On The Couch with Josef Garrington from ACON

Maddy Stratten: [00:00:00] Hi, and welcome to another episode of On The Couch, where we collaborate with experts, practitioners, authors, advocates, and influencers to explore current social themes, sex positive topics, and share stories and insights that matter.

Winnie Adamson: This podcast was recorded on Aboriginal country. We acknowledge the traditional custodians of the lands that were never seeded on which we live, work, and record upon.

Maddy Stratten: We pay our respect to elders past and present, and to those who may be visiting our website or listening to our podcast today

Winnie Adamson: while listening. We encourage you to practice good self-care, and of course, check the show notes for further information

Maddy Stratten: wherever you are, whatever you're doing,

Winnie Adamson: enjoy this episode of On the Couch.

Maddy Stratten: I'm here with Joseph Garrington from ACON Welcome, Joseph. It's such a pleasure to have you on the couch.

Josef Garrington: Hello. It's always good to be back.

Maddy Stratten: It's, um, really such a, a privilege to have you and also have some [00:01:00] prerecorded lived experiences to share with our listeners today. Uh, .

Josef every year we've had an episode dedicated to HIV, to mark World AIDS Day. And you've been involved in a regular episode On The Couch In each one of our sessions, and I think actually the joint episodes came from an annual webinar series you were doing in the Illawarra Shoalhaven.

So in saying this, I don't think we've ever actually, recorded and published an episode with you as the main guest and introducing you to our listeners. So I'd love to start off by doing that today, using the concepts of fields of existence and coordinates of belonging. So to our listeners, these concepts were introduced to us from Co-Culture Communications and demonstrate that our being is a field of activity made up of the stories that we've been told, our ancestors that have existed, the lands under our feet, and all of these places that we stand, and all of [00:02:00] these forces form who we are in this moment as contextual beings.

So Josef how do you define and locate yourself and what are your coordinates of belonging?

Josef Garrington: Yeah. Thanks Maddy They're, they're great questions. Um, uh, well, firstly I'd like to Acknowledge I'm coming to you from Gadigal Country up here in Sydney. Um, uh, that's where I'm located and very, fortunate to, to live, work and play, on these lands. So yeah, I'm a, I'm a uninvited white settler on these unceded lands. I grew up on Widjabul Wia-bal land up in Lismore, which is part of the Bundjalung Nation. Um, so I am a country kid at heart and. the country will always be my home. Even though I live here in Sydney, it's not my home. Uh, I, I feel more myself when I'm out in the, in the green and blue of the, um, of the regions.

[00:03:00] So I'm really fortunate that I get to work down the beautiful South coast from the Illawarra region all the way down to the Bega Valley, bordering Victoria. Um, so yeah, it's, it, it's so important for me to, you know, ensure that regional, rainbow folk, so that's anyone whose sexuality or gender diverse has access to the healthcare that they need in the towns that they live in.

Mm-hmm. Um, and connection to community because I, I didn't really have that growing up and felt like I had to come to Sydney to get that. Um, so I've kind of gone full circle a bit. Yeah, it's, it's a special thing for me to be able to, work in this space.

 So yeah, that, that's a bit about me, I guess.

Maddy Stratten: Mm. I've heard you mention, um, in separate conversations around [00:04:00] that you're a strong and imperfect ally. And I love that saying too. I think it's, um, yeah. It's, it's one that's really stuck with me when we've had conversations before.

Josef Garrington: Yeah, totally. There's, there's always more for any ally, no matter what group you are, allied with, there's always more for us to learn and do. That never stops. So, yeah, I think it's important to always remember that.

Maddy Stratten: Thanks so much for, for sharing that for this episode. Um, as I mentioned earlier, in every season of On The Couch, we've had an episode dedicated to HIV. Last season we met with Tasha and Mel, two women living with HIV from the Positive Speakers Bureau.

We also met with clinical sexual health nurse Naomi Hoffman. They shared about the importance of raising awareness of women and HIV and the advocacy work for marginalized communities and the impact on education and prevention. It was a really, um, I guess [00:05:00] real and honest episode, which has expanded listeners knowledge around HIV through this new lens.

So I'd encourage our listeners today to go back and have a listen to that episode for sure. It's received really, positive feedback. Um, but I wanna build on this thread of episodes today and spend some time with you, Josef to explore the current HIV conversation and unpack this role of allies. I don't want this to feel like a HIV lesson.

