Sebastian Zagarella is an artist, a Positive Life Board Director, and finally comfortable about living with HIV.
I sero-converted back in 2003 and at the time I was very clear in my own mind, I didn’t want to be defined by HIV. I just didn’t want to talk about it and I certainly didn’t tell a lot of people in my life. So, for the first six years, it was just me dealing with it pretty much on my own.
With a background in Visual Arts, I’d ’d graduated from the Sydney College of the Arts in the early 90’s. Over time I began to think about how I could try and visualise what I was feeling about the virus and some of the things I’d experienced as a result of it; and from about 2010 started working on what was to become my installation, Inside/Out (2015).
Around 2014, I met Craig Cooper, CEO of Positive Life and Jane Costello who was the President on the Board of Positive Life at the time. As people living with HIV themselves, they were both really supportive of the installation and of me. This was the first time I’d really ever reached out to people in such an open way, and we had some really normalising, open conversations about my work and my status. It helped me normalise things in a way I’d hadn’t felt before and I started to realise how important it was to have open dialogue around HIV.
The installation was to become my very public Coming Out. It was also my way of letting go of fear and shame and just being okay with it. If it sounds like I had no second thoughts or sleepless 3am pangs of fear that kept me second guessing myself and wondering ‘what if…’, far from it! I remember thinking; What’s this going to mean for my family? Will my friends look at me differently? What will happen with colleagues? All those feelings rushed to the surface and they were real and scary!
These thoughts crossed my mind up to the opening night of the show. I still had the thoughts; this is too big to handle, I should just pull out, this is no one else’s business, why would anyone care? Still, there was an inherent part of me that knew it was important for me to do this. I wanted to reclaim myself, my whole self. I’d been hiding a piece of myself for a very long time and I was done with that.
When I started disclosing to friends and colleagues, I realised very quickly I’d been doing them a disservice by hiding. I’d actually shared less of myself with my friends over the last six years by keeping my diagnosis a huge secret. The one thing my friends felt upset about was that I’d not been truthful with them or trusted them to know ‘my secret’.
Once the installation was out there, I was really surprised how many people opened up to me about their own status. I found total strangers revealing their HIV status. I also received emails from people who has been to see the installation to thank me and to let me know they had finally come out to friends and family as a result of meeting me and visiting the installation. It was so humbling to know my work had been a part in making people own their own experience and feeling empowered, rather than being ashamed or worried about implications of being open about HIV.
I also found the more I spoke about it, the more I normalised it for myself and others. Even people who knew nothing about HIV, seemed really open to just ask questions and we had conversations they would never normally have. I found most people, regardless of their status, connected to the work as a ‘life-defining’ moment; and with experiences that have been left unspoken.
Nowadays, I make a point of being open and speaking up about what is often left hidden or unspoken. Everyone has their own journey in this process. Now I’ve been through it, I understand the power and strength that comes from being courageous. It feels very liberating when you can unshackle yourself from your secrets. I guess that’s what led me to be on the Positive Life Board.
Being a Board Director has been a weird experience. When I first joined 12 months ago I felt a great sense of responsibility to help make decisions for the wider community of people living with HIV, at least 10,000 of us across the state of NSW but I also wondered how I was going to be useful to Pos Life. Over the past twelve months, I’ve realised that I have a range of skills gained through my professional and personal lives experiences of HIV that do allow me to contribute in my own way within the wider group that makes up the Board. I have more understanding how I can influence decisions being made about and for people living with HIV; and learning more and more about our community and issues that impact it.
Through interacting with the wider HIV community its only reinforced the importance of the peer-to-peer experience and how vital that is. We hear people talking about HIV all the time but it’s usually conversations they have with their doctors or health professionals, and I’ve come to understand how important it is to be sharing personal stories and allow others to share theirs.
I guess if anything, my call is to get in the driver’s seat of your own life and be open about your experiences. Step up and be yourself without hesitation. I believe everyone has a role to play in ridding ourselves of the shame and secrecy of the virus. The only way to do this by talking about it and normalising it. I still know a lot or people who don’t like to talk about it. To them I’d say you’ll be surprised at the support and understanding that comes your way.
Finally I guess I’d like to encourage anyone, even with only a passing or remote interest in finding out more about getting involved with the community or being on the Board as a person living with HIV, or just want to understand more about Positive Life, to come and talk to us.
To get in touch with a member of the Board, call the office during business hours on (02) 9206 2177, 1800 245 677 (freecall) or email firstname.lastname@example.org