‘Through my eyes’: feminist self-portraits of Osteogenesis Imperfecta as arts-based knowledge translation

Abstract

In this paper, we present an exploration of arts-based knowledge translation through photography highlighting the lived experience of Osteogenesis Imperfecta (OI), a genetic disorder. It forms part of our larger photovoice research project that involved six female photographers with physical impairment. This group of women shared their personal experiences through photographic stories to challenge pervasive, limiting negative attitudes and assumptions that surround disability. In this paper, we focus on the data, analysis and discussion to one type of impairment, OI, and two photographers’ work to present their:

• embodied expertise and knowledge of living with OI;

• self-portraits as contemporary disability identity, contributing to intersectionality in feminist and disability arenas;

• authentic voice as co-authors of this paper using Drew and Guillemin’s interpretive engagement framework;

• original arts-based research insights currently absent in the meagre qualitative research on OI.

By presenting, analysing and interpreting self-portraits of OI as valuable arts-based knowledge, we hope to provide readers with a better understanding of disability and femininity as a pathway to greater inclusion.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

The first author is a recipient of an Australian Government Research, Training Programme Scholarship.

Notes on contributors

Diane Macdonald

Diane Macdonald is a doctoral candidate at the School of Psychiatry UNSW Sydney and Black Dog Institute at UNSW Sydney. Her research area focuses on the intersection of photography, gender and social justice. Previously, Diane was the Managing Editor of the Australian Journal of Human Rights, the Photo Editor of the Human Rights Defender and the Centre Manager for the Australian Human Rights Centre based at UNSW Law. She holds a Master of Documentary Photography, a Master of Business Administration and has been a professional photographer for over 30 years.

Evianne L. Van Gijn-Grosvenor

Evianne L. Van Gijn-grosvenor is a photographer and manages formal complaints and student discipline matters at Macquarie University. She holds a PhD in Psychology, focusing on child sexual abuse and children’s memories of traumatic events.

Melinda Montgomery

Melinda Montgomery is a photographic artist from Wollongong Australia who has been photographing for over 20 years. Her training stems from 35 mm black and white film with Pentax film cameras from the 90s. Honing her skills from the film era, she has developed a new style emerging into the digital age, taking her from the darkroom to the desktop. Melinda credits her unique style to adapting to the restrictions of the world around her and her wheelchair and encourages others to view the world through her perspective.

Angela Dew

Angela Dew is Associate Professor Disability and Inclusion at Deakin University, Melbourne where she is engaged in research and teaching related to people with disability and complex support needs. Angela is a sociologist with 38 years’ experience in the Australian disability sector. Her research relates to understanding the specific issues faced by people with cognitive disability and a range of complexities including living in rural and remote locations and coming from an Aboriginal or refugee background. Angela uses qualitative and arts-based methods within an integrated knowledge translation framework to ensure her research results in practical solutions that can be tailored to individuals and local communities.

Katherine Boydell

Katherine Boydell is Professor of Mental Health at the Black Dog Institute and Head of Knowledge Translation, Sydney Partnership on Health, Education, Research and Enterprise (SPHERE). She also holds several Adjunct positions at leading Canadian institutions: Adjunct Senior Scientist, Child and Youth Mental Health Research Unit, Hospital for Sick Children, Toronto; Adjunct Professor, Department of Psychiatry and Dalla Lana School of Public Health, University of Toronto; Adjunct Professor, Graduate Programme in Theatre, York University, Toronto. Her programme of research focuses on understanding the impact of using a wide variety of art genres in child and youth mental health research, for both knowledge production and knowledge dissemination.