This is Zali's story of facial disfigurement

As a newborn baby who had only been in the world for 10 days, the trajectory of her life changed forever when she was in a serious car accident. Initially, doctors were unsure if she would live.

While she survived, the prognosis was still dire: doctors did not think she would have the cognitive ability to get past year 10.

But while the Victorian Central Highlands born and bred woman has lived with injury as a result of the accident throughout her life, she has defied this belief.

Ms O'Dea, of Ballarat, has been diagnosed with an acquired brain injury and one of the rarest ocular palsies in the world, called third nerve palsy, which is the cause of her disfigurement.

She prefers to use this word rather than 'difference' as it is what is used in the medical and legal professions.

This Face Equality Week she is sharing her experience in an effort to start valuable conversations and raise awareness of the experiences of people living with facial disfigurements.

"It means that we are able to voice our lived experience of the everyday grind of going out in public and being stared at, avoided or spoken rudely of.

"This week allows us to begin to have a dialogue with society and say 'this is how you've been taught' but these are the consequences of that - we are ostracised, we are discriminated against, we are bullied."

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Adding that people living with facial disfigurement are often wrongly perceived to be of lesser intelligence and so are spoken to that way, Ms O'Dea said that "what we need to do is change the narrative".

Instead of teaching children that it is rude to stare and ask questions of people who look different, she instead advocates for people to 'do the four' - smile, say hello, assume intelligence and politely ask a genuine question regarding the disfigurement.

With a background in teaching, Ms O'Dea has been involved in academia for more than a decade.

She has written papers on facial disfigurement, peer reviewed academic journals and is currently completing a PhD on the subject.

An accredited counsellor, she also has more than a decade of experience in specialised counselling relating to facial disfigurement under her belt.

With no other services that she knows of offering counselling from people with lived experience, in 2015 Ms O'Dea founded Karibu Anawim - meaning 'welcome to the way of victory'.

Located in Brown Hill, the organisation offers training and development for professionals in addition to supportive counselling for children and individuals living with facial disfigurements and their families.

Ms O'Dea believes awareness and education, such as through Face Equality Week, is vital in changing the narrative.

One step towards this is parents realising the impact a disfigurement can have on their child.

Recent research found parents of children with facial disfigurements did not understand how concerned children were about their appearance and therefore the impact it had on their self-esteem.

In 2017 Ms O'Dea designed, implemented and ran the first course in Australia for parents living with a child with facial disfigurement from the Royal Children's Hospital in Melbourne and regularly speaks at conferences.

As a counsellor, she works with children and families experiencing an array of issues as a result of a facial disfigurement - from feeling misunderstood to avoiding contact with others.

"Kids come in because of bullying and low self-esteem but there is an extra layer of being different and not being able to fit in because of that difference," she explained.

No matter how slight or severe the disfigurement, Ms O'Dea said a child, or person, would still be treated differently. She explained that it was okay to seek help.

"Parents need to know and be aware of that because there's a myth out there that the greater the disfigurement, the greater the distress, but that has been debunked in literature. But us as a society need to catch up with that."

She reassured that it was okay to seek help - whether as a parent or for professional development.

Fore more information, visit: https://www.karibuanawim.com/

Face Equality Week runs from May 17 until May 21.