Ruth was an alert, bright-eyed baby. But a bout of encephalitis when she was 5 weeks old left her severely paralyzed, unable to move anything below her neck or to control the muscles for speech. Smart and eager to communicate, she eventually worked out a simple system with her family: A curled lip meant no, an upward glance meant yes, a combination of the two meant maybe. Anyone with the patience to lead Ruth through a string of yes-and-no questions could thus ascertain that the frail child with atrophied limbs had ideas, opinions and a sense of humor.
Tragically, few of the people that Ruth Sienkiewicz-Mercer encountered while she was growing up in central Massachusetts had that patience. Placed in a series of institutions by her hard-pressed family, Ruth was wrongly diagnosed as an “imbecile” at age 6 and then treated as one for many of the next 10 nightmarish years. The staff at Belchertown (Mass.) State School, where she landed in 1962 at age 11, “thought that my yes-and-no signals were mindless gesticulations,” she recounts, “and I had no way of telling them anything different. As long as these people considered my brain useless and my facial expressions meaningless, I was doomed to remain ‘voiceless.’ ”
But thanks to her own determination and a remarkable collaboration, Ruth, now 38, has found her voice. Her memoir, I Raise My Eyes to Say Yes, arrives in bookstores this month. It was 10 years in the making, the product of nearly 2,000 hours of laborious give and take with Steven Kaplan, 36. He was a graduate student at the University of Massachusetts when he first began working with Ruth in 1979, holding up word boards for her to piece together her thoughts. Now a lawyer, married and living in Hartford, Conn., he returned to the project in 1986 after Ruth, on her own initiative, approached an editor with their first 200 pages and got a book contract.
Although the words on the page were written by Kaplan, “This was her story all the way,” he states in the book’s introduction. “Ruth’s eyes always told me if I was getting it just right, and if not, how far off I was.” Many passages—built up from a few key words and many questions—went through four or five revisions before Ruth signaled her approval.
The result is a shocking story, both sad and triumphant. Born in Northampton in 1950, Ruth spent the first six years of her childhood at home, lovingly tended by her mother, Marian Sienkiewicz. Gradually, though, the burden of caring for both Ruth and a second daughter, born healthy in 1953, began to take its toll on Marian. She was hospitalized for back problems, and her husband, Charles, decided for everyone’s benefit to send Ruth away from home. But an outside psychologist brought in by the State School in Lakeville, Mass., diagnosed Ruth as mentally retarded and sent her back home.
Ruth was then sent to the Crotched Mountain Rehabilitation Center, a private facility in New Hampshire, where she thrived. But when her father changed jobs after three years and lost some health benefits, the family couldn’t afford to keep her there. Ruth returned home to a household that now included two new children. She stayed two years before Charles decided that the strain on his ailing wife was too great and dispatched Ruth to the Belchertown State School. “We were sacrificing five people to take care of Ruth,” he says. “I did the only thing I could for the family.” Writes Ruth of this decision, “Eventually I came to understand it, but I could never accept it.”
What the Sienkiewiczes could not know was that Belchertown “had not yet emerged from the Dark Ages,” according to one state investigation. Ruth was diapered, confined to a bed and ignored amid the howls of her fellow residents. Her parents weren’t allowed to visit the ward, and when they expressed concern about Ruth’s condition on visits home, the hospital authorities brushed them off.
Ruth’s private hell went on for three years and might have continued much longer except for one incident. A nurse made a wisecrack to a colleague and noticed Ruth laughing. Astonished “that I appreciated adult humor, they started to direct comments to me instead of talking about me,” she writes. Soon they started looking for a response and asked, “Ruthie, are you trying to tell us something?” Writes Ruth: “I raised my eyes up to the ceiling with such an exaggeration that I thought my eyes would pop up to the top of my head…and I knew that she knew. I was raising my eyes to say yes.”
Overdue state reforms began to change Belchertown, and by 1970 Ruth was allowed to wear clothes and sit in a wheelchair and was taught to read. Using word boards, Ruth was able to show her intelligence. In 1976 she moved into a group home on the grounds and from there to an apartment in nearby Springfield with several other patients. Then, in 1980, Ruth married Norman Mercer, who also suffers from cerebral palsy. They live together, assisted by personal attendants.
When Ruth met Steve Kaplan a year before her marriage, she had already begun work on her autobiography. But the rapport between them made the task go much more quickly. The more he knew about her life, the easier it was for Kaplan to catch her true meaning from a few words—and to discern that she would settle for nothing less. “Ruth and I endured some exasperating sessions trying to give voice to a thought that proved particularly resistant,” he writes. But the payoff was exhilarating for them both. After listening to Kaplan read 10 pages about her childhood, Ruth—whose lifelong dream has been to speak—picked out the words I. FEEL. TALKING.
—Lucinda Smith, Dirk Mathison in Springfield