Riding the Bus with My Sister is Rachel Simon’s memoir about her relationship with her sister Beth, who lives with a developmental disability and devotes her time to riding the buses around her Pennsylvania city. For many years, Rachel and her family viewed Beth’s bus-riding as an eccentric, pointless, and slightly embarrassing hobby—they hoped that she would stop and get an ordinary job. But when Rachel decides to spend a year repeatedly visiting and riding the buses with Beth, she realizes that Beth is actually far happier and more fulfilled than she is. Not only does Beth treat bus-riding as seriously as any job, but she also finds a sustainable kind of freedom, excitement, and community through it. Rachel’s experience with Beth leads her to rethink her assumptions about what a good life looks like for people with disabilities. Even though they have different needs, preferences, and strengths than non-disabled people, Rachel argues, they ultimately thrive under the same conditions as everyone else—when they have the freedom to live how they want and pursue their own desires. Thus, she concludes that society ought to give people with disabilities the specific kinds of resources and support that they need to flourish as individuals.
Rachel Simon’s journey shows how simply understanding disabilities is the first step toward making the world better for disabled people. At first, Rachel struggles to connect with Beth simply because she doesn’t fully understand Beth’s disability. While she has always known that Beth is different, she doesn’t clearly understand what it’s like to be Beth, or why Beth lives the way she does. Neither do her family and friends—so everyone just tries not to talk about Beth. In fact, many of the people Beth meets in her day-to-day life avoid or insult her for the same reason. This shows how non-disabled people’s failure to understand disabilities can isolate and marginalize people who have them. But, by choosing to participate in Beth’s life, Rachel manages to finally understand it. She sees that Beth rides the buses not out of loneliness or boredom, but rather because she loves befriending the drivers and traveling around town. Far from the stereotype of developmentally disabled people as incompetent and defenseless, Beth is independent and streetwise—and far more so than Rachel. Thus, Rachel realizes that it’s wrong to assume that developmentally disabled people are all the same and should live the same kinds of lives—instead, they have to be viewed and treated as individuals with their own particular needs, just like everyone else. Over her year with Beth, Rachel also starts to understand developmental disability itself. She learns that while people with mild intellectual disabilities (like Beth) generally struggle with certain everyday tasks and commitments, they’re still able to understand complex ideas and make serious decisions. They just need the right support. Rachel concludes that, like everyone else, “Beth is on a journey”—but her “bus [just] chugs along a lot more slowly.”
Based on her newfound understanding of disability, Rachel endorses self-determination—or the principle that, as much as possible, people with disabilities should make their own independent decisions about how to live. This principle contradicts the common wisdom about people with intellectual disabilities: that they are incapable of making their own decisions, so others must make those decisions for them. Rachel’s time with her sister shows her that this one-size-fits-all model is wrong—for instance, formal treatment programs badly fail Beth, who prefers living alone and socializing with non-disabled people to living in a group home, surrounded by other people with intellectual disabilities. In fact, Beth’s life embodies self-determination: she does what she wants with her time, and she doesn’t want to change a thing. At her yearly meetings with her care team, she simply affirms that she’s perfectly happy with the way things are—even if others, like Rachel and her parents, are not. Still, Rachel ultimately realizes that it’s far more important for Beth to follow her own values than for her to follow other people’s.
Rachel concludes that society has to make certain special accommodations for people with disabilities, to give them the same chances of achieving self-determination as non-disabled people. First and foremost, Rachel suggests that society must support people with disabilities by fighting prejudice against them. This includes encouraging tolerance and spreading reasonable expectations for dealing with people with disabilities, so that they can comfortably navigate public spaces (like Beth’s buses). Needless to say, Rachel hopes that her book will play a part in this necessary culture change. Second, public investment in public services (like buses) and social service agencies (like the ones that support Beth) is key to ensuring that people with disabilities can live free, dignified lives. For instance, Beth’s liaison Olivia checks up with her monthly to make sure that she is getting all the services she needs, and her nurse Mary attends medical appointments with her to make sure that she fully understands the doctors. But Rachel emphasizes that these agencies’ purpose should be to help fulfill disabled people’s individualized needs and desires, and not to impose other ways of life on them.
