Early Childhood Education
Literacy and Disabilities
Despite a rich knowledge base on how children learn to read and write and how best to teach them, an alarming number of children with disabilities will reach adulthood having not attained literacy (Saint-Laurent, Giasson, and Couture, 1998). Factors influencing this disturbing phenomenon include home literacy environments, caregiver and teacher expectations for literacy, cognitive skills, language skills, severity and type of disability, as well as the educational curriculum. As literacy development is a lifelong process that begins at birth, even for individuals with a wide range of disabilities, is important to understand the relationship between literacy and disability.
National data on literacy for young children with disabilities are not readily accessible. Few literacy specialists have opened the door to that investigative possibility. The research available suggests that children with disabilities are arriving in the classroom having had less rich literacy experiences—both in quantity and quality—than their nondisabled peers (Saint-Laurent, Giasson, and Couture, 1998). All children with disabilities appear to be given limited access to reading, drawing, and writing materials as well as literacy instruction or intervention across the lifespan (Weikle and Hadadian, 2004). And yet, research does not support the supposition that children are “too physically, too cognitively, or too communicatively disabled to benefit from experiences with written language” (Koppenhaver et al., 1991).
The type and severity of the disability play a role in placing limitations on early and later literacy experiences. A child’s sensory, physical, cognitive, or communicative differences may limit their opportunities to explore print or engage in literacy-rich activities with family. Children with severe physical impairments, for example, have greater difficulty accessing and using print devices, such as writing instruments and keyboards. Children with visual impairments experience difficulty attending to print, and children with hearing impairments have trouble connecting sounds to that print. Intellectual impairments may also serve to slow the response to literacy events and the understanding and use of print. The presence of one or more impairments may lead some parents to lower their expectations for their children’s future reading proficiency and overall academic achievement. Others may simply lack the knowledge and resources with which to stimulate their child’s literacy skills.
Regarding the emergence of literacy in early childhood, children with disabilities tend to acquire emergent literacy skills at a slower rate than their same age peers (Boudreau and Hedberg, 1999). Emergent literacy delays are prevalent in children exhibiting language impairment—either as a primary disability or as a secondary disability to other conditions, such as autism or mental retardation. For these youngsters, delayed emergent literacy typically exists in all key areas of emergent literacy, including print awareness, phonological awareness, alphabet knowledge, and metalinguistic as awareness (1999). Thus, it is widely recognized that early intervention goals for these children should address emergent literacy in the context of overall developmental goal setting. Results of emergent literacy intervention programs reveal that children with mild impairments who are enrolled prior to six months of age achieve better outcomes than those who enter programs at later ages. Children with severe disabilities, however, exhibit consistent gains regardless of age initiation in a literacy intervention program (Weikle and Hadadian, 2004).
Children with speech and language impairments appear to be at risk for having difficulties using written language, because oral language lays the foundation for all subsequent language learning, especially reading (Boudreau and Hedberg, 1999). Children with language impairments when compared to their typically developing peers have demonstrated poorer performance on tasks measuring knowledge of rhyme, letter names, and concepts related to print. While the nature of the speech and language impairment appears to be an important factor in predicting later reading achievement, there is wide variability in reading achievement among these children. For example, some children with phonological impairments in preschool have developed reading disabilities and some have not. Children exhibiting language deficits in the areas of vocabulary and grammar are placed at highest risk for reading disabilities; at a lower risk are children exhibiting only articulation disorders (Catts, 1993). Boudreau and Hedberg (1999) found deficits in narrative discourse related to syntax and semantics, supporting an earlier finding that vocabulary and grammar measures at age 4 are predictive of reading achievement at age 8 (Catts, 1993). Measures of metalinguistic abilities, including phonological awareness skills, are the best predictors of reading achievement (1993), which puts children with a variety of communication disorders at high risk for reading disability.
Weikle and Hadadian (2004) report that children with disabilities experience literacy at a much lower level than their nondisabled peers, suggesting that the needs of their disability may compete for primary therapeutic and educational focus. For instance, a child with severe cerebral palsy (CP) may require increased assistance with gross motor and fine motor tasks, decreasing caregiver or teacher attention on the child’s need for improvement in literacy skills. Research also reports that home reading and writing experiences of kids with severe speech impairments is limited and that children with disabilities are exposed to less books than their nondisabled peers (2004). Marvin (1994) found that children with single disabilities are equally as likely to have limited contact with print materials, reading episodes, and writing events as those children with multiple disabilities.
