Russ Gluyas
So it becomes like a re traumatisation and often spoken about as going back into the closet. So they've come out of the closet. They've finally lived their lives with some freedom and choice and gay abandon. And now they're faced with a situation where they have to be secret again about who they
Nadine J. Cohen
Welcome to Grave Matters, a lively look at death.
Anthony Levin
All of us at Grave Matters would like to acknowledge the traditional owners of the land we are recording from. We pay our respects to the Camaraigal people and their elders, past and present. We also acknowledge the traditional owners from all Aboriginal and Torres Strait Islander lands and other
first nations territories from which you are listening.
Nadine J. Cohen
A warning. This episode contains references to death and other themes related to dying, including the AIDS epidemic, dead naming and anti LGBTQI violence. Please take care.
Anthony Levin
Nadine J. Cohen. Good morning.
Nadine J. Cohen
Anthony Levin. Kia ora. Okay, I'm trying something. So, Lev, you know your way around a nursing home or aged care facility?
Anthony Levin
I do indeed.
Nadine J. Cohen
Even though you remain as youthful and as pretty as the day we met? Some. What was it like 26 years ago?
Anthony Levin
I feel pretty. Oh, so pretty. I feel pretty and witty and gay.
Nadine J. Cohen
So sorry I opened that door.
Anthony Levin
You know I played Tony in West side Story.
Nadine J. Cohen
I know. I saw. I was in that audience.
Anthony Levin
What you didn't know was I was also the understudy for Maria. Anyway, sorry, back to your question.
Nadine J. Cohen
That is a show I would like to see. So both of your lovely grandmothers were in aged care facilities until their very recent passing?
Anthony Levin
They were. As was one of yours.
Nadine J. Cohen
And do you ever worry that they were treated differently or cared for less than others because of aspects of their identities?
Anthony Levin
Not really. They were both very fortunate in that they were in facilities with excellent care, but. So I didn't worry about that. I did worry about my late grandfather who passed away nearly 20 years ago, and there were things about his care in the facility he was in that I did worry about. Yeah.
Nadine J. Cohen
Yeah, that's super common. And while widespread reforms have been implemented since the horrific findings of the Royal Commission into Aged Care were handed down in 2021, the industry is still battling systemic issues. Entering care can be scary for anyone, but for some people, it can present extra
challenges, with identity markers such as sexuality, religion and language, affecting the way some individuals are treated and cared for. In today's episode, we ask, what are the unique challenges facing the LGBTQI community when it comes to ageing, death and dying? And how can we help ageing and
terminally ill members of that community navigate this space safely and with confidence?
Anthony Levin
So, Nadine, have you ever thought about having a living wake?
Nadine J. Cohen
Yeah, I have, but I'll just say, for those listening, a living wake is basically your own funeral that you attend before you die, rather than people holding a funeral after. Or they can also hold a funeral after, and it can be as fun or as sombre as you want it to be. But generally, people who are
ageing or terminally ill mostly have chosen to start being at that party.
Anthony Levin
I was going to ask you, do you have to be dying to have a living wake?
Nadine J. Cohen
I don't know what the rules are or who guards the rules, but I guess not. But maybe elderly people could do it who aren't technically. I mean, we're all dying in a way.
Anthony Levin
Oh, that's. That's deep. But I suppose you want to be in your prime for the best part of your life. But also, it's a bit awkward if you're like, hey, guys, I'm not dying, but come to my living wake
Nadine J. Cohen
Just have one tomorrow.
Anthony Levin
How many can you have?
Anthony Levin
Is there an upper limit?
Nadine J. Cohen
Maybe every year for my birthday, I'll have a living wake from now on because I don't like celebrating my birthday, which is a thing, but I could enjoy celebrating myself entirely and my life.
Anthony Levin
And you love a good dress up.
Nadine J. Cohen
I do love a good dress up. So, like, I think, yeah, maybe. I don't know. I think my hesitance to have parties in general where I am the central focus, may prevent that, but might be a barrier. I don't know. They look really fun.
Anthony Levin
They do. I keep thinking of that Curb Your Enthusiasm episode where one of the characters has a living wake and he's just upstairs in a bedroom while everyone is downstairs at the ceremony and he's watching a live feed. That would be what I would want.
