CW: ableism, eugenics – but a happy ending

• 

• 

• 

I felt reflective earlier in the month – thinking about turning 40.

Forty seemed ancient when I was little. Dad used to say, “you’ll still be my baby when you’re 40”. He called me today and said I’m still his baby. He told me how strange it was when I was born – that I was whisked out of his arms quickly, placed in a humidi-crib, and that the doctors hadn’t seen anything like me before. Ichthyosis was rare, it still is (probably even rarer with pre-natal screening).

Forty seemed unlikely when my parents were told that I wouldn’t survive many months. Forty seemed unlikely when I experienced fear, teasing and discrimination from a very early age. Happiness and self love seemed unlikely when I just wanted to change my skin to fit in. A career that I enjoyed and was good at seemed impossible with all the low expectations within workplaces of my 20s and early 30s.

Something shifted at 30. I found myself, and what I wanted to be. I found disability as an identity and culture. I found community. I realised it was others’ ableist perceptions of me holding me back. And I defied those.

The last ten years have seen me thrive – I am so happy and self assured. I love work and I love my friends and family. It’s much easier to love myself than to hate myself, as I did for years.

I congratulate every new parent on the birth of their child with ichthyosis – I never offer sympathy or apologies, like the many messages they will receive (in good faith of course). I tell them that life will be hard, but it will be amazing. Because I am proof of that.

I never saw my parents grieve for a life they could have had, with a child without ichthyosis. They never grieved over me. I only ever experienced them giving me the best life possible. I have no doubt that their choice to move to Australia to live a more free life shaped that. I’m so thankful to them, and to everyone who has helped me get to 40.

Life with Ichthyosis can be ordinary and extraordinary. My parents never told me otherwise.