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

Christopher Kliewer, Ph.D.
Assistant Professor, Department of Special Education
150A S.E.C.
University of Northern Iowa
Cedar Falls, IA 50614
Exceptional Children, Vol. 64, No. 2, Winter 1998, pp. 167-180
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ABSTRACT: In school, children with Down syndrome have historically been separated from literacy opportunities and expectations. In this ethnography, the school literacy experiences of 10 student's with Down syndrome were examined over a 2-year period. Two broad definitions of literacy were uncovered. The first regarded reading as conformity to a hierarchy of psychologically-deduced subskills. Children with Down syndrome had difficulty conforming and were separated from Citizenship in the classrooms' literate communities. The second definition regarded literacy as the construction of shared meaning in specific contexts. In these classrooms, students with Down syndrome were valued as symbolic beings and engaged literacy as a communication tool. The implications for reconceptualizing Down syndrome are discussed.

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, 1993, p. 82) who construct meaning through symbol systems in specific contexts at specific times (Crawford, 199; 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 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.


Theoretical 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). Ethnographic research has also opened up whole new interpretations of literacy development reflected, for example, in "emergent literacy" first described naturalistically by Marie Clay (Clay, 1967; Teale & Sulzby, 1986).

Recognizing that reality is "a multiple set of contextually-bound social constructions" requires that the researcher enter into the relationships in which people create and enact meaning (Bogdan & Biklen, 1992). Therefore, in order to understand literacy in relation to children with Down syndrome, I followed the school lives of 10 students with Down syndrome across 12 classrooms over a 2-year period.

Settings and Participants

Originally, the settings were chosen out of an interest in the meaning of Down syndrome in classrooms that included children without disabilities. Literacy quickly emerged as an important school theme differentiating students into separate categories. With an invigorated focus on literacy, the principle of theoretical sampling (Glaser & Strauss, 1967) led to the inclusion of other settings that would develop insight into the understanding of printed language in the lives of children with Down syndrome. Table 1 describes the settings and participants.

Table 1
Summary of the Research Settings and Participants a
Students Teachers b Classmates Perceived Literary Level
Age Grade No. Assistants   No. Student Teachers   No. Nondisabled   No. Disabled  Teachers Psychologist
L. Larson C. Madison  
9 FT 2nd 2 1 24 3 Average Moderate MR/Illiterate
M. Jersey J. McClanahan  
10 5th/6th LD 1 - - 12 Semiliterate
S. Loveland J. Lyle & S. O'Malley  
9 PT SPED. PT 2nd 2 1 - 8 Average Severe MR/Illiterate
J. Sylvester M. Baily R. Collins  
9 FT 2nd 1 - 28 5 Illiterate
I. Johnson B. Chandler L. Morgan  
2 Toddler Rm. 1 - 5 5 Semiliterate Illiterate
I. Johnson S. Robbins  
3 ¾-yr.-old Pre-K 2 1 10 6 Average Illiterate
L. Kelly B. Chandler L. Morgan  
2 Toddler Rm. 1 - 5 5 Average
L. Kelly S. Robbins  
3 ¾-yr.-old Pre-K 2 1 10 6 Average
A. Carpenter S. Robbins  
3 ¾-yr.-old Pre-K 2 1 10 6 Average Semiliterate
G. Lafrey D. Jorgenson  
4 4-yr.-old Pre-K 2 - 6 6 Semiliterate
V. Schroeder D. Jorgenson  
4 4-yr.-old Pre-K 2 - 6 6 Illiterate
J. Frederickson J. A. Latoya  
4 4-yr.-old Pre-K 2 - 6 6 Semiliterate
Note: FT = Full time; PT = Part time.
aAll names have been changed to protect confidentiality. bTeacher in charge.

Data Collection and Analysis

In the tradition of qualitative research, data took the form of richly descriptive field notes and transcripts based on participant observation and in-depth interview's with members of each setting (Bogdan & Biklen, 1992; Denzin & Lincoln, 1994). Over the course of 2 school years, I conducted and tape recorded 45 observations and 12 interviews, resulting in 1,300 pages of field notes. The notes reflected detailed accounts of the interactions observed in multiple classrooms as children and teachers constructed meaning in their everyday lives.