Nadine J. Cohen
Yeah, I think that's great. Well, today we're speaking with Russ Gluyas a counsellor and psychotherapist specialising in relationships, sexual and mental health and LGBTQI issues, including HIV and life transitions. Russ is also the programme coordinator for ageing at ACON previously known as the
AIDS Council of New South Wales. He is deeply passionate about supporting and connecting ageing members of the queer community through ACON Ageing and palliative initiative, the Love Project. Russ Gluyas welcome to Grave Matters.
Russ Gluyas
Thanks, Nadine. Great to be here.
Nadine J. Cohen
So you work for the Love Project as part of ACON
Russ Gluyas
That's correct.
Nadine J. Cohen
Can you tell us a bit about both of those organisations?
Russ Gluyas
Yeah, absolutely.
Nadine J. Cohen
And what you do for them?
Russ Gluyas
Absolutely. It's good to start with ACON celebrating 40 years this year. ACON formed as a direct response to the HIV epidemic in the 80s. So 1985, the community came together to really set down roots for ACON And for many years, ACON was for the prevention of HIV and the support of people living
with HIV And over the years it's grown to a broader LGBTQ health organisation. So there's a lot under the ACON umbrella. Our core funding and activities are still for HIV support and prevention, but now, sort of 40 years later, there's a project for women and there's a project for Aboriginal and
Torres Strait Islander people, family and domestic violence. So there's all of these other programmes and that's where the Love Project sits, living older, visibly and engaged. What underpins the Love Project is social connection, because we know how important sort of social connection is for health
and wellbeing. But I guess for our community, sometimes it is harder to find safe environments to come together in.
Nadine J. Cohen
And it's New South Wales specifically.
Russ Gluyas
Yeah, we're a state based organisation. Some of the work now is national, but over the majority of those 40 years it's been a state based organisation. So we have incredible outreach teams that do outside of Sydney. We have offices in Newcastle and the Hunter and one in Lismore.
Nadine J. Cohen
And do some or most other states have equivalents or similar?
Russ Gluyas
Yeah, there are equivalent organisations, not in all states, but I think ACON perhaps is the most recognised and has the strongest longevity and government support. And the depth of the work that ACON do overall is quite phenomenal.
Anthony Levin
Russ, it'd be good, good to get a sense of what ageing looks like for the LGBTQI community, for example, what sort of challenges and discrimination they face when they're accessing inclusive quality healthcare and aged care. So what are the unique challenges that people face in that community?
Russ Gluyas
So to answer that, I think it's good to have some perspective of sort of lifespan. And for me, I'm 62. Everyone that I work with is older than 62, so they've lived a very different life, not only from mainstream or heterosexual sort of populations, but their life experience has been really
different. I like to sort of think sex between men was decriminalised in 84, so I was 22. I'd obviously been going at it before that. Obviously, obviously, yeah. Maybe not obviously, but I was. Yeah. But I kind of like to remind myself of that little point that I was 22 before I could do it legally.
So there's a whole generation of older people that live their lives sort of in secret, obviously i still got on with it, still did it, but things have changed a lot. So there's this lived experience of discrimination and stigma, hate crimes, generational trauma, sort of abandonment from families,
all of this sort of life that they've lived, that then once they start to get older and then look at aged care, it's quite terrifying, really. They can take into that aged care experience these experiences of discrimination and stigma and sort of not being able to access services freely and openly
and services that are inclusive. So it becomes like a re- traumatisation and often spoken about as going back into the closet. So they've come out of the closet, they've finally lived their lives with some freedom and sort of choice and gay abandon, and now they're faced with a situation where they
have to be secret again about who they are. And aged care traditionally is not an environment that's open and inclusive, where incrementally, I think, getting there, small steps towards better services, but I think it's a nightmare to navigate. But if you sort of place yourself in the body of that
person that's been through this experience and then have to go into a service that's not that friendly, it can be really awkward.
Anthony Levin
Yeah, I can imagine. And you mentioned this off air, but one of the reasons you were saying is that it's not just the institutional culture that you're perhaps confronting. Even if the institution itself declares itself open and inclusive, there may be people in the workplace who bring their own
personal religious biases to the work and don't necessarily, you know, live up to the aspiration or the aspirational culture of the organisation. So you're getting daily interaction with an aged care worker that might still put you back into an experience of trauma.