Among individuals with cerebral palsy (CP), between 50 and 100 percent are illiterate, depending upon the degree of physical and communicative impairment. Research reveals that individuals with severe physical disabilities may not have as many opportunities to develop literacy skills. They may lack appropriate accommodations for literacy learning opportunities. For example, body positioning equipment and augmentative and alternative communication (AAC) devices, such as buttons, switches, or computers, may allow an individual with severe physical disabilities to interact more appropriately with a reader or a book. Additionally, they may lack literacy instruction due to a focus on therapeutic needs. Teachers and caregivers may inadvertently place curricular focus on physical needs, gross or fine motor skills, and related activities of daily living, involuntarily limiting overall opportunities for text production in authentic literacy contexts (Weikle and Hadadian, 2004). When comparing AAC users to their nondisabled peers, there are significant differences found in the quality and quantity of literacy materials and activities. Parents of AAC users place greater priority on communication, mobility, and feeding than on literacy, while the parents of the nondisabled peers rank communication, peer relationships, and literacy as their highest priorities (Light and Kelford-Smith, 1993).
In children with hearing loss, literacy development frequently is delayed in the early years; but in later years, these children tend to develop basic levels of literacy. Children with hearing loss were once supposed to need to develop reading readiness through an oral or sign language. Teachers once focused primarily on these aspects of their curriculum. However, that fallacy is now being addressed in U.S. classrooms. Teachers are recognizing that good speaking and or signing skills are not necessarily a prerequisite to literacy learning and that reading and writing can be an effective means of communication as well as an efficient facilitator of overall language growth in all children, particularly those with disabilities (Weikle and Hadadian, 2004).
Early and ongoing home experiences with literacy also play a critical role in literacy outcomes for children with disabilities. Parents’ perceptions and expectations of future literacy may be lower for these children than for their nondisabled peers. Additionally, children with disabilities may not respond to reading activities in the same manner that their nondisabled peers do. For example, a one-year-old girl who has limited upper body movement may not consistently point to the pictures in a book as her parent reads to her. One would expect a child at her age to be able to listen to simple stories, participate in rhymes and finger plays, and point to pictures in a book when named. However, when this child fails to respond like her typically developing peers, parents will unintentionally reduce regular interactions with books. Lowered expectations combined with reduced responsiveness to literacy events may unwittingly engage families in a cycle of less frequent book exposure, lowered literacy expectations, self-doubt, and a pattern of learned helplessness with regard to literacy and overall achievement (Weikle and Hadadian, 2004).
Children with disabilities who have achieved high levels of literacy relate several shared characteristics among their parents. Foremost, their parents believed themselves to be important teachers in their child’s life. These parents frequently served as literate models, reading aloud regularly to their children. As adults, these children with disabilities reported that their parents created time to interact with them as literate individuals, providing reading and writing materials for the children to use. The priorities that parents hold with regard to their child’s needs play a significant role in determining literacy outcomes. Parents who rank physical priorities high, such as mobility and feeding, place a lower priority on communication and literacy. Parents of nondisabled children rank communication, making friends, and literacy experiences as their highest priorities (Light and Kelford-Smith, 1993).
Older children with disabilities have traditionally been excluded from the literate community of classroom learners, due much in part to teacher expectations and curricular focus. Kliewer (1998) described the three literacy participation styles imposed by teachers within both inclusive and self-contained classrooms— citizens, squatters, and aliens in the literate community. Citizens in the literate community have two things in common: first, “they are valued as symbolic beings, not devalued as intellectually deficient, and secondly, it was recognized that they needed a tool for connecting symbolically with the wider community” (Kliewer, 1998, p. 177). Kliewer’s study revealed that teacher practices in literacy inclusion play a significant role in either encouraging or limiting literacy attainment for students with disabilities. Most of the students observed in his ethnographic study were relegated to either the position of the squatter or the alien. The “squatter’s” classroom participation in literacy events was limited to remedial practices that focus on low-level concepts or diminished subskills. The “alien,” however, is separated from the literate community altogether due to idiosyncratic behaviors interpreted by the teacher as cognitive incompetence. These disturbing practices led the Center for Literacy and Disability Studies to formulate a “Literacy Bill of Rights” (see below), which states that “all persons, regardless of the extent or severity of their disabilities, have a basic right to use print” (Yoder, Erickson, and Koppenhaver, 1997).
A Literacy Bill of Rights
All persons, regardless of the extent or severity of their disabilities, have a basic right to use print. Beyond this general right, there are certain literacy rights that should be assured for all persons. These basic rights are:
1 The right to an opportunity to learn to read and write. Opportunity involves engagement in active participation in tasks performed with high success.
