Parallel Lives: Having A Twin With Mental Illness Composer Allen Shawn's twin sister, Mary, was diagnosed with autism and sent to an institution when they were 8 years old. He writes about his relationship with Mary — and his feelings of survivor's guilt — in a new memoir, Twin.
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Parallel Lives: Having A Twin With Mental Illness

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Parallel Lives: Having A Twin With Mental Illness

Parallel Lives: Having A Twin With Mental Illness

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This is FRESH AIR. I'm Terry Gross.

My guest, Allen Shawn, has a fraternal twin sister, Mary, who is autistic. He's often wondered what her experience of the world is, what she sees, hears and feels. Allen and Mary Shawn were very close until the age of eight, when she was institutionalized. His new memoir, "Twin," is about how Mary's presence and absence affected his life.

Shawn also writes about a secret that his parents kept from him. His father, William Shawn, who was the long-time editor of the New Yorker, had another woman in his life, the New Yorker writer Lillian Ross. That relationship lasted from 1954 until William Shawn's death in 1992.

Allen Shawn wonders how his mother lived under the strain of having a disabled child and a partially absent husband. Allen Shawn is a composer and teaches at Bennington College. His previous memoir was about living with his many phobias, which include agoraphobia, fear of heights, fear of vast, open spaces and fear of closed spaces.

Allen Shawn, welcome back to FRESH AIR. I'd like you to do a short reading from the book, just to set it up for us.

Mr. ALLEN SHAWN (Author, "Twin: A Memoir"): (reading) Mary disappeared from my daily life when we were eight years old, when my parents placed her in an institution for the mentally disabled. And as a reader of my previous book will know, it took me painfully long even to recognize that the event had left a kind of ocean of disquiet in me that manifested itself in panic attacks and a lifelong struggle with agoraphobia and in my difficulties negotiating some aspects of public life, as well as in my reactions to trivial losses.

Indeed, that it was so hard for me to openly disclose my own problems was partially due to my fear of the mental illness that Mary had exhibited and which had led, or so it had seemed to me as a child, to her being ostracized from the family.

I suppose that as her twin, it was doubly hard for me to know how and where to draw the boundary line between her nature and mine, between the inherent strangeness of being a person and the kind of strangeness that led to what I saw as banishment from normal human society.

Yet, I wasn't aware of any of this when I was growing up. It wasn't until I reached late middle-age that I could even begin to acknowledge that being Mary's twin was a central fact, perhaps the central fact, of my life.

GROSS: That's Allen Shawn, reading from his new memoir "Twin." It must have been so confusing to be a twin and do everything together - sleep together, eat together - and then suddenly your twin is moved to another room, and then your twin is moved to an institution for the mentally disabled.

Did you sense, before she was taken away, that something was wrong, that you were different or she was different?

Mr. SHAWN: Yes, I think - from my earliest memories, I think I was aware of Mary as being on her own track and in a way, needing to be explained not only to my friends but even to my parents at times. I was sometimes like a kind of a go-between between Mary and my parents, as I remember it anyway.

But this was such a fact of life that, you know, I wasn't terribly conscious of the idea that there might be another way to be a twin or that there were families with no such issues in them.

GROSS: There were things that she did that were considered very unusual. She had an obsession with her right arm. She would kiss it and smile at it, and when she was upset, she would scream unusually long and loud. She sometimes smeared the wall with feces. Did that just seem normal to you because you grew up with it?

Mr. SHAWN: It did. It seemed completely normal. And to be honest, I may have written this book, but I still find it very difficult to talk about as something strange, and I feel a great deal of shyness about the subject.

There's a funny experience that you have when you're writing that is unique. You can say things that, on print, even knowing that others are going to read them, that are very hard to talk about in person. And...

GROSS: It sounds like this is, in part, an impulse to protect your sister.

Mr. SHAWN: Definitely. Well, writing the book was very difficult from that point of view. I constantly was asking myself, well, what would she feel about my saying this? And yet, that question is - it's not only unanswerable, it's really unaskable.

I did talk to her briefly about the fact that I was writing this book, but I'll never really know if she understood what I was asking.

