，从我们的儿子大卫角度来看， 我感到遗憾， 因为对于大卫来说， 这个世界里唐氏患儿的路走得非常艰辛 我想要给大卫更轻松的生活 但我认为，如果世界上不再有唐氏症患儿， 会是很大的损失。”
11:28凯伦罗巴兹说：“我同意汤姆的看法 为了让大卫活得更自在， 我会想瞬间治愈他的唐氏综合症 但对我来说， 23 年前他刚出生时，我绝不相信 我能走到今天这一步 对我来说，他的病 让我成为更好，更善良的人让我的人生更有意义 对我来说，这样的经验 是世界上任何其他东西都换不来的"
11:56现代社会对这样那样的病症的接受程度 越来越高 然而，此时此刻 我们治愈这些病症的能力 也已经达到一个前所未有的高度 现在美国新生的耳聋婴儿 都会接受人工耳蜗植入手术， 将人工耳蜗植入大脑 并连上接收器通过接收信号，这让他们具有听说的能力 有一种叫 BMN-111的化合物， 经老鼠实验 在抑制软骨发育不全基因方面 非常有效 软骨发育不全 是侏儒症最常见的表现形式 有软骨发育不全基因的小鼠 摄取BMN-11以后 可以生长到正常体型 临床试验指日可待 通过血液检测唐氏综合症的技术也在进步 可以在怀孕早期 更明确地检测出唐氏综合症 使它更容易尽早终止 唐氏综合症胎儿妊娠
12:59我们的社会进步了， 医学也发展了 我认同这两方面的进步 我相信社会的进步 精彩且有意义 我认为医学的进步 也是如此 但我认为两者互不理解 着实可悲 当我看到他们交汇的方式 像我刚才描述的三个病例 我有时觉得这就像 那些悲壮的歌剧 当英雄意识到 他爱上女主角的时候 就是女主角躺在长沙发上 奄奄一息
13:32（笑声）
13:35我们要全盘考量对于治愈的态度 父母常常面对的问题是 孩子在哪些方面值得肯定 哪些方面需要治愈？
13:46有名的自闭症专家， 吉姆 · 辛克莱说， "当父母说 '我希望我的孩子没有自闭症，' 他们真正的意思是 ' 我希望我的孩子并不存在 而希望有一个没有自闭症的孩子.' 听仔细了，当你们抱怨我们的存在， 我们听到的就是这个意思 你们祈祷奇迹出现的时候，我们听到的是 你们衷心希望 总有一天我们将不复存在 和我们长着相同面孔的陌生人将会取代我们， 得到你们所有的爱 这是一个非常极端的观点， 但它指出了一个现实， 人们有自己的生活 他们不想要被治愈 或改变或消灭 他们希望，不管是谁， 都能保有与生俱来的天性
14:36为了这个项目 我采访了迪伦科莱柏德的家庭 迪伦柯莱柏德是 哥伦拜恩校园惨案的罪犯之一 我花了很长的时间 说服他们跟我对话 他们同意了， 有太多的故事 一开口就无法停下来 我第一次和他们共度周末， 后来还有许多次 我录了20 多个小时的谈话内容
14:58到了周日晚上， 大家都精疲力竭 我们坐在厨房里， 苏在做晚饭 我说，"如果现在， 迪伦还在这里 你们想要问他些什么?" 他的父亲说，"当然 我想问问他 究竟为什么这样做"。 苏望着地板， 思考了一会儿 然后抬起头来说， “我会请他原谅 我不是合格的好母亲 从来不知道他的脑袋里 想的是些什么”
15:29几年后， 我再度与她吃晚餐 那是我们曾经许多共同的晚餐之一 她说，"你知道， 当事情发生的时候 我曾经希望我没有结过婚， 也没有孩子 如果我没有到俄亥俄州立大学， 没遇见汤姆 这个孩子就不会存在， 这可怕的惨案就不会发生 但我觉得我太爱孩子们了 我不愿想象没有他们的生活 我承认他们对其他人造成的痛苦 是不可饶恕的 但我能宽恕他们对我造成的痛苦。"她说 "所以虽然我承认， 如果迪伦未曾出现在这个世界上世界会更美好 但我认为那样对我并非更有好处
16:16令人惊讶的是， 这些家庭有这么多子女教育的问题 这些问题又是他们 常常不惜代价去避免的 但她们都发现养儿育女的经验 很有意义 然后我想， 我们这些有孩子的人 不管孩子如何， 我们都疼爱无比 如果带着光环的天使 突然从客厅天花板降落 提议要带走我的孩子 还给我一个更好的孩子， 更有礼貌，风趣，友善，聪明我会紧抓住我自己的孩子， 祈祷残忍地事情不要发生 我最终明白 就如同我们在火焰中测试防火睡衣 以确保孩子手伸到炉子上时不会着火 这些处理特殊情况的家庭的故事 反映了普世的育儿经验 有时候你看着孩子， 心里想 你从哪里来？
