4 Harsha Kathard, Mershen Pillay, Michael Samuel and Vijay Reddy GENESIS OF SELF-IDENTITY AS DISOTHER: LIFE HISTORIES OF PEOPLE WHO STUTTER Harsha Kathard*, Mershem Pillayi, Michael Samuel 0 amd Vijay ReddyD •Division of Communication Sciences and Disorders, University of Cape Town, South Africa $Sheik Khalifa Hospital, Abu Dhabi, United Arab Emirates ° School of Educational Studies, University of KwaZulu Natal, South Africa nHuman Sciences Research Council, Pretoria, South Africa ABSTRACT This paper explores the processes shaping self-identity formation as DisOther and the actions of participants who stutter. It illuminates the experiences of adults who stutter using a biographical, narrative, life history methodology. The participants were seven South African adults of diverse racial, social and economic backgrounds from KwaZulu Natal, South Africa. Five males and two females were invited to participate via purposive and convenience sampling processes. Their stories of living with stuttering in their life worlds over time were constructed via biographical interviews using personal, social and temporal lenses typical of life history methodology. The interviews were audio-recorded and transcribed. The data were analysed at two levels using a combination of strategies. The first level entailed a narrative analysis that was represented as research stories for each participant. The cross-case and thematic analysis of research stories constituted the second level analysis of narratives. The findings explain the complex and interrelated personal and social processes over time which contribute to the genesis of self-identity formation as DisOther. Social inscriptions of difference occurred in immediate home, school and work contexts over time via multiple processes such as labelling, norming, judging and'teasing. Personal processes included discoveries of difference via critical events, repeated reinforcement of difference, self-judgement and temporal burdening. Furthermore, the actions participants took in negotiating stuttering were examined. The implications of the findings and limitations of the study are presented. Key words: self-identity formation, DisOther, People who stutter, life history. INTRODUCTION This paper illuminates the processes shaping self-identity formation as DisOther of participants who stutter and their actions in relation to their self-identity, using a narrative life history methodology. The term "DisOther", constructed by Pillay (2003), was appropriated in this paper to refer to an individual's understanding of himself as problematically different because he/she stuttered. The term was derived from two sources. Firstly, the term "Other" refers to instances when an individual manufactures himself as problematically different in a particular context (Boehmer, 1995). It carries a meaning of an individual feeling he/she has intrinsically less value. Secondly, the prefix "Dis" refers to instances where the indivi- dual feels different, threatened, destabilised and disempowered on the basis of his disorder, in this instance, the disorder being the stutter. The rationale for this study emerged from two central concerns. Firstly, there has been limited research on the personal and social dimensions of the stuttering experience. Quesal (1989) challenged the professions' researchers for a lack of engagement with the core psychosocial and personal concerns of People Who Stutter (PWS) in an article aptly titled "Have we forgotten the stutterer?" He argued cogently that as a consequence of difficulties in quantifying psychosocial factors these issues were being interpreted as a lack of reality, that is, if we can't count or measure it, it does not exist. Over time, the importance of personal experience research has been recog- nised and research on varied dimensions has gathered gradual momentum (Corcoran & Stewart, 1998; Crichton-Smith, 2002; Die Suid-Afrikaanse Tydskrif vir Kommunikasieafwykings, Vol. 51, 2004 Kathard, 2003; Petrunik & Shearing, 1983; Sue-O'Brien, 1993). Research on dimensions of Self and stuttering viz. on self- conception and self-esteem has been a source of professional research interest over time (Green, 1997; Green, 1999; Kalinowski, Lerman & Watt, 1997; Van Riper, 1982; Yovetich, Leschied & Flicht 2000; Zelen, Sheehan & Bugenthal, 1954). While these studies have examined varied dimensions of self- concept, they have not researched the processes shaping self- identity formation over time. Furthermore, they differ methodologically from this study because they relied on quantitative methodologies to understand varied relationships between self-conception and severity (Green, 1999) and assess- ments of self-esteem (Yovetich, Leschied & Flicht, 2000). Green (1999) however, suggested that complex relationships between environmental, personal and behavioural factors influencing the self-conception of children could be enhanced by drawing on experience histories of PWS. This study expands the methodological toolbox by introducing narrative biographical methodology in exploring self-identity formations over time. Secondly, the profession of Speech-language pathology has the responsibility of intervening with PWS and requires a relevant personal experience knowledge base to inform intervention. Adults who stutter, like all people with commu- nication disorders, present a challenge to the clinician'because they bring a lifetime of experiences into the clinical relation- ship. Interaction with the client's life experience is an important prerequisite for intervention (Bloodstein, 1995; Van Riper, 1982). The limited research thus far could be attributed to the methodological tradition of the profession that has relied R ep ro du ce d by S ab in et G at ew ay u nd er li ce nc e gr an te d by th e P ub lis he r (d at ed 2 01 2) Genesis of Self-Identity as DisOther: Life Histories of People who Stutter 5 primarily on positivist, quantitative and experimental designs (Mowrer, 1998; Perkins, 1997; Pillay, 2003). Silverman (2001, p. 4) provides a succinct critique of how the research outcomes within a positivist frame have (not) served clinical practice: The fact remains that people seeking help with stuttering problems are just that - people. And the information that therapists have from those conducting research and writing books i.e. the means, standard deviations, etc. simply don't address that fact very well. The Method of Science with all its assumptions about reality from a human perspective including the need for objectivity of the so-called observer, linearity of experience and the uses of inferential and descriptive statistical analyses to interpret observations simply can not, at this point in space-time, generate information completely useful to modify behaviours of multitasking, complexly functioning human beings. Personal, more than impersonal, knowledge is required to inaugurate, modify, stabilise and maintain behaviour change. Narrative methodologies are robust ways of researching experience (Plummer, 2001) because stories best facilitate researchers' understanding of experiences (Clandinin & Connelly, 2000). Sacks (1995, p. 25) explained the value of the self-story in understanding how people live with an impairment/ disorder and the actions they take, "Ask not what disease the person has, but rather what person has the disease." The answer to the first question is a monological chart (about disorder/ impairment). The answer to the second question will always be a story. Unlike disease, no two people will have the same story. He proposed that the study of identity and disease/disorder could not be separated in personal experience research. Researchers therefore should attend to the important "Who am I?" question as a basis for understanding how the person makes sense of his/her worlds and how he/she acts. Life history methodology1 is useful in exploring self- identification formations because it admits the