We're here to continue the HIV conversation, but I do think it's important to lay down some foundational pieces of information and connect our listeners with where they can learn more about HIV, um, which again, will be in the show notes with, recommendations from Josef Um, I might start with just saying, Josef you work at ACON

ACON is a peak organization for community health, inclusion and HIV response for people with diverse sexualities and genders. So can you start by sharing your, about your role at ACON [00:06:00] and, and I guess some of the insights into the current HIV landscape and the big milestones you've seen, and I guess where we can continue to focus.

Josef Garrington: Yeah. So yeah, I'm in the regional outreach team, uh, being based in Sydney and covering the South coast. My role is a health promotion officer. So what that means is I'm a bit of a networker and connector. So connecting um, regional health providers into the information that they require for their clients, participants and customers that access their services.

Um, uh, helping them with referral pathways if they need,, you know, extra assistance for people. Uh, linking in community members to the services that I am aware of. You know, word of mouth is a really strong thing. And if , if a community member came to me and said, Hey, I need assistance for this [00:07:00] issue.

Where, where can you suggest I go? And if I, if I am connected with that service and I can say, yeah, look, I've met the people, I've been to the space. You know, you'll, you'll get treated well there, you'll be safe there. That is really huge. Um, uh, 'cause getting through the door is one of the hardest things for people to do when they need help for anything.

So, um, that's a really core part of my role. And service providers are wanting to be educated and more safe and inclusive to, you know, the LGBTQA Plus community, um, which is really good to see. The other main part of my role is helping the community do the things that they wanna do. So community member came to me and they wanted to start a social group in the town they live in.

If there isn't one there already and they dunno where to start, I can sort of workshop [00:08:00] with them on that. Um, I'm not a clinician, so I can't meet with people directly for those assistants, but I can link them into the clinicians that we have at ACON for that, part of their assistants. Um, and yeah, then the community groups that do exist in the regions, um, it's all about working out how I can help them do the things that they wanna do. So is that running events or running catchups? Advocating for them if there is a particular issue happening within, a town or a region. So, you know, I can, talk to police, I can talk to councils, I can talk to health bodies. Um, if there are any particular issues that community groups raise with me.

So it's quite a varied role, um, and a really important one, and one that I cherish a lot. The, the sort of broader context, for ACON these days, um, uh, you [00:09:00] might have heard listeners, that, the inner city, uh, of Sydney has virtually eliminated HIV. So what that means is, the, uh transmission rates within the inner city are so low, it's virtually eliminated.

However, there's still a lot of work to do , both in regional New South Wales and for, um, men who have sex with men who are born overseas. So those groups are still increasing only slightly. However, as a whole within the state of New South Wales and the country, HIV transmission rates are on a decline, and they have been for quite some time now. Um, we saw a large decline over COVID because, one people were having less sex during lockdown, but also there was less testing, um, because a lot of sexual health testing was pivoted to COVID testing.

Those numbers are, uh, coming back up to where they [00:10:00] were before COVID. However, they're not at a rate that is, of concern. Um, having said that, yeah, we've still got a lot of work to do , In reducing transmission rates in regional areas and within men who have sex with men who are born overseas.

 So , that's where organizations like ours have a strong focus at the moment. Um, and I know the, the state government also is supporting us in that work.

Maddy Stratten: Mm-hmm. Yeah, for sure. And especially with the, the new, HIV strategy that'll be coming out next year as well, we'll be able to see those priority populations laid out really clear and, and kind of helped to map us out for our next pieces of work, um, to help reduce that transmission.

So yeah, thanks that overview. I think it's really important to have that context before we start this conversation, but I do wanna, um, chat a little bit more about you and your work, um, and get a bit [00:11:00] of an insight into that community outreach work that you were talking about.

Um, can you share some of the, the key resources and referrals that you provide in that community outreach space?

Josef Garrington: Yeah, it's there. There's a lot of information out there. Um, so sometimes, collating a pretty good list really helps. Um, I'm very much one that, will provide everything and if there's only one thing in there that you'd need at the time, great, but there might be something else later on.

So I generally send a really large list of links to folks when they're requesting information. ACON has a lot of different websites. The main one, acon.org.au has a lot of information on there and links to further projects that we have, um, some of the projects have very specific websites as well.

