Constructing Parental Choice in Deaf Diagnostic and Intervention Practices in Ontario

The goal of Ontario’s Infant Hearing Program (IHP) is to screen all babies at birth, to identify the 3 or 4 out of 1000 babies expected to be deaf or hard of hearing from birth, and to provide supports and services to identified children under the age of six. Situating my research within disability studies to question normative assumptions about speech, language, and hearing, through interpretive analyses of IHP documents and parental interviews I examined how language and deafness are made meaningful through text and lived experience, and how parents come to make hearing technology and communication modality choices for their children amongst competing discourses of deafness and language. Although the identification of these few children is the IHP’s justification for screenings, I found the discourse of screening constitutes these children’s hearing levels as problematic and unwanted. Normative assumptions construct parental choice by presenting deafness as an unthinkable outcome of screening and spoken language services as the ‘right’ way to deal with this outcome. I also found the services and hearing technologies offered, and when they were offered, differed depending on whether a child has additional diagnoses and are assumed able to learn spoken language, demonstrating a hierarchy of normalization. Furthermore, the IHP’s principle of fully informed choice and consent was found to narrowly reflect medical knowledges of deafness; comprehensive information about sign language and Deaf culture was not included. My analysis also found parents may resist medical knowledges of deafness and request alternate services as they get to know their child beyond diagnostic assumptions. These findings indicate parents and their children may be better aided by services that promote a wider variety of communication options from infancy, regardless of expected outcomes. My dissertation concludes with an exploration of ways the IHP can imagine deafness as something other than a problem.Ph.D