Disability and Debility in Appalachia: Articles and Book Chapters

Atlanta-based indie record label Dust-to-Digital has released the complete recorded works of Blind Alfred Reed, one of the largely unsung heroes of the early days of recorded country music, and one of the earliest recorded songwriters in the genre.

Social support generally is considered a valuable asset that may compensate for health service deficiencies among rural populations. Employing a mixed methods approach, we explored how vulnerable rural residents described social support in the context of self-management for multiple chronic conditions. Participants generally felt support was available, though emotional/informational support was perceived as less available than other types of support. Participants did not rely heavily on informal support to help them manage their multiple morbidities, preferring to call on their doctor and their own resources. We discuss implications of these findings for meeting this vulnerable population's self-management needs.

Jean Bergey’s biography of the Reverend Robert and Mrs. Estelle Caldwell Fletcher uses oral history, film, photographs, and family documents to portray the life and work of an Episcopalian preacher from the 1930s to the 1970s. Bergey’s chapter introduces new material on deaf leadership in churches, access to religious services, and on the community’s role in caring for elderly deaf people. Issues of race, class, and gender are interwoven in the story of how the Fletchers served multiple congregations across the South. Bergey’s research on Rev. Fletcher, who lived in Alabama, offers insight into everyday life for white deaf people in the South and, via his work, gives us glimpses into the lives of deaf African Americans.

Deaf history is more complex and ambiguous than previous studies have indicated, and historians' preoccupation with the manual-oral controversy has precluded a full understanding of deaf people's lives. The historical interests and organized efforts of the Pennsylvania Society for the Advancement of the Deaf (PSAD) transcended language issues and focused on balancing the risks and the benefits of deaf self-determination. One hundred years ago, PSAD's leaders concentrated their efforts on philanthropy and lobbying for the general good of deaf Pennsylvanians, while remaining silent on controversies over deaf education. In effect, they accepted oralism and hearing hegemony in education in exchange for deaf autonomy and improvement in other areas of life. If the PSAD's experience is typical of other state organizations, simple historical models that focus on the actions of hearing oppressors obscure the actual creativity, struggles, and sophistication of America's deaf leaders.

This essay explores the experiences and representations of several southern roots musicians with limb loss or limb differences. Through an examination of the lives of the one-armed Carolinian banjoist and busker "Uncle" Frank Rayborn in the 1950s and 1960s, amputee Confederate veterans who performed at early-twentieth century fiddlers' contests, the one-armed "barn dance" radio musician Emory Martin, and the African-American bluesman "Peg Leg" Howell, this essay explores wider issues of patronage, voyeurism, agency in the roots music—particularly old-time, country, and blues—in the twentieth-century US South. In the process, this essay draws attention to the juncture where disability, poverty, gender, and race meet in the South, and calls us to reconsider narratives of embodiment, difference, and spectacle not at the "extremities" of southern culture and history but at their cores.

This article presents an innovative holistic practice application based on evidence from a focus group study on managing diabetes. The purpose of this study addressed the research question: How do persons with type 2 diabetes describe ways of managing the challenge of living with diabetes? A second purpose was to link the findings on ways to manage diabetes to holistic nursing practice through story theory. Nine adults with type 2 diabetes living in rural West Virginia participated in 3 focus groups. Using content analysis, the study findings integrated themes with core qualities, and are as follows: living life as an evolving process is awakening to the present and doing it your way, being on guard is a vigilant ongoing responsibility, attending to bodily experience is awareness of body and facing life stress, and knowing the consequences is awareness of potential problems and taking charge. Merging the study findings with the concepts of story theory led to the development of an innovative practice application for managing diabetes. Managing diabetes in this practice application goes beyond problem-centeredness to a patient-centered approach, offering attention to individual preferences. Since managing diabetes is a major problem in Appalachia, there a need for innovative approaches. This study adds to the body of knowledge on how persons from Appalachia manage diabetes. In addition, it offers a story practice approach for managing diabetes—replacing a problem focus to a more holistic approach to practice leading to more meaningful and fulfilling outcomes.

In this paper I examine the ways in which people with physical and sensory disabilities challenge normative (even ableist) constructions of the body-environment dyad. Drawing on insight from eco-phenomenologists and rural scholars, I analyze autobiographical narratives by people with disabilities to illustrate the complex entanglement between embodiment and emplacement. Collectively, these disability life narratives present a series of reconstructive strategies – what I call retrofit tactics – that address some of the commonplaces regarding normative rural embodiment and that make corrective adjustments to rurality (retrofits) to accommodate a wider range of embodied experiences. In the course of the article, I identify four such retrofit strategies, which include (1) expanding conceptions of rural embodiment beyond normative definitions, (2) underscoring the importance of attentiveness to one’s body-in-nature, (3) emphasizing and embracing the interdependency of bodies (rather than an isolationist paradigm), and (4) highlighting the importance of language and narrative in the place-making process, particularly within rural environments that traditionally privilege mobility. I am especially interested in demonstrating how the category of disability both challenges and sharpens our understanding of what it means to inhabit rural places and to move between rural and urban spaces

