Insult and injury: a narrative approach to understanding the emotional and psychological abuse and neglect of people with intellectual disability in disability accommodation services

Abstract

Emotional and psychological abuse and neglect is poorly recognised in the lives of people with intellectual disability. While research into abuse and neglect has found this a longstanding and significant problem affecting the lives of people with intellectual disability, most of these studies have focused on physical and sexual abuse. For people with intellectual disability living in accommodation services, abuse can also be linked to the responses of compliance based services systems, in which a strong emphasis is placed on managerial and technical approaches to the development and operation of disability accommodation services. Within this context, this research aimed to gather new insights about the experiences of emotional and psychological abuse of people with intellectual disability living in disability accommodation services. The study addressed three key research questions, namely:  How do people with intellectual disability understand the experience of psychological and emotional abuse and neglect in disability accommodation services?  What is the impact of that experience on them?  What factors might predispose people to abuse, increase their risk and protect them against this form of abuse and neglect? The study adopted a narrative approach and is based in the belief that the knowledge and truth about the issue is vested in those who have lived it, and those close to them. A new approach was developed for the study using narrative collage. Narrative collage involves putting the person with intellectual disability at the centre of the collage, and inviting other supporters into the research (with their agreement) to ‘bolster’ their narratives. Together, their stories build a collage of the person’s experience. It is fundamentally about gathering collective experience to develop new understanding. Four people with intellectual disability and their supporters participated in the research in this way. Five family members participated in the research on behalf of their family member with high support needs. Narratives or stories of the experiences of nine people with intellectual disability in disability accommodation services grew from this involvement. A further sixteen people from policy and advocacy bodies participated in the research as key stakeholders, talking about systemic issues. A framework for understanding emotional and psychological abuse and neglect was developed during the research, and used to group the abuse and neglect experiences into the following categories: caregiver privilege; degrading; isolating; minimising, justifying and blaming; neglecting; terrorising; withholding, misusing or delaying needed supports; and corrupting and exploiting. The narratives revealed a total of 228 incidents of emotional and psychological abuse and neglect in participants’ ‘service lives’. All nine people experienced multiple forms of emotional and psychological abuse and neglect on multiple occasions. Results revealed that while some abuse was caused by the actions of malicious individuals, more commonly, abuse and neglect was caused by staff following service policies and routine practices that did not adequately respect people’s rights. The use and misuse of power and control emerged as a central theme in all experiences. The impact of this abuse and neglect on participant’s lives has been significant and is manifested through long standing issues with emotional and mental health, capacity to develop and maintain relationships, ability to trust, and cultural connections. Despite this volume and range of abuse and neglect, people demonstrated great resilience in dealing with their abuse. All had strategies for managing their emotions and the distress that the abuse caused, and had moved on with life in important ways. Four key issues emerged from this research which have particular importance for policy, practice and research, as they grow from the lived experience of people with intellectual disability. These problems concern  the central place of systems in this form of abuse and neglect  the cumulative impact of emotional and psychological abuse and neglect over time  recognition of emotional and psychological abuse and neglect by people with intellectual disability, and  the lack of moral authority accorded to people with intellectual disability in abuse acknowledgement and reporting. The study concluded that approaches are needed that build capacity in people with intellectual disability and in those who support them to resist and deal with emotional and psychological abuse and neglect.