This is the story of Ruth Sienkiewicz Mercer who had severe cerebral palsy, hardly any movement in her limbs and no speech, for thirteen years, from the age of six to nineteen. She lay in a state institution in Baltimore in USA, treated like an object with no mind, no thoughts, no feelings, no opinions, no wishes, no dreams. Though through all these years inside this immobile and silent body her lively mind kept track of time, people, events, characters, her own emotions and development without being able to communicate any of this.
It was not until a volunteer, Stephan Kaplan, interested in the problem of the speech impaired, realized that she was bursting to say something that Ruth was ‘Discovered’ as a person. By using word boards held up in front of her and asking her to say ‘yes’ by raising her eyebrow or ‘No’ by pursing her lips, he draw from her story, word by word and line by line and set it down. The whole writing took years to complete.
Ruth’s story illustrates all the major issue raised by disability. It is about the ignorance, prejudice and fear that create the climate of hostility experienced by disabled people. But above all, it is about an empowering and liberating relationship, a relationship free of all prejudice and fear and full of understanding, which set her free.
In Stephen Kaplan’s words:
Ruth Sienkiewicz Mercer was born in 1950.
She has never spoken a word, never written or typed a sentence.
She has had very 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 bed for all of the waking hours of her life.
She has never walked, never fed herself, never combed her hair, never dressed herself.
She is a quadriplegic, a victim of cerebral palsy.
Aside from her eyes, ears, nose, digestive system and vocal cords (which can produce about ten distinct sounds) Ruth’s body is functionally useless.
Her hands could not point or gesture, her feet and legs cannot kick or support the weight of her seventy-five pound body.
Ruth has lived in virtually every situation possible for a severely handicapped person.
Ruth spent her earlier years with her deeply caring parents, two younger sisters and a 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 found the conditions at Belchertown “shocking and outrageous.”
As a result of a lawsuit initiated by the friends and relatives of the residents, 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 private apartment in Springfield.
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 Belchertown state school.
Her narrative and this book were completed in 1988.
I was introduced to Ruth in January 1979, when I was hired as a teacher for a program called f.r.e.e. – fundamental right to equal education.
This program provided individualized educational and socialization training to Ruth and the four other severely handicapped people who were Ruth’s fellow Belchertown refugees.
Although it usually convened on the campus of the University of Massachusetts in Amherst, f.r.e.e. was not affiliated with the university.
It was, and still is, run by Shelton inc., a nonprofit corporation, that provides support services to handicapped individuals.
In 1979, I had just received a master’s degree in English from u. mass. and was planning to attend law school in the fall.
One of my primary activities with the free program was to help Ruth write her autobiography.
Although she had begun working on it nearly three years earlier, only a brief outline and several pages of roughly drawn anecdotes have been completed.
From January through august, we worked on Ruth’s book several times a week.
In interview sessions that usually lasted about two hours, Ruth told me anecdotes from various times in her life, filling in the details in response to my many questions.
Ruth indicates with “yes”, “no”, or “maybe” with facial expressions.
A curled-lipped frown means “no” usually accompanied with a slight raising of her forearms.
The more pronounced the curl of her lip, the more emphatic the negative.
Raised eyes indicate “yes” often punctuated with a smile.
Ruth frequently growls, coos, sighs, chirps, yelps, chortles or even chatters her teeth to add tone to her pronouncements.
Ruth indicates “maybe” with a relatively bland hybrid of her yes and no modes.
By utilizing this limited physical repertoire, Ruth can produce verbal communication with her word boards.
These are laminated pieces of white cardboard; approximately sixteen by twenty inches, on which words, phrases and numbers, are arranged in rows and columns.
The entries are grouped by logically on each board in sections, delineated with borders of various colors.
Sections include pronouns names of prominent people in Ruth’s life, verbs, adverbs, adjectives, prepositions, interrogatives, common expressions, familiar places, things to eat, colors, articles of clothing, and several expletives.
There’s a section for the alphabet and the numbers 1 through 10.
Over the last ten years, Ruth has used two or three such boards with entries on both sides.
When we met back in 1979, her boards contained about 400 entries.
Several months later Ruth, laurel lee Jones (the first director of the f.r.e.e. program,) and I developed some new boards containing about 800 entries.
Her current board contains about 1,800 entries.
– Stephen Kaplan