Appalachia Revisited

New Perspectives on Place, Tradition, and Progress

William Schumann, Rebecca Adkins Fletcher, William Schumann, Rebecca Adkins Fletcher

• Publisher: The University Press of Kentucky
• Year: 2016
• Print ISBN: 9780813174419, 9780813166971
• eBook ISBN: 9780813166988
• Topic: Social Sciences
• Subtopic: North American History
• Index: Social Sciences

Known for its dramatic beauty and valuable natural resources, Appalachia has undergone significant technological, economic, political, and environmental changes in recent decades. Home to distinctive traditions and a rich cultural heritage, the area is also plagued by poverty, insufficient healthcare and education, drug addiction, and ecological devastation. This complex and controversial region has been examined by generations of scholars, activists, and civil servants—all offering an array of perspectives on Appalachia and its people.

In this innovative volume, editors William Schumann and Rebecca Adkins Fletcher assemble both scholars and nonprofit practitioners to examine how Appalachia is perceived both within and beyond its borders. Together, they investigate the region's transformation and analyze how it is currently approached as a topic of academic inquiry. Arguing that interdisciplinary and comparative place-based studies increasingly matter, the contributors investigate numerous topics, including race and gender, environmental transformation, university-community collaborations, cyber identities, fracking, contemporary activist strategies, and analyze Appalachia in the context of local-to-global change.

A pathbreaking study analyzing continuity and change in the region through a global framework, Appalachia Revisited is essential reading for scholars and students as well as for policymakers, community and charitable organizers, and those involved in community development.

Part 1

Race, Ethnicity, and Gender

1

Revisiting Appalachia, Revisiting Self

Kathryn L. Duvall, Kelly A. Dorgan, and Sadie P. Hutson

From September 2008 through April 2009 we collected stories from women cancer survivors living in southern central Appalachia with the goals of better understanding the intricacies of their lived experiences, and subsequently of appreciating the complexities of our exploration of their experiences. Through a reflexive analysis we confronted, documented, and adjusted to the complexities of investigating cancer in a unique population, including engaging in place-making practices about the region and ourselves as researchers. In this self-reflective piece we explore how this project challenged us individually and as a team, requiring us to revisit Appalachia and revisit self.

This chapter examines methods of reflexive health-care research—that is, qualitative methods—in order to address the embedded role of researchers in the social context(s) of research, specifically the context of working with cancer survivors in East Tennessee and southwest Virginia. Long the norm in social scientific exploration, quantitative-based research methods support the researcher’s identity as primarily a data-collecting machine: detached and objective.¹ However, the nature of qualitative research emphasizes the subjective position of researchers as instruments. Qualitative approaches attempt “to understand the meaning or nature of experience of persons with problems” by asking the why and how of the process in addition to the what, where, and when.² Conversational and observational encounters with participants allow for the exploration of phenomena about which little is known and can be used to obtain intricate details often lost through more objective research methods. We, like many other scholars, believe reflexivity improves the quality of research because we view subjectivity as an opportunity to enhance data; however, not all qualitative research methods or researchers use reflexivity in data collection, citing concerns of self-indulgence or solipsism.³ Reflexivity examines the close encounters with personal stories that compel the researcher to revisit the self.⁴ For example, reflexive practices help researchers anticipate, understand, and even embrace the connection among research subject, participants, and themselves; moreover, embracing the connectedness of the research experience potentially impacts researchers in profound ways.⁵ It is this very connectedness that contributes to place-making, as the association between researcher and subject serves to help define place in relation to experience. The following layered personal narrative tells an undertold story: that of the researcher’s experiences.

Each of us brought unique perspectives to our study of women cancer survivors living in Appalachia. For example, Kathryn, a self-identified Appalachian, was a graduate student in communication at the time of this project. This study united her research interests with her extensive experience working with regional populations from disadvantaged backgrounds. Kelly, then a department of communication faculty member specializing in the intersection of gender, culture, and communication, also identified as Appalachian. Sadie, a women’s health nurse practitioner and a college of nursing faculty member, worked in an outpatient cancer center. In this essay, we describe our research process and our reflexive practices, thereby enabling us to better engage the stories of both study participants and researchers. In doing so, we revisit some assumptions about Appalachia and self.

