Love, no matter what | Andrew Solomon

1,020,666 views ・ 2013-06-03

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Translator: Timothy Covell Reviewer: Morton Bast
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"Even in purely nonreligious terms,
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homosexuality represents a misuse of the sexual faculty.
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It is a pathetic little second-rate substitute for reality --
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a pitiable flight from life.
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As such, it deserves no compassion,
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it deserves no treatment as minority martyrdom,
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and it deserves not to be deemed anything but a pernicious sickness."
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That's from "Time" magazine in 1966, when I was three years old.
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And last year, the president of the United States
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came out in favor of gay marriage.
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(Applause)
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And my question is:
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How did we get from there to here?
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How did an illness become an identity?
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When I was perhaps six years old,
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I went to a shoe store with my mother and my brother.
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And at the end of buying our shoes,
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the salesman said to us that we could each have a balloon to take home.
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My brother wanted a red balloon,
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and I wanted a pink balloon.
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My mother said that she thought I'd really rather have a blue balloon.
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(Laughter)
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But I said that I definitely wanted the pink one.
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And she reminded me that my favorite color was blue.
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The fact that my favorite color now is blue, but I'm still gay --
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(Laughter)
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is evidence of both my mother's influence
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and its limits.
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(Laughter)
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(Applause)
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When I was little, my mother used to say,
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"The love you have for your children is like no other feeling in the world.
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And until you have children, you don't know what it's like."
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And when I was little, I took it as the greatest compliment in the world
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that she would say that about parenting my brother and me.
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And when I was an adolescent, I thought, "But I'm gay,
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and so I probably can't have a family."
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And when she said it, it made me anxious.
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And after I came out of the closet,
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when she continued to say it, it made me furious.
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I said, "I'm gay. That's not the direction that I'm headed in.
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And I want you to stop saying that."
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About 20 years ago,
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I was asked by my editors at the "New York Times Magazine"
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to write a piece about Deaf culture.
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And I was rather taken aback.
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I had thought of deafness entirely as an illness:
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those poor people, they couldn't hear,
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they lacked hearing, and what could we do for them?
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And then I went out into the Deaf world.
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I went to Deaf clubs.
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I saw performances of Deaf theater and of Deaf poetry.
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I even went to the Miss Deaf America contest in Nashville, Tennessee,
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where people complained about that slurry Southern signing.
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(Laughter)
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And as I plunged deeper and deeper into the Deaf world,
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I became convinced that Deafness was a culture
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and that the people in the Deaf world who said,
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"We don't lack hearing; we have membership in a culture,"
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were saying something that was viable.
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It wasn't my culture,
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and I didn't particularly want to rush off and join it,
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but I appreciated that it was a culture
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and that for the people who were members of it,
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it felt as valuable as Latino culture or gay culture or Jewish culture.
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It felt as valid, perhaps, even as American culture.
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Then a friend of a friend of mine had a daughter who was a dwarf.
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And when her daughter was born,
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she suddenly found herself confronting questions
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that now began to seem quite resonant to me.
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She was facing the question of what to do with this child.
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Should she say, "You're just like everyone else but a little bit shorter?"
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Or should she try to construct some kind of dwarf identity,
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get involved in the Little People of America,
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become aware of what was happening for dwarfs?
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And I suddenly thought,
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"Most deaf children are born to hearing parents.
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Those hearing parents tend to try to cure them.
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Those deaf people discover community somehow in adolescence.
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Most gay people are born to straight parents.
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Those straight parents often want them to function
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in what they think of as the mainstream world,
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and those gay people have to discover identity later on.
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And here was this friend of mine,
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looking at these questions of identity with her dwarf daughter.
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And I thought, "There it is again:
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a family that perceives itself to be normal
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with a child who seems to be extraordinary."
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And I hatched the idea that there are really two kinds of identity.
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There are vertical identities,
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which are passed down generationally from parent to child.
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Those are things like ethnicity,
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frequently nationality, language, often religion.
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Those are things you have in common with your parents and with your children.
