Читать книгу Becoming Citizens - Susan Schwartzenberg - Страница 9
ОглавлениеIntroduction
“If you talk to someone, suddenly they might say, “Oh I have a niece, or a brother, or cousin, or I have a friend. Everyone has this experience but they don’t want to talk about it.” —Delia Cano
Beginnings
My first meeting with the Seattle Family Network (SFN) was a potluck. We went around the table and each member of the SFN described their reasons for wanting to tell the stories of the “senior families” in their community. These were parents who had raised children with developmental disabilities during the post World War II era. “We have stories—personal experiences that people don’t know about—stories that at one time were kept secret, but now people want to talk.” The conversation was bewildering at first. Each person’s reason for wanting to tell these stories of the previous generation, and their own personal story were intertwined. Every member of the group at the table was a caregiver for a family member with a significant cognitive disability. (1) I learned that every family who has a child and/or an adult with a developmental disability struggles daily with complex issues. They must work to secure a variety of social services, financial assistance, and appropriate medical care. They advocate for meaningful educational opportunities, recreation, jobs, and housing. They are subject to whims in the economy and privately tremble when new public officials are elected, not to mention the variety of emotional and personal experiences they must continuously work through. Yet they assured me their lives were easy compared to the generation before.
The World War II generation are often called the pioneering parent advocates. Invisible to most of us, they rode a wave of social and human rights activism during the postwar decades, activism that transformed life in America. A quiet undercurrent of the civil rights movement, their first act was to challenge their doctors and pediatricians by saying, “No, I will not institutionalize my child.” Nor would they abandon their children to the jurisdiction of the medical/professional establishment.
When I was first offered the project, I wasn’t sure it was right for me. I’m interested in stories about the unrecognized—how people struggle to realize a purposeful existence in the face of considerable hardship. But disability, it seemed, was a painful story and with no end. It also felt as if I was being hurled into the center of a drama, where the emotions were so high I feared I could never make sense of it. Yet the more I listened, the more the experiences began to sound familiar. Six months earlier my mother, who was 82 and diabetic, had her second stroke. She had short–and long–term memory impairment, problems with attention and concentrating. She was bewildered and angry. We were told she could no longer live alone and were advised to place her in a nursing home or an assisted living facility. Though her story is about senior–care, the experiences of my brother and I caring for her until her death in 2004 paralleled the stories in this project. We kept her in her own home but agonized over finding the right caregivers. We began a search for doctors, medications, and therapies. We pored over legal documents about trusts, wills, and the multiple powers of attorney one needs. We entered the labyrinth of insurance policies, Medicare, and the modern health care system. We traveled regularly to the emergency room and struggled with personal care issues we were untrained for. Every time we took her out shopping or to a restaurant, I was surprised that even though the Americans with Disabilities Act was passed in 1990 there were few public places that felt comfortable for her to be in. The world was too big, too busy, and there was almost nowhere she could walk comfortably. My personal world, as I tried to learn how to be a caregiver for my own family member, began to mirror the stories in this project.
While my family experience would last but a few years, the stories in Becoming Citizens were many decades long and are still unfolding. As I spent that first afternoon with the SFN, listening and thinking, the scope of the project began to emerge. This was a story of mothers and fathers optimistically starting new lives and families in a postwar economy with economic opportunities they couldn’t have imagined a decade before. Then a child was born whose very existence, they were told, would disrupt their chance for a better life. Unwilling and unable to accept the idea that the child should be given up—or that they should give up on this child—they pushed forward. The conversation that day went from anger to tears over funny and sometimes outrageous stories about home life and moms as bake-sale activists. Mothers would describe baking cakes and cookies to raise money for programs 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 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 of the “authoritative professional,” and they came to insist that their children should have the same opportunities non-disabled children enjoyed. The normalization movement popularized by Wolf Wolfensberger in the mid 1960s, as well as the Kennedy family’s public admission that they were a family with a disability, gave parents new hope and an ideology. To parents, normalization meant, not that their children would be changed and made “normal,” but that society would change and learn to accept, include, and appreciate their kids for who they were.
The Education for All Handicapped Children Act of 1975 not only provides a public education for every child with a disability in his or her community, it has had a profound influence on the decline of the state institutional system. Many parents could have their children at home and attending school in their local communities—as some described it, “Our children have at last somewhere they can be.”
