Abstract
The purpose of my study was to reflect upon my work as a teacher. The research focused on hearing the stories of two individuals, labelled developmentally disabled, experiences of segregated schooling. Through listening to and making meaning of their stories I gained understanding and insights about myself as a teacher.
The study was conducted over one year by way of interviews and the research was collaborative by engaging the participants in a reciprocal and responsive process in interpreting the data. The data was analysed to determine the common threads between the participants' school lives and my experiences as a teacher. The narrative themes that emerged from their told stories were:
While the research provided space for the two research participants to tell their stories of segregation, the participants' words became a mirror for reflecting on my lived experience as teacher in the special education classroom. Their words became part of the education of this teacher who has grown to want the opportunity to construct new stories around new plot lines and to imagine different stories, stories of hope for full inclusion for all children.
Narrative Inquiry as Method
Narrative inquiry opens spaces for those on the margins to tell their stories. These lived and told stories constitute experience (Connelly & Clandinin, 1994). In my (re)search I attempt to capture the experiences of the participants through narrative inquiry. Through the incorporation of the participants' views, I hope to further explore and better understand the morality of my teaching. The opportunity to share our lived experience with other people helps to give the teller the external confirmation that her life has significance. Adrienne Rich in Frye (1986) expresses it by saying, "...in breaking those silences, naming ourselves, uncovering the hidden, making ourselves present, we begin to define a reality which resonates to us, which affirms our being" (p. 61). Herein lies one of the critical conditions for the voices of differences to find their way to the centre of the dialogue process. Through language we define ourselves, therefore it is important to create the space for all to be heard so that their voices do not remain forever silent or at the fringe of society.
Humans are storytelling organisms who individually and socially, lead storied lives (Connelly & Clandinin, 1990, p. 2).
Narrative inquirers are interested in lived experience. We seek to understand the storied lives our participants lead on a storied landscape. "Experience is what we study, and we study it narratively because narrative thinking is a key form of experience and a key way of writing and thinking about it" (Clandinin & Connelly, 2000, p. 18). The telling and retelling of stories is "fundamental to human search for meaning" (Bateson, 1989, p. 34). We are concerned with people's lived and told stories. "Stories constitute lived stories, individual and collective, retold and reconstrued" (Ely, et al., 1997, p.64). Narrative inquiry provides a way of representing and understanding these lived experiences. Narrative inquiry creates an opportunity to engage, explore and enhance human experience and provides the opportunity for a research participant to tell her story in her own terms. Narrative is a method of inquiry and a way of knowing.
Why Narrative Inquiry?
The purpose of this study was to give voice to the school experiences of individuals labeled developmentally disabled. In doing this I hoped to further construct my understanding of how my students in special education may have interpreted my teaching. To do this it was necessary to conduct research that was grounded in the experiences of the individuals. My intent was not to silence the participants but to create the opportunity for them to reclaim and re-name their experiences (Kirby & McKenna, 1989). In selecting a methodology I wanted to find a way to allow the participants to describe reality from their perspective, a perspective that traditionally has been excluded in the production of research. I believe that they have different knowledge. As a teacher, I have a desire to understand this knowledge and way of knowing so as to understand how best to educate learners that have been labeled developmentally disabled.
Whose Stories Count?
Memories matter. They are our lives with our own personal pasts. They are ways of saying this is who I am... In looking back on their experiences, and remembering how life was for them, they are saying a lot about who they are now. They are people with a past, a past that has helped shape them. So often the pasts of people with learning difficulties have been discounted (Atkinson, 1990, p.36).
Each of us has a story to tell, even those that society deems as developmentally disabled. When I discussed my research with others, I was often asked how could people with developmental disabilities tell their stories and how could it be trustworthy. I was often struck by such questions for I have come to see that each of us has a story. The stories of people with developmental disabilities may differ from mine but their stories also have pasts, presents, and futures and their stories are who they are.
How after all, can one experience deny, negate, disprove, another experience? ... your experience is your truth. How can one being prove another being wrong? ... my being is my truth (Le Guin, 1989, p. 150).
As an educator, I had come to see that the narratives of people with developmental disabilities have come to occupy the centre of my personal life. They are not individuals who live on the margin. They are my friends and my friends' children. Their memories count. I want to think about disability in terms of how the person with a disability narrates her school life.
In new roles in new settings, more and more people with developmental disabilities emerge as having the same desire to author their own lives as anyone else does (O'Brien & Lyle O'Brien, 1991, p. 7).
Conversations: The Basis for Data Collection
Conversations between the participants and myself formed the basis for the data collection. The conversations can be described as being interactive in nature. Oakley (1981) suggests that in an interactive conversation the researcher is more than an instrument for data collection. Rather, both the researcher and the participant are considered a source of information. Therefore, we both shared information and contributed to the research process. The conversations were the sharing of ideas, philosophy and experiences. The conversations were a sharing of ourselves.