Of course, empathy and understanding are also key to helping people with disabilities flourish. But even after dedicating a year to understanding her sister and the disability rights movement, Rachel Simon admits that certain elements of self-determination still don’t entirely make sense to her. For instance, she continues to worry about Beth’s poor health habits and reluctance to go to the doctor. She hopes that Beth will eventually understand and change these habits, but she also recognizes that Beth’s right to make her own decisions is still more important. Thus, doing what’s best for Beth doesn’t mean taking away her autonomy, but rather giving her the support she needs to make better decisions for herself.
Disability, Access, and Self-Determination ThemeTracker
Disability, Access, and Self-Determination Quotes in Riding the Bus with My Sister
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.
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.
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. […] 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.
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.
“Yeah,” she says with a quick nod. “He’s cool.”
Ah, yes. Cool. As my speech might sometimes seem unintelligible to Beth, so can hers seem to me, because Beth has her own lingo. And in Beth-speak, as I have gathered from her letters, “cool” does not concern hip attire or trendy indifference. Instead, it is the term of highest approval, bestowed only upon those people Beth deems worthy of her attention and trust, and crucial if one is to be promoted into her personal Top Ten (though, in truth, hip-hop shades or chiseled Brad Pitt features—neither of which the Professor possesses—are apt to increase the likelihood of admission). “Yes,” I say. “I guess I do mean he’s cool.”
“Every day right here in this seat, I have history riding with me.
And that’s what I like about it. There’s so much richness on a bus—really, so much richness everywhere—if you just develop the ability to look at life with a different eye, and appreciate the opportunities offered to you.”
“I told her, but she said I still couldn’t come in. If they don’t want me there, I don’t want to go there.”
I try to wash the outrage from my face, as well as my surprise at her reaction. I think of the bookstore customers who’d call the president of the company if we dared say such a thing to them. I think of the libraries that homeless people have sued successfully so they could pass their days at a reading table. But lawyers, and the right to demand rights, are part of a world that Beth’s aware of but doesn’t seem to want to inhabit.
There it is again, that deep voice grumbling on inside me: How can she be so blithe about the possibility of trouble? You can’t let her do that. She may be putting herself in real jeopardy!
I take a deep breath. Despite her familiarity with this city, I’m not sure she fully understands, or accepts, how perilous the world can be. Yet if I get too “bossy,” I know she’ll dig in her heels all the harder. I also know it would be a great loss if I let some inner voice of criticism come between us. I’m enamored of her feistiness and her keen-witted street savvy. I feel privileged to be her sidekick. I want this year to go on.
Mommy sits Max and Laura and me down in her room and closes the door. She tells us, “Beth needs a little extra help sometimes, and whenever you see that she does, help her. Don’t you ever forget: it could have happened to any one of you.”
Daddy says, “Some people send mentally retarded kids away to institutions, but we’ll never do that. Ever, ever, ever. We’ll always have room for her.”
Then when they get up and open the doors I think about how we just heard two words that they never say in front of Beth: “mentally retarded.” We never ask why, we just go back to playing with her. But we know, too, not to say those words where she can hear them.
I tell my friends I want to know what “their own kind” means. […] Okay, so she’s a tiny, sassy, roly-poly, Crayola-bright, nonpracticing Jewish chatterbox, and he’s a five-feet-four, bashful, sinewy, Lycra-clad, nonpracticing Baptist loner. Yet she makes sure he’s safer by buying him a bike helmet. He makes sure she’s prettier by shaving the hair that grows on her face. They scratch each other’s backs, and they accept each other’s moles. They argue over her queen bee ways or his reticence; they make up. He hangs his bike awards in her apartment. She keeps the redial button on her phone set to call him. They agree that they both want their own space and should remain unmarried, visiting in mornings or evenings, remaining alone with their dreams. I am still longing to meet my own kind, whatever that is, and I wonder who among these critics has met theirs.
The hostess, who is also the waitress, has shed all traces of her earlier inhospitality, and she doesn’t ignore Beth and Jesse, as some waitresses would do, waiting for me to act as the interpreter. Instead, she asks them what they want. It must be taxing for her, I think, as she pockets her pad and walks off; it’s perplexing enough for me. And how can she assess the proper way to behave, when my conversations with friends have made plain to me how little even the most enlightened of them knows about people like my sister? After all, until Beth’s generation, many people with mental retardation were shut away in institutions and attics.