 Um, so the ending hiv.org au is [00:12:00] probably the main one to get access around HIV and other, um, sexually transmitted infections, so I recommend people jump onto that one. Um, there's another website that, ACON managers with, um, Thorne Harbour Health, who are our, siblings down in Victoria. Um, so we run emanate.org au and that is the national, HIV and Sexually Transmitted Infection website.

So that one gets federal government and, um, ACON and Thorne Harbour Health run that one together. Um, also has some really good information and interesting blogs that people might wanna check out. Um the work that, that I'm specifically doing, it's mainly when, like a service might reach out to me and say, oh, hey, we're an alcohol and drug service um, we have someone who believes they might be, at risk of acquiring HIV. Um, and we're wondering [00:13:00] like, do you have extra information or peer supports that they can connect in with? And, um, yeah, I'll, I'll share that information with them. At times, it might be just providing the information to the service provider and they share it with the , client or the patient or participant or at times, um, they might link in the participant with me directly and I'll share it with them directly via email or, or phone.

So it can vary. Um, yeah, it's, it's mainly like if, if people have a question, I want them to, to ask it. Um, and if I dunno the answer, then that might help me get some extra information that I didn't know was out there.

Maddy Stratten: Yeah, I can really see that web of knowledge that you have to be able to connect people and make those links really strong and safe. So, um, yeah, really, really cool work that you do. We were [00:14:00] actually side by side at the University of Wollongong recently for the Trans and Friends Festival Illawarra, which was such a fantastic community event.

 Shout out to Illawarra Shoalhaven, Gender Alliance for that event. Um, can you share Josef with us? Around any, I guess, community outreach stories from allies or, or people who are supporting a loved one with HIV?

Josef Garrington: Yeah, there, there's been many over the years, so I've been in this role for more than six years now and um, I.

Sometimes it's from , parents who have a child living with HIV, um, and they've come up to me and they've said, oh, my, my child got assistance, from ACON or a different organization. And, um, it is, you know, it's saved their lives. They're doing really well, so that's really beautiful to hear. Um, uh, I of course meet , plenty of people living with HIV and their supportive [00:15:00] partners.

Um, uh, we've had people living with HIV and their partners on forums like this in the past, sharing their stories. So yeah, there's, there's a whole range of different. relationships that are out there of people getting support from loved ones. Yeah. Yeah. And it's, it's beautiful to see.

Maddy Stratten: Yeah. What is available through ACON for those people who are supporting a loved one living with HIV.

Josef Garrington: Yeah, it's, it's mainly the information that we can provide. Um, the, the peer work specifically is for the, the people living with HIV themselves. However, there, uh, would be options, to have, someone join, their loved one during a session, perhaps if they're wanting to like, you know, um, be educated a bit further on things or wanna know how to support their loved one. I'm pretty sure that our client services [00:16:00] team would be able to manage that, and work on that with the, the person living with HIV, who's, who's getting the assistance.

Yeah.

Maddy Stratten: Yeah. Yeah. And I think it's really like part of this broader piece of work around reducing HIV stigma. And I wanna hear from people with lived experience before we move any further into talking around HIV stigma.

We don't often share videos or sound bites, in our On The Couch episodes, but we really found this beautiful piece, of work from ACON in the, It's Time To Think Positive About HIV campaign, which is a few years old. Um, but it really shares stories from those people, with lived experience and their support, and allies.

So, we really wanted to share this as it showcase that kind of allyship that can end stigma through the reflections and connections between people living with HIV and their HIV negative allies.

Sivan: [00:17:00] My first experience, um, being with somebody who was HIV positive, I was 19 and just my response wasn't great at all. I wouldn't have a reaction if I could turn back time. I take responsibility for my actions and I feel very safe and confident. I'm listening to the science. So someone's HIV status. Um, doesn't matter to me.

Undetectable means untransmittable and it's simple as that.

Justin: As Chinese family means everything to us. I remember feeling so ashamed at the beginning. I didn't know how she would handle it.

Anna: I didn't know if, if safe to hug him. It's not easy for me, but accepting him for who he is, was right things to do, the stigma is, uh, more serious than disease.

Justin: Being able to talk about my HIV in front of her feels liberating. She's become an ally for people living with [00:18:00] HIV, and that has made our relationship a lot stronger.

Anna: I cannot say no.

