Riding the Bus with My Sister: A True Life Journey

By Rachel Simon

A “heartwarming, life-affirming” memoir of a relationship with an intellectually disabled sibling: “Read this book. It might just change your life” (Boston Herald).
 
Beth is a spirited woman with an intellectual disability who lives intensely and often joyfully, and spends most of her days riding the buses in Pennsylvania. The drivers, a lively group, are her mentors; her fellow passengers, her community—though some display less patience or kindness than others.
 
Her sister, Rachel, a teacher and writer, camouflages her emotional isolation by leading a hyperbusy life. But one day, Beth asks Rachel to accompany her on public transportation for an entire year—and Rachel accepts. This wise, funny, deeply affecting book is the chronicle of that remarkable time, as Rachel learns how to live in the moment, how to pay attention to what really matters, how to change, how to love—and how to slow down and enjoy the ride.
 
Weaving in anecdotes and memories of terrifying maternal abandonment, fierce sisterly loyalty, and astonishing forgiveness, Rachel Simon brings to light a world that is almost invisible to many people, finds unlikely heroes in everyday life, and, without sentimentality, wrestles with her own limitations and portrays Beth as the endearing, feisty, independent person she is.
 
“With tenderness and fury, heartbreak and acceptance . . . Simon comes to the inescapable conclusion that we are all riders on the bus, and on the bus we are all the same.” —Jacquelyn Mitchard, author of The Deep End of the Ocean

• Language: English
• Publisher: Open Road Integrated Media
• Release date: Mar 5, 2013
• ISBN: 9780547344843

Rachel Simon

RACHEL SIMON has written for the New York Times, Glamour, Vice, NBC News, Vulture, and more. Previously, she was an editor at Bustle, HelloGiggles, and Mic. When not writing, she teaches at Gotham Writers Workshop and Redbud Writing Project and creates custom crossword puzzles through her Etsy business, YourCrossword. A graduate of Emerson College and a New York native, she lives in Raleigh, North Carolina, with her husband, dog, and cat. You can find her on Twitter (@rachel_simon) and at rachelsimon.blog.

Book preview

title page

Contents

---

Title Page

Contents

Copyright

Dedication

Author’s Note

January

The Journey

The Time of Snows and Sorrow

February

Hitting the Road

The Professor

Fighting

March

The Pilgrim

Streetwise

Into Out There

April

The Dreamer

The Drivers’ Room

The End of Play

May

Lunch with Jesse

Matchmaker

The Pursuit of Happiness

June

The Earth Mother

Disabilities

Goodbye

July

The Optimist

Break Shot

Gone

August

The Loner

Nowhere

Be Not Afraid

Inside the Tears

September

The Jester

Surgery

Releasing the Rebel

October

The Hunk

The Price of Being Human

Come Home, Little Girl

November

The Girlfriend

The Eighteenth Hole

December

Swans and Witches

Finding the Twin

Iz Gonna Be All Right

January

Beyond the Limits of the Sky

A Year and a Half Later

The Miracle Maker

Ten Years Later

Rachel

Beth

People with Intellectual and Developmental Disabilities

Acknowledgments

Get Involved

Reading Group Guide

About the Author

Connect with HMH

Footnotes

Copyright © 2002 by Rachel Simon

All rights reserved

For information about permission to reproduce selections from this book, write to [e-mail] or to Permissions, Houghton Mifflin Harcourt Publishing Company, 3 Park Avenue, 19th Floor, New York, New York 10016.

hmhbooks.com

Visit the author’s Web site: www.rachelsimon.com.

The Library of Congress Cataloging-in-Publication data is available.

ISBN 0-618-04599-6

eISBN 978-0-547-34484-3

v7.1118

For Cool Beth

Author’s Note

Some of the individuals who participated in this story asked me to change their names. In the interest of honoring those requests in a way that would not tempt readers to sort out the real names from the invented, I chose an egalitarian approach and altered everyone’s name, except for my sister Beth’s and mine. In addition, I changed details about the location to help preserve Beth’s privacy.

January

The Journey

"Wake up, my sister Beth says. We won’t make the first bus."

At six A.M. on this winter morning, moonlight still bathes her apartment. She’s already dressed: grape-juice-colored T-shirt and pistachio shorts, with a purple Winnie-the-Pooh backpack slung over her shoulder. I struggle awake and into my clothes: black sweater, black leggings. Beth and I, both in our late thirties, were born eleven months apart, but we are different in more than age. She owns a wardrobe of blazingly bright colors and can leap out of bed before dawn. She is also a woman with mental retardation.

I’ve come here to give Beth her holiday present: I’ve come to ride the buses.

For six years, she has lived on her own. In her subsidized apartment, a few blocks off the main avenue of a gritty, medium-sized Pennsylvania city, each of her days could easily resemble the next—she has a lot of time, having been laid off from her job busing tables at a fast food restaurant. She has enough money to live on, as a recipient of government assistance for people with disabilities.

But Beth also has something else: ingenuity.

This trait isn’t generally ascribed to people who live on the periphery of society’s vision. Like indigent seniors, people with untreated mental illness, and the homeless, Beth is someone many people in the mainstream don’t think much about, or even see.

Six months after she moved to her fifth-floor apartment, she realized that she was lonely, and had consumed all the episodes of The Price Is Right and All My Children that she could tolerate. So one day she decided to ride the buses. Not just to ride them the way most of us do, and which her aides had trained her to do a few years before. She wasn’t interested in something as ordinary as getting from one location to another. She wanted to ride them her way.

It was, Beth recalls, October 18, 1993, when, for reasons she cannot remember, she first picked her monthly bus pass off her coffee table. Then she pressed the first-floor button in her high-rise elevator, walked through the vestibule to the street, hailed a bus on the corner, climbed the steps toward the driver, settled into a seat, and looped through the city from dawn to dusk, trying out one run after another, bus to bus to bus. Soon she was riding a dozen a day, some for five minutes, others for hours, befriending drivers and passengers as she wound through the narrow streets of the city and its wreath of rolling hills. Within weeks she could navigate anywhere within a ten-mile radius, and, by studying the shifting constellations of characters and the schedules posted weekly in the bus terminal, she could calculate who would be at precisely which intersection at any moment of any day. She staked out friendships all over the city, weaving her own traveling community.

Beth’s case manager had not suggested this, nor had Regis and Kathie Lee, nor even Beth’s boyfriend. This idea was hers alone.

