‘Change your appearance so you can be a little kinder on yourself,’ a date once told Melbourne writer and activist Carly Findlay, referring to the genetic skin condition that leaves her skin forever scaly, itchy and shiny red. Too many people, assuming Findlay’s face is flushed crimson with severe sunburn, take the opportunity to publicly scold her. Or worse. ‘If I was in your situation, I’d top myself,’ someone once told her. She tries to adopt a more or less stoic attitude toward the daily ‘staring, commenting and teasing’, knowing it is part and parcel of life with a visible disability.
Findlay’s disability is doubly public, for she writes openly through her blog and social media about life with ickthyosis, an incurable condition that affects only 10 to 20 people per million. With heartfelt missives that read more like deeply personal letters, Findlay, who is 32, bares her private self to a world already looking, questioning and commenting on the outer shell they see. ‘I like to tell my story on my own terms,’ she says. In a tone that suggests she has previously faced the kind of hatred that internet anonymity breeds, she adds: ‘I think you do have to have thick skin.’
