Making the Unspoken Visible Through Clean Language: Interviews With Families Facing Encephalopathy in Their Child

Abstract

Chapter Summary

Human language is entangled with the world we inhabit; through language we construct meaning and communicate about complex human endeavours, relationships and values. But what happens when life displaces people from these familiar meaning-making boundaries?

In this chapter, I describe my work with parents facing a child being diagnosed with Dravet Syndrome, a rare, chronic genetic disease that affects the development of the brain. Families faced with such a diagnosis are left confused and bewildered, unable to call upon familiar resources; even familiar words lose their meaning. ‘It is as if my life had been broken into a 1000 pieces and that from each piece the image had disappeared’, said one parent.

Working as an anthropological researcher, I used clean language interviews to gain deep insight into, and help make visible, these parents' experience. I explain how I stumbled over a number of difficulties in my use of clean language interviewing and how I learned to be creative in order to gain access to what had initially remained hidden in this overwhelming experience. In particular I highlight the value of allowing the interviewee to use me as a temporary ‘body map’ for feelings that appeared too difficult to hold in their own body.

This research enabled me to construct a model of how parents can navigate this experience and to create a facilitation program that is being used to support many such families.

Citation

Korsak, T. (2022), "Making the Unspoken Visible Through Clean Language: Interviews With Families Facing Encephalopathy in Their Child", Cairns-Lee, H., Lawley, J. and Tosey, P. (Ed.) Clean Language Interviewing, Emerald Publishing Limited, Leeds, pp. 117-129. https://doi.org/10.1108/978-1-80117-330-820221008