personal, temporal and social dimensions of experience. It attends to the critical temporal dimension 'of self-identity formations by considering the changing life cycle of the individual to be taken as'a single unit of study (Hatch & Wisniewski, 1995). It foregrounds the connection! of the experience to social circumstances and positions the participant as an active storyteller, thereby allowing for an explanation of social action from a personal perspective. : There are many theoretical debates about the notion of self-identity which are beyond the scope of this paper. Therefore, the theoretical frame adopted in this study is presented here. Self-identities only become identities when people internalise them (Mishler, 1999). Therefore, the concept of self-identity must be differentiated from roles and role-sets. While people may have many roles, identities are sources of meaning that actors construct for themselves through processes of individuation. Although identities may coincide with roles, identities are stronger sources of meaning (Castells, 1997). Self-identities are always in a state of process, of "becoming" (Mishler, 1999). The term "formation" was chosen to reinforce the process orientation of the self, past, present and future. It shifts away from the stage model of development which have traditionally enforced a rigid, orderly universal Ά fuller explanation of the application of life history methodology can be found in Kathard 2003. and progressive understanding of self-identity formations. Identities have the capacity to be stable or flexible over time (Valsiner, 2002). The process of narrative self-identity formation occurs by drawing together the overlapping cognitive, emotional, temporal, · relational, macro-structural, cultural, institutional, and moral dimensions, i.e. the personal and social influences (Somers, 1994). Social psychology theorists (Howard, 2000) have emphasised issues of ethnicity, gender, class, age, disability, race, and geography in shaping self-identity formation. Societies are multiple, fluid and changing and it is within this relational social matrix that self-identities form. Within the relational matrix, the impairment/bodily dimen- sions (in this instance stuttering) are socially interpreted. In traditional medical science, disorders have been studied without the Self. The notion of self-as-embodied however, humanises the body and dissolves the traditional boundaries between body/impairment, self and society. When impairment or disorder exist, People With Disabilities (PWD) are constructed as an epistemological "Other" (Perry, 1996) at the social interface. Goffman's (1963) theory on spoiled identity has been used to understand experiences of disability or "Otherness". A person who is stigmatised is a person whose social identity or membership to some social category, calls into question his or her full humanity - the person is devalued, spoiled or flawed in the eyes of others. "Othering" (Fine, 1998) does not occur only on the basis of impairments, but also on dimensions of race, gender, sexua- lity, class or education. However, in research with disability there has been a tendency for the emergence of neat, clean and categorical understandings of identity foregrounding disability. Such understandings mask the complexity of identity forma- tions in PWD. In the light of such social complexity the moral impulses of self-identity formations must be understood against the backdrop of societal norms and values. Frank (2002) empha- sised the importance of listening to the moral impulse of the self-story because self-identity formations are reflective of the social-moral debate i.e. Who am I? and what it means to be good or bad in a society. It would also seem important to explore how participants negotiate stuttering in relation to their self- identity formations. "I act because I am" suggests that the actions of individuals should be linked with their identity formations. It was also of value to understand why people act as they do and to guard against limiting understanding to universalist, essentialist notions (Somers, 1994), for example expecting that all PWS will act the same way. This stance makes provision for participants with impairment to be understood as agentic (Frank, 2002), in contrast to passive, pathology-based stereotypic views. METHOD Aims The aims in this paper have been extrapolated from a larger study. In the study, the self-identity trajectories as Able/Potential and self-identity as DisOther emerged i.e. participants under- stood themselves as Able and as DisOther. This paper is limited The South African Journal of Communication Disorders, Vol. 51, 2004 R ep ro du ce d by S ab in et G at ew ay u nd er li ce nc e gr an te d by th e P ub lis he r (d at ed 2 01 2) 6 Harsha Kathard, Mershen Pillay, Michael Samuel and Vijay Reddy to the exploration of processes of self-identity formation as DisOther and thus the aims were: 1. To explore the processes over time shaping self-identity formation as DisOther of participants who stutter. 2. To illuminate the actions of participants in the context of their self-identity formations as DisOther. Participants Participants in the main study were required to be adults (over 18 years of age) who had stuttered since early childhood, as the intention of the study was to explore the experiences of stuttering over their life courses. They had to be willing to share their stories in a voluntary capacity and indicate their commit- ment to participate in a process requiring prolonged engagement. Furthermore, they were required to have information rich stories (Plummer, 2001), and English as a functional language of communication. The researcher was English-speaking and because the interview process required close and interpretive communication, it was felt that a shared language between participants was essential. Participation was invited through a combination of purposive and convenience sampling procedures. Participants were recruited via local hospitals, private practices, the university, and the local stuttering self-help group. Of the 10 people sampled, 7 met the criteria for selection. The profiles of participants are summarised in Table 1. The information reflects the status of the participants at the time of the study. The severity of stuttering was determined by participants' self-rating of stuttering severity at the time of the interview. Data Production The data was produced via interviews with each partici- pant. At the outset,the nature of the research process, voluntary participation and withdrawal, communication (for example, conversational repair strategies, formality of the conversation) and confidentiality were discussed. The management of power imbalances inherent in the research context was negotiated with participants with the intention of developing a respectful research relationship (Measor & Sykes, 1992). The process commenced after participants had a full understanding of the research process and had consented in writing. A semi- structured, open-ended life history interview schedule was constructed to support the interview. In narrative research, the researcher features as an instrument (Hany, 1996) and it was necessary for the researcher to be reflexive and critical (Peshkin, 2001) about how she was influencing the data pro- duction process. This process was monitored by peer critique and reflective memo-writing (Charmaz, 1995). In particular, the researcher had to be cognisant of the need to be non-judge- mental and to appreciate the uncertain nature of the interview process. A Panasonic mini-cassette tape-recorder (RQ-L30) was used to record all interviews. The interview process unfolded differently with each participant. In general, the initial session was used to establish rapport and to place the interview within the context of the study. In subsequent sessions, participants were asked to relate their stories beginning with their