IDEAS home Printed from https://ideas.repec.org/a/bla/gender/v30y2023i6p2155-2174.html
   My bibliography  Save this article

Beyond the institution versus home care dichotomy: Lessons from a feeding‐tube medical home

Author

Listed:
  • Sara Gilbert Loftus

Abstract

Decades of rights‐based advocacy for people with disabilities have transitioned long‐term care in the United States from institutional settings to home‐based care provided by interdependent care networks. This paper argues that policies and practices within these home‐based care systems unintentionally produce and often perpetuate unrecognized structural violence on the recipients of care and the caregivers. Understanding the caregivers' experiences through a case study of a Facebook feeding tube family support group exposes the geographic realities and ableist underpinnings of the home‐based care model that undergird this violence. Further, I illustrate the contradictions of “home is best” ideology by focusing on three interwoven themes: structural dependency on unpaid mother‐experts, spatio‐temporal erasure through decentralization, and invasive surveillance structures. This research attends to how home‐based care, as a practice and a place, reflects broader patriarchal, gendered, and neoliberal concepts of autonomy and individual rights as expressed through policies like “person‐centered” care and the medical home model. While this analysis has theoretical, methodological, and policy implications, more important is the contextualization of family experiences that sometimes impacts life and death.

Suggested Citation

  • Sara Gilbert Loftus, 2023. "Beyond the institution versus home care dichotomy: Lessons from a feeding‐tube medical home," Gender, Work and Organization, Wiley Blackwell, vol. 30(6), pages 2155-2174, November.
    • Handle: RePEc:bla:gender:v:30:y:2023:i:6:p:2155-2174
    DOI: 10.1111/gwao.13058
    as

    Download full text from publisher

    File URL: https://doi.org/10.1111/gwao.13058
    Download Restriction: no
    File URL: https://libkey.io/10.1111/gwao.13058?utm_source=ideas
    LibKey link: if access is restricted and if your library uses this service, LibKey will redirect you to where you can use your library subscription to access this item
    ---><---

    References listed on IDEAS

    as
    1. Anna Lowenhaupt Tsing, 2015. "The Mushroom at the End of the World: On the Possibility of Life in Capitalist Ruins," Economics Books, Princeton University Press, edition 1, number 10581.
    2. Alison Edgley, 2021. "Maternal presenteeism: Theorizing the importance for working mothers of “being there” for their children beyond infancy," Gender, Work and Organization, Wiley Blackwell, vol. 28(3), pages 1023-1039, May.
    Full references (including those not matched with items on IDEAS)