Russ Gluyas
Absolutely. Two points there. The first one I just wanted to pick up on, which is part of the changes for the new Aged Care Act that's coming out soon. Was your comment about if they are inclusive? That's often not the case. They might sort of. Many services will say that they're LGBTQ inclusive or
welcoming, but actually keeping organisations accountable and keeping the standards for what that is all about often isn't the case. So people can say they're one thing, but they're not often always that way. And then the second point
Anthon Levin
about people. working in those jobs, what do they bring?
Russ Gluyas
Well, a variety of people coming from all over the world. Great. That they're doing aged care studies to work in organisations, but often bringing their own beliefs from various countries that they're coming from.
Nadine J. Cohen
According to a 2021 report by the National Skills Commission, 40% of Australia's care and support workforce were born overseas, a number that had been steadily increasing over time.
Russ Gluyas
So there's this sort of idea of all this is what my belief is and will I bring it into my work? And if I do have to be faced with a gay or lesbian or trans person, how am I going to navigate that sort of territory? What am I going to do? How am I going to react?
Anthony Levin
Yeah. And by no means do I intend to malign the very hard working people who are doing that work, because I've seen them and I've done some of it myself and I know how hard it is. But it's just a reality of the lived experience that there will be conflicts between values in that environment.
Nadine J. Cohen
And something we also talked about off air is people with dementia going in. And that presents so many unique challenges, both for the person themselves and for their partners, their chosen family.
Russ Gluyas
Yeah, absolutely.
Nadine J. Cohen
Or their biological family as well.
Russ Gluyas
Yeah. Well, if dementia's so difficult anyway, for everyone, it's certainly something that you don't wish on anybody. But to throw that lens of LGBTQ lived experience across the dementia lens as well, really kind of muddies the whole picture, and particularly for our trans communities, if they've
chosen to live authentically as the person they are in the world, and then unfortunately, get dementia, have to go into care. You want those people to be cared for just the same as anybody else. You want them to be respected and recognised. You want them to have access to the medications and
healthcare that they need. So there's so many layers to the dementia question, and when it comes to a queer community member, it just gets more complicated.
Nadine J. Cohen
And I think that's the issue that we're talking about today, is that aged care and palliative care and all of these things are difficult for, for most of the population. And then you add queerness or you add Indigeneity or you add these other things and it just makes it even harder for them to
access services, to live their truth and all of these things that go with it.
Russ Gluyas
Yeah. Absolutely. We also. The queer community also has sort of higher, well, health disparities, so higher rates of sort of mental health, anxiety, depression, suicide ideation, levels of isolation, people being more isolated, having lost partners, perhaps not with sort of families, biological
families, they're living with families of choice. They're older. A lot of people through the HIV epidemic have lost a lot of people. So when they get to older age, there's sort of limited connections, limited supports. So there's all kinds of.
Nadine J. Cohen
Especially not in Sydney and not in urban settings and semi urban or semi rural or fully rural areas.
Russ Gluyas
Yeah, absolutely.
Anthony Levin
And does this result in a shorter lifespan on average for people in the community?
Russ Gluyas
It does. Overall, yeah, it can. Particularly for women. The impacts of sort of not having good health, not having good access to services, being afraid to sort of come into a service as your whole self, which is a big conversation that we often have someone being able to access a service and say,
well, look, I'm a gay man, I'm a lesbian woman, I'm trans male, whatever it is. Being able to bring your whole self into a service and then being able to receive a service fully is often more limited. So that will reduce a lifespan.
Nadine J. Cohen
So, Russ, how do ACON and the LOVE Project help, support and advocate for the rights, dignity and choices of LGBTQI elders?
Russ Gluyas
Look, there's a small but incredible policy and research team. We're often submitting to inquiries or Royal Commissions. For example, a fairly substantial submission to the Royal Commission into Aged Care just recently. And in doing that, we can highlight and amplify all of what we've been talking
about. So it's essential that people understand what our lived experiences are about, so that can then be put into changes. Things like, we've always been a strong advocate for voluntary assisted dying. Having lived through the HIV epidemic, a lot of community members were looking for alternative
ways to complete their lives without going through devastating deaths. We've recently submitted to New South Wales Parliament in regards to loneliness and the epidemic of loneliness that's increasing for everyone, but can be exponential for our communities. So, yeah, we're active in advocating and
sharing what the experiences are of our community. There's not enough data about our communities in all of these services and all of these submissions and committees. So it's often about sort of really pushing to see where we can get ourselves recognised in data so we understand what health outcomes
Anthony Levin
One of the things I was really interested in hearing from you about is how we can inverted commas queer our approaches to the funeral space or to death. And dying.
