Narrating Developmental Disability: Researchers, Advocates, and the Creation of an Interview Space in the Context of University-Community Partnerships

Abstract

This paper examines the narration of developmental disability through interviews between participants, researchers, and members of community organizations serving the disabled population, in the context of university-community collaborations. These kinds of collaborations are extremely important for researching vulnerable or hard-to-reach populations, which often face lower levels of physical, mental, and social well-being as a consequence of shame, stigma, or discrimination. Community collaboration can thus be invaluable for reaching members of marginalized populations, who may be difficult to locate or otherwise avoid contact with outsiders, because it provides members of a research team with local knowledge of a population, a means of accessing possible participants, and legitimation for the project. I suggest, however, that although the researcher's externality may initially invite skepticism toward the investigation from participants, it can also benefit them by providing a forum for catharsis. Based on a pilot study I conducted with a community advocacy organization for the disabled, I note that some participants expressed an appreciation for being able to discuss certain emotions and experiences during interviews with an outsider who was not involved as a caseworker. I conclude that the presence of a trusted community advocate and a researcher at an interview affects a participant's narrative by providing a safe space for participants to voice their stories to outsiders.Keywords: University-community collaboration; developmental disability; interviewing; vulnerable populations; insider/outsider Acknowledgements: I would like to acknowledge the help and expertise of Bruce Uditsky (Chief Executive Officer) and Deb McLean with the Alberta Association for Community Living, whose commitment to recording the stories of the developmentally disabled and advocating on their behalf made this project possible. I also thank Dr. Sara Dorow, Associate Professor in the Department of Sociology at the University of Alberta, who assisted me in the design of this project, as well as in my methodological concerns, and with the publication of this paper in general.

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

“…The lack of participation of certain vulnerable populations in research has been attributed not only to ineffective recruitment strategies but also to stigma, oppression, and discrimination. People with DDs, as Mulcahy (2012) argues, "may refuse to cooperate with outsiders who appear potentially discriminatory" (p. 167). Therefore, we need to be critical of studies' sampling inclusion criteria in the DDs field, as they may both constitute a barrier for participation and reinforce discriminatory research practices.…”

“…Efforts to employ inclusive research include critical perspectives that challenge “traditional notions of normative participation” (Ashby, 2011, p. 1), and accessible research design (Morrisey, 2012; Rios, Magasi, Novak, & Harniss, 2016) and strategies to promote the participation of persons with disabilities in project design, planning, and data collection (Buettgen et al, 2012; Duckett & Fryer, 1998). Such efforts are seen in the following research initiatives related to persons with disabilities’ experiences of research inclusion (Bigby, Frawley, & Ramcharan, 2014b; Kitchin, 2000): power relations in designing and conducting research (Fitzgerald, Jobling, & Kirk, 2003; Gustafson & Brunger, 2014); social exclusion (Hill, Davis, Prout, & Tisdall, 2004; Morris, 2001); methodological considerations (Atkinson, 2004; Smith-Chandler & Swart, 2014); ethical considerations (Cameron & Murphy, 2007; Morrisey, 2012); analysis of the relevance of partnerships with the disability community (Mulcahy, 2012), and on the broad issue of participation vis-à-vis collaboration in contexts of policy, practice, and research (Hall et al, 2017; Hill et al, 2004; Lutz, Fisher, & Robinson, 2016); and specific toolkits to better accommodate persons with disabilities in research have been proposed (Kidney & McDonald, 2014; Teachman & Gibson, 2013). Although it is beyond the aim of this article to discuss the contributions of these studies, it is important to recognize their efforts, and to learn from their challenges and failures, so we can move forward in our common goal to achieve inclusion of the persons with disabilities into the planning, design, implementation, and knowledge translation of research.…”

Sharing the focus: engaging with support workers to include people with communication needs in research

“…Others rely on significant others in their lives, such as family members, friends, or people they trust, rather than a researcher, to support them to take part in research (e.g. Mulcahy ; O'Brien et al . ).…”

“…These people are often familiar with the person's preferred communication means and can assist them to participate in the research. They can hold expertise in specific communication tools, assist the person to feel comfortable instead of intimidated, and support them to respond authentically (Mulcahy ). Risks such as conflict of interests may arise though, especially if the subject of the research or evaluation is the service which the worker is paid to deliver.…”

An investigation of the role of social support on physical activity participation among adults with intellectual disability

“…A common approach used by many researchers, particularly those using multiple points of data collection, was to develop rapport and trust with participants to enable them to feel comfortable and share their experiences (e.g., Gates & Waight, 2007;Jahoda & Markova, 2004;McDonald et al, 2013;Mulcahy, 2012;Stalker et al, 2011). The amount of time taken to build relationships and rapport with participants varied considerably with some researchers investing time prior to data collection (Nonnemacher & Bambara, 2011;Stalker et al, 2011), whereas others invested time at the start of the research process and continued to build rapport throughout the data collection process (Bernert & Ogletree, 2013;Ellem & Wilson, 2010;Gates & Waight, 2007;Stalker et al, 2011).…”