The Think Piece Interview: Rachel Simon

In 2002 Rachel Simon became a brand name in the disability community with the publication of her book Riding the Bus with My Sister, in which she chronicles a year in her life riding Philadelphia-area buses with her remarkable and unforgettable sister Beth, who has an intellectual disability. It’s a poignant, touching read, and it became a best-seller, even being made into a movie starring Rosie O’Donnell. On March 5 the book is being given a new paperback release from a new publisher, and it will include a new section giving updates from Simon and her sister. If you loved the book, you’ll want to read this. We spoke with Simon recently about the whirlwind tour that she generated for her book, the exasperation and joy of having a special-needs sibling, what her life is like now compared to in 2002, and how she learned of a secret national-transit fund.

TP: Can you tell us what it was like to see Riding the Bus with My Sister turn into such a sensation?

RS: What I have experienced as an author is somewhat unusual. When people think of successful authors, they think of a book tour. What they don’t think of is what I’ve done for 10 years now, which is speaking engagements. That came as a surprise.

Right before Riding the Bus with My Sister came out and it was still in galley, it was my fourth book and I  knew the importance of getting out there and making sure people knew about the book in advance of it coming out. After the second book and during the third book, I worked for Barnes & Noble. I ran the events at their Princeton, New Jersey, store, which at that time was one of their top twenty stores in the country. In running the events, it was great for helping me lose my fantasies, stop my magical thinking, and see the reality of what it is to be an author. I’d been very well reviewed for my first two books, but they hadn’t sold, and then you walk into the bookstore to go to your job every day and you see what books are selling and what books aren’t and you start thinking, Why are those selling and why aren’t those? From running events, I could also see that, well, if you’re publishing fiction, unless you’re a name like Joyce Carol Oates or Russell Banks, it’s really hard to get turnout at an event. But if you’re writing nonfiction, as long as the event is going to be presented in a way that looks attractive to someone who might attend, you can fill the chairs. I started to think maybe I should switch to nonfiction.

So many people think that all you have to do is get a book deal. Well, no, that’s just the start. All of my books were with major publishers, and they did kind of the standard thing, send the book to reviewers and stuff like that, but most books at that time had a three-month shelf life, and now I don’t even think it’s that. People just don’t realize the imperative of finding ways to generate an audience. I realized early on that there were certain decisions that I could make that might assist me in finding an audience without compromising my integrity. I think that’s one of the secrets. You don’t have to not be who you are. You can be exactly who you are and can get an audience that you just didn’t know enough to generate.

For years when I was teaching creative writing I would tell my students, “If you’re really serious about being a writer, you have to go work in a bookstore. You have to go see the floor, up close, what the reality is, what readers actually do instead of your fantasy of what readers do.” People are always saying to me, I have this great idea for a book, and almost inevitably it’s a pretty small idea, it’s a cliché idea a lot of the time, and they really don’t see that it’s not competitive, but they’ll say, “Oh, my friends think it’s great. They tell me that if they saw a book like that in the bookstore they’d buy it.” But the thing is, their friends don’t even walk into bookstores. Their friends are not reliable to turn to for this.

When Riding the Bus with My Sister was getting ready to come out, I started doing things like writing direct letters to people in disability-related organizations, which I had never been connected with before, but I just got in touch with people, telling them about my book and asking them if they had a newsletter, if they could mention it in the newsletter, [if I could] send them the first chapter—things that are easier to do now online, I was doing through the mail. I’m actually a big believer in the mail if you really want to get someone’s attention; it’s a lot harder to hit the delete key.

TP: Did you catch some lucky breaks along the way?

RS: I did. I was at a conference, and someone whom I had befriended, Don Meyer, who’s the center of the sibling world and a wonderful person, was walking around with me and just saying, “Let me see who I can introduce you to. One of the great things about the disability community is people really do want to help each other.” So we’re walking around and we walk up to a booth for The ARC of the United States, and I was introduced to the executive director at that time, a man named Steve Eidelman, who’s a very big name in the field, and I handed him the galley, and he flipped through it and he said, “Would you like to be the plenary speaker at our national conference in November?” This was in July. And I said, “I’ve never done that before, but yeah, sure!” (Laughs). And at that point he said there would be a thousand people there.

TP: Oh boy.

