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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“就算拋開宗教信仰的因素， 同性戀也是性濫交的代名詞 它是可悲的，次等的， 一種現(xiàn)實的替代品 是人生中一段令人遺憾的旅程 因此，同性戀不值得同情 也不值得治療 因為只有少數(shù)人為此受難 同性戀只值得視為一種有害的疾病" 0:44上述的話選自1966年發(fā)行的 《時代》雜志，那時我只有三歲. 但是就在去年，美國總統(tǒng) 站出來表示支持同性戀婚姻 0:56(鼓掌) 1:03我的問題是，我們是如何實現(xiàn)這種態(tài)度的轉(zhuǎn)變？ 曾經(jīng)的疾病是如何成為現(xiàn)在的一種身份認同？ 1:14當(dāng)我差不多六歲的時候 我和媽媽還有弟弟去一家鞋店 最后，當(dāng)我們付款買鞋子的時候 售貨員告訴我們， 我們每個人可以挑選一個氣球帶回家 我的弟弟想要一個紅色的氣球， 我想要粉色的氣球 而我的母親說她覺得我應(yīng)該選一個藍色的氣球 但是我說我想要的毫無疑問是粉色的氣球 她提醒我，我最喜歡的顏色是藍色 其結(jié)果是，我現(xiàn)在最喜歡的顏色是藍色， 但我依舊是個同性戀者 (笑聲) 這既反應(yīng)了母親對孩子的影響， 也反應(yīng)了這其中的局限性 1:57(笑聲) 1:59(鼓掌) 2:06當(dāng)我很小的時候， 母親曾經(jīng)說過 "父母對子女的愛是世界上 其它一切感情都無法比擬的， 只有當(dāng)你擁有自己的孩子時， 你才能體會到" 我小的時候，把母親講的 關(guān)于撫育我和弟弟的這段話 當(dāng)成是世界上最高稱贊當(dāng)我成為一個青少年的時候，我想 我是同性戀， 所以我可能不會有自己的家庭 當(dāng)母親說那些話的時候， 我就會感到很焦慮 當(dāng)我的事公之于眾后, 母親還重提此事, 我感到很惱火 我說：“我是同性戀。我不會走那條路。 我希望你不要再說那些話了?！?br/> 2:46大約二十年前， 《紐約時報》主編讓我 寫一篇關(guān)于聾人文化的文章 我感到很驚訝 我原以為耳聾就是一種疾病 那些可憐的人呀， 他們什么都聽不見 如果他們聽不見， 我們能為他們做什么呢？ 接下來，我走進了聾人世界 我去了聾人俱樂部 觀看了聾人的表演 我甚至去了田納西州納什維爾的 “美國聾人小姐”選秀賽 居然有人抱怨她們甜膩的南方手語“口音” 3:20（笑聲） 3:24隨著越來越融入聾人世界 我開始相信耳聾是一種文化 并且聾人世界中的人也說， "我們不是聽力不健全， 我們是一種文化，" 這是可行的 這不是我的文化 我也沒想沖過去加入這種文化 但我欣賞它是一種文化 對其中的成員而言 它的價值就如同拉美文化， 同性戀文化或猶太文化 它甚至可以和美國文化相媲美 4:00我朋友的朋友有個女兒，是個小矮人 當(dāng)她女兒出生的時候 她突然發(fā)現(xiàn)她要面對很多問題 這些問題使我產(chǎn)生共鳴 她當(dāng)時面臨的問題是--該如何對待這個孩子？ 她應(yīng)該說“你和其他人一樣，只是矮了點兒”？ 還是去試圖建立某種小矮人身份認同 加入美國小個子聯(lián)盟 開始了解矮人生活圈的那些事？ 