We hurry down Main Street, the moon setting behind the buildings. My guide, whose fuzzy brown hair is still wet from her morning bath, points out the identifying numbers on bus shelters, the scowls of grouchy drivers. She wears no watch, telling time instead by the buses.

We dart into the downtown McDonald’s, already, at six-thirty A.M., filled with early risers: clusters of the elderly playing cards, solitary office workers bent over newspapers. Beth orders coffee, though she doesn’t drink coffee, palming out the eighty-four cents before the server asks.

Then we bolt into the dawn, making a beeline for a bus shelter. Head craned down the street, Beth giggles as she once did when I took her to a Donny Osmond concert: thrilled, in her element. She clutches her yellow radio and a tangle of key chains—twenty-nine, by her count—Cookie Monster, smiley faces, peace signs, which hold a total of two keys. She does a drumbeat on her laminated bus pass, stickered 000001. Every month she renews it, arriving first in line at the sales window. That sticker is her private coat of arms, proof that she’s queen of these routes.

Our first bus draws up to the curb. The driver, Claude, throws open his door as if welcoming us to his house. Beth clomps aboard, arm thrust forward with the coffee. He takes the steaming plastic cup, then thumbs four quarters into her hand. Our agreement, he explains to me.

Then she spins toward her seat—the premier spot on the front sideways bench, catty-corner from his, so she’ll be as close to him as possible. I sit beside her; as a suburbanite who relies on my car and the occasional commuter train, it is my first time on a city transit bus in years. We pull out, past working-class row houses, a Christian lawn ornament store, a farmers’ market, an abandoned candy factory, Asian grocers. Short hair, just beginning to gray, fans out from underneath Claude’s driver’s cap. Beth announces that he’s forty-two, with a birthday coming soon. He laughs as she offers the exact date and then explains how he likes to spend his birthdays. She remembers everything, he says.

He asks if she’ll change into her flip-flops should this chilly day become as balmy as the forecast predicts. "If iz over forty, she replies, you know I will. He tells me they jam with her radio when the bus is empty. Real loud, she adds. They recall some trouble with a rider months ago. She was mean," Beth says indignantly. Claude agrees, and recounts the altercation, in which a passenger vehemently challenged his knowledge of upcoming stops, and which culminated, after the malcontent had finally exited, in Claude’s relief that Beth was sharing the ride—he had someone who could sigh along with him.

Moments later, we pass Beth’s boyfriend on his bicycle. Also an adult with mental retardation, Jesse has paused at a crosswalk, his maple brown face pointing straight ahead, his blind left eye looking milky in the light, sun glinting off the helmet Beth long ago convinced him to wear. The decade they’ve been together is more than a fourth of their lives. Claude picks up his intercom mike and calls out, Hello, Jesse! Jesse looks over. We twist around in our seats, and his mustached face brightens as we wave.

All day, when we mount Jacob’s bus, Estella’s, Rodolpho’s, one driver after another greets Beth heartily. They tell me she helps out: reminds them where to turn on runs they haven’t driven for a while, teaches them the Top Ten songs on the radio, keeps them abreast of schedule and personnel changes, and visits them in the hospital when they’re sick. She assists her fellow passengers as well, answering questions about how to reach their destinations, sharing their consternation when the bus halts for double-parked delivery trucks, carrying their third bag of groceries to the curb.

In return, many riders smile hello to her and ask how she’s doing; many drivers are hospitable, even affectionate. Jacob asks if she has gotten a new winter coat and if the homeless woman who clashed with her last month has bothered her again. Jack slips her money for soda. Bert squawks out songs, making her laugh at his jaggedy tunes.

Not everyone is nice. Some drivers, I learn, call her The Pest. When they see Beth at a stop ahead, they cruise right by, gaze glued to the road. Some riders warn them, crying out, Keep going! when they spy her waiting on the curb, and, if she climbs on, they bleat in her face, Shut up! Go home!

"I don’t care," she says and shrugs. When we were growing up, I saw a twinge of anguish on her face whenever kids called her poisonous names, and sometimes the hurt took hours to fade. Now I see that, surrounded by friends, she regains her composure quickly.

That’s not all that has changed, I discover. Beth, once a willful child who, like many willful children, felt most secure at home, has grown into an extravagantly social and nonconforming adult, one who creates camaraderie out of bus timetables, refuses to trouble herself when people look askance at her—and, in a buoyant refutation of the notion that mental retardation equals sluggishness, zips about jauntily to her own inner beat. My sister (my sister! I boast to myself) maneuvers through the world with the confidence of a museum curator walking approvingly through her galleries, and, far from bemoaning her otherness, she exults in it.

That afternoon, as I step to the curb and wave goodbye to her through the bus window, I am pierced by a sudden memory, minted only this morning. She was sailing her short, stout body across the street toward McDonald’s, and I was scrambling behind. In the predawn moonlight, as she chattered on about our labyrinthine itinerary, well aware that there are few if any other people in this world devoted to a calling of bell cords and exhaust fumes, she spontaneously threw back her head and trumpeted, "I’m diffrent! I’m diffrent!" as if she were hurling a challenge with all her might beyond the limits of the sky.

In the course of my life, cars and trains and jets have whisked me to wherever I wanted to go, and I was going places, I thought; I was racing my way to becoming a Somebody. A Somebody who would live a Big Life. What that meant exactly, I wasn’t sure. I just knew that I longed to escape the restrictions of what I saw as a small life: friends and a family and a safe, unobjectionable job that would pay me a passably adequate income. Although this package encompassed just the kind of existence many people I knew were utterly content with, I wanted something more.

Then, in the winter of my thirty-ninth year, I boarded a bus with my sister and discovered that I wanted broader and deeper rewards than those I would find in the Big Life.

At the time, I thought I had my life under control. In addition to having published several books, I was teaching college as well as holding classes for private students, writing free-lance commentary for the Philadelphia Inquirer, and hosting events at a bookstore. I adored everything I did, which is more than many of my acquaintances could say.

But, though I wouldn’t confess it to myself, I worked all the time. Seven days a week, from the minute I threw off the covers at seven A.M. until I disintegrated back inside them at one A.M., I leapt like a hare through my schedule: Write article → Grade student papers → Interview newspaper subject → Book author for store signing → Teach private class → Take notes for next novel → Eat → Crash.

