Riding The Bus With My Sister

“I did ride with her, and over that day I was touched by the bus driver’s 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.” 

Rachel’s experiences with her sister have not often been in such public settings. They have spent most of their time together in the family home, or at Beth’s first group home. She has not experienced a wide range of public reactions to Beth, so spending time with her on the bus gives Rachel a much better sense of what Beth encounters in the world. This view is both distressing and uplifting and will ultimately lead Rachel toward a great deal of compassion for Beth and all people with disabilities.

“We’ll lie on the soft blades, and look up into the sunlight coming through the lattice between us and the outside, and one of us will surely spot it: the beautiful strands of the huge spider web in the corner, shining like diamonds in the sunbeams. As we watch it sparkle, and point to how each thread runs magically right into each other thread, she’ll hold her arm out for me to tickle.” 

The text returns to this image of the spider web many times. This memory seems to represent a time in Beth and Rachel’s life when they were developmentally close and emotionally bonded. They both remember the web and the arm-tickling with fondness. As the book progresses, the motif of the web comes back to represent Beth and Rachel’s interwoven histories, feelings, relationships, and pain. 

“I realize two things: that Beth knows she’s safe holding onto me, and that I kind of like that feeling.” 

Early in childhood, Rachel and Beth form a tight bond, closer than any of their siblings. This sense of safety that Beth feels with Rachel will come to be the blessing and the curse that Rachel must wrestle with. As we see in this quote, Rachel likes the feeling of taking care of her, but she will later feel burdened and guilty. It will take their journey together for Beth to relearn that early sense of safety and trust with Rachel.  

“But Beth is no mere knight’s servant. She is directing her own adventure. She might seem at first like Sancho Panza, but she is really Don Quixote.” 

Don Quixote is a Spanish novel written by Cervantes. Rachel makes this allusion to alert the reader to the fact that she knows Beth is more than a funny sidekick (like Sancho Panza) and instead believes this is Beth’s story and her life is full of adventure. Beth is the one in charge now, deciding just which course her adventure will take. Rachel, on the other hand, is more akin to Beth’s sidekick on the buses, offering her witty commentary and social observations along the way.   

“I don’t tell Beth that it’s much easier to remain in my apartment with my books than to greet a date at the door. I don’t tell her that I am afraid to care about someone who might back away and move on. Or whom I might never be able to let myself love.” 

Rachel admits that she uses work to keep herself isolated and to avoid the potential pain of intimate relationships. She is afraid of being hurt in the same way that her mother was hurt. She is also afraid to open up at this level with Beth. 

“So I don’t see Beth’s confused face as she peers into the smoke at Mom and this man, trying to put all this together. I don’t see the jack-in-the-box getting ready to erupt, in the room right underneath my feet.” 

The jack-in-the-box represents the stepfather who will soon erupt with anger and take Beth and their mother far away. Rachel uses the childhood toy metaphorically to show how something that may seem obvious to an adult can take a child by surprise and scare them senseless. Beth is the child, being taken along for the ride, until one day he erupts, scaring Beth into submission. Similarly, as soon as the “bad man” enters their lives, their childhood effectively ends, and their family unit is split apart. 

“Estella sighs and says to us, ‘Sometimes I want to move on from this job. There’s a lot of stress. But I guess I’m where I’m supposed to be, at least for now. The people who go through big things, they’re the ones that can help other people, and I think that’s why I’m now here.’” 

“Maybe, when women gathered for quilting bees, or when men played checkers outside the general store, or when everyone came together at village dances and July Fourth picnics, this ease helped people feel less alone in their worries.” 

“Why doesn’t she notice that anyone else has needs?” 

These are the kinds of questions that Rachel has raised over and over again with frustration. She keeps bumping up against these hurdles with Beth because she expects and wants Beth to react like a typically abled sister. Beth may or may not notice the subtleties of communication that would lead her to recognize other people’s needs. Rachel’s expecting her to pick up on social cues and react the same way that Rachel would shows Rachel’s ignorance at this point in the story.  

“I discover that 2.5 to 3 percent of the American population has mental retardation, which, based on the 1990 Census, means between 6.2 and 7.5 million people. That’s a lot of Beths out there.” 

As we learn from the flashbacks to Rachel and Beth’s childhoods, Beth lived in near isolation for much of her life. When she did come in contact with public education, she was separated from the mainstream classes. Later, when she had a job, she was segregated in a sheltered workshop. Her story illustrates the ways in which about 7 million people can live in America and go basically unseen by the general population, and the importance of raising their visibility. 

“Indeed, anger is a foolish and pointless response when I should actually expect limitations.” 

Rachel is starting to learn that her habituated responses to Beth are never going to work. She must make accommodations for her sister if she is going to have a healthy relationship with her. Similarly, the reader can learn through Rachel’s experience that expecting a person with an intellectual disability to respond or behave like a typically abled person is a set-up for failure.  

“Yes, there was a missing person here; we were twins thirty-nine times before I even started to find out about Beth.” 

Rachel admits that she has been an absent sister. She has gone 39 years without attempting to truly understand her sister, yet she has heaped judgement and expectations on Beth. Rachel has been trying to change Beth rather than trying to meet her where she is, until now. Simon’s showing just how ignorant she was even after having grown up with a sister with an intellectual disability makes it clear how far the culture needs to go in terms of awareness. 

