Andrew Solomon, Ph.D., is a writer and lecturer on politics, culture and psychology; winner of the National Book Award; and an activist in LGBTQ rights, mental health, and the arts. He is Professor of Clinical Medical Psychology (in Psychiatry) at Columbia University Medical Center, and a former President of PEN American Center.
Andrew Solomon’s Far From the Tree won the National Book Award and is this month’s pick for the Everything Happens Book Club. Click here to learn more about the book club and how you can join us online or gather friends in person to discuss this important book.
Andrew became interested in the Autism Rights Movement. Learn about that movement, here.
To learn more about the Little People of America and their annual conference, click here.
Kate Bowler: Hi there. My name is Kate Bowler, and this is Everything Happens. My dad is a historian and I’m a historian. Whenever I admit that, people always say, “The apple doesn’t fall far from the tree.” And my dad and I both chuckle because when do historians ever go outside? What are these trees you speak of? But, we have the stories about who we are that we pass on as parents and the stories we live into as children. And I had a story that made complete sense. We are a family that keeps full bookshelves in the bathroom. It’s super gross, but it shows how smart we are. We’re the Bowlers.
And then, I got sick with cancer, and no one in my family had had cancer, at least not when they were young. And the story didn’t make sense anymore. And my mind scrambled to figure out where the story was. Should I meet other people with cancer and find a new community? Will my family ever understand what I’m going through? Who will help me make sense of who I am becoming?
The story of how we find our identities is such a powerful one and nowhere more obvious than when we talk about our families. I want to introduce you to an amazing author who has written beautifully and wisely about what it’s like to be different from your family. Andrew Solomon is a writer, lecturer, and activist. His beautiful book, Far From the Tree, won the national book award and is this month’s pick for the Everything Happens Book Club. I hope you’ll join us. You can find out how to read along at katebowler.com.
So, hello, Andrew. Thanks for being with me today.
Andrew Solomon: Hello, Kate. What an honor and a thrill to be here.
K.B.: Well, we have almost met three times now at different events, and I’ve always just wanted the chance to say thank you so much for this book.
A.S.: Well, thank you. What a kind thing to say. I’m sorry we haven’t met on those three occasions.
K.B.: When I got cancer, I had this really overwhelming feeling like I was a problem to be solved, and you began this book with a very personal account of what it feels like to feel like a problem. Would you mind telling me about that?
A.S.: Well, I wrote in the book about my experience as a gay person going from a young adulthood, in which I tried to suppress who I was and to pretend to be someone else, to a more mature adulthood in which I’ve arrived to a lot of self-acceptance. In telling that story, I talked a lot about the prejudice that I felt existed within my family, and injustice that existed in the larger society at the time that I was growing up. I think there are very few other occasions when anyone kind of experienced the passage from complete repression to celebration of identity, from the sort of idea that homosexuality was a crime and a sin and an illness, to the idea that it was something to be acknowledged and represented in an increasingly diverse world and the corridors of power. It’s been an extraordinary thing to live through.
K.B.: Wow. You have this really thick vocabulary for identity, and I wondered if we could go over a little bit of the language you use that I found really helpful. Tell us what you mean by vertical identity and how that’s different from what you call horizontal identity.
A.S.: Vertical identities are passed down generationally from parent to child. There are many of those identities. Your ethnicity is usually a vertical identity, your nationality, most of the time your language, frequently your religion. But there are then these other identities, identities that are not passed down generationally from parent to child, that people have to learn from a peer group. Because they have to learn them from a peer group, I’ve called the horizontal identities. They’re ones that you have to go out and learn yourself outside of your family, and your family has no idea what to do with them. Those are identities that people have tried to cure. So, identities like deafness, or dwarfism, or autism, or schizophrenia, or being transgender or being gay, they’re all things that occur in families that hadn’t previously had anything to do with them. And those families mostly perceive themselves to be relatively normal, and they perceive their child to be abnormal, and they’re very focused on finding a cure for what’s wrong with their child.
I feel like all of parenting involves making a determination about what aspects of your child you’re going to change and what aspects of your child you’re going to accept and celebrate. Some things clearly need to be changed. You have to give your child an education. You have to teach them some manners. You have to give them a moral compass. And other things need to be accepted and celebrated, and a lot of things fall in a foggy middle. The horizontal identities are frequently things that, in fact, need to be accepted and celebrated but the parents time out of mind have tried to cure and change.
K.B.: You know, until I heard that phrase from you, I didn’t fully understand the category of chosen family in a fuller way until I read your account of horizontal identities that sometimes parents find themselves with kids that have to learn who they are by finding their people, but it’s not the people they inherited.