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And while some of them can be difficult,
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there's no attempt to cure them.
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You can argue that it's harder in the United States --
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our current presidency notwithstanding --
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to be a person of color.
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And yet, we have nobody who is trying to ensure
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that the next generation of children born to African-Americans and Asians
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come out with creamy skin and yellow hair.
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There are these other identities which you have to learn from a peer group,
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and I call them "horizontal identities,"
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because the peer group is the horizontal experience.
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These are identities that are alien to your parents
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and that you have to discover when you get to see them in peers.
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And those identities, those horizontal identities,
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people have almost always tried to cure.
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And I wanted to look at what the process is
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through which people who have those identities
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come to a good relationship with them.
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And it seemed to me that there were three levels of acceptance
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that needed to take place.
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There's self-acceptance, there's family acceptance, and there's social acceptance.
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And they don't always coincide.
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And a lot of the time, people who have these conditions are very angry,
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because they feel as though their parents don't love them,
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when what actually has happened is that their parents don't accept them.
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Love is something that, ideally, is there unconditionally
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throughout the relationship between a parent and a child.
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But acceptance is something that takes time.
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It always takes time.
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One of the dwarfs I got to know was a guy named Clinton Brown.
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When he was born, he was diagnosed with diastrophic dwarfism,
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a very disabling condition,
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and his parents were told that he would never walk,
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he would never talk,
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he would have no intellectual capacity,
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and he would probably not even recognize them.
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And it was suggested to them that they leave him at the hospital
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so that he could die there quietly.
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His mother said she wasn't going to do it,
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and she took her son home.
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And even though she didn't have a lot of educational or financial advantages,
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she found the best doctor in the country for dealing with diastrophic dwarfism,
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and she got Clinton enrolled with him.
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And in the course of his childhood,
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he had 30 major surgical procedures.
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And he spent all this time stuck in the hospital
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while he was having those procedures,
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as a result of which, he now can walk.
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While he was there, they sent tutors around to help him with his schoolwork,
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and he worked very hard, because there was nothing else to do.
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He ended up achieving at a level
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that had never before been contemplated by any member of his family.
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He was the first one in his family, in fact, to go to college,
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where he lived on campus and drove a specially fitted car
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that accommodated his unusual body.
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And his mother told me the story of coming home one day --
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and he went to college nearby --
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and she said, "I saw that car, which you can always recognize,
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in the parking lot of a bar," she said.
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(Laughter)
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"And I thought to myself,
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'They're six feet tall, he's three feet tall.
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Two beers for them is four beers for him.'"
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She said, "I knew I couldn't go in there and interrupt him,
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but I went home, and I left him eight messages on his cell phone."
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She said, "And then I thought,
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if someone had said to me, when he was born,
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that my future worry would be that he'd go drinking and driving
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with his college buddies ..."
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(Laughter)
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(Applause)
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And I said to her,
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"What do you think you did that helped him to emerge
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as this charming, accomplished, wonderful person?"
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And she said, "What did I do?
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I loved him, that's all.
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Clinton just always had that light in him.
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And his father and I were lucky enough to be the first to see it there."
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I'm going to quote from another magazine of the '60s.
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This one is from 1968 --
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"The Atlantic Monthly," voice of liberal America --
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written by an important bioethicist.
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He said, "There is no reason to feel guilty
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about putting a Down's syndrome child away,
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whether it is 'put away' in the sense of hidden in a sanitarium
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or in a more responsible, lethal sense.
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It is sad, yes. Dreadful.
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But it carries no guilt.
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True guilt arises only from an offense against a person,
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and a Down's is not a person."
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There's been a lot of ink given to the enormous progress that we've made
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in the treatment of gay people.
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The fact that our attitude has changed is in the headlines every day.
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But we forget how we used to see people who had other differences,
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how we used to see people who were disabled,
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how inhuman we held people to be.
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And the change that's been accomplished there,
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which is almost equally radical,
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is one that we pay not very much attention to.