“When I started riding the buses, I was so enthralled by Beth’s happiness and cooperative relationships with the drivers that I forgot about my wish that she would work. But in the past month, when Beth completely eschews the idea, a sourness burns in my throat. […] as I have come to see it, she is selling herself short.” 

At this point, Rachel sees Beth’s lifestyle as wasteful. She wants Beth to be like herself and their siblings: a hard worker. Rachel cannot stand that Beth would rather be idle than hold down a job, and this causes friction between them. Because Rachel has not yet accepted Beth as an adult capable of making her own decisions, she cannot accept Beth’s decision not to work. For the workaholic Rachel, identity and career are intertwined, and Beth’s lack of a job sharply contrasts with Rachel’s obsession with work.  

“But if you guys can’t agree […] how can I figure out the right things to do?” 

Rachel doesn’t know how to straddle the line between supporting Beth’s self-determination and bossing her around. She attends a conference to learn from the professionals and leaves feeling even more confused, but she also learns that this feeling of not knowing doesn’t mean she is failing. The book is highlighting how difficult it is to navigate self-determination and the importance of networks for people with disabilities. Sometimes a decision that a professional makes isn’t the same one the client’s loved one would make. Having lots of people and differing voices involved makes the community stronger and offers more robust choices. 

“Beth has sought out mentors in places where others might not look, and, moreover, taken the time, and endured the pain, to weed out those drivers who are decent and kind and reflective from those who are indifferent or hostile.” 

This passage demonstrates Rachel’s shifting perception of Beth. She is coming to see just how much work, planning, and pain Beth has endured to get to the place she’s in now with her drivers. When Rachel thinks of all the time Beth has spent getting to know people and their routes, she is amazed at Beth’s intelligence, creativity, and perseverance. She may not earn money, but she works hard for her lifestyle. 

“You should say what you believe.” 

Beth stands up to two racist women at the bus stop because she believes in kindness and fair treatment. She is brave and stronger than most. It would be easy for Beth to keep to herself and focus on her own struggles, but she seems to understand at a deep level that equal rights are for everyone, and the way one minority group is treated is linked with the way all minorities are treated. Beth is an advocate, too.  

“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 used to go in there with her,’ Vera said, nodding toward the grocery store. ‘But I’d say, “You need vegetables,” and she’d just walk by them, so to keep from getting upset I wait outside now.’” 

Vera offers a healthy model of working with Beth without trying to force her agenda onto Beth. Following the principles of self-determination means allowing Beth to make her own decisions as any other adult would. Vera shows Rachel by example what it means to respect Beth’s autonomy, even if it does frustrate her. Vera has to manage her emotions around Beth’s decisions. It is not Beth’s job to make Vera (or Rachel) happy. 

“What does help mean, I longed to ask, for someone who wants to do everything on her own, even if she does it badly? And who has too much pride to reveal vulnerability?” 

Rachel’s struggle with Beth’s pride is ironic because she doesn’t recognize that in her description of her sister, she is also describing herself. For example, Rachel will not accept help from a therapist, and for a long time she will not ask for help to become a better sister. She is too afraid to show her own vulnerability, particularly her ignorance about Beth’s diagnosis, to ask for help.   

“The power to observe is the power to learn.” 

This quip from a driver encapsulates the work of this memoir. Rachel spent a year observing her sister and the complicated social world of the city bus system, and she learned more about herself and her sister in that year than she ever had. Many of the drivers believe they are good at their jobs because they are naturally observant and good at reading both people and situations and acting quickly. 

“When he tells us, we all feel a fury too huge and confusing to face. Laura and Max vow never to think of her again—she is dead to them. As for me, I just bury my fury inside a layer of ice. I tell myself that I will get such good grades that I won’t see my anger or pain.” 

Here we see the beginning of Rachel’s workaholism and anti-social behaviors. The pain of her mother’s abandonment is too great to bear, so she turns to distractions and achievements to avoid feeling the pain. Unfortunately, she ends up distancing herself from all feelings, not just the pain she wants to avoid.  

“Her face contorts with pain and horror, as if something deep inside her has been shattered.” 

When Rachel tells Beth that she hates her, Beth is devastated. Beth has been through some tough relationships, but only when Rachel hurts her does she show such pain and subsequent remorse for provoking Rachel. It is very clear from how “shattered” she feels that Rachel is Beth’s most important attachment figure, a maternal and sisterly figure and best friend all at once. Beth likes to seem tough and cool, but this scene shows that she is capable of deep emotion and vulnerability.  

“But the biggest change has been my own, and on this brilliant spring morning sixteen months after I climbed the mountain with Rick, I know that it would never have happened had I not spent my year with Beth. It was she whose very presence caused the ice around my heart to thaw and who nudged me tenaciously to find the courage to go out with a man again.” 

Although Beth and Rachel suffered the same family traumas as children, Beth never lost her ability to love. Unlike Rachel, who felt that her heart had to be frozen to protect it, Beth keeps her heart open to those who are kind. Rachel learned something about discretion and trust from Beth and, through the example of Jesse and Beth’s love, allowed herself to try again.