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Framing Life as Work: Navigating Dependence and Autonomy in Independent Living

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Abstract

This paper offers an ethnographic account of the context of autonomy for participants at Moving Toward Independence in the Community (MTIC), an independent living program for adults with intellectual and developmental disabilities. In the case at hand, staff interventions are planned around goals, frame that increases temporal distance between the staff and participants by locating the object of action in the future. Similarly, suggestions establish social distance between staff intervention and participant action by placing the responsibility to act on participants. Together, goals and suggestions make up a larger interpretive frame that I call lifework, a method of explaining action that recasts dependence as work toward future autonomy. Lifework is a neoliberal frame that recognizes obligation as a legitimate part of adult life, normalizes the force society exerts on individuals, and interprets this force in daily life as “work.” Other analyses of this neoliberal project highlight the work of institutions to remove people from dependency by changing their habits, practices, and frames of mind. This research often frames neoliberal projects of social control as a coercive force that subverts autonomy. This is not the case at MTIC, where I find that lifework is also an important symbolic mechanism for constructing autonomy. I show that autonomy is best understood as an ongoing and collaborative project to construct social and temporal distance around the individual. This project is both practical, preparing participants for action when they are alone, and ethical, a frame that is necessary for understanding autonomy amidst dependence.

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Notes

  1. All names have been changed to protect the identity of my research participants.

  2. Brendan lives in a community for people with Intellectual and Developmental Disabilities (IDD), which I call Moving Toward Independence in Community (MTIC). The program is a community of 60 members who live in their own apartments in close proximity to one another in a small city in New York state. The program provides supportive services in participants’ homes and the surrounding community. These include training in self-care, housekeeping, employment, self-advocacy, and social skills. Today’s meeting is required by Medicaid to plan and coordinate the services and supports Brendan receives from his parents, job training staff, and MTIC. The Individualized Service Plan that results from this meeting is good for six months and is used as the template for billing Medicaid for the services Brendan receives.

  3. Described elsewhere as supported adulthood (Ferguson and Ferguson 1993; Ferguson and Ferguson 1996).

  4. Personal Outcome Measures are assessed along seven dimensions of the relationship between support and independence: putting people first, building and maintaining positive relationships, demonstrating professionalism, supporting good health, supporting safety, having a home, and being active and productive in society.

  5. During my fieldwork, I participated in a new employee orientation during which we were introduced to OPWDD’s Core Competencies. These observations come from my experience in the training but additional information is available at https://www.workforcetransformation.org/nys-dsp-core-competencies-resources/.

  6. For those who are eligible for Medicaid. Participants who are not eligible for Medicaid pay MTIC for their ComHab at an hourly rate of $35.

  7. OPWDD Administrative Memorandum- #2012-01: Habilitation Plan Requirements https://opwdd.ny.gov/sites/default/files/documents/ADM-2012-01.pdf

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Acknowledgements

I am grateful for input on this paper from Gil Eyal, Debbie Becher, Diane Vaughan, Guillermina Altomonte, and my writing group, Pierre-Christian Fink and Kathleen Griesbach. The SKAT working group in the Department of Sociology at Columbia University also read an early draft of this paper and provided invaluable feedback. Three anonymous reviewers provided thoughtful feedback, which helped me hone the final argument you see here.

Funding

This study 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.

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    Adrianna Bagnall Munson

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As part of an ongoing commitment to increasing the accessibility of my research, I work with a visual artist to create illustrations of my ethnographic research. You can find illustrations to accompany this paper at www.abagnallmunson.com.

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Munson, A.B. Framing Life as Work: Navigating Dependence and Autonomy in Independent Living. Qual Sociol 43, 89–109 (2020). https://doi.org/10.1007/s11133-019-09438-8

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