Ruan & Anthony: I guess I took the time to educate myself ag around the science of U equals U, knowing that it wasn't a barrier. That felt amazing having a partner who just didn't care about my status. It's empowering and it gave me the knowledge that I'm gonna have a full rich life and I'm gonna get to experience love, and I'm not gonna have to do it on my own.

Don't let your own fear and biases stop you from giving something a real opportunity. You never know where things might take you, what beautiful things might form. Because HIV doesn't define our relationship anymore, we can now focus on the other important things like building a life together and, and, and having lots of sex instead.

Lola: I think I'm able to be an ally because I turn up to work each day and find ways to best support, um, my people. Having someone to kind of hold your hand, going through and navigating the healthcare system to be able to do that for someone else is really cool. I think the biggest thing [00:19:00] that I've learned is just to listen.

One of my people said to me the other day when I was asking him what it means to be an ally, and he said, it's just being a mate, and I think that's, that's it.

Andy: He sat next to me and then he started crying. He told me that he got HIV and I don't know, I'm just. I, I don't know what to respond, but the first thing that I did was to hug him tightly.

And then I told him that everything will be all right. We are gonna get through this together. Being HIV positive doesn't define a person, he's still a wonderful person. I've known the first time that I said, would you be my boyfriend?

Eloise: People living with HIV have. Bear the burden of fighting and advocating, um, against HIV stigma for too many decades.

Charlie: I've been living with HIV coming up to [00:20:00] 16 years. Stigma has impacted how I feel about myself. Seeing community members come forward, stand beside us is just a really powerful thing.

Eloise: To be an HIV ally. It's really important to listen to people living with HIV, listening and learning, and then talking to other people and educating them. It would suck to have Charlie needing to, um, navigate stigma and in the process need to educate me. People living with HIV need a break at some stage to be able to relax in their friendships and then we can just focus on being friends.

Elosie & Charlie: It's time to come together.

Andy: It's time to love.

Ruan & Anthony: It's time.

Lola: It's time to be an ally.

Sivan: It's time to think positive about HIV.

Anna & Justin: It is time to come together. [speaks in Chinese], it's time. It's time to I said hug me. You finish and then you hug me. Huh? [speaks [00:21:00] in Chinese], Oh.

Maddy Stratten: I absolutely love how that video ends, because I feel as though we kind of go through that whole video and you're feeling all the emotionals and then we're ending with such joy and it's such a great, video. But, thank you Josef for, um, sharing that with us. Again, I really wanna give our listeners, um, some time to reflect on this campaign, and really think about what it was saying, it's really talking about listening and learning. It's about coming together as allies to educate ourselves, think positive about HIV and continue this conversation so that we can, end HIV stigma. Um, I think about how the video starts where, one of the support people were saying how stigma is actually, um, bigger than the disease.

And so I thought that was, yeah, a really interesting way of thinking [00:22:00] about stigma because I think it can just be like added on, oh yeah, we're talking about stigma, but actually like. It's really impactful, isn't it? So did you have any thoughts you wanted to add around these key messages, Josef

Josef Garrington: Yeah, look, I absolutely love the video, um, that our campaigns team made. For that think positive about HIV campaign. Um, it features some of my friends and colleagues and. Yeah, you're right the, the ending there. It's just so beautifully natural and uh, really great that they kept that in. I like it when campaigns keep in some of the bloopers.

Yeah. You know, just really highlights that these are real people. Um, they're not paid actors real lives. Mm-hmm. Um, and I think it just makes it so much. So much stronger. Yeah.

Um,

uh, yeah, the, the, the impacts of stigma, are, are strong. Um. [00:23:00] It can be absolutely devastating, to people if they have a negative response from those who are supposed to be their supporters.

And receiving a HIV diagnosis, is, is still quite a, a traumatizing experience for people. Even though , it is a manageable condition. Um, and people on medication living with HIV can reach an undetectable viral load, which means they can't pass it on to anyone else. And that has been extremely freeing for people living with HIV.

Um, but it still, it still is quite a blow. And to not have that support, um, can be really dangerous, to, to someone's mental health. So, our message is pretty strong that, you know, the loved ones need to, need to educate themselves. Um, they shouldn't rely on [00:24:00] their loved person to do that for them. If someone tells you that they're living with HIV, uh, it's up to you to find out the answers by looking it up yourself, not asking them directly. Mm-hmm. If they, if they offer it, then that's a different story and every relationship is, is different. But yeah, I do encourage people to educate themselves, in their own time. instead of bombarding all the questions on your loved person who, who might have just told you, um, yeah.

