Danny and Smarty spotted in Newtown.
‘People often forget their manners when greeting me and others with facial differences, severe skin conditions and disability. They blurt out what they are thinking about my appearance – often rude and insensitive and often projecting their feelings of insecurities. I just want people to say hello before launching into these questions – though I’d prefer they didn’t ask me at all.
‘I’ve just written a book called “Say Hello” – a memoir and manifesto about living with a facial difference and being disabled. It has stories of my life until now, anecdotes from other people, and advice for engaging with people with facial differences, severe skin conditions and disability.
‘From reading the book, I want people to be confident in their own skin – no matter how different it might be, and to remember their manners when talking to someone people with facial differences, severe skin conditions and disability.
‘I’ve loved receiving messages from people with Ichthyosis (the rare severe skin condition I have), telling me they felt alone until they read my work.’
‘I used to work on breakfast radio every morning on triple j and I’d wake up at 4.30 and leave the house when it was really dark and no one was out. But there’d be an old lady that slept out the front of our apartment door. She was there every day for a year.
‘It was kind of weird as I would always ask her if she needed anything but there was always a disconnect between her and myself. I guess that comes down to communication and what I can offer someone in that situation.
‘It’s not just money – it’s a blanket or do you need a phone call, or an OPAL card? Do you need a shower or do you need to use the bathroom? It’s those things. Taking part in the Newtopian Sleepout is definitely opening my eyes up to everything.
‘I’ve learnt a lot about homelessness so far – about how prevalent it is and how difficult it is to get out of the system. So many Australians, and I have as well, get caught up in this mind-set that we have Centrelink, why don’t you just get the dole, you know? You never really understand the complexity of any issue until you place yourself within that community. Not that I’m necessarily doing that just by sleeping in Newtown Square for one night but certainly just by being a part of this program I’ve learnt a lot more about homelessness. It’s made me more aware of what I can do as an individual in everyday circumstances that I will now be more aware of.
‘The thought of homelessness is terrifying. There are so many things that life could throw at you in any situation. I guess we all have our time at being “the one” at one stage or another and for now everything is good in my life and that’s why I’ll help out while I can.’
‘It’s really important to accept that there are differences between us but those differences aren’t an obstacle; they’re actually a way of helping us connect. Just because we are different and we come from different backgrounds doesn’t mean we can’t combine our energy, skills and experiences for the benefit of everybody.
‘Everybody’s got something to contribute. You’ve just got to find a way of helping that person contribute. Be open to engaging with people. All you have to do is talk to them – just a conversation. That spark can take a person anywhere.’
‘I have Stage IV cancer – it’s under control at the moment. I value every moment. I value the time I’ve got. I value friends and just the beauty of the world around me. You don’t have to go out in to the countryside to see beauty. There’s beauty here. There’s beauty everywhere. I seem to notice it more. I notice things more now. I don’t need to do spectacular things. I get pleasure out of very simple things in life.’
If you would give your ten year old self words of wisdom, what would they be?
‘I can’t remember when I was ten. I think I was a rebel then and I’m a rebel now. I would have said, “Keep it up kid!”’
‘In the last few months of her life she aged 20 years in two months. It was really hard to see her deteriorate like that and not be able to do something about it. My mum battled different cancers for 10 years. She beat it twice and then it returned as a metastisised cancer in 2012 and was considered terminal. She was on a trial medication for around a year that had similar effects to chemo. That did slow things down but in the end it was just a slow deterioration. I think that’s the really horribly fascinating part of it is the way that it begins so innocuously. In the beginning it’s just a bit of pain and you almost wouldn’t even know there is too much wrong but then it’s like a slippery slope.
‘I was 23 when she passed. It was traumatic – the hardest thing I’ve ever gone through. In a way I think that I kind of died that day with her and a new me was born. I really feel fundamentally different from the day before that.
‘Starting Busk for a Cure was a way to fill some sort of existential purpose as I was slowly watching my mum pass away from cancer. I love busking – it’s one of my favourite things to do. It’s so humbling and nobody ever needs to stop and listen or give you any money yet they do. I think there’s something so pure about it because you know they’re giving purely because they like your music – there’s no ulterior motive.
‘I know my mum would be proud. I just wish I could show her who I am now.’