Voice of Lived Experience
In this issue of Poslink+ Quarterly, which coincides with the referendum on the Voice to Parliament, Richard Keane shares why Living Positive Victoria is using our voice to ask people to consider voting Yes on Saturday 14th October. In doing so he reflects on how essential the MIPA and GIPA principles have been for our organisation, and for the self-determination of all people living with HIV.
This edition also features an interview with Justin Salerno about how meaningful engagement with First Nations communities has meant that the new 4th edition of the beloved Us Mob and HIV resource is more powerful than ever.
A National Voice Will be Critical to Close the Gap
by Richard Keane
Living Positive Victoria CEO
Living Positive Victoria CEO Richard Keane on our organisational support to vote Yes
On Saturday October 14th all Australians will have the opportunity to vote in a referendum to recognise the First Peoples of Australia in our Constitution through the establishment of an Aboriginal and Torres Strait Islander Voice to Parliament.
The Voice is the form of constitutional recognition that Aboriginal and Torres Strait Islander people asked for through the Uluru Dialogues and Statement from the Heart. Aboriginal and Torres Strait Islander people asked for this Voice to realise First Nations rights, structural reform and guide processes of agreement-making and truth-telling. The delegates used the word Makarata, which in Yolongu means to come together after a struggle, to describe their vison for the end point of this process. To quote, Makarata,
‘Captures our aspirations for a fair and truthful relationship with the people of Australia and a better future for our children based on justice and self-determination.’
As an organisation Living Positive Victoria has long supported the Uluru Statement from the Heart calling for a voice, truth telling and treaty. We came to this position because it accords with our values.
Many years ago, governments made a commitment to our Greater and Meaningful involvement in the response to HIV (GIPA and MIPA). To this day, our voices have influence at every level of decision-making that affects our lives. This principle has been core to the success of our country’s world-leading HIV response. I believe that the principle of a national Voice can also be critical to close the gap between First Nations people and Australians from settler and migrant backgrounds.
Previous Aboriginal and Torres Strait Islander advisory bodies to national governments have been established, then defunded or abolished. At the jurisdictional level Victoria has begun a treaty process with First Nations peoples which will engage in truth telling as a key component. South Australia has recently approved a model for their own voice to parliament. A patchwork approach at the state level means inequity across jurisdictions will occur rather than enabling national leadership and action in this space.
The year-long, divisive and racialised nature of the public debate around the referendum has undoubtedly had an impact on the wellbeing and quality of life of Aboriginal folks living with HIV and broader Aboriginal and Torres Strait Islander communities across the nation. It is always our preference to elevate the voices of those most affected by issues, however, Aboriginal people in our networks have seen the impact of speaking up.
The politics of a debate can often dilute its ethics. Non-indigenous Australians are all being asked to come to a decision. Reconciliation or Makarata is not a journey that First Nations people can make alone. Neither can reform be made without our support. First Nations people have invited us to walk with them ‘in a movement of the Australian people for a better future.’
It is for these reasons that Living Positive Victoria released a statement when the referendum date was announced which asked our members, allies, partners and supporters to consider voting “YES” on October 14th.
Living Positive Victoria supports, and in turn is strengthened by, our communities’ diversity and their confidence to express it in all aspects of life. Our vision is of a world where people living with HIV live their lives to their full potential, in good health and free from discrimination.
To our Aboriginal and Torres Strait Islander community members, regardless of the outcome of the upcoming referendum Living Positive Victoria commits to re-engage in our Reconciliation Action Plan (Reflect) process which began in 2020 but was interrupted by the impacts of COVID-19. We made the decision to postpone this shared journey as we believe for it to be both genuine and meaningful, it required ongoing opportunities to engage community in-person, to listen to learn, to reflect and to act.
There are challenges for a smaller organisation to engage all stages of the plan, but this will be discussed as part of the Reflect process. Our goal is to provide service access choices to Aboriginal and Torres Strait Islander people across our state via whole of organisational cultural safety training and in turn, extending meaningful involvement at all levels of our organisation and the opportunities that flow from it in a more equitable way for First Nations Victorians living with and affected by HIV.
