Translator: Timothy Covell
Reviewer: Morton Bast "Even in purely nonreligious 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." 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. (Laughter) 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 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. (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 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. There 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. 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. 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. 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. 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, "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 ..." (Laughter) (Applause) And 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." I'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 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 -- well, I would never have believed
23 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. 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. (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,
nonautistic 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 20 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 love
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 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 -- (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, only so many families
of children who are transgender, 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 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." I 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. 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. (Laughter) So -- (Applause) The shorthand is: five parents
of four children in three states. (Laughter) 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 were 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'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. During 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. Thank you. (Applause and cheers) Thank you.