Russ Gluyas
The funeral space is really interesting. Perhaps there's not been a lot of change, but I work in this sort of LGBTQ bubble, so I'm very fortunate to be connected to so many wonderful people in the funeral business that are delivering queer friendly, specific services. And we get to work with them in
the work that we're doing, the palliative care, end of life work we're doing. But I guess traditionally and interestingly, I was at a funeral this week for a school friend, and I went to one of those big funeral homes that I'd been to about 12 months ago for another funeral. And it was a beautiful
funeral. Faith was a beautiful woman, very cared for, left a beautiful legacy. But as I was sitting through the funeral, it was very generic. It was very kind of cookie cutter. We say this, we do this, we show the pictures for five minutes. You're only allowed sort of 60 pictures or whatever.
There's music and all the time I was sort of thinking, oh, my God, I could do something so different to this. And people are starting to do that. We do have some services that are offering very inclusive LGBTQ funeral endings and services, including the final funeral, whatever that might be. And I
think we do teach the broader community that it can be much more than this sort of corporate cookie cutter style of funeral.
Nadine J. Cohen
Something that I have witnessed that is purely a non scientific observation is the take up of living wakes in the LGBT community. And I've seen a few online that friends have gone to. I feel like I want to be at that party.
Russ Gluyas
Absolutely. Well, that's like. It's another way of going out. It's another alternative. And yes, there's been some really beautiful living wakes and people have worked with the right people to make that happen. So, yeah, like, why not have that before you go and then perhaps have something smaller
when you're gone. And then people get the chance to come together and talk and drink and be happy and dance and do whatever you want.
Nadine J. Cohen
Honestly, I've had FOMO.
Russ Gluyas
Yeah, absolutely.
Nadine J. Cohen
DJs and cocktails, and it's just some. I think one that I saw had more of a Dia de Muertos Day of the Dead kind of vibe. I just. I love it.
Russ Gluyas
I have a quick example of a beautiful community member that passed away two years ago that I was quite close to, and the community was quite close. And Jackie was a feisty, gorgeous, older lesbian and had come into the project during COVID actually, when we were doing stuff online. But Jackie was
always very forthright and opinionated and kind of loved what the Love Project was doing. And because we'd already been having these conversations when Jackie was diagnosed and knew that she probably wouldn't make it, she wanted to start having the conversations about what her funeral would be like.
So she kind of wanted it to be at the Glebe Town Hall and she wanted vodka and she wanted drag queens and she wanted her coffin there so people could draw on it. And she sort of gave lots of materials for people to sort of create the coffin and make it beautiful and colourful. And she wanted me to
emcee it, which was really lovely and the first time I've ever done that. It was such an honour to be able to sort of do something for someone that's asked you specifically to be a part of kind of their end moment.
Nadine J. Cohen
Yeah, I mean, this is very much the wellhouse of the show in general, or at least in season one, we talked so much about, how can it look different for everyone?
Russ Gluyas
So it is about broadening the conversation. And especially for our communities, we do do things a bit more colourfully. We do like to party a bit more. Like, even at Faith's funeral the other day, as I was getting dressed that morning, my partner said, oh, do you think you should wear that? What do
you mean? And I found myself sort of stepping back a bit from that, knowing that I was stepping into a sort of sort of Faith's world. But then I kept thinking, oh, if Faith's looking down on me, she'd probably say, oh, that's how I love you. That's how I want you to be.
Russ Gluyas
So there was this interesting moment of like, oh, this is what I think, how I have to arrive to this funeral, but this is how I actually want to arrive. And this is how Faith would probably enjoy me being there.
Anthony Levin
I mean, how do you think that other people in the community will navigate that going forward? Like, how much progress are we making with this stuff?
Russ Gluyas
I think the more we talk about it, the more we have the conversation, the more people know there's an option.
Nadine J. Cohen
We heard the Love Project had started hosting Death Cafes. Listeners may recall from season one that Death Cafes are small gatherings where people can ask experts questions related to death and dying. We asked Russ about that.
