She has never spoken a word, never written or typed
a sentence. She has had little formal education, and reads, at best,
at a first grade level, recognizing only simple words placed before
her in a familiar context.
Ruth has been confined to a wheelchair or a bed
for every waking hour of her life. She has never walked, never fed
herself, never combed her own hair, never dressed herself.
Ruth is a quadriplegic,
a victim of cerebral
palsy. Aside from her eyes, ears, nose, digestive system, and
vocal chords (which can produce about ten distinct sounds), Ruth's
body is functionally useless. Her hands do not point or gesture,
her feet and legs cannot kick or support the weight of her seventy-five
Ruth has lived in virtually every situation possible
for a severely handicapped person. She spent her early years at
home with her deeply caring parents and two younger sisters and
brother, first in Amherst, then in Springfield, Massachusetts. She
enjoyed three and a half years at a wonderful private facility,
the Crotched Mountain Rehabilitation Center in Greenfield, New Hampshire.
Then, in 1962, she was committed to a state institution, the Belchertown
(Massachusetts) State School.
Two years after her arrival at Belchertown, a legislative
commission concluded "that the institution had not yet emerged
from the Dark Ages in its treatment of the residents." Nine
years later, another commission called the conditions at Belchertown
"shocking and outrageous." As a result of a lawsuit initiated
by friends and relatives of residents at Belchertown, the federal
district court assumed direct operation of the institution in late
1973 and implemented drastic reforms.
Ruth remained at the State School until June 1978
when, along with four handicapped friends and fellow residents,
she left to live in her own private apartment in Springfield. Currently,
she resides in Northampton, Massachusetts.
This book tells the life story of Ruth Sienkiewicz
Mercer, as recounted by her. It is her autobiography,
written with my assistance. She began work on this project in 1976
while still a resident of the Belchertown State School. Her narrative,
and this book, were completed in 1988.
My story begins at the Cooley Dickinson Hospital in Northampton,
Massachusetts. I was born there on September 23, 1950. Ruth Christine
Sienkiewicz, a healthy baby girl weighing 6 pounds, 3 ounces, the
first child of Marian and Charles Sienkiewicz. Since there were
no complications at birth, my parents took me home to nearby Amherst.
At the age of five weeks, I suddenly became very
ill. I developed an extremely high fever, became severely dehydrated,
and went into convulsions. My parents returned me to the hospital
immediately. I spent the next three weeks being treated for a viral
infection that the doctors thought was some form of encephalitis.
After three weeks, I seemed to have recovered completely. Once again
my parents took me home, to begin what everyone assumed would be
a happy and healthy childhood.
According to my parents, I was a bright, alert, and engaging infant,
and there were no more problems to speak of during my first year
of life. But Mother and Father became quite concerned when they
realized that by the age of thirteen months, I was not making much
progress toward sitting up or talking. Our doctor in Amherst, Dr.
Holden, referred us to the Boston Floating Hospital for a week of
comprehensive physical testing
to determine what was holding me back.
The Boston doctors reported that I was suffering
from cerebral palsy, with marked spasticity
in my arm and leg muscles. They agreed that my earlier sickness
almost certainly had been encephalitis, and they theorized that
the high fever I had experienced had severely damaged my central
nervous system. The doctors predicted that my limbs would remain
weak and inflexible, and that my progress in speaking and walking
would be severely impaired. But they also believed that with proper
physical and speech therapy, and with dedication and hard work by
my parents and myself, I should be able to walk and talk normally
My parents were dismayed. They knew nothing about cerebral palsy,
except what the doctors told them. Understandably, they relied on
their religion to try to make sense of this tragedy. Father was
a Roman Catholic, Mother a Protestant. Both believed that the hand
of God had singled them out in some way. Father felt that my disability
was a kind of punishment for his sins. Mother thought it was God's
way of testing them-- that God had chosen our family because he
knew we would be able to overcome the special problems that it would
present. My parents agreed, however, that my situation was not hopeless,
and they vowed to do everything they could to help me overcome my
After the laughter episode, I redoubled my efforts
to communicate with my new friends. Since Wessie worked din the
morning, she usually fed me breakfast and lunch. As the weeks passed,
she began to talk to me more and more while she was feeding me.
Almost without knowing it, Wessie started to pause after she said
something, as if she was anticipating a response.
During lunch one day in early December 1965, Wessie
said something to me like, "Too bad the food at this place
is so lousy."
I laughed, and raised my eyes toward the ceiling
in an exaggerated way to draw her attention.
As she brought the next spoonful of food up to
my mouth, she noticed that I was doing something funny with my eyes,
obviously in reaction to what she had just said. I kept looking
up at the ceiling, but Wessie couldn't figure out why I was doing
that. She put the spoon down and thought for a few seconds, then
asked, "Ruthie, are you trying to tell me something?"
With a broad grin on my face, I looked at her squarely. Then I raised
my eyes up to the ceiling again in such an exaggerated way that
I thought my eyes would pop up through the top of my head.
Wessie knew that she was onto something, but she wasn't sure just
what. She pondered it for a few more seconds . . . then it clicked!
A silent conversation flashed between us as loud and clear as any
spoken words. Even before she asked me a dozen times over, and before
I exuberantly answered a dozen times with my eyes raised skyward,
Wessie knew. And I knew that she knew.
I was raising my eyes to say "Yes."
We both started laughing. Then I started laughing
really hard, and before I knew it I was crying so uncontrollably
that I couldn't see because of the tears. They were tears of pure
joy, the kind of tears a person sheds upon being released from prison
after serving three years of what she had feared would be a life