One day, author and professor Rachel Simon was invited by her sister Beth, who has an intellectual disability, to join her on the buses for a year. Rachel said yes, and so began a journey that changed both their lives. The product of this adventure is the acclaimed Riding the Bus with My Sister, a book chronicling the daily life of Beth, who spends her days seeking out one bus after another, creating powerful connections with the drivers and passengers. The following are excerpts from Rachel’s diary as her own journey takes her from bus to book to Hallmark Hall of Fame movie.
March 7, 2002—I was driving to work today and, as authors do, entertaining extravagant fantasies about the upcoming publication of my book, Riding The Bus With My Sister, when zing! a realization seized me. If a movie gets made, I thought in a trace of inspiration, Rosie O’Donnell should play my sister. Like Beth, Rosie has dark hair, a plus-size physique and a fun-and-feisty disposition. And though Beth possesses a passion for riding buses all day, every day, and though she also happens to have a developmental disability, I can easily see Rosie befriending bus drivers.
The realization made me giddy, although casting a movie was the last thing I’d dwelled upon as I’d chronicled the year I joined Beth on her buses. I considered it unlikely I would be called upon to contend with such dilemmas, as my previous books had barely attracted readers, much less Hollywood agents. Thus, I harbored no secret dreams that anyone, actress or not, might be the Cathy to my Patty, the princess to my pauper.
Besides, how would I, an obscure, curly-haired, Payless-wearing, newly married, Delaware-residing professor and writer, contact Rosie to let her know that I had cast her in a non-existent movie for a not-yet-published book. If only I were a semi-famous, Vanity-Haired, Manolo-wearing, single-in-the-city, bi-coastal, Guild-and-gilded schmoozer. But I know no one even six degrees away from Hollywood. None of my buses goes there.
March 11, 2002—I am speechless, reeling. Today, five days after my Rosie revelation, I checked my voicemail and heard: “Hi, Rachel Simon. This is Rosie O’Donnell. I read your book. I love your book. I want to make a movie of your book and play your sister.” Exclamation marks would not do justice to my shaking, teary reaction. Confused and excited, my agent Anne Edelstein figured it out. In January, she had submitted my book in manuscript form to Rosie Magazine so the editors might run an excerpt. Unbeknownst to Anne, the editors sent their selection to Rosie for approval. Rosie was so taken by the chapter that she asked to read the whole book, which she devoured in short order. Then she called. Could it be that we’re not six degrees apart, but only a transfer away?
March 12, 2002—I have met Rosie O’Donnell. I shook hands with a tall (to my five-foot height), smiling, bikeshorts-and-stage-make-up-wearing force of nature who immediately said in her distinctive voice, “You know what I like about your sister? She follows her own mind. She is not a stereotype. I totally relate to her.”
March 14, 2002—I drove the few hours to see my sister and took Beth and her boyfriend Jesse to dinner. While we waited to place our orders, I asked if Beth knew who Rosie O’Donnell is.
“Well, she wants to make a movie of the book. And she wants to play you.”
“I won’t say yes if you don’t feel okay about it.”
“Really? What do you think of this?”
She looked into the distance. Then she looked back.
“Fine,” she shrugged. “So, can I get the grilled cheese?”
I laughed. The stomach, or stardom?
September 2002—The book has pulled out of the garage and headed into the world. Beth is so thrilled and, to no one’s surprise, is more impressed by the book itself. A new favored object, as highly esteemed as her cherished yellow radio and Pooh backpack—she’s kept a copy in her possession every minute since it came out. She’s also read it (to the best of her ability), read it again to Jesse, drawn on the pages and memorized her favorite sections: the ones about her romance with Jesse and the ones about her love of Donny Osmond.
November 2003—What a year! I’ve heard from thousands of people with disabilities and their families, thousands of public transit workers. I’ve traveled the country, where I’ve heard whole libraries of stories and have learned that for millions of people with disabilities, seniors and folks who can’t afford or drive cars, public transportation is the key to a full life. It’s the difference between the job programs or educational opportunities or Tuesday-night bingo games that fail and the ones that succeed. Sure, transit is also important for the environment and congestion, but I now get angry when someone says, “We don’t support transit around here because everyone drives.” No, not everyone. Not the people who can’t drive. A Special Olympics athlete said to me recently, with tears in her eyes, “The day I learned to ride the buses was the day my life began.”