My life, I told myself, bore little resemblance to the lives of workers in corporate America. After all, I made my own schedule and wore comfy leggings and sweaters at my desk, saving the A-line skirts and blazers and lipstick until I drove out to class or the bookstore. To unwind, I took vigorous walks whenever I pleased, keeping my five-foot build lean and fit. But who was I kidding? I was like most of my peers: hyperbusy, hypercritical, hyperventilating.

As a result, I bricked in all the spaces in my week when I might have seen friends, and so it followed that I lost many of them. I lost my opportunity to indulge in almost all leisure activities as well: no movies or plays, and, though I continued to purchase new novels and routinely carted home any intriguing texts I found on the Take Me shelf at school, dust settled on the pages like snow, as I had time to read few books beyond those I needed for my work. But perhaps the greatest forfeit was love. I’d had a few awkward dinner dates in the four years since my longtime live-in romance had come to a mutually tearful and reluctant end, and even those strained opportunities had petered out. Alone in my apartment in the Philadelphia suburbs, dining at my desk most nights, I occasionally browsed the personal ads. But then I’d open my datebook, remember that I had no time to meet for coffee, and turn back to my work.

This had not always been me. Until I found myself single, my evenings had been filled with dinner parties and art openings and reading groups and two-hour phone calls with my girlfriends. That is, when my nights weren’t already occupied by relaxed conversations on the sofa with my boyfriend, Sam, where we’d go on about books and politics and the seductive lure of the Big Life, our exchanges interrupted only when he’d get up to flip through his voluminous record collection, then set the needle on recordings by, maybe, Miles Davis, or the English folk musician Nick Drake. I don’t know when things stopped working for us; I just know that when he asked me to marry him I could not bring myself to make the commitment. Finally, in a blur of grief and regret, convinced I should let him move on with his life, I left. I took only my necessities—computer, desk, and clothes—and camped out in one cheap rented room after another while I tried to make sense of my life, and of what seemed to be a stony heart. It didn’t help that for years I had subsisted on Sam’s architect’s salary, plus my writing jobs, and now, in one of those unnerving coincidences of fate, they suddenly dried up. Those first few months on my own, I was so lonely and broke that my stomach would seize up during the night and I’d wake on my air mattress, clinging to a pillow, and lie awake until morning. During the day, catching my reflection in my computer screen and seeing only failure, I’d feel my face tighten with terror.

Finally, I accepted a job at a bookstore, and, as luck would have it, started publishing at the Philadelphia Inquirer. Then, marveling at the dollar signs sprouting in my check register and discovering that with each newspaper column and wave of bookstore applause I felt myself on my way to the Big Life, I accepted positions teaching as well. I rented an apartment and purchased a bona fide bed, but did not acquire a stereo or TV, as I hadn’t missed either enough to replace it. And I worked. I worked until I was so exhausted I fell back asleep easily when I woke during the night. I worked until I forgot I was lonely, until I could not conceive of any other existence.

I hadn’t seen Beth in a couple of years. We stayed in touch through letters; once a week I’d scratch out a card, and in return she’d cascade fifteen back. Her letters consisted of two or three multicapitalized sentences sprawling down the page, sprinkled with periods, which she’d then fold into envelopes flamboyantly tattooed with stickers and addressed in fall-off-the-paper print. I relished finding these treats populating my mailbox, whole colonies arriving in a single day. In Magic Marker scrawl, they gossiped about our younger brother (I aM Glad that. Max got a new rED car. when he Came with his kids. good) and older sister (Laura sent Me. a gift Thing for WAlmart), educated me about the latest Top Ten (Do you. like In Sinks I want you back. I do), and revised my knowledge of Jesse’s athletic achievements (Jesse did do that big race. WoW). Best of all, they climaxed in a spunky declaration that defied the world’s cliché of her as an uncomplicated half-wit, signed as they were, Cool Beth.

But when I phoned her occasionally, the conversations were clumsy and joyless. She never volunteered information about herself, and when I divulged meager scraps about myself, she made no effort to respond. This combination of guardedness and lack of interest annoyed me, as it did the rest of the family, and like them, I didn’t know what to say or ask. After Hello, our dialogue rapidly disintegrated. Finally, resorting to the I’m-the-older-sister-you’re-the-little-sister pattern I knew so well, I’d offer blandly, Did you hear about the Ninja Turtle mug giveaway at that fast food place? How was your talk with Mom? These queries would allow us to trudge ahead for a few minutes, Beth scattering monosyllabic crumbs in my direction, me telling myself, Okay, it’s boring, but it’s brief. When we got off the phone, my shoulders would be as rigid as if I’d just marched into combat.

Sometimes she’d call collect. "Iz my birfday. Can you visit? Or Iz nice out. Come over." But she lived hours away, in a city I didn’t know my way around; I’d already been long out of the house before she’d moved to the area with our father. Endure both geographic confusion and labored communication? Sorry, I’d say. I can’t.

Besides, she did this . . . bus thing, and, like the rest of our family, I found it difficult to accept. Some days its sheer oddness baffled me; other days I was disheartened by her choosing to master bus routes over sticking with something productive like a job. I had long embraced eccentrics in novels and cheered on iconoclasts I encountered in newspaper stories, yet I was too dismayed by Beth’s peculiar devotion to the buses to be willing to acquaint myself with her life. In fact, I had rarely even admitted it to friends and colleagues who, once they learned that one of the three siblings I’d mentioned had mental retardation, seldom asked anything besides whether she had Down syndrome (no) and what her mental age might be. Mental age. It was as if they thought that a person’s daily passions—and literacy skills, emotional maturity, fashion preferences, musical tastes, hygiene habits, verbal abilities, social shrewdness, romantic longings, and common sense—could all fit neatly into a single box topped, like a child’s birthday cake, with a wax 7, or 13, or 3. When I was unable to supply her mental age, they’d ask whom she lived with, even if I’d already told them she lived on her own. It would become clear to me then that their understanding of mental retardation had never moved beyond the stereotype of the grinning, angelic child. This exchange was so routine, and had been for so many years, that my dismay had long ago dissipated into acceptance, and with that had come the realization that I would always hover between two worlds, with mental retardation over here, normal cognitive functioning over there, and that I would have to convey information from one to the other, never quite belonging to either. My friends seemed relieved to learn that people with mental retardation are individuals. I was relieved to omit just what an individual Beth happened to be.

