Abstract
This article examines how an African American mother's affinity for digital tools relates to her telling of traumatic narratives, and how the very personal information contained in such narratives often problematizes the methodology of reporting qualitative research methods. These tensions include the concept of T.M.I. in qualitative research, as well as related ethical issues such as participant vulnerability, informed consent, and risks and benefits. This work addresses three key roles relevant to T.M.I.: that of the participant, the researcher, and the journal reviewer. It also provides researchers with various recommendations for conducting unconventional, agentic, and activist research.
While listening to my father's whimsical stories about growing up, I often found myself holding up my hand and saying, “Dad, T.M.I.” (too much information). His response would be: “Yeah, but it's the truth.” In some homes, stories are shared, discussed, and interpreted, revealing the relevance of topics and experiences that inform and transform our everyday lives. As Bruner (2004) notes, “Home is a place that is inside, private, forgiving, intimate, predictably safe” (p. 703). Within the confines of time and space, both within and outside the home, our stories sit in for life (Ellis & Bochner, 1996). They take on lives of their own and can extend for days, months, and even years, taking in all of the patterns we have experienced over time (e.g., storytelling). My dad's comfort with telling “the truth” made me feel uncomfortable when listening to certain stories. As his adult daughter, I wanted to preserve my image of who my father was. For some reason, my image of myself as a daughter is rarely consistent with my image of myself as an independent adult woman. When it came to my father's storytelling, I felt like there were some stories I should not be privy to. However, as a researcher many years later, I realize that my responsibility to hear T.M.I. given by research participants is a role that I and all researchers inevitably play.
In this article, I introduce the idea of T.M.I. in qualitative research with interrelated conceptual issues of vulnerability, informed consent, and the risks and benefits to participants in research. Within this vein, I explore what happens when a participant shares T.M.I. about personal traumatic narratives, examining the case of an African American mother (Larnee) (all names are pseudonyms), her digital literacy practices within the home, and the ways in which the pieces of her personal life kept interjecting into the research, which problematized what and how I, as the researcher, understood and documented her traumatic narratives. I define digital literacies as multiple and interactive practices, mediated by technological tools such as the Internet, cell phones, and video games that involve reading, writing, language, and exchanging information in online environments (Lewis, 2009). My role in this study ultimately evolved into one as a researcher-participant (Coleman, 2005; Mitchell, 2010), wherein I engaged in data collection along with Larnee. Over time, Larnee's stories became more telling and intimate, which initially made me feel uncomfortable as I was often unsure where her stories would lead. However, as Larnee became a storyteller, I became a story recorder, writing, and collecting her various narratives. In essence, I became a vehicle through which Larnee processed and viewed her stories through another lens.
This discussion is couched in a larger one about the ways in which vulnerability (the possibility of negatively influencing the description, protection, and interpretation of an individual's status or position in society) is a reciprocal process for the researched as well as for the researcher; how informed consent is a continual process; and how risks and benefits are situated in scholarship within the area of research ethics.
T.M.I. and Vulnerability in Stories
T.M.I. is a situation in which someone shares too much information about a deeply personal topic and/or experience. Typically, the listener in this situation feels uncomfortable, and it may lead to unwanted, nonnegotiable, but solicited, images in one's head. T.M.I. can also be a way of silencing, though its uses differ depending on the relationship of the individual. For instance, listening to and reporting participants' sensitive and traumatic narratives can often cause the researcher to be considered as a vulnerable observer, as theorized by Behar (1996), one who is actively involved with the participant under study.
As ethnographers in qualitative research, we are both receivers and givers of stories. The sharing of stories in research is significant; however, not all stories are always welcomed. In fact, some can bring with them unexpected vulnerabilities and discomfort for both the participant and the researcher. As researchers, we want data to answer our questions and inform our thinking, but the ways in which data are presented are never predictable. Data collection can be risky, raising questions about ethics and responsibility, and causing a phethora of limitations and disclaimers of what is deemed “appropriate” in research and academic settings (Tisdale, 2003; Wiseman & Wissman, 2010).