GROSS: Yeah. When your parents realized that Mary had a disorder, they moved her to a different room. Then they moved her to an institution. And you say your parents started to try to protect you from her and encourage you to think of yourself as simply an individual, as opposed to a twin.

Mr. SHAWN: Right.

GROSS: How did being an individual feel different from being a twin?

Mr. SHAWN: I don't think I've ever felt like an individual the way a non-twin does. And I haven't taken a survey of twins, of course, but I literally feel like a bookend, you know, as if there were a set of books next to me, and at the other end of those books, there was another bookend.

I have a sense of being a part of a pair of things. And even in relation to Wally, my brother, I feel in some sense that he's an individual but that I am part of something.

GROSS: What did your parents tell you when they sent Mary away?

Mr. SHAWN: Well, it happened in stages. The first stage was that she went to a summer camp for children with mental disabilities. And so, we were told that she was going to this camp, and certainly the impression was that she was doing very well there and very happy and far happier than she'd been in New York City.

And the next stage was that my parents said that Mary would be staying there.

GROSS: What is your twin sister's official diagnosis?

Mr. SHAWN: Well, today she's diagnosed as autistic and still says she suffers from schizoaffective disorder on her diagnosis, although I'm not convinced myself that that's accurate. And she's mentally retarded, as well.

It's possible to be autistic, as you know, and be very high-functioning. And she - she's in some ways like a third-grader or a second-grader in terms of her reading skills, for example. She's very good at certain mathematical operations. Other things mean nothing to her. But certain things, she's far better than I am, that's for sure.

GROSS: When your sister was first diagnosed, it was a time when parents were often blamed for their child's autism, that it was something the parents did wrong. Did this happen to your parents?

Mr. SHAWN: Well, obviously we weren't sitting around discussing this. As you know from the book, we barely touched on the subject. I certainly remember soaking up the idea that maybe Mary could be cured of her problems.

There was a tremendous amount of fantasy about Mary in the family, at least it seems like fantasy now. I used to wonder if she was pretending to not be well. I still feel that there is a kind of intelligence in her that simply is on a different wavelength from mine or yours and that we just don't have the right receiving instruments to decode what she's thinking and to comprehend her kind of intelligence.

But certainly a fantasy was that she could be cured. And that would imply that there was a cause in the world for what was ailing her, which suggests that on some level I wondered if I or my parents had harmed her in some way and made her withdraw into herself.

This thought was certainly not just a fantasy because at that time, most parents of autistic children were told by their pediatricians that it was probably the result of, usually, coldness on the part of the mother. And it's an appalling thing to think that parents in that era were first saddled with the unimaginably difficult task of trying to raise a child who is just not responding to them and secondly, being told that it's something they're doing that has caused this, even though they may have other children who are relatively OK.

GROSS: And you're talking about the 1950s and the early 1960s.

Mr. SHAWN: Yes. We were born in 1948. So we're talking about the '50s, early '60s.

GROSS: If you're just joining us, my guest is the composer and music professor Allen Shawn, who has written a new memoir called "Twin," and it's about being the brother of a twin sister who is autistic and, at the age of eight, was sent away to an institution.

Allen Shawn's father is William Shawn, the late editor of the New Yorker magazine, and his brother is Wallace Shawn, the writer and actor. Let's take a short break here, and then we'll talk some more. This is FRESH AIR.


GROSS: If you're just joining us, my guest is Allen Shawn. He's a composer and music professor at Bennington College, and he's the author of a previous memoir that was about his phobias. His new memoir, "Twin," is about being the brother of a twin sister who, at the age of eight, was sent away to an institution because she's autistic.

Now, you later learned that there was another big problem in your family, which is that your father was having an affair with Lillian Ross, a writer at the New Yorker, and this is when he was editor of that magazine.

And this lasted until your father's death, and he'd have dinner with your mother every night and spend the night at home, but he'd also spend time most days at Lillian Ross' home or at least with her, wherever they were.

And I'm thinking, like, what a strain this must have been on the family to, on the one hand, have an autistic daughter who is sent to a special institution and, on the other hand, to have your father having such a long-term affair. It lasted until the end of his life. It started in 1954 and lasted until the end of his life.