As field notes and observations accumulated, particular patterns of understanding began to emerge within and across settings. These patterns formed primary codes and subcodes through which data were constantly organized, reorganized, and analyzed (Bogdan & Biklen, 1992). Ultimately, I arrived at seven primary codes related to literacy which are later described as interrelated themes. The seven codes included the following:

  1. Direct classroom imposed illiteracy.
  2. Indirect classroom imposed illiteracy.
  3. Interpreting behavior as illiterate.
  4. Direct support of literacy acquisition.
  5. Indirect support of literacy acquisition.
  6. Assumption of literacy in student behavior.
  7. Literacy as negotiation tool.
For further clarification, Table 2 demonstrates the second level of analysis (among several levels) imposed on one primary code, and provides a brief data vignette related to the primary code.

Table 2
Primary Code Analysis Second Stage
Primary Code    Secondary Codes Data Vignette
Direct Classroom Imposed Illiteracy
  1. Reading lesson separation
  2. Other content area separation
  3. Denial of material
  4. In-lesson reduced expectation
  5. In-lesson no expectation
  6. Lesson participation requiring speech/no accomodation
  7. Lesson participation requiring fine motor/no accomodation
Mrs. O'Malley looked at the clock, "O.K. kids," she said. "Put away your books and I want to see your spelling." Shelly L. had just entered the room from her self-contained class (a). She sat at the empty desk assigned to her (c), and Diane, her assistant, pulled up a chair. Mrs. O'Malley said, "Nice to see you Shelly. Kids are getting to spelling. Diane, why don't you have Shelly spend this time at the computer?" (a) Diane takes Shelly's hand, and they sit at the computer. Diane chooses a program that creates intricate designs that move when Shelly touches the mouse (a, c, d).

Data Credibility Procedures

Efforts to achieve credibility of the themes presented include both qualitative triangulation (Bogdan & Taylor, 1982; Denzin, 1978; Janesick, 1994) and meeting criteria of data trustworthiness (Kincheloe & McLaren, 1994; Lincoln & Cuba, 1985). Triangulation assures a thorough analysis of the contexts studied through the extensive and long-term use of multiple ethnographic methods and data sources. Triangulation leads to trustworthiness when the empirical portrayals of the constructed realities are descriptively credible to both the study's participants and the research audience. In studying literacy and children with Down syndrome, the following data checks were employed to assure credibility:


Definitions of Literacy

In the classrooms observed, two broad definitions of literacy were evident, each with implications for positioning children with Down syndrome as literate, semiliterate, or illiterate. The first conceptualized literacy as one strand of a linear curriculum requiring student conformity to an objectively identified sequence of technical skills or cognitive concepts. The second defined literacy as the construction of meaning in an evolving web of relationships connecting students, teachers, and classroom materials.

Literacy as Conformity

Several classrooms observed defined literacy as student conformity to a sequence of isolated subskills either transmitted directly by teachers or discovered by children in teacher-contrived activities. Students' literacy was judged by measuring the degree of conformity demonstrated through written work and tests, completed workbook pages, oral discussion, oral reading, teacher-structured play, or developmental assessments.

The Dilemma of Conformity for Students with Down Syndrome

For students with Down syndrome, requiring conformity placed them at a distinct disadvantage for inclusion into the literate community. Each child with Down syndrome in this study exhibited idiosyncratic communication and behavior that, when viewed through the cultural lens of Down syndrome as an automatic cognitive impairment, made the child appear intellectually incompetent.

Communication and Behavior Separating Students with Down Syndrome.

Joanna Sylvester's (all names have been changed to protect confidentiality) speech and movement control looked very different from that of her classmates' who participated in a three-tiered reading instruction format. Each tier was represented by a single reading group composed of children thought to be reading and writing at a particular level.

