Id e n tity C o n stru c tio n F o llo w in g T ra u m a tic B rain Injury: A C a se S tu d y 17 IDENTITY CONSTRUCTION FOLLOWING TRAUMATIC BRAIN INJURY: A CASE STUDY A yesha S abat*, Legini M oodley#, H a rsh a K a th a r d M' ^ D ep artm en t o f S peech T h erap y & A u d io lo g y , U n iv ersity o f K w aZ u lu N atal, S o u th A frica ^D epartm ent o f S peech T h erap y & A u d io lo g y , U n iv ersity o f K w aZ u lu N atal, South A frica >t' D iv isio n o f C o m m u n ic atio n S cien ces and D isorders, U n iv ersity o f C ap e T ow n, S o u th A frica a b s t r a c t This co n stru ctio n o f s e l f id en tity p r e - a n d p o st-T ra u m a tic B ra in In ju ry (TBI) in a sin g le case s tu d y is described. A life h isto ry resea rch m e th o d o lo g y w as e m p lo y ed to ex p lo re the ex p erien c e o f a s u rv iv o r o f TBI, u sin g a sin g le case s tu d y design.. The p a rtic ip a n t w as a 31 y e a r o ld W hite S o u th A fric a n m a le who su sta in e d T B I w h ile on d u ty in the arm y. M u ltip le in terview s w ere c o n d u c te d w ith the p a r tic ip a n t to a llo w in -d ep th exp lo ra tio n o f his s e l f id en tity fo r m a tio n p r e - a n d p o st-T B I. D a ta a n a lysis en ta ile d tra n scrib in g the interview s, c ra ftin g a resea rch s to r y (n a rra tive an a lysis) a n d an a n a lysis o f th e narrative. The re su lts illu m in a ted the em e rg en c e a n d d ev elo p m e n t o f a re sis­ tance id e n tity as a p r o d u c t o f ea rly p r e -T B I experience, the loss o f s e lffo llo w in g T B I as w ell as the em erg en ce o f a p o s itiv e self-identity. The e m b e d d ed issu es o f co m m u n ic a tio n a n d se lf-id en tity are explained. The p a r tic ip a n t’s n a rra tive esp o u sed a h o p efu l optim ism , stro n g ly ch a llen g in g the d o m in a n t d isa b ility discourse. The sp e cific stj-engths a n d lim itations, a n d p o te n tia l va lu e o f u sin g life h isto ries as b oth a m e th o d o lo g ic a l a n d clin ic a l to o l w hen w o rkin g w ith T B I su rv ivo rs is described. Im p lica tio n s f o r resea rch a n d clin ic a l p ra c tic e in the f i e l d o f Sp eech a n d L a n g u a g e T herapy (SLT) is also p ro vid ed . Key w ords: T rau m atic brain injury, n arrativ e life h isto ry m eth o d o lo g y , self-id en tity , life ex p erien ce, resistan c e identity, loss o f self, co m ­ m u n ic atio n im pairm ent. IN T R O D U C T IO N T rau m atic b rain in ju ry (TB I) exerts a p ro fo u n d im p act on an in d iv id u a l’s life. T h e effects are p erv asiv e and d evastating. A co m p lex range o f co m m u n ic atio n d ifficu lties, in clu d in g specific d istu rb an ces su ch as ap h asia and d y sarth ria, are p ro d u ce d (H ilari & B yng, 2001). In ad d itio n , TB I also results in co g n itiv e, p h y s i­ cal, em o tio n al, b eh av io u ral, an d p sy ch o so cial se q u ela e (H artley, 1995). U ltim ately , the p erso n w ho su rv iv es a T B I has to n eg o tiate a series o f life-alterin g exp erien ces. T his p ap e r draw s on th e life ex p erien ce o f a T B I su rv iv o r to ex p lo re the d ev e lo p m e n t o f self- id e n tity p re- and post-T B I. T h ere is a b u rg eo n in g in terest in ex p lo rin g ch an g es in id e n ­ tity fo llo w in g illness in the d iscip lin es o f p sy ch o lo g y , so cio lo g y and m ed ical an th ro p o lo g y (Frank, 1995). W ith in the n arrativ e re­ search trad itio n , the su b jectiv e ex p erien ce o f T B I (N o c h i, 2000; 1998) has b een explored. S p eech -]an g u ag e th e ra p y (S L T ) p ro fe s ­ sio n als have also w itn essed a tran sitio n in research o rien tatio n to w ard s the u se o f q u alita tiv e research m ethods for ex p lo rin g the co n seq u e n ces o f c o m m u n ic atio n d iso rd ers, su ch as ap h asia (Pound, Parr, L in d sa y & W o olf, 2000; D am ico, O elsch laeg er, & S im m o n s-M ack ie, 1999; and Parr, B yng, G ilpin, & Ireland, 1997). T h e cu rren t stu d y is p rem ised on the n o tio n th at k n o w led g e o f se lf-id e n tity inform s clin ical p ractice. It is stro n g ly alig n ed w ith the p o sitio n taken by H ag stro m an d W ertsch (2004), w ho assert th at clin ician s need to u n d ersta n d w ho the p erso n is in o rd er to h elp h im /h er w ith co m m u n icatio n . S ervices w o u ld b e m ore re le ­ v an t i f clin ician s had th e k n o w led g e to u n d erstan d th e in d iv id u al in th e co n tex t o f h is/h er life circu m stan ces. S elf-id en tity fo rm a tio n is a co m p lex p ro ce ss sh a p ed b y p erso n al, so cial and tem p o ral factors (Sarbin, 2000). T w o su b sy s­ tem s u n d erlie self-id en tity , n am ely p erso n a l id en tity and social identity. P erso n al id en tity refers to th e u n iq u e co n stitu tio n and b io g rap h y o f the ind iv id u al, su ch as p referen c es and p erso n a lity traits, w h ereas social id en tity refers to d escrip tio n s o f self, b ased on m em b ersh ip and id e n tifica tio n w ith a certain so cial group (de la R e y , 1991). Id en tity is a th e o ry o f s e lf th a t is d ev elo p ed and su stain ed th ro u g h a p ro cess o f inner co n c u rre n ce ab o u t w h at th e s e lf is like (S ch len k er, 1987). T he cre atio n o f se lf-k n o w le d g e relies on sev eral co m p o ­ n en ts viz. p erso n a l m em o ry o f th e p ast, co n c ep tu alisin g societal roles and in teractio n w ith th e e n v iro n m en t (N eisser, 1988). A TB I su rv iv o r’s m e m o ry o f p re-m o rb id ex p e rien c e shapes h is/h er self- identity, w h ich often has u n d erg o n e a critical ch an g e fo llo w in g the h ead injury. F o llo w in g a m ark ed life-alterin g event, n ew m e an ­ ings are assig n ed to th e in d iv id u a l’s so cial in teractio n s, thus re ­ sh ap in g h is/h er id en tity d ev elo p m en t. N e is s e r’s (1988) co n c ep t o f the ex ten d ed s e lf has im p licatio n s for a co n tin u in g life h isto ry in that in d iv id u als relate th e ir p ast s e lf d uring th e co n stru c tio n o f th eir p re se n t and fu tu re n o tio n s o f th e ir self-identity. A s th e m e an ­ in g an d statu s o f a life ev en t ch an g es for an in d iv id u al o v er tim e, so does h is/h er d efin itio n o f th e self, sin c e a p erso n a l sense o f s e lf co n tain s p ast and p rese n t ex p erien ces and ex p ectatio n s for the fu tu re (B ru m fitt, 1998). T hus, as self-id en tity is co n tin u o u sly c o n ­ stru cted an d reco n stru cted , S L T s n eed to be se n sitiv e to this p ro c ­ ess b y u n d ersta n d in g th e in d iv id u al as a d y n am ic so cial being (H ag stro m & W ertsch , 2004). T h e ex p e rien c e o f co m m u n ic atio n im p a irm en t is em b ed d ed w ith in th e p ro ce ss o f se lf-id e n tity fo rm atio n . T he irony lies in the p ro b lem itself, in th a t co m m u n icatio n , w hich is req u ired as a form o f ex p re ssio n o f self-id en tity , is co m p ro m ised (B ru m fitt, 1998). A n in d iv id u al w ho has su stain ed T B I has to n eg o tiate n ew w ays o f co m m u n ic atin g and en g ag in g in v ario u s so cial activ ities, and re ­ n eg o tiate co m p lex ch allen g es w ith red u c ed flu id ity and flex ib ility (S h ad d en & A gan, 2004). T h ey are ju d g e d b y th o se w ith w h o m th ey en g ag e so cially as eith er co m p ete n t o r n o t b y v irtu e o f the su ccess o f th e ir co m m u n ic ativ e in teractio n s. T h eir self- id en tity rests critica lly on how w ell th ey are ab le to n eg o tiate these in te rac­ tions, as th e ir p ro jec ted id en tities are su b je ct to so cial evaluation. C o m m u n ic atio n is cen tral in sh ap in g se lf-id e n tity fo rm a tio n as the in d iv id u al w ith T B I co n ten d s w ith an altered self, as ch aracterised b y n ew w ay s o f th in k in g , u n d ersta n d in g , ex p ressin g an d sense m aking. The South African Journal o f Communication