early experiences of stuttering and how they acted. A strict temporal line was not pursued because participants moved back and forth through their expe- riences. The process was deliberately open to allow participants to select the issues and events they felt were most important. The researcher probed these aspects further using matrix-type probing techniques to explore critical interfaces between the personal, temporal and social dimensions of experience. It was necessary to constantly monitor the potential for power imbalances in the interview and to create a discursive space in which participants felt comfortable in sharing their stories. The interview process was considered to be an inter- pretive conversation (Josselson, 1995; Fine, 1998) in which the researcher and participants were engaged in a process of joint meaning-making. This conversation required an empathetic listening and "sensing" and "connecting" (Kathard, 2003) with participants. Each interview lasted for approximately two hours and the total interview time for participants ranged from 6 hours to 10 hours. Participants were each interviewed an average of three times. Table 1: Biographical profiles of participants Participant Gender Age Residential Area Race Severity of stuttering Therapy Occupation / Education | Gareth Male 65 Durban White Mild Yes Retired architect; , University Hennie Male 29 Pinetown White Moderate to severe Yes Accountant; University Siyanda Male 32 Inanda Black Moderate No Director: Arts Association; High School: Standard Nine Thabo Male 19 Ashdown Black Severe Yes University student Kumari Female 36 Shallcross Indian Mild No Accountant; University ' Sagren Male 32 Pinetown Indian Moderate Yes Manager; University Nontokozo Female 20 Umlazi Black Severe Yes University student Die Suid-Afrikaanse Tydskrif vir Kommunikasieafwykings, Vol. 51, 2004 R ep ro du ce d by S ab in et G at ew ay u nd er li ce nc e gr an te d by th e P ub lis he r (d at ed 2 01 2) ^ Genesis of Self-Identity as DisOther: Life Histories of People who Stutter 7 Data analysis Each interview was transcribed verbatim from audio-tape recordings for each participant. The accuracy of the transcrip- tions was checked by the researcher and a research assistant to ensure the actual words spoken were correctly transcribed especially when speech intelligibility was influenced by a stutter. The written transcripts constituted the data and were subjected to analysis. Given that the written transcription can never be a faithful copy of the interview (Kvale, 1996), the researcher interacted with the written transcriptions as well as the audio recordings and memos. The data analysis was conducted at two levels. The first level entailed a representational narrative analysis (Freeman, 1996; Polkinghome, 1996). In narrative analysis, the raw data are configured by means of a plot into a story, thereby moving from elements to stories to explain a particular end. The product reflects a temporal ordering in which each part is given meaning via its reciprocal relationship with other parts, before and after, and to the whole. The plot facilitates the composition of events into a story (Polkinghome, 1995) by: • clarifying the meaning events have as contributors to the story; • providing criteria for the selection of events/issues to be included; • delimiting the temporal range which marks the beginning and end of the story; • providing temporal ordering and unfolding of events leading to a conclusion. This level of analysis was represented as a research story for each participant. The second level of analysis involved a mixed strategy (Reddy, 2000) of grounding the analysis within the individual case as well as constant comparisons across cases. An iterative strategy of analysis was used (Charmaz, 1995). The researcher moved backwards and forwards between the interview data, I research stories and emerging categories on a continuous basis to generate constructs and themes. Two processes of validation were used in the study viz. substantive and ethical validation. Substantive validation was concerned with issues of trustworthiness and goodness of interpretive research (Angen, 2000) and required consideration of issues like suitability of methodological choices, credibility, dependability and authenticity trail (Creswell & Miller, 2000; Lincoln & Guba, 1985). In contrast, ethical validation was concerned with the moral issues the researcher must entertain. This study utilized Lincoln and Guba's (1985) guidelines to enhance substantive and ethical validity. • Member checking was used during the interview process to confirm technical details, obtain clarity on particular issues and to verify the researcher's inter- pretation of the story. Participants also had access to the transcripts and were provided with two versions of their research stories. They were invited to comment on the trustworthiness of the representation of their stories and their comments were taken into consideration in further revision of their research stories. • Prolonged engagement (Plummer, 2001) ensured that the data was collected in a rigorous manner. This engagement included a few indepth interviews which totalled several hours as well as ongoing consultation with participants over time, extending over a year. • Peer debriefing and critique was done by two research colleagues with Speech-Language Pathology back- grounds, and one researcher with life history research experience. They were familiar with the study and provided guidance throughout the research process to ensure that it was rigorous, fair and thorough. • Thick descriptions of empirical data were provided and represented as research stories. Thick descriptions capture detail, density and depth to create a sense of verisimilitude so that the statements and stories can bring the experience to life. The reader then feels as if he/she could experience the events being described (Charmaz, 1995; Plummer, 2001). • Procedural dependability was ensured via an audit trail analogous to a fiscal audit. All aspects of the research process were monitored by two peers (life history researchers) external to the study to confirm that the research process was systematic and rigorous. Ethical validation addressed potential power imbalances during the research process. The fairness criterion (Lincoln & Guba, 1985) attempted to ensure that the interview process was fair, that voices were not demeaned, silenced and that the potential power held by the researcher or participant was restrained. The research study received ethical clearance from university authorities and informed consent was obtained from participants after clarifying issues of confidentiality, voluntary participation, withdrawal, risks and benefits. Member checking, open communication and self-critique characterized the interaction to enhance ethical validity. A counseling support system, external to the research process, was available if participants felt the need for support. As every research process has potential to touch the participant in some way, there was a vigilant effort to reduce harm (Frank, 2001). RESULTS AND DISCUSSION The presentation is arranged in relation to the aims of the study. The data are represented as excerpts from the biographical research stories of participants. The emerging issues included: ·. Discovering difference and the emergent self-identity as DisOther ° Processes of strengthening, reinforcing and sedimenting self-identity formation as DisOther • Negotiating self-identity as DisOther (Action) Discovering difference and emergent self-identity as DisOther All participants in this study began to stutter during the preschool years with the onset of stuttering occurring before 6 years of age and with differing degrees of severity. The primary intention was to examine the circumstances through which participants began to discover themselves as different. Critical incidents and contexts for discovering difference