Living positively with HIV
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Ankali Project pairs volunteers with people living with HIV to improve their social and emotional wellbeing in the face of ongoing stigma.
Story

Living positively with HIV

by Daniel Sleiman See Profile
Sydney NSW, Australia
7th Jun 2018
Living positively with HIV

HIV is no longer the death sentence it once was. Yet living with HIV still has its challenges. 

Aashvin was diagnosed with HIV at the age of 20. At the time he was serving as a lance corporal in the army in Singapore.

“Although it was just me and a friend who knew, the stigma that I had internalised from being gay and a person of colour seemed to amplify my isolation” he explains.

 A national survey conducted by La Trobe University in 2014 reported that 62% of people living with HIV experienced depression or anxiety related disorders. 

According to John William Jones, the manager of the Ankali Project many living with HIV struggle with social isolation. 

“These are people who may well have been on treatments for a very long time, and they have been on a disability support pension for a long time. People in those situations, their social circles shrink. Stigma and discrimination can have a play in all that.”   

The Ankali Project has been running in Sydney since 1985 and was based on a model that was up and running in San Francisco. It pairs volunteers with people living with HIV (PLHIV). 

“The volunteers provide social and emotional support with their client each week for up to five hours. The clients we get are chronically isolated and may not have anybody to have a coffee with” says Mr Jones. 

Melissa Havas has been a volunteer with Ankali since 2004 and for her it was about fighting discrimination. 

“I really hate discrimination. I worked at Prince Henry Hospital in the very early years of the AIDS epidemic. It really made me angry that they [PLHIV] were being discriminated against because of their sexual orientation” says Ms Havas. 

“Back in those days there was a lot fear, which there still is unfortunately.”

Pictured: Melissa Havas volunteering at Ankali.
Pictured: Melissa Havas volunteering with Ankali.

For Ms Havas volunteering at Ankali is also about giving back to the community.

“It’s just wonderful to give back and I’ve made a lot of good friends.”

“The person I am matched with at the moment is not able to get himself around and he loves the theatre, he loves the movies, he loves music so we go to all these things. This is an opportunity to do things that he loves that he would not otherwise be able to” says Ms Havas. 

Despite the challenges PLHIV face Aashvin has taken a positive approach to living with HIV. He has been living with the virus for seven years and for him it has become a non-issue. 

“Since engaging with the available supports for people living with HIV, I’ve made the most of my situation. I have healed from my trauma, have a clean bill of health and have an understanding of the responsibility that comes with my visibility. Overall, the effects have been positive.”

Aashvin sees himself as quite privileged living in Australia where treatment and support is accessible yet he is putting that privilege to good use. 

“I use that privilege to promote the active involvement of the wider community in prevention, education and destigmatising HIV” he says. 

According to the annual surveillance report released in 2017 by UNSW’s Kirby Institute there are approximately 1000 new HIV diagnoses each year. It is estimated that there are 26,444 people living with HIV in Australia with 10% being unaware that they are HIV positive. This figure is low in comparison to other developed countries and countries in the Asia-pacific region. 

La Trobe’s HIV Futures 8 survey points out that there are about 3000 women living with HIV in Australia whose experiences can be very different to that of men. By far the majority of those living with HIV are gay men and a lot of the support services are by necessity focused on that majority. 

Randelle Anderson from Living Positive Victoria says that “one of the biggest challenges facing women living with HIV, because the population is so small, [is] it’s very hard sometimes for women to find other women with HIV or find resources for women living with HIV.”

“That’s something that we try to breakdown by making sure that we have specific workshops and support services that are just targeted for women. And making sure that we are putting out collateral that would speak to the needs of women when it comes to menstruation or starting a family and becoming pregnant.”   

Jessica Lynn Whitbread was the first queer woman to be elected Global Chair for the International Community of Women Living with HIV. 

Source: International Community of Women Living with HIV.
Source: International Community of Women Living with HIV.

For Jessica one thing that “many women living with HIV experience, especially in a western context, is that there aren’t sexual networks that many women participate in that have an understanding of HIV.”

“Queer women don't talk about it. So, it’s quite lonely. For me (and many women) every single person that you want to sleep with, date, whatever, you need to educate them and that is not always easy and you don't always feel like it.” 

Ms Whitbread is also the “matriarch” of the No Pants No Problem (NPNP) dance party which has been happening since 2004. 

NPNP is set in the context of an underwear dance party and according to Ms Whitbread “is intentionally curated to be inclusive and raise awareness about different bodies, genders, sexuality and most of all HIV statuses.” 

Pictured: No Pants No Problem (NPNP).
Pictured: No Pants No Problem (NPNP).

“NPNP started as a way for me as a young queer woman to understand how to navigate my own sexuality and desire when I became HIV positive. In 2012, I hosted a NPNP at the Washington International AIDS Conference which I really thought was a one off, but it was so amazing and I was asked to do it at every conference since then” says Ms Whitbread. 

NPNP will be taking place in July this year in Amsterdam coinciding with the International Aids Conference 2018.   

Learn more about Ankali Project and NPNP!

The Ankali Project NPNP
Daniel Sleiman

About Daniel Sleiman

Daniel is a freelance writer and content producer who is passionate about giving a voice to the voiceless and those in our society who have been marginalised. He has a strong interest in social justice and loves to tell stories. For Daniel, stories can be powerful, hard-hitting, and a call for change.

More from Daniel Sleiman

Details

Health Care, Minority Voices
Sydney NSW, Australia
7th June 2018

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