Ruth Sienkiewicz-Mercer
Encyclopedia
Ruth Sienkiewicz-Mercer was a quadriplegic and American disability rights activist. She is best known for her autobiography I Raise My Eyes to Say Yes, co-authored with Steven B. Kaplan.
. She was a healthy baby, but was afflicted with a severe bout of encephalitis
at the age of five weeks. At thirteen months, she was diagnosed with cerebral palsy
resulting from the encephalitis. Her control over her entire body, except for her face and digestive system, was severely impaired; though not completely paralyzed, she could not care for herself or communicate through speech as most people know it. Due to her inability to communicate normally, she was diagnosed as an imbecile
at the age of five.
She lived mostly with her family until age eleven, with some brief stays in rehabilitation centers invariably terminated by her family's poor financial situation. As she approached her teens, it became increasingly difficult for her mother and family to care for her. Her parents decided to send her to the Belchertown State School
, an institution for the mentally and physically disabled. There, like many of the institution's patients, she was severely mistreated. She spent most of the next eight years lying in bed in a ward of schizophrenics, ministered to by overworked attendants who often force-fed her and assumed that as an imbecile she had no awareness of the world around her.
A staff turnover in 1967 began to change things, as Sienkiewicz-Mercer learned to communicate with some of the new attendants and formed close friendships with them. Several attempts by the school at establishing a physical therapy and education program resulted in the development of a word board
for her, providing her with a robust method of communication for the first time.
In 1973, the massive building in which the mental wards were housed was renovated, and she was moved to a small temporary building with nineteen other high-functioning patients. The attendants there were friendly and the atmosphere far less oppressive than the wards; the patients were given greater liberty, to the extent that some were allowed to drink alcohol. With the support of many friends, she and some fellow patients left the State School and moved into their own apartment in 1978. One of these ex-patients, Norman Mercer, she married. The year after, her autobiography was published to media attention and critical acclaim.
After her departure from Belchertown, she became a disability rights activist, giving "speeches" (with the aid of an assistant and later a speech synthesizer) in cities across America. Her efforts may have contributed to the closure of Belchertown State School in 1992.
Ruth Sienkiewicz-Mercer died on August 8, 1998 at the age of forty-eight.
Biography
Sienkiewicz-Mercer was born in Northampton, MassachusettsNorthampton, Massachusetts
The city of Northampton is the county seat of Hampshire County, Massachusetts, United States. As of the 2010 census, the population of Northampton's central neighborhoods, was 28,549...
. She was a healthy baby, but was afflicted with a severe bout of encephalitis
Encephalitis
Encephalitis is an acute inflammation of the brain. Encephalitis with meningitis is known as meningoencephalitis. Symptoms include headache, fever, confusion, drowsiness, and fatigue...
at the age of five weeks. At thirteen months, she was diagnosed with cerebral palsy
Cerebral palsy
Cerebral palsy is an umbrella term encompassing a group of non-progressive, non-contagious motor conditions that cause physical disability in human development, chiefly in the various areas of body movement....
resulting from the encephalitis. Her control over her entire body, except for her face and digestive system, was severely impaired; though not completely paralyzed, she could not care for herself or communicate through speech as most people know it. Due to her inability to communicate normally, she was diagnosed as an imbecile
Imbecile
Imbecile is a term for moderate to severe mental retardation, as well as for a type of criminal. It arises from the Latin word imbecillus, meaning weak, or weak-minded. "Imbecile" was once applied to people with an IQ of 26-50, between "moron" and "idiot" .The term was further refined into mental...
at the age of five.
She lived mostly with her family until age eleven, with some brief stays in rehabilitation centers invariably terminated by her family's poor financial situation. As she approached her teens, it became increasingly difficult for her mother and family to care for her. Her parents decided to send her to the Belchertown State School
Belchertown State School
The Belchertown State School for the Feeble-Minded was established in 1922 in Belchertown, Massachusetts. It became known for inhumane conditions and poor treatment of its patients, and became the target of a series of lawsuits prior to its eventual closing in 1992...
, an institution for the mentally and physically disabled. There, like many of the institution's patients, she was severely mistreated. She spent most of the next eight years lying in bed in a ward of schizophrenics, ministered to by overworked attendants who often force-fed her and assumed that as an imbecile she had no awareness of the world around her.
A staff turnover in 1967 began to change things, as Sienkiewicz-Mercer learned to communicate with some of the new attendants and formed close friendships with them. Several attempts by the school at establishing a physical therapy and education program resulted in the development of a word board
Word board
Word board A word board or communications board is a simple means to help people who have lost the ability to speak. A word board may typically be provided to those recovering after a stroke....
for her, providing her with a robust method of communication for the first time.
In 1973, the massive building in which the mental wards were housed was renovated, and she was moved to a small temporary building with nineteen other high-functioning patients. The attendants there were friendly and the atmosphere far less oppressive than the wards; the patients were given greater liberty, to the extent that some were allowed to drink alcohol. With the support of many friends, she and some fellow patients left the State School and moved into their own apartment in 1978. One of these ex-patients, Norman Mercer, she married. The year after, her autobiography was published to media attention and critical acclaim.
After her departure from Belchertown, she became a disability rights activist, giving "speeches" (with the aid of an assistant and later a speech synthesizer) in cities across America. Her efforts may have contributed to the closure of Belchertown State School in 1992.
Ruth Sienkiewicz-Mercer died on August 8, 1998 at the age of forty-eight.