Beth wipes a bread crumb from Jesse’s small mustache. I bite into a roll, so frazzled that my hand is trembling. Now I understand that it’s not just Jesse’s blind eye or mental disability that discourages him from accepting my offers to join us in restaurants. There’s so much separateness in this almost empty room that I can’t breathe.
“Don’t pay him no mind,” Jesse says quietly, having observed more than I’d realized. “People is gonna look all day, and they might say that they don’t think it’s right, but it’s not really for them to judge. As long as you be nice to a person, looks don’t matter. You in this world, and you gotta accept it.”
“Yeah,” Beth says. “Sometimes people give us looks, but I don’t think about it.”
Put a lid on it, Beth, the dark voice inside me wants to say—the same voice that’s been piping up since this year began, and especially in my past few trips to see her. You’ve said precisely the same thing to every driver today, regardless of how the last one responded. Can’t you get back to a sweeter mood? Would it be such a hardship to listen to someone else for a minute?
I hang up in a swirl of relief and shame. I have lived with mental retardation for thirty-nine years, and I have never asked anyone what it really is. In the interest of raising four equal children, our parents almost never uttered the words except in private and never added books about mental retardation to our shelves. In fact, I’d read about this disability only in works of fiction […] and none of them answered the questions that I hadn’t thought to ask. But why should it have occurred to me to do so? Mental retardation had just always been my sister, and my sister had always been it.
I still have not untangled how much is Beth and how much is Beth’s brain, nor whether, when she does not welcome new conversations, fashions, manners, boundaries, or concepts of space, it is because she cannot, or will not, or is simply not in a mood to open her mind at a given moment. I also have not ascertained how much, if any, of her self-centeredness is a result of her mental retardation. And, given the inextricable weave of nature and nurture, of self and society, that exists in all of us, it seems unlikely that I ever will.
But now I do know that, like me, and the drivers, Beth is on a journey. It’s just that Beth’s bus chugs along a lot more slowly.
Wouldn’t it be nice, even liberating, if I could begin to see beyond my cynicism and resistance and controlling impulses? […] I think about how so many of these drivers, at crucial turning points, learned to view and inhabit their own lives in fresh ways, [and] slowly it comes to me.
Beth is living by her own choices, unfettered by the whims of an institution or group home placement decision; she travels according to the starred dots on her map; she eats what she likes when she’s hungry; she boldly dresses in a fireworks display of ensembles that declare, Look at me, I count in this world. She is, in many ways, the embodiment of self-determination.
A tension that I hadn’t even realized I’d been feeling—a tension that has possessed my body throughout this day—for weeks, no, for months—begins to ease.
To Beth, every day is Independence Day. This was not true for the first half of her life, and for the next quarter it was more of a rebel war, with its own versions of boycotts (particularly at meals), Boston Tea Parties (I shudder to remember her efforts to overturn the order in her classroom), and a one-woman Minuteman regiment. Since she has lived on her own, though, each day her actions declare anew that all men are created equal, and have the inalienable right to life, liberty, and, especially, the pursuit of happiness. I love this about her, and, now that I have come to see her as proudly bearing the torch of self-determination, I regard her as courageous, a social pioneer.
“I wish I had a ‘Help Anyone, Anytime Book,’ like Jack’s.”
What I want is a guide to being a good sister, to doing well by Beth, and I would leave it propped on my lap all the time. There would be instructions on how to adjust my guidance to her self-reliance, and how to find the difference between caring and controlling.
She goes on and on, and now the dark voice, which I thought I’d laid to rest last month, roars within me again. I squeeze my hands together. When I started riding the buses, I remember, I thought of the people who didn’t like Beth as insensitive and narrow-minded. Now I find myself more sympathetic to their point of view. Yes, some of them are coarse and offensively vocal. But she is so loud. And she talks all the time. About nothing. I know many of us babble on about nothing, too, but she does it over and over and over—and over and over and over—and it’s really eroding the limits of my endurance. Dad used to tell us he came to dread their car rides to work for precisely the same reasons. That was twenty years ago.