64 pages • 2 hours read
Rachel SimonRiding The Bus With My Sister
Nonfiction | Autobiography / Memoir | Adult | Published in 2002A modern alternative to SparkNotes and CliffsNotes, SuperSummary offers high-quality Study Guides with detailed chapter summaries and analysis of major themes, characters, and more.
Index of Terms
Intellectual Disability
An intellectual disability is defined by whether a person meets three specific criteria. First, they must have an IQ lower than 70–75. Second, they must exhibit significant limitations in two or more skill areas. Skill areas are what we think of as daily tasks that we develop and use independently, such as personal hygiene, the ability to read or write, social skills needed for group activities like school or work, and personal safety. Finally, to qualify for the diagnosis, the individual’s condition must present itself before the age of 18. Beth shows signs of an intellectual disability almost from birth, but it is not until she is in her pre-teens that her behaviors really start to differ from her sisters’. As an adult, she displays many weak skill areas (particularly around her health and personal safety) that make it difficult for Rachel and her family to support her in living independently.
Mental Age
Simon talks about mental age as a frustrating and misleading concept. She says that people who don’t know Beth always want to know what her mental age is, as if that would tell them everything they need to know about her. They equate intellectual disabilities with a childlike state and want to know what part of childhood Beth is emotionally and mentally stuck in. Simon finds through her research that mental age is a misnomer. Mental age is a diagnostic tool and refers only to the score the individual receives on the IQ test. Thus, if Beth receives a mental age score of eight, that does not mean she will act and feel like an eight-year-old, but that her academic abilities might best be represented by a typical eight-year-old. Mental age, as Rachel knows intuitively, does not represent the nature or complexity of Beth’s life experience.
People-First Language
People-first language represents a shift away from describing someone like Beth in derogatory terms. It also helps move away from defining people by their disability. Instead, we can think of a personal with a disability as someone who has a disease like asthma. They are not defined by asthma; instead, they are a person living with asthma. People-first language puts the person first, disability second. For example, Beth is not intellectually disabled; she is a woman with an intellectual disability. Someone without a disability is described not as “normal,” but as typically abled. Simon expresses the importance of using this new language to create a culture of inclusion and to offer respect to people like Beth.
Self-Determination
Self-determination is a movement that concerns the civil rights of people with intellectual and developmental disabilities. Before this movement, people with ID/DD often had major life decisions made for them without their consent or input. For example, a person with ID/DD could be forcibly sterilized. Self-determination argues that people with disabilities should have the same freedom of choice as all citizens. Beth’s aides and case workers aim to assist her in following her own decisions rather than making decisions for her. For example, it is her choice to live independently, and she decides how and where to spend her money, and if and when she will receive medical care. She is in charge of her reproductive health. The idea is that the government will provide financial assistance so that Beth can live freely and manage that assistance as she sees fit. As the case workers reveal to Rachel, however, the concept relies on a network of people to help guide Beth and support her. As Beth’s sister, Rachel finds the concept of self-determination both something to celebrate and something very difficult to navigate when Beth is making detrimental decisions.