The Appalachian region has been identified as an area with health challenges, including higher mortality, reduced health care access, and poor health outcomes. However, the literature is lacking a randomly designed population-based survey that examines health issues in this population over time. The Greater Cincinnati Community Health Survey (CHSS), a random-digit dial telephone survey, included questions about chronic disease prevalence over an eight-year period in twenty-two counties surrounding Cincinnati, Ohio. The CHSS also identified Appalachian adults using a place-based method (respondent or parent born in an Appalachian county). This paper presents the self-reported prevalence of ten chronic conditions in the white Appalachian population in the survey region compared to the non-Appalachian population: asthma, cancer, chronic lung disease, diabetes, heart trouble or angina, high blood pressure, high cholesterol or triglycerides, stroke, severe allergies, and depression. The results show a persistent pattern of Appalachian adults with poorer health than their non-Appalachian counterparts: in 2013 significantly more Appalachians than non-Appalachians reported being told they had high blood pressure, depression, asthma, diabetes, cancer, chronic lung disease, and stroke. By collecting multiple years of data, we can see trends over time. For some conditions, the self-reported disease status of Appalachian adults has improved since 2005, though the improvement was statistically significant only for high cholesterol. For asthma, cancer, chronic lung disease, diabetes, and stroke, Appalachian self-reported disease status has significantly worsened since 2005.

Disability history has embraced the cultural model of Deafness which argues that residential schools fostered a common identity unified around the use of sign language. This article argues that this model was built on examinations of primarily (and exclusively) white institutions, resulting in scholarship that erases the distinct experiences of deaf African Americans. Cross-disability experiences were central to the lives of Black children at the Virginia State School, a residential school for deaf and blind African American youth. Far from a statistical outlier, the majority of Southern states used this cost saving measure to educate blind and deaf African Americans. Though not exclusively utilized for African Americans, the disproportionate use of combined schools reflects a Jim Crow approach to disability designed to reduce state expenditures at the cost of services rendered to the Black community. Relying on previously unused sources of the Virginia State School, including surviving records of administrators and a school bulletin with student contributors, this article explores a community where nearly every aspect of life involved cross-disability relationships. Oral histories with former students add to this narrative, revealing how young people who came to identify as culturally Deaf, communicated with partially blind students through sign language and with fully blind students through spoken English. This approach to deaf and blind education regularized cross-disability interactions among African Americans in Virginia, producing a community at the school defined by their categorization as disabled and Black, more so than by specific disabilities.

Creadick analyzes the relationships between disability, masculinity, race, and Appalachian identity Deliverance. She disscusses how the film and novel equate manliness to White urban colonization, conquering of “nature,” which includes other people. She shows how disability and Appalachian identity are depicted as deeply connected and equated to White boyhood, with the “Banjo Boy”’s nebulous, mystically disabled identity is used to depict him both as some form of purer form of humanity and also as lesser than. She also discusses the ways that the Banjo Boy and “the Man” (the rapist who attacked Bobby) are depicted as the same due to shared Appalachianness and equally written as a monstrous and less-human part of the natural environment, with banjo motif being associated with the Man as well as the Banjo Boy.

Informed by a mothering-disruption framework, our study examines the illness narratives of women cancer survivors living in Southern Central Appalachia. We collected the stories of twenty-nine women cancer survivors from northeast Tennessee and southwest Virginia using a multi-phasic qualitative design. Phase I consisted of women cancer survivors participating in a day-long story circle (n=26). Phase II consisted of women cancer survivors who were unable to attend the story circle; this sample sub-set participated in in-depth interviews (n=3) designed to capture their illness narratives. Participants’ illness narratives revealed the presence of: (1) mothering-disruption whereby cancer adversely impacted the mothering role; and (2) mothering-connection, whereby the cancer experience motivated mother-survivors. Participants’ illness narratives reflected that the role of mother was the preeminent role for mother-survivors and whenever there was oppositional tension between the roles of mother and survivor, the women-survivors seemed to linguistically relocate away from the survivor role and toward the mothering role. As a result, women-survivors seemingly rejected medicalization of their identities by emphasizing their mothering responsibilities, something we term motherizing.

Researchers have long held that fatalism (the belief in a lack of personal power or control over destiny or fate) constitutes a major barrier to participation in positive health behaviors and, subsequently, adversely affects health outcomes. In this article, we present two in-depth, ethnographic studies of rural women's health decisions surrounding cancer treatments to illustrate the complexity and contestability of the long-established fatalism construct. Narrative analyses suggest that for these women, numerous and complex factors—including inadequate access to health services, a legacy of self-reliance, insufficient privacy, combined with a culturally acceptable idiom of fatalism—foster the use of, but not necessarily a rigid conviction in, the notion of fatalism.

This article contributes to the counselor education literature by exploring and synthesizing research from aligned fields of study to provide a contemporary characterization of Appalachia for counselor educators and counselors wishing to increase their cultural knowledge base. The article includes sections on specific aspects of the Appalachian experience, including contemporary trends related to population demographics, the impact of poverty, and the prevalence of mental health and substance use issues. Implications for counselors are discussed and suggestions for culturally competent counseling approaches are presented.

