In Their Own Voices

Abstract

Individuals with disabilities continue to experience exclusion from mainstream contexts amid stereotypical constructions of disability as an inferior status. To address these inequities, we contend that the ramifications for both theory and praxis in disability research rests heavily on the way in which disability is theorized. In this article, we draw on the findings of a narrative inquiry as a context to frame an alternative theoretical model for disability research at both individual and social levels. We propose the efficacy of an integrated theoretical approach using the vehicle of narrative inquiry to present alternative stories by individuals with disabilities themselves. In alignment with a poststructuralist epistemology, we propose the addition of Lacanian psychoanalysis to address the construct of internalized oppression felt at an individual psychological level. We conclude that the epistemological and ontological lens through which research is conceptualized has the power either to subjugate or to emancipate individual experience.

Rethinking Debates in Narrative Methods: Narrative Orthodoxy and Research Challenges with Children with Intellectual Disability

“…Considering wider narrative debates, it is recognised that the epistemological and ontological perspective through which research is conceptualized has the power either to subjugate or to emancipate the experience of individuals (Smith-Chandler & Swart 2014). Power has been comprehensively theorised within this through such pathways as Foucauldian analyses (Squire et al 2013).…”

“…Power has been comprehensively theorised within this through such pathways as Foucauldian analyses (Squire et al 2013). The power of narrative reassigns children with intellectual disability the power to story their own identity (Smith-Chandler and Swart 2014), as is the case with any individual. This power is also important to prevent the imposition of the able-bodied ideals of others upon their identity (Campbell 2009).…”

“…This was because initially much research on intellectual disability occurred within a dominant positivist orientation that used quantitative measurements. At the same time, children with disability were often not viewed as the experts on their own lives (Caldwell 2014;Flynn 2011;Goodley 1996;Kelly 2005Kelly , 2007Smith-Chandler & Swart 2014;Stalker 2010). Furthermore, children with intellectual disability who could not use speech to articulate their thoughts and feelings were more likely to be omitted from research (Morris 2003;Rabiee, Sloper & Beresford 2005).…”

The right to be Freepeople: Relational voluntary-assisted-advocacy as a psychological and ethical resource for decolonizing intellectual disability

“…If all care is relational, good or bad, and both influence the kinds of persons made during its planning and practice (Tronto, 2010), we must take cognizance of mutually exchanged and internalized subjectivities of whomever we are interacting with. But because care or advocacy is never a simple good-bad binary, we can at a minimum reject gradation among humans, foreground inclusion, emphasize mutually satisfying participation, and interrogate our hand in making enabled or disabled persons during social activism performances (Smith-Chandler & Swart, 2014;Stein & Stein, 2007). Government vows that "Esidimeni" will not be repeated (Phakgadi, 2018), but has not solicited input from PWID on avoiding such future occurrences.…”

“What Can We Learn From First-Person Narratives?” The Case of Nonfatal Suicidal Behavior

“…Autobiographical narratives have the power to reveal “the complexity, ambiguity, and nuances of lived experience” and to advance our understanding of what it is like to be a patient (Richards, 2016, p. 235). Nonetheless, first-person accounts of illness and disease are not without their limitations (Russo, 2016; Smith-Chandler & Swart, 2014; Vindrola-Padros & Johnson, 2014), which prompts questions about what we can learn or claim to know from studying narrative accounts of complex phenomena like suicidal behavior. In this article, we critically consider what can be learnt from first-person narratives, by considering the particular case of suicide research.…”