Sienkiewicz-Mercer's Story

1. Developing Cerebral Palsy
   1. Enrolled in a private school
   2. Enrolled in a rehabilitation center
2. Discharged from rehabilitation center: attended a state school.
3. Leaving the state school: having freedom to make decisions

...I was suffering from Cerebral Palsy, with marked spastically in my arm and leg muscles. They [doctors] agreed that my earlier illness 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 [inflexible], and that my progress in my 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- someday (Sienkiewicz-Mercer & Kaplan, 1989, p. 2).

However, these doctors neglected to inform her parents how difficult it would be to take care of their daughter. Since the Encephalitis severely damaged Ruth's central nervous system and all of four limbs were affected, she was forced to depend on others to take care of her physical needs permanently. "Ruth has been confined to a wheelchair or a bed- ... She has never walked, never fed herself, never combed her own hair, never dressed herself"(Sienkiewicz-Mercer & Kaplan, 1989, p. vii). After receiving a brief lesson on what Cerebral Palsy was, Ruth's parents decided to get a second opinion and were referred to a Clinic for Crippled Children. This clinic specifically recommended that they should perform therapeutic exercises on a daily basis so that Ruth could physically improve.

Enrolled in First Private School

Living at the rehabilitation center for eight glorious months brought Ruth a glimmer of hope that she may be able to lead an independent, productive life. It provided an assortment of programs to meet all of the one hundred and twenty residents' individual needs. These residents had various types of physical disabilities and were all different ages.

Some of the older people there had private or semiprivate rooms, but most lived in a ward-type arrangement. I lived in an area with about thirty other females, ranging in age from four to forty. Even though it was a ward, the atmosphere was pleasant. I never felt "institutionalized" at Crotched Mountain. The fact that there were picture windows everywhere to bring the countryside in had a lot to do with this, but more important was the staff ratio: about one for every five resident[s], not counting the specialized personnel. Most important; however, was the staff's attitude. Every resident was treated with respect for his or her individual needs, from feeding and dressing to physical therapy and basic social interaction (Sienkiewicz-Mercer & Kaplan, 1989, p. 11).

The staff members quickly began to teach Ruth how to walk, speak, feed herself, and many other tasks. Nevertheless, they concluded it was too much of a struggle for her to overcome her severe physical limitations. To despite this sad news, Ruth received an academic education that helped to sharpen her mind. Being able to spell, read, write, and perform simple calculations were just a few skills that the rehabilitation center stressed. The staff also successfully taught her to communicate by blinking her eyes. For instance, if Ruth wanted to say, "yes", she would raise both of her eyes and blink once. She often bellowed ten types of sounds and made facial expressions to attempt to communicate more effectively with others (Sienkiewicz-Mercer & Kaplan, 1989).

Then, the rehabilitation center decided to send Ruth home for a two month vacation. When the vacation had terminated, she never returned to the center. Since Ruth required so much physical care, the center could no longer provide adequate staffing. Furthermore, she had no other choice, but to depend on her family to provide the necessary care. Watching television and attempting to continue the physical therapy program bored Ruth for she desperately wanted to return to the center. Spending weekdays alone with Mrs. Sienkiewicz caused Ruth to become very depressed because she missed her friends and she felt that the hope of leading a productive, successful life suddenly disappeared (Sienkiewicz-Mercer & Kaplan, 1989).

Discharged from the Rehabilitation Center: Attended a State School

There I was, alone and flat on my back in a small room with the door shut tight. ... I didn't appreciate being placed in diapers and hospital bedclothes. I had been toilet-trained at an early age, ... and needed only physical assistance to and from the bathroom. I gathered from the around-the-clock diapering that either nobody was going to pay close enough attention to me ... or the staff was unaware of my ability to control my bodily functions (Sienkiewicz-Mercer & Kaplan, 1989, p. 40).

Belchertown neglected to provide educational and therapy programs; furthermore, it succeeded at making people's lives a torture chamber. "... the attendants shoved globs of food into my mouth and expected me to swallow them in big gulps while I was flat on my back, not even propped up in a sitting position"(Sienkiewicz-Mercer & Kaplan, 1989, p. 41). This was absolutely a tragedy for Ruth was physically and emotionally abused, which made her enter into a deep depression. Refusing to eat baby food and mashed vegetables was the only way that she thought she could control the revolting situation.

I decided ... to go on strike. ... The attendants would become so exasperated with me that they would have no choice but to call my parents-" (Sienkiewicz-Mercer & Kaplan, 1989, p.42).

Going on strike only made matters worse because the attendants forced Ruth to open her mouth and the house doctor immediately recommended a different diet. Even though Mrs. Sienkiewicz was aware that Ruth lost ten pounds and was not making any progress at all, she still felt that it would be too difficult to care for Ruth at home. Then, Mrs. Sienkiewicz slowly decided she did not want Ruth to suffer anymore at Belchertown.

Father viewed things differently. He had watched Mother's health decline rapidly after I came home from Crotched Mountain. He had seen how much pressure my presence put on the rest of the family, and he had decided that sending me to Belchertown best served the interests of the family. Father was not happy with this decision, but he believed that he had no other choice (Sienkiewicz-Mercer & Kaplan, 1989, p. 72).

Moreover, Ruth had no other choice but to make the best of her nightmare predicament. After she was released from isolation, she was placed on several wards. Daydreaming to escape reality helped Ruth to stay sane. Also, making friends with the residents, who were either retarded or mentally disturbed, was impossible. However, Ruth was very fortunate to develop a close-knit relationship with a girl who also had a severe case of Cerebral Palsy and desperately wanted to run away from Belchertown (Sienkiewicz-Mercer & Kaplan, 1989).