I remember the first day I discovered the stutter. This happened when I was in Grade Two, about seven years old. I was The South African Journal of Communication Disorders, Vol. 51, 2004 R ep ro du ce d by S ab in et G at ew ay u nd er li ce nc e gr an te d by th e P ub lis he r (d at ed 2 01 2) 8 Harsha Kathard, Mershen Pillay, Michael Samuel and Vijay Reddy Table 2: Incidents and events leading to the initial discovery of self as different Participants Critical events and primary contexts Age: discovering difference Age: onset of stuttering Siyanda School: teacher punished him for not speaking on cue 8 3 Kumari Home: Child abused by alcoholic father, was silent and then stuttered. She understood stuttering as a sign of fear and disempowerment 4 4 Gareth Home: Parents' extreme concern at a young age about speech fluency 4 3 Sagren Home: Early concern at home about poor speech development 3 3 Thabo School: mocked by class mates when unable to read 7 4 Nonthokozo School: Critical incidents of feeling different within a new school environment and referral for treatment 13 5 Hennie School: High school years: adolescent identity questioning 12 5 reading a book in front of the children in class. I was very shy and nervous and as a result I started stuttering suddenly. The children started to laugh. At that moment I wished the ground would just open so I could get under it and die. I was so very hurt that I nearly cried too. At first I didn 't even know what the stutter was. I didn't even know why they were laughing. That was the beginning of my nightmare. Before that day I knew nothing of the stutter. No one at home said anything about it. (Thabo) At home, the way we spoke, with our stutter, wasn't a problem. Outside home it was a different story. I was about eight years old. We went to school in Umlazi, an African township, in the 1970s and the rules were strict. One of the English teachers asks a question. If you don't know the answer then you stand up. He asks me a question. I am in the process of a stutter. I am trembling and I can't get it out. He hits me. That is my first memory when I was punished for not answering a question on time because of the stutter. I broke the rules. (Siyanda) I started to stutter when I was young, around three or four years old. I was a very sensitive little chap and remember my parents worrying about my speech. I knew something was wrong. I suspect it was bad from early on. They said the usual fatherly and motherly thing like "Slow down, take your time". I was aware of the stuttering at that stage but I don't think I was too troubled by it... At the time, on some occasions there were these verbal collisions at home. My parents, both of staid English backgrounds, were a difficult match. So, a degree of collision took place.! When these mws were on, for me, a sensitive little boy, it was like the end of the world. I don't know how it was for my older brother. Those collisions made more of an impact on me then, than did my faulting speech. (Gareth) I started talking very late, when I was four years old. Girls normally speak early but I didn't. There was a reason for this which only I know. My family wondered what was going wrong. They thought I might have a problem with my ears or tongue or brain. They were wrong. It was FEAR, a gruesome, monstrous, all-consuming fear that silenced me. I never spoke for four years. When I did, it came out ssssstuttering. Fear caused my stuttering. The fear was like venom, which spread quickly to every part of me, every crevice of my mind, body and spirit. A deep-seated ugly, emotional fear. I tried hard to shrug off but it still lurked in me, unrelenting. What caused this fear? The MAN of the house, my father. (Kumari) I always had a small stutter but the problem started in high school in 1982. My parents sent me to a Convent boarding school. This was a very big change for me. I didn't want to go there. Everything was so strange. The school was run by white German nuns. The nuns were very strict. We follow rules. They spoke English. We were Black, Zulu speaking girls but only allowed to speak English. You couldn't go off the school premises. I was free before. Wake up early. Walk in a straight line. Behave like girls. Sleep early. I was sad and out-of place and the stutter became very severe. From a hiccup I went to having big, long blocks. (Nontokozo). The narratives revealed that the contexts for discovering difference were their homes and schools, their immediate living contexts. Parents, teachers and peers drew attention to stutter- ing as being different to normal and as a disorder by reacting to it in a negative way. The incidents ranged from casual correct- ing to mocking and had variable impacts on participants who then began to create initial understandings of themselves | as different. Although these critical incidents were varied in nature across participants, they remained robust and were imprinted in participants' memories. As a consequence, they had a pervasive influence on participants' discoveries of themselves as different and began to shape their self-identity as DisOther. The social processes and interpretations of stuttering were not consistent between and within stories. For example, Siyanda's and Thabo's experiences of stuttering at home were different to that of school. In Kumari's story the trend was reversed. These experiences highlighted that stuttering was not interpreted and acted on uniformly across contexts and that there were multiple interpretations of stuttering within a single life experience. However, it was also apparent that despite the varying and competing interpretations'of stuttering, participants eventually gained an understanding of themselves as different by their adolescent years. The negative interpretations were Die Suid-Afrikaanse Tydskrif vir Kommunikasieafwykings, Vol. 51, 2004 R ep ro du ce d by S ab in et G at ew ay u nd er li ce nc e gr an te d by th e P ub lis he r (d at ed 2 01 2) Genesis of Self-Identity as DisOther: Life Histories of People who Stutter 9 conveyed to them through a variety of social responses which suggested that it was wrong to stutter - that they had broken rules - that they were different. There was variation in the ages at which participants discovered themselves as different (Table 2). While five participants in this study began to understand themselves as different at an early age, 3 to 8 years of age during the primary school years, two (Hennie and Nontokozo) were aware of their speech being different but did not attach strong meaning to themselves as different until adolescence. This trend suggested uneveness in their biographical circumstances and that varied contexts and processes contributed to initial shaping of their self-identity as DisOther. Importantly, the onset of their stutter- ing i.e. the presence of impairment and the development of a self-identity as DisOther did not coincide. Stuttering in itself was therefore not sufficient to begin to construct themselves as different. The impairment/disorder must receive a (negative) social interpretation to shape one's self-identity as DisOther. Fertile ground for discovering difference: Complex realities and vulnerable selves The stories also revealed that for some participants (Gareth, Sagren, Kumari, Nontokozo) the circumstances for discovering difference were complex. Within these realities, participants were potentially vulnerable and "powerless" to varying degrees. Kumari in particular, attributed her silence and subsequent stutter directly to her sense of vulnerability and fearfulness as a child in an abusive environment. She explained stuttering as a symptomatic manifestation of fear of her abusive father. Similarly, Gareth had a heightened sense of being vulnerable and "at-risk". A similar set of circumstances emerged in Sagren's story. Siyanda, Thabo and Nonthokozo were relatively powerless in difficult school contexts. Biographical suicide (Samuel, 1998) describes Nontokozo's context of feeling vulnerable. There was a devaluation and obliteration of her history as she was ̂ expected to take on the values of a powerful and dominant new system alien to her. In this context she felt vulnerable and "less than". These interplay of circumstances contributed to an exacerbation of stuttering through which she formed her self- identity as DisOther. | The participants' "fragility" amid these difficult home and school environments created fertile ground to develop a self- identity as DisOther. It is possible that another child, such as their siblings, with a different personal makeup, may not have been influenced in a similar way in the same situation. It is equally possible that the same child in another context might not have been as vulnerable. Hence, the combinations of their vulnerable "at risk" selves embedded in difficult social contexts contributed to their early understandings of being different. Reinforcing, strengthening and sedimenting self-identity At school... The threesome, the principal, the nurse and the school inspector. Society watchdogs! We knew what they were looking for, all the misfits, all the problems. Maybe they would forget about me. Then they start: Come to the front when we call your name and problem: McDonald and Hastings - Headlice, Smith - Can't See Well, Lovemore - Cripple, Blake - Stutterer. I just want to disappear into the ground. Is this all they know about me? Hey, remember I came second. They fill out the forms. I remain silent. Powerless. They make it unbearable. Everyone knows I am a stutterer but this is a painful public display. When you are young the last thing you want anyone to say is that you are different or you have a problem. Nothing came of that incident but I did eventually get to therapy. She tried to help but I hated it because it intruded on all the joys... my sport and all that stuff... I was just fed up with it... just relax, relax... it didn't do me any good. It just emphasised my difference and that I didn 't speak well. (Gareth) At high school I was still being teased. I could never say my name or answer a question without being stuck. There was the one time when we were all assembled at the beginning of the year so they could place us in new classes. The teacher calls the names of each child. She calls my name. Silence. I have a block At the end the numbers don't tally and the principal wants to know where the problem is. The teacher whispers to him that I stutter. He announces loudly that she must ask me questions everyday so I get used to speaking. I am sure he was trying to help but I felt really embarrassed and it made the situation worse forme. (Sagren) The teachers at school noticed my speech. Everyone knew the problem. They didn't say anything. They left me to finish what I was saying. It got bad so they arranged a speech therapist for me. I went to therapy at the Convent attached to the school. I was happy to go. She taught me to prolong the first word to make my speech fluent. The girls in class would laugh at me so I stopped doing it. They thought this new speech was funny. I stopped going to therapy after a few months. (Nonthokozo) Workplace... They are hard-nosed business executives. They are the all- knowing, economically-driven, powerful, white and rich men. I am going to help get them richer. If you area rep, people don't specifically buy your product but they buy you. It's all about the packaging and presentation. How do I then sell my product. My product is me. I have to sell Me in this business I want to own. I'm not really marketable because of the stutter and that's the problem. They will never take someone who stutters seriously. As soon as I stutter they will think I don't know my stuff (Hennie) Media... The interviewer wasn't knowledgeable and she didn't listen. Sagren and I answered the questions. She interpreted the answers and produced a ghastly newspaper article. It conveyed the picture that we were sort of imbecilic and groped for words and had veins sticking out of our necks. Of course our veins stick up! But she just conveyed us as poor, poor people with a problem. I read it and didn't like it. Although it was redone it still conveyed us as a breed of poor fellows. It was her story and she heard very little of ours. Since then I decided I won't talk to the media. (Gareth) Ongoing Social Inscriptions of difference: School, media and professional: authorising difference The contexts in which participants continued to strengthen their self-identities as DisOther over time included the home, school and work contexts. These repeated incidents provided The South African Journal of Communication Disorders, Vol. 51, 2004 R ep ro du ce d by S ab in et G at ew ay u nd er li ce nc e gr an te d by th e P ub lis he r (d at ed 2 01 2) 10 Harsha Kathard, Mershen Pillay, Michael Samuel and Vijay Reddy impetus for strengthening their Otherness. The media was implicated because it publicly portrayed negative images of PWS and stuttering. The school as context was significant because participants spent, a minimum of twelve years at school. Here their self-identity as DisOther was reinforced by negative experiences which included: identifying and authorising one as different; judging, evaluating, punishing and teasing within the school community; negative evaluations by teachers and "low marks" for oral work; referrals for treatment by school authorities. The school as community, as an ann of society, repeatedly inscribed stuttering as a problem over time. Within a Foucauldian (1977) interpretation, the school, among its other functions, also performed the task of surveillance via processes of scanning and detecting - it identified problems like stuttering. In cataloguing difference, it drew attention to a "pathology/abnormality" as part of a broader social function. As a symbol of authority in society, the school had named and authorised the problem. While it may be argued that these processes served in the interests of helping children, the stories also revealed how they simultaneously foregrounded problems and difference by formalising and authorising difference thereby generating heightened awareness of norm deviations. In this regard, schools transmitted and sustained a dominant social discourse of stuttering as a problem. In Nontokozo, Gareth and Hennie's stories, schools collaborated with health professionals e.g. nurses, speech therapists to treat stuttering. Whilst professional intervention was a means of helping the pupil, it also served to cast stutter- ing formally into the realm of a disorder and reinforced DisOtherness through various professional processes. Thabo aptly stated, "it is where they will ask: What is wrong with you?" Participants had a problem (stuttering) for which there was an official and formal mechanism for treatment. Profes- sional interventions are social processes (Pillay, 2003), knowledge of which filtered into schools, homes and commu- nities and had potential to reinforce DisOtherness. These processes occurred repeatedly over time in contexts of daily living. Prominent in all their stories were their negative experiences at school. Critical transitions: Colonising oneself Experiencing the moment of stuttering. The funniest thing is you will never know until it's upon you. Then you know. Oh! My God. There's a block. I didn't know the block was coming. BUMP and you fall and the block happens. It's a devil of a job to get going again. (Gareth) Then it happens. Out of the Blue It takes me by surprise because you don't know exactly when it will pop... You 're not in control of your mouth and that is really annoying me. (Hennie) I try to control the stutter but I can't. I try to control the stutter but I can't. Takes so long... I ///////////// erer kn... knerer ererererererer erer that I... since You don't understand what I said. I can see by the questioning confused look on you face that