About book Riding The Bus With My Sister: A True Life Journey (2003)
"Mentally retarded." Words we said about my sister, but never said to her.As children it hadn't mattered to Rachel Simon that there was "something wrong" with her sister Beth. Beth was only eleven months younger and they were good playmates. But over the next two decades their lives went very different ways. Rachel was shamed and embarrassed at school where other children laughed and mocked the "retards," which led her to a sense of separateness and difference, even resentment. Then their father, a college dean, left the family, pointedly not taking the four children: he'd "met someone." The profoundly depressed mother eventually lost all semblance of function and one by one the older children left, but Beth stayed with her. The mother's circumstances disintegrated, until at last Beth was rescued by her father from a nightmarish situation, but not unscarred or unscathed. Rachel was nearly fortywhen she began to get to know her "retarded" sister again. There was far too little in the book about the father's ordeal over the next twenty years as he tried to do his best with the maturing Beth. She was not docile; she was not cooperative; she definitely did not fit that cliche about the retarded people: "God's little angels." Rachel Simon tells maybe too much of her own personal story instead of the larger picture, but it's the larger picture—with Beth as the heroine, not Rachel—that makes this book worthwhile.Beth is at last living independently in an urban setting when her sister, the author, decides to try to get to know her again. It is not an easy decision because Beth is neither mild and sensitive. She is—at 39—overweight, loud, very often obnoxious, especially to anyone from whom she detects criticism. She wears the clothes an unsupervised nine-year-old might choose, including shorts and flip-flops if the weather's "over forty." Her diet is also similar to that of a nine-year-old. She is not healthy. Her main interest and activity is the city buslines which she rides from early morning to night. Its drivers are her social world and their schedules are her schedule. Although Beth has learned to read and write, and could conceivably hold a menial job like clearing tables at fast-food restaurants, she doesn't, and from what we see of her, it would be unlikely that she would work in public smoothly. What she does is ride the busses. Her other friend is her boyfriend Jesse, also mentally retarded. Jesse rides bicycles instead of busses. And yes, they are lovers—that is, the forbidden and fearful topic of "sexual congress" is part of their lives.Perhaps the most enjoyable aspect of the book is what seem to be accurate transcriptions of the bus trips Rachel takes with Beth; Beth's behavior and conversation were vivid in Simon's writing and certainly underlined the main point of the book: there is no easy categorization of people afflicted with "mental retardation" according to some abstract scale--"mental age," extent of disability, or any other single factor. But in the same way in which the narrator hovers on the threshold between loving acceptance and frustrated rejection of Beth, so the book also hovers on the line between an empathetic portrait of Beth and objectification. It's tricky any time a writer tries to sketch someone whose experience is foreign to both writer and reader. However well Simon succeeds in disabusing her own ignorance and thereby the reader's, she remains—and thus the book does—noncomprehending. She learns, and communicates, why "mental age" is an inadequate measure of the quality of life for any given individual and just how individual, even unpredictably eccentric, a developmentally disabled person can be. She learns how little she actually had ever understood the challenges facing Beth at every level, as well as how difficult is any assistance effort that respects the individual's freedom of choice. And why such respect for that freedom is important. The beginning of coercion is always the beginning of a bad story. The portraits she draws of Beth and of her boyfriend Jesse enlighten us about those challenges. Beth is childish in her resistance to seeing a dentist, choosing a healthier diet for her weight and cholesterol, dressing "sensibly," or foreseeing danger or sickness, or understanding how her behavior offends and bothers other people because of the boundaries she violates with an almost utter lack of empathy. But she is also childlike in her indifference to appearances, to judgments of others based on her manners and niceties; she is childlike in her energy and enthusiasm, her enjoyment and eagerness, her tenacity and her concern for those she cares about.We don't get to know Jesse as well although he seems more serious, more aware of consequences and sensitive to the nuances of relationships. A display of his startling skills in a martial arts routine gives both Simon, and the reader, tangible evidence of the unpredictability of each "disadvantaged" individual. and of the complexities that should unsettle easy stereotypes.Moreover, to add to the ambivalence, Rachel Simon is only too well aware that at the same time she finds Beth pitiable and criticizes her insensitivity, she sees that Beth has devoted friends among the bus-drivers and her caretaking social workers, and unlike her older sister, does have a settled love relationship. Simon on the other hand was unhappily single, a workaholic, and at burnout flashpoint when the bus-riding year begins.There are at least four storylines at work here. First, the portrait of a complex adult with mental disabilities; second, the difficulties encountered within the Simon family in relation to Beth; third, the particular dysfunctionalities within that family that further complicate their lives, and fourth, the author's use the story to increase readers' comprehension of the multiple realities of lives of the "retarded." A fifth storyline cuts across these and blurs them: that of the author's evolution and emotional "salvation" during and because of this year of "Riding the Bus" from a lonely, unhappy workaholic to a blissful woman about to be married. True or not, it seemed sappy and detracted from Beth's story.All of the stories, in fact, come at some expense to the others. The author's happy reconciliation with an ex-fiance was irrelevant hokum to me, no matter how true; I would have preferred more reflection on the general theme of the functionally disadvantaged and their impact on families of origin and vice versa. Her happy ending seemed to me to be of a piece with the "easy cliches" she seems to want to debunk. Now her happy ending probably goes quite a bit further: with the Rosie O'Donnell film directed by Anjelica Huston, the happy ending probably went all the way to the bank.The book made me ponder how our "advanced" civilization, our "progressive" society, has made wounded, injured, invalid or nonfunctional family members an impossible or nearly impossible burden in the busy nuclear family or its