Riding the Bus with my Sister

Just up the street from me live some 80 people in supported accommodation. Their problems range from intellectual disabilities to schizophrenia to frontal lobe damage caused by stroke or other injuries. Some of these neighbours are easy to get along with; we lean against our garden wall and chat about the weather or the footy. Some are just familiar-looking strangers we pass by on the street. And several are more difficult: paranoid, verbally abusive, erratic and even, at times, physically threatening.

Each person is, of course, an individual, and their problems are only one facet of their personality; but there are certainly times when I lack patience with some of them: those who chat one day and treat me as a stranger the next; those who scream abuse; those who shout and sing just in front of our house when I'm trying to settle a baby.

Meanwhile one of the crossing ladies at school is well and truly on the autism scale, and to my shame there are days I find it difficult to greet her cheerfully yet again as she obsessively calls out everyone's name, holds the same short conversation as yesterday and the day before and every day for three years before that, and refuses to believe that a young child could be terrified as she shoves her large face into the pram.

So it was with great interest that I read Riding the Bus with My Sister, by Rachel Simon. Simon's sister Beth has mental retardation (Simon's phrase). Beth is able to live by herself in a form of supported accommodation, but she does not, and possibly cannot, work. Instead, she spends her days riding buses. Every morning, she rises early and heads to one bus stop or another, then criss-crosses town meeting up with her favourite drivers. On the bus she sits in 'her' seat, cattycorner to the driver, plays music on her portable radio, and makes loud observations about life, the bus drivers, fellow passengers and whatever else excites her attention. One year, Beth exacted a promise from Simon to spend twelve months riding the buses with her whenever possible, and the book is the result of that year.

Simon uses the book to tell several stories. The first is, of course, the story of riding the buses with Beth, who is spirited, belligerent, defensive, large, loud, opinionated, bossy and unforgiving. Simon charts a year of early starts and sisterly conflict; bus drivers and health professionals; and mad dashes to public bathrooms at timing points. Some of the bus drivers are particularly charming. Among their ranks are story tellers, philosophers and comedians, and their hospitality towards Beth far exceeds their duty as drivers; these stories alone are worth the read.

The book also documents the relationship between the sisters. Before the year, Simon and Beth lived in different cities and had grown apart. Simon writes quite honestly of her discomfort with Beth's issues, both historical (having the sister in the 'slow' class at school) and current. Beth sounds exasperating, and Simon struggles through the year to come to terms with who Beth is now, rather than with who she wishes Beth might be. She investigates how much of Beth's personality may be an expression of her disability, and gains some new insights into why her sister is the way she is. Despite her ongoing ambiguous feelings about some aspects of Beth's personality, Simon documents a growing respect for her resourcefulness and a much gentler love for her.

Her year with Beth was also an opportunity for Simon to reflect on her own emotional state. Her significant relationship had fallen to pieces; she was working insanely long hours and was deeply lonely. Slowing down and spending time with Beth, as well as the more philosophical, pastoral or compassionate bus drivers, helped her reflect on what she had prioritised in life, and enabled her to make some different choices.

The final part of the story is their shared history, told in flashbacks through the book. Their parents split up, and their mother fell into a pattern of abusive relationships which ended in the abrupt abandonment of her children.

Simon's slight tendency to make everything neat is more than compensated for by the dynamic people in this book: Beth, her long term boyfriend Jessie, the bus drivers, even Simon herself. It is a pleasure to read. But what makes Riding the Bus really valuable are the questions it raises. What is it like to have a sister who is largely oblivious to one's own needs and the needs of others? How do you talk with someone like this? Who is responsible to care for such a person, and what supports need to be in place? What are the emotional and relational costs of caring for such a child? How liberating is self determination if the person making decisions is constantly self-destructive? What are the ethics of sterilisation when someone is sexually active and loves small children, yet is incapable of caring for a baby? How can someone express hospitality through their work, and what are the limits? Over the course of the book, Simon grapples with these and other difficult questions from a very personal vantage point.

It's a book which makes me think carefully about how I treat my neighbours, my crossing lady, or anyone else with a mental illness or disability. There are certainly times when I want to shun one or another because, quite frankly, they are a pain in the butt. Other times I am tired and grumpy and lack the patience to have yet another boring conversation about the weather. Riding the Bus with My Sister is a great gift because it reminds me to slow down, and have patience.

It shows how one such person is a dynamic whole person, embedded in a community, and reminds the reader of the obvious but easily forgotten point that people with mental disabilities have families, histories, stories, secrets and desires, just like everyone else; and, like everyone else, they come bearing gifts. Whether or not we take the time to recognise and receive those gifts is up to us.