17:17（笑声）
17:19尽管他们各自面对不同的境况 只有一些家庭有精神分裂症患者 只有一些家庭的孩子做了变性手术 只有一些家庭出现神童 在许多方面也面临着相似的挑战 每个类别也仅有一些家庭 但如果你开始思考 那些处理家人间分歧的经验 是出现在每个人生活中的 然后你发现这是一个普遍的现象 讽刺的是，事实证明， 正是我们的不同和我们协商彼此的不同 将我们连结起来
17:54当我做这个项目的时候 我决定要孩子 很多人对此感到惊奇 "你怎么能做出要孩子的决定 当你的研究是关于不如意的， 且只进行到一半?" 我说，"我研究的不是那些不如意 我研究的是， 有多少爱可以给予 甚至当一切似乎 都是个错误的情况下"。
18:20我想起我见过的一个残疾孩子的母亲 这个有严重残疾的孩子 因为照料不周而去世 当他的骨灰被安葬的时候， 他的母亲说 "我在这里祈祷宽恕， 我失去了两个 一个是我想要的孩子， 一个是我所爱着的儿子” 我以为任何一个人 都可以去爱任何孩子 如果他们有能力就会这样做
18:53我的丈夫是 两个孩子的亲生父亲 这两个孩子的母亲是 他在明尼阿波利斯市的女同性恋朋友 我大学时期有一个亲密的朋友， 她离了婚却也想要孩子 所以我和她生了一个女儿 母亲和女儿居住在德克萨斯州 我丈夫和我有个儿子 和我们一起生活 我是他的生父 为我们代孕的女士是劳拉 她是明尼阿波利斯市奥利弗和露西的 女同性恋母亲
19:23（掌声）
19:32五位父母，生了四个孩子， 生活在三个不同的州
19:38当然有些人会认为， 这样的家庭的存在 在某种程度上破坏或削弱 甚至损害了他们的家庭 也有些人认为 像我们这样的家庭 不应该被允许存在 我不接受消减中的爱， 只求递增的爱 同时我也相信， 我们需要物种的多样性 来确保地球可以延续下去 因此，我们需要 这种多样化的感情和家庭 来强化仁慈的生物圈
20:11在我们儿子出生后的第二天 儿科医生走进病房说 她很担心 他没有适当地伸展他的双腿 她说这可能意味着他有脑损伤 当他伸腿时，又很不对称 她以为这可能意味着 有某种类型的肿瘤 他的头非常大， 她认为这可能意味着他有脑积水
20:36当她告诉我这些事情的时候 我觉得我的身体要倒下去似的 我想，我花很多年写的书 关于人们养育残疾子女的经验 给他们带来了怎样的意义 但我还是不想加入他们 我想到的是疾病 就像所有的父母那样， 从孩子出生那刻起 我想要我的孩子健康 同时我也想自己远离疾病 我的工作经验让我得知 如果经过哪些检查， 发现他有什么问题 那将永久成为他的特性 如果这是他的特性，也将会是我的特性 这将不同于病症最初呈现的那样
21:24我们带他做核磁共振， 带他做计算机化X射线轴向分层造影 我们带着这个出生仅一天的孩子做动脉抽血 我们感到无助 五个小时后， 医生们说他的大脑完全没问题 也可以完全正常伸展他的双腿 当我问儿科医生这是怎么回事， 她说，她觉得早上他可能抽筋了
21:46（笑声）
21:50我认为我的母亲是正确的 我以为你对自己孩子的爱 是不同于世界上任何其他感觉的 直到你有孩子， 你才知道那是什么样的感觉
22:10我想是孩子让我 认为自己不是个称职的父亲 但我不确定自己会注意到 要不是我做了这么繁复的研究项目，我遇到了太多奇怪的爱， 然后我很自然地陷入其迷人的模式 我看到光彩如何照亮最不幸的脆弱之处
22:37在这 10 年期间，我曾目睹和了解到 那些难以承受的责任， 我也看到了它如何克服一切苦难 我曾经有时会想， 我正在采访的父母是傻瓜 让自己踏上给不知感恩的孩子们一生为奴的旅程 试图从痛苦中获得身份认同我意识到，从研究开始那天起， 我已建造了一块踏板 随时准备着与他们同舟共济
23:09谢谢
23:10（掌声）
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