We will achieve this by continuing to provide confidential individual support and system advocacy within our peer navigation service delivery models. We will also continue to invest in, and strengthen our partnerships across Aboriginal community-controlled organisations and seek opportunities to expand networks under Victoria’s first Aboriginal Sexual Health Strategy 2022-2030.
Living Positive Victoria’s statement in support for the Aboriginal and Torres Strait Islander Voice to Parliament can be viewed here. You can read the full Uluru Statement from the Heat at ulurustatement.org
Us Mob and HIV
by Timothy Krulic with Justin Salerno
Aboriginal and Torres Strait Islander people should be aware that this article contains names of people who have passed away.
Justin Salerno leads projects related to Aboriginal and Torres Strait Islander health at Health Equity Matters, the peak organisation of the community response to HIV in Australia. We met over a video call to talk about how community involvement helped make US Mob and HIV the go-to HIV resource for Aboriginal and Torres Strait Islander people for the last 20 years. This interview has been edited and condensed for clarity.
Can you tell me a bit about your connection to your work?
I’m a descendant of the Stolen Generation and I grew up in Perth, WA. I’ve always wanted to know more about my culture. It's been something that's, you know, been there, but there's always been missing pieces as well. With my role I've had the privilege of getting to learn more and I guess connect the dots about my Aboriginal heritage and apply my knowledge and to do great work for the community.
I often feel a similar way about the privilege of doing community work, but that’s really cool. And why sexual health?
It was a bit of being in the right time and place at Health Equity Matters. I've never been shy to address anything related to sexual health. I’ve studied but, you know, being a gay man. It’s always something you have to be across.
Of course. And you were involved in updating Us Mob and HIV, now in its fourth edition. Do you mind giving me a bit of a history lesson? Why was it important to update?
Yeah, the Us Mob and HIV booklet has three editions released in 2003, 2005, and 2014. Over the years it’s been highly utilised, and it’s well-known. I have been in multiple situations where the booklet gets brought up as such a useful resource, including from community and medical services. I think that speaks to it being something that people continually like and use.
Why is that?
The booklet has always been a way to get messages and information out to community, something that’s culturally appropriate and relevant to Aboriginal and Torres Strait Islander people. Most often that might be about the language. Some words wouldn’t be used in community because they’re a little too scientific or medical. In that case it’s about simplifying and making it easier to digest. Sometimes formal writing isn’t relatable, but closer to the way community speak. Or it’s about how sensitive topics are approached with our emphasis on storytelling.
So, what changed from edition three to four?
We’ve updated it with information about the new technologies, including PrEP and treatment as prevention. The last booklet came out in 2014. With new content essentially the advice was to cut down the information in the booklet so that it was more digestible, but we wanted to provide the option of accessing information on these topics if they wanted to without losing any meaning. So we created four factsheets as well on PrEP, PEP, Treatment as Prevention, and HIV Testing. In addition, the Us Mob and HIV booklet has been made into a website, which now also has new animated videos and audio yarns, which is again another way for people to engage with the content. We know our community absorb information in different ways.
How you go about involving communities this time?
We partner with our member organisation, Anwernekenhe National HIV Alliance (ANA), for our work with Aboriginal and Torres Strait Islander communities. We had a reference group of Indigenous workers (and other workers) from our member organisations to give us feedback initially about what we wanted done from the old booklet and to understand what the needs were in each state and territory. We went through that consultation with everybody, and engaged with the community for the purposes of focus testing. The focus groups were all online because of COVID, unfortunately. The booklet has included yarns from several community members and we also engaged some new people to produce new personal stories for the yarns for this new edition.
I love the yarns! Can you tell me a bit about your thinking around that?
I definitely wanted to make sure we had yarns from different parts of the community. Something I noticed since I started working in this space, was the need to make sure we have visibility of our Brotherboys, Sistergirls and trans mob. My thinking was, let’s make everybody as visible as possible. We now have yarns from a gay man, a woman living with HIV, a man living with HIV, a Brotherboy and Sistergirls. Most of them are in the booklet and we’ve added a couple of additional ones onto the website where we had some more space.