Participants' stories are gifts; at times they highlight the sometimes unnoticeable nuances of life and broach unspeakable topics in ways that encourage sympathetic dialogue even as they create tensions and challenges. However, Bochner and Ellis (1996) argue that, “Some stories aren't intended to encourage dialogue. But we can learn from these stories. We can understand better what new directions to take, when alienating our readers' works against our purposes, and when it may be necessary in order to challenge the assumptions they take for granted” (p. 25). Thus, researchers often become vulnerable observers when participants' trauma narratives are shared, and further exploration of this unique perspective cultivates relevant dialogue for researchers who, at one time or another, have witnessed or documented such narratives.
Literature Review
Trauma Narratives/Trauma Studies
In search of a theoretical lens supporting traumatic narratives among individuals, I turned to the interdisciplinary field of trauma narratives/trauma studies. Trauma has been “associated with memories of events that are uncontrollable” (Pickering & Keightley, 2009, p. 237). Studies of trauma have also been related to historical incidents affecting large groups of people such as African Americans during the institution of slavery, Jewish victims of the Holocaust, residents of New Orleans during Hurricane Katina (Bedford & Brenner, 2010), and American citizens who experienced the events and aftermath of September 11 (Eng & Kazanjian, 2003; Whitehead, 2004). Additionally, studies of trauma also touch upon personal experiences with the loss of family members (Dutro, 2008), poverty (Sitler, 2008), sexual violation, and various forms of abuse (Fox, 1996; Pickering & Keightley, 2009). Personal narratives about these and other sensitive topics allow the storyteller to construct the ways these events tell about individuals' lives (Bruner, 2004).
Trauma narratives become relevant and creative in the ways they are both told and received. For example, Dutro's (2008) work highlighted four African American fifth-grade girls' traumatic experiences as “testimony and witness” as shared in their responses to literature during their book club discussions. Dutro (2008) focused on trauma as a “response to reading” in an effort to draw conclusions about the relationship between trauma and the English classroom (p. 424). This work challenged how students' stories and experiences of the deaths of loved ones were welcomed or silenced in their classrooms. In addition, it gave Dutro (2008) an open forum to share her childhood traumatic experience of losing her younger brother in a tragic accident. As a result, Dutro (2008) argued for reconsideration and revision of today's pedagogical classrooms, highlighting the necessity of advocacy for hard, raw, and descriptive personal narratives from young students—both in the testimony and witness of their experiences in relation to the texts they read, and in their responses to texts in classrooms. In addition, Wissman and Wiseman (2011) told of two (African American and White) adolescent girls' emotions about traumatic experiences surrounding sexual abuse and divorce, as shared through the genre of written/slam poetry and digital poems. The authors explained, “Through poetry [the girls] were able to seek what we have termed “narrative control,” a way of using language to claim the right to name their own experience and to shape their own understanding of traumatic situations and experiences” (Wissman & Wiseman, 2011, p. 243). As a result, the girls pursued critical literacy practices within a classroom that purposely acknowledged and allowed stories about family experiences. Those literacy practices helped elicit further opportunities for private stories to enter into a public space for “responsible and responsive witnessing” (Wissman & Wiseman, 2011, p. 243).
Research about how trauma weaves itself into familial life suggests the importance of literacy. Literacy is often the process by which individuals communicate about their trauma through written, spoken, and visual representations. Thus, literacy research needs to investigate the role of trauma in order to illustrate how stories of this magnitude surface and may influence other cultural institutions. In particular, digital literacies might be symbiotically related to trauma narratives because they create spaces where participants feel safe to relate their inner feelings (Faigley, 1992). Furthermore, Turkle's (1984) work highlights the psychoanalytic side of our creation of a “second self” when we engage in technological tools. She argues that something happens to us both socially and psychologically when we come in contact with computers. Interacting with computers, for instance, “calls up strong feelings” that affect how we think and act (Turkle, 1984, p. 19); thus, her work demonstrates how our personal stories and affinities can be linked to our feelings about technology. Both the research concerning trauma's impact on families' lives as well as that on individuals who engage in digital literacy practices suggest that studying the role of trauma in literacy research is significant and necessary in order to understand how stories of this magnitude surface in participants' homes, and how this may subsequently influence other cultural institutions.
Cultural Trauma and African Americans
When reporting on an African American mother's traumatic experiences and her connection to digital literacy practices, it is imperative to also highlight some of the social and psychological ramifications of trauma concerning this underrepresented population. According to Intersectionality Theory (also known as a feminist theory), studies show how women undergo issues of oppression, racism, gender, and class, all of which contribute to the inequalities that they face among social groups (Crenshaw, 1989). While I hone in on cultural trauma among African Americans, I also acknowledge that this theory plays a role in how marginalized and silenced groups of individuals are nested in oppressed and discriminatory systems. I believe that the examples used in this section offer specific analyses of how women of color like Larnee have been treated, identified, and situated within power and historical contexts.