Revisiting Appalachia: Methods and Mindfulness

We focused our research in Appalachia for a number of reasons. First, we all lived here and were connected to the area and the people. Second, because of our educational and research background as well as Sadie’s clinical experiences, we recognized Appalachia as a unique population, particularly in matters of health and illness.⁶ In this way Appalachia is constructed as a place through the definition of the region’s health conditions; troublingly, the population of Appalachia continues to be characterized by numerous health disparities, including cancer.⁷ Before undertaking our study, we fully immersed ourselves in the academic literature, attempting to identify factors contributing to the region’s documented health and cancer disparities, including population-based causes such as lack of insurance and shortages of health-care providers.⁸ Moreover, we noted that several scholars explored how cultural factors may play a role in health and illness in contemporary Appalachia.⁹ Armed with this knowledge, we chose a methodological approach that emphasized participants’ voices, which enabled us to capture rich and diverse stories of women surviving cancer survivorship in Appalachia.¹⁰

Considering Our Approach

Our reflexive analysis, undertaken over the whole course of the study, began the moment we conceived of this survivorship project. Our first step was to conduct a bracketing interview of a self-identified breast cancer survivor and fifth-generation Appalachian, thereby raising our understanding of cancer survivorship and addressing biases and assumptions we had about the topic and the population.¹¹

Through story circles and in-depth interviews, we collected stories from twenty-nine women cancer survivors living in southern central Appalachia—East Tennessee or southwest Virginia—from September 2008 through April 2009. All participants identified themselves as being situated somewhere along the cancer continuum. As noted in our other works describing the study, the story circle approach yielded twenty-six participants.¹² On the day of the story circle event, we began with a keynote speaker who was an oncology nurse and breast cancer survivor; afterward the participants shared stories of their cancer experiences in two sessions, one in the morning and one in the afternoon.

Our reflexive approach inspired us to reconsider our methods when we realized that three of the women we had recruited for the study, who had explicitly indicated an eagerness to talk about their cancer experiences, were prevented from attending the event because of barriers (work, treatment-related side effects, transportation). To broaden the depth of our survivorship data, we needed to include the stories of those whose voices had not yet been heard.¹³ Therefore, Kathryn conducted three in-depth interviews in participants’ homes.

Confidence and Credibility: Researcher-Focused Challenges

We engaged in reflexive analysis through study design and data collection to confront legitimate questions about our credibility as researchers and our place within this research. In the planning stages, we spoke openly to each other about our shared concerns regarding our credibility in our own eyes as well as in the eyes of the participants. One obvious threat to our credibility stood out: none of us were cancer survivors. We could gather literature about cancer in Appalachia and draw on our experiences of living in Appalachia, but ultimately we lacked personal, experiential knowledge of cancer. Each of us, however, had experience with cancer: through a family member, work relationships, or both. Kelly’s story reflects the struggles we faced throughout the project:

I knew what it was to be a family member of a survivor, to be placed on “hold” by a disease but have no say in how it was treated or how it would turn out. But I had no idea what it was to be diagnosed, to call loved ones and break the news. I had no idea what it was to try to decide where to put my energies when depleted by chemo. During recruitment, there was one time in particular that I felt like such a fool. I called a woman who had communicated through an oncology nurse her interest in telling her story to us. I explained that the story circle event was going to be like a “retreat,” a time to eat good food and share stories with other survivors. She interrupted me and explained she was in treatment and couldn’t be too far from her bedpan. I assured her that she would have access to bathrooms nearby—at least nearby from my perspective. But my assurances only forced her to explain in greater detail why rushing to a public restroom wasn’t an option. My ignorance of the daily lived experiences of cancer survivors had resulted in me pressing a woman who was already pressed by her disease and the treatments. I thanked her as politely as I could and hung up. What I really wanted to do was apologize profusely for being so ignorant about what surviving cancer survivorship actually entailed.