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One of the families I interviewed, Tom and Karen Robards,
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were taken aback when, as young and successful New Yorkers,
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their first child was diagnosed with Down syndrome.
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They thought the educational opportunities for him were not what they should be,
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and so they decided they would build a little center --
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two classrooms that they started with a few other parents --
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to educate kids with DS.
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And over the years, that center grew into something called the Cooke Center,
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where there are now thousands upon thousands of children
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with intellectual disabilities
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who are being taught.
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In the time since that "Atlantic Monthly" story ran,
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the life expectancy for people with Down syndrome has tripled.
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The experience of Down syndrome people includes those who are actors,
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those who are writers, some who are able to live fully independently in adulthood.
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The Robards had a lot to do with that.
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And I said, "Do you regret it?
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Do you wish your child didn't have Down syndrome?
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Do you wish you'd never heard of it?"
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And interestingly, his father said,
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"Well, for David, our son, I regret it,
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because for David, it's a difficult way to be in the world,
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and I'd like to give David an easier life.
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But I think if we lost everyone with Down syndrome,
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it would be a catastrophic loss."
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And Karen Robards said to me, "I'm with Tom.
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For David, I would cure it in an instant, to give him an easier life.
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But speaking for myself --
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well, I would never have believed 23 years ago when he was born
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that I could come to such a point.
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Speaking for myself, it's made me so much better and so much kinder
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and so much more purposeful in my whole life that, speaking for myself,
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I wouldn't give it up for anything in the world."
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We live at a point when social acceptance for these and many other conditions
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is on the up and up.
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And yet we also live at the moment
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when our ability to eliminate those conditions
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has reached a height we never imagined before.
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Most deaf infants born in the United States now
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will receive cochlear implants,
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which are put into the brain and connected to a receiver,
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and which allow them to acquire a facsimile of hearing
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and to use oral speech.
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A compound that has been tested in mice, BMN-111,
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is useful in preventing the action of the achondroplasia gene.
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Achondroplasia is the most common form of dwarfism,
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and mice who have been given that substance
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and who have the achondroplasia gene
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grow to full size.
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Testing in humans is around the corner.
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There are blood tests which are making progress
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that would pick up Down syndrome more clearly and earlier in pregnancies
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than ever before,
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making it easier and easier for people to eliminate those pregnancies,
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or to terminate them.
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So we have both social progress and medical progress.
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And I believe in both of them.
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I believe the social progress is fantastic and meaningful and wonderful,
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and I think the same thing about the medical progress.
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But I think it's a tragedy when one of them doesn't see the other.
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And when I see the way they're intersecting
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in conditions like the three I've just described,
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I sometimes think it's like those moments in grand opera
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when the hero realizes he loves the heroine
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at the exact moment that she lies expiring on a divan.
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(Laughter)
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We have to think about how we feel about cures altogether.
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And a lot of the time the question of parenthood is:
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What do we validate in our children,
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and what do we cure in them?
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Jim Sinclair, a prominent autism activist, said,
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"When parents say, 'I wish my child did not have autism,'
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what they're really saying is, 'I wish the child I have did not exist
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and I had a different, nonautistic child instead.'
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Read that again. This is what we hear when you mourn over our existence.
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This is what we hear when you pray for a cure:
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that your fondest wish for us is that someday we will cease to be,
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and strangers you can love will move in behind our faces."
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It's a very extreme point of view,
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but it points to the reality that people engage with the life they have
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and they don't want to be cured or changed or eliminated.
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They want to be whoever it is that they've come to be.
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One of the families I interviewed for this project
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was the family of Dylan Klebold,
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who was one of the perpetrators of the Columbine massacre.
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It took a long time to persuade them to talk to me,
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and once they agreed, they were so full of their story
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that they couldn't stop telling it,
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and the first weekend I spent with them, the first of many,
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I recorded more than 20 hours of conversation.
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14:59
And on Sunday night, we were all exhausted.
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15:01
We were sitting in the kitchen. Sue Klebold was fixing dinner.
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15:05
And I said, "If Dylan were here now,
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15:07
do you have a sense of what you'd want to ask him?"