A.S.: Absolutely. And chosen family is very much about finding the other people who are living in a way similar to the way you are living, because you understand yourself in part by seeing yourself reflected in a larger society to which you may be alien, but in part through shared experience with other people who are looking in the mirror from the same vantage point as you are.
K.B.: Yeah. It’s such a powerful experience to have who you are reflected back to you in such a way that it almost reconstitutes you. I have found that community is one of the most powerful things I’ve experienced when I felt like I was losing that sense of that story of who I am.
A.S.: Community with other people who are dealing with cancer in the way you are?
K.B.: I thought about that. I thought about whether I should go find other people with cancer and that would do it. But, I think I realized almost right away that much in the same way as you’re saying families are so unique, that pain is so particular, right? Like, the way we experience it in our bodies, and the way it isolates us, or connects us, and that even just having people who recognized what it was like to have a before and an after in their lives was enough to build a bigger community for me.
A.S.: Well, that’s wonderful that you were able to find that community and that you had the energy and the wherewithal to search for it under such adverse circumstances.
K.B.: Well, I am very nosy, so that might have been it.
A.S.: Me, too. Me, too.
K.B.: You stumbled into this research first by investigating Deaf culture. I wonder what you discovered about what disability means in different contexts through that research.
A.S.: Well, the work on Deaf culture really began with a magazine assignment in 1994. When I was given the assignment, I was kind of surprised because I’d mostly been doing foreign reporting, but my editor said to me, “This is a foreign society in our own midst.” And I had always thought of the deaf as these poor people who couldn’t hear, what could we do for them? What a shame it must be to have to grow up not being able to hear things. And then I went out into the Deaf culture, and I went to Deaf clubs. I went to Deaf theater. I went to the Miss Deaf America Contest in Nashville, Tennessee where everyone complained about the slurry southern signing. As I got deeper and deeper into the world of Deaf culture, I realized it really was a culture. It was a culture organized around the shared use of sign language. I remember going to a meeting at the National Association of the Deaf in which there were hundreds of people with conversations flying off the ends of their hands, and walking into that room and thinking, “I wish I were Deaf,” which is not to say that I wished I couldn’t hear, because my hearing is obviously pretty useful to me and I use it all the time. But, I wished in that moment that I were part of this community of great intimacy and great joy who were all united in that large room on that particular occasion.
And so I came away with the sense that disability is really, in many ways, a construct. I mean, there are conditions that are inherently agonizing and there’s nothing we can do that will make them not inherently agonizing. But there are many other conditions that we tend to think of as being inferior or representing damage that for the people who have them don’t function that way. And so, I became very interested in the Autism Rights movement. I was very interested in the work of the Little People of America against attempts to cure dwarfism. I was very interested in the Deaf community that I’ve just described, and what a joyful community I found it to be. And I was really moved as I went through all of those experiences by the ways in which disability really turned out not to be as necessarily dark as we presume it to be.
K.B.: Well, each chapter in your book, which I’m so thrilled people can read that or watch the absolutely spectacular documentary that I wept my way through, thank you very much.
A.S.: Thank you.
K.B.: It was really beautiful. But, you have such a careful examination of how society assumes disability always equals bad, but that’s not necessarily true. Can you tell me a bit about the difference between disability and identity and how we parse that out?
A.S.: Well, I think frequently, we use the word disability when we want to speak negatively about a condition, and we use the word identity when we want to speak positively about the same condition. I had this interesting experience. I went off to a village in Bali which is a sort of peasant village. It’s a village in which there is a recessive gene that causes deafness that has been passed down for generations. And the village developed its own sign language, which experts believe has been in use since at least the 18th century.
A.S.: Because it’s a recessive gene, deaf people have hearing children and hearing people have deaf children, and there are all kinds of surprises that come up. And so everyone in the village knows how to sign. What I found when I went into that village was that being deaf really wasn’t that much of a disability if you lived in a world where everyone could sign.
K.B.: You know, there’s such loneliness though to being different until people find their people. And then you can unite around those differences.
A.S.: Well, when we made the film of Far From the Tree, one of the people we included was the one who had never met another dwarf. She was a dwarf and she went to her first conference of the Little People of America and we followed her there with cameras and saw the experiences that she had and just the sense of revelation. At the end of being there for, I think it was five days, she had really built a friendship with somebody else she’d met. She said, “For the first time, I have a friend who understands me, a friend who is like me.” The sense of redemption that there is in that discovery of other people who are like you is so enormous. I think it’s so important if you have a child who is different in some way that you not only do everything you can to support and encourage your child, but also that you enter into a larger community where that child will know other people who are like him or her and who won’t be forever feeling that they have to figure out who they are entirely by themselves. We need to do it with others.
