Narrowed Lives: Meaning, Moral Value, and Profound Intellectual Disability

Vehmas, Simo; Mietola, Reetta

doi:10.16993/bbl

Cited by 24 publications

(28 citation statements)

References 124 publications

(173 reference statements)

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“…Importantly, the assessment is usually made by a social worker only minimally acquainted with the person. Such limited acquaintance may pose as a barrier as studies, including those focused on people with profound and multiple disabilities, have shown that when choices are communicated to them in meaningful ways by people familiar to them, they often have unexpected abilities to make decisions (Vehmas & Mietola, 2021 ). Moreover, studies show that having close relationship and personal knowledge about the person is often necessary to reveal and give meaning to nonverbal forms of communication (Watson et al, 2017 ).…”

Section: Discussionmentioning

confidence: 99%

Between the convention and conventional practice: Israeli social workers' recommendations regarding the legal capacity of people with disabilities

Holler

Werner

2022

Research Intellect Disabil

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Background: Following the convention on the rights of persons with disabilities (CRPD), various countries have recently amended their legal capacity laws with the aim of restricting the use of guardianship and increasing the use of other, less restrictive practices, mainly supported decision making. As social workers have a key role in carrying out these reforms, this study examines how Israeli social workers make legal capacity-related decisions.Method: Semi-structured interviews with 27 Israeli social workers.Results: Thematic analysis identified three factors driving social workers' recommendations regarding guardianship and supported decision-making: the person's diagnosis and functioning level, and the presence of a supportive family. A fourth factor, the person's preferences, played a complex and more limited role.Conclusions: Many changes have yet to be made to fully apply the support paradigm in Israel, since social workers still tend to base their recommendations on factors not fully aligned with the CRPD.

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Section: Discussionmentioning

confidence: 99%

Between the convention and conventional practice: Israeli social workers' recommendations regarding the legal capacity of people with disabilities

Holler

Werner

2022

Research Intellect Disabil

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“…Traditionally, research involving persons with PIMD has emphasized deficits, mostly through the voice of proxies (Nind & Strnadova, 2020). This study aims to ground arguments on lived experiences, valuing the lives of persons with PIMD (Vehmas & Mietola, 2021). Thus, it calls for methods that can include such perspectives, and a qualitative approach (Bryman, 2016) was applied.…”

Section: Methodsmentioning

confidence: 99%

“…Furthermore, it has identified a paucity of knowledge about how to practically go about ensuring the support to enable self-determination (Nicholson et al, 2021). While professionals might endorse the principle of self-determination, knowledge about how to support it is lacking (Vehmas & Mietola, 2021). A model such as the circle of support (Watson, 2012) provides fruitful structures for the related concept of supported decision-making (Watson et al, 2019), but filling the void regarding details in the relationship between the professional and the person with PIMD can inform best practices.…”

mentioning

confidence: 99%

“…Practice, however, shows that persons with profound intellectual and multiple disabilities (PIMD) are in danger of being denied this right (Skarstad, 2018). One reason might be that Western philosophy associates personhood with rationality, thereby devaluing persons with PIMD as being without agency (Vehmas & Mietola, 2021). Similar views have also been revealed in legal systems, leading to the denial of rights to persons with disabilities (Flynn & Arstein-Kerslake, 2014).…”

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confidence: 99%

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Holding and Professional Care: On Self-Determination for Persons With Profound Intellectual and Multiple Disabilities

Skarsaune

Hanisch

2023

Research and Practice for Persons with Severe Disabilities

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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 self-determination 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.

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“…Very often it is not wrong at all,” basing his views on the relative capacities of nonhuman animals (Singer, 1979, p. 191). His position has been forcefully challenged (Carlson, 2010; Kittay & Carlson, 2010; Vehmas & Mietola, 2021) but he persists.…”

Section: Useful Contradictionsmentioning

confidence: 99%

Writing a history of learning disabilities as Joey's dad

Unwin¹

2022

Brit J Learn Disabil

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It is perhaps inevitable that the academic study of learning disabilities is often undertaken by established scholars with little lived experience of the condition. So, what has it been like for someone from outside the academy, with a long career in the arts, who is also the father of a severely learning‐disabled young man, to write a book‐length history of learning disabilities in culture and society? How is it possible to reconcile such a biological reality with the many caveats about the social construction of the condition? How can we retain a belief in scientific analysis when the categorisation of learning‐disabled people seems to have caused as many problems as it solves? Furthermore, how can such an account be attempted when so much of the written record is by people who are placed in positions of power over learning‐disabled people and when the true voice of experience is so often silenced, or, like the author's son, silent? The attempt to answer these questions reveals a field rich with contradiction. Despite some advances, much of the social and cultural history of learning disabilities tells a tale of neglect, abandonment and abuse, with confused cultural attitudes too often shaping practice. When the telescope is reversed, however, severe learning disabilities provide us with a kind of Brechtian “alienation effect” which reveals the fault lines running through so many progressive movements and helps us to frame them historically, while also challenging assumptions about how those with severe learning disabilities are regarded and can best be given the support and freedom that they need.

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Narrowed Lives: Meaning, Moral Value, and Profound Intellectual Disability

Cited by 24 publications

References 124 publications

Between the convention and conventional practice: Israeli social workers' recommendations regarding the legal capacity of people with disabilities

Between the convention and conventional practice: Israeli social workers' recommendations regarding the legal capacity of people with disabilities

Holding and Professional Care: On Self-Determination for Persons With Profound Intellectual and Multiple Disabilities

Writing a history of learning disabilities as Joey's dad

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