When you lack the word : stories from parents of children with visual and other disabilities : a thesis presented in partial fulfilment of the requirements for the degree of Master of Philosophy in Social Policy and Social Work at Massey University

Abstract

This document, submitted as a Master's thesis, describes a research project carried out during 1994 and 1995. The study arose out of my multiple identity as a parent of two children with a visual disability, as a professional working in the field, and as a researcher. The aim of the study was to find out how parents of children with disabilities cope: what strategies they employ to deal with the situations they face; how they effect the changes they see as necessary for their children and for their families; and what they want from professionals. Research data was collected through unstructured in-depth interviews with six respondents from a group of parents of children with visual impairment. I had access to this national group through membership of it, and was also known to the respondents as a social worker with the Royal New Zealand Foundation for the Blind, of which all the children involved in the study are members. Data for analysis was also drawn from official documents dealing with disability issues, and from current New Zealand disability literature. Research methods were consistent with an emancipatory approach which aims to avoid appropriation and to share power. Strategies were employed which would privilege the stories and characterise the parents as co-researchers in a collaborative exploration of the lives of children with disabilities and their parents. Theory is used in this study to describe and explain what happens in the lives of children with disabilities and their families, and to imaginatively construct what could happen. My conclusions suggest ways in which professionals can support parents by listening to them, and by offering them respect, competence, and caring. I suggest that professionals should be prepared to take some risks and share some of the consequences of current social attitudes towards disability. I conclude that what parents of children with disabilities want is not so much partnership, but alliances with people who will listen to them and support them in their search for opportunities for their children.