Joanna was nonspeaking. Her movements were slow and awkward. When she walked, Joanna alternated attention between moving her limbs and avoiding obstacles. She formed a fist to grasp a pencil, and had difficulty regulating the pressure necessary to write. Her papers ended up ripped and uninterpretable.

Joanna's movement and speech did not conform to traditional expectations for student competence in reading. In turn, she was separated with four peers into a "print awareness" group which meant listening to the assistant teacher read a book, and then doing a daily coloring activity. Joanna colored poorly, and was regarded as the lowest functioning child in this group of presumably illiterate children.

On several occasions, however, Joanna softly articulated the final word in sentences shown her previously, or in unison with the assistant teacher. This suggested that Joanna was able to read words and her speech was cued by print, a common finding in the research literature on Down syndrome (see Buckley, 1995). The assistant teacher disagreed. She explained, "Joanna wasn't reading then. She makes those sounds like a kid playing school."

Mark Jersey had greater control over his speech and movement than did Joanna. Correspondingly, he was recognized as reading at a higher, second-grade level. Yet, at silent reading times, Mark was engaged for extended periods of up to 20 min reading Dirt Biker magazines written, on average, at a fifth-grade level. Based on one-to-one discussions with Mark, it was clear he understood the content of the stories. Mark's teacher, Jim McClanahan, lamented, "That's the thing. I haven't even really had a chance to sit down and hear him read or anything like that." Mr. McClanahan had primarily judged Mark's reading level based on his group participation, which was hindered by ridicule Mark received from his peers due to his poor articulation.

Consequences of Nonconformity: The Stratified Classroom.

Requiring conformity to a predetermined set of subskills resulted in the formation of a stratified literate social structure. Those students who conformed to expectations belonged, as Citizens, to a privileged literate community. Other students who struggled to conform, including those with Down syndrome, were sifted to the classrooms' reading margins. Here, existing in relation to the literate community as Squatters or Aliens, the children did not merely languish, but entered instructional practices that solidified their separation from privilege. Table 3 describes the stratified literate social structure and how particular students in the study were represented apart from valued literacy opportunities.

Table 3
Relationship of Student to Literate Community in Stratified Classrooms
Name Conformity Rights Justification Student Status
Citizen At age-normed pace to linear sequence of transmitted subskills or developmental scheme. Opportunity for full curricular participation leading to increasingly complex knowledge recognized as school success. Conformity recognized as cognitive ability.  
Squatter Partial at a reduced pace to linear sequence of transmitted subskills or developmental scheme. Participation in remedial practices that focus on low-level concepts or diminished subskills. Limited ability to conform is basis for reduced curriculum. M. Jersey, S. Loveland, G. Lafrey, J. Frederickson
Alien Lacking in relation to linear sequence of transmitted subskills or developmental scheme. Separation from literate community. Idiosyncratic behavior interpreted as cognitive incompetence. V. Schroeder, J. Sylvester

Literacy as a Web of Constructed Relationships

Certain teachers in this study rejected the definition of reading as an end-element to a sequence of isolated subskills requiring student conformity. In these classrooms, teachers defined literacy as an evolving dimension intrinsic to each strand of the web of shifting relationships that made up a classroom community. Children engaged symbolic tools, at varying levels of effectiveness, as they constructed understanding through constant negotiation and renegotiation of relationships with peers, adults, and materials.

The negotiation process was guided by teachers as they fostered culturally-valued connections between children and classroom materials. Within this framework, all children, including students with Down syndrome, were recognized as symbolic beings, and written language was recognized as a useful symbolic tool for constructing progressively enhanced relationships.

Recognizing the Symbolic Value of Students with Down Syndrome.

Teachers who recognized their students as literate appeared to value each child as a fully symbolic being, albeit in a constantly evolving web of relationships with the wider context. Shayne Robbins, whose classroom community included three children with Down syndrome, explained, "I see all my kids as incredible readers. Every one of them." She rejected the interpretation of teaching as transmitting skills, saying, "My sense is not that I'm teaching anyone to read, but I'm showing them that they do know how to read-to have them feel comfortable that they do read."

