I’m a Kalkadoon Wangi man, an Indigenous health worker, I'm gay, and in late 2016 I tested positive for HIV.
When I got the results, I asked the doctor if any HIV positive Indigenous health workers worked at the service. Thankfully, there was one, and we talked about what his life had been like since diagnosis. I asked, "Who will love me now that I’m poisonous?" He told me that he had been married for 12 years. This gave me hope. I realised it is important to have an Indigenous peer for support: the sameness, and the lived experience of being Indigenous; someone who understands our history and the intergenerational trauma of our people.
Three months after being diagnosed, I too was asked to consider a role as a “peer” by many people in the community. After much prayer and reflection, I went to the office of an HIV organisation in Cairns to speak with the facilitator. As if through synchronicity, he was talking with a young Indigenous man who was newly diagnosed. I knew him from a drug and alcohol rehabilitation centre that I worked at. I disclosed to him my diagnosis, and he cried. He screamed and ran into my arms, so happy to see me. He was sobbing uncontrollably, and he asked the worker to leave him to talk to his brother - me. We sat and he started to disclose everything that had happened in the last two years since I had seen him. Within minutes I had him in fits of laughter.
In that moment I knew that this was my new purpose in life: to help relieve the pain and suffering of Indigenous people who are living with HIV. HIV has given me a new way to be of service to others and for that I am truly grateful.
But not long after, I started to see the gaps. The HIV organisations were not open to listening to my lived experience as an Indigenous man, and didn’t understand the history and cultural differences or the impact of colonisation. This felt like a tokenistic role. I left the position after a year.
I experienced another blow in a different organisation, and I felt like I was being silenced. My negative experiences with these organisations really shook my belief that they were there to support us.
It takes a different skill set to work with people with HIV, than it does to set up an event. You can’t just wrap everything in rainbows and sprinkle it with glitter and expect everything to be okay.
People label the passion and urgency in my voice as aggression, so they then don’t have to address the issues.
I talk about my experience at health conferences. I've researched other Indigenous HIV positive people, and their stories from 20+ years ago. They were saying the same thing. We are not being listened to. No one is providing a space for us.
I started to see the statistics of Indigenous peoples all over the world. It was terrifying. The stats show that the Aboriginal and Torres Strait Islander population is at 2.6 times higher risk of acquiring HIV then non-Indigenous people, and it’s rising. I started to travel to remote Indigenous community services to speak with Indigenous health professionals, nurses and doctors about HIV and Indigenous people, and to tell them that HIV diagnosis is on the rise with in our communities.
Last year I received a call from the Australasian Society for HIV, Viral Hepatitis and Sexual Health Medicine (ASHM) to inform me that I had been nominated for a special recognition award for emerging leaders, and would have to travel to Sydney and do a presentation on the work I had been doing. A day before I travelled, I was told that I wouldn’t be speaking after all, as there wasn’t time. Apparently, someone from my work place had spoken to ASHM, telling them not to let me speak as they would not like what I had to say.
What I intended to say was: “You are not going to end HIV unless you support the Indigenous people.”
I feel that I’m not being heard. People label the passion and urgency in my voice as aggression, so they then don’t have to address the issues.
The gap is widening in health care. We need culturally appropriate services. Men talking about men’s business and women talking about women’s business. I can’t speak for a woman; I don’t have the lived experience.
Start with a reconciliation action plan, seek out our input. Provide the space. Funding for services – specifically Indigenous HIV case management programs and peer support, by the people, for the people. Quality health care is a basic human right.
I’m doing my best to support Indigenous people living with HIV, but I need your help.