Building a Narrative – January 2002-2004
The project did not originate from a research question, but from spending time with a community. I live in San Francisco, so I traveled to Seattle every two or three months. I stayed in the homes of the members of the SFN and participated in many events and gatherings. We went to advocacy meetings and family circles and met with various professionals, from social workers to administrators in the field of disability. I visited group homes and was given a tour of Fircrest, a state facility in Seattle for people with developmental disabilities, which opened in 1959. We had community potlucks and we organized a history work group. We also conducted preliminary interviews and developed a working prototype of stories for people to discuss and critique.
The families selected were pre-interviewed by the SFN. We chose families with a range of personal experiences. Though some people preferred privacy, harboring old fears that harm or ridicule might come to them should their story be made public, most were very willing to participate. We also asked that they gather photographs, mementos, and any other materials from their personal collections that they thought might help us understand their family life. Stories often do not have convenient beginnings or endings, so the meetings were conversations rather than formal interviews. Often the family, or in many cases it was the mother we spoke with, had something she had been thinking about—conversations began to flow the minute we entered the home. We developed the following question “areas,” or territories of conversation.
How did you learn of your child’s disability and what did you do?
I wanted to learn the scope of the family’s experiences, how they felt and how they made the decision to keep their child at home, even though in most cases they were advised to place the child in a state or private facility. Many parents were told their child’s prospects were dismal. They were told the child would not learn or develop and that this child would also disrupt the possibility for a normal family life—the disability would adversely affect their other children and themselves. Most describe being bewildered. It became evident that knowledge about developmental disabilities was haphazard.
The parents characterized the doctors as having little experience and the profession as a whole as having no “procedures” in place for helping them. Yet many of the recollections also included at least one doctor or nurse who honestly said, “We don’t really know how your child will progress—each child is different.” Parents were given contradictory information and many were also advised to bring the child home and treat him/her like their other children. Their stories convey a sense of confusion and isolation. For almost every mother interviewed, retelling the story of how she was told of her child’s disability was a profound reexperience of it. While some families chose to keep their child on the basis of religious conviction or fear of “institutions,” most describe an almost gut sense that a life in the family home could somehow make a difference.
Collage by Katie Dolan made from news fragments in 1950. 1950 Baby Crop Means Big Business, Seattle Post Intelligencer, July 26, p. 5B; photograph by John M. Miller
Two families in the project initially kept their child at home, but the severity of the child’s disability and specific family circumstances influenced them to search for different options. In both cases they were advised to place their child at Fircrest though there was a period of time on a “wait list.” Once the children were admitted, many family members maintained contact with their child, and the mothers of both children placed at Fircrest joined the parent advocacy group, Friends of Fircrest.
I asked them to describe the particular form of the child’s developmental disability. The conditions include Down Syndrome, Cerebral palsy, autism, epilepsy, and conditions caused by oxygen deprivation at birth, fevers, flu, spinal meningitis, and sometimes the causes were not known. While this book does not center on the reasons for the disability, or how it occured, every story provides some description by the parent, although knowledge was scant and often unavailable. While some parents embarked on their own research, others went from doctor to doctor, or searched for schools or special medical care. For most, and eventually all, the condition itself became irrelevant. Parents chose to concentrate their efforts on what they could do for the child socially. They searched for ways they could provide a “meaningful” life. They learned to see that child as a person and not as a disability. For many parents this was a pivotal moment, both in their home life and for getting involved in political actions.
What was your family life like?
The families describe how there were almost no services or programs to help them learn how to care for their “mentally retarded child.” Some parents found an encouraging doctor, and some mention being visited in the home by social service workers. But most often they described how other family members, neighbors, and acquaintances helped them cope and find answers to their questions. Two mothers describe how a relative got them to recognize the disability and the task at hand. Another mother described an appointment with a neurologist, who said to her, “If you don’t toilet train this child…,” prompting her to realize what no other professional had even suggested: that it was possible for her daughter to learn. Most describe learning from within their own home-life context—with many of the family members participating in caring for the child with a disability as well as taking on extra responsibilities in the household.