That'd be, that'd be my sort of big piece of advice. We've got heaps of information out there. Um, it's very easy to find. So yeah, look it up.

Maddy Stratten: Yeah. Yeah. That's great. A great piece of advice. Um, uh. I think as we continue this conversation, um, I'd like to move on into really recognizing and remembering the lives lost to AIDS related illness, especially at a time, as you [00:25:00] said, with many advances are being made in HIV prevention, testing and treatment space.

And you've mentioned , education and resources that are out there for, um, new HIV diagnosis, but I, I do wanna just take a moment to remember those lives lost. Um, and there is a lot of work happening in this space. So Josef it'd be great if you could share some of that work that is happening. I know locally we've got a few, um, memorial events coming up that you might wanna share about, but, yeah, if you could share some work that's happening to recognize lives lost to AIDS related illness.

Josef Garrington: Yeah. Um, so this year, ACON marked its 40th anniversary. Um, so in 1985, ACON was formed by community members because they were sick of dying. Mm. The government and the health authorities at the time were doing nothing. And it was community members. And this happened all across the country in [00:26:00] each state and territory.

Um, they got together and formed organizations like ACON uh, because no one else was advocating for them, so they had to do it themselves. So over that time, uh, there have been many lives lost to HIV, not only in Australia, but globally. And every year, uh, on the third Sunday of May is the International AIDS candlelight Memorial Day.

So that happens every year internationally, and there are events across the country. Um, the, the main one in New South Wales, would be, um, in Sydney. And that's where ACON and Positive Life New South Wales partner together and, and form a beautiful candlelight vigil, and ceremony to mark that occasion.

Um, this year for World Aids Day, we'll be, celebrating the, uh, additional Memorial plaque for the Wollongong and [00:27:00] Regions , AIDS Memorial. So in the, in the, previous years when ACON had an office in Wollongong, uh, that closed in 2013 , uh, there used to be a AIDS memorial outside that office and it was kept safe.

Uh, with plans for ACON to rehome it within the Illawarra at some point and we did that a few years ago at the Illawarra Memorial Gardens. Um, so that Memorial Stone marked the names of people, who had died while the ACON Wollongong office was o was open. Um, and after that event, um, community members who were there, had a chat to me about adding additional names, uh, to the memorial to, signify further, people who have died. Um, so yeah, we, we did that. We have a new plaque there now and this Saturday on the 29th of [00:28:00] November, we'll be hosting another gathering , at the Wollongong Memorial Gardens to signify the additional stone and, and to, um, reflect on those names.

Um, yeah, I know in other regional parts, across the country, um, similar things are happening. So there, there's, there is continued, ceremony to, to mark those who have died from AIDS related illnesses. Yeah. And it's something that we should never forget.

Maddy Stratten: Yeah, absolutely. And I think that leads, really perfectly into our final guest, um, today, who, you may be familiar with for those who work in the sexual health promotion sector as Kaitlyn works with us , in the Caddyshack Project and we are more formally called HIV Related Programs Unit. So we met up with Kaitlyn earlier this week and she shared with us about her experience of being a family member of someone who has passed away from an AIDS related illness. And I'll [00:29:00] hand over to Kaitlyn to talk us through that, what that experience was like for her as a young child, her family, her relationship with her uncle, and how that experience has impacted the work that she's doing now in this space. I'd also like to offer a mental health trigger warning here as the video does, discuss suicide. So, I'll refer to Lifeline for support. I'll hand over now to the video of Kaitlyn sharing that story.

Kaitlyn Middleton: I have worked for the Caddyshack Project for well over seven years, but a lot of people don't know that I actually have a family member who passed away from AIDS related illness. Um, and I feel so privileged that I am able to talk on behalf of my uncle and um, for the family also letting me provide this information.

I had a great chat with my family yesterday in regards to my uncle's life and [00:30:00] for me working in this space for well over seven years, just seeing the impacts and the changes have just been so rewarding on so many levels. Um, so I first of all just wanna say thank you to my family for letting me share this story.