Mr. SHAWN: Right. I didn't, in fact, know about this relationship until I was close to 30 years old. And I certainly didn't know Lillian's name or anything in detail at all about the relationship. And I heard about it only by chance, in fact.

GROSS: By chance, not from your father but from somebody else?

Mr. SHAWN: No. In fact, to call it an affair when it lasted such a long time is - it's a funny word. We don't really have language for these things, do we?

GROSS: No, it's almost like a parallel marriage.

Mr. SHAWN: It is. I mean, there's so much one never knows about a marriage. My own memory of my parents as a married couple would certainly surprise any listeners who, you know, would expect to see a dead, finished marriage that's sort of just progressing in a pro-forma way, and they're imagining that my father's real life was elsewhere.

I mean, obviously he loved both women. Well, perhaps it isn't obvious because, as I say, we don't have language for these things. The extent to which he loved our mother can hardly be overstated. And he expressed it in hundreds and hundreds of little notes that he left her and an incredibly beautiful poem he wrote on their anniversary - in the last 15 years, anyway, of his life.

GROSS: During an early evaluation of your sister at one of the institutions that she was in, the doctor wrote: "Father is a rather short, very anxious man who is editor of the New Yorker magazine. Mother is also a very anxious woman. Both parents seemed reluctant to convey any information about the nature of their anxiety or its cause. I have the sense of some sort of mutual protective alliance underway. I could not discern the basis for this or be sure who was protecting whom."

You know, I read that, and I thought, were they kind of unknowingly in this kind of protective relationship and the doctor picked up on it, and what the doctor was picking up on was this secret relationship that your father had?

Mr. SHAWN: Well, they were born secretive. I mean, they were secretive about so many things, including my father's own phobias, the difficulty he had getting to that institution, for example; the fact that they were both seeing psychiatrists.

Nobody ever knew that, or at least very few people knew it. I certainly didn't know it. My mother used to say quite often, about many different things: Now, don't mention that. Don't mention this.

Our Jewishness was not actually denied but it was very much soft-pedaled. When I started having my problems with phobias, my parents said, well, just don't tell anybody about it.

So there was a lot of secrecy. So I don't think it was only his, what people call double life, by any means, that they were concealing. I think they had a very strong sense of privacy. I have it myself, and I'm sure Wally does, too.

GROSS: Well, you're not helping with the memoir.

(Soundbite of laughter)

Mr. SHAWN: Yes, it's a funny thing, isn't it?

GROSS: Yeah, yeah. So - but I'm thinking about the burden it must have been to carry around so many secrets. I mean, like don't tell people about your sister, don't tell people about your father's phobias, don't let on you're really Jewish, don't tell people about your own phobias. And you probably sensed that there was a secret that your father was keeping, even though you didn't know it was there.

Mr. SHAWN: You know, people have asked me that, and it sounds like it must be true. But it was a very complicated household, and it's very much like a late-19th-century, early-20th-century, you know, Viennese household.

It feels like I'm remembering something that happened at least a century ago or more. It was very, very complicated. There were lots of little hidden rules, and the rules were not explicit very often.

In fact, sometimes the rules themselves were secret. If you pointed out a certain thing - well, for example, you mentioned that my father was short. Well, we were all short, and those of us who are alive are still short. And I remember once saying that we were short, and that elicited an hour-long debate and discussion, and believe me, there was no doubt about it.

(Soundbite of laughter)

GROSS: Do you think your parents did the right thing in sending your twin, who is autistic, to an institution?

Mr. SHAWN: Well, the options available to them at that time were very, very few. I think - obviously, I've asked myself this question, and some people have already written me and asked me, you know, whether I think this was barbaric and so on.

Mary was a very, very unhappy child. There were very few people who could understand how to comfort her, how to soothe her. She would run through the corridors of the house screaming, sometimes screaming and holding her ears, as if her own screams frightened her.

Sometimes she would be peaceful and she would look very contented. Sometimes she would be very absorbed in things. But quite often, she was very, very unhappy.