Infant hearing loss has the potential to cause significant communication impairment. Timely diagnosis and intervention is essential to preventing permanent deficits. Many infants from rural regions are delayed in diagnosis and treatment of hearing loss. The purpose of this study is to characterize the barriers in timely infant hearing healthcare for rural families following newborn newborn hearing screening (NHS) testing. Using stratified purposeful sampling, the study design involved semi-structured phone interviews with parents/guardians of children who failed NHS testing in the Appalachian region of Kentucky between 2012 and 2014 to describe their experiences with early hearing detection and intervention program. Thematic qualitative analysis was performed on interview transcripts to identify common recurring themes in content. 40 parents/guardians participated in the study and consisted primarily of mothers. Demographic data revealed limited educational levels of the participants and 70 % had state-funded insurance coverage. Participants reported barriers in timely infant hearing healthcare that included poor communication of hearing screening results, difficulty in obtaining outpatient testing, inconsistencies in healthcare information from primary care providers, lack of local resources, insurance-related healthcare delays, and conflict with family and work responsibilities. Most participants expressed a great desire to obtain timely hearing healthcare for their children and expressed a willingness to use resources such as telemedicine to obtain that care. There are multiple barriers to timely rural infant hearing healthcare Minimizing misinformation and improving access to. care are priorities to prevent delayed diagnosis and treatment of hearing loss.

Engle, a feminist sociologist, interviews over two dozen oral histories with people from Stinking Creek in Knott County, Kentucky as part of her participatory research on agriculture practices and just transition in Eastern Kentucky. This interviews inquire in depth to agricultural patterns. This assemblage of interviews highlights potentials for food relocalization in the area, as well as delving into place identity.
Interviewees notably reflect extensively on chronic illness, debility, health, substance use, care work, and folk medicine as a prominent component of their histories, despite that not being a primary theme of the questions asked, which absolutely uplifts the need for further research into the intersections of (community) agriculture and chronic health.

As much of the world transitions away from coal energy, communities across the globe grapple with the industry’s retirement and legacy. In the United States, this problem is most acute in the Appalachian region, a place that has been systemically disabled by the coal industry in just about every way possible. It has been environmentally damaged, politically, and economically subordinated, socially re-constructed, culturally maligned and mythologized and ultimately, medically compromised. Residents there are much older than the rest of the country, and experience disproportionately high rates of disability, illness, poverty, infant mortality, low life expectancy and addiction. This disablement of Appalachia is often explained by scholars through a combined structural and cultural mechanism forced onto the region to uphold the dominance of a few wealthy, often absentee, land-owning elite. This mechanism requires inequality and is curated through stereotypes that often transform into internalized self-perceptions as a means to shift blame away from the industry and onto Appalachians themselves, cementing regional disablement in psychological abuse. Insights from a combined critical disability justice and environmental humanities framework in the form of an eco-crip theory of critical trauma can be utilized as a useful and applicable lens for detangling how the social construction of Appalachia complicates the ongoing coal transition, and likewise extends understanding of the eco-crip theoretical framework. Utilizing 48 key informant interviews with coal industry workers, elected officials, and community leaders, this study seeks to center the historically wounded nature of three case study communities in the Ohio River Valley experiencing past, present, and future coal facility closures. An eco-crip theory of critical trauma asks us to look beyond “a cure” for these places and towards radical acceptance and inventive solutions that transform despair into causative and creative power. This framing can help confront normative assumptions of worth and productivity and move to assert agency and autonomy in a region that has been so deeply paternalized and constrained by the logic of transnational extractive capitalism.

Disability theory suggests that built environments stigmatize wheelchair users. This article explores how wheelchair users resist stigma by altering possibilities for action, or affordances, in their environments by “fooling” or “tinkering” with things. I focus on wheelchair users in the US region of Appalachia for three reasons. First, academic studies of stigma against either Appalachians or wheelchair users tend to exclude people belonging to both groups. Second, Appalachia's particular forms of tinkering can complement existing work on affordance management by disabled people. Finally, the spatial and technological distance between many Appalachian wheelchair users gives them insight into how rural settings influence the collective manipulation of affordances. Results indicate that Appalachian wheelchair users tinker with affordances in a variety of settings and with many kinds of collaborators. Although not politically motivated in most cases, their actions nonetheless expose intersecting ableism and classism in American built environments.

The Western Pennsylvania Hospital was founded in 1848 with a mission to care for the poor who were ill and the insane of the Pittsburgh area. The hospital created a Department of the Insane, which was later relocated to Kilbuck Township and became known as Dixmont Hospital, while the main medical facility remained in the city of Pittsburgh. The records found here consist primarily of annual reports of these two institutions that shared a common board of managers for many decades but later became independent from each other. Digital reproductions of the reports in this collection are available online.