In this year I’ve also watched Rosie O’Donnell from a distance as she’s made her way through quite a journey herself: folding her show and magazine, revealing her personal life to the public. I cringe when late-night talk show hosts crack jokes at her expense. One of my goals with my book was to emphasize that everyone—the person carrying a Class C operator’s license, the one with the yellow radio, the one with the college lesson plans— is complex, unique and worthy of dignity. Such sentiments are far from trendy, yet I feel more convinced than ever that each of us warrants respect and compassion. Even the housekeeper who tidies my hotel rooms. Even celebrities.
January 14, 2004—Faces are now attached to this vague idea of a film. We have met the producer, Larry Sanitsky, and screenwriter, Joyce Eliason, a well-known pair who’ve adapted numerous books for television. It remains tentative, however, until they write a script. Then CBS and Rosie must still say yes.
I wasn’t sure what to expect before I met Larry and Joyce. They greeted Beth warmly when they met her at dinner, complimented her colorful sense of fashion, engaged her in conversation and treated her in a relaxed, everyday way, seeing her not as a child or an oddity, but an adult. Then the next day, despite the snow and ice on the ground, the darkness and the wind, they met Beth at the bus terminal well before dawn, ran with her for early buses, laughed at themselves when they messed up, pressed on through serial-bus-rider fatigue to keep going, chatted with passengers of all ages and dispositions, marveled at the drivers’ stories, and in an effort to understand the concerns of Beth’s foes, marched up to the door of a bus operated by a driver who doesn’t like her. (He shut the door in their face and drove off.) We like them. I feel they are likely to write a respectful script, one that communicates Beth’s independent spirit and friendships and the arc of my learning to accept her.
May 5, 2004—We got the green light! Through the winter and spring, as our chilly adventures with Larry and Joyce have receded into memory, I have wondered if the idea of a movie had simply drifted away. Writers receive far more no’s than yes’s in this world, as do people with disabilities and their families, so one simply grows accustomed to quietly vanishing hopes.
Then this past Friday, Larry phoned to say that CBS had picked up the movie. Really? Yes, he said breathlessly, and the news will hit the trades early next week, and he will FedEx me the script for tomorrow, and they would like my thoughts as soon as possible, and he will be leaving for Toronto in a few days to scout out locations, and they start shooting in mid-June, and Rosie will try to meet Beth in a few weeks, and someone will get me dates soon so I can visit the set.
Happy, relieved and disoriented from this avalanche of news, as well as the prospect of so much work in too few days, I called Beth right away. “They’re going to make the movie!”
“Rosie might visit. How do you feel about that?”
“Fine,” she said, a smile in her voice. “And I have 51 videos and 32 CDs.”
Within a few days, racing through crowded airports with my cell phone to my ear, I heard messages from friends: “I saw the movie announced on CNN!” “In Variety!” “I read about it online!” As I hung up the phone and darted among the throngs, I considered that since the movie had just been announced in entertainment headlines, some of which were surely seen by some of the strangers I was passing, we weren’t really strangers anymore, not in the usual sense; they now knew of Beth and me. This realization heartened me, because for over four decades I have been trying to get the world to pay attention to my sister, to treat her and others like her better. Finally, through the catalyst of a celebrity I don’t know and a script I did not write, we—or even better, the facsimile of us that will appear on the screen—have been granted some attention. All the screaming I did at bullying neighbors when I was seven, all the blushing I did at rude classmates when I was thirteen, all the envy and resentment I blurted at my unencumbered peers when I was twenty-two, all the remorse and affection and release and pride I felt toward my sister at forty, when I finally accepted her right to live a self-determined life and make her own choices—all of it would finally get heard.
This feels really good, I think as I sit here, anonymously, on a plane. Almost as good as owning 51 videos, if I may be so presumptuous.
May 18, 2004—I have actually felt slightly anxious, having had too much time to dwell upon the script. While it retains the crucial themes of friendship with the drivers, the conflict and resolution between the sisters and the right of people with disabilities to make their own choices, there are things I wish they would include, like the word self-determination.
Larry emailed this morning that a famous actress has expressed the desire to play the part of Rachel: Andie MacDowell. Of all people.