In my (re)search I hoped to create such a space by "building an open and leisurely interview that establishes rapport and allows presupposition and frames of reference of the interviewee to emerge" (Belenky et. al. 1986 p. 10). Through the intimate interactions, rather than impersonal, formal, structured conversations, the voice of the participants can be heard. I invited the participants to tell their stories with few questions in order to allow the respondents to control and develop their own responses. The use of informal conversations created the space for the participants to tell and retell their own school stories. I strived to create an atmosphere that reflected being in conversation with the participants and not one of an interview. "In "real talk" domination is absent, reciprocity and cooperation are prominent" (Blenky et. al. 1986, p. 146). One way this was accomplished was rather than having a set of predetermined questions to guide our conversations, I relied on spontaneous questions that occurred in conversation to further explore the participants' experiences. This created space for the participants to shape the conversations. Intensive conversations as a methodology provided me with the opportunity to discover information about the participants' experiences in their language. Their voices allowed me to further reflect on my commitment to examine critically my lived experience as a teacher by reflecting on their telling of their lived experience.
Selection of Participants
I invited two participants to join me in reflective conversations. Their names are Percy and Herb and both have been labeled developmentally disabled.
Percy
I first met Percy at a board meeting of the Alberta Association for Community Living (AACL a community advocacy organization). She was invited to speak as a guest on behalf of the People First Association, Edmonton. She had come before the members of the board to raise her concerns with the lack of inclusion of people with developmental disabilities on the AACL board. She spoke with determination and honesty and with such insight that the board was silent after her presentation. This was the first of many meetings I would have with Percy before I asked her to participate in a research project with me.
In getting to know Percy I learned that she is a woman aged 32, she is a single parent with a daughter aged 12 and has lost a child previously. Her first daughter was removed from her and placed in the care of the government. While her child was in "protective custody," she died. Percy herself had been placed in care as a young child. Her life was filled with despair and struggles. One striking experience for her was when she was placed in a large institution for the developmental disabled as a young school age child. The scare of this experience has continued to be evident in the telling of her story. Her home situation was filled with many foster homes until she lived with one family for over ten years. This is the one she calls home and this foster mother, her "mom".
She experienced many different school situations. Among these was a time of no schooling while living in the institution, but she also attended segregated schools for children with developmental disabilities or segregated classrooms in public schools. In spite of these experiences she went on to get her high school diploma at an adult vocational college. On completion of this education Percy became involved in the advocacy movement. She has become one of the leaders locally, provincially and nationally in helping others understand the need to attend to the rights of individuals with developmental disabilities.
Herb
I first met Herb at a conference. We both had attended to further develop our understanding of how to support people with developmental disabilities to advocate for their own rights. This was to be the pattern of our meetings over the next three years. At conferences in another parts of the country I was to discover more about who Herb was as a man.
At 32, Herb is an articulate and quiet man. Afraid to offend others he is diplomatic throughout the telling of his experiences about what others have done to him about things beyond his control during his time in schools and in the community.
Herb is a member of a loving family from whom he continues to get support as an adult. His parents and siblings are very much part of his life. His dad has been helpful by supporting Herb in his activities as a provincial leader in the self-advocacy movement.
As a child he attended school in many different districts because of his father's employment. As a family it was necessary to move almost every year. Throughout his schooling he attended school in regular classes, segregated classes, segregated schools and segregated work-study programs. As an adult he attended adult vocational classes at a community college.
On graduation from an adult college Herb held many different jobs until he moved to the one he holds now as a van driver. He is responsible for the transportation of employees around a company complex. Herb is particularly proud of this job, which he has held for six years, because he makes $11.00 an hour. He indicated often that he did not think many of his teachers would have thought he would be as successful as he has become. Although he is pleased with his accomplishments, he has often voiced his wish to be able to do other work. He has cited his limited education as the reason he has not been able to get other jobs. He is worried that other employment might entail the need for him to work with numbers and to spell, things he sees as his weaknesses.
Herb is a parent. He shares the parenting role with his girlfriend for their two-year-old daughter and his five-year-old stepson. Parenting comes easily to Herb. He is very loving and caring towards both of the children. Along with his job as a driver and his role as a parent, Herb juggles his volunteer work in advocating for himself and others who have developmental disabilities.
Field to Field Texts
My research work involved working with Percy and Herb in a collaborative inquiry to tell their stories of their experiences in school. The specific task of the study was to allow both of them, as recipients of special education, to speak for themselves and to gain an understanding and insight into myself as a teacher while I interpret and make meaning of what was spoken. Bogdan and Taylor (1982) explain the significance of studies such as this when they say,
Research in mental retardation (sic) and institutions comes from people in powerful positions vis-à-vis the so-called retarded (sic). These views may not be lies, but they do not represent the whole story either. The stories of the powerless - the judged - add an important dimension to the study of mental retardation (sic) (p. 208).
The conversations with Percy and Herb have helped me to gain a sense of the past from their points of view - an aspect often lacking in the written histories of schooling for individuals with developmental disabilities. Our conversations were narratives of Percy and Herb's school experiences. Both willingly shared their uncertainties, problems and aspirations; I am grateful for this. I have come to know their thoughts and feelings. I have come to appreciate and care for each of my new friends. Our conversations have enhanced our connections with each other. Our repeated conversations have helped me to find threads of my life, threads upon which I have been able to reflect. Pieces of Herb's and Percy's stories are, and will continue to be given back to me through my teaching.