RS: I know. And he said, “We can’t pay you, but we can fly you out there and put you up.” And I said, “OK!” So the book came out in the beginning of September and I did some of my local bookstores, so I was getting nice turnouts and everything, and I thought that was going to be it because that’s generally the best you ever get when you put a book out. But then I go to this conference, and the book had done OK, but it wasn’t blowing people away, and I thought, Oh boy, you know, all this effort, and agh!, but oh well. So I go out to Columbus and not only had I never given a talk before, I wasn’t even prepared. I brought some photos. I had arrived the day before and I went to see the tech guys and I asked, “How can I display these photos in front of a thousand people?” And they said, “Oh, we have this projector”—you know, kind of like the old thing you had in school, where you’d put something down and it would project up on the screen in the front of the room. I said OK and I kind of scribbled down an outline on the back of an envelope. I was so casual about it. And then I got up and I have to say it was like rolling off a log. I think it was because when you’re a family member to a special-needs sibling, you spend your life as a public speaker. You know, you’re always advocating, you’re always giving people what-for when they’re being rude, or using the R word, or being incredibly ignorant or hateful. I just thought, Wow, this is the opportunity I’ve always wanted. I knew enough about working in the book world that it wasn’t like I was just going to do the talk; I was also going to have a bookstore on site with my book available to sell. I had contacted the local bookstore, and they came, and we sold like 300 hardbacks, which … you never sell 300 hardbacks. So I called my publisher and said, “Hey, that worked out really well,” and then the next thing I knew a lot of people at that conference started contacting me and asking me to do their annual dinners, their annual conferences. So I went to someone my husband knew who knew how to do design really well and I said, “Can you help me put together some visuals for a presentation that I can do over and over so I don’t have to just bring this stack of photos?” And she said, “Oh do you mean a PowerPoint?” And I was so out of it, I didn’t even know what a PowerPoint was. She made me the most beautiful, thoughtful, sensitive PowerPoint. I said I don’t want text because you put text on the screen and nobody pays any attention to what you’re saying. She did this wonderful thing where she took the image of the bus from the cover of the book and put it at the bottom of the screen and as you move through the presentation, each new slide, the bus moves a little farther into the screen, so you’re actually watching it drive across your story at the bottom of it as you’re talking, and people always notice it and think, Wow, now I’m halfway through the talk, I’m three-quarters of the way, so it’s just this wonderful visual device and only a designer could have thought of it.

TP: And things started to build.

RS: They did. Then something even more unexpected happened. I started getting contacted by the public-transit industry, which I had never thought about. But they said, “You’ve been on our radar for a long time. Did you know there’s no work of literature that’s a positive portrayal of bus drivers until your book?”

TP: No kidding?

RS: They invited me to Washington, and a month later I had met all the big shots from all the big transit organizations, including in the federal government, in a single day, and one of them said to me—not a government person—“We have a secret transit fund, and if you do a talk anywhere in the country that is for transit organizations, we will fly you there and put you up.” I was like, Wow, this is the most amazing thing. By then I was getting invitations from the autism and disability community, and then I started getting them from the transit industry, and I started thinking, OK, someone wants me in Indiana, someone wants me in Ohio, and someone wants me in Kansas. How do I get from here to there? So now I could contact the transit people and say, Hey, do you have a talk I could do in Chicago? If you can put me up there, I’ll fly on from there to Ohio. They’d be like, OK. And it started avalanching. I had to start charging. And suddenly I was in the world of professional speaking.

TP: It gave you a second career essentially.

RS: It did. It grabbed me and pulled me into it. It wasn’t anything I pursued. It was something like five or six talks a week, all over the country. It was fabulous, and one of the reasons it was so fabulous is that people would meet me and they’d already read the book, and they would feel they knew me, and so at the end of the talk I’d go to the end of the book-signing line, and they’d be waiting there ready to tell me their story. Sometimes they’d start to cry. I’d immediately start doing all my book-signings standing up. I’m really short, so it’s actually better. So I just stand up, and if people need to be held while they cry, I hold them, and they cry. It’s so intense! And that started in 2002 just by Steve Eidelman taking a chance on me.

TP: And you continued with your grassroots outreach?

