This is an adaptation of an article written by Jesse Hooper that was submitted and included in the NAPWHA special publication “Through our eyes” marking the 30 year history of HIV in Australia.
I reflect on those that came before us. Those that fought for the rights that People Living with HIV (PLHIV) have today. I reflect on those that lived openly with their status to better the lives of PLHIV today. I consider myself incredibly lucky, and I am eternally grateful for those that came and went before me, they are my heroes in the fight against stigma and discrimination. Without their selflessness, courage and passion I would not be doing the work that I am doing today.
Arguably, there is no stronger way of delivering a message, of getting a point across than through a story. I am a passionate believer that through sharing the lived experience of living with HIV we are ultimately taking HIV out of the closet and humanising it. I believe that the more we humanise HIV the less stigma and discrimination we will face. This is the reason that I have chosen to live openly with HIV, and that I am a supporter of any project that allows the HIV positive community to share our unique and powerful stories.
I was diagnosed in mid-2009 at the age of 21. I think I dealt with it okay in the beginning. I told friends and family relatively quickly. I think most people in my life knew within a matter of months. I wear my heart on my sleeve and I’m not afraid to face things head on. HIV was no different. I’m not suggesting I wasn’t devastated by the news – of course I was. Whilst it was pretty hard in the beginning, I decided relatively quickly that I wasn’t going to be defeated by HIV. I was going to use HIV as an opportunity to make a difference, that I would live openly, and without shame.
Having grown up a very independent person I thought that I was pretty resilient and was used to dealing with life’s challenges on my own. I did however become involved with Queensland Positive People (QPP) and the Queensland Positive Speakers Bureau (QBSB) early in 2011. I initially came into contact with QPP in support of a friend that had just been diagnosed. Given I was still new to the world of HIV I thought we could attend the recently diagnosed workshop together. Instantly I felt so connected to the organisation. Just being able to share my experiences with people that could relate to what it was like to be HIV positive was an amazing and empowering experience. I remember saying to my friend after our first engagement with the organisation that I was to develop a new career path… Supporting the positive community is what I wanted to do.
In June of 2011, I was appointed as the Youth Representative of the Australian Delegation to the High Level Meeting on HIV/AIDS at the United Nations Headquarters in New York City. This presented me with an amazing opportunity to represent young people living with HIV in Australia. I was able to meet likeminded young people from around the world who shared the same passion I have for addressing the stigma and discrimination still so prevalent in our communities. I came back to Australia more passionate and more inspired than ever before. As a result of attending this meeting, I felt empowered to run for the QPP board of directors at the end of 2011, where I was successful in gaining a position. I sat on the board of directors for a year and half before l resigned to accept an operational role within the organisation.
My first experience of publically sharing my story came in “Positive…. is that good?” A collection of thirteen stories written by HIV positive gay men in Queensland. Despite all of the stories being written by gay men, there is still clear diversity across the pages. This highlights that HIV is a personal journey and that no two journeys living with HIV are the same. The stories were also shared through the gay press here in Queensland.
Following this I participated in a couple of short documentary style films, “I Never Chose This” and “Infectious Personalities”. Both of these films provide information about HIV as well as demonstrating HIV stigma and discrimination, backed up by the lived experience of PLHIV. I also recently participated in another public awareness campaign with the HIV Foundation Queensland (HIVFQ, “There’s something I want to tell you”.
Whilst I have done some very public work talking openly about my journey living with HIV – I think the most rewarding things I have experienced have been since being appointed to the position of Peer Support and Communications Officer with Queensland Positive People in 2013. Working with the HIV community has had the most profound and positive impact for me personally. Being able to support PLHIV, whether that is someone going through a diagnosis or someone that has been living long-term with HIV. Giving people the information and the tools they need for their journeys gives me the best feeling, and is something I am incredibly proud to be able to offer the community.
The first major project I worked on since being employed with QPP is the “Talking About HIV” campaign, which was launched in December 2013. I wanted to support other PLHIV in sharing their stories in whatever capacity they feel comfortable to do so. I was fortunate enough to find a diverse group of people that where either living with HIV, or HIV had had an impact on their lives. Talking About HIV is a series of short films addressing the lived experiences of people living with and affected by HIV. It is a starting point to initiate conversations about HIV with family and friends. Too often we hear that people choose not to test because of the fear of receiving a positive result. This demonstrates the importance of humanizing HIV. Removing the fear of testing, and removing the fear of a positive result. Knowledge is power, and that is no different for knowing your HIV status.
All of this demonstrates to me the fundamental meaning of MIPA (the Meaningful Involvement of People living with HIV). As a young person living with HIV I was supported and empowered to be involved in conversations that affected me as a young person living with HIV. Now that I sit in an operational role in the sector, I want to pay this forward, and hopefully empower other people to come forward and share their stories. This is Poz Action in action.
MIPA is our call to action – Nothing about us without us