In letters or on the phone with Beth, I sought to ignore her deepening allegiance to the buses by focusing on practical matters. Has KFC had any openings since they laid you off a few years ago? Would you like help obtaining a library card? She communicated her resentment with sullen I don’t knows or a silence as deep as sleep.

So for years I essentially let her become a stranger. Though sometimes at night, when I was at my desk and happened to glance outside and spy the moon saluting from above the treetops, I’d remember how fascinated she’d been by it when we were kids. Sitting at my desk, I’d shake my gaze away from the window, but moonlight would still illuminate my papers. Her stickered letters glared up at me, as the guilt of being a bad sister once again reared up inside me.

Then one winter morning when Beth was thirty-eight and I was thirty-nine, and I was too exhausted from my daily triathlon to come up with an idea for the newspaper, I mentioned to an editor that I wanted to visit Beth for the holidays but was, as always, perplexed about how to negotiate the dilemma of her buses. Say what? he said, and, embarrassed, I explained. How interesting, he said. Take a day to ride with her, and write it up for your next piece.

I did ride with her, and over that day I was touched by the bus drivers’ compassion, saddened and sickened by how many people saw Beth simply as a nuisance, and awed by how someone historically exiled to society’s Siberia not only survived, but thrived. Indeed, the Beth I remembered from years ago had a heavy, ungainly gait; the Beth I saw now was not only nimble-footed, but her demeanor was exuberant and self-assured. I was aware of my earlier objections to her bus riding, but they began to feel inexcusably feeble.

I wrote the article, and as soon as it appeared it created a stir. Postcards and e-mails arrived from strangers; acquaintances flagged me down in the bookstore to shake my hand. Beth was tickled: people were paying attention to her and her beloved drivers. The piece was picked up by papers all over the country, generating a tide of enthusiasm. I kept calling to tell her, and we started talking more. Her letters, which soon poured into my mailbox in even greater numbers, felt all the more special. I finally knew what to ask, and now she wanted to answer.

Yet I was too busy to dwell upon the pleasure the article’s success gave me. Actually, I was too busy to let myself feel much of anything: One day when throwing clothes into a suitcase during the ten minutes I had allotted to pack for a business trip, I glanced outside. A neighboring family was playing together on that mild winter afternoon. There, beside a tree swing, stood the dad—not a Big Person with a Big Life, but an unassuming person with a richly quiet life—as each of his four children lined up for a push. I started to smile as I zipped up my bag, but discovered to my horror that the muscles in my face no longer seemed to work. That night, I lay in my hotel bed in a chill, suddenly unable to keep my loneliness stuffed inside its cage. What if my breathless daily grinds led to only more breathless daily grinds? What if I closed the door forever on human connection—never again shared a relaxed afternoon laughing with a friend, forgetting to look at my watch? Or spent a day, a whole day, simply enjoying the company of a man? What if work was it?

A few days later, hurrying through my mail, I came upon an envelope from one of the agencies that works with Beth. I opened it to find an invitation to attend something called her annual Plan of Care review.

I held up the letter to reread it and slowly comprehended its significance: Beth had asked that I be included. In the eleven years since she had left home, this meeting—which I’d been vaguely aware of through the report that gets mailed to each family member, and which seemed to cover matters like finances and health—had been attended only by her aides, not family. But clearly, my ride on the buses had meant a lot more to her than just a few words in a newspaper.

I flipped open my datebook. The January day was not ideal, but if I canceled this and rearranged that, I could manage it. I called to RSVP: Yes.

On a brisk January afternoon, while last week’s snow still dots the streets, the mirrored elevator zooms me toward the eighth floor of the agency’s skyscraper. As the numbers light up—4, 5—I wonder what to expect. The elevator feels leathery and professional, a part of my world, and with a catch in my throat that falls somewhere between caution and excitement, I know that as soon as I emerge, I’ll be in a land of rules and people I don’t know—6, 7—and will feel as cloddish and bewildered as Alice emerging from the far end of the rabbit hole.

The doors open, and Beth is standing before me in the marble corridor.

At four feet ten, with unzipped regal purple coat, buttercup yellow pants, and an oversized orange marmalade Eeyore T-shirt, she cuts a grand Day-Glo figure in this corporate environment. Although Beth looks like the rest of our family—brown eyes, curved nose, brunette ringlets, squirrelly cheeks—you immediately know when you first see her that she is different in some way, given her unique fashion sense and her loud and spirited manner. Hi, she says.

I set my briefcase down to give her a hug. I feel as if I tower over her as I lean in close, and my tailored black overcoat, burgundy skirt, and black velvet blazer seem not understated as much as entirely underdressed. We wrap our arms around each other, though I know it will be fast; Beth doesn’t care to be touched, she has admitted to me, but hugs me because I like to.

Still, her squeeze, quick though it is, is just long enough for me to uncork a sudden memory: we are three and four years old, admiring a spider web under the house in the shadows of the lattice, and I am tickling her legs in the grass-scented shade. Eventually I grew into my life, smoothing down all the quirks that would make me stand out, while Beth nurtured all the quirks that ultimately produced this imp in my arms. How had we come to evolve as we did, I wonder, as she pulls away from me. We were born into the same family, we relished the same simple moments, and, until a certain sleeting February afternoon when we were teenagers, we shared the same major losses and joys. Yet we turned out so differently. Is it just her mental retardation that made her who she is, or did her experiences after, or even before, that February day somehow spin her personality in this direction? Memories flicker through my mind as I try to trace the thread back to the beginnings of my irrepressible sister.

"Down here, she says, wheeling about and hastening along a corridor of office doors, her feet turned out in her customary divining-rod style. I wore pants today because iz thirty-two, but iz supposed to be forty later so I’m gonna change to shorts."

Shorts. Always shorts, and often her trademark violet sandals or blueberry flip-flops, as long as the temperature is above forty. I think it has to do with vanity. Not that she feels she’s got Rockette legs, nor does she even have a full-length mirror in her apartment. And, though she draws attention to her sandaled feet by painting each toenail a different fluorescent color, glamour isn’t the point either. It just seems imperative to Beth to show that she can brave the cold when the rest of us bundle up.

She patters into a conference room. Around the rectangular table sit three women: redheaded Vera, blond Amber, brunette Olivia. The room is not large, and Vera and Amber, in their casual sweaters and pants, have set up at one end of the table, while Olivia, arrayed in a navy blue pants suit, occupies the other.