RS: I did. I’ll tell you know another thing that happened. Google was fairly new and at this time of year, late December, the book had come in September, I thought, Let’s Google the title and see what I see. Google was young enough and the book was new enough that there were only 400 hits, so I thought I might as well go through them all, so I went through them and at the very bottom were several churches that had put it in their book clubs, and I thought, That’s totally weird, because we’re Jewish and there’s nothing in Riding the Bus that struck me as particularly Christian to me. That said, a lot of the bus drivers are really Christian and a good half of the drivers talk about God, but it’s not like I’m pounding away a religious message. But that was part of the appeal. So I thought I’d call the people in the book clubs and ask why they picked the book. They were very happy to talk with me, and this was all over the country. They said things I wouldn’t have even thought. They said the bus drivers provide pastoral care for the riders, and the bus is symbolic of the role that the church plays. They also said it’s a picture of unconditional love. And then they quoted that line from Matthew: What you do to the least of my brothers and sisters, you do unto me. Of course, being Jewish, I’d never even heard that. I was like, Really? So I go and look it up and find out that it’s one of the most quoted sections of the New Testament. I was so taken by this, and simultaneously I received a letter from a pastor in a very rural part of Montana that included a sermon she had written using Riding the Bus, using Jacob and the things Jacob said. So I called her and asked, “Why is this so meaningful?” And she talked to me about reconciliation, and that’s a big theme in Christianity, and I had found out that it had been read by all these book clubs, so I thought maybe I should write letters to churches around the country and let them know that this book might work well with their book clubs, and if I came up with a letter, would she review it, and she said yes, and so I did. I wrote a letter saying these are the reasons people have chosen this book for their church book clubs and sent it out to thousands of places. And then I did a Jewish variation on it and sent that out to thousands of places. If somebody introduced me to someone in an organization, I would talk with that person about seeing if that organization would be interested in me speaking, and usually the person would say, “Yeah, but I’m not the person for you to talk to, but I can introduce you to that person,” and so it was just like this giant chain.

TP: It must have felt surreal to have everyone feel so personally connected to you all of a sudden.

RS: It was all a dream, and that was all before the movie.

TP: Tell us about that.

RS: They started making the movie in 2004. Of course, I’d been traveling the country for two years by then. For two years I had been able to say, “Well, Rosie [O’Donnell] is interested; she might make a movie.” So people were really, really excited for when it happened. And then when the movie was ready to come out in 2005, because I had been traveling for three years, in the disability world, in the transit world, sometimes schools, medical schools, [meeting with] genetic counselors, and on and on and on, because of that, I just reached out to them and said, “Would you like to use this as an opportunity to help your organization?” I proposed things like phantom fundraisers, where the organization would write to their members that they’re all going to try to watch this movie from their homes on the night it airs, and if you do, send us $5, or something like that—pledge that you will send in $5 if you watch it, or something like that. They had a big screening in L.A., and because of my connections in the transit world, it all got worked out where the stars showed up for the red carpet not in a limo but on a bus.

TP: That’s perfect.

RS: The funny thing is, I had never been on a book tour before, and everyone in the world kept saying, “How’s your book tour going?” I was like, I’d never been on a book tour. I’m not on a book tour. It’s professional speaking. There’s something called the National Speakers Association, which I do not belong to, where it’s people who do this. And, of course, now I pay a lot more attention to the speaking world by being drafted into it, and I now have someone who represents me.

TP: Can you tell us about what it was like when you first started riding buses with Beth?

RS: Sure. When I started, it never occurred to me to do a book about her and me. When she first asked me to ride with her, I thought, Well, that would be good for her. When I started, I think my motives were probably pretty controlling motives, but I think there was an element of I’m tired of feeling so distant from her and feeling so guilty, and this will give me an opportunity to do something about that. But when I started riding with her, I was initially more attracted to the bus drivers than her because my relationship with her was so full of conflict and my anger and that whole dark voice thing. But the bus drivers were so colorful and interesting, and I was an anthropology major, and I was so taken with the way they spoke, and I wanted to capture that for myself, because I think when you’re a writer and you hear someone speak in an interesting way, you think maybe I’ll eventually use that syntax, some of those word choices. One barrier I had is I’ve had a real severe problem since I was a kid with car sickness; you’d never guess that my career would spring ahead because of a bus! I didn’t even drive until my mid-30s. Elevators make me sick, motion makes me sick. So when I started riding the bus and the drivers were so interesting, I couldn’t really write down what they were saying because I just couldn’t do it. So I started carrying a tape recorder. I’d tape the drivers and then I’d go home and transcribe it. It was because of that that I decided I should try to pitch a book. My idea was really driver wisdom, and Beth and I would be the background character. I came up with a proposal and a writing structure—a chapter a month on the bus, a chapter a month off the bus—but it started overwhelming me how much my stuff on and off the bus had to do with my relationship with her—the anger. I was increasingly getting tense about it and feeling bad about it, and then there was this scene late in the book when I wake up on Thanksgiving morning at her place and we’re supposed to go to our brother’s house, and right before we’re getting ready to leave, I say, “Oh, I should take a shower,” and I ask if I can borrow a towel, and she says, “If you want,” and I say, “Well, I want to or I wouldn’t have asked you. Is that OK?” And she says, “Well, I can’t stop you.” And we had a few tape loops of this and I just blew up at her and I said, “I hate you,” and she gave me this totally pain-filled look, and I drove her to my brother’s and didn’t say anything else and felt really bad. I called a friend who had been involved with my proposal writing, and reviewed it, and said, “On Monday I have to send this book back and tell the publisher I’m going to return their advance.” And she said,  “Why?” And I said, “It’s because I told my sister I hated her! I can’t write this book, are you kidding me?” And she said, “That’s exactly why you have to write it. That is real. Your struggle with this is what’s going to make your book really matter.” She spent four days on the phone talking me out of calling the publisher on Monday. And it was after that that I realized while I was planning to write a book about the drivers, I was really writing a book about the truth of our relationship. It was sobering. And It’s an ongoing process.

