This paper presents the lived experience of an intergenerational family, spanning three generations living with Facial Eye Disfigurement (FED). Living with vision loss and FED is estimated to affect nearly 8 billion people worldwide. Inadequate attention is paid to the impact of Living with FED (LwFED) on the lives of individuals. This research offers a deep dive into the lived experiences of one family LwFED. This family comprises a grandfather (deceased), son, wife, and child, all of whom have lived or live with FED. In this Interpretive Phenomenological Analysis (IPA) study three interviewees are deemed the experts. Data were collected using in-depth semi-structured interviews conducted by Zali who lives with FED. Our findings speak of childhood and subsequent issues living with FED (LwFED), family experiences of living with family members with FED while simultaneously LwFED themselves, shared stories and role modelling. We discuss LwFED healthily through the creation of a safe family space through acceptance, belonging, and support. We introduce and discuss the role of the eyelid, functioning versus non-functioning. We offer insights and understandings of an intergenerational family living with LwFED to advance research and inform practice within diverse fields.


Facial Eye Disfigurement, visible difference, facial disfigurement, facial difference, lived experience, intergenerational trauma, intergenerational eye health, eye health, eye issues, Duanes syndrome, Interpretative Phenomenological Research (IPA)

Author Bio(s)

Dr. Zali O'Dea is the Founding Director and Principal Counsellor/Educator of Karibu Anawim meaning "Welcome to The Way of Victory." Karibu Anawim trains, equips and nurtures individuals as well as their family members living with facial disfigurement. Zali regularly presents and is involved nationally and internationally to educate relevant parties, raising awareness about the issues pertaining to living with facial disfigurement and facial eye disfigurement. Zali is a published researcher in this field as well as holding an insider status. Please direct correspondence to zali.odea@karibuanawim.com.

Dr. Jane Southcott is a Professor, Faculty of Education, Monash University, Australia. As a phenomenologist, Jane researches music education, cultural identities and hybridity, and community engagement with the arts focusing on lifelong education. A revisionist historian, Jane researches music education in Australia, Europe, England, and the USA. She is Co-editor International Journal of Music Education and a life member of the Australian and New Zealand Association for Research in Music Education.

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