Have a seat, Olivia says to me after I shake their hands. I realize that although Beth has peppered her letters with their names, I know nothing about what each one does for her or, for that matter, anything about the system at all. I settle into a cushioned chair across from Beth.

Let’s start with finances, Olivia says. She is a pretty, tall woman in her early forties, with an alabaster complexion and raven hair that she wears long, her bangs framing a pair of extraordinary eyes. They’re turquoise, I see, as she pages through her paperwork. Navajo barrettes, studded with stones the same color as her irises, clip back her hair.

Okay, finances, Vera says, lifting up a paper. She’s somewhat older, petite, pacific, bearing the aura of a no-nonsense grandmother. She speaks slowly, her words shaped by a subtle Spanish accent. Beth currently receives $527.40 from S.S.I., she reads from her page.

What does that stand for? I ask. Social Security?

"Iz my check evry month," Beth says.

It stands for Supplemental Security Income, Amber explains. Perky and gum-chewing, blond hair swept back from her face, she’s the youngest of the three by at least a decade.

Olivia, friendly and easygoing, who seems to be running the meeting, elaborates. S.S.I.’s a Social Security program that gives monthly benefits to people sixty-five or older, or blind, or who have a disability and can’t work, provided they don’t own much or have a lot of income.

Vera goes on, detailing how much of the S.S.I. money goes to Beth’s subsidized apartment, groceries, phone, cable, burial fund, spending money, and bus pass—the most important thing.

It sure iz, Beth says. "You know it."

I suddenly remember that Vera visits Beth in her apartment a few times a week; she must be the person whom the drivers call Beth’s aide.

Reviews for Riding the Bus with My Sister

[berly_4 · Rating: 4 out of 5 stars]

From the publisher: Beth is a spirited woman with mental retardation who spends nearly every day riding the buses in her Pennsylvania city. The drivers, a lively group, are her mentors; her fellow passengers are her community. Beth, who lives independently and has a boyfriend, is a joyful, endearing, and feisty individual. Her single sister, Rachel, a writer and professor, masks her emotional isolation and loneliness behind her hyperbusy schedule. When Beth asks Rachel to accompany her on the buses for one year, they take a transcendent journey that changes Rachel's life in incredible ways, leads her to accept her sister at long last--and teaches her to slow down and enjoy the ride.I thought this was a poignant story and the author learned at least as much about herself as she did about her sister. The bus drivers were interesting individuals, each with their own backstory and take on life. Overall, a pretty good read!

[cdwilson27 · Rating: 4 out of 5 stars]

This is the true story of Rachel, a young adult professional taking time to slow down and immerse herself in the world of her sister, a developmentally disabled adult. Like many with non-visible disabilities, Beth has a cadre of social service providers who meet with her regularly to assess and try to meet her needs. When Rachel attends one of these meetings, she becomes aware of how Beth and her case managers keep her on track. Rachel doesn't understand many of Beth's quirks, but over time she begins to appreciate them for themselves. Beth's life is Beth's life, and Rachel makes conscious choices to share it.

[lahochstetler · Rating: 3 out of 5 stars]

I expected to like this book much better than I did. This is the story of Rachel Simon and her developmentally-disabled sister, Beth. Beth spends her days riding city transit buses. In an effort to become closer to her sister Rachel decides to spend time with her, riding the bus. Doing so forces Rachel to come to terms with all of her complicated emotions regarding her sister and the rest of the family. The Simon family certainly has a troubled past. The girls were abandoned by their mother. Really, though, the book is mostly about the adult relationship between the two. And at the end of the day, I didn't find that relationship as interesting as I expected to. Basically, Rachel discovers that having intellectual disabilities didn't prevent her sister from having a full range of feelings and behaviors. A big part of this book seems to be Rachel coming to terms with the fact that it's okay if her relationship with Beth is not all sunshine and rainbows. More interesting was Rachel's effort to come to terms with the philosophy of self-determination, which guides the care of Beth and others like her. Beth is allowed to make her own decisions, even if they aren't very good ones. The ethical issues surrounding this are interesting, even if they aren't the main purpose of this book. And that ended up being the main flaw of the book for me. The issues became more interesting than the people living them.

[mom2acat · Rating: 5 out of 5 stars]

This memoir follows one year in the lives of Rachel and her developmentally disabled sister Beth, (or as she calls herself, Cool Beth.) Beth spends hers days riding the city buses, and in an effort to get closer to her sister and understand her better, Rachel agrees to spend a year riding the buses with Beth (one or two days per week.)As she rides the buses with Beth, and gets to know the drivers, she discovers during the year she is learning as much about herself as she is about her sister, and that deep down, the so called "normal" people are not that much different from people like Beth. This book also looks at the way society treats people like Beth; although she has many friends among the drivers, some are less tolerate and not very kind to Beth, and the other passengers are not always nice to her either.But this book is not just about riding buses; the author also looks back to their childhood and how certain events shaped them both, for better or worse.I really enjoyed this book; the author was admirable of her sister, but also honest about the frustrations with dealing with her. I was kind of sad when this book came to an end; I liked Rachel and Cool Beth and I enjoyed being a part of their world for a little while. I also enjoyed the stories of the drivers and how they related to Beth.I could also relate to Rachel; I too have a sister who is intellectually disabled. She is not as loud or as flamboyant as Beth, but I could especially relate to the times when Rachel felt frustrated with her.This book was also made into a movie a few years ago by Hallmark, starring Rosie O'Donnell and Andie McDowel.

