‘Own stories’: Looking closely at the narrative environment co-created with people with intellectual disability in transition to adulthood telling their stories about sexuality and relationships

A/Prof. Patsie Frawley1, Monica Wellington, Dr Amie O’Shea

1University Of Waikato, Hillcrest, New Zealand

Background
The transition period from adolescence to adulthood is an important time for social and sexual development. Young people with intellectual disability are often socially isolated, have limited opportunities for self-determination about sexuality and relationships, and rarely get to talk about these experiences. Our research engaged with people with intellectual disability in this transition stage to co-develop their stories. Resources using these stories are being piloted with people with intellectual disability seeking education and guidance on sexuality, relationship, and identity development into adulthood in a subsequent phase of this study.

Method
Stories are central to Western qualitative inquiry since at least the 1800s .The term ‘own stories’ has been used in qualitative research to situate the told narratives from people whose lives are often told by others in research ‘about’ them. The research reported in this paper involved in-depth narrative work with people with intellectual disability co-creating their ‘own stories’ about sexuality, relationships and intimacy. The story co-development was framed by a focus on the narrative environment and how an understanding of this environment can frame the way stories are told and how they inform research.

Results
The in-depth description of the method and reflective practice of this narrative research method offers disability researchers guidance on the complex collaborative approach to co-development of stories in research with people with intellectual disabilities. Ideas about sexuality, relationships and identity ‘told’ through these stories offer an alternative narrative about sexuality in the lives of people with intellectual disabilities transitioning to adulthood.

Implications
The findings contribute to inclusive research work and the narrative research tradition with people with intellectual disability.


Biography:

Patsie Frawley is an Associate Professor of Disability and Inclusion Studies in the University of Waikato, Te Kura Toi Tangata, School of Education at the University of Waikato, Hamilton New Zealand. Patsie’s research focuses on sexuality and relationship rights, and prevention of violence and abuse of people with disabilities.

Monica has a Bachelor of Health Sciences and Master of Dietetics from Deakin. She has worked as a research assistant and Associate Research Fellow in the Disability and Inclusion team with Associate Professor Patsie Frawley since 2016, coordinating research and program development nationally for the Sexual Lives and Respectful Relationships program and working on data collection and analysis in research projects on disability, sexuality and relationships. She is a PhD student at Victoria University and is a Dietitian in private practice with a particular interest in health and nutrition for people with disability.

Dr Amie O’Shea is a Lecturer in the School of Health & Social Development at Deakin University, previously at the Australian Research Centre in Sex, Health & Society. With an academic background in critical disability studies, Amie’s research and teaching takes a poststructuralist approach to sexuality and gender for people with intellectual disability. Her research work has been in and around violence and abuse, respectful relationships, and most recently on two projects on LGBTIQA+, the first with people with disability as a whole and the second with people with intellectual disability. Her work is inclusive and collaborative of people with disability.