How do you feel about the Brotherboy and Sistergirl stories you were able to include?
I love them. It took engaging with many more people to connect and find people, and not everyone wants to do something like this or share their story. So it was nice that we could get three people to be a part of it. We can always empathise and understand, you know, the things that Brotherboys and Sistergirls, and trans mob may be going through, but it’s not the same experience.
And just to know that, if a Brotherboy or Sistergirl, or someone who is trans does open the booklet and they see these yarns they’re going to feel like, OK this resource is for me as well. A real empowerment message came through from Jane’s Yarn “Remember that being Sistergirl is strong and powerful, and we are resilient, so keep yourself safe at all times especially when having sex. Always love yourself no matter what”. Having the inclusion of Sistergirl and Brotherboy experiences, it makes it more inclusive of everyone.
The videos and illustrations were another way to share as much visibility across different parts of the community as possible. You know, we also had straight couples, gay couples it’s important to show this inclusion and that HIV and other STIs don’t discriminate based on gender.
Yeah, and when you mention everyone not being able to share their story, there’s a balance of protecting people’s privacy, but also showing who they are. I feel like the audio stories were a really good way to do that.
With the voices, you know, you get to hear that and you feel like you're not alone. There are other people that will go through a similar experience. The booklet is also a resource of support for people who are newly diagnosed with HIV. So if someone is maybe going through a tough time and then they've gone and say, read Michelle or Michael’s story [of living with HIV], or listened to the audio, it's a sense of comfort that they are not alone and it helps normalise the experience.
I also wanted to talk about the art. I feel like it’s been a part of Us Mob and HIV for a long time.
The artwork, Dialogue, has been on the front cover from the first edition. It was by Arone Raymond Meeks who sadly passed away a couple of years ago. Arone was an accomplished artist and leading advocate for Aboriginal and Torres Islander people including those living with HIV Through art, he shared his story and that of his community by interconnecting Aboriginal culture, HIV and health promotion. People identify the artwork with Us Mob and HIV. It’s part of its identity.
At the time of creating the fourth edition there was also the issue of the copyright and use of the Aboriginal flag. In previous editions, we had used the Aboriginal flag and the Torres Strait Islander flag. We didn’t want to include one without the other but without permission from the copyright owner it was a risk to send it to print with the Aboriginal flag. Our solution was to include Torres Strait Islander artwork on the back cover, and were able to add the wonderful artwork, Floral Nam Dari, by Torres Strait Islander artist Toby Cedar, which has the colours of the Torres Strait Islander flag.
You mentioned the videos before were a way to show visibility. It might sound simple to turn the fact sheets into videos but there’s a lot of work and creative decisions that go into that.
It was important for us to find an Aboriginal run and owned production company to help us with the videos. We wanted the people who were behind the screen creating the illustrations to know, we all look different, we're not all one skin tone. We needed the people behind that creative process to understand, it was about getting that balance right. Through our consultation with the reference group we’d also selected Kriol and Torres Strait Creole (Yumplatok) as languages for the videos to be translated into. There are many languages within our Aboriginal and Torres Strait Islander communities, but our reference group thought these would reach the most people across the country in these national resources.
The Fourth Edition of Us Mob and HIV as well as many other resources are available to download from usmobandhiv.org.au
Main image: Dialogue by Arone Raymond Meeks.
The Uluru Statement is an artwork as well as a political document, in the tradition of the Yirrkala Bark Petition and Barunga Statement. The artwork was led by senior Maruku artist and Uluru traditional owner Rene Kulitja, and painted by Mutitjulu artists Christine Brumby, Charmaine Kulitja and Happy Reid. Two Tjukurpa creation stories of the Anangu people, who are the traditional owners of Uluru, are represented in the painting. It includes the signatures of 250 Aboriginal and Torres Strait Islander leaders present at a four-day First Nations Convention at Uluru. Source: The Sydney Morning Herald.
ISSN 1448-7764