Holding and professional care: On self-determination for persons with profound and intellectual and multiple disabilities

Persons with profound intellectual and multiple disabilities (PMID) are in danger of not being granted the human right to experience self-determination. Attitudes questioning the relevance of the rights of persons with significant support needs and a lack of guidance on how to practically go about ensuring selfdetermination might explain this. Providing knowledge about this matter, this article contributes through an ethnography highlighting the relationship between persons with PIMD and professionals. The concept of holding another’s identity was found to be a possible, fruitful approach toward self-determination in this context. Descriptions of holding dialogues with an ethics of care suggest specific conditions for moving practices toward self-determination: recognize the role of the professional, emphasize embodied empathy, and enable involvement. The ethnography suggests a broadened understanding of self-determination, pinpointing the importance of sensitivity toward the other’s particularity.publishedVersio

Within moments of becoming—everyday citizenship in nursing homes

This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives License (http://creativecommons.org/licenses/bync-nd/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited, and is not altered, transformed, or built upon in any way.Background: Humans are occupational beings. Our occupational choices depend on the opportunities available to us, and within nursing homes, institutional rules or structures may limit occupational engagement. An everyday citizenship lens acknowledges the importance of people’s rights as citizens as well as engagement in mundane aspects of the everyday, highlighting diverse expressions of agency. Aims/objectives: To show how older residents living with dementia in nursing homes can realize their everyday citizenship. Methods: A phenomenologically inspired ethnographic study was conducted in nursing home units in Norway, exploring everyday citizenship through narrative analysis. Results: Within everyday environments of care, the narratives of May, Janne and Camilla tell stories of spontaneous initiatives towards contribution and responsibilities, highlighting their continuous occupational natures. Conclusion: Becoming can be seen as constitutive of self and identity, through residents’ actions and contributions within the mundane and ordinary of everyday life, as an essential part of everyday citizenship. Significance for practice: A citizenship of becoming presupposes that institutional perceptions of activities being offered ought to be broadened towards supporting residents’ natural desires to do and act within the mundane and ordinary of everyday life.publishedVersio

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

This is an open-access article distributed under the terms of the Creative Commons Attribution 4.0 International License (CC-BY 4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.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.publishedVersio

Registrering som overgrep? : en gjennomgang og diskusjon av debatten om ressursforvaltning og krenkelse i statistikksystemet IPLOS

I 2006 ble det i Norge satt i gang et tiltak for registrering av pleie- og omsorgsbehov; IPLOS. I etterkant av iverksettingen oppsto det protesterer mot registreringen og måten den ble gjennomført på. Artikkelen undersøker hvilke forhold som ble løftet frem som viktige henholdsvis i problemdefineringen av, og i forsvaret for ordningene, og hvilke hensyn det vises til når funksjonshemmede, helsefaglige profesjonsutøvere og myndighetene søker å legitimere sine standpunkter. Det empiriske grunnlaget er ytringer om IPLOS i aviser, fagpresse, nettsteder og i offentlig informasjon. Et hovedmoment til å forstå IPLOS-kontroversen er at det tas manglende hensyn til velferdsforvaltningen som et bredt fundert verdikompromiss.Registration as oppression? A debate about resource management and human rights violations in the production of impairment statistics A new system for the production of impairment statistics was implemented in Norway in 2006. Both disabled individuals and organizations for the disabled protested against the system. This article deals with the question of what was given emphasis when the statistical tool was criticized and subsequently defended, and how disabled people, health professionals and the health authorities legitimated their standpoints. Empirically, the discussion is based on a collection of texts from the debate over the statistical system drawn from newspapers, journals, websites and public information. A main issue in the discussion is how a well-functioning welfare system is founded on a compromise between different systems of justification

A Glass House of Care: Sheltered Employment for Persons with Intellectual Disabilities

Based on data from ethnographic fieldwork in Norway, we explore relationships of care between workers with intellectual disabilities (ID) and staff in the context of sheltered employment. Care relations in a sheltered workshop are analysed using Annemarie Mol’s (2008) ‘logic of care’, which we combine with the concept ‘the logic of the market’. In this context, relations of care enable persons with ID as workers, but tensions between care and market logics influence the operation of the workshop and its workers. We argue that processes of care transform market logics, and at the same time, market logics also transform processes of care. The logics are found to support each other, but the balance between them is fragile. This results in unstable conditions for care in the sheltered workshop