TP: Is Beth still riding the buses?

RS: Oh, yes. And Jacob still remains a very major driver in her life. Some of the drivers have been trying to teach her Spanish. I will say if you need to boil the book down to people who don’t know it, for me it’s accepting something called self-determination. It’s a civil rights issue, really. That she has the right to live her own life according to her own choices. If she chooses to ride the bus all the time, I need to accept that, just like I need to accept that my brother is a lawyer or my older sister lives in the Southwest. If what you decide first is that you love someone, then you learn how to accept them the way they are. If you decide that accepting them the way they are is the condition to love, then you get yourself in trouble. That’s what I’d been doing.

TP: And after things calmed down, you decided to write a novel?

RS: I did. My novel The Story of Beautiful Girl, which is also about disability, was prompted in part by the things these people would say to me in the book-signing lines. They would talk to me about living in institutions or having a family member in one or working in one. And my sister did not live in an institution, and this really wasn’t something I knew much about, but the more they talked to me about it the more I thought, My God, this is something most Americans don’t know about. If they know about it at all, they confuse these institution with people who have mental health issues and they’re totally different kinds of places. I wanted to write something, and I realized I couldn’t do it as nonfiction because I hadn’t lived it.

TP: And you wanted the characters to be real human beings, not caricatures.

RS: You know what, when I was growing up, I’d see a character that I thought was like Beth, and then I’d think, Not really. Lenny and George, really? I love Flowers for Algernon, but his friend dies, too. The mouse dies at the end. It always ends in this tragedy. Almost every other time I’d see a character with developmental disability in fiction, they would be so good. They wouldn’t be like Beth. They wouldn’t have their little wiles. They were never people who could lie, they were never people who were clever, they were never people who were manipulative, all those things that the rest of us are.

TP: Wouldn’t people tell you they were “God’s angels” growing up?

RS: Yes! It would get me so mad. It’s so infantilizing.

TP: And you wanted to make it a love story?

RS: I did. After the success of Riding the Bus, I figured if there was ever someone who was going to write a love story about people with disabilities from their point of view, I was in the position to do it.

TP: How did that go?

RS: I sat down to write with my notebook, but before I did that, I contacted a friend who had helped me at times with my e-mail overload, a friend named Bonnie, and I asked if I could turn in something to her once a week just to have an excuse for production, and I told her, “You can’t tell anyone we’re meeting once a week or that I’m even working on anything,” and she said OK. So I sat down that first time, about a month and a half after losing my job, and I wrote my first short story in years. It was written from the point of view of someone with mental health issues, and she said, “This is great. Do this for next week, write from the point of view of someone who’s different.” And so I sat down for my next writing session, and it was kind of on a lark: What if I started a novel? It was kind of like a joke for myself. I thought, How would a novel start? “It was a dark and stormy night.” (Laughs) My point-of-view character was a lonely old woman who lives in a farmhouse on the side of a road, and she’s a widow and she’s a retired schoolteacher, and a knock comes to her door, and I went to the door with her, wondering who’s at the door, and there were these two people, one’s a woman named Beautiful Girl, and she was white and had developmental disabilities and was mute, and the other was the love of her life, a man who was a John Doe, John Doe 42, who was loosely based on somebody I read about in a book. He’s African American and deaf but did not have an intellectual disability, and they both had been institutionalized. They’re on the run and I suddenly realized, Oh, my God, this is the institution book I wanted to do. I realized they had a secret baby with them that was the result of a sexual assault, and they had escaped to deliver the baby and live in freedom as a family, and it was like this lightning bolt. I could just kind of see how this widow would give them refuge in her house for a few hours during which time they hide the baby, and she gives them clean clothes, and as they’re coming down the stairs from the attic where they’ve hidden the baby to have dinner with her, the authorities find the house and burst in and capture Beautiful Girl, and the man escapes out the window, and just as Beautiful Girl is about to get carted away, she manages to whisper to the widow the first two words she’s said in years: “Hide her.” The widow says, “I will,” and so it’s like they’ve made this secret pact and that’s how the first chapter ends. That came out of nowhere. It took me two days. Out of nowhere. And I was like, Wow, I’m on to the next book. I brought it in for Bonnie for our next meeting and she read it, going, “Oh my God, oh my God, oh my God.” She gets to the final line and says, “Where’s the next page?” and I say, “I guess it’s next week.” So then I wrote a chapter a week for four weeks and only she saw it, nobody else knew about it, and after four weeks, I threw her out of the book, as I didn’t need her anymore. I just wrote it in isolation for the next year and a half.