The Appalachian South is disproportionately affected by HIV/AIDS. Partly due to the negative connotation that this disease carries in religiously conservative areas, HIV-related stigma remains a critical barrier to HIV care in the South. However, spirituality is a well-documented, effective coping mechanism among persons living with HIV/AIDS (PLWH). The purpose of this study was to examine the relationship between HIV-related stigma and spiritual well-being among a sample of PLWH (n = 216) in Appalachian counties of Tennessee and Alabama using the HIV Stigma Scale and the Spiritual Well-being Scale. Overall, disclosure of HIV status was the most highly reported stigma concern. Women reported higher levels of stigma and religious well-being than men. While existential well-being was negatively correlated with stigma, no significant overall correlation was found between religious well-being and stigma. Our findings reveal the importance of defining theology and differentiating between cultural religious conditioning and internalized beliefs.

It is well-documented in research that individuals with dyslexia experience educational, relational and mental health disturbances at a much higher rate than the general population. In studying dyslexia in the context of Appalachia and in the country as a whole, it is hoped that better recommendations can be made regarding best practices that could better serve the needs of students with dyslexia and their families in Appalachia and the rest of the country. Many Appalachian school districts have struggled to find highly qualified teachers. Some school districts will hire a teacher for a position out of convenience rather than competence because the process of finding a qualified teacher can take time and money that the school district can ill afford. Dyslexia in Appalachia presents specific challenges not experienced by the rest of the country. Misunderstandings about dyslexia create barriers among professionals and laypersons alike. With the additional barriers of lack of school and community money/resources, lack of highly-qualified teachers, significant teacher attrition and use of untrained paraprofessionals in instructional roles in Appalachian schools, the outlook for dyslexic children in these communities is concerning. There exist additional barriers in Appalachia related to the appropriate identification and treatment for dyslexia.

Uterine cancer is the nation’s most common gynecologic malignancy but is understudied in the geographically and socioeconomically diverse state of Kentucky (KY). This study assessed the frequency, distribution, and survival of uterine corpus malignancies in KY, and specifically the differences between Appalachia (AP) and non-Appalachia (NAP). This study utilizes SEER and Kentucky Cancer Registries to study uterine corpus malignancy between January 1, 2000 and December 31, 2014. The analysis looks at incidence between diagnoses in AP and NAP. Evaluation criteria includes: tumor histology (Type I, Type II, sarcoma, and mixed uterine malignancy), age, race, smoking status, stage at diagnosis, insurance status, and county of residence at diagnosis.

This ethnographic photo essay raises questions concerning the best way to represent the disabled. Drawing on one author’s experience of stroke and subsequent fieldwork in “stroke country,” this essay argues for a new kind of disability studies ethnography, an ethnography that critically understands disability as social construct while at the same time remains faithful to the stories disabled people tell.

With a particular focus on West Virginia, this study utilizes state-level monthly panel data over 13 years (2010-2022) to examine the determinants of the rates of application of individuals for Social Security Administration disabled worker income payments (SSDI) and the initial recommendations of those applications for approval by the states. Application rates are particularly sensitive to the educational attainment of state populations and approval rates to economic conditions. However, in contrast to media coverage and public perceptions, both the number of applications for SSDI and approval rates have been declining nationally and in West Virginia.

Social identity and its association to culture, place, and health is an important, but understudied, area of research. One social group that illustrates this connection between place and identity is people living in Appalachia. This exploratory mixed-method study investigates the appropriateness of the self-concept of Ohio Appalachian adults with cancer as "Appalachian," the context associated with that identity and its association with community identification, rural identity, Appalachian Regional Commission (ARC) status, demographic data, and clinical trial (CT) enrollment. Forty-nine adults with cancer residing in Appalachia were recruited. Participants were cancer patients who (1) were offered a randomized clinical cancer trial; and (2) lived in or were treated in one of the thirty-two rural Appalachian counties in Ohio. Forty-seven percent of participants identified themselves as Appalachian and were reluctant to self-identify as Appalachian because of negative stereotypes or uncertainty about the term. Furthermore, many participants endorsed their residence within Appalachia but not their own identity. Future studies should utilize a culturally grounded approach and community-based methodology to explore how residents of Appalachian communities define their community and self-identification in order to improve health in the region.

A study exploring facility-related barriers to healthcare participation (the level to which an individual is engaged or involved in their own healthcare activities from simply keeping appointments to following treatment regimens) in persons with disabilities in Appalachia from the perspectives of four stakeholder groups, (1) adults with disabilities, (2) caregivers of persons with disabilities, (3) advocates for persons with disabilities, and (4) providers who treat persons with disabilities. Background: Persons with disabilities potentially face additional barriers to healthcare participation than those without disabilities. Understanding and addressing the barriers to participation could assist in improving healthcare outcomes among the disabled population. Methods: A qualitative study was conducted involving scripted focus groups with four stakeholder groups with expertise/experience in disabilities. The objective was to assess perceptions of impacts of clinical design elements on healthcare participation. Results: Participants identified and characterized six major categories of facility- and nonfacility-related barriers they felt impacted healthcare participation, with priority differences reported between each group. Conclusions: The healthcare facility is perhaps the most visible tool the provider has at his or her disposal to deliver effective healthcare. Understanding the interactions persons with different disabilities have with the physical facility and the messages, both intentional and unintentional, the state of the facility sends can provide useful insights into delivering more effective healthcare to this population.