Mary was an outsider at schools for the so-called normal. There really was no place for her to go to school with her peers. Then they found a place in a beautiful part of Cape Cod, Chatham, Massachusetts, on the water.

There was a routine there that was fun. There were kids there that Mary played with. She had her first real friends. She seemed happier. She looked happier. And as I say, there wasn't that much understanding of the kind of condition that Mary had.

But anyway, yeah, I mean, I think given the options they had, they made the decision that, you know, good people would make, you know, under those circumstances.

GROSS: Allen Shawn will be back in the second half of the show. His new memoir is called "Twin." Shawn is a composer and pianist. Here he is performing one of his compositions. I'm Terry Gross, and this is FRESH AIR.


GROSS: This is FRESH AIR. I'm Terry Gross, back with Allen Shawn.

His new memoir, "Twin," is about how it's affected his life to have a twin sister, Mary, who is autistic. The memoir is also about growing up the son of William Shawn, who was the long-term editor of The New Yorker. Allen Shawn is a composer and teaches at Bennington College.

In trying to understand the mental state of your sister, you say that you think that maybe when you're composing and you're kind of in a composing trance, it may be the closest thing that you experience to what Mary, your sister, experiences.

Mr. SHAWN: Mm-hmm. Yes.

GROSS: Outside of other things that you think are close, like when you're sick or exhausted.

Mr. SHAWN: Right. Well, yeah. In writing this book I was realizing more and more the degree to which I could identify with her. And one of the ways I can identify is in the isolation that she experiences. And when I'm writing music I'm in my own little world and I guess I like to think of that, after writing this book anyway, as my own kind of autistic state.

GROSS: Why do you think of composing as being similar to being in an autistic state?

Mr. SHAWN: I think one of the characteristics of Mary and people like Mary is a quality of absorption in small things and a lack of social connectedness. And although I'm reasonably sociable, not as sociable as I'd like to be, but when I'm composing I'm really, deeply alone and it's just me and these notes on the page and these sounds in the air. And that quality of absorption reminds me of the way Mary used to look when she would be studying some plastic necklace on the floor at the age of five and just getting lost in the way the beads connected to each other. So I guess I'm theorizing that we all have an autistic side.

GROSS: What's your twin sister Mary like now as a woman in her 60s?

Mr. SHAWN: She has a very different quality when you're with her than she does if you're trying to talk to her on the phone. I spoke to her a couple of days ago and I was thinking about that. She's not someone who's going to originate thoughts and perceptions or ideas or make comments on the phone. She'll be most likely to just answer your questions with either the most routine answer or even a repetition of the question.

But when you're with her, she's intense. She looks at you. She's full of personality. She's full of humor. There's a kind of vibrating, passionate quality to her. As I say, it's almost as if she's repressing all kinds of perceptions of the world that she can't articulate in the way we're used to things being articulated. But you can't expect the give and take with her, even in person, that you can normally with people.

GROSS: For you, being a twin, and knowing that your twin sister is autistic and that she was taken away from you because of that and sent to an institution, this is a formative experience in your life. This is one of the basic building blocks of who you are emotionally and mentally. But do you have any sense of how much knowledge your twin has of you as being her twin, as somebody who she was once very very connected with and then at the age of eight, separated from?

Mr. SHAWN: I really don't. She certainly asks after Wally as much as she asks after me. And all I can say is that when we're together she looks very, very pleased. She immediately takes my hand and the connection is instantaneous. I wouldn't differentiate it, though, from the connection she feels for Wally or that she felt for her parents.

I don't think the concept of twin means anything, but I think certain memories are ineradicable in her; you know, the passage of time doesn't mean a thing. So she must carry within her some sense of intense familiarity with me. That's all I can say for sure.

GROSS: I think about what an extraordinary family that you're from. Your father being William Shawn, the former editor of The New Yorker. Your brother, Wally Shawn, an actor and playwright. You being a composer and music professor. Your sister, autistic. You and your father both sharing a lot of phobias. And also, your father having this huge secret that he was having an affair for most of his marriage, from 1954 till his death in the '80s, with Lillian Ross. It's such a mix of kind of like talent and secrecy and phobia and eccentricity.