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15:10
And his father said, "I sure do.
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15:12
I'd want to ask him what the hell he thought he was doing."
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15:16
And Sue looked at the floor, and she thought for a minute.
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15:20
And then she looked back up and said,
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"I would ask him to forgive me for being his mother
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15:26
and never knowing what was going on inside his head."
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15:30
When I had dinner with her a couple of years later --
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one of many dinners that we had together --
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15:35
she said, "You know, when it first happened,
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15:38
I used to wish that I had never married, that I had never had children.
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15:42
If I hadn't gone to Ohio State and crossed paths with Tom,
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15:46
this child wouldn't have existed,
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15:47
and this terrible thing wouldn't have happened.
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15:50
But I've come to feel that I love the children I had so much
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15:54
that I don't want to imagine a life without them.
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15:57
I recognize the pain they caused to others,
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16:00
for which there can be no forgiveness,
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16:02
but the pain they caused to me, there is," she said.
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16:06
"So while I recognize that it would have been better for the world
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16:09
if Dylan had never been born,
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16:12
I've decided that it would not have been better for me."
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16:18
I thought it was surprising
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how all of these families had all of these children
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16:22
with all of these problems,
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16:24
problems that they mostly would have done anything to avoid,
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16:27
and that they had all found so much meaning in that experience of parenting.
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16:31
And then I thought, all of us who have children
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16:34
love the children we have, with their flaws.
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16:37
If some glorious angel suddenly descended through my living-room ceiling
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16:41
and offered to take away the children I have
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16:43
and give me other, better children --
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16:45
more polite, funnier, nicer, smarter --
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16:49
(Laughter)
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I would cling to the children I have and pray away that atrocious spectacle.
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16:55
And ultimately,
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16:56
I feel that in the same way that we test flame-retardant pajamas in an inferno
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17:00
to ensure they won't catch fire when our child reaches across the stove,
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17:05
so these stories of families negotiating these extreme differences
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4013
17:09
reflect on the universal experience of parenting,
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2663
17:11
which is always that sometimes, you look at your child, and you think,
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17:16
"Where did you come from?"
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1936
17:18
(Laughter)
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17:20
It turns out that while each of these individual differences is siloed --
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4713
17:25
there are only so many families dealing with schizophrenia,
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2785
17:28
only so many families of children who are transgender,
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17:31
only so many families of prodigies --
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17:32
who also face similar challenges in many ways --
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17:35
there are only so many families in each of those categories.
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17:38
But if you start to think
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17:39
that the experience of negotiating difference within your family
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17:43
is what people are addressing,
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17:45
then you discover that it's a nearly universal phenomenon.
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17:48
Ironically, it turns out,
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17:50
that it's our differences and our negotiation of difference
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17:53
that unite us.
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17:55
I decided to have children while I was working on this project.
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18:01
And many people were astonished and said,
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3198
18:04
"But how can you decide to have children
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1999
18:06
in the midst of studying everything that can go wrong?"
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2981
18:10
And I said, "I'm not studying everything that can go wrong.
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18:13
What I'm studying is how much love there can be,
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18:16
even when everything appears to be going wrong."
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18:21
I thought a lot about the mother of one disabled child I had seen,
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5541
18:27
a severely disabled child who died through caregiver neglect.
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18:30
And when his ashes were interred, his mother said,
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18:34
"I pray here for forgiveness for having been twice robbed:
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18:41
once of the child I wanted,
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18:44
and once of the son I loved."
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18:47
And I figured it was possible, then, for anyone to love any child,
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4530
18:52
if they had the effective will to do so.
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18:55
So, my husband is the biological father of two children
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4963
18:59
with some lesbian friends in Minneapolis.
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19:03
I had a close friend from college who'd gone through a divorce
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3509
19:06
and wanted to have children.
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19:08
And so she and I have a daughter,
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19:10
and mother and daughter live in Texas.