Long calls for a discussion of environmental in/justice in Appalachia that views disability not just as an “unfortunate by-product of environmental destruction” (83) or as an identity to cure but as a people “situated to provide valuable knowledge in the ‘arts of living on a damaged planet.’” (87) They call to question the idea of a single correct way of being, and uplift the value of crip knowledges to creating queer environmental futures.

Long argues for an understanding of the Black Lung rights movement as a disability rights movement, calls for disability justice in Appalachia, and calls for a reclaiming of disability identity and history in the Appalachian region.

Appalachia has been seen as a disabled region, commonly positioned as needing development or remediation to be brought in line with the rest of the United States. Instead of automatically assuming that this disablement is a bad thing, I interrogate the multiple meanings and potentialities of disability. I draw on the work of disability scholars and activists to discuss the ways that disability can be a transformative site for social justice. Taking a critical disability studies methodology, I track the ways in which Appalachia has been disabled, primarily through histories of environmental extraction and domination by outside forces. Perceptions of Appalachia as a disabled region, along with the lived experiences of disability and impairment, are salient to Appalachia’s past, present, and future. I consider how disability relates to and can inform social movements in Appalachia, including labor, environmental justice, LGBTQ+ organizing, and caregiving. Throughout diverse case studies that challenge the boundaries of what we consider disability, I argue that an understanding of disability is crucial to the question: What would a good future for Appalachia look like? Instead of assuming that this hypothetical good future would include an eradication of disability, I contend that disability offers a valuable source of cultural knowledge and expertise, especially for cross-movement building in times of precarity.

This article introduces disability studies in Appalachia and argues that disability is an undertheorized area in Appalachian studies. To show the overlap and relevance of these two fields, I argue that ideas of disability have been central in the social construction of Appalachia. Associations with disability, whether ascribed to mountaineers or to the entire region, have enabled a mode of intervention characterized by rehabilitation and development, which operate as normalizing strategies. While being mindful of the embodied harm and the challenges of celebrating disability identity in disenfranchised regions, I trace a “cripistemology” of the region from a critical disability studies perspective. In recognizing the histories of disability in Appalachia, I suggest what I term a “speculative present” as a way to consider disability futures outside of the neoliberal demand for progress.

Carol Mason, a humanities scholar in gender and women’s studies, deploys Achille Mbembe’s concept of “necropolitics” to explore how death is managed politically—in popular culture and in real life—in energy sacrifice zones. Mason compares how anxieties about economic change and its resulting threats to masculinity are managed by mass media in the reality television series Buckwild (which focuses on marginalized and precarious youth in the coalfields of southern West Virginia), in the popular series Mad Men (which depicts the vanishing lifestyle of 1950s advertising men), and in Rebecca Scott’s ethnographic study of how people, especially men who do not oppose mountaintop removal coal mining in Appalachia, adapt to living in such deadly zones. Mason’s point, of course, is not to condone depictions of place as dead but rather to prompt a discussion of the ways in which, as she puts it, “we live in the midst of a deadly world we cannot deny.”
[This chapter can lend itself beneficial analyses to the bio/necropolitics of the Appalachian Mountains as well as the people and wildlife who inhabit them. It also opens a conversation around the ways that the ‘crazy hillbilly’ stereotype can lend itself to a necropolitical landscape that sees both Appalchian people and their environments as already living-dead and thus a permissible sacrifice for the extraction of coal and other natural resources.]

Carolyn McCaskill, Ceil Lucas, Robert Bayley, and Joseph Hill look at the broad sweep of the history of African American deaf people from 1820 to 1990. They examine agency through the lens of education. Records of African Americans attending schools for the deaf are sporadic up until after the Civil War. Following that war, seventeen schools opened segregated “Colored Departments,” sometimes on the same campus as the white school, and other times on a different campus. 2 These separate schools lasted long after the 1954 Brown vs. the Board of Education of Topeka decision, the last one closing in Louisiana in 1978. Many of the teachers at these schools were white, and African Americans who wished to teach at these schools could not find teacher-training programs until after World War II.

This article utilizes the concepts of biographical disruption and biographical flow to expand understandings of how a therapeutic engagement with the rural landscape may change over time for individual stroke survivors. In doing so, it explores how the rural landscape can be experienced as both a therapeutic and a non-therapeutic landscape. The paper draws on in-depth interviews with nineteen stroke survivors living in rural areas in the Northern Netherlands. Because of the cognitively and physically disabling changes that can occur as a result of stroke, interviewees’ stories revealed complex and often contradictory experiences of the rural, post-stroke, that varied significantly from their pre-stroke experiences. Our findings demonstrate that the rural holds potential to function as a therapeutic landscape for stroke survivors, especially through its enabling natural and social characteristics. However, the different physical, social, natural, and healthcare aspects of the rural can also disrupt stroke survivors’ individual biographies and their sense of self. The privileging of place in these biographies may provide important insights that can help improve the practice of stroke care. It also leads us to conclude that the concepts of biographical flow and disruption, though useful, need to take into account the influence of the wider (spatial) context. We thus coin the terms bio-geo-graphical flow and bio-geo-graphical disruption, and suggest that these may more accurately reflect the spatio-temporal disruptions and flows experienced by stroke survivors in the post-stroke period.

