Ruth Sienkiewicz-Mercer (September 23, 1950 – August 8, 1998) was a

quadriplegic Tetraplegia, also known as quadriplegia, is defined as the dysfunction or loss of motor and/or sensory function in the cervical area of the spinal cord. A loss of motor function can present as either weakness or paralysis leading to partial or t ...

and American

disability rights The disability rights movement is a global social movement that seeks to secure equal opportunities and equal rights for all people with disabilities. It is made up of organizations of disability activists, also known as disability advocat ...

activist. She is best known for her autobiography ''I Raise My Eyes to Say Yes'', co-authored with Steven B. Kaplan.

Biography

Sienkiewicz-Mercer was born in

Northampton, Massachusetts The city of Northampton is the county seat of Hampshire County, Massachusetts, United States. As of the 2020 census, the population of Northampton (including its outer villages, Florence and Leeds) was 29,571. Northampton is known as an acade ...

. She was a healthy baby, but had a severe bout of

encephalitis Encephalitis is inflammation of the brain. The severity can be variable with symptoms including reduction or alteration in consciousness, headache, fever, confusion, a stiff neck, and vomiting. Complications may include seizures, hallucinations, ...

at the age of five weeks. At thirteen months, she was diagnosed with

cerebral palsy Cerebral palsy (CP) is a group of movement disorders that appear in early childhood. Signs and symptoms vary among people and over time, but include poor coordination, stiff muscles, weak muscles, and tremors. There may be problems with sensa ...

resulting from the encephalitis. Her control over her entire body, except for her face and digestive system, was impaired; although 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 The term ''imbecile'' was once used by psychiatrists to denote a category of people with moderate to severe intellectual disability, as well as a type of criminal.Fernald, Walter E. (1912). ''The imbecile with criminal instincts.'' Fourth editi ...

" 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 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 even ...

, an institution for the people with intellectual or developmental disabilities. There, like many of the institution's patients, she was mistreated. She spent most of the next eight years lying in bed in a ward, ministered to by overworked attendants who often force-fed 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 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. In 1973, the massive building housing the mental wards was renovated, and she was moved to a small temporary building with nineteen other 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

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.

Wordboards

Sienkiewicz-Mercer used four wordboards to communicate with her staff, friends and the general public. The assistant would hold the boards where Sienkiewicz-Mercer could see them and then point to and speak aloud the word Sienkiewicz-Mercer indicated with her eyes. In this way, sentences, paragraphs and an entire book were created.

Death

Ruth Sienkiewicz-Mercer died in

on August 8, 1998, aged 47.

References and bibliography

{{DEFAULTSORT:Sienkiewicz-Mercer, Ruth 1950 births 1998 deaths People with tetraplegia People with cerebral palsy American disability rights activists American writers with disabilities People from Northampton, Massachusetts Place of death missing American activists with disabilities