Disorders, Vol. S3, 2006 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. ) 18 Ayesha Sabat, Legini Moodley and Harsha Kathard W hat challenges m ay SLTs face when w orking with TBI survivors via a self-identity lens? Issues o f identity construction post-TB I m ay seem daunting, since identity constructs have typi­ cally not been w ithin the traditional know ledge base o f SLTs. Self-identity is the traditional domain o f psychology in clinical disciplines and the inclusion o f self-identity in the SLT discourse creates the challenge o f negotiating boundary crossing across dis­ ciplines. Furtherm ore, SLTs m ay be reluctant to take on m ore than they should due to large caseloads and lim ited healthcare funding (Shadden & Agan, 2004). Finally, identity loss and reconstruction in the aftermath o f TBI is an elusive concept and m ay be difficult to target as a tangible therapeutic goal. However, given the inex­ tricable link betw een com m unication and self-identity it is neces­ sary to intervene w ithin a fram ew ork that places the w hole indi­ vidual at centre stage. The notion that a sense o f s e lf is m aintained in even the most im paired com m unicator (Brumfitt, 1998) sup­ ports the need to understand the preserved se lf o f an individual with acquired com m unication impairment Therapeutic intervention m ay be enhanced b y understand­ ing the relationship betw een therapeutic outcom e and self- understanding. Pound (1993) explored the attitudes o f aphasic speakers and their therapists to aphasia and found that SLTs who were interviewed focused alm ost exclusively on what they deem ed the devastating consequences o f im paired com m unication follow­ ing stroke. On the other hand, people with aphasia reported both the negative and positive aspects o f their altered lives and equated the importance o f com m unication in their lives with other m ajor life issues, such as driving, em ploym ent and the ability to execute activities o f daily living. Therefore, i f clinicians are to provide a service that is person-centred, it is critical to acknowledge that it is not sufficient to focus exclusively on the individual’s com m uni­ cation im pairm ent but to gain a deeper understanding o f other per­ tinent life issues that feature robustly in his/her reality. Clinicians therefore should attem pt to understand who the person is in order to effectively m anage the consequences o f com m unication diffi­ culties. Traditionally, research on the psychosocial issues pertain­ ing to TBI has been am assed within quantitative research fram e­ works. As a consequence o f the m ethodological choices, the un ­ derstanding o f TBI has been relayed from an etic (or outsider) professional perspective. M any o f these studies have utilised quantitative positivist research designs to explore com plex con­ cepts such as the chronic physical, emotional, and social changes post-TBI; quality o f life following TBI; functional perform ance after TBI; and rehabilitation outcom e follow ing TBI (Corrigan, Bogner, M ysiw, Clinchot & Fugate, 2001). The process o f know l­ edge production in the field is therefore likely to benefit from an epistem ological shift w hich creates understanding o f the personal experiences o f people who live in the afterm ath o f TBI. The inclusion o f the experiential dom ain m ay assist in cre­ ating knowledge to support the current paradigm shift in the reha­ bilitation field from the medical m odel tow ard the social model o f disability, w hich em phasises the interaction o f disease and disabil­ ity w ithin the larger am bit o f society (Jordan & Bryan, 2001). W hile the medical m odel has centralised the focus on impairment, the social model requires a deeper understanding o f disability w ithin a social context o f disabling barriers. Social barriers must be rem oved as an essential prerequisite for em powering people with disability (Pound et al., 2000). The significance o f generating an integrated understanding o f disability has lead to the blurring o f boundaries betw een SLT, sociology and disability theory (Pound et al., 2000). In light o f the foregoing discussion, a life history research m ethodology was utilized in this study to explore self-identity formation. The personal biography highlights the issues most im­ portant to the individual in his or her context (Atkinson, 1998). The life history narrative allow s participants to engage in a proc­ ess o f self-reflection, thus enabling them to explore and construct self-narratives about them selves located within a broader social, political, and historical milieu, thus generating broader contextual m eaning from the individual’s experience (Cole & Knowles, 2001). Life history research allows the opportunity for the indi­ vidual to ably foreground the se lf in relation to im pairm ent over time (Kathard, 2003). Life history research offers a heightened sensitivity to the com plexity o f TBI by adding a hum an dim ension to the experi­ ence o f TBI and is particularly valuable in understanding the changing dynamics o f individuals who experience fluctuating perform ance as they recover (Hartley, 1995). The story o f a TBI survivor purveys not only what the disability m eans to the indi­ vidual along a temporal continuum , but also conveys the rich per­ sonal m eaning that s/he has attached to it. Critically, life history m ethodology has the potential to generate know ledge which SLTs can apply to their practice especially when w orking in a culturally and linguistically diverse context, such as South Africa. This study responds to the follow ing question: What is the nature and the p rocess o f self-identity construction in an individ­ u al who has sustained traumatic brain injury? M ETH O D O LO G Y A im s o f the study 1. To explore the nature and process o f self-identity construction pre- and post-TBI 2. To consider the im plications o f the findings for research and clinical practice in the field o f SLT Research design A qualitative, life history research m ethodology was util­ ized (Cole & Knowles, 2001) to explore the p articipant’s self- identity form ation using a single subject case study design. Life history research values depth over breadth, thus the aim is not population representativeness (Cole & Knowles, 2001). Single­ subject m ethodologies are w idely accepted and relevant as a le­ gitim ate technique for exploring the depth o f experience o f apha­ sia and dysfluency (Kearns, 1999) and therefore also have appli­ cability for TBI. Im portantly, single case study designs used in qualitative research can contribute to practice, theory, social is­ sues and action and thus hold value in facilitating a deeper under­ standing o f the com plex process o f self-identity construction post TBI. P articipant selection criteria Purposeful sam pling was im plem ented to select an infor­ m ation-rich case for in-depth study. This strategy is useful when the purpose is to gain a deep understanding o f the particular case, in the absence o f any desire to generalise the findings to all cases (M cM illan & Schumacher, 2000). The participant was s e l e c t e d on the basis o f his experience and understanding o f TBI in his lifeworld. The participant was required to: • Be an adult who w ould have sustained a closed head injury at least two years prior to the interview and needed to have lived with TBI in order to relate pre- and post-TBI experience Die Suid-Afrikaanse Tydskrif vir Kommunikasieafwykings, Vol. 53, 2006 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. ) Identity Construction Following Traumatic Brain Injury: A Case Study 19 . Have adequate cognitive ability that would enable him /her to provide a narrative account o f his/her experience o f TBI via a series o f in depth interviews (Nochi, 1998) . Have an inform ation-rich story to share (Nochi, 1998) < Have a degree o f self-aw areness and insight into the fact that s/he had sustained TBI in order to provide useful inform ation