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
