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  • "Even in purely nonreligious terms,

  • homosexuality represents a misuse of the sexual faculty.

  • It is a pathetic little secondary 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."

  • That'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.

  • (Applause)

  • And my question is, How did we get from there to here?

  • How did an illness become an identity?

  • When 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.

  • (Laughter/Applause)

  • When 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,

  • "But 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."

  • About twenty 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 can 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.

  • (Laughter)

  • And as I plunged deeper and deeper into the Deaf world,

  • I became 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.

  • Then 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?

  • And 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.

  • There 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 could argue that it's harder in the United States

  • our current presidency notwithstandingto 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.

  • There are these other identities which you have to learn from a peer group,

  • and I called 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.

  • And 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.

  • And 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.

  • One 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.

  • And 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 thirty 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.

  • And while he was there, they sent tutors around to help him with his schoolwork,

  • 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.

  • And his mother told me the story of coming home one day,

  • and he went to college nearby.

  • And she said, "And I saw that car

  • which you can always recognizein 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..."

  • (Laughter/Applause)

  • And I said to her, "What do you think he 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."

  • I'm going to quote from another magazine of the Sixties.

  • 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 guilty about putting a Down's 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."

  • There'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.

  • One 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 DS.

  • 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.

  • In 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.

  • The 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."

  • And 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,

  • while I would never have believed twenty-three years ago, when he was born,

  • that 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."

  • We 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 progress

  • that 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.

  • And so we have both social progress and medical progress,

  • and I believe in both of them.

  • I believe that 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 others.

  • 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 the divan.

  • (Laughter)

  • We 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?"

  • Jim 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.

  • One 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 twenty hours of conversation.

  • And 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."

  • When 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 loved the children I had so much

  • that 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."

  • I 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'd 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

  • (Laughter)

  • 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?"

  • (Laughter)

  • It 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.

  • I decided to have children while I was working on this project,

  • and many people were astonished and said,

  • "But how could 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."

  • I thought a lot about the mother of one disabled child I had seen,

  • 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 affective will to do so.

  • So 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.

  • So... (Laughter/Applause)

  • ...the shorthand is five parents of four children in three states.

  • And 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.

  • The 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.

  • Insofar 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.

  • And 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.

  • We 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.

  • (Laughter)

  • But I thought... (Laughter)

  • ...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."

  • I 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 had 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.

  • During these ten 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.

  • Thank you.

  • (Applause)

"Even in purely nonreligious terms,

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