Stories
Born to survive – PWV Chair Stephanie Raper key note speech from the 2025 AIDS Candlelight Memorial
04/06/2025
Stephanie’s key note speech was published as a feature article in Positive Living digital (published by NAPWHA)
Stephanie has lived with HIV all her life. When she spoke with so much passion at the recent AIDS Candlelight Memorial in Melbourne, it was to others who have also survived, while honouring those who haven’t.
It was Dan Savage who summed up the darkest days of the AIDS crisis: “We buried our friends in the morning, we protested in the afternoon, and we danced all night. The dance kept us in the fight because it was the dance we were fighting for.”
My name is Stephanie and I survived. Having been born with HIV in 1991, I have witnessed my community come together in grief my whole life.
Children with HIV released balloons, lit candles, sung, cried, but most heroic of all, laughed.
It was my childhood best friend who shouted during a grief group: “Why is nobody dancing?” It made me wonder why we ever stopped to grieve. It was the next year I was grieving her; another pause to the laughing and dancing. At her funeral everyone pretended she had cancer, even handing out cancer donation boxes to sell the lie. I miss her dance moves. I miss her laugh. I miss my friend.
What an honour it was to speak at the 40th anniversary of the Candlelight Memorial. The theme was “don’t forget to remember”, words I wish for the world to hear. As the world quickly forgot, HIV+ people are still here and still suffering. Long term survivors of HIV will never forget to remember. It is written on my body, having been pumped full of AIDS medication as a child, fighting to live. Lipodystrophy, meaning my big belly; atrophy, the wasting away of my arms and legs; nerve damage; and gut problems make every step I take in the world physically painful.
What haunts me more than anything is survivors’ guilt. True heartbreak. Burying friends and their families with the same illness that runs through my body. The children that never became adults. The women who never had their story told. Forever wondering what the 44 million souls lost to AIDS worldwide would have done if they had the chance to live.
Positive people will never forget how society blamed, hated and shunned us. Wondering if the next funeral would be our own. Will anyone know what I died from? Would the next candle lit at a private vigil be for me? Would the next balloon the children released be sent out for me?
The fight that was required was unlike any other. I was championed by Positive Women Victoria to speak for those who had no voice; raised to be an advocate, because I was one of the lucky ones. I was given a chance to use my rage to change the society that hated my community. Now, at 33 years old, I am the chair, head of an organisation of women who raised me.
Attending conferences, board meetings, funerals and support camps as a teenager, I was thrown into another world which people could never know. My status not to be known as it would’ve meant I would never be free from the hate. My name was skilfully changed to protect me.
There was no time or space for me to cry and be sad. There was a battle to be had, making moments like these precious. Holding vigil was an opportunity to not only remember those we lost to AIDS but to shed a light on those very much kept in the dark.
For many of us, it was the only time we could be truly honest about our HIV world. Exhausted from fighting our own illness, losing the people around us, and then getting up again to advocate for the ones left. Hoarse voices, tired eyes, broken hearts; we came together, hand in hand to regain strength for the next difficulty ahead. Burning out, just as the candles we lit did the same.
In modern times, we have memorials. To remember; as if all the suffering is in the past; as if the war on AIDS is over and won. We speak out for the world to see our past; asking all of you to not forget to remember.
I will never forget the little girl in me who was desperate for the world to see. Now we beg them not to forget. We are still here, still fighting. And for sure as shit, still dancing.
My words here are for all the other long-term survivors.