As a whole, examining cultural trauma (Alexander, Eyerman, Giesen, Smelser, & Sztompka, 2004) and African Americans leads us to examine how cultural trauma occurs “when members of a collectivity feel they have been subjected to a horrendous event that leaves indelible marks upon group consciousness, marking their memories forever, and changing their identity in fundamental and irreversible ways” (p. 1). Eyerman (2001) argues that slavery, for instance, became a “collective memory, a form of remembrance that grounded the identity formation of a people” (p. 1).
In addition, Day (2011) explores how cultural trauma among African Americans is linked to Toni Morrison's novels The Bluest Eye (1970) and Beloved (1987). Issues of slavery, social status, and identity were key components in how African Americans were perceived, and helped them shape a sense of themselves. Books like The Bluest Eye deal with sexual assault by the protagonist's father and her search for a second identity to satisfy her need for acceptance and community. Beloved, on the other hand, describes issues such as motherhood, identity, sexuality, the categorization of slaves, and the denial of access in society. The female characters' traumatic experiences and struggles for identity formation helped them gain acceptance in the societies in which they lived.
Literary works have reinforced the need and space for telling/sharing traumatic narratives as a means for redemptive power, self-agency, and autonomy for African American families and women. For example, Tweedy (2011) examines traumatic narratives of autobiographies about African American women and womanhood through the lens of two writers, Harriet Jacobs and Elizabeth Keckley. Literature such as Incidents in the Life of a Slave Girl (Jacobs, 1861) and Behind the Scenes (Keckley, 1868) redefined and re-identified these women's struggles and traumatic experiences of slavery and sexual abuse, and offered a new and agentic view of black womanhood. As Tweedy (2011) argues, “Their [Jacobs' and Keckley's] traumatic narratives serve as intersections of personal experiences and sociopolitical desires. What the audience witnesses are not scenes of victimization but, rather, moments of psychological mastery over personal trauma and heroic resistance to exploitation” (p. 21).
This literature reinforces how T.M.I. is warranted in Larnee's traumatic experiences and the narratives that are transferred to the researcher. As a researcher, I began my study ready to learn about digital literacies and felt a little wary of “T.M.I.” However, as the study continued, I realized that cultural trauma is intertwined with my key participant's digital literacy experiences. This article describes T.M.I. and how it is connected to ethical issues and concerns regarding research participants.
In the sections below, I discuss the ways in which Larnee's digital literacy practices are connected to her traumatic past experiences. I examine the consent process, share my methodological challenges as a vulnerable observer, and acknowledge the risks and benefits of how Larnee made sense of her traumatic experiences and digital literacy practices in her own words. I also share throughout how this concept of T.M.I. is warranted in her stories, from both the researcher's vantage point, as well as from the research community.
The Researched, The Researcher, The Methods
I chose Larnee's family to participate in a study about their digital literacy practices in the home. As a researcher interested in family digital literacies, I was a reading specialist at an after-school program attended by three of Larnee's four sons. They were actively involved in my reading classes from 2006-2008, and I witnessed Larnee's nine-year-old, son Gerard engage in discussions with his friend about comic book writing and reading and other literacy practices, which sparked my curiosity about his digital literacy practices. Larnee later explained to me that he created a digital comic strip at home. However, I did not know that Larnee herself engaged in digital literacy practices on a daily basis. Once I began collecting data, which I collected both formally and informally from July 2007 to July 2008, I built a rapport and engaged her in my study as a participant, while she in turn revealed the reasoning behind her affinity with these digital tools.
Data Sources
The study was approved by my institution's review board and I obtained informed consent forms from Larnee and assent forms from her son Gerard. I collected data using traditional qualitative methods: structured, semi-structured, and unstructured interviews, participant observations, and audio and video recording. I also incorporated digital photo collages to capture Larnee and her son's visual interpretation of what digital literacies looked like in their communities. We also had a “digital walk” (Lewis, 2009): a tour of the digital tools they used and relied on in their home.