4:26然后我突然想到 大多數(shù)耳聾孩子的父母 都是聽力健全的 那些聽力健全的父母 總是試圖去治愈他們的孩子那些聾人要差不多到青春期的時候 才開始接觸聾人群體 大多數(shù)同性戀者的父母是異性戀 那些異性戀父母常常希望 他們的孩子表現(xiàn)得 如他們認為的主流世界所期望的那樣 那些同性戀者不得不長大后才尋找身份認同再說說我的這個朋友 面對這些關(guān)于她小矮人女兒身份認同的問題 然后我想，又是這樣 一個認為自己正常的家庭 有著一個特殊的孩子 我想，事實上 身份認同分為兩種類型 5:04有垂直身份認同 從父母到孩子，代代相傳 也有像是種族，國際，語言，宗教 你和你的父母,孩子擁有共同點, 而有些身份較難識別, 但并不需要嘗試去改變 你可以爭辯說，在美國 作為有色人種生存艱難 盡管我們現(xiàn)任的總統(tǒng)是有色人種 確實，沒人試圖去保證 非洲裔美國人，亞洲裔的孩子們 生來就有著奶油色的皮膚和金黃的頭發(fā) 5:40還有一些身份認同 是你從同齡人群中獲得的 我稱它們?yōu)樗缴矸菡J同 因為和同伴一起活動， 接觸，是所謂的一種經(jīng)驗 這些身份認同與你從父母處得來的不同 你需要通過接觸同伴自己發(fā)掘 這種身份認同， 我指的是水平身份認同 就是人們最希望去治愈的部分 6:03我想要研究的是， 這是怎樣的過程 有著這些身份認同的人們 是怎么和他們保持好的關(guān)系的 在我看來，有三種 不同程度的接受 這三種是，自我接受，家庭接納，社會接納 它們并不一定同步發(fā)生 6:24很多時候，這樣的人很易怒 因為他們覺得， 他們的父母并不愛他們 真實的情況是， 他的父母不接受他們最理想的愛就是父母和孩子 之間那種無條件的愛 但接受是需要時間 接受總是需要時間的 6:47我認識的一個小矮人 名叫克林頓布朗 他出生的時候 就被診斷為畸形侏儒癥 他的殘疾非常嚴(yán)重 他的父母被告知， 他永久喪失行走能力和語言能力 他也沒有獲取知識的能力 他甚至也不會認識他的父母 醫(yī)院給他父母的建議是 把他留在醫(yī)院 他可以在那里平靜地離世 7:11他的母親說， 她不會這樣做 她把她的兒子帶回了家 盡管她沒有什么學(xué)歷， 也不是很富有 她還是找到了治療畸形侏儒癥 全國最頂級的醫(yī)生 她讓克林頓接受治療 他的童年 經(jīng)歷了 30次重大外科手術(shù) 他一直待在醫(yī)院里 而正是這些治療過程 讓他現(xiàn)在有了行走的能力 7:36他在住院期間， 醫(yī)院請了家庭教師來指導(dǎo)他的功課 他學(xué)習(xí)非常努力， 因為他沒有別的事可做 最終，他達到了 他家庭內(nèi)任何成員 都從未達到過的高度 他是他的家庭成員里 第一個去上大學(xué)的人 他住在學(xué)校宿舍并且自己開車 一輛為他身體狀況特別制造的汽車 7:58他的母親告訴我一個故事 他去了家附近的大學(xué) 她說 "我看到了那部車， 一眼就認出來是他的車子 停在一家酒吧的停車場，" （笑聲） "我想了想， 他們六英尺高，他三英尺高 他們喝兩瓶啤酒， 在他那里就相當(dāng)于四瓶啤酒"。 她說，"我知道我不能走進去打擾他 但我回家之后， 給他發(fā)了八條短信 她說，"我想 在他出生的時候， 如果有人對我說， 我未來的擔(dān)心是 他會和他大學(xué)友人酒后駕車" 8:33（掌聲） 8:42我對她說， "你覺得你做了什么 幫他成為一個有魅力、 成功、 精彩的人嗎?" 她說，"我做了什么？ 