Our talks seemed undirected at first. Later, the transcripts became our road maps to refer to as we planned further conversations. They provided the skeleton for burrowing deeper into the experiences within each moment. For me each conversation was much like going back to a previously visited place and exploring the area further. The return had feelings of familiarity but presented new experiences. Even though I could return to the transcripts to guide our next conversation it was hard to know what each subsequent conversation would entail for it was not yet part of my body.
I spent very little time with the conversation transcripts of meetings with Percy and Herb in the beginning. Then, as time went on, I spent more and more time with them. I turned their words over and over as I discovered the richness inside them. I explored their words with excitement and pleasure for they shaped my sense of their stories.
With each participant I had four taped conversations. The conversations ranged between one and one half to two hours long. After each conversation I would transcribe our conversation. Before the next meeting each participant was given a copy of the transcripts from the pervious conversations.
Interpretation and Representation
Kirby & McKenna (1989) suggest that the researcher's task is to bring the data together to "make sense" of life experiences. As I struggled to represent the stories of the two participants, I was struck by the importance of representing the work to make it available to more than the research community. My participants reminded me often that the work must not be a specialized activity for a select few but rather one that speaks as well to self advocates and teachers. Kirby & McKenna (1989) remind the researcher that when working with those on the margins one must "maintain a focus on the world from the standpoint of the margins, to openly recognize the experience of marginalization and to use it as a touchstone" (p. 65). The Webster's Dictionary defines touchstone as "any test or criterion for determining genuineness; the touchstone of common honesty". In my research I have attempted to remain sensitive to the fact that the possibility exists for misunderstanding, stereotyping and misrepresenting my participants' experiences. In the collection and interpretation of the data I have worked under the assumption that people experience the world differently and, because of this, people have different knowledge. Representing knowledge of the participants was the intent of the research. I view their knowledge as valuable and of great importance in shaping my understanding of how individuals labeled developmentally disabled experience school. As a friend once said, "When someone shares their story, you have responsibility for it" (Sewall, I.,1992). I feel I have a responsibility to represent the participants' stories with the dignity that they deserve. I have a further responsibility, that is, to carry it with me forever.
connections between their stories and research in developmental disabilities. The research literature helped me to put my reflections and my research participants' stories into the context of the construction of disabilities. While preparing to pull out the common themes between Percy's and Herb's stories, I realized how in many ways, their stories parallel the stories of students I have taught in special education. Percy and Herb's stories reawakened in me many of my own stories of teaching. Through reflection on their stories and the existing literature I have come to understand new meanings in my teaching and new ways to understand the possible experiences of students I have taught.
Listening and interpreting my participants' narratives, it became evident that there were themes interwoven throughout the stories of Percy, Herb, my students and myself. For all of us, our stories were about the construction of identity. This research has provided a space for Herb and Percy to tell their stories but has also grown to be a space for my reflections as a teacher. The research process was a telling of my teacher's story. Percy's and Herb's words became a mirror for reflection of my lived experience in the special education classroom. Their words have become part of the education of this teacher.
Conceptual Framework
Bogdan and Taylor (1987) argue that the focus of research on social deviance has led to the exclusion rather than the inclusion of people with developmental disabilities in society. Research focused on how the social and cultural phenomena is constructed has placed people labeled developmentally disabled "in a deviant social role, subjected to stigma and rejected by the community at large" (Taylor & Bogdan, 1989, p. 22). They conclude that in our society if you are viewed as different, and if the difference is viewed as negative, the individual will experience repercussions throughout their lives. Once seen as less valued, society treats the individual in a negative way. Taylor and Bogdan (1989) note in their research four things that contribute to the negative repercussions that individuals labeled developmental disabled will experience. First, "mental retardation is a social and cultural construct"; second, "the label of mental retardation carries with it a stigma"; third, "labeling someone as mentally retarded creates a self-fulfilling prophecy"; and finally, "institutions and organizations designed to treat or care for people with mental retardation create or reinforce behavior that further distances people with mental retardation from the broader community" (p. 23-24).
Taylor and Bogdan's (1989) four themes were central in Percy and Herb's stories. In addition, upon reflection, my students' that I taught in special education experiences are also reflected in these four themes. These four themes formed the frame that I have used to interpret my participants' school stories and reflect upon my students' experiences.
Theme One: Disability Is A Social Construct
There is a prevailing assumption that disabilities are human pathologies inherent in the individual. However, there is an opposing view that disabilities are not human pathologies, but are rather social and cultural constructs (Bogdan & Taylor 1989; Hahn 1989; Skrtic, 1991). Disability, in this view, is culturally relative rather than inherent in the individual. Wolfensberger & Thomas (1983) states that although different cultures define some differences as disabilities, what is, perceived as different falls into one or more of three broad categories.
(a) physical differences and bodily impairments that exist from birth, or that occur later because of disease, old age, or other reasons; (b) overt and covert behaviors (the latter including religious, political, and other beliefs); and (c) attributive identities of people, such as dissent, nationality, the ethnic group from which a person derives, the language he/she speaks, or even a person's caste regardless of appearance, behavior, language, etc. (p. 23).
Within western culture, individuals labeled with developmental disabilities are seen as different. Their differences are labeled as disabilities and, therefore, they are subject to being treated differently. If a person is defined as deviant by their society, then they will experience devaluation and rejection. When services and supports are designed with the assumption that disabilities are inherent in the individual, limitations are placed on the labeled person. When an individual does not succeed, the fault is placed on the labeled individual rather than on the structures framed around the person.