you don't understand. Here I go again. I can't look at your face. It is so embarrassing. Yes. I know what I want to say. I break the contact. You wait. Try to guess in your mind. You don't know what I want to say. I continue the struggle since I started it. More than a minute has passed. I stop. Try again. Finally, it's out. This is only part of what happens. The outside. Nothing comes out or too much all at once but you still don't know what I am saying. What goes on inside me is worse. Very very bad. The block disability because it takes so long for a word to come out. It happens again and again. (Thabo) Participants' experiences of the moment of stuttering varied over time. Their experiences could be summarised as uncer- tainty and loss of control, extended and repeated moments of struggle and a feeling that communication was in jeopardy. A constellation of negative emotions accompanied the event. Similar reports of suffering have been documented by Corcoran and Stewart (1998) and Sue-O'Brien (1993). As this bodily/ impairment experience of stuttering unfolded in a judgemental social world, the experience of "Self-out-of-control" emerged and formed the personal layer of experience that contributed to the shaping of their self-identity as DisOther. Self-judging Stuttering is standing between me and my dream of becoming a top-class business consultant. I am at the stage where I am really, really FED UP. I am at a stage, where I say, if my speech doesn't improve dramatically, then my life is a misery. It comes from the pressure I place on myself when I fail. I just think Gee! I sound dof. Really DOF. I don't even like the sound of my voice when I am fluent. (Hennie) When I reached my final year at school, the speech flow was better, but the rest of me, inside, was still an empty hollow. I was detached, isolated and lonely. I had friends, but no best friends because Rangini went to another school. My self-esteem was low. Rockbottom. I was fashioned out of fear. Iam nothing. (Kumari) The humiliation is what you suffer because you look stupid. I feel a halfwit. Then, you have to pick up the pieces. The whole thing is just so embarrassing. I am not so sure always what people think but I don't want to embarrass them either. (Gareth) While social processes were constantly operational, they became influential as participants engaged in personal interpretations of external values and judgements. The personal processes shaping self-identity as DisOther were therefore critical in the self-identity formation process. There was pro- gression from discovering oneself as different because one stutters to judging oneself as problematically different. The critical transition from "I have a stutter" to "I am a stutterer" and "I am less than" unfolded variably for participants and via different contextual realities reinforcing unevenness between participant experiences. For few participants (Thabo and Kumari) initial insults and incidents had instantaneous effect and resulted in immediate self-judging and a critical transition to understanding oneself as DisOther. For most participants this process was more gradual and reinforced by repeated incidents over time. Eventually all participants "colonised" themselves, as the dominant and (silent) discourses in school and at home were gradually appropriated into their value systems. Hence, all participants discriminated and devalued themselves by borrowing and internalising the oppressive social discourse. Temporal burdening The genesis of self-identity as DisOther occurred over time for all participants. Although single incidents remained impor- Die Suid-Afrikaanse Tydskrif vir Kommunikasieafwykings, Vol. 51, 2004 R ep ro du ce d by S ab in et G at ew ay u nd er li ce nc e gr an te d by th e P ub lis he r (d at ed 2 01 2) Genesis of Self-Identity as DisOther: Life Histories of People who Stutter 11 tant in shaping the self-identity formation, temporal burdening was crucial in reinforcing and sedimenting self-identity as DisOther. Kumari's feeling of being a vulnerable child in the presence of an adult male is a good example of the cumulative nature of self-identity formation "I am a little girl in the presence of my boss, a man. I carry the past with me". Similarly, Thabo's feeling of discomfort in the university classroom occurred as a consequence of an aggregation of past experiences. Sagren's story also illuminated the cumulative nature of self-construction as he suggested "take away my memories and much of this problem will be resolved." Self- identity as DisOther, therefore could be understood as a temporal memory of a burdened self, accumulating suffering over time. Multiplicities and intersections of self-identity formations I was always uncomfortable in male company... with male teachers, bosses, my father and father-in-law. I stutter the most in these situations. I was most uncomfortable with white males even if I didn't stutter. (Kumari) Primary School in Umlazi was harsh and we were caught in a vicious cycle with no words. You didn't do your work. Ten strokes. Come to school late. Twelve strokes. The punishment was too heavy. It was not just strict. It was unfair. The situation got bad. We were isolated, reserved and we were punished often. The trouble was not only because of the stutter. At home, we had a broken family. We go home and we see our parents fighting. My father used to beat my mother and we watch. Helpless. Speechless. This happened for about five years from Standard One and Standard Five. All this stuff put together had a negative impact. We are very silent and in pain. Eventually, we just drop out of school in standard five. We were about twelve years old. (Siyanda) I entered university and everything was strange. I war just too scared to talk with my stutter and because they were White lecturers. I had never met White people before. I only saw them on/TV. (Thabo) j x The participants' formation of self-identity as DisOther was not based neatly on theirj experience of stuttering but had also been shaped by their multiple positions in society. For example, issues of race, gender and age were indelibly interwoven suggesting that self-identity formations occurred at multiple intersections. The experience of stuttering therefore couldn't be understood solely,on the basis of impairment. Kumari's self-identity as Other included the collective influences of gender, age, race and stuttering. Thabo raised the issues of race and his sense of being Other as a Black person reared within an apartheid context in South Africa. Siyanda's early experiences of stuttering began with the classroom and playground incidents. However, he let life slip in and proceeded to share other life-changing experiences which combined to shape his experience of stuttering. He placed these "extraneous experiences" at the centre of his story of stuttering in childhood. His self-identity occurred at multiple intersections - as a vulnerable child at home in his "broken family", as poor, as a school dropout and as one who stutters. His "Otherness" therefore was not constructed solely on the basis of stuttering. His self-identity as DisOther was embedded within this complex reality and received meaning within it. Negotiating self-identity as DisOther We spoke only when answering questions and then we just sit down. We were shy guys. (Siyanda) I was so hurt. I decided not to speak in class so I don't reveal my weakness. I didn't say a word for two years in class. (Thabo) I get so angry when they tease. I have to show them who I am. BoomBoomBoom. I fight. That is only response we have to show that we are irritated. Angry! When we are so angry, we can't cough it up. In the classroom we are silent. (Siyanda) My stuttering became severe. I war just AFRAID. STUCK Stuck. AFRAID. The only good thing was my best friend Rangini. We were well-suited to each other because we were quiet and we silently blended into the background, remaining