我愛他，就這樣 克林頓一直都有這樣的光芒， 他的父親和我很幸運， 最早看見了他的光芒?！?br/> 9:03我要去引述1960年代 另一家雜志刊載的話 這是1968 年出版的大西洋月刊， 美國的自由主義之聲 作者是知名的生物倫理學(xué)專家 他說，"對于遺棄唐氏綜合癥的嬰孩 我們不必感到內(nèi)疚 無論是將其送到療養(yǎng)院去 或者用更負責(zé)也更致命的方式 這很可悲，也很可怕 但不需要有罪惡感 真正有內(nèi)疚只源于侵犯人， 而唐氏綜合癥患者不是人?！?br/> 9:44關(guān)于同性戀者處境的大幅度進步 已經(jīng)有很多文章就此發(fā)表觀點 每天都有頭條報導(dǎo) 人們對同性戀的態(tài)度已有所轉(zhuǎn)變 但我們遺忘了過去是怎么看待 不同于大眾的人 忘了過去是怎么看待殘障人士的 忘了我們曾經(jīng)多么不人道 在那些方面的改變 幾乎同樣激進 我們卻未給予更多的重視 10:10我采訪過羅巴茲家族的 湯姆和凱倫夫婦 他們當(dāng)年是年輕有為的紐約人 在得知他們第一個孩子 患有唐氏綜合征時大為驚訝 他們認為兒子并未得到應(yīng)有的教育 于是他們決定成立一個小型教育機構(gòu) 兩間教室里， 他們開始和其他的父母 一起教育唐氏綜合癥兒童 多年后， 該機構(gòu)發(fā)展為庫克中心 現(xiàn)在有成千上萬的 智障兒童在這里接受教育 10:46自從大西洋月刊 刊載了那片文章以來 唐氏綜合征患者的壽命 增加了兩倍 唐氏綜合征的人有些是演員 作家，有些在成年后 能完全獨立生活 11:04羅巴茲夫婦的貢獻很大 我問他們：“你們會遺憾嗎？ 你們希望自己的孩子 沒有唐氏綜合征嗎？ 是否希望從未聽說過這種病癥?" 有趣的是這位父親說， "嗯，從我們的兒子大衛(wèi)角度來看， 我感到遺憾， 因為對于大衛(wèi)來說， 這個世界里唐氏患兒的路走得非常艱辛 我想要給大衛(wèi)更輕松的生活 但我認為，如果世界上不再有唐氏癥患兒， 會是很大的損失。” 11:28凱倫羅巴茲說：“我同意湯姆的看法 為了讓大衛(wèi)活得更自在， 我會想瞬間治愈他的唐氏綜合癥 但對我來說， 23 年前他剛出生時，我絕不相信 我能走到今天這一步 對我來說，他的病 讓我成為更好，更善良的人讓我的人生更有意義 對我來說，這樣的經(jīng)驗 是世界上任何其他東西都換不來的" 11:56現(xiàn)代社會對這樣那樣的病癥的接受程度 越來越高 然而，此時此刻 我們治愈這些病癥的能力 也已經(jīng)達到一個前所未有的高度 現(xiàn)在美國新生的耳聾嬰兒 都會接受人工耳蝸植入手術(shù)， 將人工耳蝸植入大腦 并連上接收器通過接收信號，這讓他們具有聽說的能力 有一種叫 BMN-111的化合物， 經(jīng)老鼠實驗 在抑制軟骨發(fā)育不全基因方面 非常有效 軟骨發(fā)育不全 是侏儒癥最常見的表現(xiàn)形式 有軟骨發(fā)育不全基因的小鼠 攝取BMN-11以后 可以生長到正常體型 臨床試驗指日可待 通過血液檢測唐氏綜合癥的技術(shù)也在進步 可以在懷孕早期 更明確地檢測出唐氏綜合癥 使它更容易盡早終止 唐氏綜合癥胎兒妊娠 12:59我們的社會進步了， 醫(yī)學(xué)也發(fā)展了 我認同這兩方面的進步 我相信社會的進步 精彩且有意義 我認為醫(yī)學(xué)的進步 也是如此 但我認為兩者互不理解 著實可悲 當(dāng)我看到他們交匯的方式 像我剛才描述的三個病例 我有時覺得這就像 那些悲壯的歌劇 當(dāng)英雄意識到 他愛上女主角的時候 就是女主角躺在長沙發(fā)上 奄奄一息 13:32（笑聲） 13:35我們要全盤考量對于治愈的態(tài)度 父母常常面對的問題是 孩子在哪些方面值得肯定 哪些方面需要治愈？ 