Becoming Citizens. Susan Schwartzenberg

      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