Kathleen Ellem

Ethical challenges of life story research with ex‐prisoners with intellectual disability

This paper outlines the ethical considerations when engaging in life story research with ex‐prisoners with intellectual disability. Based on a study conducted in Queensland, Australia, the authors explore some of the challenges that have arisen through the lens of principle‐based ethics. The significant disadvantage experienced by ex‐prisoners with intellectual disability warrants further attention by social researchers, and care must be taken not to further harm this group through the research process. Issues pertaining to the broad ethical concepts of integrity, justice, respect for persons and beneficence are examined to identify the degree to which they can guide the actions of the life story researcher. Examples are given as to how the researcher responded to difficulties as they arose and the authors discuss ways forward from a principle‐based approach.

Social Work with Marginalised People Who have a Mild or Borderline Intellectual Disability: Practicing Gentleness and Encouraging Hope

Abstract People with mild or borderline intellectual disabilities are a group of people who usually do not meet the eligibility criteria for specialist disability services, yet are high users of many generalist services, such as mental health, child protection, and criminal justice systems. They may traverse many services, often entering, exiting, and returning to the same service providers with few positive results. This article explores the practice approach of the Meryton Association, a medium-sized nongovernment agency located in Brisbane, Australia. The Meryton Association provides social work support to people with mild to borderline intellectual disabilities, actively assisting this group to build relationships, resources, knowledge, and autonomy in their everyday lives. Using qualitative in-depth interviews with Meryton Association staff and secondary analysis of Meryton Association policy and practice documents, the challenges and opportunities of using this practice approach have been documented. The article proposes that specialist services are needed that use a developmental approach, stress the importance of relationship, and the need to practice gentleness and hope in social worker-client interaction.

Life Story Work and Social Work Practice: A Case Study With Ex-Prisoners Labelled as Having an Intellectual Disability

Abstract In common with other professions social workers have the power to articulate certain ‘‘truths’’ about the people who use their services (Hare Mustin, 1994). These knowledge statements about people, often situated in case files may become the only background information of the lived experience for people with disability (Gillman, Swain, & Heyman, 1997). Social workers need to develop interviewing, assessment and recording practices that give precedent to the worldview of service users, if they are to truly understand and respond effectively to peoples lives (Bigby, 2007). One such way of doing this is by adopting a life story approach to working with vulnerable people, which can provide a holistic stance to a persons social reality (Ortiz, 1985). This article outlines the use of this approach in research with Queensland ex-prisoners who were labelled as having an intellectual disability. By explaining the process used by the first author (hereafter known as the researcher), the methodological findings of this study illustrate how life story work can contribute to social work practice.

1000 Voices: Reflective online multimodal narrative inquiry as a research methodology for disability research:

This article outlines the research approach used in the international 1000 Voices Project. The 1000 Voices project is an interdisciplinary research and public awareness project that uses a customised online multimodal storytelling platform to explore the lives of people with disability internationally. Through the project, researchers and partners have encouraged diverse participants to select the modes of storytelling (e.g. images, text, videos and combinations thereof) that suit them best and to self-define what both ‘disability’ and ‘life story’ mean to them. The online reflective component of the approach encourages participants to organically and reflectively develop story events and revisions over time in ways that suit them and their emerging lives. This article provides a detailed summary of the projects theoretical and methodological development alongside suggestions for future development in social work and qualitative research.

Effective responses to offenders with intellectual disabilities: generalist and specialist services working together

Abstract Despite policies of deinstitutionalisation, many people with intellectual disabilities in developed western countries continue to live in mainstream institutional settings, such as correctional facilities, rather than in the community with support from disability services. This paper reports on the life stories of 10 people with intellectual disabilities, who had been imprisoned in adult correctional facilities in Queensland. The pathways taken by these 10 people into and out of prison are marked by significant abuse, neglect, and poverty. Significant disparity and disconnection is also displayed between the policies and service approaches, particularly between the disability, mental health, and correctional systems in Queensland. Based on these findings, a framework for practice, which spans both generic and specialist services, is suggested.

Crafting and Retelling Everyday Lives—: Disabled People’s Contribution to Bioethical Concerns

This commentary draws out themes from the narrative symposium on “living with the label “disability”” from the perspective of auto/biography and critical disability studies in the humanities. It notes the disconnect between the experiences discussed in the stories and the preoccupations of bioethicists. Referencing Rosemarie Garland-Thompson’s recent work, it suggests that life stories by people usually described as “disabled” offer narrative, epistemic and ethical resources for bioethics. The commentary suggests that the symposium offers valuable conceptual tools and critiques of taken-for-granted terms like “dependency”. It notes that these narrators do not un–problematically embrace the term “disability”, but emphasize the need to redefine, strategically deploy or reject this term. Some accounts are explicitly critical of medical practitioners while others redefine health and wellbeing, emphasizing the need for reciprocity and respect for the knowledge of people with disability, including knowledge from their experience of “the variant body” (Leach Scully, 2008).

When Families Relinquish Care of a Child with a Disability: Perceptions from Birthmothers

Abstract This paper explores the experiences and perceptions of four mothers who relinquished care of their child with a disability to residential care in the child protection system in Queensland. Qualitative in-depth interviews were conducted with mothers who asked the statutory authority to assume care of their child. The mothers’ narratives put into sharp focus the socio-political nature of caring for a person with a disability, and the need for more coordinated resources and expertise in supporting such families. According to the mothers’ perspectives, relinquishment provided some reprieve from daily caring responsibilities but was complicated by associated feelings of grief, anxiety, and guilt; behavioural and emotional adjustment of the child with a disability; and difficulties working collaboratively with child protection workers. The findings highlight service deficiencies and the need to build a strong evidence base to improve practice in these areas.