[lkernagh · Rating: 4 out of 5 stars]

Winner of the 2003 American Book Award, Riding the Bus With My Sister is a memoir that grew out of a request made by Beth, Rachel's sister. Beth is a woman in her late 30's, born with mental disabilities and spends her days - and schedules her life around - riding the buses in her Pennsylvania city. What started out as a one day adventure for Rachel to write an article for a newspaper about Beth's bus riding became, at Beth's request, a 12 month journey, a few days a month, where Rachel would put her busy -and empty - life schedule on hold to visit Beth and ride the buses with her. Over the course of that year, Rachel gets to know: the bus drivers that come to represent Beth's life coaches; Beth's care workers/aides that are part of the system that supports Beth's independent living as a disabled individual; and Beth's boyfriend, Jesse. Seeing the world through Beth's eyes is a challenging and at times frustrating experience for Rachel who is also struggling to find meaning in her own life. Interspersed between the chapters of this year long journey are chapters written in italicizes - flashbacks to Rachel and Beth's childhood years. For me, the flashbacks help provide context for the relationship Beth has with her family but I preferred the chapters of the conversations with the bus drivers and Rachel's own journey of self realization. The information Rachel gleans from her research on "mental age", mental disabilities and self-determination are basic backgrounders for anyone new to this information. Rachel's growing realization of Beth's life - that she has a network of friends and a community of support - serves a greater purpose: to try and draw attention to and remove some of the existing stereotypes of individuals with what are classified as 'mild' mental disabilities.An interesting and different type of memoir containing some good life lessons that has been sitting on my TBR bookcase since September 2009. Overall, I am glad I pulled this one off the shelf and finally got around to reading it.

[homeschoolmimzi · Rating: 4 out of 5 stars]

I liked this book a lot. I enjoy reading people's thoughts about something life changing. I found it to be honest, endearing and interesting to read.

[heidi.donner · Rating: 4 out of 5 stars]

A great memoir documenting a year in the author's life as she tags along with her sister who is mentally challenged. This would be a good book to introduce students to the differences they all have and to bring up topics that may be hard to cover. Good for students above second grade.

[prescottkris · Rating: 4 out of 5 stars]

I remember when this movie came out wanting to see it, unfortunatly I didn't get to watch it. Reading the book was good though. Still hunting for the movie.

[tjsjohanna_1 · Rating: 4 out of 5 stars]

This is a memoir that reads like a novel - in a good way. Ms. Simon has interwoven her year riding the bus with her sister, who is mentally disabled, with memories of her past and her family. Both narratives serve to enrich and shed light on each other. This is as much a book about Ms. Simon's own growth as it is about her sister, Beth. And really, isn't that what people are in the end - who they are because of who they spend time with, who they live with and around. A very rewarding read.

[touchthesky_1 · Rating: 3 out of 5 stars]

I enjoyed the flashbacks, that were written in italics, better than the *current* story. The book is full of insight and enlightening moments that should be shared by all. However, I felt that the story was more about Rachel than Beth. Rachel's writing probably didn't have the same affect as on me, since I have family members with cognitive disabilities...but not a sibling. But, Rachel informs us about many life lessons that all of us should learn. A very interesting read.

[debnance_1 · Rating: 4 out of 5 stars]

What a great bus ride! Did Beth ever turn the tables on Rachel! Rachel agrees to meet up with Beth every month and ride the buses with her, something Beth loves to do. Beth is mentally disabled and Rachel feels she will be helping her sister. And she does, in a way. But, more, Rachel learns from Beth and from Beth's mentors, the bus drivers, the really important things in life that Beth knows and Rachel has always missed.

[readerspeak_1 · Rating: 4 out of 5 stars]

When I first heard of this book, I decided I didn't want to read it. What could the story really be about? One afternoon I picked it up and couldn't stop reading. It pulled me in right away. It was neat to see how the author learned more and more about her sister's abilities and learned to see her for who she is, not who she could be. And it was also brutally sad to find out more about their history growing up, how their mother fought to treat everyone equally until she couldn't cope any more. I do recommend this book to anyone who is a mother or sister, and especially anyone who has a family member with a mental disability.

[capfox · Rating: 4 out of 5 stars]

One of the worst kinds of literature, to my mind, are the ones where your main character is a busy person, trying to succeed, doing their best to make the most of their lives, and then they are exposed to wise old sage / intelligent animal / precocious child / disabled veteran. And then they learn the true value of life, and hurrah, hurrah, their minds are forever changed for the better, and they love the world. Urgh, the trite pastiness of it. And then those books end up super popular, and you hear about them everywhere: this will change your life! You just sigh internally. I picked up this book because my mom recommended it, and she usually has good taste, but I look at the blurbs on the cover ("it touched my soul" - Rosie O'Donnell) and I read the first twenty pages, and I worry.But - and thankfully, there's a but - the story doesn't pan out that way. This memoir details the year that Rachel Simon spent with her sister with mild mental retardation around on the buses in her sister's small Pennsylvania city. A few years before the time detailed in the book, Beth, her sister, took up riding around the buses of the town all day, chatting with the drivers and learning all the routes and the timetables, to the degree where she serves as a backup resource for new employees, getting access to the driver's room, etc. Not all of the drivers take to her, but enough do, and she feels as if she's found her place.Rachel had not been close with her sister for some time, but when Beth reached out to her and invited her to spend a year riding with the buses with her, she decided to take time out of her schedule to take up the offer, alongside her classes and writing. The memoir goes along month by month, for the days she's out there with her sister, with the chapters for each month generally including some riding around with a particular driver on the bus, each with different views on the world, jocular, heavy, contemplative, religious, trying to help Beth, or not; and then also some time off the bus, and then finally about the history of the Simon family and dealing with Beth through the years.It's actually a very easy read, and the different profiles of the bus drivers, intelligent, thoughtful folk (for the ones that get profiled; Simon notes they're not all like that), add some nice variety. But the most interesting part of it is Simon's coming to grapple with her sister and her life, and what it means for her to be a good sister, and a more open person. Simon turned away from her sister some when she was growing up, but she didn't even really know what it meant for people to have the sort of disability her sister has. She hadn't done the research on it until during the year in question, and she hadn't tried to understand her sister's place in life, why she wanted to ride the buses, the level of self-determination she has.The overall trend in care for those with mental retardation has been to give them more control over their lives, and the book shows both the plusses and minuses of this system - Beth makes her decision about how to make her life fulfilling, but she makes her own bad decisions, too, and it's hard for her sister to watch. But she does get a lot more respect for her sister, and eventually, the feeling becomes more mutual. Beth's fiercely independent, but they do manage to make it work out between them, so that they each have their place with the other.I actually did come to enjoy this book after the beginning. It's a more complex story, written clearly and with enough emotion to become invested. I learned much about the toughness of the situation, the complexity of living with someone with a real cognitive disability, but that they're really still a complete, full person. Realizing that is hard even when you're in the situation; even with my mom being a special ed teacher, I have a hard time remembering this sometimes.Anyway, it is an interesting, informative, and, yes, heart-warming read. But not in that bad way. In a better one.

