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
ashamed 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 on. 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 forty when she began to get to know Beth, her "retarded"
sister again.
There was far too little in the book about the father's
ordeal during the twenty years 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." And 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 flipflops 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
buses which she rides from early morning till 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 buses.
Her only friend outside the bus system is her boyfriend Jesse, also mentally retarded. Jesse rides bicycles instead of buses. 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 had actually 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.
