Citizenship in the Literate Community: An Ethnography of Children with down Syndrome and the Written Word

In school, children with Down syndrome have traditionally been separated from literacy opportunities and expectations (Buckley, 1995). Two premises serve as the basis for this partial or complete separation of child from printed language: (1) That reading is a curricular end-product requiring students to master a set of isolated subskills in an age-normed, linear sequence (Adams, 1990; McKenna, Robinson, & Miller, 1994); and (2) that children with Down syndrome intrinsically lack the cognitive capacity necessary tO master the literacy subskills at an age-normed pace (Cicchetti & Beeghly, 1990). Though both premises represent prevailing educational assumptions, neither is reflective of an essential reality. For instance, competing interpretations of literacy have been presented which deemphasize reading as a hierarchy of isolated subskills, and instead, focus on all children "as active sense makers" (Crawford, 1995, p. 82) who construct meaning through symbol systems in specific contexts at specific times (Crawford, 1995; Goodman, 1992; Goodman & Goodman, 1979; Harste, Woodward, & Burke, 1984; Shannon, 1990). Within this framework, separating children from literacy is not a logical consequence of the child's lack of cognitive ability; rather, it is a moral choice made when particular student-constructed meanings are misunderstood and devalued (Smith, F., 1992). Interpreting literacy as a social process in which children make sense of a particular context has educational consequences. Based on this definition, children often excluded from reading and writing have entered into literate relationships as acknowledged creators of complex symbolic language. This has occurred for children whose exclusion was race and class based (Ashton-Warner, 1963; Solsken, 1993), and disability based (Koppenhaver, Pierce, & Yoder, 1995). This study is an ethnographic exploration (Ferguson, Ferguson, & Taylor, 1992) of the meaning of literacy for children with Down syndrome in 10 preschool and elementary school classrooms. Over the course of 2 school years, it became apparent that classroom conceptualizations of reading influenced the meaning of Down syndrome, and that children with Down syndrome could influence how literacy itself was defined in particular classrooms. METHOD Theoreticel Approach This is a qualitative study conducted in an interpretivist tradition (Ferguson, Ferguson, & Taylor, 1992; Smith, J. K., 1993). Interpretivism rejects the assumption that social realities exist as objective states. Instead, ideas like Down syndrome and literacy are recognized as social constructions: culturally-bound, historically situated perspectives that are constantly being negotiated and renegotiated by individuals in interaction with one another (Ferguson et al., 1992). For instance, not so many years ago, to have Down syndrome meant that one was considered "hardly human" (Spock, 1949, p. 478) and was likely incarcerated into a custodial institution for life (Blatt, 1987). Nothing about trisonomy of the 21st chromosome inherently required this treatment, as is evidenced in the level of community participation enjoyed by many people with Down syndrome today (Nadel & Rosenthal, 1995). However, dehumanizing treatments were accepted at one time as the logical response to the differences associated with Down syndrome. In this example, it becomes clear that to understand Down syndrome may require as much a focus on the context in which the meaning of Down syndrome is constructed as on the chromosomal anomaly itself. Refocusing the researcher's gaze on context has had profound implications for both disability and literacy theory. Qualitative inquiry has influenced the rejection of custodial warehousing of people with disabilities (Blatt & Kaplan, 1966; Bogdan & Taylor, 1994) and has shown the humanness of people historically interpreted to be less-than-human (Bogdan & Taylor, 1989). …