for theory-building (Nochi, 1998) • V oluntarily participate in the study because life history m eth­ odology necessitates a personal sharing o f life experience and sustained engagem ent with the research process (Cole & Knowles, 2001) • Be able to share his/her experience in English so that re­ searcher and participant could com m unicate in a com m on language for the purposes o f facilitating an in-depth explora­ tion o f his/her life experience • Be able to share his/her story with adequate verbal com pe­ tency or via alternative or augm entative com m unication if considered appropriate M ethod o f data collection M ultiple in-depth interviews were conducted to enable the researcher to obtain m eaningful insights that reflected how the individual made sense o f the event o f TBI in his/her life. The content o f the interviews was shaped by focussing on topics o f interest or significance to the participant (Clandinin & Con­ nelly, 2000). See A ppendix A for the interview schedule used I during data collection. The interview schedule was developed | using A tkinson’s (1998) guidelines. The interviews were video- and audio recorded, thus ena­ bling the researcher to observe the kinesics and non-verbal com- | m unication o f the participant, lending greater depth to the infor­ m ation shared. Audio tape-recording o f the interview sessions i allow ed both the researcher and the participant to cross-check the data gathered, thus enabling a means o f validating the data. The interviews were supplem ented by sources o f inform ation from the participant’s personal journal, photograph album s and m edicalrecords. / R esearch procedure The procedure com prised three main phases, namely, a screening phase, a pilot phase, and main study (Table 1). All phases were im plem ented at ja rehabilitation institution in i KwaZulu Natal, South A frica for individuals who have sustained strokes and head injuries. Three participants were interviewed during the screening phase. Two participants m et the criteria for selection as they had inform ation-rich stories. One participant was chosen for the pilot and the other as the main case study. D uring the pilot phase, the interview schedule, interview proc­ ess, logistics o f data collection and analysis procedures were refined. In the m ain study the participant was interview ed on three occasions. Each interview was approxim ately ninety minutes. The interview s were audio and video recorded. The participant narrated his life story to the researcher. It was critical to establish a com fortable rapport with the participant, in light o f the sensi­ tive and intensely personal nature o f the interviews. Exposure o f o n eself during the research process involves issues o f respect, trust, fairness, truth telling and justice (Cole & Knowles, 2001; C landinin & Connelly, 2000). A sem i-structured interview ap­ proach was adopted, thus prom oting flexibility during the inter­ view process (Atkinson, 1998). The participant was able to move backw ard and forward along a temporal dim ension as part o f the storytelling process (Clandinin & Connelly, 2000). Description o f the participant The participant selected was a 31 year-old white South African male, Paul Carstens (name changed to protect identity), w ho sustained TBI on N ovem ber 4, 1991 while on duty in the South African army. He was 18 years old at the time when he was involved in an explosion causing him to sustain a head in­ ju ry and killing his friend who was assisting him. Paul was in a com a for six m onths follow ing the accident, having sustained severe brain injury. Prior to the accident, Paul had ju st com pleted secondary school and embarked on m ilitary service. He described him self pre-m orbidly as a relaxed, fun-loving, unconventional individual who possessed good com m unication and interpersonal skills. At the time o f the interviews, which were conducted in September 2003, at least 12 years post injury, Paul was receiving psycho­ therapy and speech-language therapy to address cognitive and com m unication difficulties. In terms o f cognitive abilities, Paul was experiencing subtle m em ory, attention, concentration and organisational difficulties. He also presented with m oderate dys­ arthria, thus his speech intelligibility was com prom ised. Other conditions included arthritis; restricted m obility (he was using crutches); im paired vision in his left eye due to optical nerve damage; and perm anent dental m isalignm ent caused by injury to his mandible. T able 1: Outline o f research procedure PH ASE 1: SC R EEN IN G PHASE 2: PILO T STUDY PHASE 3: M A IN STUDY S Three participants were interviewed. Since they fulfilled the selection criteria em­ ployed, two were randomly selected for participation in the study. From these two participants, one was chosen for the pilot study and one for the main study. 1 S The participant was interviewed over one one- hour and one two-hour sessions. The interviews were audio_ and video recorded. The participant narrated his life story to the researcher. The following aspects were pilot tested: interview schedule, interview process, logistics and data analysis procedures. The participant was interviewed over three one-and-a-half -hour sessions. The interviews were audio- and video recorded. The participant narrated his life story to the researcher. The data collected were qualitatively analysed. The South African Journal o f Communication Disorders, Vol. 53, 2006 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. ) 20 Ayesha Sabat, Legini Moodley and Harsha Kathard Ethical considerations Qualitative researchers can be considered as guests in the private spaces o f the participants’ world (Stake, 1994). There­ fore, it was im perative to adhere to a strict code o f ethics. Ethical Clearance was obtained from the U niversity o f K w aZulu Natal Ethics Committee prior to the study. Inform ed consent was ob­ tained from the participant and ethical issues o f anonymity, con­ fidentiality, w ithdraw al and the role o f researcher and participant were highlighted. The participant was treated with fairness by prom oting open discussion and negotiation. He was also in­ form ed o f the intended (video and audio) recording o f the inter­ view sessions. W ritten inform ed consent to record the interviews was obtained from the participant at the outset. In order to ensure an authentic representation o f the participant’s story, he was pro­ vided with the storied (recorded) representation o f his narrative to enable him to validate the information shared (Stake, 1994). R igour and trustworthiness The researcher’s reflexive position during the research process is valued as a critical technique for establishing trustw or­ thiness (Cole & Knowles, 2001). In order to achieve this, num er­ ous strategies o f trustw orthiness were employed. Prolonged and persisten t fie ld w o rk involved the use o f m ultiple in-depth inter­ view s and ongoing contact with the participant over the course o f the process spanning two years. The interviews were conducted in the p a rtic ip a n t’s language to ensure that the situation was con­ ducive to storytelling. Verbatim accounts o f conversations in the form o f direct quotes were representative o f the participant’s m eaning o f his experience. Low inference descriptors refer to literal descriptions used and understood by the participant, as opposed to the abstract language used by the researcher. These add more depth to the data (M cM illan & Schumacher, 2000). Therefore, in portraying P au l’s account o f his life experience, accurate descriptions from the interviews were used to enhance trustworthiness o f the data. Furtherm ore, while in-depth interviews form ed the core data collection technique, triangulation or m ulti-m ethod strate­ gies o f data collection were also em ployed to increase validity (medical records, journals and photo albums). M ultim ethod strategies increase the credibility o f findings by yielding different