In addition to wrestling with the issue of credibility, we also recognized and reflected on the complexity of our intersecting identities. We were not just researchers but also women, mothers, nurses, students, children, and so on. We were unable to listen to participants’ stories impassively and with detachment: their stories evoked questions about our identities and even self-doubt. Sadie, for example, questioned her credibility because of her identity as a healthy mother and a nurse clinician:

I worked in oncology for over ten years, and my mother died from breast cancer when I was thirteen. I knew cancer. I also knew many of the participants because they were my patients or relatives of my patients. I listened so intensely to the women talk about their survivorship journeys that I often forgot I was supposed to be facilitating the group. Then, two things hit me at once: I was only weeks away from having my second child, safe in the fact that I could care for my children without the fear of cancer tearing us apart. Second, the nurse in me became horrified. Participants who were my patients talked about their families and changes in role identity, a topic I had never asked them about. Had I forgotten the importance of holism in my care? How could I have overlooked asking them about these critically important parts of their lives as I focused on their clinical care? Why was I learning this side of the story only now, when I should have known it all along? Had I failed them?

In the discipline of nursing, holistic care is part of professional identity. Although much of the education of advanced practice nurses (APNs) draws from a practical medical model of diagnosis and treatment, the philosophical notion of “patient-centered care” is central to how APNs function. As her story shows, Sadie was challenged to consider whether she truly understood her patients’ life situations within their families and communities; in essence, she had to confront whether she had ultimately strayed from the philosophical stance of being a professional nurse.

Kelly also questioned her credibility during the story circles, and she too experienced intersecting identities. Her father had been diagnosed with bladder cancer when she was a young adult, and then years later her father-in-law died of esophageal cancer. Kelly describes her experience facilitating the story circles:

As I walked into the story circle, I fretted: who was I to have a daylong conversation with this group of cancer survivors? I stepped into the room that day, surrounded by a diverse group of complex women, and I knew—just knew—that they would demand of me: “Who are you to ask me for my survivorship story?” They never did ask me that question. In fact, they were kind, generous, and brave in their display of emotions. Still, my doubts linger, resurfacing each time I write or talk about this research. Who am I to help convey the voices of survivors?

During the story circle event, in an attempt to connect with the women and explore gender differences in the cancer survivorship experience, Kelly briefly told the story of her father-in-law’s cancer diagnosis. There was a catch in her throat and tears in her eyes. Participants passed tissues and began consoling her. Kelly quickly refocused, turning the conversation back to the participants. Later, during the team’s reflexive analysis, Kelly questioned whether her disclosure was appropriate, as researchers are “not supposed” to impact the data; however, we all agreed that this is part of the process of place-making in research. We recognized that our connectedness to the research experience impacts us in profound ways, and this connectedness contributes to place-making. Together with our participants we were defining place in relation to experience. Kelly’s and Sadie’s stories highlight the complexities and challenges researchers experience when conducting research. How do we refrain from becoming emotionally or egotistically involved in the research process?

Painful Encounters, Painful Maneuverings: Participant-Focused Challenges

A downside to conducting research with a population battling chronic illness is health decline and potential death of the participants. During data collection, the participants appeared to experience good mental and physical health. Although these women had battled or were still battling cancer, they appeared healthy, even if that meant lots of makeup and wigs; however, participants reminded us that for older generations in Appalachia, “it’s not how it is, but what it looks like.” It was easy for us to envision healthy and happy futures for these women, especially with the emphasis on positive-only thinking when it comes to illness, particularly cancer, and appearing healthy.¹⁴

Our first report of ...

Table of contents

• Cover
• Half title
• Title
• Copyright
• Contents
• Introduction: Place and Place-Making in Appalachia
• Part 1. Race, Ethnicity, and Gender
• Part 2. Language, Rhetoric, and Literacy
• Part 3. Economy and Environment
• Part 4. Engagement
• (Re)introduction: The Global Neighborhoods of Appalachian Studies
• Appendix: Teaching Exercises
• List of Contributors
• Index