Ethics and Promising Approaches of Inclusion of Individuals With Complex Communication Repertoires in Educational Research

• In Event: Questioning in the Margins: Centering Qualitative Methodology and Methods in Historically Marginalized Traditions

Abstract

The research tradition has a dirty history of exclusion, exploitation, and stigmatization of individuals with a disability (see Dakić, 2018). Cases of exclusion of individuals with disability in research, specifically, have been raised for decades, gaining momentum after the “nothing about us without us” movement in the 1990s. From the inaccessible research methods that are heavily speech-oriented (Taylor & Balandin, 2020), issues of ethical consent (Carlson, 2013), stigma (Jagoe et al., 2021), to the vague justification of recruitment criteria (Feldman et al., 2013), the participation of individuals with disability in research has been grossly underrepresented. In mainstream child development research, for example, Feldman and colleagues (2013) noted an alarming percentage of under-representation of children with disability. They found that 90% of the study they reviewed did not include children with disability, and 74% of the studies did not provide justification for exclusion. Their findings mirror a classic study by McGrew and colleagues (1993) that reported a 40-50% exclusion rate of children with disability in the government-funded national health care and education data collection programs. This recurring phenomenon has a direct consequence on the stigma, social exclusion, and our partial understanding of disability experience.

Among the common types of disabilities is complex communication repertoires (CCR) or commonly known as complex communication needs. CCR represents individuals with a disability from a wide range of ages, diverse cultural and linguistic backgrounds, and types of disabilities, including Rett Syndrome and Autism Spectrum Disorder. In the U.S., for example, approximately five million people have CCR. In the school context, speech or language impairment is reported as the second most prevalent disability category of children ages 3-5, and the third most prevalent category of students ages 6-21 served under the Individuals with the Disability Education Act (U.S. Department of Education, 2021). Despite the prevalence of the disability, data in research involving individuals with CCR have been largely based on the verbal accounts of the secondary informants (e.g., parents, friends, and teachers) (Taylor & Balandin, 2020; Boxal & Ralph, 2011).

CCR is not a homogeneous experience and direct participation of students with CCR in educational research is critical for understanding their schooling experiences. While researching with (as opposed to researching on) individuals with CCR has some challenges, their participation in educational research must be proliferated as it accounts for what we think we know about disability and our endeavors for creating more inclusive school environments. To achieve these goals, accessible research methods for collecting visceral first-person stories must be employed. In pursuit of truth about disability experience, this presentation will present some challenges that I experience in researching with individuals with CCR and discuss some promising approaches for inclusion of individuals with CCR in educational research, including the integration of Augmentative and Alternative Communication in research. Participants will be invited to reflect on “How do our speech-oriented research methods marginalize the participation of individuals with CCR in mainstream educational research?”

Author

• Wisnu Agung Pradana, University of Georgia
  Presenting Author