insights around the central topic (M cM illan & Schumacher, 2000). M em ber checking was also employed. This entailed re­ turning the recorded version o f his story to the participant for validation and verification. M em ber checking is an important aspect o f life history m ethodology, as it indicates respect for the individual and enhances the truth-value or fidelity o f the narrative (Frank, 1997; A tkinson, 1998). M ethodological challenges The participant was able to narrate his story with consider­ able ease, despite the presence o f dysarthria and subtle cognitive difficulties. Organizational and m em ory problem s were m ildly evident during the narration. For example, at certain points in the narration, he reached a blank and was unable to continue with a certain thread o f thought and had to be prom pted. A t other times his narrative tended to be tangential and he thus needed to be re­ directed to the focus o f the question that was asked. Fortunately, m em ory blanks were rare as reliance on good m em ory is a criti­ cal aspect o f identity construction (Shadden & Agan, 2004; Neis- ser, 1988). Interviews were audio_ and video recorded to facilitate the transcription process. The participant and researcher negoti­ ated methods o f clarification, w hich included requesting repeti­ tion and/or elaboration o f a spoken word(s) if they were unclear to the researcher and speaking at an increased vocal intensity to increase the clarity o f his speech. The option o f com m unicating graphically or via the w ritten m ode in instances o f com m unica­ tion breakdown was also available. However, the participant did not find it necessary to use these alternatives. In life history re­ search, particularly when w orking with people experiencing com ­ m unication disorders, it is critical that the researcher is a skilled listener to allow the personal story to unfold meaningfully. D ata analysis The data analysis w as conducted at three levels. The first level o f analysis entailed generating transcripts from the inter­ views conducted. This was followed by narrative analysis (Polkinghom e, 1995), w hich produced the research story through m eaningful interaction w ith the interview data (transcripts). The third analytical level involved an analysis o f the narrative (Polkinghom e, 1995) in w hich the research story was examined for com m on themes and concepts in relation to the critical re­ search question. D uring this process the researcher steered clear o f im posing prior theoretically derived concepts on the data. Instead, careful inspection o f the narrative facilitated the genera­ tion and developm ent o f new concepts from the research data via an inductive analysis. The em erging them es were then discussed in relation to available literature. RESU LTS AND D ISC U SSIO N For the purposes o f this paper, the results are presented as ex­ cerpts from the research story, as well as verbatim excerpts from the transcripts. The results and discussion are integrated. The em erging themes listed below describe the evolution o f the par­ ticipant’s self-identity: 1. D eveloping a resistance identity as a product o f early pre-TBI experience 2. M oving from loss o f se lf to reconstruction o f se lf post-TBI 3. C onstructing a positive self-identity post-TB I i D eveloping a resistance identity as a product o f early pre-TBI experience 1 I In attempting to understand the process o f identity form a­ tion and the shifts in self-identity, it was critical to explore the role that early childhood experiences have played in shaping P a u l’s self-identity. His early life experiences reflected a child­ hood characterised by disappointm ent, sadness, confusion and a sense o f abandonment. Paul experienced resentm ent and deep pain at being separated from his parents at an early age when he was sent to boarding school: ‘We were sent up to Eshowe. I begged and p le a d e d f o r her (my mother) to take m e back. I think I was causing her more pa in than anything else. She drove all the w ay to Eshowe with us in the car, w hich made her happy. She drove back alone a n d she cried a ll the w ay hom e ... g o in g to school, leaving home ... that had to have been the saddest experi­ ence o f my childhood. ’ P a u l’s feelings o f loneliness and sadness were further intensified Die Suid-Afrikaanse Tydskrif vir Kommunikasieafwykings, Vol. 53, 2006 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. ) Identity Construction Following Traumatic Brain Injury: A Case Study 21 by the reality that his fam ily unit had been split by his p aren t’s divorce when he was four years old. This was clearly a traumatic experience for him, as reflected in the following excerpt: lM y p a ren ts were divorced when I was f o u r ye a rs old. I was too yo u n g to understand what was happening. I d id n 't even know it was happening. B u t soon enough, the reality o f It was etched into our lives. Forever. We w orked around it though. M y p arents made sure o f that. ’ Paul could not seek solace in his relationship with his older brother, as they were not close. A s a result, he needed to adopt a strategy that would enable him to survive at boarding school away from all that was fam iliar and safe. He depended on him ­ self. Paul developed a firm sense o f individuality that became central to his quest for survival at such a tender age, where paren­ tal love and support is so critical to o n e ’s feelings o f safety, secu­ rity and acceptance: Six ye a r-o ld boy wants his mommy. A lone in a strange place. B egged a n d pleaded, p lease take me back. I hated being aw ay fr o m mom. I f e l t hurt, rejected, abandoned. I cried. I waited. They d id n ’t com e back f o r me. This w as it. I had to be strong, smart, independent. F ig h t m y own battles. B e my own person. Chris, m y brother, a n d I w e r e n ’t close. I could- n ’t depend on him. We fo u g h t a ll the time. I built a p ro tec­ tive w all around me. I needed to f e e l safe, in control. I needed to be Me. ’ His experience at school was challenging and m ingled with a sense o f longing for his parents. Paul also had a dire need to prove his worth to a father who underm ined his ability: ‘L ife a t school w as f u l l o f challenges, especially when mum a n d d a d were so f a r a w a y...m y d a d a n d I ju s t never clicked... it was a strange relationship that we shared. I think my dad j u s t dem anded too much fro m me. I couldn ’t deliver and he used to g ive m e these lectures about not being go o d enough a t a n yth in g .' P au l’s initial reaction o f w ithdraw ing into a silent safe space within h im self to help him deal with the feelings o f abandonm ent he was experiencing, led to him developing a firm sense o f self- identity^ D efining o n e’s self-identity is critical to determ ining how one acts in a given environm ent and relates to others (Schlenker, 1987). Paul was determ ined to be different; to affirm his individuality: | 7 w as a rebel, especially in high school. The anti-trendy, anti-groupie. Chris, on the other hand was very much a groupie. I d id m y own thing} M ade my own rules. A n d broke them! That d id n ’t win me too m any frie n d s b ut I had two really g o o d fr ie n d s who understood me. I f w e d id anything we w ould do it three different ways. Each to his own. I d id n 't care f o r convention. I still d o n ’t. I broke all the rules! ’ P a u l’s need to adopt a strong persona and not to succum b to peer- pressure and group convention was his w ay o f negotiating this challenge. It was never im portant to him to fit in. His outspoken defiance o f social convention is reflected in his discourse and ultim ately linked to who he was. P au l’s strong sense o f inde­ pendence was further reflected in his assertion that he did not have m any heroes growing up. He cited h im self as his source o f inspiration, indicating a certain lack o f w onder and perhaps even trust in the adults in his lifeworld. Paul has attributed