Can You Hear Me Now? Augmentative Communication, Methodological Empowerment, and the Life Story of Jon Feucht

Abstract

<p>Keywords</p><p>augmentative communication, disability, biography, methodology</p><p>Abstract</p><p>Feminist social research and disability studies converge in arguing for a research methodology undertaken on behalf of and to empower research participants. Our research, an ongoing life history project with Jon Feucht, has been undertaken in this tradition. Throughout much of his life, Jon struggled with a severe speech disability due to cerebral palsy that significantly impaired his ability to communicate verbally with others. After acquiring a sophisticated augmentative communication device, Jon's life changed for the better. In this paper we describe the nature of augmentative communication, share some of Jon's thoughts about augmentative communication and people with disabilities, and explore some of the challenges and opportunities facing researchers collaborating on research projects with individuals who use augmentative communication to speak.</p>

Enabling Crip Time With Digital Tools in Qualitative Inquiry

“…For instance, Abrams and Abes (2021) drew upon principles of Crip theory in a narrative inquiry project by committing to doing research with (not on, or about) Queer and Disabled students in educational contexts. Other scholars have grounded autoethnographic accounts of disability with Crip theory to interrogate the (re)production of ableist systems (Flad et al, 2011).…”

Strategies to Promote the Inclusion of Young Adults With Developmental Disabilities in Community-Based Health Studies

“…This duty is explicitly stated because groups have been inappropriately excluded from participation in research on the basis of attributes such as gender, race, ethnicity, age and disability. (Canadian Institutes of Health Research [CIHR], 2014, p. 50) It is important, however, to recognize the efforts and experiences of researchers who, using mediated modes of communication (Flad et al, 2011;Teachman et al, 2018) and recognizing the inclusion of non-or differently verbal research participants (Ashby, 2011), collaborated or interviewed individuals with disabilities who were previously considered unable to "speak for themselves." Other researchers have also pointed out the relevance of including individuals with expressive language difficulties in qualitative studies "as a means of gaining greater insight into their perspectives and needs and as a form of validation and empowerment" (Lloyd et al, 2006(Lloyd et al, , p. 1399.…”

“…Some argue that research “can be disabling in itself” (Smith-Chandler & Swart, 2014, p. 424), and that individuals with disabilities have experienced it as “alienated research” (Morris, 2001). Particular frameworks such as deficit approaches (Lester & Nusbaum, 2018), aimed at “fixing” individual pathology, may reinforce narratives about disability that enact barriers, oppress and disempower people, and reproduce social stigma (Barton, 2005; Bigby, Frawley, & Ramcharan, 2014a; Dalrymple & Burke, 2006; Flad, Berger, & Feucht, 2011; Lloyd, Gatherer, & Kalsy, 2006; Sakamoto & Pitner, 2005; Teachman, McDonough, Macarthur, & Gibson, 2018).…”

Disability and Life History Research

“…While some have defined this approach rather narrowly, essentially equating it with participatory research in the context of progressive social action for people with disabilities (Zarb, 1992), others suggest that the very act of telling one's story may be empowering in and of itself (Petersen, 2011). My colleagues and I have referred to this approach as methodological empowerment (Berger et al, 2014;Flad, Berger, & Feucht, 2011).…”