Riding the ADA bus at 30

A series of recent discussions on the 30 anniversary of the ADA has led me to review and re-review a piece which I wrote for a now-defunct publication in 2013: Rachel Simon, Riding the Bus with my Sister: A True Life Journey (Tenth Anniversary Edition) (New York: Grand Central Publishing, 2013).

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“I'm diffrent! I'm diffrent!”

In her opening pages, author Rachel Simon quotes these words spoken by her sister Beth “as if she were hurling a challenge . . . beyond the limits of the sky.” A challenge, for that's what we alway face. But I also wonder, 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?

Could they be about 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?

“Beyond the limits of the sky”-- recalling the Psalms that long for justice, and asking where God is now?

Or might they be all of these at the same time?

The book tells the story of an older sister visiting her younger sister with a developmental disability. 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 at a point in life where she should be satisfied, but that is not the case. Exploring this feeling, the present becomes a reminder of days when, after a series of medical tests on Beth, a doctor delivers the diagnosis “she's retarded.” It seems dismissive, as if she will never attain personhood, but 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.”

Some of the language may be shocking; as the author explains, that is part of the story and a deliberate choice. The story of Riding the Bus with my Sister is not only that of learning to accept self and others, but the story of the forces and ideas in the 1960s and 1970s that brought together those often separate worlds. Early legislation, such as the Rehabilitation Act, and then the Americans with Disabilities Act have opened doors for people with disabilities. I also grew up in a world of “special needs” and segregation. Change did not come overnight, and there is still a way to go, and some who ought to know better are still in the way, but we now claim the same world.

Changing the world did not end with the ADA. Remembrances and reflections 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.

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? This is all the pertinent as “I can't breathe” has gained added importance as a statement of the need for equity in all of human life.

Language carries with it a raft of baggage, and separation in space becomes separation that reinforces difference. Decried by some as “political correctness,” a shift from identification by diagnosis to person-first language signifies a change from object to subject. No longer called 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, but become someone who joins in our struggles—in my field, the difference between ministry to and ministry 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 whose life becomes clouded by depression. In a day when no one spoke of such things, 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 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.May it be so in our lives.