When artist Patrick Dean died in May of 2021, he left behind sketchbooks, paintings, loose pieces of paper, cardboard, newsprint, a couple of sculptures, and several other things he'd drawn or painted on. After being diagnosed with amyotrophic lateral sclerosis, Dean said that he would draw as long as he was able, and he continued to experiment with different methods. With the help of his family, he learned to use eye-tracking technology. This technology, instrumental in allowing those with limited mobility to communicate, wasn't exactly intended for creating art, but Dean was determined to make it work that way. As his hands slowly stopped being able to create work, his proficiency with eye-tracking software steadily improved.

Emerging infectious diseases continue to threaten human health and healthcare resources across the world, and with the sustained emergence of some like Lyme disease, this trend is only expected to get worse. Even though some research has examined the spread of Lyme disease in different parts of the United States, focusing on its origin, spread, surveillance, and reporting, there has been minimal research on the recent spread of Lyme disease into and within Central and Southern Appalachia. This is an important gap, considering that this region is at the edge of the disease’s expanding incidence and range. Considering this factor and the consequences that this disease may have on the residents of Appalachia who already face an array of underlying problems like chronic conditions, decreased access to health care, and exposure through outdoor work like resource extraction, addressing this gap will be important in understanding the current and future spatial range and impacts of the continued emergence of Lyme disease in Appalachia. This study thus sought to examine the extent of the emergence of Lyme disease in Appalachia between 2000 and 2019 using spatial scan statistic. This type of analysis uses spatiotemporal information to quantify disease emergence and diffusion using retrospective case and location data within a GIS environment; hence it helped quantify the spatial distribution and diffusion of Lyme disease into and within Appalachia and identify additional areas that can be targeted with public health prevention measures. We found five statistically significant clusters of Lyme disease across the contiguous US, indicating that the disease expanded spatially over the study period. Lyme disease has more than tripled across the US, with the number of counties with RR>1 increasing from 130 in 2000 to 453 by 2019. Lyme disease also increased more than eightfold in Appalachia, with spread southwards into and within Appalachia. The number of Appalachian counties with RR>1 increased from 16 in 2000 to 127 in 2019. These findings are important in understanding the current and future spatial range and the impacts of the continued emergence of Lyme disease in Appalachia. With this understanding, we can minimize the misdiagnosis of Lyme disease and inform public health action to reduce public vulnerability

This essay prefaces a special issue of the Journal of Rural Studies (JRS) concerned with a sub-field of inquiry that might be termed the rural geography of disability, addressing multiple dimensions of disability, physical and mental, associated with life in rural localities (as conventionally identified). Drawing on three vignettes where rurality and disability co-mingle, the authors explore both bad and good rurals with respect to disability: meaning properties of rural areas that can generate, exacerbate or stigmatise disability, on the one hand, and qualities of rural environments that may prevent, alleviate or mollify disability, on the other. Through a brief review of papers in JRS where disability has made an appearance, together with references across to relevant studies elsewhere, this essay lays the groundwork for a rural geography of disability as well as serving to introduce the papers that follow in the special issue.

This article examines the roles race, gender, and disability played in the medical sterilization of African American men in Virginia during the opening decade of the twentieth century. Using the experimental work of Dr. Charles Carrington as a window into the negative eugenics movement, it describes how state actors worked to create a barrier between Blackness and white society. Highlighting the cases of Hiram Steele, Frank Baylor and Richard Mills, this article looks closely at how African American men were characterized by medical professionals. Further, it analyzes medical professionals' strategic use of racialized and gendered stereotypes to legitimize their actions. Finally, it places African American men at the forefront of the state's first sterilization program.

Examinations of cultural variations in caregiving experiences and practices tend to focus on racially and ethnically diverse family caregivers. We extended this research by exploring the role of place-based cultural constructs on care decisions of family caregivers for persons living with dementia in rural Appalachia whose experiences and backgrounds dwell outside the lines of dominant culture. Methods Guided by our sociocultural conceptual model of service use and a descriptive qualitative study design, we conducted in-depth interviews with 30 caregivers for persons living with dementia to understand how predisposing and enabling factors influence caregiving decisions, including the use of services to care for persons living with dementia. Results Three predisposing factors reflecting the culture of rural Appalachian counties in Virginia (reasons for becoming a caregiver, previous caregiving experience, and deference to the person living with dementia) shaped decisions about caregiving responsibilities and service use. Three place-based enabling factors (a personal sense of belonging, knowledge of services, and family support for service use) played an important role in facilitating access to services. Discussion Findings revealed subtle variation across caregivers in this study and in comparison, to caregivers’ experiences more generally. We interpret these variations in light of culturally influenced attitudes, family norms, and sources of information about formal services. Place-based cultural experience influenced dementia family caregivers’ behaviors and choices regarding formal service use, suggesting that investigators should pay more attention to cultural influences in future caregiving research.

