Revealing disjunctures: Making tensions between fetal alcohol spectrum disorder diagnoses and institutional supports visible

Abstract

Institutional ethnography (IE) is a method of inquiry that offers emancipatory possibilities. This paper reveals how IE's emancipatory value is linked to identifying and examining disjunctures, which are discrepancies and disconnections between what is understood to be happening versus what is actually being experienced. Using examples from an IE study that examined the social organization of supports and services for children medically diagnosed with fetal alcohol spectrum disorder (FASD) in an urban community in eastern Canada, four specific disjunctures are revealed and discussed. These disjunctures make various disconnections between school-aged children diagnosed with FASD and institutional supports visible. Furthermore, I illustrate how the ambiguity of institutional policies and communication makes it difficult for children living with FASD to thrive. This study also reveals how caregivers are required to be FASD experts while not being seen or treated as experts. By uncovering and making disjunctures visible, I argue that IE studies can draw evidence-based attention to specific institutional policies and practices that are missing or require change.