After suffering at Belchertown for one whole year, Ruth's parents took her home for the holidays. "When I went home for Christmas, I felt like I had been released from the worst prison on earth" (Sienkiewicz-Mercer & Kaplan, 1989, p. 71). Moreover, Ruth was extremely depressed because she failed to convince her parents that Belchertown was pure Hell. Nevertheless, she was able to find courage and a sparkle of hope that she may gain control of her life, someday (Sienkiewicz-Mercer & Kaplan, 1989).

Surprisingly, Ruth received better care as soon as she returned to Belchertown and her parents were allowed to visit more often. "... my everyday life grew more tolerable as the staff learned how to deal with my physical disabilities in eating and other basic functions" (Sienkiewicz-Mercer & Kaplan, 1989, p. 76). However, she was still not benefiting from any educational, social, or therapy programs. Suddenly, the staff members tranfered Ruth to another ward. This was a sad occasion for she never saw her only best friend, again. However, discovering that a few of the new residents, who were physically disabled and mentally alert, was a blessing for the majority of them were mentally disturbed. Also, the attendants took better care of her because they began to notice that Ruth had normal intelligence, but this did not last too long (Sienkiewicz-Mercer & Kaplan, 1989)

Then, she developed a crush on a brand new temporary physical therapist who attempted to start a therapy program. Since he was not successful at creating a program, he left Belchertown. Moreover, Ruth became extremely depressed and lost eleven pounds, which was one quarter of her total body weight (Sienkiewicz-Mercer & Kaplan, 1989). Slowly, her care declined once more as Belchertown hired new, incompetent, attendants.

One of the annoying aspects of Ward 3 was the Box. This was a long table with one-foot wooden sides around the outside edge and a mattress set inside. ... for the next four years, two of these contraptions were used on the ward. Three or four girls were placed inside, side by side, for "socialization."... I was laid flat on my back [in the box] in the company of three girls whose behavior ranged from tolerable to downright dangerous (Sienkiewicz-Mercer & Kaplan, 1989, p. 96).

Observing some of the residents emotionally dying and dealing with the attendants' abusive behavior caused Ruth to lose more weight and constantly cry. This was devastating for she was forced to stay in bed or in the box for approximately five long, miserable years.

Suddenly, five years later, Belchertown hired a whole brand new staff. Moreover, Ruth not only received better treatment but she, amazingly, developed close-knit friendships with the compassionate attendants who began to communicate with her. For instance, having a conversation about how bad the food was brought tears of joy to her eyes. Ruth thought that it was a miracle to be able to express her feelings with an attendant, which felt like being released from prison on a temporary basis. The best improvement, during this time, was she finally sat in a wheelchair and received physical therapy. As a result, the therapist gave Ruth new braces and medication to relief her muscle cramps (Sienkiewicz-Mercer & Kaplan, 1989).

Nevertheless, this wonderful care and therapy sadly terminated for no logical reason; furthermore, Ruth was abused all over again. For example, her attendant, who did not take the time to perform tasks properly, quickly threw Ruth in her chair and broke her leg. Therefore, Ruth spent two weeks in the hospital recovering from a broken hip and ankle. After returning to Belchertown, the staff members provided a very limited therapy program and allowed the residents to watch television (Sienkiewicz-Mercer & Kaplan, 1989).

After a couple of more hellish years, an educational program was successfully started. Learning simple arithmetic, how to read, and spell were all skills that Ruth mastered eight years ago. Nevertheless, she had to relearn them all over again. Howard Shane was an excellent teacher because he immediately accepted Ruth's disability and clearly recognized she was intelligent by successfully communicating with her (Sienkiewicz-Mercer & Kaplan, 1989).

Then, in 1970, Belchertown began to offer a speech / hearing program to help the residents enhance their communication skills. Shane created a more efficient way for Ruth to speak. Since she learned to read on a second grade level, he designed several communication boards. A communication board was a large sheet of paper that included a variety of words, the alphabet, and numbers. Ruth had to glance at the words that she wanted to say and the other person, who was engaged in the conversation, had to follow her eyes looking across the board. Once Ruth found the appropriate words that she wanted to say, she would just look up at the person (Sienkiewicz-Mercer & Kaplan, 1989).

After this was established, Shane and several electrical engineers, from the University of Massachusetts, were able to teach her to type on an automated communication device called the Expressor. This machine was similar to a desktop computer but instead of having a keyboard, it had a diagram of the alphabet and numbers located beside a built-in screen. If Ruth wanted to type a paragraph, she had to wait until she saw a row of red lights flash on a particular row of letters or numbers. When these lights reached the correct row, she had to hit a switch that was attached to her wrist by raising her arm. Then, a single red light would move to each letter or number in that particular row. Hitting the switch, as soon as the light landed on a letter or number, made the character appear on the screen. The Expressor was terrific for Ruth had been given a voice, but it was difficult to operate. Furthermore, fourteen years later, Ruth received a voice synthesizer, which was more efficient than the Expressor (Sienkiewicz-Mercer & Kaplan, 1989).

Leaving the State School: Having the Freedom to Make Decisions

Then, Ruth moved into an apartment that was completely accessible for the physically disabled. Leaving Belchertown and Tadgell permanently was a real miracle for she never thought that her hellish nightmare would vanish. Ruth was able to choose attendants to care for her, which clearly proved that she had the freedom to lead a happier life! Once she adjusted to her apartment, she decided to marry Norman Mercer (Sienkiewicz-Mercer & Kaplan, 1989).