While most people presented the positive experiences in the home there were also descriptions of feelings of shame and distancing from the child with a disability. Some describe strains on the marriage, fears of society, and psychological stress. One family member described how the family never expressed love for one another—all their love was focused on his brother. While some families turned inward, others, in reaction to so little information and so few services, started their own networks, organizing mothers groups to help new families prepare for the years ahead. Eventually many parents joined the Washington Association for Retarded Citizens (ARC) and/or other local and national disability organizations—their participation helped to form the national networks.
Describe your child’s personality.
Every person with a disability in this project was born before 1965. Most are in their forties and early fifties. Of the now thirteen adults I was able to include the voices of all who were comfortable with spoken language. In almost every family interview they were present. I asked every family what special things they did as a family because of the interests of the child with a disability. How did they communicate with the child? Did they develop special ways of communicating? I attempted to create an existential picture of the person from within the family context. In many family descriptions the child with a disability was at the very center of family life—literally wedged between the other children in the snapshots of family events. Many times the family members described how important the experience of their sibling was to their way of thinking about life. In fact, some siblings grew up to work in the fields of disability and social work. In three of the stories the person with a disability had died in adulthood.
What educational opportunities were available to your child?
All the parents described the lack of educational opportunities and the ways their children were discriminated against. Many parents described almost a quest in their search for meaningful programs. I wondered what the parents learned about the ways their child learned. Often they described how the other children in the family coached their brother or sister. I was curious about the intuitive educational processes that parents may have tried. Almost all described the ways their children were smarter than anyone had led them to believe. Some searched for classes, special teachers or trainers, or reached out to other mothers and started community playgroups. I asked what social experiences the family had in the neighborhood or with the local institutions. Did they bring their children to public schools? If so what happened? For many, this became the key issue that motivated them—exclusion from schools, churches, community groups, and social services.
Were you involved in advocacy or political actions?
I asked the parents to describe how lack of meaningful programs drove them to start their own schools and parent groups and eventually advocate for educational rights. How did the parents get involved with a community of people who were concerned with disability issues? What did they consider activism? Did they think of themselves as activists? Would they have been involved in “political” work if their child did not have a disability? How did they go from unsuspecting parent to parent advocate? Every story describes some form of advocacy work and the various ways parents described their activism, from baking cakes and forming mother’s guilds to writing letters to congressmen and attending demonstrations at the state capitol. Many also described themselves as nonpolitical. One mother said, when asked this question, “I guess I had to have a reason to be an activist.” While it was not the intention of this project to study feminism and activism, it was another story lurking below the surface. Many of the “mothers” had defense related jobs during the war years, or had traveled across the country to secure jobs or an education. During the 1950s many women became homemakers, oftentimes reluctantly. Although their frustration in dealing with a system that excluded their child and the child’s welfare motivated them, many mothers said they also identified with and felt encouraged by the women’s movement. Many parents also identified strongly with the civil rights movement. Some expressed a feeling of optimism after World War II, which encouraged them to try and to make things happen for all their children.
Reflections on the past and future visions.
Every parent was asked to reflect on whether the world today is a different place for people with disabilities—and to envision the future. While most agreed that advances had been made in education, housing, and public attitudes toward disability, almost all had apprehensions for the future. They fear a change in attitude, which might affect public policy and funding for much needed community services and facilities. Their experience has taught them that when the economy suffers the first programs to be cut are those for people with disabilities. They all described their struggle as ongoing.
Family background
I asked each family where they were from and how long they had lived in Seattle. I was interested in the parents’ professional backgrounds and their awareness of their economic prospects in the 1950s and ‘60s. I also asked how the parents had met and what, if any, wartime experiences they had. Over half of the families migrated from elsewhere, choosing the Northwest because of economic opportunity. Almost all of the parents met and married during the war years or just after. Disability cuts across class and economic boundaries, so the entire group represents a range of economic and social backgrounds. To allow the stories to flow and center on the disability experience, I included information on the family background selectively in the text of the story and alluded to it in the selection of photographs.
The Book’s Organization
All the family interviews meandered through the same question areas, although the book is organized into five sections. Each section emphasizes a separate theme.
“About Children” presents the family situation. It is organized chronologically, with the first child in the book being born in 1936. It concentrates on how the families came to know of their child’s disability, how they coped, and the choices they made. The stories also chronicle the child’s life experience. This section also includes two families who placed their child in institutional care and the circumstances that led them to the decision. The individuals interviewed are Marcella Nelson and her daughters Linda Nelson and Nina Seaberg, Katie Dolan, Mary and Susan Saffioles, Helen Pym, and Joan Werner.
