Autonomy on the horizon: comparing institutional approaches to disability and elder care

Abstract

This article asks how people come to interpret themselves and others as autonomous given their multiple dependencies. We draw on a cross-case comparison of ethnographic studies with two populations for whom autonomy is both central and problematic: elderly patients in post-acute care, and young adults with disabilities in an independent living program. Analyzing the institutional efforts to make their clients “as independent as possible,” we find that staff members at each organization formulate autonomy as a temporal project through an ongoing calibration of open futures, ideal pasts, and situational competence. Constantly adjusting and fine-tuning where in time autonomy “really” is, workers arrange present dependence so that the contours of the future remain open for their clients. In other words, they make use of temporal markers to produce recognizable autonomous subjects whose dependencies are momentary. Theorizing this temporal project enables us to see more clearly how all of us engage in the constant business of “doing” autonomy, and to better understand the role of institutions in producing autonomous selves.

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Notes

  1. 1.

    In this article we remain attentive to the distinction between independence and autonomy, and note when it becomes problematic in our empirical observations, yet we also occasionally use the words interchangeably. At both programs people talked about “independence,” never “autonomy.” However, we identify nuance in the meaning given to independence and argue that autonomy is a larger, multidimensional concept that encompasses practical independence and the rational/moral basis for action.

  2. 2.

    The 1957 President’s Commission on Chronic Illness defined rehabilitation as “the restoration of the handicapped to the fullest physical, mental, social, vocational and economic usefulness of which they are capable.”

  3. 3.

    It should be noted that this reluctance to care is not universal for adults with intellectual disability, but is specific to programs like MTIC that do not provide residential home-health or personal care services and thus don’t need to account for more traditional caregiving tasks like bathing, feeding, medication management, etc.

  4. 4.

    We argue that these impairments (physical and cognitive) are comparable for the sake of our argument, because they constitute the content of disability and areas of intervention at our respectives sites.

  5. 5.

    At Oakville, too, discharge was not always evidence of success. Elderly patients were sometimes discharged because their insurance denied payments, or because they or their families members insisted on signing out against medical advice. These cases in which discharge off of post-acute care was not the desired outcome, however, were much less frequent than discharge as a metric of success.

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Acknowledgements

The authors would like to thank Iddo Tavory, Gil Eyal, Diane Vaughan, and Clayton Childress for their comments on this manuscript and for their support of our research. We also benefitted from comments on early drafts from Columbia’s SKAT Workshop, the 2020 Junior Theorists Symposium, and the NYLON working group hosted by the Institute for Public Knowledge. Isabel Gil Everaert and Sebastián Villamizar, in particular, provided insightful comments on our drafts.

Funding

Munson’s research was funded by a National Science Foundation Dissertation Improvement Grant (award #1802591) as well as a research grant from the Department of Sociology at Columbia University. Altomonte’s research was funded by a dissertation fellowship from the Heilbroner Center for Capitalism Studies at The New School and a dissertation fellowship from the Sociology Department at The New School.

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Study conception, design, and data collection were completed separately for each field site by each author. Both authors contributed equally to the analysis of interpreted data. The manuscript was written simultaneously by both authors who also shared the work of revision and editing. All authors read and approved the final manuscript.

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Correspondence to Adrianna Bagnall Munson.

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Altomonte, G., Munson, A.B. Autonomy on the horizon: comparing institutional approaches to disability and elder care. Theor Soc (2021). https://doi.org/10.1007/s11186-021-09434-4

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Keywords

  • Agency
  • Aging
  • Autonomy
  • Disability
  • Independence
  • Temporality