[kathysoper · Rating: 5 out of 5 stars]

Scholarly, emotionally stunted older sister spends a year getting to know her mentally disabled sibling through shared journeys on the public transit system. Beautiful writing, beautiful meaning.

[caitlinef_1 · Rating: 2 out of 5 stars]

I found this memoir captivating and heartbreaking. The author writes of her experiences riding the public bus system all day for a year, as a gift to her mentally ill sister. Rachel tries to deal with her sister Beth's impatient, rude, and stubborn nature, in an attempt to learn about the illness, and about Beth. Along this journey, Rachel is faced with an inner struggle, as she can not understand how her sister can be so open to people, while she buries herself in work and hides from forming real relationships. Through many fights and misunderstandings, the two sisters eventually learn to accept each other for who they really are, despite their differences. This memoir has a good message, however it is hard to get into, and can be dull at times. Rachel comes off as self- centered and annoying in several cases, but the story is worth reading if you have a sister.

[hhaddad1 · Rating: 4 out of 5 stars]

This memoir is about Rachel and her sister Beth, who has an intellectual disability. Beth spends her time riding the buses around their home town. When Rachel and Beth grow apart, Beth asks Rachel to ride the buses with her everyday for a year. To her own amazement, Rachel actually becomes closer with Beth during this time and with the people in Beth's life. This memoir narrows in on the struggles and rewards that having a family member with a disability brings.

[howifeelaboutbooks · Rating: 5 out of 5 stars]

A great memoir documenting a year in the author's life as she tags along with her sister. Beth, the sister, is a mentally handicapped adult who is functioning enough to live on her own and be employed. However, instead of holding a job, Beth prefers to ride the city buses all day, learning all of the routes and schedules, and befriending drivers and passengers. Simon finds her life changed as she travels in circles with her sister. There are some really heartfelt emotional scenes that will open your eyes towards injustice as well as the beauty in life. There is also a surplus of honesty - Simon never glosses over how it feels to cope with a handicapped family member, recounting fights she picks with her sister, anger she feels, and the guilt that results from both. It's an amazing book, the second I've read by the author, and I'm eager to read more.

[judiex · Rating: 5 out of 5 stars]

Rachel and Beth Simon, born eleven months apart, were the middle children of a family with four children. From the time of her birth, their parents knew Beth was different and, after seeking a lot of medical attention, learned that she had mild mental retardation. They raised her to do as much as she could while letting her siblings know that they were not going to hide her and that each of them would also have responsibility for her.That was easier said than done. The family was seriously broken by divorce and Beth was not easy to help: She knew what she wanted and insisted that everything be done her way, even if it wasn’t the best way for her. The mental health professionals were aiming to provide their clients with the right to make their own decisions. Beth dressed in very colorful, casual clothing that was inappropriate to the circumstances and the weather and was very loud and opinionated. She would always stand out in a group..When the book opens, Beth and Rachel, in their late thirties, hadn’t seen each other for a few years. Once a week Rachel would send a card and Beth would send Rachel several notes in return. Rachel agreed to visit Beth every month and learn more about both Beth and Beth’s life. “Who was Beth? How did they grow apart?” She learns more than she expected. Beth lived independently in a subsidized apartment and had no interest in getting a job. She had been fired from previous ones, often deliberately sabotaging her employment because she didn’t like the job or other things were more important. She. spent her entire day riding buses. “Within weeks [of moving to her apartment] she could navigate anywhere within a ten-mile radius, and, by studying the shifting constellations of characters and the schedules posted weekly in the bus terminal, she could calculate who would be at precisely with intersection at any moment of the day.” She staked out friendships all over the city, weaving her own traveling community.” Beth was very much aware of and accepting of the people she saw except if they were mean to her. As Rachel and Beth were walking down the street one day, Rachel saw a scruffy looking man “I avert my eyes, figuring as always, that it’s better to ignore homeless people than to get a request for a handout.. As we pass him, Beth says, “Hi, John.” He looks directly at her and nods back. A moment beyond, I ask, “You know him?” “Yeah he lives on the street. He’s nice.” Rachel realized that Beth knew all these people and, while she turned away, ready to dismiss them, Beth told her about each of them. Several years ago, one of my daughters who worked with homeless people told me the same thing. Instead of ignoring them, look at them, smile, and say “Hello.” That little bit of respect is sometimes all they seek. What happens to street people when businesses refuse to let them use their toilets? Where can they go?RIDING THE BUS WITH MY SISTER opens the window of bus drivers and their world. Flashbacks reveal family history.Many people and drivers were friendly and helpful. They exchanged gifts and visited each other in the hospital. (The book includes recipes from Jack for Chicken Pot Pie, Red Beet Eggs and Chocolate Mayonnaise Cake.)However, some drivers...call her ‘The Pest.’ When they see Beth at a stop ahead, they cruise right by, gaze glued to the road. Some riders warn them, crying out ‘Keep going!’ whey they spy her waiting on the curb, and, if she climbs on, they bleat in her face, ‘Shut up! Go home!’”Rachel realized, “I had long since grasped that the qualifications for a bus driver can and often must extend well beyond operations skills. But I had not realized that drivers might also be called upon to assume the role, at a moment’s notice, of emergency caregiver – or bereavement counselor, confidante, inspirational speaker, and all-around healer of life’s slings and arrows.” She asked one, “So many of you drivers...seem to be philosophers, anthropologists, spiritual guides, commentators on what it means to be human, and how to be human a little better.” The response: “What do you do when you’re a bus driver? You spend time with people and you sit and you think....I think a lot in here about life.”Tim wanted to be an archeologist. “Looking back in time was very exciting to me. But looking forward is more challenging – nothing unfolds as you anticipate, and it’s the small things, not the huge geologic shifts, than make or break you.”Rodolpho: had great plans: He built a house for himself and his wife, wanted to make lots of money, got a Dodge Ram, took flying lessons. He worked so hard that he was never home. His wife divorced him and he ran out of money. Then he met another woman. “Now it’s making Sabrina smile. That’s my idea of success now: not thinking of what I can get, but thinking of what I can give.”Estella told her: “They’re my customers, and that means something to me. I try to make them feel at home before they get home.”When one of the drivers invited Rachel and Beth to join him and his family at the beach, neither Beth nor Rachel want to get a bathing suit. The driver responded: “I’m asking you to loosen up. Writers need to experience what others experience to get a true understanding of life, correct? I want to give you more than a glimpse of fun – I ant you to feel it. Don’t worry about how you look, none of us are beauties.”Many of these situations are familiar to people who are regular bus riders. Others never even consider the people they see informally every day. RIDING THE BUS WITH MY SISTER opens our eyes to that invisible world and all the treasures it has to offer. Rachel learned a lot about Beth and her world as well as about herself. While she got very frustrated at times, she saw how other peoples’ reactions helped her understand her own and recognized some very positive aspects of Beth.RIDING THE BUS WITH MY SISTER was well-written and honest. I cared about the characters. It was made into a movie with Rosie O’Donnell doing a spot-on job portraying Beth. The book, though, is much better. It was reprinted in 2013 with 50 additional pages of essays from Beth and Rachel. Unfortunately, the copy I read is the earlier version.