13:46有名的自閉癥專家， 吉姆 · 辛克萊說， "當(dāng)父母說 '我希望我的孩子沒有自閉癥，' 他們真正的意思是 ' 我希望我的孩子并不存在 而希望有一個沒有自閉癥的孩子.' 聽仔細了，當(dāng)你們抱怨我們的存在， 我們聽到的就是這個意思 你們祈禱奇跡出現(xiàn)的時候，我們聽到的是 你們衷心希望 總有一天我們將不復(fù)存在 和我們長著相同面孔的陌生人將會取代我們， 得到你們所有的愛 這是一個非常極端的觀點， 但它指出了一個現(xiàn)實， 人們有自己的生活 他們不想要被治愈 或改變或消滅 他們希望，不管是誰， 都能保有與生俱來的天性 14:36為了這個項目 我采訪了迪倫科萊柏德的家庭 迪倫柯萊柏德是 哥倫拜恩校園慘案的罪犯之一 我花了很長的時間 說服他們跟我對話 他們同意了， 有太多的故事 一開口就無法停下來 我第一次和他們共度周末， 后來還有許多次 我錄了20 多個小時的談話內(nèi)容 14:58到了周日晚上， 大家都精疲力竭 我們坐在廚房里， 蘇在做晚飯 我說，"如果現(xiàn)在， 迪倫還在這里 你們想要問他些什么?" 他的父親說，"當(dāng)然 我想問問他 究竟為什么這樣做"。 蘇望著地板， 思考了一會兒 然后抬起頭來說， “我會請他原諒 我不是合格的好母親 從來不知道他的腦袋里 想的是些什么” 15:29幾年后， 我再度與她吃晚餐 那是我們曾經(jīng)許多共同的晚餐之一 她說，"你知道， 當(dāng)事情發(fā)生的時候 我曾經(jīng)希望我沒有結(jié)過婚， 也沒有孩子 如果我沒有到俄亥俄州立大學(xué)， 沒遇見湯姆 這個孩子就不會存在， 這可怕的慘案就不會發(fā)生 但我覺得我太愛孩子們了 我不愿想象沒有他們的生活 我承認他們對其他人造成的痛苦 是不可饒恕的 但我能寬恕他們對我造成的痛苦。"她說 "所以雖然我承認， 如果迪倫未曾出現(xiàn)在這個世界上世界會更美好 但我認為那樣對我并非更有好處 16:16令人驚訝的是， 這些家庭有這么多子女教育的問題 這些問題又是他們 常常不惜代價去避免的 但她們都發(fā)現(xiàn)養(yǎng)兒育女的經(jīng)驗 很有意義 然后我想， 我們這些有孩子的人 不管孩子如何， 我們都疼愛無比 如果帶著光環(huán)的天使 突然從客廳天花板降落 提議要帶走我的孩子 還給我一個更好的孩子， 更有禮貌，風(fēng)趣，友善，聰明我會緊抓住我自己的孩子， 祈禱殘忍地事情不要發(fā)生 我最終明白 就如同我們在火焰中測試防火睡衣 以確保孩子手伸到爐子上時不會著火 這些處理特殊情況的家庭的故事 反映了普世的育兒經(jīng)驗 有時候你看著孩子， 心里想 你從哪里來？ 17:17（笑聲） 17:19盡管他們各自面對不同的境況 只有一些家庭有精神分裂癥患者 只有一些家庭的孩子做了變性手術(shù) 只有一些家庭出現(xiàn)神童 在許多方面也面臨著相似的挑戰(zhàn) 每個類別也僅有一些家庭 但如果你開始思考 那些處理家人間分歧的經(jīng)驗 是出現(xiàn)在每個人生活中的 然后你發(fā)現(xiàn)這是一個普遍的現(xiàn)象 諷刺的是，事實證明， 正是我們的不同和我們協(xié)商彼此的不同 將我們連結(jié)起來 17:54當(dāng)我做這個項目的時候 我決定要孩子 很多人對此感到驚奇 "你怎么能做出要孩子的決定 當(dāng)你的研究是關(guān)于不如意的， 且只進行到一半?" 我說，"我研究的不是那些不如意 我研究的是， 有多少愛可以給予 甚至當(dāng)一切似乎 都是個錯誤的情況下"。 