NAIDOC Week: 50 Years of Deadly

“I’ve been living with HIV for 34 years. I’m a mother of two daughters, I’ve got six beautiful grandchildren, and I’ve been with my partner for 18 years—he’s HIV-negative. I grew up in a small country town and moved to Melbourne chasing the city lights. But it wasn’t just the lights—I ended up getting into drugs at a very early age.”

Michelle sat in the corner of a hotel restaurant that day. With a fresh cup of coffee in hand, she reflected on the many rites of passage she’s lived through: a youth full of adventure, hard years in the trenches, and rising to become one of the key voices for Aboriginal and Torres Strait Islander communities living with HIV.

“I ended up moving in with a dear friend whose brother was HIV positive. Shortly after I had my baby, we developed feelings for each other and got into a relationship,” she said. “I knew nothing about HIV at the time. We used protection, but we didn’t know that pre-cum could transmit HIV. When I got tested at the same hospital he went to, I didn’t realise I was seroconverting.”

She was referring to the stage when the body starts to respond to HIV infection.

“I remember having a really bad flu at the time.

“The whole hospital rallied around me. I remember walking back to see my husband to tell him I had HIV. I thought to myself, there’s no point crying over spilt milk,” Michelle added. “Six months later, I told my family. I didn’t get the best response, but it didn’t stop me living my life.” Two years later, Michelle’s husband passed away after becoming seriously ill. “It was really hard, you know? ‘Til death do us part, you know?”

Her voice cracked, eyes welling with tears as she spoke about her late husband.

Eventually, Michelle moved to South Australia and met a new partner.

“I was pregnant at the time, and I got so much help from doctors who made it possible for me to have a baby without passing on HIV. I wasn’t even on treatment then. I was also experiencing a lot of domestic violence, and thankfully the community helped me get out of town to somewhere safer,” she said. “I thought I had no support. My family didn’t back me. I had nothing—but the community came through and helped me and my kids get to safety.

“When I moved back to Melbourne, I started visiting schools to talk about HIV. There weren’t any Aboriginal women speaking publicly about living with HIV at the time.” Through that advocacy work, Michelle connected with other Indigenous Australians living with HIV. Thinking back to dating, she recalled: “Men didn’t believe I had HIV. Everyone thought it was just a gay man’s disease. They just didn’t seem to care.”

She eventually met her current partner, and they’ve been together for the past 18 years.

“I was hesitant to formally join the positive movement, but as a positive Aboriginal woman, I felt a responsibility to represent my community. I stand on the shoulders of so many who paved the way for me. I want others to be included in that journey too—to learn and grow with me. We still have a long way to go when it comes to respecting our culture and adapting HIV resources for our communities. We’re still being left behind.

“Our communities experience higher rates of HIV, but there’s little to no funding for us. That’s what drives me to keep showing up. Because if there’s one thing about HIV—it affects everybody. It’s not just the individual living with HIV; it’s also about supporting families and communities. That’s why I’m out there. I want to listen to other positive Indigenous folks. I want to teach people the power of sharing your story—because change often starts with conversation.”

Michelle continues to speak out because she knows she’s not doing it alone. She’s supported by her partner, her family, and her community. She reminds us that HIV is not just a personal issue— it’s a shared one, with wide-reaching impact.

As someone ageing with HIV and dealing with the long-term effects of early treatments, Michelle reflected:

“I’ve had the broader community show up for me as I go through different health challenges. Supporting others through the health system taught me how to navigate it myself. It was really hard. I almost gave up. But I think about my children, my partner, and the Aboriginal community I represent. They’re why I keep going every day. I can’t walk away from this work just yet,” she said.

“I’m needed.”

“I kinda knew,” Jacob says as he sips his tea. “I kinda knew, but I’d just been putting it off.”

Jacob was diagnosed in 1998. He was a 24-year-old dance student at NAISDA and was running late to class when one of the traditional dance teachers from Turkey Creek—an Aunty, as he warmly refers to her—stopped him before class. “She sings over me, wipes her underarm sweat on me, and tells me, ‘You need to see a Western doctor. Everything’s red.’

“Once I got diagnosed, it felt like a self-fulfilling prophecy… As someone who was very sexually active from a young age, there was a part of me that felt like getting HIV was a normal part of a gay man’s life. That’s what society taught us back then.” Jacob recalls seeing the traumatising Grim Reaper ad on TV in the ’80s. “The shame started creeping in shortly after the diagnosis. It just reinforced this victim mentality I’ve always struggled with—being Black, being gay, being HIV-positive. I had to constantly remind myself that I have agency.

“I had so many questions about treatment—I knew nothing. I just remember the doctor asking if I wanted to live another ten years. Hearing that made me submit. I said, ‘Okay, give me the pills.’” Thinking back to dance school, he adds, “I used to have so much stamina, but as soon as I started treatment, I just felt sick all the time, so I stopped.”

He pulls the warm tea closer. “I didn’t tell anyone. I didn’t go back on treatment until 2006—when I had 60 T-cells left.” Referring to the state of his immune system, he says, “My doctor told me he’d stop seeing me if I didn’t start treatment. He didn’t want to be responsible for someone developing AIDS-defining illnesses. So, I’ve been on treatment ever since.

“The first person I told was the dance principal at the time,” Jacob shares. “One of our teachers had lived through the height of the AIDS epidemic and would tell us stories during class. I knew he was someone I could trust.

“I called him and said I couldn’t come in. He asked what was going on, and I said, ‘I came back positive.’ That was all I could say. He met me in the park and we had a chat. I don’t remember much, but I remember him saying, ‘Things are different now. You are going to die—just not today. Everything’s going to be okay.’

“It took me a month after that to tell my mum,” Jacob recalls. “It was over the phone. Maybe you could call it mother’s intuition— she knew something was up. She coaxed it out of me, and I just burst into tears. I told her in between sobs, and all I could hear was her saying, ‘It’s okay, love. Just tell me what it is—it’s going to be okay.’”

Jacob’s voice softens. “My mum being my mum, she told everyone in the family. I had to tell her, ‘This isn’t yours to tell.’ We had a big fight. But once that settled, my family just surrounded me with love. They said, ‘We just don’t want you to die. We love you.’ I was in a love sandwich. And that love sandwich helped me through the years.

“Since then, I wouldn’t say telling people I’m HIV-positive has been hard. It’s just been on a need-to-know basis. Once I worked through my own thinking—not necessarily being proud of being positive, but integrating it into the rest of who I am—I learned to love myself, all of me.”

That love sandwich helped inspire Jacob’s performance work Blood on the Dance Floor. “All I saw in theatre at the time was stories about sex and death. Nothing reflected First Nations voices. But I knew there were stories of joy, love. And I wanted part of my legacy to be that: about love.”