Epistemological Intimacy: A Move to Autoethnography

Introduction

Where should I place myself? Who was I in the study? Was I using the most appropriate method to unearth the rich data I believed were present, data that I needed best to answer the research questions? I considered these questions as I conscientiously collected data and followed standard university procedure during my first foray into qualitative research. I was intent on completing a study and writing a thesis, requirements for the master's in education program in which I was enrolled. The result, which was completed after a journey of relentless methodological questioning that was at times too personal, is a thesis called Creatively Rehabilitating Self-Esteem After an Acquired Brain Injury: An Auto-Ethnography of Healing (Smith, 2004).

In 1997, I sustained a severe acquired brain injury (ABI). After 3 years of recovery, I shut the door on my preinjury career and went back to school. For my master's thesis, I chose to explore the impact of creativity on the self-esteem of individuals who have sustained ABIs from the perspective of the unique culture of ABI in which I found myself postinjury. I felt privileged to be able to offer such an intimate and exclusive “insider” portrayal of life after an ABI and the struggle that such a life can be. My experiences engaging in creativity during my recovery from ABI provided the inspirational fuel I needed to decide what to explore for my thesis. How did I arrive at the method I eventually chose to use for the study? How did I become a participant as well as the researcher? These questions address issues that make interesting stories of process, stories that I will tell after giving a summary of the study.

The study

The study involved 4 participants and included me as the researcher and 5th participant. The purpose of the study was to explore the use of creative activities to enhance the self-esteem of individuals who have sustained an acquired brain injury. The participants were clients of a local head injury rehabilitation center. The therapists at this facility recommended individuals who they felt would be beneficial to the study and would also be affected positively by being part of the study. All of the participants signed ethics consent forms, and they were all offered copies of the completed thesis.

During the 6-week period of data collection, each participant completed a creative project. Data were collected in multiple forms: participant observation (Marshall & Rossman, 1999; Tedlock, 1991, 2000), informal interviews as suggested by Creswell (1998), conversations, group informal interviews, e-mails, and talks with third-party therapists. The data analysis phase began with the transcription of the interviews and member checking of these interviews. I then coded the data by hand, making full use of the multiple forms of data I had collected. Triangulation of these data sources legitimized the findings (Creswell, 2002; Merriam, 2001; Wolcott, 1994). After my “prolonged engagement with the data” (Marshall & Rossman, 1999, p. 154), I eventually uncovered four main themes. The findings indicated that engagement in creative activities is a positive addition to ABI rehabilitation because of its favorable impact on self-esteem.

My personal experience during my rehabilitation had shown me that completing creative projects had a significant impact on my self-esteem. During recovery from any ABI, the focus is totally on therapy and rehabilitation. In the first 2 years of my rehabilitation, I had no short-range goals, projects that provide a sense of accomplishment, pride, and increased self-esteem to any individual. The first goals I had that had conveyed these needed feelings consisted of the completion of creative projects. When I returned to school, I felt that the use of creative activities to enhance the self-esteem of individuals who had sustained ABIs was not only something that I could investigate but also something to which I could contribute personally.

Other researchers have explored similar topics, ranging from the use of creative activities to improve self-esteem and sense of self in individuals, to using creative activities as an alternative form of communicating feelings and thoughts (Aldridge, 1991; Gamwell, 2002; Henderson & Gladding, 1998; Jennings & Minde, 1993; Johnson, 1984, 1985, 1999; McNiff, 1997; Tamminen, 1998). The positive impact of engaging in creative activities on self-esteem in individuals who have disability or are ill (Gladding, 1995; Sacks, 1986; Simon, 1997) has also been explored. This study takes one further step, because it examines the consequences of engaging in creative activities when the participants are survivors of ABIs. Certainly, the study is unique, not only because am I the researcher but also because I am a member of the culture being studied, the culture of ABI.

The methodological journey

After much reading and reflection leading to seemingly interminable incubation (Wallas, 1926), I wrote my MA thesis as an autoethnography. Although I was in a quandary at the time about the process of finding the most fitting method, in retrospect it was an educational and enlightening exercise. As Denzin and Lincoln (2000) have suggested, I began by asking myself the question, How could I best gain knowledge about the world of ABI? The dilemma of finding the optimal epistemological place in which to situate myself (Pinsent Johnson, Smith, & Thompson, 2003) when conducting the study haunted me as I devoured literature on the methods associated with the participatory paradigm (Denzin & Lincoln, 2000). What was my place in the study? Because of my unusual closeness to the subject I was researching, I knew that I was more than just the researcher. How could I most effectively tailor the fit of method to that of my role in the study?

I had originally chosen to use a personal experience narrative to explore the research question. This method is defined by Creswell (2002) as “a narrative study of an individual's personal experience found in single or multiple episodes” (p. 524). However, as time went on, I found that I needed to narrow the method down even more. Sustaining an ABI had not only redirected my life; the experience had changed the person I was into the person I am now. Irrevocably, I am now different. I was afraid that my experiences would color and influence my interpretations of the participants' experiences. Although I was very aware of the possibility that this might happen, I felt that just recognizing the danger of this occurring would not be enough. I had to take action and adopt a position that would not only legitimize my voice but also allow me to express my thoughts without marginalizing the voices of the participants. I knew that I had to be careful when choosing the method so that I would be able to convey the results of this study optimally.

