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Author ORCID Identifier
https://orcid.org/0000-0003-4908-704X
Date Available
5-1-2028
Year of Publication
2026
Document Type
Doctoral Dissertation
Degree Name
Doctor of Philosophy (PhD)
College
Arts and Sciences
Department/School/Program
Anthropology
Faculty
Erin Koch
Faculty
Christopher Woods
Abstract
In Appalachian Kentucky, a region where life expectancy is almost 10 years shorter than the national average, injury, illness, and disease have become part of daily life, a chronic constellation of conditions that disable and debilitate. While healthcare plays an invaluable role in disability prevention and treatment, disabled people and their families are often left to manage new care needs and daily life post-hospitalization. This ethnographic doctoral dissertation project investigates how cultural, political-economic, and biomedical forces shape experiences of acquired disability via everyday experiences of care for disabled people and their families in Appalachian Kentucky. Attributing disability to so-called “diseases of despair” or a “culture of poverty” assigns blame to Appalachians rather than recognizing the long history of regional neglect and extraction, not only of environmental resources, but also of the bodies and lives of its people.
Rather than rooting disability within despair, I connect disability and disease to the legacy of disrepair evident in structures intended to provide care. Shifting from a frame of despair to disrepair, disability in Appalachia must be understood in the context of political economic policy, the healthcare system, the daily lives of disabled people and their families and communities, as well as the ways care makes survival possible. Drawing on anthropological and feminist approaches to care, disability, and biomedicine, as well as Appalachian studies’ focus on representation, this project’s novel praxiographic approach investigates disability and care as fundamentally relational, co-constituted and enacted through the everyday action and inaction of disabled people, care networks, healthcare, and policy. By focusing on the meanings entailed in material practices, praxiography reveals disjuncture between seemingly hegemonic systems and the values of people engaged in those systems. Through care, people resist ableist conceptions of disability as the end of meaningful life.
To uncover these care practices, this project uses 20 months of ethnographic fieldwork, including participant observation in primary and specialty health care clinics, community health workers and other community organizations, and the homes of disabled people; interviews and concept mapping with disabled people, their family caregivers, and health and human service providers; and photovoice in a residential treatment center. Fieldwork highlights the experiences of disabled people, interdependencies of care, agentive strategies used to mitigate health inequities, and ways to support disabled people long-term.
Care in the face of disrepair is a means to enact hope for a different future, though it may inadvertently allow the very systems that have failed so many in Appalachian Kentucky to prosper. By investigating care and disability as relational and meaning making, this project connects disabled people’s everyday experiences to the state, economy, and biomedicine, and analyzes the production of inequities via systems of power to investigate disability in Appalachia and Appalachia’s construction as disabled. Disentangling individuals from the systems that shape—but do not determine—their lives reveal the agential, rational decision-making and world-building efforts of disabled Appalachians and their families fundamentally “trying to live.” This project has identified areas of improvement for care for disabled people and their families and insufficient healthcare services from the healthcare system and public policy. These insights highlight the creative strategies people have developed in the context of systemic disrepair to mitigate health inequities, as well as the impact of gaps in care on disabled people, their families, and care networks. Ultimately, systemic change is necessary to shift from the strategies for survival to create opportunities for people with disabilities to not merely survive but live well.
Digital Object Identifier (DOI)
https://doi.org/10.13023/etd.2026.155
Archival?
Archival
Funding Information
This project was supported by internal funding from the University of Kentucky Departments of Anthropology (2022-2025) and Behavioral Science (2022-2023), and the University of Kentucky Appalachian Center (2024-2025). From 2024-2026, this project was supported by the Wenner-Gren Foundation Dissertation Fieldwork Grant (Gr. 10721), the National Science Foundation Cultural Anthropology Program - Doctoral Dissertation Research Improvement Grants (BCS 2416195), and the National Institute on Minority Health and Health Disparities (F31MD019997-01). This content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
Recommended Citation
Roberts, Michelle, "“We’re Not Dying, We’re Trying to Live”: Disability and the Work of Care in Appalachian Kentucky" (2026). Theses and Dissertations--Anthropology. 77.
https://uknowledge.uky.edu/anthro_etds/77
Included in
Appalachian Studies Commons, Community Health and Preventive Medicine Commons, Disability Studies Commons, Feminist, Gender, and Sexuality Studies Commons, Health Services Research Commons, Medical Humanities Commons, Other Medicine and Health Sciences Commons, Political Economy Commons, Rehabilitation and Therapy Commons, Rural Health Commons, Social and Cultural Anthropology Commons, Social Justice Commons, Wounds and Injuries Commons