remnants. In Nebraska several years ago legislation was passed which was meant to save unwanted infants' lives by offering safe haven for parents to surrender children at hospitals without penalty. Within less than three months fourteen children were left at hospitals: seven of them teens. Legislators and other conservatives called this irresponsible: "they [such parents or grandparents] were tired of parenting," one person sniffed. The truth is that severely depressed or manic or otherwise mentally ill or disabled children are almost unmanageable by parents, especially since almost all adults must be working to support the family. Laws designed to protect children from abuse sometimes go so far that the guardians are prevented from using the only recourse, physical restraints. And with the absence of universal healthcare so that psychiatric help could be obtained and, of course, since the complete dismantling of public psychiatric care in these neo-con decades, the situation is desperate. If you have not witnessed first-hand the craziness of a grandmother or a single parent trying to help defiant and depressed, and sometimes aggressive, children, you probably cannot imagine the circumstances. The Nebraska guardians surrendered those fourteen children hoping that they would therefore get the care they needed. Of course, Nebraska—the last state to pass a safe haven law—quickly adjusted it to rival the strictness of the law in other states: it now applies only to children under thirty days old. And the discussion of the desperation that had been uncovered was quickly silenced.I've digressed. This book will make you do that. Which is to say that it is a compelling non-fiction examination of a largely hidden and mysterious corner of society to those of us who don't have intimacy with the mentally retarded, the developmentally disabled. It was a good book to read for the insights and information it offered. Evaluating books is like evaluating tools. It's not just whether or not it's "good." It's what it's good for. This won't thrill you as literature. But you will probably be glad you read it.
I have an acquaintance (let's call her "Mary") who decided back when we were in 8th grade that she was going to be a welfare queen like her mom and grandma. She currently has a couple of kids, is morbidly obese, and is living the life she dreamed of way back then. So I suppose you can legitimately ask the question, why should someone be forced to be a productive member of society just because they have a disability? I mean, Mary has chosen to simply live off of taxpayer dollars and not contribute. Why should the standards be any higher for Beth because she has MR? I personally find people who can work but don't irritating, but I suppose I don't find Beth any more irritating than all of the other people who "work the system" for a living.The point may also be made that Beth is rude and inconsiderate. True! But I also know lots of rude and inconsiderate people who don't have MR. I don't approve of them, but I wouldn't suggest they be locked away from the rest of society for their obnoxiousness. Again, why should the standards be any higher for Beth? So I suppose the major "dilemma" of the book just isn't that much of a dilemma for me. Yes, Beth has the right to make her own choices. Yes, she's making bad choices. She's neglecting her health, she's hogging resources, and she's irritating a lot of people, but so is Mary. As Americans, we can all choose to be leaches on society! Most of us choose not to, deciding that it's more satisfying (or at least less demeaning) to work than to take a handout. But that's not to say that we can't. I don't agree with Beth's decisions, but she's free to make them.
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This is a truly enlightening book and should be read by educators, students and families of those with special needs. Rachel spent a year documenting her sister's life and trying to understand her. What she learns teaches her more about herself than her sister. She eventually "gets a life" and an advocation helping others understand and respect the mentally handicapped.I had an updated version of the book that includes materials on where the main characters are ten years later which was a big help since I did not need to do my usual internet searches to answer my questions!Rachel's sister Beth is a grown women with mental retardation, she is spirited and stubborn but is able to live independently with some assistance from social services agencies. She spends her days riding the public buses in her Pennsylvania city. The drivers (she only rides with those she feels a bond or at least a comfort level with) function as mentors; the regular passengers are her community and often her cruel bullies and critics. Rachel and some of the drivers can not understand why Beth feels no need to improve her life, learn something new or even earn some money in lieu of getting social security. It takes a long time for Rachel to understand Beth's contented inertia. I have to admit I still think there is something wrong with the system we have put into place but I am glad Beth is not required to live in a less comfortable setting or not have the assistance to grocery shop, etc. that she needs. I am just disappointed that the system instills no need to 'earn' in any way in exchange for the independence and help she enjoys.Rachel eventually experiences personal growth and reconciliation with their troubled mother who abandoned them and helps Beth and their other siblings to gain some closure as well.Great read and would foster really good discussion in a book club.
—Denise
Wow! What an incredible book and inspiring true story. I am so thankful that the author was willing to open up this glimpse of herself and the year she shared on the bus with her sister, Beth. Beth is mentally handicapped and marches to the beat of her own drum. Rachel, her older sister and the author, has returned to make peace with her sister after a long falling out, and in the face of struggles in her own life. Throughout the chapters of the lessons learned during the bus rides, Rachel also unveils snapshots into the past of her family and their struggles, bringing her to the point of riding the buses. Both sisters came out changed after their year together, and after reading the book, I feel changed also. I highly recommend this book to anyone wanting a fresh view of life.
—Natalie
WOW! WOW! WOW!This is one of those books that will stay with me for a long time. This is also a book that will stay on my "read" shelf here at my house because I think I will need to visit it again and again to remind myself what grace and love really look like and just how families CAN heal after all. I HIGHLY recommend this book. It's a book about love, sisters, family and ALL the crazy that goes along with those. Rachel and her sister Beth are amazing and the lessons that Beth teaches Rachel without even realizing it will just break into your heart and stay there forever.
—Dawn Michelle