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19:12
And my husband and I have a son who lives with us all the time,
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3348
19:15
of whom I am the biological father,
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2360
19:18
and our surrogate for the pregnancy was Laura,
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3724
19:21
the lesbian mother of Oliver and Lucy in Minneapolis.
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2777
19:24
(Laughter)
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1427
19:26
So --
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19:27
(Applause)
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19:34
The shorthand is: five parents of four children in three states.
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19:38
(Laughter)
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19:39
And there are people who think that the existence of my family
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19:42
somehow undermines or weakens or damages their family.
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4489
19:47
And there are people who think that families like mine
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19:50
shouldn't be allowed to exist.
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19:52
And I don't accept subtractive models of love,
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19:56
only additive ones.
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19:58
And I believe that in the same way that we need species diversity
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3503
20:01
to ensure that the planet can go on,
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20:04
so we need this diversity of affection and diversity of family
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4277
20:08
in order to strengthen the ecosphere of kindness.
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3279
20:13
The day after our son was born,
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2398
20:15
the pediatrician came into the hospital room
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20:17
and said she was concerned.
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20:19
He wasn't extending his legs appropriately.
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20:23
She said that might mean that he had brain damage.
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2537
20:25
Insofar as he was extending them, he was doing so asymmetrically,
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3731
20:29
which she thought could mean that there was a tumor of some kind in action.
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3714
20:33
And he had a very large head,
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1664
20:34
which she thought might indicate hydrocephalus.
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2935
20:37
And as she told me all of these things,
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1888
20:39
I felt the very center of my being pouring out onto the floor.
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3821
20:43
And I thought, "Here I had been working for years
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2448
20:45
on a book about how much meaning people had found
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2525
20:48
in the experience of parenting children who were disabled,
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3633
20:52
and I didn't want to join their number
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3478
20:55
because what I was encountering was an idea of illness."
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2774
20:58
And like all parents since the dawn of time,
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2742
21:01
I wanted to protect my child from illness.
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2977
21:04
And I wanted, also, to protect myself from illness.
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3243
21:07
And yet, I knew from the work I had done
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2747
21:10
that if he had any of the things we were about to start testing for,
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3816
21:14
that those would ultimately be his identity,
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2963
21:17
and if they were his identity, they would become my identity,
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4039
21:21
that that illness was going to take a very different shape as it unfolded.
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21:25
We took him to the MRI machine, we took him to the CAT scanner,
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3129
21:28
we took this day-old child and gave him over for an arterial blood draw.
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3784
21:32
We felt helpless.
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1261
21:33
And at the end of five hours,
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1657
21:35
they said that his brain was completely clear
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21:37
and that he was by then extending his legs correctly.
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2778
21:40
And when I asked the pediatrician what had been going on,
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21:43
she said she thought in the morning, he had probably had a cramp.
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21:47
(Laughter)
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21:51
But I thought --
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21:52
(Laughter)
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3925
21:56
I thought how my mother was right.
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21:58
I thought, "The love you have for your children
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22:02
is unlike any other feeling in the world.
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3362
22:05
And until you have children, you don't know what it feels like.
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4673
22:12
I think children had ensnared me
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2136
22:14
the moment I connected fatherhood with loss.
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22:18
But I'm not sure I would have noticed that
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22:20
if I hadn't been so in the thick of this research project of mine.
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22:25
I'd encountered so much strange love,
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3116
22:28
and I fell very naturally into its bewitching patterns.
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22:32
And I saw how splendor can illuminate even the most abject vulnerabilities.
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22:39
During these 10 years, I had witnessed and learned
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22:43
the terrifying joy of unbearable responsibility,
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22:46
and I had come to see how it conquers everything else.
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22:50
And while I had sometimes thought the parents I was interviewing were fools,
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22:54
enslaving themselves to a lifetime's journey with their thankless children
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22:59
and trying to breed identity out of misery,
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23:02
I realized that day that my research had built me a plank
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23:07
and that I was ready to join them on their ship.
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23:10
Thank you.
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23:11
(Applause and cheers)
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23:20
Thank you.
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1150
About this website

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