“About Schools” concentrates on the ways parents became motivated to search for and create educational programs for their children. It also gives a picture of the ways the parents went from isolation to grass-roots activism. Janet Taggart and Evelyn Chapman are two of the four mothers who authored Education for All. Mary Hiramatsu was a teacher in one of the first parent-run schools. Robert Bass was a civil rights advocate and school principal who championed desegregation for both Black Americans and handicapped children. Nadean Bass was an educator and active in the Seattle Mother’s Guilds.
“Education for All” chronicles the passage of the 1971 Washington State law that served as a precursor to the federal Education for All Handicapped Children Act in 1975 (IDEA, 1990). It describes how Cecile Lindquist, Evelyn Chapman, Janet Taggart, and Katie Dolan emerged from a grassroots national movement of parents advocating for their children’s rights. They describe how they built their connections in the community, how they learned to strategize, research, write, and utilize each of their unique skills to author and lobby successfully for a piece of legislation. It also includes reflections by disability lawyer William Dussault—enlisted to work on the committee when he was a law student—on the history of discrimination against people with disabilities in America.
“About Citizens” concentrates on adults with disabilities—where they live, their jobs, how they function in everyday life, and their prospects for the future. In this section the parents and family members reflect upon the many achievements for people with disabilities of the past 50 years—in education, work, housing, transportation, and personal achievement. They also reflect on the growth of the disability movement and the work yet to be done. The individuals interviewed are Vivian and Marie Strausbaugh, Doreen and Lance Peake, Myrtle, Bob, and Sherry McNary, and Dorothy, Dwight, and Sharon Gowdey. The family stories end with Sharon Gowdey reflecting on her life, work, and future.
The timeline enfolding the body of the book is a visual contemplation of the connectedness of official and unofficial histories. It is a conceptual visualization of the historical process. It sets experienced history—imagery developed during a community/history workshop—within a web of historical events, philosophies, and political movements. It suggests the entangled nature of history and everyday life. It also encourages the idea that the disability experience is a core element of the ongoing struggle for liberty and citizenship.
Visual Documents/The Family Archive
The story, and politics, of this community begin in the very space of domestic life. Families were interviewed in their homes. Each chapter is a braided narrative combining recollections of individual experience, photographs, and selections from the family’s private collection of snapshots, articles, letters, institutional documents, and mementos. Families were invited to share any piece of “personal history” they thought relevant to retell the story of life with a child with a disability. Often I was given a tour of the home from the perspective of where photos were placed on the wall, in a hallway or room, or taped to a refrigerator. Family collections come in interesting packages: paper bags, shoe boxes, albums, drawers—they were pulled from closets, garages, attics, or directly from the wall or dresser where they were being displayed. Sometimes they were organized and labeled, mostly they were not. Many times materials were sent to me later and often I was invited to return when an article or album was discovered that “might help me.” While I combined my investigations with readings on many related topics including the history of disability, disability studies, and education, this document’s “presentation” concentrates on the materials and recollections the families provided me. I am interested in the ways every household is a repository of past experiences—an “informal” archive of past and present intermingled. I was also interested in ways I might elevate this informal method of retrieving information—directly from the domestic space where it was enacted—and reassemble it as a flow of historical knowledge.
While human memory is fraught with inaccuracy, distortion and subjectivity, many of the details within each individual’s telling were reinforced through the collection as a whole. (11) Facts, fictions, knowing and not-knowing, hope and regret are the strange material of everyday life. Pieces of the story were told in different ways. Sometimes images reinforced a person’s description, but more often images and words seem to conjure up or suggest a way of understanding that neither could have done alone. Images and texts were considered equally as pieces of information—sometimes intended to provoke one another. While the book is “constructed,” the selection process was guided by listening to the story over and over until essential and disparate threads could be woven together.
Citizens
Through these stories I saw a matrix of ideas flooding society during the past century. While the social contract philosophers (Rousseau and Locke) first articulated the theoretical underpinnings of modern democrary—in their writings on equality, education, and human rights—in the 18th century, the ideas became fiercely public in America during the civil rights movement. Ideals of human equality penetrated daily life and influenced many tangential but equally vibrant social movements. Non-feminist mothers often cited an awareness that the women’s movement helped make them able to speak out. What was due to Black Americans—equal education rights for their children—should translate for children with disabilities. People were subtly infused with a spirit of civil disobedience from the civil rights, antiwar, labor, and environmental movements.