Once a week, I conducted interviews with Larnee for 60–90 minutes. I took field notes during (and most times, immediately after) my meetings with Larnee at her house, and we often relied on emailing and texting to obtain responses regarding our meetings. All data collection and observations occurred in Larnee's bedroom, which was the location of the only household computer.
Data Analysis
I analyzed and coded transcripts, field notes, and audio- and videotapes to find descriptive themes and patterns to answer my research questions (Miles & Huberman, 1994). I employed ATLAS.ti, qualitative data analysis and research software, to locate, code, annotate, and analyze data to find complex relations within participant's text, audio, and video data. I read through my transcripts while listening to the audio simultaneously for clarity and correction and developed codes to make sense of the data. In addition, I color-coded the interview transcripts to coincide with the research questions.
Larnee's Story
Larnee experienced a number of traumatic experiences in her life. She was born with the rare skin disease epidermolysis bullosa, and faced unemployment and divorce. Larnee also had to cope with her son's disabilities, and with the memories of being physically and sexually abused as a child. She would, at times, share descriptive and personal traumatic narratives of her childhood—of abuse, forgiveness, and the search for understanding, which was most often conveyed through her tears, silence, and nonverbal gestures. Over time, I intuitively realized that Larnee needed to share her stories without the interruptions, preplanned questions, or expectations of my research. In fact, she needed to talk in those private spaces that were poignant to how she and her sons used digital tools and practices in their home.
The Researched and T.M.I: Informed Consent, Past Experiences, and Digital Literacies
During my interaction with Larnee, she revealed stories of her need and affinity for digital tools. Larnee was in her mid-30s when I met her and we established rapport almost immediately because she was very involved in her son's education at the after-school program where I worked. After I shared my proposed research objectives and design with Larnee, she authorized consent and graciously allowed me to collect observations and data in her bedroom. At the time of the study, she was taking an online course to obtain her G.E.D. As a child, Larnee did not start school like most children but was kept at home by her mother due to her illness. She remembered her mother's harsh conversation that morning on what would have been her first day of school:
From age five until eleven, I was one of the unhappiest children on the planet. I can't believe how lonely I was between those years of my life. It was clear to me that I was not one of my parents' favorites. I remember it like it was yesterday. I was in my room where I spent the majority of my time, my mother was getting ready for work when she entered my room. I felt an angry wind blow into my room and cut through me like a knife. I looked up at my mother in a petrified stare. She said to me “Today is your sister and your brother's first day of school, and I want this house cleaned and dinner cooked before I get home from work.”
Larnee remembered being told that morning to return to her room for the rest of the evening. She explained the psychological and emotional separation she experienced and how she repeatedly asked herself questions such as why she “couldn't go to school” and why she “wasn't able to learn anything” (Lewis, 2009, p. 65). Larnee acquired reading and writing skills by watching educational television programs until her neighbor reported her mother to the authorities for child neglect. Two weeks later, Larnee enrolled in school performing at a 2nd grade developmental level at age 12. She was bullied at school, tormented by relentless stares, called names due to the visible scars of her illness. In the 9th grade, her mother withdrew her from school, which led to her desire to obtain her G.E.D. As she told me these stories, I sat in her bedroom, listening, writing, and recording. She recounted her past neglect and abuse, which all evidenced the unfinished parts of her life. Larnee and I experienced a place of solace where tears flowed, periods of silence emerged, and embarrassed laughter broke out within the four walls.
Larnee often described her desires to belong and feel needed, and she said that, specifically, digital tools fulfilled those desires. She equated her life as being “shaped around digital literacies” (Lewis, 2009, p. 70). In other words, she allowed the digital tools to take over parts of both her internal and external worlds. Larnee confessed how much the tools seemed to take on the role of a family member, as always being there for her especially when her “real” family members had abandoned her. She explained:
Digital literacy has always been there for me. From the time I learned how to talk and comprehend, it has been there to help me learn how to read, kept me company when I was lonely, made me smile when I was sad, kept me alive when I was sick!
Indeed, Larnee's digital tools became her family and were a large part of her identity. She would often engage in literacy practices like sleeping with her cell phone, taking her phone with her to the bathroom, or feeling as if she had to be on the phone in order to connect with others. She shared, “I actually have to get on the phone at night before I go to sleep to feel connected to the world.”