the person he has becom e to his own effort: ‘T h a t’s w here I developed a ll m y independence fr o m (boarding school) because I h a d to sta n d on m y own two fe e t ...I was never brought up by m y p a ren ts...w h a t I am now is basically self-created...1 was never around m y parents that m u ch ...m y inspiration to do anything had to come fr o m me. ’ P au l’s experience as W hite, English and m iddle-class unfolded within a broader socio-political context. H is experiences unrav­ elled in South A frica during a turbulent social and political p e ­ riod (1980 to 1991). D uring this tim e m ilitary service was still com pulsory for young W hite males under the previous apartheid regime. The im position o f m ilitary service was not always m et with enthusiasm especially since at the critical age o f 18 years, one is usually looking forw ard to travelling and furthering o n e ’s education. In this particular case, Paul indicated a strong dislike for the army: 7 hated the army like hell! ’ Ironically, his life-altering event occurred in this very context (the army). His sentim ents could be understood within the con­ text o f his tendency to challenge authority and live life by his rules. P aul’s narrative thus spoke resolutely o f his need to locate h im self in a w orld that he often encountered as unfriendly and cold. W hat Paul viewed as being different from the rest was later to becom e his w ay o f adapting to lifestyle changes as a person living with an acquired disability. His sense o f self-identity was thus valued as a means o f claim ing his place in a hostile world. It was w ithin this protective space that he retreated in order to feel safeguarded against sources o f pain and disappointm ent. Clearly, initial experiences had created a resistance identity; that is, nega­ tive experiences produced a sense o f resistance to convention and anything that underm ined his self-worth. This resistance was ultim ately em bedded pre-m orbidly in P aul’s sense o f identity . This was his w ay o f surviving. A lthough Paul retreated into a protective space, he devel­ oped skills that helped him survive in the face o f adversity. H is encounter o f life as a young person fashioned a resilience that was going to prepare him for a greater challenge later in life. In a sense, P au l’s resistance identity harboured strength o f spirit that led to the critical shift in the w ay he was to view his w orld and his place in it: with further intent to resist the restraints and inher­ ent expectations im posed by society on one who has a disability. P a u l’s process o f self-identity form ation is thus best understood w ithin the context o f his early life experiences. The emerging transition o f his self-identity was “norm al” and expected, how ­ ever it m ay not have taken the trajectory it did, had his life cir­ cum stances been different. M oving from loss o f self to reconstruction o f self following TBI P au l’s initial experience follow ing TBI was characterised by a sense o f loss - a loss o f m any functions, including his speech: ‘all m y m ovements in the mouth, like m oving my tongue fro m side to side were very slow there was absolutely nothing - com ing o u t ’ He experienced the frustration at not being able to project his voice: the stu p id nurses, they used to run a cold bath a n d p u t m e in. I c o u ld n ’t talk. I c o u ld n ’t say anything. I used to try and hit th e m !’ Paul endured a transition at this stage from having a strong and The South African Journal o f Communication Disorders, Vol. 53, 2006 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. ) 22 Ayesha Sabat, Legini Moodley and Harsha Kathard boisterous voice to support his personality and define his sense o f self, to momentarily losing that voice. A t a broader level, P a u l’s sense o f self experienced a shift which was defined by loss fol­ lowing the TBI. O ther losses included a certain degree o f loss o f mobility, partial loss o f independence and econom ic em pow er­ ment, loss o f form er friendships as friends were uncom fortable about P aul’s acquired disability and loss o f a certain public image that he always tried to project. Sense o f self is dram atically affected b y TBI and is experi­ enced by survivors o f TBI as a complex, m ulti-layered phenom e­ non (Nochi, 1998). Individuals with TBI often experience conflict in trying to reconcile the disparity created by the self-image they m aintain and society’s perception o f who they really are. The dom inant public narrative has the tendency to impose negative labels on people with TBI. This creates conflict w ithin the indi­ vidual, leading to a sense o f loss o f self. N ochi (1998) has identi­ fied this phenom enon as loss o f s e lf as perceived by others. L a­ bels generally im ply negative images o f disability and prom ote a deficit-based, pathologically oriented view o f people with dis­ abilities, thus discounting their individuality and casting them into pre-existing categories. This perspective o f people with dis­ abilities is espoused by the medical model, w hich perpetuates the notion that illness is a form o f social deviancy. P a u l’s resistance identity then gradually resurfaced as his recovery progressed and he began to challenge the public narrative. He regained his speech, his voice, which was a critical step in the transition. He spoke strongly o f his need to be acknow ledged as an individual with unique traits that preclude any form o f categorisation: 7 am priceless. I am unique. E verything about me marks who I am. M y thumbprints. M y voice. I am an individual. A n d no one can take that away fr o m m e.’ [em phasis mine] Paul thus once again asserted his identity forem ost as an individ­ ual who has never blindly followed convention. The fact that he was physically challenged did not feature resolutely in his self­ appraisal. He spoke o f his frustration due to the limitations in­ curred by his injuries, such as not being able to drive or su rf any­ more. Interestingly, he did not cite his rem aining com m unication difficulties as a constraint im posed by the head injury. Instead, he chose to value his voice and saw it as instrum ental in affirming his identity. P a u l’s com m unication difficulties and the utility o f speech-language therapy were raised by the researcher. However, he did not attribute m uch significance to these aspects, choosing to talk about other critical aspects which concerned him e.g. his lim ited mobility. W hilst his speech m ay have had a dysarthric quality, rendering it unclear at times, w hat m attered to Paul was that, ultimately, he was able to com m unicate his m essage. D e­ spite the consequences o f his impairm ent/s he did not view him ­ se lf entirely as defined by a disability. The w ay that society p e r­ ceived him however, was apparent to him and to this end, Paul experienced the effects o f this negative perception, w hich con­ flicted with his own understanding o f h im self and w hat he was capable o f achieving: ‘Life is n ’t always sm ooth sailing when yo u have a disability. People treat y o u differently. The trick is learning how to deal with prejudices. I t ’s n ot easy. Som etim es I g e t really angry like when I go to the till to p a y and m y fia n c e is with me and they ask her f o r the money. I t is as though I d o n ’t exist! Talk to the m an! ... I have a short fu s e ! I do try to be patien t sometimes. B u t I j u s t g e t so angry when p e o p le talk over me! I wish they w ould see me and treat me like they w ould any­ one else. I know that m y body has been injured b ut m y brain is still happening! ’ [emphasis his] Paul faced the challenges o f societal prejudice during his daily course o f events. It was perhaps because o f his perceived com­ m unication (dis)ability and m arked physical im pairm ents, such as his unsteady gait w hilst w alking which necessitated the use of assistive devices like crutches, and his injured eye, that the