Establishing a value that all children were competently symbolic impacted on teachers' interpretations of student behavior and communication. Ms. Robbins demonstrated this during a conflict with a school psychologist over an assessment of her student, Isaac Johnson, who was nonspeaking and had Down syndrome. The psychologist asked Isaac to sort spoons and blocks into various containers. Isaac placed all the blocks to the side of a container, then tasted from each spoon before throwing it across the room, one after the other. He was not given credit. The psychologist used Isaac's response, in effect, to represent disengagement and incompetence from what the assessment defined as normalcy in development.

Shayne Robbins argued, "He didn't get credit for it because he didn't do it right, but he clearly knew which was the block, which was the spoon. And he followed directions in an organizing sense." Ms. Robbins recognized that Isaac was extremely focused on stories, both at home and at school, and that he engaged in pretend play based on stories he enjoyed most. His licking each spoon as he separated the objects was, according to Ms. Robbins, an act of pretending.

In engaging in symbolic play, Isaac recontextualized the assessment task into one of meaning based on experience, materials available, and performance comfort. What the psychologist saw as an act separating Isaac from normality, Ms. Robbins suggested, was actually a complex, symbolic response creating a more thoughtful and meaningful context.

Literacy as a Tool for Enhanced Connection.

Though certain teachers valued each student as symbolic, they also realized that to enter relationships of meaning required shared patterns for communicating ideas. Rather than dismissing to the classroom margins children with Down syndrome whose behavior was idiosyncratic, or allowing students to exist in relationships of misunderstanding leading to stagnation in the construction of meaning, teachers saw worth in symbols and print as a tool for connecting students to the wider classroom community. So, when Lee Larson responded to a reading workbook page by scribbling the word "Exit" over the entire page, Colleen Madison did not respond by interpreting Lee as incompetent, but rather saw in 'his relationship to the materials at hand a mismatch between expected behavior and Lees manner for conveying meaning. Ms. Madison viewed her role as one of problem-solving to establish paths of connection, not as one of laying blame on children for the mismatch. She noted, "I really think teaching is problem-solving. That you deal. And that's what you model to kids because that's what learning is."

Establishing Symbol Systems to Construct Relationships.

Lee Larson entered Colleen Madison's classroom unable to speak which, Ms. Madison felt, left him frustrated. Lees preclusion from participation resulted in a context of trepidation. "We were always walking on pins and needles waiting for the shoe to drop," Ms. Madison explained. "We never knew when he was going to erupt."

Ms. Madison noted, "We knew communication was the big piece missing. He was frustrated. We quickly saw that he gestured to try to tell us things. We understood him best through motion and movement." Based on his manner of performance, Ms. Madison invited a parent of one other students to come each week to the class to teach signed English.

Instructors in the class began to sign keywords in lessons, and, as comfort with signs developed, in conversation. Lee quickly began to gesture with close approximation to symbols in the signed English script. Ms. Madison said, "We thought, 'Wow! We can understand Lee better when he's signing and doing these motions.' It sort of clicked with him."

In providing Lee with a set of shared symbols to convey ideas, Ms. Madison recontextualized the communicative context of the classroom. Rather than interpreting symbols as an end to be used only after appropriate subskills were demonstrated, she saw the system as a means towards relationship building.

Though signing was of critical importance to Lee and other children with Down syndrome, the system had limitations. Both Ms. Madison and Shayne Robbins noted that the fine motor control of their students with Down syndrome posed an obstacle to clear use of a symbol system that demanded minute finger manipulations.

Establishing Print Systems to Construct Relationships.

For those children with Down syndrome whose performance difficulties precluded efficient use of speech or sign, teachers in classrooms that recognized students as symbolic beings were open to their students' use of printed language to build relationships. For instance, based both on Lee's quick ability to use gestural symbols, and the limitations that system held for him, his teachers introduced written words for communication purposes. Initially, Ms. Madison and the language therapist created a series of communication boards with sets of words and phrases they felt would be useful in different classroom situations. For instance, a "math board" included a number line, equation symbols, and words and phrases such as: yes, no, I don't know, need a break, bathroom, and all done.