Larnee's engagements with digital tools were integral to both her self-identification and her relationships. She used digital tools to represent parts of herself, her practices, words, and roles (Lewis, 2009, 2010a, 2010b, 2011, 2013, 2014; Lewis Ellison, in press 2014b). As a mother of four sons, Larnee described herself as a computer motherboard (the main circuit board of the computer). She described some of her own characteristics (e.g., as a mother of four sons) as functioning like the main circuit board of a computer. She also personified digital tools, calling her printer a “he” and her cell phones “family members.” Larnee shared stories of engaging in complex digital literacy practices independently as well as with her sons. They created blogs, texted and instant messaged, played video games, engaged in troubleshooting, and assisted in creating digital comic strips which became a daily literacy practice that she cherished.
Table 1 demonstrates how every fiber of Larnee's digital literate life was motivated by her desire to strengthen her relationship with her sons. Everything she did, said, and identified with helped her connect with them. While I found it interesting to observe Larnee's digital literacy practices, I recognized that these tools gave her voice and agency. As a qualitative researcher, my responsibility extended beyond the initial signature on the informed consent forms—I felt responsible for hearing her stories and learning Larnee's digital literacy practices. With this in mind, I became a witness to her personal, T.M.I., traumatic narratives and experiences that not only made me feel like a vulnerable observer, but also challenged my protocol for collecting her traumatic narratives.
Larnee's Practices, Words, and Roles
The Researcher and T.M.I.: Vulnerable Observer Collecting Traumatic Narratives
Talking about a traumatic experience helps organize memories and feelings into a more manageable and understandable psychological “package.” Telling the story, or developing a trauma narrative, is a significant step in the trauma recovery process no matter what array of symptoms is present. (Post Traumatic Stress Disorder Trauma Treatment, 2010-2011)
As I listened to Larnee's many narratives, I realized that my positionality as a researcher became a teachable moment for both her and me. She welcomed me into her space, history, and practices to report on and observe data about her and her sons. Larnee's inception of digital literacy practices originated from a life of traumatic experiences and hidden stories that made her the person she is today. When individuals experience trauma, they naturally develop coping mechanisms to survive (Post Traumatic Stress Disorder Trauma Treatment, 2010-2011). Merriam (2001) reminds us, “Data are not ‘out there’ waiting collection, like so many rubbish bags on the pavement … they have to be noticed by the researcher, and treated as data for the purposes of his or her research” (p. 70). This statement suggests that as a researcher, I have a responsibility to the participant as well as to the field at large to notice the hidden nuances that make data purposeful. “I never thought anyone would be interested in my life. There are things in my life that I have never shared with anyone other than with you and my therapist,” Larnee exclaimed. Shortly after this comment, Larnee shared that her therapist had recently died abruptly. This news situated me, in Larnee's eyes and words, as “her therapist,” one to whom she felt comfortable telling her intimate stories without judgment.
While I was aware that research and therapy differ and the telling/listening of personal stories can blur the boundaries between the researcher/researched, I always remained ethical, in the reporting of and listening to Larnee's stories, even in vulnerable spaces. “Vulnerability doesn't mean that anything personal goes. The exposure of the self who is also a spectator has to take us somewhere we couldn't otherwise get to” (Behar, 1996, p. 14). My composure as researcher was facilitated by my ethical responsibility to abide by IRB and the professional codes of ethics. However, certain ethics or guidelines may not always apply with qualitative researchers. “Researchers should not allow institutional norms or expectations to limit their ethical agency. Rather, researchers should construct themselves as responsible ethical subjects and resist solely extrinsic forms of ethics” (Koro-Ljungberg, Gemignani, Brodeur, & Kmiec, 2007, p. 1077). To seek, protect, and do notable good in honoring ethics sometimes mean we might need to negotiate those same ethics, even when participants share T.M.I.
Larnee and I constantly negotiated boundaries in our researcher/participant relationship. Recognizing the rich content during data collection with Larnee and hearing traumatic stories made me want to discontinue or shift the conversation during her sharing process. I did not want to silence her position, story, or significance during this process, but I wanted to remind her that this conversation was being recorded and that, at any time, she could prohibit any part of her story from appearing in my dissertation, books, articles, and other writing. At all times, she would grant permission, with a nod or reassuring “yes, I know the tape is on,” reminding me that she gave me permission to share her stories with informed consent. Larnee's voice was not being silenced from within, but I still felt hesitant. I did not want her to feel as if I was taking advantage of her and what she brought into this complex relationship, so I tried to hold myself accountable at all costs when she shared delicate details of her experiences. Ashby (2011) addresses how the researched gives voice to their experiences that talk back to the technologies of power that ultimately oppress them. Like Fine (1998), I deeply pondered my role as researcher to determine what and how Larnee's life would be construed and constructed and I sometimes felt conflicted.