18:20我想起我見過的一個殘疾孩子的母親 這個有嚴(yán)重殘疾的孩子 因為照料不周而去世 當(dāng)他的骨灰被安葬的時候， 他的母親說 "我在這里祈禱寬恕， 我失去了兩個 一個是我想要的孩子， 一個是我所愛著的兒子” 我以為任何一個人 都可以去愛任何孩子 如果他們有能力就會這樣做 18:53我的丈夫是 兩個孩子的親生父親 這兩個孩子的母親是 他在明尼阿波利斯市的女同性戀朋友 我大學(xué)時期有一個親密的朋友， 她離了婚卻也想要孩子 所以我和她生了一個女兒 母親和女兒居住在德克薩斯州 我丈夫和我有個兒子 和我們一起生活 我是他的生父 為我們代孕的女士是勞拉 她是明尼阿波利斯市奧利弗和露西的 女同性戀母親 19:23（掌聲） 19:32五位父母，生了四個孩子， 生活在三個不同的州 19:38當(dāng)然有些人會認為， 這樣的家庭的存在 在某種程度上破壞或削弱 甚至損害了他們的家庭 也有些人認為 像我們這樣的家庭 不應(yīng)該被允許存在 我不接受消減中的愛， 只求遞增的愛 同時我也相信， 我們需要物種的多樣性 來確保地球可以延續(xù)下去 因此，我們需要 這種多樣化的感情和家庭 來強化仁慈的生物圈 20:11在我們兒子出生后的第二天 兒科醫(yī)生走進病房說 她很擔(dān)心 他沒有適當(dāng)?shù)厣煺顾碾p腿 她說這可能意味著他有腦損傷 當(dāng)他伸腿時，又很不對稱 她以為這可能意味著 有某種類型的腫瘤 他的頭非常大， 她認為這可能意味著他有腦積水 20:36當(dāng)她告訴我這些事情的時候 我覺得我的身體要倒下去似的 我想，我花很多年寫的書 關(guān)于人們養(yǎng)育殘疾子女的經(jīng)驗 給他們帶來了怎樣的意義 但我還是不想加入他們 我想到的是疾病 就像所有的父母那樣， 從孩子出生那刻起 我想要我的孩子健康 同時我也想自己遠離疾病 我的工作經(jīng)驗讓我得知 如果經(jīng)過哪些檢查， 發(fā)現(xiàn)他有什么問題 那將永久成為他的特性 如果這是他的特性，也將會是我的特性 這將不同于病癥最初呈現(xiàn)的那樣 21:24我們帶他做核磁共振， 帶他做計算機化X射線軸向分層造影 我們帶著這個出生僅一天的孩子做動脈抽血 我們感到無助 五個小時后， 醫(yī)生們說他的大腦完全沒問題 也可以完全正常伸展他的雙腿 當(dāng)我問兒科醫(yī)生這是怎么回事， 她說，她覺得早上他可能抽筋了 21:46（笑聲） 21:50我認為我的母親是正確的 我以為你對自己孩子的愛 是不同于世界上任何其他感覺的 直到你有孩子， 你才知道那是什么樣的感覺 22:10我想是孩子讓我 認為自己不是個稱職的父親 但我不確定自己會注意到 要不是我做了這么繁復(fù)的研究項目，我遇到了太多奇怪的愛， 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處 22:37在這 10 年期間，我曾目睹和了解到 那些難以承受的責(zé)任， 我也看到了它如何克服一切苦難 我曾經(jīng)有時會想， 我正在采訪的父母是傻瓜 讓自己踏上給不知感恩的孩子們一生為奴的旅程 試圖從痛苦中獲得身份認同我意識到，從研究開始那天起， 我已建造了一塊踏板 隨時準(zhǔn)備著與他們同舟共濟 23:09謝謝 23:10（掌聲） |
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來自： Rivalry > 《影視戲劇文學(xué)》
