Ayman Barbaresco, who passed away in June this year from ongoing medical complications, was a passionate advocate for people living with special needs. He was a long-standing volunteer for many organisations, including Switchboard, Thorne Harbour Health, Drummond Street Services and Queer Space. For many years, Ayman worked with Switchboard as a volunteer on the phones, before joining the organisation’s board and becoming a member of Switchboard’s community engagement committee. Friend, writer and Bent Street contributor Daniel Witthaus wrote in June, ‘I had the honour of holding Ayman’s hand during the last few weeks, and I did my best to let him know that an entire community would’ve gladly taken my place.’
The following article by Ayman was included in Living and Loving in Diversity (chief editor Maria Pallotta-Chiarolli, published by AGMC (Australian LGBTIQ Multicultural Council) with Wakefield Press).
‘When life gives you lemons, you just want to squeeze them and make lemonade!’ Well in my life, I have been given many lemons and am still squeezing them.
You see, I was born with a neurological disorder called Neurofibromatosis Type 1 (NF1) and this was the start of a life that has always, still is and will always involve many doctor appointments, MRI scans, blood tests and the list goes on.
I was born on Tuesday 14 February 1989 at 2.01pm (yes I am a Valentine’s baby) in Sydney, Australia, to an Italian mother and Middle Eastern Father. I am the youngest of two. My brother is three-and-a-half years older than me. For the first two years of my life, we lived in Burwood, Sydney, and then moved to the north coast of NSW to the beachside town of Coffs Harbour. I went to a public primary school and three high schools, one public, one co-educational private and then a senior college for years 11 and 12.
For me, growing up in a regional town had mixed emotions. I mean, I couldn’t choose where I lived but I had many mixed experiences and that wasn’t just during my schooling years. The biggest thing that impacted me was my identity. Growing up, especially having a disability and being sick as a child, was confronting. I was always picked on at school because I was different. I was the odd sheep amongst the crowd.
Part of my condition in having NF1, you are diagnosed with numerous tumours. My first brain tumour was diagnosed on my third birthday. This tumour sat on my brain stem and was inoperable and I had less than 20 per cent chance of survival. My doctors and specialists trialled a new regime of drugs. I was given extreme doses of chemotherapy and radiotherapy and it eradicated the tumour. As I write this story I am 23 years in remission and am damn well proud of where I have come from and where I have been.
Growing up, my father was never really around. This made it very difficult for my mum who was trying to look after me, deal with my treatments and brain tumour as well as raise my older brother. Thankfully we had the beautiful and amazing support of my maternal grandparents who were there every step of the way and provided that much-needed support. For treatment, my mum and I would travel to Sydney with Ansett Airlines (yes that shows my age) every six weeks for an average of eight weeks. This process went on for almost two years. Even after I was given the all-clear, mum and I would still spend many months travelling to Sydney for follow-up appointments, scans and tests.
Despite being sick and not really having a childhood, there were still many happy memories of my time in and out of hospital. I remember flying with Ansett in the 1990s and being lucky enough to be taken up to the cockpit and see the pilots fly the plane. This is a privilege that kids who are growing up today don’t get to experience and I feel pretty special.
Another great part was staying at Ronald McDonald House in Camperdown, NSW (now Westmead). This amazing organisation provides a home-away-from-home for seriously ill children and their families who are more than 100km away from their family unit. The atmosphere created within this house is truly remarkable and special. The bond that families have within these houses is special and because of the amazing support I received as a kid, this is one organisation that will always be in my heart. As I write this story, they are also one of the organisations that I volunteer for.
To date, I still live with many ongoing medical complications. I was diagnosed with scoliosis at the age of 12, diagnosed with my second brain tumour in 2012, and my third in 2016, and I know that my medical journey hasn’t ended. The roller coaster is still running. I am a little uncertain of where it will take me but I keep living my life, I keep being myself and having fun.
If my medical condition and everything I was going through wasn’t enough, my sexuality came into play in 2001 when I was 12 years old. I realised that I was gay. I liked guys. A lot of people ask me how I came to terms with my sexuality and for me, it was nothing. It was just another part of me. I mean, I have overcome childhood cancer and dealing with scoliosis, so my attitude was ‘so what if I am gay’.
