‘I actually feel quite guilty because I’m having such a great time travelling around, living in my car and meeting all these lovely people. Everybody who stops to talk to me is a nice person. Not all the nice people stop. Sometimes they don’t feel comfortable approaching someone sitting on the street and some of them are busy and that’s fine.
‘I try to make sure that people know that I’m alright. I actually make enough money selling my scarves to get by.
‘One thing that’s changed over the years is that we’ve become more of a cashless society. I’m thinking of going to Officeworks and seeing if I can get one of those portable EFTPOS machines but I have to upgrade my phone. That’s my problem. I’ve got a stupid phone – all it does is make and receive phone calls and send texts.
‘It’s alright though. One of the things I do is I’ll suss out if there is an ATM around the corner. That also gives them a bit of a cooling off time.
‘I’ve actually said no to a couple of people because I can see it in their eyes, they’re buying a scarf out of pity and I don’t want that. Their scarf will be put in a drawer and not worn and not loved. I want people to wear them and enjoy them. If they’ve got to walk 20-30 yards and go to an ATM and get money and come back that gives them thinking time and they might think, ah, I don’t want that and they can walk the other way and not have to walk past me again.’
‘I started transitioning when I was 17 – it’s been about 5 years. I grew up on the Central Coast which has a very low trans population. There was probably me and someone else that was known for it in the gay community. Even the gay scene was really low so it was pretty bad.
‘I went to a Catholic School as well. I came out as a lesbian when I was 14 at the school which was not my best choice. I dropped out of high school because I went in to hospital for mental health reasons when I was about 17. And then I decided I needed to transition to a man and start doing the right thing for myself. There were a lot of members of my family who were quite actively not alright with it.
‘It sounds really weird but I didn’t think she [my partner] knew that I was trans because it wasn’t brought up. From the very beginning, there was no issue whatsoever. We’ve never had a problem with that. But on the Coast it was always something that was raised; there were always people talking about it.
‘When we met, she just didn’t give a second thought to being eccentric which helped lessen the anxiety about how people looked at me or how I behaved. Was I feminine or masculine enough? None of her friendship group even addresses that. They’re all so confident. I think her confidence has really rubbed off on me.’
‘It’s a tough place to work but a very positive place even though there is this concentration of grief. I hope to bring to someone like Maria, something that she would get in no other hospital which is that support and that love which comes in many forms – kindness, compassion, support and lot of things we take for granted – like our art programs.
‘The fact that she can just wheel herself down and play on the piano or join in on what everybody else is doing – listening to the music and the choirs. It’s like its own little world here – a world of kindness and hope if you like.
‘I think that’s what I bring because I’m a reminder of what Chris went through and what we as a family went through and so I totally understand what everyone else is going through.
‘My role as Patient Advocate is a way of supporting the vision which is patient-centred care and giving people hope.’
‘When I threatened to move out, she would always say to me, “If you move out you’re not part of the family anymore”. At the start she said she’d disowned me. She didn’t talk to me at first. It was really messy. There were a lot of words and anger but she also grew up in a war zone and her family wasn’t the most affectionate. So I don’t really hold that against her. I understand her reaction and I expected it. She always threatened to do that and she did it in the end.
“I moved out of home last year and in Arab, but also Iraqi families in particular, that’s a really big no-no. I went through a period where my family’s relationship, until now, became very fraught because of that. It’s seen as betrayal to the family. The culture is rooted in family and you can’t break it up until you’re married and you have your own family.
“My family’s quite conservative and I just didn’t fit there anymore. I couldn’t really see myself growing as a person. I had to sensor my thoughts a lot and I didn’t want to live like that. As soon as I saw the opportunity to move I did it.
“It’s definitely a clash of culture. I’m a writer and I guess that’s also what my writing’s about – the relationship between first generation immigrants like my mum who came here in adulthood and their kids who came up here being Australian with different values.”
