The purpose of this article is to illuminate our troubles with, and troubling of, the trustworthiness dimension of balancing subjectivity and reflexivity, in qualitative research. This article evolved from debriefing sessions between three novice researchers working on a qualitative research study aimed at building understandings of the relational dynamics between adults with developmental disability diagnoses (ADevD) and their caregiving families. Following data collection, coauthors discussed interview experiences they had personally found challenging. These experiences constitute a point of departure for our examination of our researcher positions. We present a delineation of three research tensions, in the form of short "reflexive vignettes," each rooted in concern with possibly contradicting our goals of facilitating and expanding participant autonomy. We follow with recommendations about how, as researchers, our endeavor to understand participants with less conventional communication can be used to reflect and inform navigating difficulties universal to qualitative research.
Our purpose is to illuminate compliances with, and resistances to, what we are calling "compulsory fluency" which we define as conventions for what constitutes competent speech. We achieve our purpose through a study of day-to-day communication between a woman with less conventional speech and her support providing family members and friends. Drawing from McRuer's (2006) compulsory ablebodiedness and Kafer's (2013) compulsory able-mindedness, we use "compulsory fluency" to refer to a form of articulation that is standardized and idealized and imposed on all speakers including those whose speech is less conventional. We see compulsory fluency as central to North American conceptions of personhood which are tied to individual ability to speak for one's self (Brueggemann, 2005). In this paper, we trace some North American principles for linguistic competence to outline widely held ideals of receptive and expressive language use, namely, conventions for how language should be understood and expressed. Using Critical Disability Studies (Goodley, 2013; McRuer, 2006) together with a feminist framework of relational autonomy (Nedelsky, 1989), our goal is to focus on experiences of people with less conventional speech and draw attention to power in communication as it flows in idiosyncratic and intersubjective fashion (Mackenzie & Stoljar, 2000; Westlund, 2009). In other words, we use a critical disability and feminist framing to call attention to less conventional forms of communication competence and, in this process, we challenge assumptions about what constitutes competent speech. As part of a larger qualitative study, we conduct a conversation analysis informed by Rapley and Antaki (1996) to examine day-to-day verbal, vocal and non-verbal communications of a young woman who self identifies as "having autism" - pseudonym Addison - in interaction with her support-providing family members and friends. We illustrate a multitude of Addison's compliances with, and resistances to, compulsory fluency to bring awareness to competence inherent in less conventional speech and we argue this illumination as a call for listening with greater care and more open expectations in efforts to understand, and participate in the expression of, meanings embedded in less conventional speech.
We illuminate third-party research participant consent with, for, and by adults with developmental disabilities by examining consent as an iterative, ongoing process. We use an instrumental case study of three adults with developmental disabilities who, together with their third-party consent providing parents, participated in a broader conversation and video analysis study of how family members are part of decision-making by adults with developmental disabilities. Adults with developmental disabilities comprising our case demonstrated discomfort that left us with questions about the relational nature of third-party consent. We performed a directed content analysis of transcripts and video data corresponding to moments of discomfort, resulting in categories of one- distress, two- non-disclosure, and three- evasion. Our findings illustrate ambiguities where consent was at stake and where there appeared to be no ultimate “Yes” or “No” interpretation. We conclude that expressions of resistance to research participation by adults with developmental disabilities displayed in our data were assertions of autonomy that occurred in relation, yet ran counter to, the agendas of researchers and third-party consent providing parents. We offer recommendations for researchers in the developmental disability field and for qualitative researchers more broadly who might encounter similar ambiguities amidst the relational workings of consent. Greater analytic attention to the relational dynamics of consent has potential to expand ethical commitments of qualitative researchers beyond the limited range of meanings offered in ethics board approvals and signed consent forms.
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