K.B.: Yeah, we can’t make ourselves from scratch. We just can’t.
K.B.: I was so struck in the movie, too, how when she went to the convention she went not just to feel understood and to see other people, but also, it said, to disappear. I thought that was such a great indication of how much we just want to feel no longer defined by the most sort of obvious labels we’re given.
A.S.: And that’s exactly what happens at a Little People of America conference. I mean, on the one hand, the people who are there are mostly there because they have dwarfism of one kind or another. But, on the other hand, when they’re with all these other people who have dwarfism, people are looking at them because they’re interesting or they’re beautiful or they’re strange or for any of a thousand different reasons, but everyone isn’t just starting at them because they’re a dwarf, the way that everyone stares at them all the time in their regular lives. And for them to have that one week a year when that’s not the most pertinent aspect of their being, that’s quite a breakthrough.
K.B.: Yeah. You know, when I read your book, I was so struck by the lengths that parents will go to to sacrifice for their kids. I wondered if you could share some of your favorite examples of parents who just went the extra mile or 10.
A.S.: Well, I mean, on the one hand, we know that a large number of children available for adoption are children with disabilities, so obviously lots of people can’t cope with having children with differences and disabilities.
A.S.: But, lots of other people, and the ones I mostly wrote about, end up not only taking care of those children out of a sense of obligation but take care of those children and eventually find enormous meaning in the experience. There was a study that I like to quote that was done some years ago in which a group of mothers were interviewed within days of having given birth to children with a variety of differences and disabilities. They were asked, “Do you expect to find meaning in this experience?”, and then the researchers went back to those families 10 years later, and the children of mothers who had anticipated finding meaning in the experience were doing better on every possible clinical measure than the children of mothers who had not anticipated finding meaning. And so that process of finding meaning is not only something that’s sort of cheerful, but it makes an enormous difference in the future life of the parent and in the future life of the family and in the future life of the individual who is directly affected.
I came across so many stories of enormous sacrifices that people had made. I suppose that the transition is that when you have a child who has an identity that is one of these horizontal identities and different from your own, you then have an identity as the parent of a child with a significant difference, and how do you negotiate that experience. Emily Perl Kingsley, for example, who’s the one person who’s in both the book and the movie, when Emily was given a child with Down syndrome, you know, she was kind of horrified. Then she decided she was going to do everything she could to stimulate his brain and see how well he could develop and she did amazing things. She had described filling a bathtub with Jello so that he could roll around in it and taste it and feel it against his skin. They said sensory stimulation was very important for children with Down syndrome, so she made a quilt in which every square was made of a different kind of fabric. One was made of AstroTurf. They were all of these things so that her son, Jason, would touch all of these different surfaces every time he rolled over in his crib.
She then went on to fight with the school system, and to fight with the medical system, and to fight, and fight, and fight on behalf of her son. Jason is a philosopher and he’s very brilliant. He’s a person with Down syndrome. There are things he can’t do. There are ways that he can’t fully care for himself. But he has led quite an interesting and remarkable life and he can think more deeply than almost anyone with Down syndrome who had gone before because he was given so much early exposure and so much encouragement, and Emily has given her life to it. She said, “If I had known ahead of time that he was going to have Down syndrome, I would have seriously considered termination, and I would have missed what has been not only the most difficult but also the most rewarding experience of my entire life.”
K.B.: It’s such a move-heaven-and-earth kind of love, isn’t it?
K.B.: I had this really miserable pregnancy, the kind where you don’t talk about because you feel like it’s sort of a public service announcement against anyone in the future creating and then bearing children, so I was really quiet about how terrible it was. And then when he came out, and then they put him in my arms, and he loves this story, but then he looked at me and I looked at him, and the first thing out of my mouth was, “Oh, it was you. It was you the whole time.” And that’s been for me the big realization of parenting. That was not a baby in general. That was a baby in particular, and what a joy to figure out all of his little details.
A.S.: That’s beautifully said, and I think that’s absolutely right. I think it is the shocking thing of becoming a parent. It certainly was shocking for me when I looked at these children and I suddenly thought, oh, I’m a father now, and this is my child, and this person is going to be absolutely central to my happiness and to my experience of the world, and to my understanding of who I am and of who he is for the whole rest of my life.
K.B.: Yeah. We belong to each other and we’re going to figure out what that means for the next 50 years.