    Most related items

    These are the items that most often cite the same works as this one and are cited by the same works as this one.
    1. Jan van Duppen, 2021. "Book review: The Botanical City," Urban Studies, Urban Studies Journal Limited, vol. 58(8), pages 1746-1750, June.
    2. Meagher, Kate, 2019. "Working in chains: African informal workers and global value chains," LSE Research Online Documents on Economics 91590, London School of Economics and Political Science, LSE Library.
    3. Hervé Charmettant & Yvan Renou, 2021. "Cooperative conversion and communalization: Closely observed interactions between the material and the mental," Annals of Public and Cooperative Economics, Wiley Blackwell, vol. 92(1), pages 55-77, March.
    4. Katherine Farley, 2022. "“We ain't never stolen a plant”: Livelihoods, property, and illegal ginseng harvesting in the Appalachian forest commons," Economic Anthropology, Wiley Blackwell, vol. 9(2), pages 309-321, June.
    5. Megan Horst & Nathan McClintock & Adrien Baysse-Lainé & Ségolène Darly & Flaminia Paddeu & Coline Perrin & Kristin Reynolds & Christophe-Toussaint Soulard, 2021. "Translating land justice through comparison: a US–French dialogue and research agenda," Agriculture and Human Values, Springer;The Agriculture, Food, & Human Values Society (AFHVS), vol. 38(4), pages 865-880, December.
    6. Nieto-Romero, M. & Parra, C. & Bock, B., 2021. "Re-building historical commons: How formal institutions affect participation in community forests in Galicia, Spain," Ecological Economics, Elsevier, vol. 188(C).
    7. repec:sae:envval:v:29:y:2020:i:1:p:47-66 is not listed on IDEAS
    8. Dominic Piacentini, 2021. "Beside the berm: The convenience of roadside picking," Economic Anthropology, Wiley Blackwell, vol. 8(2), pages 208-218, June.
    9. Caroline Faria & Vanessa A Massaro & Jill M Williams, 2020. "Feminist political geographies: Critical reflections, new directions," Environment and Planning C, , vol. 38(7-8), pages 1149-1159, November.
    10. Letizia Bindi & Angelo Belliggiano, 2023. "A Highly Condensed Social Fact: Food Citizenship, Individual Responsibility, and Social Commitment," Sustainability, MDPI, vol. 15(8), pages 1-22, April.
    11. Janet McIntyre‐Mills, 2020. "The COVID‐19 era: No longer business as usual," Systems Research and Behavioral Science, Wiley Blackwell, vol. 37(5), pages 827-838, September.
    12. Rosine Kelz & Henrike Knappe, 2021. "Politics of Time and Mourning in the Anthropocene," Social Sciences, MDPI, vol. 10(10), pages 1-15, September.
    13. The Re‐Arrangements Collective & Fabien Cante & Ajmal Hussain & Timo Makori & Surer Qassim Mohamed & Alana Osbourne & Francesca Pilo’ & Kavita Ramakrishnan & AbdouMaliq Simone & Rike Sitas & Adeem Suh, 2023. "MOVEMENT 2. FORMALIZING ARRANGEMENTS: Re‐signification and the Making of Governable Spaces," International Journal of Urban and Regional Research, Wiley Blackwell, vol. 47(3), pages 471-482, May.
    14. Popan, Cosmin & Anaya-Boig, Esther, 2021. "The intersectional precarity of platform cycle delivery workers," SocArXiv tk6v8, Center for Open Science.
    15. Lisa Alvarado, 2019. "Institutional Change on a Conservationist Frontier: Local Responses to a Grabbing Process in the Name of Environmental Protection," Land, MDPI, vol. 8(12), pages 1-17, November.
    16. Katharine Legun & Karly Ann Burch & Laurens Klerkx, 2023. "Can a robot be an expert? The social meaning of skill and its expression through the prospect of autonomous AgTech," Agriculture and Human Values, Springer;The Agriculture, Food, & Human Values Society (AFHVS), vol. 40(2), pages 501-517, June.
    17. Kirsten Francescone, 2019. "Tracing indium production to the mines of the Cerro Rico de Potosí," Economic Anthropology, Wiley Blackwell, vol. 6(1), pages 110-122, January.
    18. Eriksson Madeleine & Tollefsen Aina, 2018. "The production of the rural landscape and its labour: The development of supply chain capitalism in the Swedish berry industry," Bulletin of Geography. Socio-economic Series, Sciendo, vol. 40(40), pages 69-82, June.
    19. Claudia Matus & Pascale Bussenius & Pablo Herraz & Valentina Riberi & Manuel Prieto, 2021. "Nature Is for Trees, Culture Is for Humans: A Critical Reading of the IPCC Report," Sustainability, MDPI, vol. 13(21), pages 1-9, October.
    20. Kathleen M. Millar, 2024. "Toward an economic anthropology of wisdom," Economic Anthropology, Wiley Blackwell, vol. 11(2), pages 168-176, June.
    21. Brandon Hunter-Pazzara, 2019. "“12th Street is Dead”: Techno-Heritage and Neoliberal Contestation in the Maya Riviera," Social Sciences, MDPI, vol. 8(8), pages 1-17, August.

    More about this item

    Statistics

    Access and download statistics

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:bla:gender:v:30:y:2023:i:6:p:2155-2174. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: Wiley Content Delivery (email available below). General contact details of provider: http://www.blackwellpublishing.com/journal.asp?ref=0968-6673 .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.