‘I was asked to be the voice of Hubert in the eBook called “I Didn’t Like Hubert”. We made the eBook to raise the funds for the Humpty Dumpty Foundation so they can buy life-saving equipment for sick babies in hospitals.
‘Hubert is full of life and full of energy. I’m not sure what age he is but he is a young child. He has the most amazing imagination ever. He uses his imagination to create incredible adventures. When I was a you ng child I would have loved to hang out with him and visit his make-believe world. But the other kids don’t seem to see just how cool and full of life he is. The other kids in the story seem to think he is weird because he dresses differently and has his crazy hat and a pet rat. But one day one of the kids notices just how much fun is Hubert is having and begins to change her mind about Hubert.
‘I feel a connection with the character Hubert and there’s a story to it. I love the fact that Hubert has big dreams because I always dreamt of being an actor. I am lucky to be living my dream. Hubert gets to play all these different, funny characters when he is playing his imaginary games. And with my acting I get to play different characters when I am acting. I feel for Hubert when the kids say unkind things to him. I have had times when people have said unkind and not very polite things to me and it has made me sad but then I remember I am living my dream of being an actor and have been involved in fabulous projects and have worked with amazing actors and directors from around the world. I am proud of my achievements and I don’t worry about the things they have said to me anyway.
‘I think the themes in this story are something that everyone can relate to – young and old. Children are very clever and I know that they will understand one of the main messages of “I Didn’t Like Hubert” that being different is OK. Don’t be afraid to go out of your comfort zone and try something new. You may surprise yourself with how much fun you have!’
‘We try to make really positive upbeat music so we can share good energy with people. We never intended it to be like that but the feedback that we started getting when we started performing goated us in to really creating a safe positive space through our music so people could express themselves openly and not worry about things that don’t really matter.
‘We just want people to feel like they’re either in love or they are loved and that they can express that love through dancing or singing along or just being a part of a group of people who are focused on the same thing.
‘In society as it is, it’s almost like built-in to be shy and to watch yourself, but the fact is that we’re all on the same planet. It sounds so cheesy and I know people have said it in more elegant ways but we’re like one consciousness and we should stop and experience that together sometimes. Music is our language of doing that but you can see that in art or theatre or anything. We just choose to bring people to that realisation through music.
‘I’m part of a 12-piece hip hop soul funk band called The Regime who get pretty active in the Inner West. If we’re not gigging, we’re busking.’
‘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.’
‘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.’
‘As long as I can remember I’ve seen people cry and grieve and celebrate life by singing and dancing in the name of a person’s life.
‘I’m Tokelauan Fijian – my mother’s Tokelauan and my father’s Fijian. Both sides have quit similar mourning processes but on my Fijian side the whole mourning process is 100 days. On my Tokelauan side it’s 10 days.
‘I found out my nanna passed away when I was 17 and I was on a plane from Australia and thrown in to 2 weeks of planning, organising, crying, cooking, singing, dancing, praying with my family from 7am to 4am, 10 days in a row.
‘Sitting with her body and my family for ten days – actually sitting and talking to her and holding her and seeing that it was real; there was no tangible life left in her – that really helped me.
‘In my mother’s culture, when you begin the mourning process you have these things called Leos – each community or family member that’s connected to the person who’s passed away will come together with their family and present to the immediate family of the person who’s passed away gifts, prayer and song.
‘So many people came to my nanna – it was leo after leo after leo. Each time we did a leo, I grieved again – even when I thought I had nothing left in me.
‘If you know the songs and dance, you get up and join in – even if it’s not your family. The power of the call of community and the call to celebrate was so revealing for me because it was really my community and my family saying you’re not alone.
‘Going through that entire experience really slapped me in the face because it taught me about the importance of sitting with death and sharing your grief. It also taught me the importance of celebration for a person’s life.
‘You share everything throughout the process – there is no hiding; there is quite literally nowhere to go away and just be private. It can be very overwhelming too but I personally found a lot of comfort in it.’