Larnee's actions signified that she wanted her stories to be shared and reported, and I realized that participants can often “hijack” a study in which they tell us what they want us to know. I followed Larnee's lead while constantly applying the methodological and ethical issues, questions, and principles of qualitative researchers like Bochner and Ellis (1996), Bruner (2004), Ellis (2007), Glesne (1999), Punch (1998), and Strauss and Corbin (1990). I allowed her to tell her stories, while I listened and took notes. But I wondered how we, as researchers, negotiate our (re)telling of traumatic stories like Larnee's. While I wanted to protect Larnee's vulnerability (Perry, 2011), I also realized that by telling her story, she felt empowered. Whenever I felt discomforted while listening to those traumatic accounts, I comforted myself by remembering that her voice needed to be expressed, not censored, trivialized, or marginalized (DeVault, 1999).
Being an African American woman afforded me the opportunity to gather information and knowledge about Larnee that she shared with me and that she perhaps would not have trusted with a researcher outside her culture. Hearing Larnee's traumatic narratives and her references to digital tools as family members made me feel empathetic towards her victimization through, physical and sexual abuse, her life-threatening disease, and the social and economic constraints that Larnee had to endure. Punch (1998) argues that, “the gender and ethnic solidarity between researcher and researched welds that relationship into one of cooperation and collaboration that represents a personal commitment and also a contribution to the interests of women in general. In this sense the personal is related to the ethical, the moral, and the political standpoint. And you do not rip off your sisters” (p. 169). This scenario of my “relationship” with Larnee illustrates Harris-Perry's (2011) term, “fictive kinship”—ties that relate to how unrelated members of a group share reciprocal social relationships. In this study, Larnee referred to me as her sister, friend, and at times, therapist. As Harris-Perry (2011) notes “this imagined identity maps onto the historical construction of race. Fictive kinship makes the accomplishments of African Americans relevant to unrelated black individuals. There is a sense in which we are all family” (pp. 102–103).
Larnee and I maintained a close relationship throughout the study, and it ultimately became a friendship among women. I openly and privately questioned myself, often using questions similar to those shared by Christman (1988) in her research (e.g., “How is this woman like [not like] me?”) (p. 80). Feminist researchers argue for the use of friendship between women as a notable methodological approach in qualitative research (Bloom, 1997; Christman, 1988). Sassi and Thomas (2012) examined friendship and mentorship as methodological approaches in two qualitative studies. They argued for a close-knit relationship as protégé-participant. Using friendship as method and mentorship as methodology allowed for greater rapport and thorough data analysis in their research.
As a result of our researcher/participant relationship, I know that my presence in Larnee's home affected the nature of her interactions and discourses. Larnee was comfortable expressing the details of her past with me. We both gave each other consent to unlimited phone calls, emails, and texting/IM discussions, and they were not simply about the study but how she could advocate for her and her sons on school-related matters and prepare for job interviews, and also for me to review medical letters about her illness. This intimate nature of collecting data and hearing Larnee's stories were shaped first by a professional and personal reciprocity with Larnee and her sons, and then by the need to choose how to fit this often-marginalized and underrepresented group of individuals in qualitative research. From my vantage point as a researcher, I told Larnee's stories because it substantiated my research questions and was necessary to extend literacy research on these existing and persistent issues. I also made Larnee's stories valid to make other researchers aware of these unprecedented research contexts, and perhaps encourage more intimate spaces for these kinds of stories. However, these methods and stories are not always recognized or welcomed by the research community.
The Reviewer and T.M.I.: Risks and Benefits of Reading Traumatic Stories
In an effort to publish Larnee's stories in peer-reviewed journals, I describe her digital literacy practices and portions of her life as relevant entities to her affinity for digital tools. During a chat room discussion, for example, Larnee explained her struggles and anger at being misunderstood due to her illness, Epidermolysis Bullosa.