This paper is an attempt to redress the limited rendering of institutional workers through the narratives of individuals who worked as psychiatric attendants at Southwestern Virginia Mental Health Institute (SWVMHI). Despite a wealth of literature on the history of mental illness and the establishment of asylums, descriptions of the work and lives of psychiatric attendants are rare. In this paper, oral histories among former psychiatric attendants at SWVMHI reveal the dynamics of an overlooked occupational culture that speaks to the perception and management of mental illness in a rural Appalachian community. This offers the dual function of eliciting information about mental illness and stigma in Appalachia, as well as using an Appalachian case study to contribute to the larger dialogue on the history of mental illness, particularly with regard to the roles and experiences of institutional workers.

Nearly three quarters of older adults have multiple morbidities (MM). This study investigated which morbidities older adults prioritize, why, and how they accommodate these conditions, focusing on elders with two or more chronic conditions and low socioeconomic status. Methods. In-depth interviews were conducted with 41 older adults (most being African American women from the southeastern U.S., with two or more chronic illnesses). Results. Many participants reported worrying most about their heart disease, diabetes, and disability/mobility problems, and about their synergistic effects. Many worried that MMs might tip them into a downward spiral. Participants spent the most time and money on arthritis and diabetes. Few received help; when they did, relatives assisted with arthritis/mobility, diabetes, and effects of stroke. Discussion. Enhanced formal care coordination, increased use of technological innovations, and understanding elders' priorities are necessary to improve self-care/management and quality of life.

Approximately three fourths of middle-aged and older adults have at least two simultaneously occurring chronic conditions (“multiple morbidity,” or MM), a trend expected to increase dramatically throughout the world. Rural residents, who tend to have fewer personal and health resources, are more likely to experience MM. To improve our understanding of the ways in which vulnerable, rural residents in the United States experience and manage MM, we interviewed 20 rural Appalachian residents with MM. We identified the following themes: (a) MM has multifaceted challenges and is viewed as more than the sum of its parts; (b) numerous challenges exist to optimal MM self-management, particularly in a rural, under-resourced context; however, (c) participants described strategic methods of managing MM, including prioritizing certain conditions and management strategies and drawing heavily on assistance from informal and formal sources.

Over the past twenty years there has been a deadly resurgence of coal workers’ pneumoconiosis (CWP), commonly known as black lung disease. While increased prevalence of the disease is alarming, these data only capture cases where CWP has been officially recognised. We argue that many more cases of the disease are going unreported. Drawing from contested environmental illness literature, we examine issues surrounding diagnostic uncertainty and medical surveillance. We draw from qualitative data on black lung that includes in‐depth interviews, observation and document analysis. Findings indicate ongoing ambiguity and contestation over diagnosis of the disease, ranging from clinical and legal debates to concerted efforts to limit official recognition. While health screenings are currently available to miners, our results indicate low participation rates based on disincentives for early detection, logistical problems, and economic fears. Miners fear workplace discrimination and retaliation for participation in black lung screening programmes. Implications for public health policy and future research are discussed.

Kinship processes contribute to the experience and interpretation of depression-generating empathy as well as silencing. We explore intersubjective experiences of depression among kin with the aim of understanding how depression can reveal kinship expectations and evolving concepts of distress. In interviews with 28 low-income rural Appalachian women about their depression, participants articulated depression as a social process that neither starts nor ends in themselves. Yet kinship obligations to recognize family members' depression limited women's ability to admit distress, let alone request care. The intersubjective experience of depression among kin can challenge the individual expression of distress.

Kinship processes contribute to the experience and interpretation of depression-generating empathy as well as silencing. We explore intersubjective experiences of depression among kin with the aim of understanding how depression can reveal kinship expectations and evolving concepts of distress. In interviews with 28 low-income rural Appalachian women about their depression, participants articulated depression as a social process that neither starts nor ends in themselves. Yet kinship obligations to recognize family members' depression limited women's ability to admit distress, let alone request care. The intersubjective experience of depression among kin can challenge the individual expression of distress.

Spirko describes the impact of disability stigma on disabled people in Appalachian Tennessee. Being identified as disabled or going on SSDI (Social Security Disability Income) is stigmatized and people are socially pushed to hide their disability in ways that result in suffering and sometimes death.

This article explores neurodiversity, eugenics, and Appalachian identity in the early twentieth-century American South through the lens of the author's family history. It discusses the loss of a relative to long-term institutionalization. The article proposes that the central premise of the ideology and pseudoscience of eugenics—that deviance, disability, and most social ills are hereditary—posed a sufficient threat to families with disabled members to enforce their complicity with ableist practices and social structures in many cases, especially when paired with virtually nonexistent home- and community-based services. It also suggests that insufficient home- and community-based services continue to drive disabled people into institutions against their will to this day.

Tells the personal story of Dr. Nathan Hale, a rural health researcher from East Tennessee who has Long Covid, calls for further research into Long Covid, especially in rural areas, and calls for more rural participants to partake in active studies about Long Covid.

