I am not white.
Having Ichthyosis – specifically Netherton’s Syndrome, which causes red skin – means that my mixed race heritage is not apparent to others.

My Mum is a coloured South African (the term she uses) and my Dad is a white Englishman. My parents met in South Africa and because of Apartheid, courted illegally and then moved to Australia to marry in 1981. My Dad recently described the move as “thumbing their noses at the Apartheid”, and said he’s angered by the racism that continues towards black people right now.
My race wasn’t apparent to me for a long time either – because my skin is not black nor white, and the medical and social aspects of Ichthyosis consumed my thinking about identity. And I have been discriminated against because of my skin colour, but never my race.
The genetic makeup of Netherton’s Syndrome means that I look more like others with the condition than my extended family. I don’t look like my English family, and I don’t look like my South African family or friends. My curly hair is perhaps the only indication of my heritage.
It’s only in recent years that I have identified as being a woman of colour – and thought about my race, especially through my writing. That has happened when I’ve been asked to write about my family heritage (see Growing Up African in Australia), and also when I’ve connected with strong, outspoken women of colour.
Women like Candy Bowers, Pauline Vetuna, Namila Benson, Villissa Thompson, Laila Thaker, Jeyza Gary, Sisonke Msimang, Keah Brown, Imani Barbarin, Maxine Beneba Clarke, Flex Mami, Denise Chapman, Anita Heiss, Vanamali Hermans, Faustina Agolly, Santilla Chingaipe, Nova Reid, Melissa Lucashenko, Tara June Winch, Thelma Plum, my Mum – Jeanette Findlay, and her friends and family who I’ve connected with on Facebook, I got them, more than I got white people. And they have taught me so much.
But I am white passing. I don’t think I look a lot like my Mum, or my Dad even. The skin on my body – especially my arms – is significantly less red than my face.
I think of the ways I’ve benefited from white privilege – and I realise that I need to do better in speaking up and dismantling it.
I grew up in a very white Australian county town where my mum’s blackness was spoken about in whispers. Kids at school – and adults at Sunday school – told me that I am red because my parents are black and white. The old sin trope. Of course I never believed that, because my parents taught me about the genetics of ichthyosis from a young age, and as a result, I rejected religion too.
When I was a kid, Mum told me a lot about South African history – which was, of course at the time, the present. Apartheid was still in place until I was nine. She told me about Steve Biko, and how she could see Robben Island from where she lived – where Nelson Mandela was imprisoned. She talked about the race riots and how people so kindly kept her and my Dad’s relationship a secret. If it were public, Mum could have gone to gaol. Less than forty years ago, Mum had to carry a passbook to prove her race. My Mum’s mother, Elsie, worked as a servant, and her Aunty Josie raised her and her brother. They didn’t have much money, but they had love.
And my parents came to Australia for a better life – for a life where their love was legal. And they made a real go of things, working hard and moving forward so that I would never have to endure what they did. I never understood how Mum could be homesick when she had Dad and I in Australia. But, the enormity of it all – moving countries for love, raising a very sick baby without family support, knowing her family and friends were still under the unjust, unfair racist regime back home.
I would make biryani and baboite for Harmony Day but I’d never set aside enough time to explore my racial identity, because I didn’t think I had the right to claim it. Stella Young asked me to write on the intersection of race, colour and ichthyosis before she died, and I was too scared to delve. I didn’t feel I was ready then, and I didn’t feel the white people around me were ready either. I shouldn’t have put those people first.
I feel a sense of guilt that I didn’t understand my own race until recently, and this is a complex and confusing thing for me to navigate.
It also seems complex for others to navigate – some white people don’t take me as seriously when I talk about race issues, or try to make me feel guilty for their white privilege, because they assume I am white.
I’ll do everything I can to read, listen and and learn from people of colour, to look at and eliminate my own unconscious and conscious biases, to unpack my internal and external racism, and to continually learn about Aboriginal history and culture that was shamefully not taught during school.
And while I won’t claim racism as my own struggle, many disabled people of colour – and people with Ichthyosis – experience racism *and* ableism. Imani Barbarin wrote briefly about the way Black disabled people are affected by police brutality here. The Guardian also covered the topic – stating “What do Sandra Bland, Eric Garner, Freddie Gray, Tanisha Anderson, Deborah Danner, Ezell Ford, Alfred Olango and Keith Lamont Scott all have in common? They were all black Americans who died at the hands of the police or in police custody. And they were all also disabled.”
I want to continue to pass the mic – especially to make space for disabled people of colour, and amplify their voices.
It’s the least I can do.

Thank you to Jeanette Findlay, Candy Bowers and Jeyza Gary for reading this and offering their thoughts before publishing.
Has this post helped you think differently ahout appearance diversity and skin conditions? Will you use it in your work? Please buy me a drink!
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