Negotiating Communication Options for Deaf-Disabled Children

Authors: Steven J. Singer, Julianna F. Kamenakis, Allison R. Shapiro, Kimberly M. Cacciato

Abstract:

Communication and language are topics frequently studied among deaf children. However, there is limited research that focuses specifically on the communication and language experiences of Deaf-Disabled children. In this ethnography, researchers investigated the language experiences of six sets of parents with Deaf-Disabled children who chose American Sign Language (ASL) as the preferred mode of communication for their child. Specifically, the researchers were interested in the factors that influenced the parents’ decisions regarding their child’s communication options, educational placements, and social experiences. Data collection in this research included 18 hours of semi-structured interviews, 20 hours of participant observations, over 150 pages of reflexive journals and field notes, and a 2-hour focus group. The team conducted constant comparison qualitative analysis using NVivo software and an inductive coding procedure. The four researchers each read the data several times until they were able to chunk it into broad categories about communication and social influences. The team compared the various categories they developed, selecting ones that were consistent among researchers and redefining categories that differed. Continuing to use open inductive coding, the research team refined the categories until they were able to develop distinct themes. Two team members developed each theme through a process of independent coding, comparison, discussion, and resolution. The research team developed three themes: 1) early medical needs provided time for the parents to explore various communication options for their Deaf-Disabled child, 2) without intervention from medical professionals or educators, ASL emerged as a prioritized mode of communication for the family, 3) atypical gender roles affected familial communication dynamics. While managing the significant health issues of their Deaf-Disabled child at birth, families and medical professionals were so fixated on tending to the medical needs of the child that the typical pressures of determining a mode of communication were deprioritized. This allowed the families to meticulously research various methods of communication, resulting in an informed, rational, and well-considered decision to use ASL as the primary mode of communication with their Deaf-Disabled child. It was evident that having a Deaf-Disabled child meant an increased amount of labor and responsibilities for parents. This led to a shift in the roles of the family members. During the child’s development, the mother transformed from fulfilling the stereotypical roles of nurturer and administrator to that of administrator and champion. The mother facilitated medical proceedings and educational arrangements while the father became the caretaker and nurturer of their Deaf-Disabled child in addition to the traditional role of earning the family’s primary income. Ultimately, this research led to a deeper understanding of the critical role that time plays in parents’ decision-making process regarding communication methods with their Deaf-Disabled child.

Keywords: American Sign Language, deaf-disabled, ethnography, sociolinguistics