cash­ ier in the above exchange treated him as described. However, Paul used his voice once again to speak out against the prejudice. H e used his ability to com m unicate to his advantage. His experi­ ence o f disability and the subsequent restrictions it imposed on his m ovem ent was exacerbated by the discrim ination displayed towards him, em bodied in a form o f social prejudice that exists against people with disabilities: 7 see that I f i t in perfectly into society. B u t society, I feel, has a problem with me. I am a person! I think that people need to give us a chance. They have to learn to accept and adapt to p eo p le with disabilities. Society lim its its e lf by lim ­ iting us. ’. If Paul accepted the labels and associated expectations that soci­ ety im posed upon him and his disability, then he would have to relinquish the validation o f his self-image as a unique individual (Nochi, 1998). His narrative resonated w ith the sentim ent that he was not w illing to accept society’s labels and was clearly deter­ m ined to carve out a positive self-identity, and receive acknowl­ edgem ent for the person that he is; a determ ination historically rooted and linked to his resistance identity. P a u l’s construction o f self-knowledge and ultim ately the reconstruction o f his self via new experiences is a deeply com plex concept. A ttem pting to engage with this com plex process can only serve to deepen an understanding o f the lived experience o f TBI in all its m ultifari­ ous components. Constructing a positive self-identity post-TBI In exploring the process o f positive identity construction post TBI, issues o f attitude, hope and illness as m oral re­ awakening were central features. M oral re-aw akening refers to a renew ed sense o f spirituality that is drawn from an experience o f illness or disability (Frank, 1997). A ttitu d in a l dim ensions P au l’s story resonated with courage, hope and an ultim ate acceptance o f all that has occurred in his life thus far, with spe­ cific reference to the accident and resulting injuries. He ac­ know ledged, after an ongoing period o f grieving (at', least four years post injury), that life goes on. W ith this acceptance o f the w ay his life unfolded, Paul chose to adopt an attitude that would facilitate his transition into a new life with optim ism and strength o f spirit: 7 have two choices: I can either be happy and accept what is happening a n d look fo rw a rd to the future, or be sa d and re­ g re t what is done ’ P au l’s attitude was infused with hope. He chose to use the ex­ perience o f the accident in his favour. Instead o f allow ing him self to be paralysed with sadness, resentm ent and regret at the course his life has taken, Paul resolved to pursue his^ challenges with courage and hope. Rem arkably, the very event that had caused his life to be steered in a direction he did not anticipate, had also enabled him to discover certain truths about himself: 7 used to be very naive and'carefree. B u t the accident has transform ed m y life, the way I see things. I fe e l more grounded. I ’m able to see the lighter side o f things. I used to Die Suid-Afrikaanse Tydskrif vir Kommunikasieafwykings, Vol. 53, 2006 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. ) Identity Construction Following Traumatic Brain Injury: A Case Study 23 be a very negative guy. ’ Evidently, the accident had changed P au l’s life transform ing the way he saw and experienced his world. He had been thrust from complacency to an appreciation o f life with all its com plexity and contradiction. Paul felt that the accident had granted him the op­ portunity to reconstruct h im self positively. M oreover, while Paul was initially plagued by feelings o f insecurity and loneliness fos­ tered by a less than ideal fam ily dynam ic, he later (post-TBI) experienced greater stability due to im proved personal relation­ ships. P a u l’s reaction to the accident, resultant injuries and the pervasive im pact it had exerted on his life and sense o f self clearly contradicted the conventional notion that traum atic ex­ periences produce an ongoing sense o f loss and devastation (Schlenker, 1987). He chose to com m unicate his responses in a positive way, thus constructing a positive social identity, which in turn influenced his actions and responses to certain life events. While the experience o f loss is a real part o f the experience, Paul’s story highlights the fact that it does not continue indefi­ nitely, thus contradicting the m edical notion that people live in a continual state o f loss. M oral re-awakening P au l’s self-narrative echoed with hope and optim ism for the future. His plans included sharing his life with his significant other and creating vocational opportunities for himself. He em­ phasised the role o f spirituality in his positive reconstruction: ‘The one and only thing I can rem em ber fr o m m y coma is saying God, p lea se d o n ’t let me go. I was literally begging G od ju s t to let me live, especially f o r my mother. Since then ' religion has becom e so im portant to me. I t ’s brought m y life into perspective. I t has made me realise w hat is really impor­ tant to me. I value m y mom a n d m y fia n c e equally. A n d my religion supersedes them. I have also learned to take g o o d care o f myself, to value m y general well-being. A n d fa m ily is the m ost im portant thing to me. ’ In this vein, P a u l’s narrative is closely aligned with F rank’s (1995) quest narrative, w hich encounters suffering boldly, ac­ cepts illness and uses it heroically. Q uest narratives involve per­ severance and are oriented tow ard the future. Illness is thus not viewed as an interruption that m ust be overcome b ut rather as a challenge that must be m et andj from which the individual can gain som ething meaningful. Illness is seen as a critical event that becom es an occasion to turn an inner gaze and to engage in a moral questioning o f who we arel(Frank, 1997). P a u l’s narrative reflects the polyphonic nature o f a quest narrative w here m ultiple voices echo complex, interw oven and often contradictory values and stories and represent an affirm a­ tion o f identity (Frank, 1995). Thus, in P a u l’s life story, living with an acquired disability was n ot view ed entirely as fatalistic but was em braced as part o f his com plex life experience. The sense o f hope that Paul fostered represented new meanings that he created o f h im self through the experience o f trauma. K leinm an (1988) contends that the experience o f a critical event need not be experienced as a self-defeating exercise but can be used as a con­ duit to deeper and better things. Hope is b o m from the personal and cultural dilemmas that are induced by illness, forcing one to turn to sources o f m eaning that are already present in our lives (Kleinman, 1988). A lthough Paul was often plagued by despair and repeatedly questioned his fate, there was an overriding sense o f resolution and motivation: ( 7 believe that G od is supreme. H e is in charge o f absolutely everything. A n d i f H e w anted this to happen, there had to be a Way. I t h a d to be H is Will. I f G od is willing, who am I to question that? H e has helped to improve m y life. Things can only g e t better. I believe that G od gives us gifts. I f we d o n 't use them, he takes them away a n d in so doing takes a chunk o f our lives away. M y g ift fro m H im is to help p eo p le by sh a r­ ing m y experiences with them a n d I ’m trying to p u t back into society w hat I ’ve taken out. To search within m y se lf a n d make a difference to o th e rs’ lives. T h a t’s why these m otiva­ tional talks that I give are so im portant to me. Sharing m y experiences also helps me com e to term s with w here I am right now. ’ Through his spiritual growth, Paul was able to reach out to others, sharing his experiences with them and strengthening his self- identity. Paul saw his ability to do this as a divine gift and in so doing