GUY RAZ, HOST:
It's the TED Radio Hour from NPR. I'm Guy Raz. And our show today is all about identities - the ones we inherit, the ones we choose and how we become who we are. Tell me some of your identities.
ANDREW SOLOMON: I think I like being a father the best of all.
RAZ: Yeah, yeah.
SOLOMON: But being a husband comes pretty close. And then, you know, I have some real sense of investment in being American, being almost 50, being gay. They're all identities.
RAZ: This is the writer Andrew Solomon and he spent a considerable amount of his life trying to understand identity - what it means for other people and what it means for himself. He described it in the opening of his TED Talk.
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SOLOMON: 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. 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.
SOLOMON: 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, is evidence of both my mother's influence and its limits.
SOLOMON: 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 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.
RAZ: Later in life, Andrew actually became a father himself. And he started to wonder more and more about the question - what happens when some people see your identity as an illness? And so he decided to write a book about it and he talked to over 300 parents, all with kids who were different, kids who were autistic, or deaf, or disabled in some way.
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SOLOMON: 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 communities, 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 discovery identity later on. 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. 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.
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. 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 Cook Center where there are now thousands upon thousands of children with intellectual disabilities who are being taught. 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 Robard 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 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.
RAZ: What did you find when you were talking with these parents? How did they sort of help their children come to terms with their identity and not reject it, but embrace it?
SOLOMON: A lot of the parents I interviewed had started off thinking, my child has this weird, alien condition and I'm horrified. And then they felt that they saw their child growing up and they knew they had to help that child construct a positive image of himself. And with that awareness, they were able to get involved in the constructing of that positive image and to say to their child, I value you for who you are and you should value yourself for who you are too, because who you are is really pretty terrific.
RAZ: The parents that you talk about, they're not just parents of children with their own identities, but they've developed identities as parents of children with these illnesses.
SOLOMON: That's absolutely right. And those two identity groups need to be in communication and they need to inform each other, but they really are two separate groups. And, for the parents, a lot of the time, what they desperately want and need is a sense of community with others who share the same condition they have. And for many of the conditions, the web has opened up networks of parents that have been incredibly helpful. For some of them, it really hasn't yet and I hope that it will.
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SOLOMON: 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. 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. In so far as he was extending them, he was doing so asymmetrically, which she thought could mean there was some tumor of some kind in action.
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 are about to start testing for, that those would ultimately be his identity and if they were his identity, they would become my identity. 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. But I thought - 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. 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.
RAZ: Most of us don't think about conditions - about deafness or Down syndrome - as being an identity, and they are. I mean, these are thriving cultures.
SOLOMON: They are thriving cultures, and it was quite exhilarating discovering those cultures. And what I felt in the end was as long as you experience your condition as an illness, it's a prison. And once you experience it as an identity, it's the source of your freedom. And, I think that in so far as we can treat illnesses as identities, we liberate people into experiences of great joy that would otherwise be closed to them. And I think, therefore, that there's a real moral imperative to give people the right to claim whatever quality they have as an identity. I think it's the only kind way to build a society.
RAZ: Andrew Solomon. His book is called "Far from the Tree," and his entire TED Talk can be found at TED.NPR.org.
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