[hobbitprincess · Rating: 4 out of 5 stars]

For the most part, I found this book to be interesting, if a little slow in places. I worked in the special education world until very recently, with a population that is much more severely affected than Beth was. The young adults that I taught were nonverbal and completely unable to care for themselves or live independently. All through the book, I thought about how the parents of my students would have loved having their child as independent as Beth. I understood a lot of what was happening and what Rachel was learning. I do have some issues with self-advocation, but that is nothing that is geared towards the author or this book. I understand that it is law. It's hard to have laws that apply equally to such a diverse group of individuals. I have heard more than one parent share a bad experience that involves the laws Rachel learned about. I would recommend any reader to understand that there are adults out there that you never see, who have to have constant care. They are entitled to a free education, and that is where I was involved. I learned that a lot of people think of those with Downs and those individuals who compete in Special Olympics when they think of self-contained special education. Please have a heart and think of those who have severe and profound intellectual disabilities. Those families need all the love and support that your communities can give them.

[whisper1_1 · Rating: 5 out of 5 stars]

Riding the Bus With My Sister by Rachel SimonNow an adult, Rachel has always been embarrassed by her "mildly retarded" (her words) sister. Almost twins, they laugh at the fact that there is one month of the year when they are the same age. Their mother was a strong force in insisting Beth be treated equally/fairly.Beth made a wish to Rachel. She rides the buses all day long throughout her Pennsylvania city. She asks Rachel for a year of her time to ride the buses with Beth to see the people and world that she sees.Rachel overlooks the loud diatribes that Beth rattles throughout the bus so that all can hear. Beth is treated with respect by many of the drivers, a few are tired of her constant talking and the fact that she seems to pick particular male bus drivers as possible partners.As the year ends, Rachel comes away with tremendous sense of wonderment and pride at Beth's ability to make friends, to remember what they like, and each birthday give them a small present. She notices Beth can sometimes let nasty comments wash away, and then, there are times that Beth becomes VERY angry and over and over again talks about revenge.This is one of my favorite books thus far!

[winterfox-392140 · Rating: 4 out of 5 stars]

One of the worst kinds of literature, to my mind, are the ones where your main character is a busy person, trying to succeed, doing their best to make the most of their lives, and then they are exposed to wise old sage / intelligent animal / precocious child / disabled veteran. And then they learn the true value of life, and hurrah, hurrah, their minds are forever changed for the better, and they love the world. Urgh, the trite pastiness of it. And then those books end up super popular, and you hear about them everywhere: this will change your life! You just sigh internally. I picked up this book because my mom recommended it, and she usually has good taste, but I look at the blurbs on the cover ("it touched my soul" - Rosie O'Donnell) and I read the first twenty pages, and I worry.But - and thankfully, there's a but - the story doesn't pan out that way. This memoir details the year that Rachel Simon spent with her sister with mild mental retardation around on the buses in her sister's small Pennsylvania city. A few years before the time detailed in the book, Beth, her sister, took up riding around the buses of the town all day, chatting with the drivers and learning all the routes and the timetables, to the degree where she serves as a backup resource for new employees, getting access to the driver's room, etc. Not all of the drivers take to her, but enough do, and she feels as if she's found her place.Rachel had not been close with her sister for some time, but when Beth reached out to her and invited her to spend a year riding with the buses with her, she decided to take time out of her schedule to take up the offer, alongside her classes and writing. The memoir goes along month by month, for the days she's out there with her sister, with the chapters for each month generally including some riding around with a particular driver on the bus, each with different views on the world, jocular, heavy, contemplative, religious, trying to help Beth, or not; and then also some time off the bus, and then finally about the history of the Simon family and dealing with Beth through the years.It's actually a very easy read, and the different profiles of the bus drivers, intelligent, thoughtful folk (for the ones that get profiled; Simon notes they're not all like that), add some nice variety. But the most interesting part of it is Simon's coming to grapple with her sister and her life, and what it means for her to be a good sister, and a more open person. Simon turned away from her sister some when she was growing up, but she didn't even really know what it meant for people to have the sort of disability her sister has. She hadn't done the research on it until during the year in question, and she hadn't tried to understand her sister's place in life, why she wanted to ride the buses, the level of self-determination she has.The overall trend in care for those with mental retardation has been to give them more control over their lives, and the book shows both the plusses and minuses of this system - Beth makes her decision about how to make her life fulfilling, but she makes her own bad decisions, too, and it's hard for her sister to watch. But she does get a lot more respect for her sister, and eventually, the feeling becomes more mutual. Beth's fiercely independent, but they do manage to make it work out between them, so that they each have their place with the other.I actually did come to enjoy this book after the beginning. It's a more complex story, written clearly and with enough emotion to become invested. I learned much about the toughness of the situation, the complexity of living with someone with a real cognitive disability, but that they're really still a complete, full person. Realizing that is hard even when you're in the situation; even with my mom being a special ed teacher, I have a hard time remembering this sometimes.Anyway, it is an interesting, informative, and, yes, heart-warming read. But not in that bad way. In a better one.

[bookconcierge · Rating: 4 out of 5 stars]

Nonfiction / memoirRachel's sister Beth has mental retardation. She lives in a subsidized apartment, has a boyfriend (also with mental retardation), but has no job - except to ride the city's buses all day, every day. Beth remembers drivers' birthdays, their coffee and lunch preferences. The year Rachel spends riding the bus with her sister is a year of personal growth - for Rachel and Beth. The experience opens Rachel's heart and teaches her to risk heartache. Excellent and moving.