recognised that his own life experiences could be used as valuable lessons not only to others but to h im self as well. H is desire to help others resonates w ith.K leinm an’s (1988) suggestion that illness heightens o n e’s aw areness o f other peo p le’s suffering, thus m aking one m ore inclined to behave in ways that would help to reduce the suffering o f others and allow one to assume respon­ sibility for others. The m otivational talks Paul presented, p ro ­ vided a valuable opportunity for his personal growth following the accident. In giving to others, P a u l’s feelings o f self-worth were reaffirm ed. He used his com m unication skills positively and to his benefit, despite the dysarthria. Paul was able to view the events o f his life as m eaningful and purposeful, thus em pow­ ering him w ith hope and the ability to perceive and m aintain an im portant role in society. It is alm ost as if, in living a post- traum atic life, P aul’s traum a has becom e the source o f his work, which in turn has becom e a source o f community, nurturing po s­ sibilities o f new role-taking and m eaning-m aking (Frank, 1997). IM PLIC A TIO N S, REC O M M EN D A TIO N S AND LIM ITATIO NS The study holds significant im plications at various levels. The contributions o f life history research are linked to its intellec­ tual and moral purpose and its potential to provide insight into individual lives (Cole & Knowles, 2001). The present study holds the potential to provide a research m ethodological tool for exploring in greater depth the lives o f the people w ith whom cli­ nicians work. Life history research can be utilised to engage at deeper levels w ith individuals who experience TBI and its conse­ quences, as illustrated in P au l’s case. Im portantly, the study has also shown that even when p eo ­ p le present with com m unication im pairm ent they have stories to tell and as such should be granted the opportunity to be heard. Life history research has the potential to provide a platform upon w hich discourse around individuals with disabilities, who have been m arginalized from the dom inant research dialogue, may be informed. P au l’s story highlighted this notion and illum inated the com plexity o f issues underlying self-identity and com m unication. The use o f life histories as a clinical m ethod can be ex­ plored w ithin SLT contexts. W hile com m unication is the focus o f intervention, it is also pivotal to creating self-identity. Therefore, when applied to the understanding o f an individual who has sur­ vived a TBI, com m unication is the instrum ent used to generate a life story account o f experience. B y understanding the critical dual role o f com m unication as both an intervention need, as well as in constructing self-identity, clinical interventions can becom e m ore client-centred. The know ledge produced in this study can thus encourage clinicians to understand their clients' com m unica­ The South African Journal o f Communication Disorders, Vol. 53, 2006 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. ) 24 Ayesha Sabat, Legini Moodley and Harsha Kathard tion needs as they relate to the individual’s sense o f se lf in his/her life context. W hen com m unication is view ed in this way, it m ay assist the clinician in thinking through intervention goals for the individual and to understand the types o f intervention that are necessary. Clinicians who have read P au l’s story at a general hospital in Johannesburg, South A frica and Sandwell, England have indi­ cated that life history has potential as a clinical tool. W hilst clini­ cians often use a case history, this tool traces the history o f the disorder while the life history interview offers potential to under­ stand how individuals live with disorders. B y developing client- centred therapy goals, the clinician is able to generate relevant functional com m unication intervention. They also reported that using life histories in therapy w ould highlight the importance o f other life issues (em ploym ent, housing, relationships, physical m obility, inability to drive) w hich are im portant to consider when setting intervention goals and strategies. A lthough com m unica­ tion was an im portant issue, it rem ained em bedded within an identity frame. However, time constraints were cited as a con­ cern and lim itation to the clinical im plem entation o f life histories. Furtherm ore, the SLTs reported that reading this particular narrative challenged their perceptions o f people with disabilities as they acknow ledged that positive experiences could emerge from an event such as TBI. This notion resonates with P ound’s (1993) assertion that it is critical for SLTs to develop a height­ ened awareness and deeper understanding o f the m ulti-faceted nature o f individuals’ responses to disability, in order to appreci­ ate a different perspective and to cultivate positive attitudes amongst professionals. She m aintained that if therapists adopt negative attitudes to disability by focusing on impairm ent, it is likely to lead to negative stereotyping o f people w ith disabilities. This attitude hinders the recognition o f the potential o f people w ith disabilities to take control over their changing lives. Clini­ cians are encouraged to critically evaluate their own beliefs and attitudes to ensure that their practice removes, rather than creates, disabling barriers. W hen applied to P a u l’s case, it w ould have been easy to interpret P a u l’s experiences in general, and his com ­ m unication difficulties in particular, as negative events. His nar­ rative, however, proved otherwise. In the field o f TBI particularly, SLTs m ust be cognisant o f w hat role they can play in strengthening the positive self-identity trajectory. The com m unication intervention program therefore depends on the clinician’s ability to consider issues o f the client’s potential and his/her understanding o f disability. In P a u l’s story for example, his optim istic appraisal o f experience could well be overlooked in a therapy program that is not sensitive to the com ­ plex processes underlying the construction o f his positive self- identity post TBI. It w ould be imperative to engage w ith P a u l’s affirm ing attitude and inner self if relevant therapy goals and in­ tervention plans are to be produced. The intim ate link between his com m unication and self-identity w ould be the key to fostering optim al intervention. Life history research also engages with the spiritual and m oral dimensions o f the individual. As discussed, P au l’s story resonated w ith a sense o f moral awakening. His experience o f TBI has ignited a deeper life m eaning and spiritual awakening that forms the basis o f how he lives, com m unicates and interacts with people. Through understanding these deeper dimensions o f the individual, clinicians m ay be able to sharpen their insight into the m ultifaceted nature o f hum an experience. W hile the body/ im pairm ent aspects o f interventions have received prim ary atten­ tion in the Speech-Language Pathology literature, issues o f spiri­ tuality w ould appear to have received marginal coverage (Jordan & Bryan, 2001). H owever, P au l’s story implies that clinicians should understand and interact with issues o f spirituality where they are apparent i f they are to engage with personally meaningful interventions. The use o f narratives in aphasia therapy is endorsed by Pound et al. (2000) who encourage SLTs to sharpen their listening skills and hone in on their ability to facilitate storytelling, as the value o f narrative m edicine can be used as a pow erful tool for fuelling therapeutic interventions and m easuring outcom es. The very act o f telling o n e’s story has potential to produce a therapeu­ tic and cathartic effect for the storyteller. Em pirical research that has been conducted on the use o f narrative constructions with diverse populations experiencing chronic conditions has indicated that narratives o f