TP: How did the launch of The Story of Beautiful Girl feel compared with Riding the Bus with My Sister?

RS: When The Story of Beautiful Girl came out, that was the first time I was on an official book tour. That’s when the publisher sets it up. They’re not at gala events, you’re not speaking at conferences. You’re speaking at bookstores, usually independents. You don’t get paid. You don’t need a speaking representative to set it up. The publisher pretty much pays for the whole thing, but you don’t get an honorarium or anything. And they fly you from city to city to city to city, pretty much one a day, and put you up in hotels. It’s a really nice time, it’s a lot of fun, but it’s like two weeks long. When you’re a professional speaker, that can be everyone from the guy who speaks about leadership at business conferences to Bill Clinton, who could headline any kind of organization that can pay for him. It’s a very broad field with a wide range of income and a wide range of venues, but it’s also a world that when you become known as someone who can do it, it generates its own traffic.

TP: Now that you’re so established as a speaker, do you find it difficult to find time to write, or do you find yourself not even wanting to write as much anymore?

RS: There have been times in the last ten years where I’ve found it very easy to write on airplanes and in hotel rooms. The past few years I haven’t felt that way. I think part of why is I’m a thank-you note writer, and there was a period when I got lazy doing my thank-you notes, and when I was doing my book tour in February, I was reminded all over again of the value of thank-you notes. When you’re on a book tour, you’re not there alone. In each city there’s a media escort, which is a profession. It’s people who live in those cities and drive authors around to events and get their food and make sure they’re comfortable and everything. The first person I worked with had been doing this for twenty-five or thirty years. She really knows how to interact with authors. She had told me all these little extra things that were very nice to hear. She told me that the best authors, when they go on to the next city, they send a thank-you note written in fountain pen to everyone they dealt with, that brings up something specific about that person so that it’s clear that it wasn’t written before the interaction. As soon as she said that, I thought, Yeah, it’s true. I immediately junked everything else I was going to do on the airplanes and the hotel rooms and got some really nice stationery at the next stop, and I didn’t get the fountain pen—I’ve yet to get a fountain pen—but I just started writing thank-you notes to every person I’d met, ever since, which has pretty much taken up my flying time, expressing gratitude. Because people do you a good turn, and to not acknowledge that is just rude. But my plan now is to say, “Goodbye, world” and sign off on e-mail and social media for a while. My life is this constant tension of, I love the speaking, I love the writing, but how do I manage to do both? It’s putting up the floodwalls. I’m just going to go offline and say goodbye to everyone and sit down and work. You have to have a personality where you can be both very private and very public and switch back and forth from one to another.

TP: You must have learned a lot about budgeting your time after becoming so in demand in 2002?

RS: One of the things that was uncomfortable for me writing Riding the Bus was thinking that, as people were looking at Beth in a judgmental way and if I were accepting of her, they would transfer that judgmental eye onto me. And while she was the one riding the bus, if I accept her riding the bus, would I get judged the way they judge her? And then I realized that my thinking that way was really kind of co-dependent. I wasn’t having clear boundaries between myself and her and between these other people and me, and if they wanted to view me in a judgmental light, be my guest, but it doesn’t have to mean I have to judge myself that way. I can accept Beth the way she is and say that’s fine, and if other people don’t think that’s fine, that’s their problem. But that’s really setting up boundaries and really being secure in your own feelings. And it’s the exact same thing about being so available. Everyone wants you to look at what they’ve posted on Facebook—read what I’ve posted on Twitter, and read my blog, and read my book, will you review it on Amazon, will you this, will you that, and on and on and on and on—and so I think a lot of what life has turned into for me is learning how to say no and not feel guilty. And if people want to be annoyed with me, go ahead, be annoyed with me. I have to do what I have to do. It means no co-dependent feelings, being just very clear with the boundaries and recognizing you will be judged for it but valuing what you will get from doing something more than you value what people will think of you.

This interview has been condensed and edited for publication.

For more on Rachel, go to http://www.rachelsimon.com/.