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

Beginning of article

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. Similarly, Smith (1987) made reference to the emic/etic dichotomy as it applies to research in educational settings. In the field of LD, Reiff et al. (1997), Gerber and Reiff (1991), and Gerber et al. (1990) are examples of researchers who have employed an emic perspective to elicit accounts from informants with LD "in their own words."

In addition, the larger 20-year investigation was aimed at acquiring knowledge on what McKinney (1994) called the "natural history" of LD and to search for patterns of change over time. Therefore, portions of the interview were devoted entirely to questions concerning changes in past and present attitudes, emotions, conceptions and meanings, especially those related to the LD.

A salient notion for both researchers and participants emerged as an important subject of study early on, the development of "acceptance of the learning disability." Hence specific questions in the interview addressed the concept. Klass (1981) explored the development of "acceptance" (of death and other hardship) as a kind of symbol with a long history of associations and meanings in the American system of beliefs. He used Kubler-Ross' (1969) stages of grief (upon learning one's illness is terminal) as an example of a current theory arising out of a pre-existing category. The last stage (or goal of the process) is acceptance. He placed "acceptance" more generally in the American culture and symbolic system as part of a larger, "private sphere" of symbols (as opposed to the public sphere), associated with domestic (and feminine) concerns. Klass pointed out that the notion of "stages of acceptance" has been extended to many phenomena and been popularized widely so that the stages are now incorporated fully into the American belief system.

Because the notion of acceptance has been applied to so many types of phenomena, it is important to point out that both Klass and the present authors are referring to self-acceptance, rather than to the (social) acceptance of a person with a condition by others. Acceptance of a child with an LD by others with the condition, as well as by teachers and by nondisabled peers, has been addressed specifically in several studies (Barga, 1993; Foster, Schmidt, & Sabatino, 1976; Guindon, 1993; Hanson, 1997; Kuther, 1994; Renick, 1985; Rolison & Medway, 1985).

To summarize, the present article attempts to utilize the emic perspective within a longitudinal design to capture from our participants their own descriptive language, categories, and organization of the concept of "acceptance" of their LD. The data upon which the researchers have based the following account were gathered in the context of a larger 20-year longitudinal study that included both qualitative and quantitative analysis. The specifics of the methodology employed in the larger study follow.

METHOD

Participants

For the l0-year followup study (Spekman, Goldberg, & Herman, 1992), questionnaires were sent to the parents of 206 former students of The Frostig Center who had been diagnosed with an LD and had attended the school for at least one year. Of the 206, 89 parent responses were received; 50 former students agreed to a more lengthy interview and were also assessed as to current achievement and IQ measures. (3) The final 50 students were compared to the original 206 previous students as to socioeconomic status, age, gender ratio, ethnicity, verbal, performance and full scale IQ, achievement discrepancies, and original diagnosis. No significant differences were found along any of the measures. At the conclusion of the l0-year followup, approximately half of the individuals were rated as "successful" and half as "unsuccessful" based on clinical summaries of interviews, job and educational status, current testing, and questionnaire data. Criteria for the ratings were based broadly on employment, educational, familial, social, and psychological adjustment criteria.

At the 20-year followup, researchers were able to reach 47 of the 50 students from Year 10. Of these, enough information was obtained from 41 to allow a rating of successful/unsuccessful. Extensive, direct interviews were conducted, which lasted from 4 to 6 hours and included specific questions concerning financial status, employment history, residence history, family relations, community relations, physical health, recreation, criminal contacts, drug and alcohol use, and a wide range of personal/psychological attitudes and behaviors. Databases were established for quantitative data, and transcripts were prepared of the interviews.

Other data included current achievement and IQ testing scores, additional cumulative file information, life stressor checklists completed by each participant, researchers' current ratings of success, researchers' ratings of each participant for the presence or absence of six success attributes (discussed below). For comparison and verification of information, public sources were consulted such as voter registration, criminal and civil court records, and so on.

The raw data for the current article for the most part were taken from transcripts of individual interviews conducted during the 20-year followup when participants were in their mid-thirties. The researchers began with the 10-year followup interview questionnaire that had been used to formulate the clinical summaries. Over several months the researchers met to revise and refine questions, and to formulate new ones that arose out of previous analyses, or reflected current research interests in the field of LD. Members of the research team, composed of an anthropological linguist, a developmental psychologist, a specialist in LD and a clinical psychologist, had each been working in the LD field for over 15 years.

During the development of the protocol questionnaire, constant contact was maintained with children and adolescents with LD currently at The Frostig Center. In addition, all the researchers had developed many relationships, both professional and private, with adults with LD. Questions and research strategies were refined continuously and elaborated according to feedback elicited from these LD persons. Consequently, our cumulative involvement with the LD community was wide, rich and historical, as well as current, reaching far beyond the 50 participants in the study.

Data Analysis

During the interviewing of the participants, the research team conferred on a weekly basis to refine interview techniques, strategies, and study questions, as well as to develop tentative trends, commonalities, and themes. The taped interviews were transcribed and distributed. Weekly meetings continued to begin formal analysis of the transcripts and protocols. Typically, on the first discussion of a transcript, the researcher who had interviewed the participant would describe briefly the physical conditions of the interview (e.g., where it had taken place, distractions, etc.) and any difficulties that had arisen. For the quantitative analysis, (4) rating sheets had been prepared that included overall success ratings as well as ratings on individual domains including employment, education, independent living, family relations, community involvements, crime/substance abuse, and physical and mental health. After all transcripts had been reviewed, group assignment was made into successful and unsuccessful participants, and domain ratings were collected and analyzed.

As the quantitative analysis progressed, the findings from Year 10 were further developed; specifically, a set of success attributes were refined that were identified as being highly characteristic of the successful participants. For the 20-year followup, these were operationalized and further quantified. Each participant was rated for the presence or absence of designated behaviors or attitudes characteristic of each attribute. For example, Appropriate Goal Setting and Self-Directedness was one of the original Success Attributes from Year 10. In Year 20, Goal Setting was operationalized as the following: participant (a) refers to current goals; (b) gives evidence of past and future planning; ... (f) expressed interest in developing a sense of meaning to his/her life (see Appendix A of the 1999 article for a complete listing of the Success Attributes). As expected, successful participants showed many if not all the behaviors and attitudes identified in the six Success Attributes, while unsuccessful individuals showed significantly fewer.

After the quantitative analysis, all …