Percy and Herb: The Construction Of Disability
For Percy, the construction of disability began at an early age.
It started at an early age when I went to New Hope School (a segregated private School for the developmental disabled). It continued when I was in the special education class. Those that were in there we were always excluded from the larger group. They didn't want us to learn because we were retarded (conversation transcript).
The construction of disability began when Percy was placed in a segregated school for children labeled mentally retarded. The feeling of being disabled remained with her throughout her schooling, even when she was transferred to a public school and placed in a special education class.
For Herb, the construction of disability was less clear. However, when he talks about how he was treated in school it is apparent that he was viewed as different. Therefore, it was acceptable to treat him differently from his non-disabled peers.
You're closed down in the world. You're closed out. You are in your own group. What I think is they should be mixed in with everyone else. Even though they may be slow or you know that they might be smart in something. You got to remember we are all handicapped (conversation transcript).
For Herb being educated in a different environment meant being cut off from the world. One way the construction of disability occurred for Herb, was by his placement in a segregated school. He struggles with this because he sees himself as more alike than different. He wonders why others see his disability as the defining factor of who he is and where he should be educated.
A Teacher's Account: The Construction of Disability
Through the process of this research, I have begun to see many examples of the construction of disability in my teaching. Reflecting upon my teaching within special education and one of my student's experiences has further helped me to understand this. When a students of mine, whose name is Kevin, was in special education he was believed to be very dependent on others to complete tasks. For example, on field trips when Kevin wanted to order a soft drink from a restaurant kiosk, he required almost complete supervision to execute the request. An adult had to shadow him throughout the task and prompt him to make the verbal request to the clerk. As his teacher I continued, with great effort, to try and decrease his level of dependence in completing simple tasks. While I was his teacher, we were unsuccessful in accomplishing this goal. I believed Kevin would always need support. After all he was labeled "severely dependently handicapped".
When Kevin began to attend his neighbourhood school with his non-disabled peers, I had time to observe him. On one occasion about six months after his inclusion in the high school, I arrived just before the morning nutrition break. During the ten-minute break, students rushed to the school store to purchase snacks. When the break bell sounded, Kevin left the class independently and headed towards the school store. He, along with at least 80 other students, crowded into the area. I watched Kevin from afar and was astonished at what I observed. Kevin without support successfully ordered and paid for a soft drink. If I had not seen it myself, I would not have believed this was possible. Why could he now do something that we had tried to teach him unsuccessfully to do for four years?
I wondered what the two environments have to do with the way Kevin responded. While in the segregated class, we believed he would always require support. Our efforts were half-hearted because we didn't really think he could do such things independently. In the high school he was treated more like the other students and was required to accomplish many more things by himself. However, there was more at play concerning his learning in these two environments. I believe we had seen him as more disabled in the special education class; therefore, he responded as more disabled. Our attitudes and beliefs about people labeled "severely dependently handicapped" contributed to our expectations.
Theme Two: Stigma of Labels
... labels are arbitrary constructs which purport to describe "reality" but actually shape it according to a cultural preconception (Miller, 1990, p. 67).
The term "developmentally disabled" carries with it perceptions and attitudes about the individuals placed in this category. The attitudes and perceptions are reflective of our culture not of what is inherent in the individual, nor are they objective characteristics of the labeled individual (Sarason & Doris, 1979). Bogdan and Taylor (1987) argue that, "(m)any atypical people are made total outcasts by the social processes conceptualized and documented by labeling theorists" (p. 35). The view that people with developmental disabilities have "internal traits of so-called personal deficits or deficiencies" (Hahn, 1989, p. 227) results from the paradigm that labeled individuals are inferior. The label of developmental disability carries with it a stigma. Edgerton (1967) writes,
The label of mental retardation not only serves as a humiliating, frustrating, and discrediting stigma in the conduct of one's life in the community, but it also serves to lower one's self-esteem to such a nadir of worthlessness that the life of a person is scarcely worth living (p. 145).
These views are based on the attitudes of people who attach these labels to others, rather than to objective conditions (Bogdan & Taylor, 1982). Proponents of disability as a sociopolitical definition believe that developmental disabilities are social and cultural constructs and not something inherent in the individual. The label becomes the all-consuming characteristic that defines the individual.
Labeling is very much part of the education system.
Schools serve as the great labelers in our society, assigning names to children (mentally retarded, emotionally disturbed, etc.) that even if they turn out to be totally inappropriate may have severe negative implications on an individual's failure (Apter, 1977, p. 107).
As a child begins to encounter difficulty in school she is usually referred to experts who are requested to identify the child's difficulty. Often the response is to give the child's difficulty a label. This label increases the child's chances of being referred to a special education class. The focus is generally on providing a label and identifying the child's deficits rather than providing alternative instructional strategies within the regular class.
The case records of students classified as disabled bespeak deficits: "moderately retarded student unable to communicate in complex sentences", "not capable of fully independent living without support"; "has difficulty making friends"; "age 15, reading on grade 2 level"; "poor impulse control, student requires close supervision and management." Such records are littered with deficit labels and statements that sound more like conclusions than prognosis (Biklen, 1992, p. 10).
