Stages of Acceptance of a Learning Disability: The Impact of Labeling

Article excerpt

The research described here is part of a 20-year longitudinal project tracing the lives of a group of 41 individuals with learning disabilities. The article enumerates a small piece of the qualitative findings obtained using an ethnographic approach that emphasized the "emic," or insider's, perspective. Since several of the research questions addressed patterns of change over time, portions of the interview focused on changes in past and present attitudes, emotions, conceptions and meanings related to the learning disability. A salient notion emerged from participants' narratives, which they described as "acceptance of the learning disability." Further analysis revealed a shared set of understandings concerning distinct stages of "coming to terms" with the technical realities of their disability and with the social/emotional impact of being labeled. These included (a) awareness of their "differentness"; (b) the labeling event; (c) understanding/negotiating the label; (d) compartmentalization; and (e) transformation.

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This article was developed from data gathered in a 20-year longitudinal study of 41 students with learning disabilities (LD) who as children had attended The Frostig Center. The overall purpose of the study was to understand as fully as possible and describe the common "life-span experiences" of our students so that generalizations, implications, and recommendations could be made for all persons with LD. One aspect of the study involved obtaining quantitative findings to determine predictors of success. These have been reported elsewhere (Raskind, Goldberg, Higgins, & Herman, 1999). To a large extent, the quantitative analysis required that each participant be "reduced" to a collection of characteristics or traits, to scores on IQ or achievement tests, to incidences of job changes, and to "average" income.

The overall purpose of the investigation, to describe the "life-span" experiences of persons with LD, cannot be achieved completely using a quantitative approach alone. At a minimum, there must be a treatment of participants as "whole persons." Research strategies for studying whole persons focus on symbolic, shared systems, study persons one at a time, and regard participants as "expert" consultants (Heinemann & Shontz, 1983). Beyond methodology, as Bos and Richardson (1994) pointed out, the very nature of the phenomenon studied with quantitative and qualitative research differs. These authors evoked Dabbs' (1982) comments, "Quality is the essential character or nature of something; quantity is the amount ... Qualitative refers to the meaning ... while quantitative assumes the meaning and refers to a measure of it" (p. 13, emphasis added). Similarly, Wolcott (1985) pointed out that the ultimate outcome of qualitative research (ethnography) is to describe the sense of meaning that researchers have made of what has been investigated; is a description of what has been observed, "plus something special in the nature of interpretive emphasis" (Wolcott, 1992, p. 21).

Although in agreement on the importance of the meaning derived by researchers, Spradley (1980) suggested that the "making" of meaning out of ethnographic information is the description and understanding of a culture from a native or insider's point of view. That is, what begins as mere inference made by the researcher must be verified over and over in various contexts with various insiders before a shared understanding is assumed. (1) He suggested that informants (2) review analyses (Spradley, 1979), as have other researchers dealing more specifically with educational settings (Goetz & LeCompte, 1984; Schon, 1991) or researchers specifically investigating persons with LD, such as Bos and Richardson (1994), Hellendoorn and Ruijssenaars (1998), or Reiff, Gerber, and Ginsberg (1997).

Spradley referred to the search for the insider's point of view as the "emic" perspective; the "etic" perspective, on the other hand, describes the culture from the point of view of the researcher or from the frame of reference of the researcher's culture. …