And so, you know, I know you found out kind of accidentally when you were 30 that your father was having an affair. I know you kept it from your mother until your father got sick.

Mr. SHAWN: Right.

GROSS: What happened after you found out from somebody else, who had a little bit too much to drink...

(Soundbite of laughter)

GROSS: ...that your father was having this affair? Did you tell your father that you knew? Like, what happened after that?

Mr. SHAWN: Well, at that point I wasn't sure if I believed this. And, of course, it wasn't described as an affair so much as a way of life. I think the thing that disturbed me the most, to be honest - this may offend some listeners. What really disturbed me was that everybody else knew about this and that it seemed like we'd grown up in a strange bubble of not knowing this very, you know, simple and basic fact of his life.

I can see now how it happened. But rather than think, oh, what a terrible thing he did, I thought how terrible it was that both my parents thought it was fine that we would just find out, you know, 40 years later by chance, maybe when we couldn't even discuss it with them. So at that point, I was very eager to talk to him about it and we did have some wonderful long talks about it.

GROSS: He told your mother. Your mother knew. Your mother decided that she was willing to live that way and they both kept the secret from you and your brother, Wally.

Mr. SHAWN: That's right. And I think it was something she never came to terms with and never accepted. But the one thing she couldn't tolerate was its being discussed with us - with the boys, as we were called at that point.

GROSS: So when you told your father that you knew, he told you not to tell your mother that you knew?

Mr. SHAWN: Yes. And he explained...

GROSS: That must have been so hard to do. I mean, we were talking about keeping secrets in a family. But, like, to know that she knew and then to know yourself and yet not to be able to acknowledge to her that you knew and that you knew that she knew, I mean, what a huge secret.

Mr. SHAWN: Right. Well, one of the ironies of this is that constraint of that kind really interferes with having a good loving relationship. So...

GROSS: Well, it forces you to lie. It forces you to both lie.

Mr. SHAWN: Yes. And to see her lying and to know she's lying, and it's a circular thing. The sad thing is that it wasn't until she and I talked about this that I felt as close to her as I really would have all along. It was a barrier. I hadn't known there was a barrier to full understanding of my father's life. But I was highly conscious of the fact that there was this barrier between me and my mother after I knew this.

GROSS: When she started opening up to you, did you get a sense of what was in it for her to live in a relationship where your father had a lifelong relationship with another woman at the same time? She was willing to accept that.

Mr. SHAWN: She was...

GROSS: So what was in it for her, on her end of accepting that, as opposed to what a lot of women would do, which is give an ultimatum, like, you can't be married to two people so choose her or choose me, you can't live with both?

Mr. SHAWN: Well, obviously they all decided at some point that you can be married to two people. I think it wasn't that she accepted it. She accepted him. She deeply loved him and their relationship was still alive. It certainly wasn't a matter of just convenience that they stayed together. But also for his part, I think that this kind of duality was something in him. He was incapable of making a choice either. And one way of looking at it is perhaps this was also necessary for their marriage.

As I say, there is a lot you don't know about any marriage. Because perhaps it was even more alive than it would have been otherwise. That's possible. When I think back to the atmosphere at home, yes, there were mysteries, but there was also love and romance in the air.

GROSS: Seeing your parents' unusual relationship and watching them parent you and your brother, as well as your autistic sister, did that make you any more enthusiastic or reluctant to enter into a marriage yourself and to become a father? Were you afraid if you became a father that your child would have developmental problems? Were you afraid if you became a husband that you'd have to have two marriages instead of one? I mean, you were exposed to such extremes in your own family.

Mr. SHAWN: Well, I probably should have been afraid.

(Soundbite of laughter)

Mr. SHAWN: But I entered into my first marriage and parenthood of my first two children very unaware of how burdened I was by all of these issues. But I think the net effect of all of that was to make me feel quite strongly about family and to want to be a parent. So you're going to have to figure that one out, Terry. But I think that's the effect it had on me.

(Soundbite of laughter)

GROSS: OK. Allen Shawn, thank you so much.

Mr. SHAWN: Thank you.

GROSS: Allen Shawn's new memoir is called "Twin."

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