Percy and Herb: Stigma of Labels
Both Percy and Herb referred to being tested. Herb describes what he thought the purposes of these tests were and what the tests measured.
I remember going to a hospital. I think it was a hospital, a hospital or a university. No, it was a university. ... I was tested like they showed you, you did blocks, and then you did puzzles. They show you pictures of scattered art and they ask you what you thought that picture was. ... To me it didn't bother me. You know in a way I guess it was just for them to find out what my high IQ was and my low IQ. I don't think they were meaning to hurt me or test me. They were just trying to figure out where I belonged. But you know, they didn't really get to spelling and math. You know, they didn't test my skills with that (conversation transcript).
I am struck by Herb's words "... they were just trying to figure out where I belonged" (conversation transcript). In these few words he captures, with clarity, the intent of the testing. I wonder if being "sent away" (Kidder, 1989) was at the heart of this exercise. Was the testing to provide the final ammunition to rationalize why Herb no longer belonged with his 'typical' peers? Herb said, "I don't think they were meaning to hurt me ..." with such a sense of trust. I do not believe the intention was to hurt him, but I wonder as a teacher/researcher how many children have been hurt by the use of IQ tests, as means to determine if a child should or should not be educated with his peers.
Percy's experience is one of wonder. She questions why one would be required to participate in such an exercise.
They wanted to find out what my disability was. I can remember being brought into rooms and I had to put blocks together. The second part of the test, this is funny, I didn't do what I was supposed to do. The first day I did whatever I was supposed to. For some reason the person that was testing me, I could sense that he had a degrading attitude. I felt like he was just doing his job. I didn't want to go (for the testing the second day) because I felt that they were criticizing me. I remember telling him "why don't you just ask me." I was stuttering, but that is what I said. I remember feeling angry, a lot of anger, but I did what I was supposed to, but in the end I pushed all the blocks on the floor. He didn't really do anything. He took my mother into the another room and they talked. They didn't talk to me. I was never included. They never told me the results. They never asked me questions. Like things like 'what do you like' and 'how do you feel' or 'what do you see'. Everything was so structured. You have to go within the structure and you have no room to move. You're like an obstacle (conversation transcript).
The testing used to determine Percy's label caused her to feel unwelcome and worthless. An IQ score was seen to be more valuable than how she felt, saw, and thought about the world around her. The labeling was one more rejection. Percy was expected to perform the tasks, not to question their purpose. I wonder what was written about her response of knocking the blocks off the table. Did this assist the educators to rationalize that she really was not worthy of being with typical children, that her behavior was unpredictable and warranted segregation to protect herself and others?
Neither Percy nor Herb use disability words to describe themselves. These labels are insignificant to them when they describe their lives. It is not that they do not realize that they have limitations, but rather the words do not adequately describe who they are. For both of them, labels do not help others to know them. For example on one occasion Percy, after using the word "retard" said, "I hate that word, but I have to use the word in this instance. I'm using it because that was the past and that is the way it was" (conversation transcript). Pat Worth, Past President of People First Canada, an advocacy group for and by people with developmental disabilities, wrote his views of labels.
"Nobody has the right to label someone 'retarded' he says; "The label is a kind of punishment that stops people from getting jobs and prohibits them from living in the community. It is demoralizing to see someone as a label instead [as] someone," he writes. "I am a somebody. My name is Pat Worth. I am not retarded. I don't think anyone is. I think labels are unnecessary" (Biklen, 1992, p. 11).
For Percy and Herb their experience has been that the label 'disability' became the all-defining characteristic of whom they were. It determined where they went to school, whom they associated with, and where they played. The social construct of disability haunts their past, present and future.
A Teacher's Account: Stigma of Labels
In reflecting on my experience as a special education teacher and in listening to Herb's and Percy's stories, I gained new insight, a spirit of "revision" (Connelly & Clandinin, 1988) as to what my awakening had revealed to me. As a special education teacher, I practiced under the assumption that disabilities are inherent in the individual. My personal awakening brought forth an understanding that, as a teacher, I operated with the stereotype that people with developmental disabilities were less worthy, less equal.
As a teacher, rejection rather than acceptance framed my relationships with students. This statement sounds harsh; however, I believe this is reflective of the image I had of the students. Their labels were central in our relationship. They were worthy of instruction but only in a segregated environment for they were disabled and were different from the other children in the school. They needed to be separate from their peers for they may have disturbed or interfered with the 'typical' students' learning. My research with Percy and Herb contributed to my "awakening" and helped me understand how viewing children with developmental disabilities as less worthy was destructive. Viewing the child's label as the most salient characteristic could and would limit their potential. The label was destructive in helping me as a teacher to best educate and develop relationships with my students.
ThemeThree: Self-Fulfilling Prophecy
The label "developmental disability" carries with it a stigma. Labeling a person as developmentally disabled also creates a self-fulfilling prophecy (Taylor & Bogdan, 1989). Role expectations are placed upon the people within these circumstances. Wolfensberger (1972) found that people generally play out the role in which they have been cast.
This permits those who define social roles to make self-fulfilling prophecies by predicting that someone cast into a certain role will emit behavior consistent with that role. Unfortunately role-appropriate behavior will then often be interpreted to be a person's 'natural' mode of acting, rather than a mode elicited by environmental events and circumstances (p. 16).
