‘He was a secret’: family narratives and the institutionalization of people with intellectual disabilities

Burghardt, Madeline

doi:10.1080/09687599.2015.1076718

Cited by 6 publications

(11 citation statements)

References 32 publications

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“…Thus, when we involve people in our research, we come up against biopolitical silent narratives. As Madeline Burghardt (2015) describes it, these are “the silent, undisclosed histor[ies] of institutionalization and the unspoken lives of people with intellectual disabilities” (p. 1,081). Keeping this cultural location in mind, we must not take silence as emptiness in our data collection.…”

Section: Silence As Interpretive Relational and Agentivementioning

confidence: 99%

Something is happening: encountering silence in disability research

Jones

Cheuk

2020

QRJ

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PurposeOften, researchers view silence as antagonistic to equity-aimed projects. Because verbal, written, and textually agentive communications are presumed to be the most valid qualitative-research data, moments of silence are under-analyzed. Yet, we argue that silence holds meaning as data and that it is a valid, rich form of communication.Design/methodology/approachThrough this reflective analysis of silence, we invite readers to reconceptualize silence in research from a critical disability-research perspective with emphasis on crip willfulness. We introduce silence as an interpretive, agentive and relational gesture.FindingsWe attend to silence as necessary in all research because it helps researchers excavate able-bodied expectations about communication in qualitative-data-collection practices.Originality/valueWe demonstrate that silences in research can be an interpretive, relational, and agentive gesture that can teach us about taken-for-granted assumptions about research practices. Revisiting our research encounters with this framing of silence informed by critical disability studies allows us to question how traditional social science research methods value some modalities of expression over others. Rather than viewing silence in research as moments when nothing happens, we show that silence indicates something happening and is valid data.

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Section: Silence As Interpretive Relational and Agentivementioning

confidence: 99%

Something is happening: encountering silence in disability research

Jones

Cheuk

2020

QRJ

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“…Other sibling studies point to darker themes: concerns about siblings' health and longevity (Guse and Harvey 2010), and grief and suffering as systems violently fail our families (Rogers 2015). Some siblings are directed not to talk about their disabled brothers or sistersthey carry 'secretive' narratives that may encase stories of institutionalization (Burghardt 2015). All stories have lasting impacts.…”

Section: Storytelling As Disability Activismmentioning

confidence: 99%

“…Researchers point to a need for sibling disability research that does not solely privilege the perspectives of non-disabled siblings and instead includes multiple perspectives (Meltzer and Kramer 2016;Richardson and Jordan 2017). For now, sibling stories are a brand of narrative that includes histories of silence and silencing; 'unspoken lives' that shape us (Burghardt 2015(Burghardt , 1081. Especially when these anecdotes revolve around non-verbal folks, there is a need to think through new forms of composition.…”

Section: Pathologizations Of Sibling Storiesmentioning

confidence: 99%

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That time I punched a boy in the forehead: sibling stories ahead of research

Jones

2019

Disability & Society

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In the past month, I have been building relationships with community members at a prairie-based research site in Canada by telling a story about my own sibling advocacy. Namely, the story about that time I punched a boy in the forehead when I was a kid. I observe that this story helps build trust between me and the families invested in a new research project. This is a current issue because recent research on the utility of sibling stories suggests that these narrative accounts, diverse as they may be, are foundational to knowledge creation about disability. Yet these stories are under threat of pathologization when they are understood through a clinical lens, rather than a critical disability studies lens. I conclude by suggesting that sibling stories ought to be claimed as pivotal to critical understandings of disability experiences. ARTICLE HISTORY

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“…A wide range of issues concerning individual and family life may become veiled in secrecy: issues such as adoption, infertility, incest, abuse, addiction, suicide, physical as well as mental illness and death (e.g., Berger & Paul, 2008;Burghardt, 2015;Imber-Black, 1993). Family secrets are defined as the intentional concealment of information by one or more family members who are affected by it (Berger & Paul, 2008;Merrill & Afifi, 2015).…”

Section: Family Secrecy In the Literature A Systemic Perspective On Fmentioning

confidence: 99%

Family Secrecy in Family Therapy Practice: An Explorative Focus Group Study

Deslypere

Rober

2018

Family Process

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The aim of this focus group study was to explore the experiences of family therapists working with family secrecy. Our study highlights that family secrets present important and compelling challenges for family therapists. Furthermore, our study reveals that there seem to be some basic strategies family therapists use in dealing with these challenges in therapy sessions. One basic strategy is that family therapists try to guard their position of being a trustworthy therapist for each family member by avoiding becoming stuck in family secrecy. Furthermore, therapists explore ways to guide the family toward the disclosure of the secret in order to alleviate the toxicity of the secrecy. This highlights the importance of the systemic model and how influential this perspective is in family therapy practice. Some participants, however, have in addition a second strategy they sometimes use: talking with the family about secrecy without aiming to disclose the secret. In the discussion section of the article we reflect on the possibility that in the strategic choices family therapists make conceptual issues might be involved. Furthermore, we stress the importance of further research.

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‘He was a secret’: family narratives and the institutionalization of people with intellectual disabilities

Cited by 6 publications

References 32 publications

Something is happening: encountering silence in disability research

Something is happening: encountering silence in disability research

That time I punched a boy in the forehead: sibling stories ahead of research

Family Secrecy in Family Therapy Practice: An Explorative Focus Group Study

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