Questioning the Notion of Verbalness Through the Perspectives of Mothers of Children With Dis/abilities

• In Event: Disrupting Notions of Normalcy and White Supremacy: Radical Imaginations Across Educational Research

Abstract

Purpose: Children with disabilities, especially those whose primary mode of communication is everything other than verbal, are often pathologized and labeled as incompetent (Dindar et al., 2017; Lester, 2015). As parents of children of color with dis/abilites, they resist labels attached to their children while resisting the idea of normalcy (i.e., verbalness) crafted through the forces of racism and ableism. The purpose of this paper is to understand the lived experiences of mothers who have children with dis/abilities in relation to the idea of normalcy.

Theoretical framework: DisCrit acknowledges the interconnectedness of racism and ableism that normalize white, middle-class, and able-bodied ways of being (Annamma et al., 2016). I used Dis/Crit in this paper to trouble the meaning of normalcy in the lives of mothers of color with children with dis/abilities and to approach dis/ability as a social construction, not as an innate problem or deficit within the person.

Methods and Data: This study used narrative inquiry (Clandinin, 2006) and a variation of Video-Cued Ethnography (VCE) (Adair et al., 2018; Tobin et al., 2009) to interview five mothers – four African American mothers and one Turkish immigrant mother - of children with dis/abilities. In total, 31 individual life history interviews and a focus group interview were collected as data. In this paper, the stories of two mothers, who each have a son labeled with Autism Spectrum Disorder (ASD), will be highlighted to address how the notion of verbalness was manifested in their experiences and to highlight mothers’ efforts to question unjust treatments their children encountered.

Results: Elina (all names are pseudonyms) is an African American mother and she described her 6-year-old son, Jadyn, as a smart and bright child who is “non-verbal.” He uses a communicator to interact with others at school so there were some limits in the way that he could participate in class via Zoom, especially during a pandemic. Because of this, his smartness and strength often went unnoticed by his teachers. Feray is a Turkish immigrant mother who has a 13-year-old son, Nuri. He can verbally engage in conversations, but often needs some prompts to continue communication. He taught himself to play the piano and could play cello. Yet, his music teacher made assumptions about his (in)ability to play music, because Nuri didn’t talk about it nor did the teacher make an effort to ask him. Feray later had to show the videos of her son playing the cello to the teacher who told Feray that it’s a terrible idea for Nuri to take orchestra as an elective class.

Significance: These stories illustrate how verbalness is equated as knowledge/ability and an indication of normalcy based on ableism and racism that mothers continued to resist. Parents of children with dis/abilities play an important role in “sharing the knowledge of their own child’s understanding and experiences'' (Connor & Berman, 2019, p.3), so listening to them offers us the opportunities to be touched and changed by their lived experiences and stories.

Author

• Sunmin Lee, Texas State University