And my mom specifically said to me, she said, if this can help just one individual, then we are doing something right. Um, I'm gonna try and not get emotional in this. Um, but it is also, um. Uh, a a lot. So I am, yeah. I'll just get started. So my uncle was born on Valentine's Day in 1966, and he actually passed away on Father's Day, on September the fifth, um, 2004.

So he was 38 years of age. At the time I was a 12-year-old. Girl and my brother was 14. [00:31:00] Um, so I had a chat with my mom yesterday and I said, how did you first find out about my uncle Andrew? How did you find out about his diagnosis? Uh, at the time she was living away and she got a phone call from her father, um, to let her know that her brother had contracted HIV.

The initial reaction was shock and sadness. Um, and after that she phoned her brother and she said, we're always here for support it doesn't matter. Um. And anything that we can do. I also spoke to my auntie, and she said the exact same thing, where we are here to support you, it doesn't matter.

Um, my nan she unfortunately passed away last year, but she had a lot of guilt and she, she used to always say to the family, she did [00:32:00] absolutely everything for my uncle because she said, uh, a, a parent should never have to go through this. We should always pass away before our children do. So she did absolutely everything to the end.

 So Andrew contracted HIV at 18. He moved from a small country town to the city and got caught up in the wrong crowd. Um, so he got addicted to heroin, but he was lucky enough to, beat that addiction at 20. Um, and he had had a, a normal life for a long time. Um, he moved to England and met his partner Philip, who is still alive to this day.

So he has HIV, but he's living a happy, healthy life. He worked in a a jewelry shop and then also a call center. And, um, [00:33:00] after coming back from London, he moved into the city. So my family just have fond memories and so do I, of going up into the city. He had these two rats that lived with him, like these huge rats and he was just fun.

He was the fun un uncle that, um, just larger than life. Um, gave lots of quirky presents. He used to write me cards all the time and letters because at the time was a young girl and everyone used to get, um, letters in the mail. And I used to get angry because I'm like, no one's writing me letters. Little did I know most of the time it was just bills that, um, my family members were getting. But he used to write me letters and, put them in the mail so I would receive them. Um. So he lived in Sydney for a, a number of years. Um, towards the end of his life he spent a lot of time in and out of hospital. So at the Sacred Heart, he become really good friends with the professor [00:34:00] at the time.

And, um, the professor was actually called Professor Cooper. Um, and it's pretty ironic, because that's my son's name and we, we totally forgot the professor's name, until yesterday and we had that conversation. Um, so the professor took Andrew's case and did all clinical trials on him for years. To this day, we still don't know if he took the placebo or it was the actual medication.

Um, and my family just wanted to reinforce that the palliative care nurses were incredible And professor Cooper definitely took him under his wing and tried everything that they could. Um, it. It was a, a sad time. Um, but the nurses were just very, very [00:35:00] special people. So after my uncle actually passed away, the nurses invited the family back, to a memorial, um, which was really special.

And speaking to everyone, they said it was a closing chapter. Um. Towards the end of his life, he did try and, um, commit suicide. He actually escaped from the hospital and he was found in his Sydney apartment. Um, and speaking to my auntie and my mom, like everyone knew that he, he didn't want to go through this anymore.

He was so sick towards the end and so frail. Um. So my auntie was saying yesterday that it is good that the assistance, in, in dying is now available because he was sound of mind, and he just didn't wanna go through the pain anymore and being so unwell. [00:36:00] Um, so that's a little bit about his story.

There is so much more to share. But he was a very special man and, um, I'm so thankful that my family were able, um. To talk me through the, the good times and yeah, speaking yesterday to them was a very special time.

Um, so how I was told I was very young, but my mom just normalized it. She said, look, your uncle has a condition it's called uh, HIV and we just have to be careful around him 'cause he has a compromised immune system. So, um, the common cold can make him very sick. And it was just normal in our family. Like I would often go up to, um, Sydney, we would stay in his house with those awful two big rats. Um, and even at the end when, um, the doctors and the nurses were [00:37:00] around, we would all be sitting together, um, talking about the different medication.

I didn't really know what was going on, but I used to just love hanging out with him. Um. One thing I do remember is towards the end, he was extremely skinny and he had sores all over his face, and we went down and got a coffee and there were so many people just staring at him. My mom said, well go, go hold, go hold your uncle's hand.

Um. And I did. And I, and I thought to myself, people are so quick to judge, but they don't know what someone is actually going through. Um, and I do think the main point is in anything, you've gotta be compassionate in life because you don't know what someone is going through. Um, and I think that is really important to remember that.