It became clear that because I was examining the culture of a group, in this case people who had sustained ABIs, the method I would eventually use should incorporate ethnography. Ethnography has been defined by Chambers (2000) as an “inquiry that aim[s] to describe or interpret the place of [a] culture in human affairs…composed of those understandings and ways of understanding that are judged to be characteristic of a discernable group” (p. 852). I used the definition of culture proposed by Wolcott (1999): “Culture is an account of particular social processes as practiced by particular people in particular settings” (p. 253). This study describes and interprets the culture of ABI, a culture that has distinguishing qualities, as does any culture. Some of these qualities make aspects of reintegration into society difficult after an ABI, for example, when survivors try to fit into old social roles. Consequently, individuals who have sustained ABIs sometimes feel like outsiders in society (Seaton, 1998).

Because of the unique qualities of the culture of ABI, ethnography appeared to be an appropriate method. I questioned, however, whether ethnography would give me enough latitude to address fully the study's purpose, which was to explore the use of creative activities to enhance the self-esteem of individuals who have sustained an ABI. I felt I needed to include my opinions, views, and feelings on the subject, because I am from the same culture as the study's participants. My experiences mattered too, and my input, in terms of reflections, feelings, insights, and experiences, appeared to me to be integral to the study. However, if I used the traditional method of ethnography, whereby I would be in the standard role of researcher, I would be forced to ignore my experiences, which were guaranteed to produce very relevant data. I realized that my input might be invaluable in the context of this particular study. My contributions, as the researcher, would be as valid as those of the participants. I was as much a part of the ABI culture as they were.

The decision: Autoethnography

As Jenks (2002) has neatly summarized, my experiences undoubtedly have affected what I observed, what I wrote, and how others will interpret and react to what I wrote. Therefore, in the end, it was inescapable that I chose to use autoethnography as my method. By definition, autoethnography enabled me to tell the story of my life-changing experiences of ABI and incorporate my views, thoughts, and story to enrich the ethnography of my participants (Denzin, 1989; Reed-Danahay, 1997). Using autoethnography permitted my experiences to play a valid role in the study, because the genre includes the researcher as a participant. As Gergen and Gergen (2002) eloquently stated, “In using oneself as an ethnographic exemplar, the researcher is freed from the traditional conventions of writing. One's unique voicings—complete with colloquialisms, reverberations from multiple relationships, and emotional expressiveness—is honored” (p. 14). Therefore, autoethnography allowed me, in my role as the researcher who has sustained an ABI, to add my views and thoughts of the experience to enrich the story for the readers (Smith, 2004). Fittingly, Creswell (2002) has listed autoethnography as a type of narrative research, so, according to Creswell, I was still using my original choice of method.

The genre autoethnography enhances the study for the readers by allowing me, in my role as researcher, to inject my interpretations of my own experiences. Because I am from the same culture, I can, as Goodall (2000) has suggested, look at my own story through the same lens that I am using to interpret the worlds of my participants. In this study, although I was a researcher-participant, I most certainly did not passively record and report. I invariably found I had to relinquish my views and understandings to grasp the full significance of what the participants were saying (Marshall & Rossman, 1999). I was able to emphasize the importance of the recovery process (Wolcott, 1999) for all the participants, giving them all equal voice. All of the participants realized that their participation in the study could potentially benefit others. They could demonstrate the positive influence of using creative activities as part of the process of ABI rehabilitation. They felt important and, most of all, respected. I made it clear to them that by doing creative work as part of their rehabilitation, they were helping to establish the significance of this type of rehabilitation for other survivors of ABI. Because the study was an autoethnography, my reality, as researcher-participant, is seen through a unique window to the world (Mykhalovskiy, 1997), one that could have been experienced only when participating actively in the study.

What is autoethnography?

By using autoethnography, researchers can use their experiences, together with those of other participants, to complement their research. Autoethnographies can use alternate forms of representation, such as short stories, poems, and artistic interpretations. The term was originally coined by Hayano (1979) to refer to anthropological studies by individuals of their own culture. The exact definition of the term is elusive, and there are many other genres, too numerous to list, that fall under its umbrella (Ellis & Bochner, 2000). Behar (1996) has described emerging genres, such as autoethnography, as efforts “to map an intermediate space we can't quite define yet, a borderland between passion and intellect, analysis and subjectivity, ethnography and autobiography, art and life” (p. 174).

