3. Built into the project would be the many reasons to capture these stories: so that they wouldn’t be lost, to inform the local community about its history, to help young parents know that there is hope, and so that story-telling could heal the political divisions that over time had formed in the disability community.
4. To go public: to bring the private struggles of these families into public view would add them to the historical record.
Postcard of the Eastern Washington State Hospital, Medical Lake, no date
Historical Summary
While the primary focus of this book is on the ways parents struggled to keep their child in the family home, or the emergent parents’ movement of the 1950s and ‘60s, historically the relationship of the family to the state institution is a complicated one. It’s entangled with changing attitudes toward mental retardation as well as ideas about education, employment, civil rights, and citizenship, and is the foundation of these stories. It is a rich and complex history I can only briefly summarize.
In the 19th century
The history of disability is replete with stories of infanticide, child abandonment, neglect, and the placement of children in asylums and orphanages, yet there are also stories of children being loved and cared for in the family home and extended community. In the early 19th century, even though there were few schools, community records indicate that some children with disabilities went to the same schoolhouses that their brothers and sisters attended. Accounts from this era also suggest that if a child could contribute in some small productive way to the livelihood of the family, or at least not become an unnecessary burden, many lived their lives within communities. (2)
In 1839 the Jeffersonian ideal of public education found a form in the common school system championed by Horace Mann. It was believed that a nation composed of growing immigrant populations must be educated. Education was a way of socializing a mass populace, with citizenship as the intended outcome. During the1840s the industrializing economy was erratic, and newcomers often had difficulty surviving. Families might break apart in a desperate search for work.
Almshouses, prisons, and orphanages grew as people struggled in cycles of poverty and employment. (3) Ignorance was considered a crime and poverty a form of deviancy. Operating in an atmosphere of uncertainty, attitudes toward mental retardation or “idiocy” also began to shift. Religious morality coupled with a pre-Darwinian concept of biological inheritance determined that the sins and social tendencies of parents were to blame for a child’s disability. (4)
In1847 Samuel Gridley Howe, an associate of Horace Mann, received state funding to, “inquire into the condition of the idiots of the commonwealth, to ascertain their numbers and whether anything can be done on their behalf.” (5) His report cited an alarming growth in their numbers as well as the suggestion that the family home might be an unfavorable environment if they were to be helped. He also wrote that the children could be “improved” through specially designed educational methods. By the following year the first school for the “feebleminded” opened in Massachusetts. The school utilized the theories of Eduard Seguin and Jean Etienne Esquirol, who believed that “idiot” children could learn through a program of moral treatment and physiological education. (6)
By1850 both the common (public) school and the state school for feebleminded children were established in Massachusetts, with subsidies from state and local governments. They shared the same goals—to prepare children to be educated citizens. One principle difference between the two systems was that children with disabilities, it was believed, could only advance in a residential school away from the influence of their families. In this setting they would be provided a “homelike” situation where they would be taught verbal skills, hygiene, and the rudiments of some useful skills so they could be returned to the community. While some did “graduate” from the “idiot” schools there was no support system for them once they returned to their communities. In the strained economy during and after the Civil War, many were sent back to the residential schools, or found themselves in worse conditions in asylums and prisons. (7)
Within the next decades the “idiot” school became primarily custodial. Less emphasis was placed on education for a life outside the institution. Although initially the schools were near urban centers, where parents might visit, many eventually moved to country settings, away from society, family, and public attention. Attitudes toward disability also changed. By the early 20th century, humanitarian ideas of educational improvement programs were replaced by eugenical ideas of containment. People with mental retardation were thought to be hereditary deviants, as having incurable illnesses, as being sexually promiscuous and dangerous to society. Sequestered in state and private facilities they were intermittently studied by doctors, psychiatrists, educators, and eugenicists. They became victims—of sterilization programs, training or work regimens, abuse, or profound neglect. While some schools maintained a level of funding that enabled programs and staff support, many operated under an economic and philosophical void. (8)
In the 20th century
Most of the early experimentation and theorizing about mental retardation and education occurred in the eastern United States, but with territorial expansion in the late 19th century the practices moved west. In 1886 a bill was introduced in the territory of Washington establishing the first school for “defective youth” in Vancouver. In 1889 Washington became a state and the following year enacted a compulsory education bill for “defective youth.” This bill required parents to register any child with a disability, and send him or her to school. The legislation, although irregularly enforced, channeled children to the state institutions. In 1907 a second state school for the “feebleminded” was opened near the Eastern State Hospital for the Insane, near Spokane. (9)
In 1935, a group of parents in Washington State formed the Children’s Benevolent League (CBL). These were parents whose children were under the care of the State Custodial School at Medical Lake near Spokane. As concerned parents they hoped to maintain contact with their children and contribute toys, books, and other materials to the school. They also helped one another cope with the difficulties of separation from their children. The parent members of the CBL were critical of declining conditions at the school during the Depression and successfully lobbied for funds to open Rainier School at Buckley—paid for in part by funds through the Works Progress Administration (WPA). The new school was also closer to Seattle and Tacoma, where many parents lived. CBL, a forerunner of the Washington ARC, successfully helped to create legislation over the next decades for expanded institutional care, but with more parental involvement.
For children with disabilities who lived with their families, special education programs were available in some public schools in the 1930s, but there were no clear guidelines for admitting children or excluding them. The administrators used the special education programs to funnel children to the state institutions. By the1950s the state/institutional system was over-crowded and there were waiting lists for admission. There were also reports—from all over the country—of inhumane treatment and deteriorating facilities in state institutions. By 1968, in Washington State, there were over four thousand children with disabilities being served in five state schools. Because of these combined conditions parents in the 1950s and ‘60s began searching for new programs and educational models. Those parents who refused to admit their children to the state institutions and began creating alternative programs in the community were often at odds with parents of institutionalized children, about the best care for a child with a disability. They also often found themselves competing for the same sources of funding. (10)
Throughout the country during the 19th and 20th centuries, advocates for children with developmental disabilities have predominantly been parents. Although at times attitudes about disabilities have led to separations of parent and child, ideas began to shift radically after World War II and in some ways to echo an earlier era. Many parents believed strongly that their children should grow up in the family home. They began to reject the advice