The Agony of Phillip Becker: Parental Autonomy Versus the Best Interests of the Child

Herr, Stanely S.

doi:10.1007/978-3-642-82574-3_30

Cited by 2 publications

(2 citation statements)

References 3 publications

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“…Perhaps the most heart-wrenching dilemmas are those experienced by parents who have wrestled with life-or-death decisions for their children. On one hand are parents who have fought for the life of a child, such as the adoptive family of Philip Becker whose Down syndrome was seen by his biological parents as a reason to refuse lifesaving treatment (Herr, 1986). At the other end of the spectrum are dilemmas that arise in attempts to value a life that is marked by a painful and clearly terminal illness, as in Stinson and Stinson's (1979) struggle with medical personnel to attain the relief of death for their infant son, Andrew, who had brittle bone disease and experienced untreatable pain until his death at the age of 6 months.…”

Section: Parent Advocacy For Lives That Mattermentioning

confidence: 99%

Parent Advocacy for Lives That Matter

Harry

Ocasio-Stoutenburg

2021

Research and Practice for Persons with Severe Disabilities

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This article draws parallels between the concept of “Black lives matter” and the efforts of caregivers to advocate for the value of the lives of their children who have disabilities. The authors identify three key concepts that undergird their argument: first, the concept of systemic bias as built in to the hierarchical valuing of different disabilities and the role of this bias in the valuing of parents’ voices; second, the ways in which stigmatized identity markers intersect to intensify bias; and third, the authors propose a broad interpretation of the meaning of parent advocacy in which service providers seek to work as co-advocates rather than as professional advisors. The authors review relevant literature on these themes and also draw on their own experiences as women of color who are parents of children with disabilities. They present their exploration of these topics against the backdrop of the convergence of the COVID-19 pandemic and the Black Lives Matter movement, and call on epistemological assumptions and intersectionality to address the question of whether participants’ perspectives on racism should be considered as “truth.”

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Section: Parent Advocacy For Lives That Mattermentioning

confidence: 99%

Parent Advocacy for Lives That Matter

Harry

Ocasio-Stoutenburg

2021

Research and Practice for Persons with Severe Disabilities

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“…This was evident in my analysis, and was consistent with larger discussions of family-oriented approaches to care . They are also considered at least partially responsible for the development of the ED in the first place, not inconsistent with models of parenting in sociological and psychological discourses Herr, 1986;Rein Lescastereyres, 2015;. Parents are depicted as essential to the entire process, regardless of the way in which they contribute.…”

Section: Chapter 6 Conclusionmentioning

confidence: 96%

"A Disconnect Between What She Wanted To Do And Her Ability To Act Upon It": Complexities Of Agency In Discourses Of Treatment For Youth With Eating Disorders

Krause¹

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This project analyzes the discourses circulating about young people with eating disorders (ED) in popular and legal materials. Through use of discourse analysis through a Foucauldian lens, I have determined major themes in how we make sense of involuntary treatment, in particular. In analyzing cases from the Ontario Consent and Capacity Board (CCB) and newspaper articles from The Globe and Mail, Toronto Star, Ottawa Citizen, Ottawa Sun, and National Post I drew out common narratives and themes. Agency, not surprisingly in the current medico-political context was noted throughout all texts, and was found to be alongside or in opposition to, discourses of protection. I drew out three themes which framed this overarching tension: (1) hospitalization experiences: outcome oriented approaches to treatment; (2) the family unit: a source of harm and care; and (3) the patient as a broken child. Legislative documents and regulatory frameworks were used to provide the backdrop upon which this discourse plays out. Youth with EDs are the bodies upon which these discourses are written, producing them as particular kinds of subjects. My analysis reveals that there remain fundamental tensions in how we understand the young person with an eating disorder and how they should be treated. Any progressive changes to legislation or health care frameworks must address these tensions around youth agency or they will merely reproduce the current issues. DedicationFor my number one fan, my Grandad, Eamon Keeley. I could not have done this without your guidance. Your endless pursuit and acquisition of knowledge, and compassionate nature inspired me, and fueled this project. Thank you for always believing in me, and for your unconditional love and support.iv Acknowledgements This process would have been much different if it were not for the incredible network of outstanding people supporting me through every step. Thank you all for supporting me through this long, tiring, and ultimately gratifying process.

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The Agony of Phillip Becker: Parental Autonomy Versus the Best Interests of the Child

Cited by 2 publications

References 3 publications

Parent Advocacy for Lives That Matter

Parent Advocacy for Lives That Matter

"A Disconnect Between What She Wanted To Do And Her Ability To Act Upon It": Complexities Of Agency In Discourses Of Treatment For Youth With Eating Disorders

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