and schools, or cooking fabulous meals to influence a senator about a piece of disability legislation. I also realized that the children who were kept out of the institution were my age. They were my peers. But where were they? I don’t remember seeing them in grade school or high school.
Here were mothers turned activists over a cup of coffee—the first moment they had to themselves after organizing a local playschool when their kids were denied access to the public school system. Then 15 years later four of them would become leaders in a grassroots effort to enact a piece of federal legislation that would transform public education in America. This was a story both about missing children and the making of a grass-roots movement that exploded nationally, passing significant legislation on education, housing, and social services, and contributing to the passage of the Americans with Disabilities Act in 1990. These were mothers and fathers as the unsuspecting designers of a new society for people with developmental disabilities.
We ate, talked, and laughed together, and many cried that afternoon of our first meeting. I soon learned that these were the emotions I should expect at the many meetings this project entailed. But just before we cleared the table and parted that day we identified four major ideas that became essential to the project.
1. We would interview and photograph at least ten families to tell the primary story of what families with a child with a developmental disability experienced between 1940 and 1980.
2. Within the stories we would chronicle the passage of the education law, first in Washington State, and then show how it and other actions all over the country led to the passage of the federal legislation. Within this chronicle we would also profile the four mother activists.
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