The roles in which we are cast have considerable effect on our behavior. Wolfensberger (1972) refers to the work of Rosenthal and Jacobson (1968) to illustrate how powerful role perception is on the development of children. He goes on to say:
... it appears quite consistent with the well-documented fact that retarded children who are placed into special classes underachieve grossly when compared to their retarded peers, who are carried along in regular classes even without any special attention (p. 31).
The role perceptions and stereotypes not only affect the behaviors of those labeled but also those who surround the labeled individual.
Of great importance ... are labels, concepts, stereotypes, role perceptions, and role expectations that are applied to a person and that often determine the circularity between his own self-concept, the way others react to him, and the way he is likely to respond (Wolfensberger, 1972, p. 31).
Percy and Herb: Self-Fulfilling Prophecy
Yeah and we were learning these cue cards every time. It seemed like it was never ending. It was like we were learning the same words over and over. If we did a good deed, you would get a star and after so many stars you get a choice to pick a toy. Yeah a toy. She used to treat us like little kids (Herb's conversation transcript).
In each of our conversations Herb spoke of his struggle with being required to do the same work over and over, as well as of his questioning of the work he was required to do. He wanted the teachers to provide him with more challenging work but due to the perceived view of his ability, he was relegated to do simple repetitive work.
For Percy there was a feeling that the work she was required to do was of little worth. She was not given the opportunity to learn the same subjects or content that her non-disabled peers were taught.
In terms of I never learned anything. When I was in New Hope I remember learning how to wash the dishes. ... The men had shop and we had cooking and learning how to wash the dishes and sweep the floor. ... They called it social studies, it was basically, they didn't teach what the other students learned. It was always Mickey Mouse stuff (conversation transcript).
The placement of Percy and Herb in segregated education contributed to the devaluation of their perceived worth. They were educated in environments where the prevailing attitude appeared to be that individuals with a developmental disability were not expected to learn. This attitude is the underlying principle of a self-fulfilling prophecy. This self-fulfilling prophecy operated to produce their sense of inadequacy to learn.
A Teacher's Account: Self-Fulfilling Prophecy
As I listened to Herb's account of doing the same work over and over and to Percy's feeling of doing useless work, my mind was filled with teaching memories. As a special education teacher I believed that repetition and direct instruction (not always in context), was the most effective way to instruct students who had been labeled autistic (Jordan, 1972; Koegel, Rincover & Egel, 1982; Snell, 1978). The instructional programs in the class were designed with this in mind. Teaching was based on the students' perceived deficits and we taught to these specific skill deficits.
Kevin, one of my students, had limited communication skills. A program was designed to increase his vocabulary. Every day, for 15 minutes, he was shown pictures that he was required to label. My memories of these lessons were of their tedious nature. Kevin never refused to do the task and his vocabulary did not develop extensively. However, when Kevin was integrated into his neighbourhood high school, it was reported by his mother that he was more enthusiastic about his learning and that his desire to communicate with others had increased drastically. Once Kevin was included in classes with his non-disabled peers the goal of increasing his vocabulary was still relevant. However, rather than isolated lessons with flash cards, the regular class environment provided a rich array of language as a model to stimulate his vocabulary.
The instruction in the special education class was framed on the belief that Kevin would learn little and, therefore, we needed to target the most important skills he needed and to drill them until he learned them. The approach actually limited his learning and motivation rather than increased his skills. The approach was never changed nor questioned because of the belief that Kevin had a limited capacity to learn. Therefore, we targeted what we deemed as the most important skills. When he moved to his community school, Kevin exposed all the myths about his capability to learn. In his inclusive school environment he quickly learned many of the skills he was drilled on for the four years in my class.
Theme Four: Distancing People
Research in special education supports the perspective that individuals labeled developmentally disabled are different than their non-disabled peers (Fuchs & Fuchs, 1994; Shanker, 1994). From this assumption, there is a rationale that disabled students should be segregated from their non-disabled peers. The exclusion of children from the regular stream usually means placement in a special education class.
devalued because it is necessary to educate them in a different environment. According to Wolfensberger & Thomas (1983) special education classes may contribute to further devaluation of a student already at risk of devaluation and rejection because of their disability. The practice of grouping students with special needs increases the potential of their devaluation.
Percy and Herb: Distancing People
Percy speaks of how being taught in a separate environment contributed to others seeing her as being devalued and rejected.
Percy's insight into how rejection is constructed is profound. For Percy, the heart of the matter is that how one is treated gives others a clear message. Keeping students with developmental disabilities apart gave the non-disabled students permission to reject the students in special education. Rejection is an experience we all encounter in school, but rarely has it been because of the way educators structured the learning environment. For Percy, rejection was in the hands of the adults. The belief that children with disabilities are best kept apart set the stage for her rejection to occur.
For Herb distancing came in the form of direct rejection by his peers. The fact that he traveled away from town for schooling added to the stigma. The exclusion of Herb from his community school contributed to his peers' belief that Herb was different, therefore it was okay to reject. This rejection was difficult for Herb, for I sense that being in relationships with others is a very important way of knowing for him. To be rejected by others was disturbing and uncomfortable for him.
