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,