I have EB. My mother never understood me as a child with EB. I was beat, kicked, burned, called names, the works and I have never known what it felt like to hear anyone feel so deeply for someone with EB. I hope there are lots of people reading this so that not only can they donate money but so that parents can become aware of the dangers of abusing a child with EB.
This disturbing chat room post described how Larnee's story shifted the complex of her pain to see herself not as a victim but as a survivor and an advocate. She used digital tools to retreat from the pain but also to tell of ways that digital literacies shaped her outlook on life and positioned her as an agentic, powerful authority to rewrite the stories of her past. However, I did not know the intensity of my reporting of Larnee's story nor the risks that would follow until I submitted a manuscript to a peer-reviewed journal in which I stated that Larnee would often at times be bedridden due to her illness, but that she would still allow me to observe her and her sons in order to track the realness of her normal life. Given this information, a reviewer felt that my position in this research was an “invasion of privacy” and said that Larnee's story was “more information” than needed (in other words, “T.M.I.”):
There are several little hints given about Larnee that I felt were almost an invasion of privacy. It's bad enough that we know that data gathering occurred in her bedroom. I could NOT understand why we were told of her past abuse and how digital literacy could be related to abuse. Couldn't you simply say that she kept the computer and TV in her large bedroom and that's why Gerard was there while she watched TV? I felt as if I was being [told] more information than I needed. (capitalization emphasis in original)
I chose to situate this reviewer's response as a call to awareness regarding the potential unrest that may result from the sharing of traumatic narratives, but also to point out the risks and benefits researchers face when choosing to report on participants' personal narratives. The reviewer's comment suggested that I should have silenced and separated Larnee's digital literacies from her lived realities. The comment represents the perception that my study was not justified by the IRB, by my dissertation committee, or to the members of the literacy field who have recognized my work. The reviewer's argument that data only be disclosed on a need to know basis ignored the fact that Larnee's ties to digital literacies became her salvation and hope, which helped her make sense of her traumatic experiences. Instead, her story appeared to be inappropriate for literacy research readers.
Larnee shared stories with me about her digital literacy experiences and did not seem to self-censor. Instead, when she shared stories about her family's digital literacy practices, she became agentic. Larnee's life is one of survival from her stories of defeat, abuse, illness, and economic devastation. Fine (1998) states that “the imperialism of such scholarship [is] evident in terms of whose lives get displayed and whose lives get protected by social science” remains questionable (p. 136). According to Moje and Lewis (2007), agency is a transformation of “selves, identities, activities, relationships, cultural tools and resources and histories, as embedded within relations of power” (p. 18). Through Larnee's stories and experiences with digital literacies, she became an agentic force for her sons. Her stories tell more about what she experienced as an initiator of digital tools, as one who takes digital tools and introduces them into a practice to start a chain reaction (Lewis, 2013). This practice was demonstrated when she initiated the creation of a blog and invited her younger son to participate, when she introduced “think-pair-shared” discussions with her oldest son while reading George Orwell's (1945) Animal Farm, or through her initiation of texting and instant messaging with her middle son.
Qualitative researchers have a responsibility to question how informed consent, vulnerability, and risks and benefits need to be re-examined not as a setback to a study, but as a continuation of our work to establish more ethical research guidelines. The lines between researcher and researched subject are blurrier than current guidelines would have us believe. For instance, Fox (1996), a researcher and a survivor of child sexual abuse, demonstrated how qualitative research extends in both directions. She blended her story, the story of another survivor, and the story of an offender into a three-fold narrative account that “challenge[d] a dominant, realist reading of abuse by providing space for marginal experiences to be expressed” (p. 331). Although stating the harsh truths of their abuses as violent and sickening, she admitted that sharing accounts of her abuse along with her participants gave her the ability to create a neutral view of the facts, thus making her participants' stories salient and useful for child abuse researchers. These, and other details of what happens when participants share T.M.I. about their traumatic narratives, extends beyond the voice of the abused. Instead, this study is situated to inform and make researchers aware of ways that research, with a T.M.I. slant, creates possibilities for participants, researchers, and the research community to embrace fluid research.
Possibilities and Considerations
According to Perry (2011), “Existing ethical guidelines may be inappropriate for the research designs qualitative researchers use and the communities they study, in part because they are based on positivistic, biomedical research paradigms” (p. 909). In this qualitative study, I question certain ethical considerations in order to suggest changes to these guidelines that will facilitate future research similar to my work with Larnee: How should researchers address the concept of T.M.I. in qualitative research? How might we discuss potential vulnerability of researchers in IRB proposals?