Being the researcher

As a participant in this study, I, too, had to complete a creative activity. I did not know what to do. I could paint with acrylics, or I could paint pottery, things I do on a regular basis. It finally occurred to me that completing this thesis would do wonders for my self-esteem. My creative project could be my master's thesis. I had spent a long time in recovery and then more time completing the MA course requirements before embarking on the thesis. It had been 7 years since the accident, 7 years since I had completed a major project. I was satisfying the guidelines I had set for my participants: The thesis was a creative project. Because I am a creative person, I had already intended to take full advantage of the alternative representations of the paradigm I was using. In the end, I included a short story of my personal journey and a play written from a focus group interview, and I painted a 4‘ × 6‘ (1.2 × 1.8 m) pictorial representation of the data analysis (Wolcott, 1994).

These elements contributed richness to the data, both because they are innovative and because they allowed me, as the researcher, to provide unique glimpses both of my own story and of the study. The short story added my interpretation to the long recovery I had undergone. I used the metaphor of a long tunnel for my recovery. I tried to write the story as I was during specific times. For example, initially I was speaking in short sentences and walking very unsteadily. The unsteady walking is symbolized by deep, shifting sand on the tunnel floor. The focus group that I wrote as a play lets the reader peek into the unique relationships I had with the participants. I was able to show that the participants had no trouble teasing me; this indicates a level playing field between us. They were open and frank among themselves but also when they were one on one with me. The painting of the data analysis showed the participants, portrayed as fish, swimming among the themes, symbolized by seaweed. As well as being a very effective visual representation, portraying the analysis in this way let me use my creativity.

The participants

When researchers are becoming familiar with a new method, it is incumbent on them not only to recognize the positives that have drawn them to the methodology but also to make themselves aware of its potential shortcomings. There is a fine balance between the added insight that autoethnography allows and the lack of clarity that can occur when researchers do not define their positions clearly within their autoethnographical studies. One of the potential dangers that exist is that in their drive to become as close to the participants as possible, the fine line that researchers draw between themselves and their participants will be too blurry. For example, in an effort to become privy to more information from Sally (all names are pseudonyms), one of my participants, I told her too much about myself. As a result, she “crowded my space” and tried to put herself in a friend role (Smith, 2004). The questioning and probing of my personal experience that occurred made me extremely uncomfortable. Unbeknownst to me, I was experiencing transference, which occurs when clients identify too closely with therapists. Sally was trying to “fast-forward” our relationship—what she would know about me, what I would tell her—without my consent. I was not prepared to change the participant-researcher relationship we had into the relationship she wanted, one in which we would become confidantes and friends. As soon as I left Sally's apartment that day, I called my therapist, who explained what she suspected had happened. This incident caused me to realize that in the future, I would have to examine carefully how to tailor my relationship uniquely with individual participants to maximize their contributions to the study.

Another experience of refining the researcher-participant relationship to optimize the data I gathered was more successful. Jim was bright, cheerful, and eager to contribute. A stroke had left his speech very difficult to understand, so rather than recording conversations, he would e-mail me comments and thoughts regularly. These e-mails were observant and full of rich information. I found, though, that I needed to refine our relationship to glean yet more insight into his character, so I suggested that we join a hockey pool together. Although this was something that was completely separate from the creative activity of the study, it could not have been a better move! I was inundated with e-mail explaining what was happening (I know nothing about hockey) and what our current position in the pool was. The serendipitous move was fortunate. I gained much insight into the kind, generous man who was my most forthcoming participant. This showed me, as Sally had, how I had to consider each participant individually. My relationship with each one would be different.

There was one unanticipated and very positive result from this study. All participants felt that this was “their” study. This factor added hugely to their self-esteem. Jim was no end of help; he emailed me faithfully and answered all questions with careful consideration. Diana made a commitment to meet every week; she was always there, full of meaningful conversation. Sally penciled in our weekly time; she was attentive and always sent me e-mails of her thoughts and reflections. After the focus group interview, I invited the participants to lunch. Only Diana and Sally could come, but they talked nonstop, to the point where I finally had to go, and so I left them, still talking! Working with Valerie gave me insight into how to interact with individuals who are significantly cognitively impaired. Valerie's caregiver made sure she was always there for my meetings with Valerie.

Conclusion

Because I am also an ABI survivor, using autoethnography enabled me to explore my subjective and cultural experiences as well as those of my participants. Autoethnography allowed my personal experiences to become valid data. I was able to research, explore, and use a relatively new genre for the purposes for which it was intended. Autoethnography freed me to write reflectively, thoughtfully, and introspectively about a very personal subject close to my heart. Completing this autoethnography contributed to my healing, because, as Behar (2003) commented with reference to her experiences, it helped me to come “a full circle, or better, the circle widened, stretched, opened for me” (p. 342).

I believe I enriched and added credibility to the research and exploration of a marginalized and very specialized population by using autoethnography. None of the participants chose to read the study, but they were pleased to hear that it had been nominated for a prize at my university. As a result, my first foray into qualitative research has, I hope, opened many eyes to the realities of life after an acquired brain injury and to the possibilities that autoethnography offers as a method. As a method for someone with a unique perspective, or from an “other” culture with a one-of-a-kind story to tell, autoethnography affords the opportunity for self-reflection. At the same time, it gives voice to others from the researcher's culture.