Holding A Candle To HIV
Image: Positive Life NSW President Jane Costello and ACON President Justin Koonin at the Sydney Candlelight Memorial at Darlinghurst Theatre Company’s Eternity Playhouse. Photo: Reg Domingo
By Emily Shen
The Sydney Candlelight Memorial will be held at the Eternity Playhouse in Darlinghurst once again to remember, honour and celebrate the lives of those who have passed from HIV or AIDs.
Held on International Remembrance Day, the memorial has run for over 18 years as a joint production by ACON and Positive Life NSW to pay tribute as part of a global day of reflection. ACON is a New South Wales-based health organisation specialising in HIV prevention and support. Positive Life NSW is a non-profit, community-based organisation working to promote a positive image of people living with and affected by HIV, with the aim of reducing the stigma attached.
This year’s candlelight memorial will feature a performance by the Sydney Gay and Lesbian Choir as well as a speech by Professor Anthony Kelleher, the Head of the Immunovirology and Pathogenesis Program at the Kirby Institute. The memorial will also include its moving tradition of having the names of those who have passed read out by members of the community.
“It’s an incredibly powerful and affirming experience for a lot of people. Some have only been able to grieve privately and this is a way of being able to have the person they’re grieving recognised by others,” says Jane Costello, the President of Positive Life NSW. “It can also bring some closure for participants. It’s really about what makes us human – connecting with others around an event like this.”
The memorial has been valued by the community as a spiritual method of both honouring and paying respect to the lives of those who have passed due to HIV-related illnesses but also to recognise the lives and experiences of people currently living with HIV.
“It’s a place where everyone can feel safe and welcome and supported regardless of background or origin,” says Peter Schlosser, a speaker for the Positive Speaker’s Bureau, who has lived with HIV since 1984. “It’s an understanding that we’re a diverse group of people just trying to make the most of life.”
The memorial provides some comfort to those currently living with HIV in relation to breaking down the discrimination and prejudice that is often attached to living with the virus.
“As HIV and AIDS have gone from being a death sentence to a chronic, manageable condition, there’s been some social acceptance but many people living with HIV continue to feel stigmatised and that needs to change,” says Justin Koonin, the President of ACON.
“Social exclusion is one of the most painful aspects for someone living with HIV. There are support services available through ACON and Positive Life NSW, as well as other organisations but public acknowledgement at the memorial of what people have gone through and what people continue to go through provides validation.”
In their fourth quarter report of 2017, the NSW Government reported that 11 percent fewer people had been reported as being newly diagnosed with HIV by the end of the year, compared to the previous six year average. However, despite the lowering rates of diagnosis, the community has voiced concern that a fear of testing or seeking treatment due to discrimination is still of significance for many people.
“Self-stigmatisation is a large problem, particularly in culturally and linguistically diverse communities where there is already disempowerment,” says Schlosser. “Individuals with an HIV diagnosis won’t seek help because it means disclosing and possibly exposing yourself to discrimination.”
“In the 80s and 90s, stigma and discrimination were very overt but now, it’s more insidious. Someone on the outside of our community won’t notice that a nurse has put on three pairs of gloves when taking your blood but we do.”
The memorial has provided an opportunity to raise awareness and provide education to all levels of society about living with HIV though. “It’s important that we use the memorial to commemorate people’s lives but also to mobilise and strengthen our response to HIV,” says Costello.
“It’s about celebrating what we’ve achieved in our fight against the AIDS epidemic over the last 30 years but also educating the current generation of people who might not know about the history and how important that is.”
For the community, the history of the memorial is intrinsically linked to a better future.
“These days, by improving awareness and educating people, we help address stigma and discrimination,” says Schlosser. “The memorial is a commemoration and celebration but there’s always a powerful sense of grief and urgency. It’s a way of keeping up the momentum because we still have a way to go.”
May 20. Eternity Playhouse, 39 Burton Street, Darlinghurst. Info: www.candlelight.org.au