K.B.: For every parent out there who has a child with severe limitations, I also hear in your book and in your talks this real permission to be tired and also scared. I recently had a friend who had to institutionalize her child, her child who she wanted her whole life, and just, she was so grateful to be a mom, and now her child has such severe issues and is so violent that she can’t be cared for in their home. It is absolutely breaking her heart to feel like the word “mom” isn’t an unlimited word, that she is limited along with everybody else. There’s so many stories in your book that are like that, that people hit the wall.
A.S.: Yes. I think in the first place it should be understood that being overwhelmed and exhausted and pained by the experience of bringing up your child does not mean you don’t love your child. It’s not as though you choose and either you’re this super person who can absolutely withstand any assault on ordinary life and dignity, or you’re an unloving, rejecting, terrible parent. I don’t know your friend or her exact circumstances, but I think it’s possible really to love your child and really to be overwhelmed by what your child wants and requires. It’s possible to feel deep regret about the nature of your parenthood and still be devoted to doing whatever you think is best for your child. It’s possible to be worn out and still to be a mother.
K.B.: Yeah. That sounds exactly right to me. But, it makes me wonder, how has your research changed the way that you parent or even think about families?
A.S.: Well, sometimes I feel like it’s changed it very, very profoundly, and sometimes I find myself parenting and I think to myself, “I did all that research and I’m still responding in this way.” So, it can go in either direction. But, I would say that I recognized an important distinction that I had not understood before I worked on the book, and that was the distinction between love and acceptance. I think love is something that ideally is there from the time a child is born and that most parents love their children. But acceptance is a process and it takes time, and it always takes time. It takes time even when your child isn’t remarkable and extraordinary in the various ways that I was examining. It always is a process getting to acceptance of your child for who he or she really and truly is. I think I’m more accepting. I think I’m more open than I would have been without this research to the idea that they will go on and have lives in which they may define success in the terms that have defined my life, and they may define success in some other very different way, and to be open to the possibility of letting them discover who they are.
Having said all of that, I have a house with plenty of rules in it, and I have expectations. It’s not like it’s a sort of some incredible commune-like free for all. So …
K.B.: Yes, where Latin is for Saturdays. There’s no sugar cereal.
K.B.: Oh man. I’d love a home like that.
A.S.: Come and stay.
K.B.: But you said something, I think maybe it was in the movie, but you said that you found particular ecstasy in ordinary joys because you didn’t expect those joys to be ordinary to you. That, oh, I cried my little face off with that one because it’s an expression of such deep gratitude. It sounds like you finally got to a place of really, I don’t know, just love born of deeper acceptance.
A.S.: I think when I was growing up, I felt as though I had to make this terrible choice. I could either be true to myself and be gay, or I could try to disguise who I really was and have a family. The two things that mattered most to me were to live with integrity and to have a family, and they seemed to be opposed to each other. And then while I was suffering over which one to do, and I had years of going back and forth between. I had girlfriends, and then I had boyfriends, and then I had girlfriends, and then I had boyfriends. It went on all the way through into my 30s. While I was going through all of that, the world changed around me, and it turned out that it wasn’t necessary to deny who I was if I wanted to have children. A whole new and amazing life kind of bubbled up out of that. That was kind of a revelation to me, but it was a revelation, as I said a little earlier in our conversation, that came not only because of my maturation and growth, but because of the maturation and growth of the society around me.
K.B.: You’ve illustrated such beauty in these families who’ve chosen to, you said, tolerate what cannot be cured, and I think be rather valiant in the face of very complicated and painful love. So, how can we encourage this beauty and bravery in one another?
A.S.: Through telling stories which is just what you and I are both doing. It’s difficult to hate anyone whose story you know, and if you really listen to a variety of stories, they give you models for not only love, but also acceptance. How do you get to the point at which you’re able to make the experience of the child you have into a good and positive experience? You know, we can have better policies. We can have better supports for parents of children who are different or disabled. We can have public education campaigns in which people understand that being gay, for example, is not actually a desperate tragedy, but neither is being deaf and neither is being a dwarf. We can have all kinds of approaches, but I think the thing that makes the biggest difference is stories.
K.B.: Yeah, because then people can find love in the details.
A.S.: I mean, you know, there’s the story that, again, I have told sometimes when I’ve given lectures, but of this guy named Clinton Brown, who remains so inspiring to me. He was born with diastrophic dwarfism, which is a very severely disabling condition. Some kinds of dwarfism are just about height, but diastrophic dwarfism is really a tremendous challenge. And the doctors at the hospital told his parents he wouldn’t live for any length of time, and that they should probably just leave him at the hospital so that he could die there quietly, and that it might be easiest if they didn’t see him. They didn’t see him for three days while they thought about it, and then his mother said, “Well, that’s my baby and I want to take my baby home, and if he dies very soon, at least I’ll know I did my best.” She took him home and for a year she took him to see various doctors who said, “Diastrophic dwarfism, are you prepared for this? Do you know about that? You understand he’s never going to walk? You understand he’s never going to talk? You understand he’s never going to know who you are? Are you ready for this medical complication? Do you know what you have to do if this happens?” And so on and so forth.