Like after school I used to drive into town. I took the bus home. That was really hard on me because the kids used to pick on me ... The students were not the best. They didn't really care for the most of us. ... that's where I just know, I just thinking about it, I wasted a whole year (conversation transcript).
A Teacher's Account: Distancing People
In my reflections I became aware of how rejection is constructed through seeing one of my lived stories from a different perspective. I had taught for two years in a self-contained special education class for students labeled "autistic". Most of my students were able to converse with others and were working on academic skills from the grade one to grade six level. These students played on the playground and attended whole school functions with the rest of the school population. However, interactions between my students and the rest of the students were minimal.
In my third year at the school, two students, both considered "severely developmental disabled" began to attend the school. Their parents had requested they be included in a regular class rather than in a special education class. One was placed in the grade one class, while the other was placed in the grade three class. Both used wheelchairs to get around and neither could communicate using words. In the classroom their work was very different from their peers. The teachers focused on ways to help the students feel part of the class and to find personal connections with the instructions.
What struck me about their inclusion in the school was the way the general student body responded to them. They had only been in the school for six weeks and already most of the students knew them by name and approached them in a friendly manner in the hallway. On the playground they were surrounded by their peers who would eagerly push them around. It was wonderful to see. However, on reflection, it was clear this was not the experience my students had. They had been at the school for two years and no one seemed to know their names and rarely did anyone talk to them in the hallways. There was a discrepancy between experiences of the integrated and segregated students in the school.
I now see that the general student body understood the students' who were being educated in the self-contained special education classrooms in different ways than the two students placed in the grade one and three class. Why did this happen? My students and these two students were all labeled developmentally disabled. However, the two students in the regular classrooms seemed to be more valued. The school had constructed socially valued roles and life conditions (Wolfensberger, 1972) for these two students. Being placed in the regular classrooms decreased the stigma of their negatively valued label. These two students were in grade one and grade three, not in the "autistic" class taught by the "autistic" teacher.
Wolfensberger & Thomas (1983) state that you need to understand the concepts of deviancy and devaluation to understand why being placed in the regular stream would be seen as a more valued social role and condition.
A person can be considered "deviant" or devalued when a significant characteristic (a "difference") of his/hers is negatively valued by the segment of society that constitutes the majority or that defines social norms. While numerous differences do exist among individuals, it must be clearly kept in mind that difference by itself does not become a deviancy unless/until it becomes sufficiently negatively valued-charged in the mind of observers. Thus, deviancy can be said to be in the eyes of the beholder, and thus is also culturally relative (p. 23).
My teacher education was structured around the belief that the best way of educating children with developmental disabilities was in a segregated environment. I could not see students with developmental disability as being accepted as equal to their non-disabled peers. When I experienced this situation it did not bother me that the students labeled developmentally disabled were separated from the other students in the school. As an educator in special education I failed to question the place of segregation as an historical and social construct. I accepted the special education structure as appropriate.
The focus on exclusion has allowed for a one-sided focus with an abundance of literature that supports rejection rather than acceptance of people with developmental disabilities (Bogdan & Taylor, 1989). The social science perspective of deviance has become so widely accepted that there is minimal literature focused on the construction of acceptance, such as, the acceptance reflected in the stories of the two integrated students. At the time when I was faced with the two scenarios, integration and segregation, I was not distressed that my students were viewed as less valued. I did not even see it. At the time, I had a strong affiliation to the perspective that separate was better and not harmful. To maintain this point of view it was necessary to ignore what was occurring for the two children in the regular classes and to just believe that it was a fluke. It was easier to believe that this was an unusual situation and that there were still many benefits to segregation that would warrant my continued commitment to it.
It has taken much reflection and many experiences of seeing the benefits of inclusion for me to see that, "(s)schools devalue individual differences by excluding children with special needs from regular programs "(Blatt, Biklen & Bogdan, 1977, p. 109). As a teacher I have had to face this fact and to consider what it meant to me. I have had to decide if I wanted to contribute to the type of experiences Percy and Herb encountered, or to help create opportunities for children with developmental disabilities that reflected the two children's experiences in the regular classroom. Over time it has become apparent that it is the latter I am interested in pursuing.
And Today......
Many may argue that Herb's and Percy's school experiences are just a product of the time. Some may say that attitudes have changed significantly. However, I am not convinced that things are much different. The views that shaped the education program when Herb and Percy were in school are still prevalent in today's society. The following statement from the Alberta Teachers' Association report called "Trying To Teach" (1993), demonstrates how some teachers view children with developmental disabilities as a burden to society as a whole.
An example is a dependent handicapped autistic 11 year-old boy who was integrated in my Junior Adaptation classroom. He was functioning at about 20-months-old level, with an approximate IQ of 25-30. Although appropriate programs focusing on his level of functioning were available and recommended, his parents adamantly decided it would be better for him to be integrated. The boy had also been integrated in our school for the two previous years. The cost of educating him, taking into account aide time, teacher time and consultant's time, was between $25,000 to $30,000 per year. In short, it cost between $75,000 to $90, 000 to educate him during the three years that he was at our school. Had he been in an ability appropriate program he would not have required a full-time aide and would cost far less money. Monetary cost was not the only "cost" of this integration. It reduced the overall preparation time that I had for the other students' program because I was responsible for setting up and monitoring two distinctly different programs. The students additionally "lost out" in learning through the number of disturbances created by this student. He would frequently cry out, make whimpering sounds, bolt across the room, lie upon the floor and giggle, and attempt to masturbate. How does this promote excellence in education? (p. 5).