emotional experiences have produced positive changes in these individuals (Nochi, 2000; Parr et al., 1997). Practically, for the individuals whose lives were irrevoca­ b ly affected by the experience o f TBI, this study could be used to inform and educate the public about the issues raised. Societal notions o f disability need to be challenged to facilitate the suc­ cessful integration o f people with disabilities. Again, intervention should encompass the gam ut o f the personal experience o f dis­ ability, extending beyond a focus on the personal to the social creation o f disability. The study has social and political implica­ tions in that the issues o f disability that have been raised have the potential to influence the w ay society perceives people with dis­ abilities. Instead o f view ing “pathology” and “norm al” as dispa­ rate entities, they can be seen and appreciated as varieties along a continuum o f m odes o f being-in-the-w orld (Papadim itriou, 2001, p. 10), thus encouraging clinicians as well as the public to appreci­ ate disability as a continuum o f hum an diversity. A t a theoretical level, the issues raised in the study are congruent with the m ove tow ard em bracing the social model of disability and procuring subjective perspectives on the experience o f disability (Hilari & Byng, 2001; Frank 1997; N ochi, 2000; N o­ chi, 1998; Parr et al., 1997). The study contributes to a growing body o f research on the personal m eaning ascribed to certain life experiences, such as acquiring a disability. Furtherm ore, the study has highlighted issues o f com m unication that are embedded within a self-identity development. The strengths o f the study include the data collection m ethod, nam ely a series o f multiple, in-depth interviews, thus yielding value laden, inform ation-rich data. Furtherm ore, by virtue o f the life history m ethodology im plem ented, an emic (insider) perspective is provided, as the narrator was able to con­ struct his self-identity and life via the narrative process. A pilot study was conducted in order to evaluate the efficacy o f the inter­ view schedule (data collection tool), interview process, data analysis, and the overall logistics o f the interview procedure, thus enhancing the trustw orthiness o f the main study. A single case study design facilitated an in-depth exploration and understanding o f what it means to be a survivor o f TBI. M oreover, the research story was analysed qualitatively, facilitating insight and a deeper understanding o f the experience o f TBI w ithin the broader land­ scape o f the participant’s lifeworld. As described under participant selection criteria, the par­ ticipant was required to have sufficient cognitive and com m unica­ tive ability to be included in the study. These were not stipulated as exclusionary criteria, but rather to facilitate the process and provide relevant know ledge about the particular case. Since this is still a developing m ethodology, future research could look to including people with severe cognitive and com m unication diffi­ culties to expand the know ledge base. This w ould require refin­ ing the current m ethodology considerably. For example, encour­ Die Suid-Afrikaanse Tydskrif vir Kommunikasieafwykings, Vol. 53, 2006 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. ) Identity Construction Following Traumatic Brain Injury: A Case Study 25 aging the narrator to em ploy A lternative and A ugm entative Communication (AAC) devices, drawing, symbols, and ges­ tures to convey a m eaningful story. The stance o f the re­ searcher in this instance m ay also change. Instead o f using open ended questions, s/he m ay need to use forced alternative questioning in order to procure inform ation from the narrator. A limitation worth noting is that im posed by the con­ straints o f language and text. However, even within linguistic and textual restrictions, it is possible to provide a m eaningful representation o f one’s life within the text (Clandinin & C on­ nelly, 2000). M em ory also im poses restrictions on the narra­ tive, as events are selectively revealed, thus despite prolonged engagement with the participant, his/her revelations will always be constrained. This is, however, the nature o f retelling experi­ ence but should be considered particularly when interviewing participants who have m em ory problem s. CONCLUSION This study explored the process o f self-identity construc­ tion pre and post TBI, using a life history m ethodology. The results highlighted the interaction o f com plex variables underly­ ing the process o f self-identity form ation in a survivor o f TBI. The self is seen as central to action. The role o f com m unication in negotiating and representing self-identity is illuminated. The participant’s narrative highlighted his life experience in the p e­ riod preceding and following a head injury. The story revealed how critical early life experiences, fashioned through interac­ tion with significant others (family, peers), shaped self-identity and the ability to negotiate significant life changes incurred by the head injury. The evolution o f a positive self-identity is traced. P au l’s self-identity was constructed via his dialogue. His com m unication was entw ined with all aspects o f his life and served to present a particular social persona. Paul used his communication strengths positively in constructing and affirm ­ ing his altered post injury self-identity. Illness as an experience o f moral awakening is highlighted, as P au l’s deep spirituality enabled him to nurture hope for the future, to look forward to living and sharing his life with his significant other. In this re­ gard, Paul has becom e the ultim ate architect o f his own social reality. A C K N O W LEDG EM ENTS This article is based on a dissertation submitted to the U niver­ sity o f K w aZulu N atal b y the first author, under supervision o f the second and third authors, M s ilegini M oodley and Prof. Har- sha Kathard, in partial fulfilm ent o f the requirem ents for the Degree M asters in C om m unication Pathology (Speech- REFERENCES Atkinson, R. (1998). The life story interview. Newbury Park, Califor­ nia: Sage Publications, Inc. Brumfitt, S. (1998). The measurement of psychological well being in the person with aphasia. International Journal o f Communica­ tion Disorders, 33, 116-120. Clandinin, D.J., & Connelly, F.M. (2000). 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The interviews u nfolded in the direction the pa rticip a n t took, with som e guidance being offered by the researcher. ❖ W here / when were you bom , earliest childhood m em ories, what was your fam ily like, describe your parents, siblings, grandparents? ❖ Tell me about your linguistic, cultural, social and racial background ❖ Tell me about the most significant events in your life ❖ W hat academ ic qualifications do you have? ❖ Tell me about your earliest childhood memories ❖ W hat were your experiences like at school? ❖ Do you see education as playing an im portant role in o n e’s life? ❖ W ho were your role models? ❖ W hat did you want to becom e on graduating from school? ❖ Describe the political climate w hen you were growing up ❖ Tell me m ore about the accident ❖ How has having sustained a head injury changed your life? ❖ H ow do you view disability? ❖ W hat are the challenges you face as a person with a disability? ❖ H ow has the accident im pacted on your relationships with fam ily and friends ♦♦♦ D id you find the rehabilitation services rendered to you follow ing the accident effective? ❖ W hat are your hopes for the future? ❖ Is there anything we m ay have om itted from your life story? ❖ Do you have any com m ents about the interviews and all that has been discussed? ❖ D id you find that talking about your life was a therapeutic experience? ❖ D id it have a cathartic effect on you? Die Suid-Afrikaanse Tydskrif vir Kommunikasieafwykings, Vol. 53, 2006 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. )