May 26, 2004—Okay, now it’s too much. Andie MacDowell is a certainty—and Anjelica Huston will be directing. Anjelica Huston! I have never had such a flood of good news in my life, so much that, as Anne said, “This is beyond reality.”
June 25, 2004—I heard from Larry, and what a wonderful call it was. Throughout it all, he was bursting with excitement about how well the movie’s going. He started by explaining the movie had been relocated from Toronto to Hamilton, a gritty, working-class city an hour from Toronto, which Larry said is the atmospheric twin of the city where Beth lives.
Rosie is terrific, he went on, and is giving a performance worth an Emmy nomination. Although Rosie was unable to work in a visit with Beth, the star spent time in New York City with a person with developmental disabilities. By combining that experience with observations gleaned from a video I’d sent her of Beth, Rosie has developed a lively, charming, funny, rich character that she inhabits so fully, she often ad-libs lines throughout her scenes. Andie is beautiful, portraying a Rachel with both sadness and love in her eyes and a face that in every shot evokes a pre-Raphaelite painting. And Anjelica, with her deep insights into moviemaking and human dynamics, has made many wise decisions and suggestions. (Now, if only one character would say the key word: self-determination.)
June 30, 2004—It would be an error to believe that Beth really does not care. I think the truth is she takes pride in dismissing what others find important, perhaps because she is constitutionally contrary. She also tends not to give much thought to any theoretical phenomenon until it has made the transition into the concrete. That is what happened with the book, which generated no excitement until the day she first held it in her hands.
July 4, 2004 —I am sitting in the Philadelphia Airport, twenty minutes from boarding the flight to Toronto, from which I’ll be traveling to Hamilton. I am alternating between feeling nothing and feeling mildly anxious. Aren’t you excited? No, actually, I feel like my sister, boarding a bus for the first time.
July 8, 2004—A movie shoot is a sleepless daze. The crew works for six hours before lunch, which might be served well into the night if the workday begins at two p.m. Then shooting resumes for another six hours, thus making twelve-hour workdays the norm.
The first day I arrived on the set at about three p.m. We parked on a narrow residential lane among two-story detached houses and walked through the windy, cloudy afternoon toward the one-way street at the end of the block. We turned onto this road, and there I saw many more cars, people milling about, the food truck, technical equipment, and at the far end, train tracks and a high, metal train bridge, on top of which most of the shooting of the day was to occur. Within moments I was handed headphones and the script and was sitting down in my doppelganger’s chair, looking into the two monitors, one for each camera. Then someone said, “Action.”
Over the next two days, I relived multiple realities simultaneously. I kept being in the memory itself. I kept recollecting the writing and editing of that scene into my computer. I kept seeing the text published in the book, feeling the frisson of reading it in Joyce’s script, being riveted by the technical aspects of getting it onto the monitors before me, and knowing that soon I would see it once more, on a bigger screen and in richer color, in my living room—along with millions of other people.
I admit that at times I felt awkward. I had no function in this beehive of busyness, yet I had total freedom—I could wander around everywhere, from the hair truck to the director’s tent. I made friends with folks in wardrobe, hair, make-up, lighting and sound. But what does one say to people who are famous world-wide? Rosie and I discussed Beth, politics and Rosie’s kids. Andie and I spoke about North Carolina, dating, turning forty and Andie’s kids. Anjelica and I talked about directing, since as director she wasn’t at liberty to chat like the others.
Soon they will all see the fruits of their labors when they watch the finished movie. I certainly will, focusing perhaps a bit much on the scenes I saw filmed, and in particular on one of the last scenes, which will open on me. Yes, it’s true. With encouragement from the hair guy, I asked Larry if I could be an extra, so he put me in an important scene that takes place in an art gallery. Although a few dozen strikingly tall, gorgeous and designer-clad people mill about through the scene, the shot opens on short and ordinary Rachel Simon—the source Rachel, as I kept saying to the crew—pretending to talk to another visitor in the gallery. The viewer likely won’t realize that I felt compelled to make the most of my silent debut, but rather than move my mouth in meaningless shapes I decided to make the shapes add up to a message that was not explicit in the script: “The answer,” my lips read, for those who have the skill or wherewithal to read them, “is self-determination.”
We might not have much we can control in this world, but perhaps with luck, opportunity and a little of the irreverence I have learned from my sister, we will still influence the world whenever we can.
by Rachel Simon