While this view reflects a minority of those working with students with disabilities, the influence of such statements can still be destructive. This story is of the rejection of yet another student. Statements such as "a dependent handicapped autistic 11 year-old boy who was integrated in my Junior Adaptation classroom. He was functioning at about 20-months-old level, with an approximate IQ of 25-30" is simply name-calling. There is no child in this telling. This story is about defeat and unwillingness to see a child outside of his labels. These words do not describe who this boy is and what he is able to learn. This paints a picture of a very devalued child. The blame of the placement of this child, which the teacher deems inappropriate, is put upon the parents. Neither parents nor child are given voice. The teacher's voice is more valued than those most affected.
When I read this piece I was struck by the teacher's comments that this child was integrated into her adaptation class. I struggle because this teacher is teaching in a segregated classroom. The teacher discriminates among children with disabilities. The system is so compartmentalized that someone could even be excluded from special education classes. Is this what happened to Percy and Herb as they spent their time being moved from place to place? They too were excluded from the regular class but also were sent away from segregated classes.
Using the argument that the education of this child is a drain on the financial resources of a school board directly contradicts the notion of equal access to education for all children. If we seek to deny one child an education on the grounds of inadequate financial resources, we must deny them all.
This attitude toward children with disabilities has also been expressed in more public forms such as in local newspapers like "The Edmonton Journal" . These articles speak of children with disabilities as less than worthy.
Trying every method to teach every possible individual would be horrendously expensive - and the only way it could be done would be by robbing school programs intended for "ordinary" children and special-needs children who have demonstrated capacity to learn (Elliot, 1987, p. A13).
Further articles argue against the worth of spending valuable dollars on the education of disabled students.
In fact, school districts - particularly districts such as Edmonton Public which attracts a disproportionate share of children with special needs - have to supplement the grants. And that means they have to rob other programs. There is no doubt that the choice is extremely tough. But when money is limited, difficult choices have to be made. Which will be it? Spending as much money as it takes to accommodate children whose handicaps are so extreme that they are barely able to react- or using the money to ensure a higher standard of education for children who can benefit? (Elliott, 1987, p. C1).
This journalist argues that labeled children are not worthy of the finite dollars available for public education. She argues that we must face the fact that some children are not worthy of our time and money and we should stop wasting our energy on them. When mainstream media publishes such statements for public consumption, how can children with labels be expected to survive in an environment that promotes and allows such horrific things to be said about children? There has been little or no public outcry against these statements. For these children in society are:
... children who do not attain intellectual achievement according to the established schedule and are considered failures, no matter what their other qualities and sensitivities (Miller, 1990, p. 70).
These writings remind me of the "... significant role of language as a tool of social control..." ( Darder, 1991, p. 140). They present a picture of students who are devalued who are not worthy of the scarce dollars that should be preserved for the "status quo". Percy's and Herb's school stories reflect a world of rejection and exclusion. Their education was founded on the assumption that students with developmental disabilities are passive recipients with limited capacity for academic achievement and personal relationships. As I look around me today and see the continued rejection of people with developmental disabilities, I am saddened for I wonder if Herb's and Percy's wishes will come true.
Conclusion
Policies of the time and still today were developed without addressing or confronting the school districts' historical practices and assumptions about students with developmental disabilities. The education policies for students with developmental disabilities usually rest upon assumptions, which are wrongly presented by policy makers as sociological truths.
Skrtic (1991) says the prevailing assumptions about disabilities and special education are that disabilities are human pathologies; diagnosis is objective and useful; and special education is a rational system that serves diagnosed students. Hahn (1989) states that research in special education has been focused on a "functional limitation" model which supposes that the disability resides in the individual and the solution to the disability is to transcend these deficits to the maximum extent possible.
Lipsky and Gartner (1989) found, "Unanimously, disabled students and parents of students in every educational setting complain that adapting and accommodating to disability all too often resulted in lowered expectations and patronization" (p. 184).
Through my research with Percy and Herb I have been reminded of my responsibility as a teacher to focus on the accepting relationships between student's with and without disabilities. I must work towards creating these relationships. For Bogdan and Taylor (1990) an accepting relationship is;
... one between a person with a deviant attribute and another person, which is a long duration and characterized by closeness and affection and in which the deviant attribute (e.g. disability) does not have a stigmatizing, or morally discrediting, character. Accepting relationships are not based on a denial of differences but rather on the absence of impugning the different person's moral character because of variation (p. 191).
I believe the focus on the sociology of deviance and rejection has been more prevalent in my understanding of people with developmental disabilities. This is reflective of the questions I have focused on in my research and teaching. To make a difference for students with disabilities I believe it will be incumbent upon me in my teaching to be attentive to how acceptance is accomplished. To do this it will be necessary to work in classrooms where a more diverse group of children are welcomed. It is the positive examples now that I believe will further expand my understanding of my role as a teacher in creating spaces for children not to experience what Percy and Herb were made to endure.
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