In using the communication board, Ms. Madison did not require that Lee demonstrate subskills presumably required for print decoding. Instead, she introduced the written options in the context of real choices and told Lee to point to the word representing his request. Lee quickly found success in recognizing and making use of the print.

This led to the instructional team introducing the use of a keyboard for communication purposes. Rather than pointing to prearranged options controlled by adults, Lee was asked to spell choices. Spelling was a challenge for Lee because his movement patterns were explosively impulsive. His finger would come down on the keyboard with a bang, and remained fixed to the key causing multiple letters to appear.

Rather than focusing on Lee's movement as a manifestation of incompetence, Ms. Madison altered the typing context. She placed a key guard over the keyboard to assist Lee in hitting isolated keys, and she supported his arm with her hand to remind him to slow his gesture and target his pointing. This type of support, recently described as an element of "facilitated communication" (Biklen, 1995; see discussion) was first explored for children with Down syndrome by Feuerstein, Rand, and Rynders (1988). They pointed out that "many children who manifest impulsivity fail in tasks even though they know what they need to do to respond correctly" (p. 73). In describing the teacher as a "mediator," Feuerstein et al. (1988) suggested:

At certain stages in the development of control over impulsivity, the mediator may need to use physical means to keep the child from impulsive responding—perhaps holding the child's hands (or asking the child to sit on his own hands)—so that he wont point to an answer before looking carefully at the situation and thinking about it. (p. 75)

Ms. Madison explained, "It occurred to me [Lee] really needed the processing time, delay time, lag time. Overcome that impulsivity. And then stuff took off from there."

What took off was Lee's ability to express himself through print. Again, Ms. Madison opened up the option of print for communication purposes in day-to-day situations and relationships. In this way, Lee used print to build meaning with his peers. For instance, Lee and a classmate, Laura, got into an altercation on the classroom's couch. Laura shouted out, "Lee hit me. I didn't do nothing." Lee, however, disagreed. He typed, "I HIT LAR MAKE ME MOVE." Ms. Madison, who had entered the situation, asked Laura, "Did you make Lee move?" Laura said, "I didn't make him. I ASKED him." Lee typed, "LARA MEAN," but the two quickly joined each other, giggling, in a bean bag chair.

By introducing Lee and his classmates to signing, then to the use of words and print for Lee's expression, the meaning of literacy was constructed as a tool for connecting children with the wider context. It was within this connection that relationships were negotiated and renegotiated as the children's web of meaning constantly evolved.

The Meaning of Citizenship for Children with Down Syndrome

Conceptualizing all students as symbolic people and providing them with tools for creating meaningful relationships, had consequences for students with Down syndrome. Participation as a member of the literate community was fostered. Opportunities to demonstrate friendship were expanded, and the image of Down syndrome as an inherent deficiency was reconceptualized.

Opportunities for Participation.

Children with Down syndrome participated as full members of the literate community in classrooms that recognized the community as a web of relationships involving each student. Idiosyncratic behaviors did not separate children from the curriculum, but helped make up the community's ever-shifting boundaries.

For instance, Isaac Johnson entered Shayne Robbins classroom with a love from home for Maurice Sendak's (1963) picture book Where the Wild Things Are. For years Ms. Robbins' classes had made panoramas based on Max's journey, but this was difficult for Isaac who had problems creating, cutting, and gluing, recognizable figures. However, Isaac had a dramatic flair and a love for pretending. This led Ms. Robbins to support her class in developing a play based on the book. The students created dialogue, scenery, and costumes. Isaac played the lead role as Max. He was unable to speak his lines, but gestured to the printed line on a communication board with the facilitated support of an adult. A peer then read the line to the audience.