And then finally she found her way, despite not having vast resources, to the best doctor for the treatment of skeletal dysplasias in the United States with someone named Steven Kopits of Johns Hopkins. She described taking him into Dr. Kopits, and Dr. Kopits lifted him up in the air and said, “Let me tell you, that’s going to be a handsome young man one day.” She described how her whole life was turned around in that moment. Clint, then, under the aegis of Dr. Kopits, had 30 major surgical procedures in the course of his childhood, as a result of which he actually can walk and has mobility and so on. But some of them were spinal surgeries and he was often immobilized for up to three months at a time. While he was stuck in a variety of hospitals, he decided there was nothing else much to do and so he focused on his schoolwork, and he did really well at it. Better than anyone in his family had ever done. He became the first person in his family ever to go to college.
He went to college, and he joined a fraternity, and he had a specially-fitted car that was adjusted for his extraordinary frame. He’s less than three feet tall. The college wasn’t very far away from where his parents lived, the one that he went to, and his mother called me one day and said, “I was driving home from shopping and I went past a bar, and there was Clinton’s car parked outside a bar, and I thought to myself, ‘He’s three feet tall, they’re six feet tall. Two beers for them is four beers for him.'” She said, “And I wanted to go in there and interrupt, but I knew I couldn’t do that, so I just drove home and left him 11 messages on his voicemail.” She said, “And then I thought, if someone had said to me when he was born that my future worry would be that he would go drinking and driving with his college buddies, I’d have been so thrilled to have that problem.”
And I said, “What did you do?” I said, “What did you do that allowed someone for whom there was such a dire prognosis to emerge as someone who’s happy and popular and funny and surrounded by friends, and who’s succeeded in almost every possible way?” And she said, “What did we do? We loved him, that’s all. Clinton just always had that light in him, and we were fortunate enough to be the first to see it there.” I went to Clinton’s wedding a year ago and it was one of the most joyful weddings I have ever attended. His mother came over and put her arm around my shoulder and she said, “You know the whole story.” She said, “Not everyone here knows the whole story. You really know it.” I said, “I really do know it, and look where we are now.”
So, I am always leery of what gets called “inspiration porn,” where you hear these stories and they’re so moving…
K.B.: Yes, absolutely. Me, too.
A.S.: But, the reality is that people manage to love one another and to find a way through under the most adverse circumstances. I wanted to chronicle that and tell those stories in hopes that other people reading them would find hope in them and would find a way to do the same thing.
K.B.: Well, I think you’ve written a very beautiful and a very honest portrayal of parenting as the language of possibility, and I’m really grateful we had a chance to talk today.
A.S.: Thank you. I’m so grateful, too.
K.B.: Sometimes I like to ask my son how he got there. Not like, “How are babies made?,” but more like, “How did you move into my house?” And he laughs and laughs and laughs because the randomness is funny. “How did you become mine and I become yours?” Andrew’s book and the absolutely spectacular documentary of the same name offers such a powerful look at how we belong to each other even if we might be completely different. And the same insight from parents came up again and again. “You love your kids. It isn’t really up to you. They just show up and change you. Some day they just move into your house and you love them.”
Love is unlimited, but we are not. So, let me just say this directly. If you are tired, if you have reached your limit, if you struggle to find resources to support the people in your life, I just want to say, bless you. You are allowed to be tired. If you are still looking for your community, bless you. May this next season be one in which we find our people, the ones who help us find the limits of our abilities and remind us of who we might yet be.
This episode was possible because of the generosity of the John Templeton Foundation, the Issachar Fund, the Lilly Endowment, North Carolina Public Radio WUNC, Faith and Leadership: An Online Learning Resource, and Duke Divinity School. And thank you to my team, Beverly Abel, Jessica Richie, and Be The Change Revolutions.
I would love to have you join us for the Everything Happens Book Club. We’re diving into Andrew Solomon’s book and the accompanying documentary, and there’s lots of ways to participate. Find me online @KatecBowler or at katebowler.com for more information. I’d love to hear what you think of this conversation. Leave a review on Apple Podcasts. This is Everything Happens with me, Kate Bowler.