People living with facial eye disfigurements (LwFED) are often shunned by a society that makes spontaneous judgements based on appearance. This article is a case study of the lived experience of Toni, a 27-year-old woman LwFED, the result of her treatment for ocular cancer. Semi-structured interviews facilitated the exploration of her experiences. We present the findings chronologically but interwoven with themes such as: being strong for others; responding to her partner’s abuse; dealing with strangers; and reinventing her sense of identity and supporting others. We identified institutional perspectives of work, hospital, and family within the prevailing UK that impacted Toni’s experiences of LwFED and argue that institutional perspectives need to be educated about the ordinary person’s daily grind of LwFED to address unrecognised bias and assumption. Only when identified and addressed can the reframing of social, institutional, organisational, and medical understandings and responses facilitate and support the lives of those LwFED.


Facial Eye Disfigurement, visible difference, post-cancer, facial disfigurement, cancer survivor, social media, active intentional decision making, social exclusion, Interpretative Phenomenological Analysis (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. Karibu Anawim offers a range of professional development and consults a broad range of professionals. 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. Jane researches music education, cultural identities and hybridity, and community engagement with the arts focusing on lifelong education as a phenomenologist. Jane researches music education as a revisionist historian 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. Please direct correspondence to jane.southcott@monash.edu.

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