Ms. Robbins, recognizing Isaac's symbolic and literate presence, had effectively altered the context of her classroom in a direction that supported Isaac's participation. In doing so, she had opened up a rich literacy experience for all her children.

Opportunities to Demonstrate Friendship.

When a child was conceptualized as literate and symbolic, all behavior was supported as an effort to build relationships of meaning. April Carpenter was observed placing her arm around a sleeping friend during a van ride back to school following a field trip. Though she was unable to speak, her voice was clearly humming in varying pitches as she moved her hand close to the boy's face. Ms. Robbins glanced into the rearview mirror, and said, "April, you're singing William a lullaby. You're singing him the alphabet song." Ms. Robbins recognized April's hand movements to be the signed alphabet. April released William, tapped him on the head, and gestured towards Ms. Robbins the sign for "sleep."

Reconceptualizing Down Syndrome.

Interpreting children with Down syndrome as symbolic, and providing children with tools to construct meaningful relationships, reconceptualized Down syndrome from a traditional context of global intellectual deficiency to one in which each child was recognized as uniquely valuable to the classroom community. Shayne Robbins, in thinking about her three students with Down syndrome, explained:

I don't tend to see Down syndrome as something. If you look at those three kids running around the room, they're incredibly different from each other. They're different in terms of what their bodies are like, how they best communicate, what they're like socially, their interests. And with those three kids in the room it would be hard to say, "This is how you should teach kids with Down syndrome." They are not at all alike.

Resisting the interpretation of difference as deficit, Colleen Madison, in describing Lee Larson, said:

If you came into the room and were told there was a retarded child in the class, a child with special needs, I don't think you would pick Lee out. The kids really agree that he's as capable as they are. Intellectually the same.

These teachers effectively repositioned students with Down syndrome from a location of deficiency to one of value in the classroom.


Citizenship in the literate community for children with Down syndrome is based on two conclusions established in the research literature on literacy and disability. The first suggests all students are symbolic beings motivated to connect with the wider community (Ashton-Warner, 1963; Cunningham & Allington, 1994; Gardner, 1991; Koppenhaver, Coleman, Kalman, & Yoder, 1991; Smith, F., 1992). The second recognizes that written language must be incorporated into the classroom as a tool for connecting children with the wider community (Cunningham & Allington, 1994; Goodman, 1992; Goodman & Goodman, 1979; Oelwein, 1995; Smith, F., 1988a, 1988b; Solsken, 1993). Cunningham and Allington (1994) note, "Children who are successful at becoming literate view reading and writing as authentic activities from which they get information and pleasure and by which they communicate with others" (p. 21).

In establishing literacy as a mode of communication and connection, the idiosyncrasies associated with Down syndrome must be accounted for. Disability researchers have accumulated a mass of data noting a peculiar intensity in motor dilemmas expressed by people with Down syndrome which significantly affect their speech and movement (Anwar & Hermelin, 1979; Elliott, 1983; Frith & Frith, 1974; Henderson, Illingsworth, & Allen, 1991; Henderson, Morris, & Frith, 1981; LeClair, Pollock, & Elliott, 1993). Henderson et al. (1981) note that "There is some evidence to suggest that within the retarded population Downs syndrome children are less well-coordinated than their non-D.S. peers" (p. 233) intensifying the perception of intellectual disabilities.

Certain teachers involved in this study viewed "problem-solving" as central to their profession, and worked to support their students with Down syndrome to overcome performance and communication difficulties. One method described involved elements of what has recently been termed "facilitated communication training." Controversy surrounds this process of developing controlled gestures (see, for example, a series of opinions published in 1994 in the American Association on Mental Retardation's journal Mental Retardation, 32[3]). The question of authorship arises: "When Colleen Madison supports Lee Larson's typing gestures, is she actually manipulating his hand to construct words?" Several studies suggest that in experimental and quasi-experimental situations, the words purportedly typed by students are, in fact, authored by the support person facilitating the typing (e.g., Eberlin, McConnachie, Ibel, & Volpe, 1993; Hudson, Melita, & Arnold, 1993; Moore, Donovan, & Hudson, 1993; Simon, Toll, & Whirehair, 1994; Simpson & Myles, 1993; Szempruch & Jacobson, 1993; Wheeler, Jacobson, Paglieri, & Schwartz, 1993).