Becoming Citizens is a set of stories in the struggle for disability rights in America. It is also a study of ordinary life and the multiple expressions of citizenship. It was born from conversations and an attempt to unravel the ways ideas turn into action: how a private experience can first isolate and then galvanize people, bringing their shared experiences into public view. It is about how unsuspecting individuals can be motivated to achieve the remarkable then slip back into oblivion. The project is not an analysis, but a “landscape of experiences” where the story streams of disability, education, politics, and the dream of civil rights flow together. Also embodied in these family narratives and photographs is an image of the “normalization movement,” an emergent paradigm of the 1960s, which places the person with disabilities into the mainstream of daily life, requiring all of us to rethink our ideas of the “normal.” (12) The citizens of the title are the persons with disability, their parents and family members turned political activists—and all of us who must learn to live in the world co-existing with people of differing capabilities, cultures, and politics.
Notes
1. Disability activists and theorists in disability studies have initiated a thought-provoking dialogue challenging the language and definitions used to describe people with disabilities or differing capabilities. The label used to describe any individual in society influences how one is seen and treated. Establishing respectful names for groups of people has become a highly charged and politicized aspect of contemporary life. I use the term “cognitive disability” or “intellectual disability” occasionally to remind readers that the people in this book have a disability where their thinking processes have been affected. The phrase developmental disability has a specific definition within the field. (Please see glossary.) Throughout this book, the contemporary phrase “people (or child or person) with disabilities” is used when talking about people today, however mental retardation is used in historical references. Many of the parents, in the 1950s and ‘60s used the conventional phrase of their times—“mental retardation” and still converse informally using this term. In the introductory sections of the book the currently agreed-upon phrase, person with a developmental disability, is used, while in the heart of the family stories the informal phrasing of mental retardation remains. For a compelling discussion on the use of language in disability politics see, Simi Linton, Claiming Disability: Knowledge and Identity (New York: New York University Press, 1998) pp. 8–33
2. In an article by Penny L. Richards, she writes that according to popular records in the early 19th century often children with disabilities were integrated into family life. She also cites examples of the ways children might learn useful skills and participate with chores in the home. Richards argues for a more thorough excavation of “vernacular” histories. On the history of mental retardation she writes, “An emphasis on the professional—on policies and theories and, on institutions and their practices—has left the personal and private, and the popular unexplored.” See Penny L. Richards, “Beside Her Sat Her Idiot Child,” Stephen Noll and James Trent eds., Mental Retardation in America: A Historical Reader (New York: New York University Press, 2004) pp. 65–84
3. Immigrants, people with disabilities, the insane, and the poor were often grouped together and feared during times of economic instability. Phil Ferguson, in an article on almshouses in the 19th century, points out that social welfare programs and their tangential institutions—almshouses, orphanages, prisons, asylums, and hospitals—are an integral thread in the study of disability in the 19th century and their relationship to emergent capitalism. Philip M. Ferguson, “The Legacy of the Almshouse,” Stephen Noll and James Trent, eds., Mental Retardation in America: A Historical Reader (New York: New York University Press, 2004) pp. 40–64. Also see Irving Goffman, Asylums: Essays on the Social Situation of Mental Patients and other Inmates (New York: Anchor/Doubleday Books, 1961); and Michel Foucault, Madness and Civilization: A History of Insanity in the Age of Reason (New York: Random House, 1965).
4. Many of the assertions that parents could not appropriately care for, or were to blame for their child’s disability were brought on by the temperance movement of the 19th century. Inadequacies of the individual were thought to be the root of social problems. Early in the 19th century theories about an individual’s social ranking were determined by the mixing of religious morality and biological inheritance. Later in the century they were generated by the intertwining of social theory—Herbert Spencer/social darwinism and Francis Galton/eugenics—with biological theory—Charles Darwin/evolution. See James Trent, Inventing the Feeble Mind: A History of Mental Retardation in America (Berkeley: University of California Press, 1994); Wolf Wolfensberger, The Origin and Nature of Our Institutional Models (Syracuse: Human Policy Press, 1975).