unnoticed. I was quiet especially in the class because I didn't want them to notice there war something wrong with me. (Kumari) On occasion I even try to speak louder than usual, almost shouting to keep fluent, but I feel quite stupid. I would do anything to be a bit fluent but these attempts always failed me. (Gareth) Pass as Normal There are two broad ways in which participants negotiated their self-identities as DisOther stuttering. Firstly, they chose strategies to "normalise" as a primary strategy by remaining silent, concealing the stutter by using a range of techniques and "blending in" to achieve compliance. Secondly, they were angered and "fight back". All strategies were context- dependent and fluid. Thabo and Siyanda chose to be silent in the classroom so that their problems would not be discovered. Thabo remained silent and compliant for two years to feign normality and this strategy served a self-protective function. On the playground, repeated teasing, a severe stutter and sense of disempowerment reinforced his silence and consequently threatened his potential social relationships. He felt lonely, isolated, rejected and disconnected which reinforced his self- identity as DisOther. Sagren, Kumari, Thabo and Siyanda followed similar patterns in the classroom to different degrees. They used strategies of blending in and compliance to reduce attention to their stuttering. For example, they were well-behaved in class and followed rules for games without protesting. When they spoke, they also chose to conceal their stutter using a variety of self-taught techniques or formally-learned strategies. These fluency-inducing strategies were used with varying degrees of success throughout their life paths. Gareth suggested that he had difficulty using slow and controlled speech which did not suit his personality but continued to use it because any bit of fluency was welcome. Sagren and Thabo also used a combi- nation of spontaneous and self-learned concealment strategies to cope with difficult moments. However these strategies frequently failed to conceal the stutter which increased their sense of disempowerment and reinforced their DisOthemess. The strategies of silence and concealing, blending and compliance can collectively be explained as strategies to "Pass as Normal" (Goffman, 1963; Petrunik & Shearing, 1983). Having realised their DisOthemess and the disruptive effects of stuttering, participants attempted to become "normal" as a The South African Journal of Communication Disorders, Vol. 51, 2004 R ep ro du ce d by S ab in et G at ew ay u nd er li ce nc e gr an te d by th e P ub lis he r (d at ed 2 01 2) 12 Harsha Kathard, Mershen Pillay, Michael Samuel and Vijay Reddy means of creating order at the communicative interface. Silence was often the first and preferred strategy as it served to reduce the disruption and also became a self-protective function - preventing one from being discovered as different or abnormal. Other strategies entailed concealing the stutter and attempting to establish fluent speech. Concealing is linked to "ordering" as in situations of Dis-Order, of disruptive communication, participants conceal stuttering to establish interactional order (Petrunik & Shearing, 1983). One way of achieving this order was to feign fluency or by using any strategy that created order and hence Pass as Normal. Disavowal That's one of the strange things, Both my mother and father shouldn't like to talk about these topics... a sticky topic to talk about. The teachers did the same thing. They wanted to avoid the situation. I think it was also because they didn 't want to take time to listen to me. It was better for them to pretend, to say nothing. (Sagren) The actions of parents and significant others also shaped how participants negotiated stuttering. Parents and significant others were often in conflicting states between accepting them for who they are as PWS and yet wanting to make them "right" or normal for society. The first set of strategies involved correcting the stutter via "lay" or professional strategies. A second set of strategies was disavowal, which occurred at school and/or at home. There was a "silent" acknowledgement of the problems associated with stuttering but these were not openly discussed. Participants explained this as a cultural phenomenon in South Africa during a historical period when it was uncommon for parents or teachers to talk to children about their (the children's) problems. They contrasted disavowal with the more recent and current situation in South Africa (2000 to 2004), where the emphasis had shifted to disclosing and talking openly about problems. The value of disavowal was interpreted differently by participants in different contexts i.e. it was both useful and not useful. Sagren and Kumari suggested that the lack of direct support at home fostered a greater sense of vulnerability and disempowerment, contributing to their DisOtherness. In the school environment, some teachers also used a strategy of disavowal that participants responded to differently. Sagren, for example, suggested that teachers excluded him from having to deliver oral speeches that would have been difficult (for him and them) to manage. He also suspected that disavowal might have been used as a strategy by those teachers who did not want to take the time to listen to him which served to isolate him and reinforce his self-identity as DisOther. For others (Kumari, Gareth, Hennie and Thabo), disavowal drew attention away from the problem, allowing everyday routines to continue. Society's penalties for stuttering, evident here as a cloak of silence, can be harsh and intolerant (Ross & Deverell, 2004) and contributed to reinforcing a self-identity as DisOther. IMPLICATIONS, RECOMMENDATIONS AND LIMITATIONS This study has illustrated the potential of life history research to generate knowledge of a personal nature. The consequence of introducing self-identity into the research dia- logue is that it breathes life and people into research thereby admitting subjectivity as a cornerstone of knowledge produc- tion. Life history methodology extends personal focus by highlighting the importance of understanding temporal and social dimensions of experience therefore contributing to understanding the "wholeness" of experience. The individual stories illuminate the variation and fluidity in the formation of self-identities and offers alternative inter- pretation to linear, stage model theories of stuttering develop- ment that have long been challenged by Van Riper. He contested the inadequacy of sectioning and categorising data and suggested "when adequate longitudinal data are available the concept of phases or stages will be completely discarded. Human beings have ways of slipping through meshes of all categories. We are tired of wielding empty nets" (Van Riper, 1982, p. 92). Biographical research aspires to address this concern and it is recommended that research of this nature be expanded. This study has produced knowledge of personal dimen- sions and therefore may have relevance and application for clinicians in many settings as they deal with the complex and multiple realities of their clients' lives. It is recommended that clinicians extend their roles beyond that of technicians (Ross & Deverell, 2004) and connect with the richly woven fabric of self-identity, social realities, value systems, emotions, family circumstances, personal choices and events in their clients' lives. To this end, engagement with the complex lives of PWS are emphasised in narrative-based interventions (DiLollo, Niemeyer & Manning, 2002). Moreover, this study revealed that despite the multiple biographical contexts and experiences of participants, the genesis of the self-identity as DisOther was robust for all participants. Society's role in creating disability must receive critical consideration. Societies which value "order" (Marotta, 2002) and "normality" contribute