A number of studies, however, contradict the above findings, and suggest that people with disabilities are authoring: the facilitated text. This has occurred in:

Researchers have yet to sort out the facilitated communication controversy, but Colleen Madison noted that Lee's progressive independence with controlled gestures and his ability to express information unknown to the support person served to assure the instructional team and Lee's family that Lee's typed words were his own.

Recently, several efforts have been described in the research literature which successfully incorporate literacy as a communication tool connecting students with Down syndrome to the wider community (Buckley, 1983, 1993; Meyers, 1986, 1988, 1990; Oelwein, 1993). This insightful work builds on a small body of often ignored research and biography that has resisted the larger cultural logic resulting in the separation of people with Down syndrome from written language (Buck, 1933; Butterfield, 1961; Hunt, 1967; Pototzky & Grigg, 1942; Seagoe, 1964). In the 1940s, at the Bancroft School in Haddonfield, NJ, students with Down syndrome were recognized as extremely literate. Of 11 children with Down syndrome, 2 scored at the 6th-grade reading level, 7 ranged from 1st-through 3th-grade levels, and 2 were considered prereaders (Pototzky & Grigg, 1942). The authors concluded, "We propose, therefore, that the term 'Mongolian idiocy' so frequently found in the literature be discarded, and the term 'Mongolism' which more accurately describes the physical and not the mental status, be substituted" (Pototzky & Grigg, 1942, p. 510).

In the 1960s, two journals typed by people with Down syndrome were published as autobiographies (Hunt, 1967; Seagoe, 1964). Seagoe (1964) recounts how Paul Scott's wealthy father brought his son, born with Down syndrome, to a California teacher, Hellen Bass Keller. On meeting Paul, Keller assumed he could never become literate: "He spoke no intelligible words or sentences and asked no questions. He made incoherent sounds" (p. 12). However, in part because of the family's wealth, Keller worked with Scott beginning when he was 7 years old. She focused her efforts on developing his movement control, and introduced writing and typing as a means for conveying everyday information. Still at the age of 7, Paul quickly began to write notes such as: "I love you. Will see you soon. Paul." During that first year, Keller brought in a typewriter for Paul to see. Seagoe wrote: "That was the beginning of his self-taught use of the typewriter, a consuming interest and an indispensable tool" (p. 16).

Similarly, Nigel Hunt's father noted that his son "taught himself to type. I showed him how to use the shift key for capital letters, and that is all" (Hunt, 1967, p. 16). Nigel's literacy developed as he helped his mother around the house. She would spell out common items as they used them in the kitchen, connecting literacy to everyday life, and he would recreate the words using magnetic letters and the item labels as models. To the surprise of his parents, when Nigel was first given a book to read, he did so without hesitation or difficulty, and soon asked for books on poetry and a dictionary.

The students at the Bancroft School, as well as Paul Scott and Nigel Hunt, all succeeded as members of the literate community for the two reasons certain children in this study achieved membership: (1) They were valued as symbolic beings, not devalued as intellectually deficient, and (2) it was recognized they needed a tool for connecting symbolically with the wider community. Constructing relationships of connectedness through literacy reconceptualizes the understanding of children with Down syndrome as Citizens of the privileged literate community.


Teachers described in this study actively connected children with Down syndrome to the literate community. This occurred only when the students were involved as full participants in the regular routines and general lessons of classrooms made up of children with and without disabilities. Restructuring classrooms to support all students' participation appears fundamental to realizing individual children's literacy capacities. Physical presence, however, is not enough. Restructuring must also involve redefining literacy from a consequence of isolated subskill mastery to a tool for communication. In doing so, teachers have turned written language into a path students might choose to solve problems, accomplish learning goals, express emotions, empathize with peers, gather and convey information, form friendships, and resolve conflicts.


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