How care holds humanity: the myth of Cura and theories of care

Modern medicine has often struggled to grasp the cultural aspects of interpersonal care. The medical humanities, on the other hand, have struggled to grasp the embodied, intimate character of care. In a recent appeal to the medical humanities, Julia Kristeva et al argue that care can be a point of crossing between these two ’ontological domains’. They evoke the myth of Cura, referring to previous utilisations by such diverse thinkers as Heidegger and Kleinman, as well as Kristeva’s previous work. This study adds to these bodies of work by using the original text from Hyginus in much greater detail. Textual analysis, theoretical discussions and autotheoretical work unpack care as (1) a fundamental aspect of the human condition, (2) a holding-together of different domains of knowledge, (3) a withholding from these domains and (4) the site of intimate knowledge that both ’ontological domains’ struggle to grasp

The urge to work: Normative ordering in the narratives of people on long-term sick leave

This study analyses the narratives of people on long-term sick leave due to low back pain. We draw upon the theory of justification – as developed by the French sociologists Luc Boltanski and Laurent Thévenot – to investigate how the informants’ narratives evoke and rely upon three ‘orders of worth’. These are the industrial order concerning being a productive citizen, the domestic order of home and family, and the civic order positioning the citizen in the regulations of the welfare state. In-depth interview interpretations map a strongly normative urge to work. The interviews also demonstrate how this urge in interwoven with social interactions in specific arenas: a troubled home life when not working, ways of keeping in touch with work, and complex negotiations of the possibility of non-work. The different orders of worth do more than point towards their ‘own’ arena: Norms and values of the domestic order, in particular, point toward the need for return to work rather than towards life at home (non-work). We conclude that the narratives deal more with the trouble of sick leave than with the enjoyment of work. Hence, the urge to work is just as much a turn away from non-work

The rehabilitation research matrix: producing knowledge at micro, meso, and macro levels

Purpose: EU policy documents and health scholars point out that in order to understand the complexity of modern health systems, as well as to devise appropriate policy responses, considering micro, meso, and macro levels is indispensable. This article aims to develop an analytical framework for how rehabilitation as an interdisciplinary field can be framed in such a three-level framework. Methods: This is a conceptual paper based on recent contributions to the development of a theory of rehabilitation. The paper applies sociological theory to build an analytical framework for a holistic understanding of rehabilitation. Results: Three groups of agents in the field of rehabilitation are identified: individuals with disabilities, professionals, and governmental authorities. The paper systematizes how these agents are positioned and act at micro, meso, and macro levels. In the intersection between the three levels of society and the three groups of actors, a nine-cell table emerges. In the cells of the table, key examples of important social processes to study in the field of disability and rehabilitation are identified. At the micro level, individuals experience a daily life relevant to rehabilitation, professionals ask what works in therapy, and policy authorities promote a strong work ethic. At the meso level, individuals with disabilities act as service user groups, professionals develop organizational designs and the policy authorities ask for cost-effective services. At the macro level, organizations representing people with disabilities lobby, professionals negotiate authorization issues, and the policymaking authorities must identify what can count as just distribution of services. The nine cells of the table are elaborated on by presenting relevant current studies exemplifying each cell. Conclusion: To systematize societal levels and agents involved is to enhance the understanding of rehabilitation as an interdisciplinary field of research

The Rehabilitation Research Matrix. Producing knowledge at micro, meso and macro levels.

Purpose: EU policy documents and health scholars point out that in order to understand the complexity of modern health systems, as well as to devise appropriate policy responses, considering micro, meso, and macro levels is indispensable. This article aims to develop an analytical framework for how rehabilitation as an interdisciplinary field can be framed in such a three-level framework. Methods: This is a conceptual paper based on recent contributions to the development of a theory of rehabilitation. The paper applies sociological theory to build an analytical framework for a holistic understanding of rehabilitation. Results: Three groups of agents in the field of rehabilitation are identified: individuals with disabilities, professionals, and governmental authorities. The paper systematizes how these agents are positioned and act at micro, meso, and macro levels. In the intersection between the three levels of society and the three groups of actors, a nine-cell table emerges. In the cells of the table, key examples of important social processes to study in the field of disability and rehabilitation are identified. At the micro level, individuals experience a daily life relevant to rehabilitation, professionals ask what works in therapy, and policy authorities promote a strong work ethic. At the meso level, individuals with disabilities act as service user groups, professionals develop organizational designs and the policy authorities ask for cost-effective services. At the macro level, organizations representing people with disabilities lobby, professionals negotiate authorization issues, and the policymaking authorities must identify what can count as just distribution of services. The nine cells of the table are elaborated on by presenting relevant current studies exemplifying each cell. Conclusion: To systematize societal levels and agents involved is to enhance the understanding of rehabilitation as an interdisciplinary field of research. Implications for rehabilitation Rehabilitation practice and research must relate to different levels of society and identify different social agents. Service users are not only individuals receiving therapy, but also organized agents influencing the organization of rehabilitation services as well as priorities made at the level of policy development. Both the results produced by health professionals doing a clinical trial and political scientists studying rehabilitation policy disputes will improve when placed in a wide frame of knowledge production