Um. And a lot of people ask like, how did you get into this job? So [00:38:00] for me personally, um, I always wanted to be a nurse, but I can't stand blood. Um, so I thought public health is the next best option. So I know it sounds cliche, but I like helping people and, working in this space has been so incredibly rewarding.

Um. When Prep and Pep first come out, I remember going to my nan and just saying, and like, look at these medications that are out now. And she was just so ecstatic to hear how it has changed over time and how people who have contracted HIV can live happy, healthy, normal lives, um, like we all should.

So. I am very thankful that, um, I can be part of this space and, learning constantly and just seeing the supports that are out there and also, um, just the medications and everything. Um, and for those that do know me, I [00:39:00] am very family orientated. So I am really thankful that I was able to share this story today.

And, um. Yeah, that's pretty much from me. I just wanna say thank you for to my family for letting me share my uncle's story, and that's only a small snippet of his amazing life. But, we are thankful that we are able to share it and hopefully this story, resonates with someone and, and can help someone.

But the main message is. You never know what someone's going through, so it's really important to be compassionate in life for everyone.

Maddy Stratten: wasn't that just really special? Um, I want to take a moment to really thank Kaitlyn and her family for so generously sharing that story, um, and that snippet and their experience of supporting Andrew, loving him beyond a diagnosis and [00:40:00] really fighting against HIV stigma and discrimination in practical ways.

Um, I loved hearing how Kaitlyn shared her experience as a 12-year-old child. And even though she wasn't a huge fan of her uncle's pet rats, even though they were in crates, um, she was a real active part in Andrew's support network. And I think, I would love to talk a little bit more about, um, that with you, um, Josef around, you know, Kaitlyn was 12 and she was still a real active part of, of his support network and, and also how Kaitlyn's story really shows the multiple hats that, um, our colleagues may be wearing in this space. And, and I guess gives an insight into the passion and drive for creating change. Josef do you wanna add your thoughts around experiences like Kaitlyn's and many others that you would've heard from people, family members, support people, community and allies?

Josef Garrington: Yeah, sure. Thanks [00:41:00] Maddy I also, mirror your words and thank Kaitlyn and, um, your family, Kaitlyn, for sharing that story about your beautiful uncle. Um, you know, I've known you for some time now and it's very reflective of how you work and the space that you're working in, and I just think what a beautiful legacy.

Mm-hmm. Um. You know, your uncle has provided the world by you being involved in this space. So thank you so much. Um, and it was lovely to hear Kaitlyn, how your mom told you exactly how it is and didn't, you know, didn't lie about what's going on and told you the situation and also framed it as well.

We have to be careful around Andrew for his health. It wasn't, it wasn't because of. Your potential risk, which sometimes happens. Hmm. Um, you know, when family are trying [00:42:00] to explain it, especially to children, it's like, oh, we, you can't have a cut finger around so and so, you know, it's, it's, it was very important to have it, that it's, we are at risk to him. I thought that was really special. Um, and yeah, an amazing group of support family in, in your uncle's life Kaitlyn, like that was just amazing. Thank you so much. Um. And for sharing, you know, his thoughts of suicide during that time.

Um, yeah, that, that , unfortunately is something that happened a lot, um, to, to folks who were dying, from their AIDS related illnesses. Um. Because It, it was just so hard and you know, Andrew obviously had a lot of support from the family there. There were folks who had none , who were [00:43:00] disowned. Um, and unfortunately too, even healthcare workers at times were really harmful and unsupportive.

You know, I'm sure we've heard those stories of nurses leaving the lunch at the door, at the ward door, not taking lunch in. Yeah, a really horrible thing. So, um, I'm really glad that Andrew did not have that experience.

Mm-hmm.

Um, Kaitlyn also mentioned in her story there about PrEP and PEP um, which I think I'll, I'll just quickly address, um, being medications for, people who, are HIV negative, to take, to prevent having HIV transmission. So PrEP is, um, a course of medication that people can take before potential exposure to HIV. Um, and PEP is post-exposure prophylaxis, and can be accessed via, [00:44:00] emergency departments and large sexual health clinics. And that's for people who feel they have had. HIV risky situation.

