Riding the Bus with My Sister

Riding the Bus with My Sister

by

Rachel Simon

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Riding the Bus with My Sister: 16. June: Disabilities Summary & Analysis

Summary
Analysis
Rachel asks Beth where they are—Beth doesn’t know what street they’re on, but only the corner ahead. Rachel admits that six months into her year riding the buses, her “older, more disgruntled feelings about Beth” have started to come out again. She struggles with Beth’s selfishness, stubbornness, and refusal to learn new concepts. Beth is also totally indifferent to other people’s needs, including Rachel’s. But she can be kind, generous, and self-aware. Rachel wonders how much of this is due to Beth’s disability, and how much of it is just who she is.
Rachel isn’t proud to reach a breaking point with Beth, but she also recognizes that her capacity for empathy, compassion, and patience is far from limitless. She wants to learn more about Beth’s disability so that she can answer the difficult questions that continue to gnaw at her: can Beth change? To what extent? Is it fair to expect her to do so? And, most importantly, is it possible to draw a line between her disability and her personality at all?
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During one of their monthly phone calls, Rachel asks Olivia what her job has taught her about people with intellectual disabilities. Olivia explains that, during her training, she learned that it takes longer for people like Beth to process information. She’s frustrated by how other people condescend to people like Beth but says that Beth is “a joy to work with.” After the call, Rachel decides that she still needs to understand more about Beth’s condition. Her family didn’t talk about it much when she was growing up.
Rachel envies Olivia’s tact at dealing with Beth’s flaws, and she recognizes that this is the result of Olivia’s professional training. Rachel and Beth’s parents always avoided talking about Beth’s disability because they didn’t want anyone to single Beth out. But this had an unintended consequence, too: because they never learned to understand Beth’s differences, Rachel and her siblings never learned how to accommodate them.
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During Rachel’s next visit, Beth spends all day on the buses, talking nonstop about her fights with other drivers. An old man complains to Rachel, and later, a woman on the street yells at her, saying that she has to control her sister. In the evening, Rachel asks Beth to talk a little more quietly on the bus, and Beth yells to everyone that she doesn’t think she’s talking too loudly.
The old man and woman believe that Rachel is responsible for Beth, like a parent for their child. This is because they assume that Beth cannot truly be responsible for decisions. In contrast, Rachel’s conversations with Olivia and experiences with Beth have shown her that Beth can make her own decisions and face the consequences—even if she usually does so by ignoring them.
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Before bed, Beth proudly declares that, tomorrow, she’s going to yell at a girl who recently criticized her on the bus. Rachel asks Beth why she can’t be kinder, but Beth insists that it doesn’t matter. Rachel tells Beth to keep her criticisms of others to herself and apologize when she hurts people, but Beth says that she doesn’t believe in apologizing. Rachel insists that “other people have feelings,” and Beth replies, “I don’t know.” Exasperated, Rachel runs into Beth’s bedroom and contemplates stopping her visits. But she has promised to keep coming for a year.
Beth’s plan to get revenge over a minor slight suggests that she totally lacks empathy, and her defensive response (“I don’t know”) demonstrates that she has no interest in changing. Whereas Jesse copes with others’ harmful behavior by recognizing that it comes from ignorance, Beth does so by brushing off attacks and then striking back with a vengeance. This is all the more troubling because, as Rachel has learned, successfully dealing with Beth requires a great deal of empathy. Thus, Rachel and Beth’s relationship consistently requires Rachel to give far more than she receives in return.
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Once again, Rachel asks herself, “How much is Beth, and how much is Beth’s brain?” She starts researching on the internet. She learns that about three percent of Americans have developmental disabilities, and “mental age” is a technical term in IQ testing—it doesn’t mean that disabled people are stuck at a child’s level of development. Rachel learns to say “[person] with mental retardation,” not “mentally retarded [person].” Some groups are even moving past the term “retardation” and using the terms cognitive, intellectual, and developmental disability instead.
Rachel discovers that while the concepts of IQ and “mental age” tend to dominate conversations about developmental disability, they actually describe a relatively small aspect of what makes Beth different from other people. Such conversations tend to imply that people with developmental disabilities will inevitably struggle with all ordinary adult skills because of their lower scores on IQ tests, but in reality, IQ only captures people’s ability to perform a very specific kind of analytical thinking. (It also happens to be the main criterion for categorizing different levels of developmental disability.) Next, Rachel’s research into terminology shows her that the words we use to talk about people with disabilities make a significant difference in their lives. This is because words carry assumptions. For instance, “disabled person” defines people through their disabilities, while “person with a disability” emphasizes that disability is just one of many aspects of their personality. Similarly, the terms “retarded” and “mental retardation” have long been considered obsolete and offensive because they have become associated with the slur derived from them. Readers should remember that Rachel is describing her research from 1999, and as she notes in her Author’s Note, these terms should now be retired.
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Rachel next learns that many different conditions can cause developmental disability, but the cause is often unknown—including in most “mild” cases, like Beth’s. From a psychology textbook, Rachel learns that people in the “mild” category generally score like 8- to 11-year-olds on IQ tests, have adolescent-level social skills, and struggle to understand that their actions have consequences. She thinks that this perfectly captures Beth. The textbook goes on to explain that people with more severe intellectual disabilities often can’t read and write, fully control their movements, or live on their own.
Rachel’s family was long devastated to never learn why Beth was born with a developmental disability, but Rachel’s internet research shows her that this lack of explanation is the norm, not the exception. It also helps her clearly identify which aspects of Beth’s behavior and personality can be clearly attributed to her disability. And perhaps most importantly, it reminds her that the fact that people with developmental disabilities score like children on IQ tests doesn’t mean that they should actually be treated like children—especially when it comes to their moral responsibility for their actions. Finally, readers might wonder why Rachel didn’t look up disability on the internet any sooner, but it’s helpful to remember that she wrote this book in 1999—only a year after Google was created.
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Rachel learns that to be classified as intellectually disabled, someone must have an IQ below 75 and serious issues, starting before age 18, with at least two key daily skills—such as communication, self-care, social abilities, and health and safety. She realizes that Beth struggles with practically all of these skills, and she clearly meets the other criteria, too. Rachel concludes that, in the future, she can’t expect Beth to understand her advice immediately, and she must learn to respond to Beth’s limitations with sympathy rather than frustration. She wonders why it took her so many years to finally do this research. She may never clearly figure out “how much is Beth and how much is Beth’s brain,” but she can finally accept that Beth will journey through life at her own, slower pace.
Rachel concludes that while she can never find a clear dividing line between Beth’s personality ends and her disability begins, she can learn to set more reasonable expectations for Beth. She learns that Beth can change and become a better person, but only if she receives plenty of time, support, and encouragement along the way. Thus, Beth’s failure to change so far doesn’t mean that she never will—instead, it means that Rachel is doing exactly what she needs to if she wants to help Beth change further down the line. Her final thought in this chapter reframes developmental disability in a significant way: it’s not an inherent limit on what people can ever accomplish or become, but rather a different rate of learning and growth. Thus, people like Beth can truly do anything that non-disabled people can—it will generally just take them longer. The destination is no different, just the journey needed to get there.
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