Ethical principles and guidelines (U.S. Department of Health, Education, and Welfare, 1979) were created to protect human subjects from potential harm and to advise and supervise research and IRBs. However, personal and relational issues that occur in studies are usually not the focus for institutions (Denzin, 2003). In fact, we need to (re)consider the legal/IRB approach. For instance, there are dimensions of ethics that support the telling of and about intimate others in this and other research (Ellis, 2007; Guillemin & Gillam, 2004). Ellis (2007) shared how ethics in ethnographies occur when researchers develop friendships with participants over time. She lists the three dimensions of ethics as: procedural ethics, ethics in practice, and relational ethics. These dimensions are key to the argument of this article and to the relationships established between Larnee and me. Procedural ethics ensures informed consent, privacy rights, protection rights, and confidentiality by the IRB. Ethics in practice occurs when unexpected ethical nuances arise when collecting data (Goodwin, Pope, Mort, & Smith, 2003). Relational ethics deals with ethics of care (Gilligan, 1982; Noddings, 1984), wherein researchers have the responsibility to act from a level of morality, respecting and valuing the relationships between the researcher and researched. Relational ethics asks, “How should I respond?” rather than “You should do this.” What is significant about Ellis (2007) is how she describes her plight of writing about intimate others, which offers a greater perspective on how we might envision the IRB approach.
However, I felt the need to transform the notion of T.M.I. —to position myself as a voice for Larnee and participants like her who need to share M.N.I. (much needed information) about their traumatic or eccentric stories that assist in the data collection and analytic processes. I consider M.N.I. as a position in which researchers must rethink the appropriateness of what gets told or not told during data collection in research settings that bind us and the experiences we share with others. Much needed information suggests that stories like Larnee's need to be seen, told, and witnessed as significant, relevant, and necessary in order to facilitate liberation, healing, empowerment, and agency. For instance, in her research Dutro (2008) graphically shared the raw, traumatic experience of the loss of her younger brother to a horrific fall on a mountain, after which his skull was crushed by a falling boulder. Fox (1996), Dutro (2008), and Larnee's stories became filters in which pain and trauma must be released in order for healing to take place. When Larnee shared with me that her therapist abruptly died, she was devastated and heartbroken. She expressed the frustration of having to “find another therapist and share the same stories over again,” which made her have to relive her past. Unconsciously, I took on the duties of her therapist; not as a pseudo-medical professional but as a researcher allowing her to testify to her own stories without judgment—sometimes for the sheer pleasure of hearing her say: “Thank you for telling my story.”
Larnee's life experiences situate her as vulnerable because she shared T.M.I. on a M.N.I. basis. Thus, an amendment or modification to IRB forms and protocols could feature the following: (a) Extend the definition of vulnerable population to include: the concept of M.N.I. in qualitative research, participants' traumatic narratives and experiences, and researchers as vulnerable observers; (b) State the explicit characteristics and rationales of participants' and researchers' vulnerabilities and include detailed research designs that adhere to these explanations in IRB protocols; and (c) Explicitly define language that may be potentially problematic in IRBs, such as “invasion of the subject's privacy,” “do no harm,” “risks,” “benefits,” “T.M.I.,” and “M.N.I.”—even when informed consent has been approved throughout the study. According to Tisdale (2003), “We also have to admit (at least to ourselves) the basis of our own ethical convictions because that is what we will use to resolve ethical problems arising during the research. We cannot rely on principles defined by others but must be active in our ethical decisions and must constantly question and define do no harm” (p. 12).
These suggestions for reconceptualization in IRB protocols will bridge the gap between IRBs and researchers by recognizing and embracing widespread commitments to human subjects that underlie T.M.I. and M.N.I. in qualitative research, informed consent as a process, vulnerability, and risks and benefits. Also, these suggestions may encourage qualitative researchers to want to explore more unconventional, agentic, and activist research studies, and invite more participants (like Larnee) who provide freedom, knowledge, and information about their lives and experiences while remaining true to themselves. The benefits of applying these methodological approaches underlying the issue of T.M.I. and M.N.I. should cause us all to question our application of ethics in qualitative research and to ask ourselves how best to move forward as ethical researchers.