Um, it could be, um, sex without a condom. It could be, after a sexual assault. It could be if they've had a, a needle stick injury. Um, and it has to be taken within 72 hours. There's plenty of information online, for those . Um. And Kailyn also touched on the medication that is available for people living with HIV now, I mentioned it earlier how the medication can , get people down to an undetectable viral load, which means the, the levels of HIV in their blood are so low that HIV tests won't pick it up.

Um, they still of course, have the virus, but they cannot transmit it to anyone else because the levels are so low . Um, of course if someone, stops taking that [00:45:00] medication, then the viral levels would come back up. But, people living with HIV now on undetectable viral loads, are able to live very long and healthy lives. Um, and at times, people living with HIV are actually healthier than the general population because they have to be so careful about things, that they're, they're actually really healthy, um, like diet, exercise, other, conditions that they might get over time as they age, um, can play with their HIV medications. So there's a lot of monitoring that goes on.

So I think it's really important for the health system to not have stigma towards people living with HIV, um, it can really impact their, experience, on getting extra assistance for other things that might happen especially as they age.

But yeah. Fantastic. That now, um, the stigma has been lowered [00:46:00] because of PrEP, PEP and Undetectable viral load. It still of course exists and it still definitely is present within, you know, the gay, bi, queer men community, um, you know, some of us have seen online, uh, PrEP users only looking for other PrEP users, which is kind of not the point of it.

Mm-hmm. Um, so yeah, there's still a bit of that that goes on and bit of education that needs to happen within the community itself. But thankfully people living with HIV on non-detectable viral load, um, it, it's less of a burden, in sharing that information, especially when community members are educated about what that means and knowing that having a sexual relationship with that person is no risk to them.

Um, so it is really great that we, we have reached that space, but still a lot of work to do. [00:47:00]

Maddy Stratten: Sure. Yeah. And I think, um, you know, my mind's already going to our 2026 episode On The Couch, next season and, and what that could look like to continue that education. . But I just wanted to also mention that, Kaitlyn asked me to share about, how when her uncle was living in London after his diagnosis, he was, uh, really active in giving back to the community. Um, and I know that that is something that happens a lot, with people after their diagnosis. And, and I think it really shows, in particular for Andrew, his character and strength. Also wanting to mention that Andrew was the last remaining survivor, for the clinical trials with Professor Cooper.

Um, and so I feel as though they're, real big, moments to share, to add to Andrew's story. Um, so thank you again, Kaitlyn and, your family for continuing the HIV conversation. You know, all these years after, Andrew's passing. [00:48:00] So, it's really great to see.

 Um, As we start to come to the end of our chat on the couch I wanna leave some space, for you, Josef to share any last thoughts with our listeners, to continue to engage in this conversation and build our own capacity to be knowledgeable and confident, uh, to create space for the HIV conversation. So it's one that we mustn't forget regardless of what area of work that we're in.

So I'll hand over you to kind of leave us with some final thoughts.

Josef Garrington: Yeah, sure. I, well, I think, the listeners today and, in the future are already doing that step, listening to stories is one of the biggest ways that you can learn about something.

Yeah.

Um, putting it into a person's reality, really, for me, especially anyway, makes it , so much easier to understand because you can put yourself in someone's shoes and [00:49:00] go through the motions and think about how you would behave, how you would act.

So I encouraged all of you to do that in a, in, in other areas of life as well, not just around HIV, anything that is stigmatized. Um, listen to people's stories. Often we're afraid of something because we don't know about it, and when you know about it, you're not afraid about it. When I moved to Sydney, I was petrified of having sex with another man because of HIV.

And I got to a point where I just thought, no, I need, I need to educate myself on this. And that's how I got connected into ACON and access the workshops that, that we still run today. Educating yourself is, is the biggest thing that you can do to reduce fear and stigma . So, go out there, listen to more stories.

If [00:50:00] there's something within the human experience that you don't know too much about, have a listen to real people's stories about it, and you'll come away knowing a lot more.

Winnie Adamson: Thanks for listening to On the Couch. We create this podcast because we are allies in actively challenging discrimination, microaggressions and exclusionary behaviors.

Maddy Stratten: We wanna create spaces where people feel safe to share their thoughts, knowing that they'll be heard and respected. Such an environment fosters collaboration, innovation, and contributes to a more inclusive society.

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Winnie Adamson: On the couch is made by the team at Caddy Shack Project.

Until next time, peace, love, and protection.