Appalachian servicemembers have historically been overrepresented in combat roles of the military, perhaps associated with Appalachian cultural emphasis on patriotism, experience hunting on rugged terrain, and disadvantaged socioeconomic status. Combat exposure has been linked with higher incidence of PTSD and comorbid PTSD/SUD; however, little is known about Appalachian veterans with PTSD, despite their overrepresentation in combat arms. The current study set out to descriptively examine PTSD among veterans from the central core mountainous region of Appalachia, with particular emphasis on diagnoses of PTSD (without SUD) and PTSD comorbid with SUD. Within comorbid diagnoses, we further examined alcohol use disorder, opioid use disorder, and polysubstance use. Finally, we examined differences in diagnoses by rurality within Appalachia (rural versus urban) as well as gender and race. Results revealed that urban Appalachian veterans were more likely to have comorbid PTSD and SUD diagnoses and engage in polysubstance use, compared to rural Appalachian veterans. White Appalachian veterans were more likely to have PTSD without SUD, whereas Black Appalachian veterans were more likely to have comorbid PTSD/SUD, regardless of rurality. Overall, a higher percentage of women had PTSD without SUD compared to men, whereas a higher percentage of men had comorbid PTSD/SUD compared to women. Among those with comorbid PTSD/SUD, rural women had lower rates of alcohol use disorder only than men; however, men and women living in urban places experienced similar rates of disordered alcohol use. Further, there was no rural-urban difference in rates of opioid use disorder, but White Appalachian veterans had higher rates of disordered opioid use than other races. Given that Appalachian, rural, and military cultures have been linked to reluctance to seek mental healthcare, the findings of the current study may help Appalachian providers better identify the groups of veterans at greatest risk for PTSD and comorbid PTSD/SUD.

This study focuses on the life experiences of a rural, Deaf Appalachian woman, Jane Ann Shelton, a second generation Deaf child born to Deaf parents from the communities of Devil’s Fork (Flag Pond, Tennessee) and Shelton Laurel (Madison County, North Carolina). Over two hours of videotaped interviews were interpreted and transcribed, followed by various other communications to describe the life of a rural, Deaf Appalachian woman without a formal high school degree. As an advocate and a political lobbyist in Tennessee during the 1980s and 90s, she was unparalleled by her peers (deaf or hearing) in her efforts to “enhance the lives of ALL Deaf Tennesseans.” From these interactions and my firsthand knowledge, I crafted stories of her life experiences for the purpose of performing them for both Deaf and hearing audiences. Further studies should be done on rural Deaf Appalachia as precious little oral history has been collected.

To read Ron Rash is to place one’s hand on the scars, wounds, and calluses of the Appalachian region and to immerse oneself in a body of complex, authentic, and traumatic narratives that settle across the peaks and plains of the Appalachian mountains. This article situates Rash’s short stories within the context of the Appalachian landscape and culture, which emerge as both vulnerable and resilient, influenced by extractive industry, cultural exploitation, poverty, and widespread stereotypes. By focusing specifically on characters suffering from trauma, this contribution shows how Rash humanizes the adversities faced by Appalachia and its people through the vulnerable bodies, minds, and lives of these characters. By examining the way the writer makes the Appalachians another traumatized body, we also question the social impact of his stories and the way in which the reader comes to feel empathy for these traumatized bodies: does this empathy constitute a path to the healing of the region? Through the play of changing perceptions, Rash unfolds an authentically human Appalachian narrative, against sentimentality and extreme simplification.

Whittle reflects on the history of sanitoria in Western North Carolina, issues of low income nurses at sanitoria contracting consumption (now known as tuberculosis) from their patients, and the Fred Kahn Asheville Postcard Collection, which includes 108 stamps depicting sanitoria in Asheville and throughout Western North Carolina.

Older sexual and gender minority adults living in rural areas of the U.S. face challenges in accessing welcoming and inclusive formal health, mental health, social, and long-term care services. The intersection of the local rural sociocultural context with lesbian, gay, bisexual, and transgender (LGBT+) identities and aging presents both challenges and opportunities for improving formal services for LGBT+ older adults. Little is known about how the rural south central Appalachian context intersects with the identities of LGBT+ older adults with regard to accessing formal services. This paper presents the results of a qualitative study examining experiences, concerns, and recommendations regarding formal services among 11 LGBT+ older adults residing in rural south central Appalachia. Several of the participants described experiencing discrimination and/or marginalization while accessing formal services. A number of participants were fearful about the lack of LGBT+-inclusive services and expressed that they would consider leaving the area if their own or their partner's health declined or if they or their partner required long-term care services, particularly residential care. Many participants expressed the need for local provider education and training about the needs of LGBT+ older adults. Implications for practice, policy, and research are discussed in this paper.

Existing coal mining health literature has not adequately addressed the health of women and girls who reside (and perform reproductive labor) within the households of male coal miners exposed to coal dust and other coal toxins. This study compares archival data on the health at the time of death for coal miners’ wives and non-coal miners’ wives to determine if there are statistical differences between these groups of women. Findings indicate that there is a statistical difference between these groups of women in age at death, with wives of miners dying 7 years earlier, on average. It also indicates that women providing reproductive labor within a mining household are at a higher risk of particular health conditions—some that have been acknowledged in the existing literature and some that have not. These findings are especially important given the deadly resurgence of black lung in Appalachia.