“I’m diffrent! I’m diffrent!”
In the opening pages of Riding the Bus with My Sister, author Rachel Simon quotes these words spoken by her sister Beth “as if she were hurling a challenge . . . beyond the limits of the sky.” But as one who shares a disability, this writer wonders, might they be something else? Could they be words of rejoicing, a celebration of finding oneself despite a lack of role models? Might they reflect years of frustration with a world that congratulates a few who conform to a popular, comforting model that praises us for overcoming the obstacles placed in our way, a world that does not seem to understand what is really going on, one that does not care to understand, but is always ready to pronounce judgment? Or, recalling classroom days and discussions of philosophy and theology, are Beth’s words all of these at the same time? Such are the explorations of the world that this book invites anyone who cares about others to join.
In structure, the book tells the story of an older sister visiting her younger sister. Beth, who has a developmental disability, lives a few hours away from Rachel. Beth spends her days riding the buses in her town, and the as the story unfolds with its details, so does the story of a life changed. The details of change range from Rachel’s decision to make time to visit, to the problems of lodging, to the events on the bus, talking with Beth there and elsewhere, as well as the drivers and others. We ride along as each visit (about once a month) tells a different aspect of the story. The story of each month also provides the base for a time of anamnesis, remembering and reliving the events that brought the two sisters to be so close and yet so far apart.
As the story begins, there is a deep sense of not knowing, despite wide-ranging searches. Rachel is a point in life where she should be satisfied, but that is not the case. In the anamnesis, the present becomes a reminder of the days when, after a series of medical tests on Beth, a doctor states “we don’t know what caused it” as he delivers the diagnosis “she’s retarded.” It leads to a life-long search for everyone. In a hint of what is to come, although Beth has been labeled as different, the family fights back: Mommy says, “People used to hide mentally retarded kids in back rooms. We will always have her as one of the family.”
That Beth will be part of the family has consequences, of course, and they reach beyond Beth’s life. Rachel recalls seeing her sister in the hall at school, with the other members of her “special” class, and writes of how she feels like shouting a hello, so that “everyone who knows me will spin around the see her and understand that these two separate worlds aren’t two separate worlds at all.”
The language may be shocking; the author explains that she has made a deliberate choice, and that is also part of the story. The story of Riding the Bus with my Sister is, as Rachel notes, not only that of learning to accept self and others, but in a wider realm, the story of the independent living movement. These remembrances and reflections of the past tell of the forces and ideas in the 1960s and 1970s that brought changes to what were often separate worlds. Early legislation, such as the Rehabilitation Act, led to the Americans with Disabilities Act, forever changing the landscape for people with disabilities. Changing the world did not end there; those remembrances and reflections also show that however well-intentioned it is, legislation does not change hearts. Recounting a practical problem that surfaced frequently while riding the bus, Rachel recounts a conversation with Beth:
“They don’t always want us in here.”
“Us?” I ask. “Who do you mean?”
“She frowns, and opens a bathroom door.
“Anybody who’s not them,” she [Beth] says.
There are still differences. How will we approach them? Another time, in a restaurant, where people are watching the pair (joined by Beth’s friend Jesse), she remarks that there is “so much separateness in this almost empty room that I can’t breathe.” Is difference a cause for separation, or can it be a cause for understanding that we are all different, a new challenge to be celebrated?
Language carries with it a raft of baggage in the form of connotations and implications. Separation in space becomes separation in terms that reinforce the difference. Decried by some as “political correctness,” a shift from diagnosis to person-first language signifies a change from object to subject. No longer a “retard,” the “person with a developmental disability” becomes a living being. As a person first, Beth and others are no longer separated from the world like some sort of hero, but becomes someone who joins in our struggles—and, as is often shown, has something to say on the topic. What they have to say is often far more profound than anything those who are “normal” come up with.
As Rachel’s attitude begins to embrace this change in language, she recalls her own past again. There’s the sadness of a mother who doesn’t know why, and whose life becomes clouded by depression. In a day when no one spoke of that either, she left the family for a time. It is a reminder that we often create our own monsters by trying to avoid reality, to hide it away, and not allow it to be part of the family.
It is a tale that makes one think of Mary Shelly’s Frankenstein as, instead of a series of letters to a sister, we join in a series of trips with a sister. These trips unmask the reality and call us to learn about humanity. Like Frankenstein’s creature, Rachel Simon finds the world to be an inhospitable place to anyone who seems to be different. As one driver comments of the sisters, “you’re both shocked at the intolerance in the world.” To that, he adds, “maybe it’s the price you pay to be more human.” That realization leads Rachel and Beth to conflict, but it also leads them to change. The book includes a section of life updates from the original edition of ten years ago. These updates show the price of being human, but also its rewards for both sisters, and for any of us who will join in.
Te subtitle of Frankenstein is The Modern Prometheus, reflecting on the Greek Titan who shared fire, making humanity come alive. After reading Simon’s book, I am again reminded of Teilhard de Chardin’s words that “the day will come when, after harnessing the ether, the winds, the tides, gravitation, we shall harness for God the energies of love. And, on that day, for the second time in the history of the world, man will have discovered fire.” The transformation could not be more complete in this book.
Riding the Bus with my Sister: A True Life Journey (Tenth Anniversary Edition)
New York: Grand Central Publishing, 2013
Disclaimer: the publisher provided a copy of this book for review.