5. Samuel Gridley Howe, “Report made to the Legislature of Massachusetts, 1848,” reprinted in James Trent, Inventing the Feeble Mind: A History of Mental Retardation in America (Berkeley: University of California Press, 1994) pp. 23–26.
6. It was during the French Revolution that “enlightened” doctors first began to investigate the behavior and treatment of patients who were considered “lunatics” or “idiots” and were confined to prison/hospitals. Philip Pinel is sited as the first doctor to notice that the behavior of the inmates of the Bicetré prison of Paris could be influenced by exercise, light, and good food—or humane treatment. The “prisoners” he discovered responded to these treatments—their health improved and often they stopped behaving like madmen or criminals. Pinel was both a mathematician and doctor who had studied Rousseau. It was in 1793 during the revolution that he first unchained his “patients.” Some he wrote had been shackled in their cells for 30 years. Eduard Seguin was a student of Pinel and like Pinel was influenced by the writings of Rousseau, Locke, and Condillac—on the nature of man and society, and the role of education. While these early educators/doctors had differing opinions about whether or not “idiot” children could learn, they were the first to explore the possibilities. For a theoretical discussion on the ideas of Philip Pinel see Michel Foucault, Madness and Civilization: A History of Insanity in the Age of Reason (New York: Random House, 1965). For an interesting discussion on the educational ideas of Eduard Seguin, see James Trent, Inventing the Feeble Mind: A History of Mental Retardation in America (Berkeley: University of California Press, 1994) pp. 40–59.
7. Sarah Mondale and Sarah B. Patton, School: The Story of American Public Education (Boston, Beacon Press, 2001); James Trent, Inventing the Feeble Mind: A History of Mental Retardation in America (Berkeley: University of California Press, 1994).
8. For a more thorough description of the change in attitude toward mental retardation in the late 19th century, and the remarkable transformation in thinking of the early education “humanitarians,” see James Trent, Inventing the Feeble Mind: A History of Mental Retardation in America (Berkeley, University of California Press, 1994). For a description of the ways these philosophical shifts manifested themselves in the design of care, the architecture, and ultimately their embodiment in the state institutional system, see Wolf Wolfensberger, The Origin and Nature of Our Institutional Models (Syracuse: Human Policy Press, 1975). Also see Irving Goffman, Asylums: Essays on the Social Situation of Mental Patients and Other Inmates (New (York: Anchor/Doubleday Books, 1961).
9. The compulsory education bill for feebleminded children was repealed in 1957. Even though it was irregularly enforced, the Washington State Archive has long lists of children with disabilities from that era. In the early 20th century people with disabilities were stigmatized and eugenic sterilization laws were enforced in Washington State to control the spread of the “feebleminded.” Parents often hid their children at home, or relinquished them to the state institutions. Numerous investigations of state facilities between 1880 to well into the 1960s found them under-staffed and overcrowded—often with people being abused and living in subhuman conditions. Wolf Wolfensberger, The Origin and Nature of Our Institutional Models (Syracuse: (Human Policy Press, 1975). See also Burton Blatt and Fred Kaplan, Christmas in Purgatory: A Photographic Essay on Mental Retardation (Syracuse: Human Policy Press, 1975, originally published in 1966); and Barbara Brecheen, Developmental Disablilties Services: An Historical Outline 1861-1980 (Olympia: Publication of the Division of Developmental Disablilties).
10. For a history of the Washington ARC and their early advocacy activities see Larry A. Jones and Phyllis A. Barnes, Doing Justice: A History of the Association for Retarded Citizens of Washington (Olympia: ARC of Washington, 1987); and Larry A. Jones, Phyllis A. Barnes, and Russell Hollander, “Our Brothers’ Keepers: The Story of Human Services in Washington,” 1853-1937.” Columbia Spring 1989.
11. I made no accurate count of the materials I looked through, though I estimate over 2,000 pieces of visual information—photos, snapshots, articles, and other documents. I have over 40 hours of interviews—800 pages of transcriptions, documentation and notes.
12. Normalization was an idea first articulated by Scandinavian activists Gunnar and Rosemary Dybwad. Wolf Wolfensberger, in his influential book, The Principle of Normalization (Toronto: National Institute on Retardation, 1972), promoted de-institutionalization and normalization—bringing people out of the state institutions and into the mainstream of daily life. This idea became a guidepost for many parents during the ‘60s and ‘70s.