2 The right to have accessible, clear, meaningful, culturally and linguistically appropriate texts at all times. Texts, broadly defined, range from picture books to newspapers to novels, cereal boxes, and electronic documents.
3 The right to interact with others while reading, writing, or listening to a text. Interaction involves questions, comments, discussions, and other communications about or related to the text.
4 The right to life choices made available though reading and writing competencies. Life choices include, but are not limited to, employment and employment changes, independence, community participation, and self-advocacy.
5 The right to lifelong educational opportunities incorporating literacy instruction and use. Literacy educational opportunities, regardless of when they are provided, have potential to provide power that cannot be taken away.
6 The right to have teachers and other service providers who are knowledgeable about literacy instruction methods and principles. Methods include but are not limited to instruction, assessment, and the technologies required to make literacy accessible to individuals with disabilities. Principles include, but are not limited to, the beliefs that literacy is learned across places and time, and no person is too disabled to benefit from literacy learning opportunities.
7 The right to live and learn in environments that provide varied models of print to use. Models are demonstrations of purposeful print use such as reading a recipe, paying bills, sharing a joke, or writing a letter.
8 The right to live and learn in environments that maintain the expectations and attitudes that all individuals are literacy learners (Yoder, Erickson, and Koppenhaver, 1997).
The National Adult Literacy Survey (Kirsch et al., 2002) included questions requiring respondents to categorize any illness, disability, or impairments. Twelve percent of the sample population reported some illness, disability, or impairment, and when comparing their literacy proficiency levels to those of the total population, the evidence was clear. Adults with any type of disability were more likely to perform in the lowest literacy levels, and some categories of illness, disability, or impairment appeared to have a stronger correlation with very low literacy levels. For instance, adults with mental retardation exhibited the most deficient literacy levels and were four times more likely than peers to perform in the lowest level of a literacy scale. Conversely, respondents with hearing difficulties exhibited higher literacy levels than those in other categories of impairment. The smallest gap in average reading performance among categories of illness, disability, and impairment was found between those reporting hearing difficulties and the general population. On the whole, however, significantly low-literacy levels were found among those adults with disabilities and impairments (Indicator 36, 2003). See also Disabilities, Young Children with; Parents and Parent Involvement.
Further Readings: Boudreau, D. and N. Hedberg (1999). A comparison of early literacy skills in children with specific language impairments and their typically developing peers. American Journal of Speech-Language Pathology 8, 249-260; Catts, H. (1993). The relationship between speech-language impairments and reading disabilities. Journal of Speech and Hearing Research 36, 948-958; Indicator 36: Home literacy environment and kindergarteners’ reading achievement. (2003). U.S. Department of Education, National Center for Education Statistics, The Condition of Education 2003, NCES 2003-067. Washington, DC: U.S. Government Printing Office; Kirsch, I., A. Jungeblut, L. Jenkins, and A. Kolstad (2002). Adult literacy in America: A first look at the findings of the National Adult Literacy Survey. U.S. Department of Education, National Center for Education Statistics, NCES 1993-275, Washington, DC: U.S. Government Printing Office; Kliewer, C. (1998). Citizenship in the literacy community: An ethnography of children with Down syndrome and the written word. Exceptional Children 64(2), 167-180; Koppenhaver, D., P. Coleman, S. Kalman, and D. Yoder (1991). The implications of emergent literacy research for children with developmental disabilities. American Journal of Speech and Language Pathology 38-44; Light, J., and A. Kelford-Smith (1993). The home literacy experiences of preschoolers who use AAC systems and of their non-disabled peers. Augmentative & Alternative Communication 9(1), 10-25; Marvin, C. (1994). Home literacy experiences of preschool children with single and multiple disabilities. Topics in Early Childhood Special Education 14(4), 436-455; Saint-Laurent, L., J. Giasson, and C. Couture (1998). Emergent literacy and intellectual disabilities. Journal of Early Intervention 21(3), 267281; Weikle, B., and A. Hadadian (2004). Literacy, development, and disabilities: Are we moving in the right direction? Early Child Development and Care 174(7-8), 651-666; Yoder, D. E., K. A. Erickson, and D. A. Koppenhaver (January 23-24, 1997). Literacy bill of rights. Presented by the Center for Literacy and Disability Studies at the Sixth Symposium on Literacy and Disabilities. Durham, NC: Eric Document 407-497.