Throughout my work in the LGBTI community, I have heard many coming out stories. I have three different coming out stories. My first one was in 2001. I remember it was a Saturday afternoon when I walked up the stairs of the family home. My mum was in the lounge room and I said to her, ‘Mum, I’ve got something to tell you. I’m gay.’ And Mum says, ‘I always knew’ and gave me the biggest hug.
My second one was to my best friend in high school. I was in year eight at a Catholic co-educational school. Not long after, I was bed-ridden due to my scoliosis, so I was stuck at home watching TV and not doing a lot. After that three-month bed stint, I returned to school where I had been outed by my best friend. He told everyone in my year and people at my old high school also found out.
My third coming out story is to my dad. I came out to him in 2004 when I was 15. See, my mum and dad divorced in 1996. When I came out to him, he told me, ‘No, you’re normal, you’re going to have a wife and kids.’ That was quite confronting for me. I thought my dad would’ve accepted me for who I am but in looking at it and knowing what I know now, because he is from a Muslim background, it was quite confronting and challenging. In saying this, just the other week (June 2017) he phoned me said, ‘I don’t care that you’re gay, I just want you to be happy.’ He has accepted me 13 years later and that’s quite nice to have some form of closure.
For me, growing up in a regional town and being gay was quite difficult. I had very little support and there was nothing around when I was growing up. We had a couple of services and groups that met, but after a while, it was the same people doing the same thing and got quite boring. There were very little support services online and I had a counsellor who was ok but not the best.
Young people these days are so much luckier than when I was coming out with all of the support services they have access to. There are online chat platforms and discussion groups, in Melbourne there are organisations like Minus 18, JOY 94.9, Headspace, Switchboard and the Victorian AIDS Council just to name a few. I had none of that. Yes, there’s still the gay hate, which is horrible to see. And I still hear stories of kids being thrown out of home for being gay. I mean, who cares who you love? Whether you’re gay, bi, trans, straight or you’re asexual. So long as you love someone for who they are in the heart and not for what’s between the legs, that’s what matters. I think given enough time we will get there. I think whatever your sexuality is, your gender, whether you have a disability, you’re from the deaf community, you’re yellow, black, brown, whether you’re male, female, or somewhere in between, the main thing I want people to do is to be themselves, have fun and enjoy the ride. Because you never know where life will take you.
And there’s still this whole misconception that people with a disability don’t or can’t have sex. So where do you go with that? I’ve been single my whole life, I’ve never had a boyfriend and I find that challenging, especially being gay with a disability, because there’s this dominant perception in the gay community that you have to look a certain way, you have to act a certain way. Why is it that as a minority we victimise and reject a minority within a minority? You can’t be 147 centimetres of energy like I am, you have to be six foot tall, dark and handsome with a gym-toned body. You have to be this Prince Charming. But what’s wrong with someone who has a little character? I have a goddam awesome personality and a contagious sense of humour. Did I mention that I have an infectious smile? Who cares if they have a few kilos and they don’t look like Prince Charming? I may not be who you expect (or want) me to be but spend just five minutes with me and you will find that I am just like that guy you swiped right. I am just like that guy you woofed at. My disability will not leave me. It will be by my side, as I lie beside you. I can’t become someone else who will meet the ‘gay hook up’ checklist requirements that we all have in the back of our heads, because my disability won’t let me. Nine times out of ten, I’ve had to pay for sex and that takes a lot of guts to acknowledge. The thing that I would love the most is intimacy. It’s not necessarily about the sex but it’s more about the cuddling and the intimate connection that I would love. My bed gets very cold during the long Melbourne winter.
In the 28 years I’ve been on the planet, I look at it as I’m healthy, I’m happy, I’m living a life that I never thought I would live, ever. I’m breathing, I feed myself, I clothe myself, I don’t rely on anything or anyone to keep me alive. I’m so damn lucky! I’m a big believer that because I’ve gone through so much shit in my life, there must be a reason. There must be some underlying thing that’s keeping me here. Life is what you make of it.
The main thing that I want you to know is that you should always be yourself, have fun and enjoy the ride, because you never know where the path will take you.
Article reprinted from Living and Loving in Diversity: an anthology of Australian multicultural queer adventures. The book is an anthology of personal stories on queer multicultural multifaith Australia, with more than sixty voices from across the spectrum of sexualities and genders, families and relationships. All royalties go to AGMC to continue its work.