This is my autoethnography about living with Facial Eye Disfigurement (FED). The purpose of this autoethnography is to answer the question, “What are the lived experiences of people living with FED?” There are wide and varying issues faced by people living with facial disfigurement (FD), for example, dealing with psychosocial and psychological aspects, the lived experiences and voices of persons with FED are nowhere in the research literature. The themes presented here are not unique to FED but illustrate how far and wide the phenomenon occurs, themes such as, social isolation, bullying, gatekeepers, discrimination, and hope. The themes are woven into the vignettes presented; all are inextricably woven together like a finely crafted tapestry. In my discussion four foundation blocks are explored: forgiveness; active intentional decisions; healthy self-esteem; spirituality and resilience. These are seen to be the underlying contributors towards why I hold such a positive attitude towards life, despite the everyday grind of explaining myself. In conclusion, I found the voices of FED require assistance and active engagement within the FED/FD community as well as the general public to dismantle myths such as “the greater the disfigurement, the greater the distress.” I founded Karibu Anawim in 2015 which endeavours to train, equip, and nurture people living with FED/FD and the general public.


Face, Facial Disfigurement, Eye Disfigurement, Facial Eye Disfigurement, Facial Difference, Visible Difference, Autoethnography, Karibu Anawim, Faceism, Third Nerve Palsy, Palsy, Facial Palsy

Author Bio(s)

Zali O'Dea is a very experienced and well-qualified teacher and counsellor. She has presented seminars for health professionals, educators and the general public about responding to people with FED. She is the Founding Director and Principal Counsellor & Educator of Karibu Anawim "Welcome to The Way of Victory" an organisation pioneering within Australia into the psychosocial and psychological aspects of living with FD/FED. Zali is unique in that she lives with FED, this brings insight, empathy and first hand experiences which inform her teaching and research. Her current doctoral research explores the lived experiences of those with FED. Correspondence regarding this article can be addressed directly to: karibuanawim@gmail.com.

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