Self-Determination: What can we Learn from Persons with Profound Intellectual and Multiple Disabilities?

Synne Nese Skarsaune; Halvor Hanisch; Anita Gjermestad

doi:10.16993/sjdr.830

Self-Determination: What can we Learn from Persons with Profound Intellectual and Multiple Disabilities?

Scandinavian Journal of Disability Research

Volume 23 (2021): Issue 1

By: Synne Nese Skarsaune , Halvor Hanisch and Anita Gjermestad

Open Access

|Nov 2021

Abstract

Self-determination is often equated with independence and individual choices, which limits its relevance for persons with profound intellectual and multiple disabilities (PIMD) due to their dependency. This paper challenges the notion of independence by arguing for a rethinking of self-determination that is sensitive to lives characterised by dependency and non-verbal being. An ethnographic study informed by phenomenology emphasising embodiment shed light on how self-determination can unfold in the lives of persons with PIMD in relationships with professionals. These data are engaged in a theoretical discussion, dialoguing with theories of self-determination and ethics of care. We advocate that a rethinking involving embodied communication, partnership and ongoing processes of being understood can offer a sound way of grasping the phenomenon of self-determination, both for persons with and without PIMD.

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Articles in this issue

DOI: https://doi.org/10.16993/sjdr.830 | Journal eISSN: 1745-3011

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Language: English

Page range: 317 - 327

Submitted on: Apr 28, 2021

Accepted on: Oct 11, 2021

Published on: Nov 1, 2021

Published by: Stockholm University Press

In partnership with: Paradigm Publishing Services

Keywords:

persons with profound intellectual and multiple disabilities,

© 2021 Synne Nese Skarsaune, Halvor Hanisch, Anita Gjermestad, published by Stockholm University Press
This work is licensed under the Creative Commons Attribution 4.0 License.

Volume 23 (2021): Issue 1