to shaping how PWS are con- structed and responded to as Other. Disability activists Barnes, Mercer and Shakespeare (1999) have therefore insisted that impairment in itself does not produce disability. Society contri- butes to producing disability by constructing and texturising issues of impairment within a discourse of negativity. Therefore, interventions at a societal level are recommended. Snyder (2000) has argued that unless societies are more accommodating and understanding of PWS, professional interventions will fail to make a significant difference in their lives. j As an important first step to addressing the social processes contributing to disability it is recommended that the professions' knowledge base is interrogated to uncover its' inherent prejudices and dominant stereotypical attitudes towards People Who Stutter. The theoretical base of the profession is grounded within in a deficit medical model (Pillay, 2003), and it has been established that speech patho- logists have negative stereotypes of PWS which are resistant to change (Snyder, 2001). Therefore, changing professional attitudes may be an important first step. Further to this the role of schools, media and general public in creating disability must also be addressed. The actions taken by participants have traditionally been understood as secondary aspects/behaviours of stuttering (Guitar, 1998). In this study actions emerged as identity management strategies. All people who stutter will live Die Suid-Afrikaanse Tydskrif vir Kommunikasieafwykings, Vol. 51, 2004 R ep ro du ce d by S ab in et G at ew ay u nd er li ce nc e gr an te d by th e P ub lis he r (d at ed 2 01 2) is of Self-Identity as DisOther: Life Histories of People who Stutter 13 differently by virtue of their historical, cultural, social and personal contexts and they act in varied ways in the interests of their identity management. Therefore, clinicians are encouraged to understand the actions of PWS in relation to their self-identities. The unfolding self-identity trajectories in some stories demonstrate that understanding difference may occur early in life. Although the dominant literature on the young child who stutters does not routinely address issues of emotions and attitudes (Guitar, 1998), the results of this study point to participants' vulnerability and the pervasive effects of traumatic early experiences. Interventions should be cognisant of early processes shaping self-identity formation and consider the appropriate nature of intervention with young children. In addition the issues of race, power and life circumstances must be foregrounded in understanding and intervening with complex lives. A significant limitation of the study was that the researcher was unable to interview additional participants due to time and human resource constraints. For example, it would have been useful to interview participants who had been reared in rural areas and who those who had no access to formal education. There were some PWS who met some criteria for selection but were unwilling to share their stories because they did not know or trust the researcher. In this regard, life history methodology is restrictive because it can only access understanding of those who are willing to share stories. A further limitation was that was that participants did not participate fully in the second level analytical process and therefore the analysis was generated primarily by the researcher. A comprehensive review of limitations of the study is available (Kathard, 2003). CONCLUSION This study explored the processes of the self-identity formation as DisOther and the actions of participants who stutter using a biographical, narrative life history methodology. The findings indicated that a complex set of personal and social processes operate in shaping self-identity as DisOther over time. The initial shaping of sejf-identity as DisOther began with participants' understanding themselves as different through a variety of critical events. Multiple social processes in their immediate home, school and work contexts reinforced their self-identities as DisOther. The personal, bodily experience of stuttering coupled with processes of self-judging, resulted in participants making a critical transition from discovering themselves as different to attaching meaning to themselves as "less than". The actions they took were context-dependent and served in the interests of their identity management. There was unevenness in how the trajectory of DisOther unfolded for each participant over time and the process was influenced by their biographical circumstances. The study makes a case for developing personal and experiential knowledge on stuttering. It has considered the implications, recommendations and limitations of the study. ACKNOWLEDGEMENTS The participants in the | study for sharing their stories so generously. The National Research Foundation, for supporting the Doctoral study (2001-2003) through the part-time Doctoral Scholarship Programme, Social Sciences. REFERENCES Angen, M. J. (2000). 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Die Suid-Afrikaanse Tydskrif vir Kommunikasieafwykings, Vol. 51, 2004 R ep ro du ce d by S ab in et G at ew ay u nd er li ce nc e gr an te d by th e P ub lis he r (d at ed 2 01 2) http://www.mnsu.edu/dept/comradis/isad4/ http://www.stuttering.advocate.net/paper.html real partner helps you reach l I r i l 9 5 3 , t w o y o u n g m e n w o r k e d t o g e t h e r t o c o n q u e r o n e o f m a n k i n d ' s final f r o n t i e r s - M t . E v e r e s t . It's t h e s o r t o f a c h i e v e m e n t t h a t c a n o n l y c o m e f r o m a g r e a t p a r t n e r s h i p . A t W i d e x w e a r e d e d i c a t e d t o b u i l d i n g r e l a t i o n s h i p s t h a t b r e a k n e w f r o n t i e r s in m a n a g i n g h e a r i n g loss. Since t h e l a u n c h o f t h e W i d e x C h a l l e n g e in 2 0 0 3 , w e h a v e s u p p o r t e d six audiologists in e x p l o r i n g u n c h a r t e r e d t e r r i t o r y t o shift local i g n o r a n c e a b o u t h e a r i n g loss. O u r p a r t n e r s h i p s w i t h a u d i o l o g i s t s r e v e a l e d : • N e w insights f r o m u r b a n i n f o r m a l s e t t l e m e n t s w i t h r e g a r d t o t h e a w a r e n e s s o f d e a l i n g w i t h h e a r i n g loss • T h e p o t e n t i a l r o l e o f r u r a l Kgotlas w i t h e d u c a t i n g local c o m m u n i t i e s a b o u t h e a r i n g loss • C u r r e n t a t t i t u d e s a n d b e h a v i o u r s w i t h i n c o r p o r a t e e n v i r o n m e n t s w i t h r e g a r d t o d e a l i n g w i t h h e a r i n g loss » R e l e v a n t g u i d e l i n e s t o assist p a r e n t s w h o h a v e c h i l d r e n w i t h h e a r i n g loss A l l t h e s e d i s c o v e r i e s a n d insights i n t o o u r local c o m m u n i t y w i l l in s o m e small w a y c o n t r i b u t e t o shifting t h e h u r d l e o f i g n o r a n c e a n d f e a r a b o u t h e a r i n g loss. B y w o r k i n g t o g e t h e r a n d s h a r i n g d i s c o v e r i e s w e c a n r e a c h n e w h e i g h t s a n d a c h i e v e m o r e in c o n q u e r i n g p u b l i c i g n o r a n c e a b o u t h e a r i n g loss. If y o u a r e i n t e r e s t e d in c o n q u e r i n g t h e c h a l l e n g e o f p u b l i c i g n o r a n c e a b o u t h e a r i n g loss w i t h s p e c i a l i s e d , social r e s e a r c h p r o j e c t s , p l e a s e c o n t a c t PK N a g i n o r B r e n d a n M c g u i r k at W i d e x . W e w i l l r e v i e w y o u r a p p l i c a t i o n w i t h o u r 2 0 0 5 i n t a k e o f a p p l i c a t i o n s . If y o u call us at ( 0 3 1 ) 5 6 3 4 4 2 5 w e w i l l also s h a r e o u r d i s c o v e r i e s o v e r t h e past t w o y e a r s w i t h y o u . V j J I D E X hear the difference R ep ro du ce d by S ab in et G at ew ay u nd er li ce nc e gr an te d by th e P ub lis he r (d at ed 2 01 2)