Russ Gluyas
So we're doing online and in person webinars and events, talking about legal advice, talking about advanced care planning, talking about palliative care. And one of the activities in this suite is what we are calling death conversations or community death conversations, modelled a little bit from a
death cafe, but perhaps a little bit more than just the cafe style and the cafe model, trying to sort of engage community. What we do, as we do with everything that we do, is we create a safe, welcoming space for LGBT people to come into and know that it's for them. And whatever they say, it's going
to be a shared experience. So we've recently, just in the last month, done two conversations. One in Brunswick Heads, one in Sydney. Sydney felt perhaps a little bit more practical, and I suppose Brunswick was feeling a little bit more on the emotional side and sharing stories, but beautiful story
of two older men that had been friends for a long time. One was older, one was a little bit younger. The older one's health wasn't good and was terrified to kind of lose the younger one first because the younger one had been a big support for him and sort of wanting to understand, well, what can
they do? How can they prepare better? So both of them moved forward with a bit more sort of assurance and safety and happiness, I guess.
Anthony Levin
So when it comes to palliative care for LGBTQI communities, how well are medical and care professionals trained in cultural safety?
Russ Gluyas
I think we've got a long way to go in palliative care, but it is starting to creep in where palliative care end of life staff are starting to understand what LGBTQ experiences are like and how they're different. And I think the changes come from training and education. It's this ongoing process of
people being upskilled, understanding that there's different sort of cultures, ways of being in the world. So, yeah, I think it's getting there. It's got a long way to go. But really, it's about the more you educate people, the more they have an understanding of what different people's lives are
about. And understanding, like, we've spoken about, like, what's the experience for an older queer person going into palliative care? Why is it gonna be different? Cause they've lived a different life experience. And if you don't know that, if you've never met an LGBTQ person or had someone in your
family or whatever, it may just be something that's not in your wheelhouse at all. But it's very important when it comes to end of life care. You know, you want to be looked after and cared for in the best possible way with the most respect and dignity, just like anybody else.
Nadine J. Cohen
And I think people within the community, at least, distrust and mistrust of the medical profession as well as the law. And someone needing to have palliative care is so vulnerable, you know, so. So vulnerable.
Russ Gluyas
Absolutely. And if you're navigating that by yourself too, if you don't happen to have a partner or family of choice or even biological family. But, yes, there's been a lot of distrust of the medical system and services from the LGBTQ community. So moving forward, like I said, there's this. It may
be better for younger people. There's still fear there of being out at all, coming out.
Nadine J. Cohen
We're not living in a perfect society.
Russ Gluyas
Absolutely. Yeah. It's never good. So there's a long way to go. Yeah.
Anthony Levin
And, I mean, Nadine and I can really relate to this in a way, from a slightly different perspective. Both of us have had close relatives in aged care and. Or palliative and. and something that's very common in the Jewish community for elderly members of that community is if they're Holocaust
survivors and they go into aged care and they begin to suffer from dementia, they will have flashbacks, and they will experience times when they think, as my grandfather did, that they are back in under Nazi occupation. So those are things that people working in aged care need to know in an
equivalent sense. You'd need to know, for example, that someone had lived through the kind of Stonewall era of 69, and that when they get to that late stage of life, they might flash back to that time.
Russ Gluyas
Absolutely. Yeah.
Anthony Levin
I'm talking here about the 1960s Stonewall uprising. At the time, Queer people in the United States and Australia faced systemic police harassment, and bars like the Stonewall Inn in New York City were among the few places they could gather safely. Police raids were still common, however, and on
June 28, 1969, one such raids sparked days of resistance. It also ignited a new wave of LGBTQI activism, which led to the first Pride marches the following year.
Russ Gluyas
And look, it seems like a lot that you're asking of an aged care person
Anthony Levin
Yes, that's a very good point.
Nadine J. Cohen
You need to be sensitive to every single part of person identity.
Anthony Levin
Read your history books.
Russ Gluyas
Absolutely. Yeah. But that has to be part of induction, has to be part of training that there are different worlds and lives out there and to have some awareness around. Well, if you don't know, maybe understand more, learn a little bit more. But you're absolutely right. Like having those flashbacks
to those pivotal moments that were so important for whatever the community is. Yeah, well, I guess the extremes sort of in our community that I've sort of just popped into my head is at the worst extreme, it would be having lived through a hate crime many, many years ago. And if you relive that in
that period of dementia. And the other side might be, if you've been a drag queen and been this fabulous performer, but not perform for a while, or both. Yes, you may go back into that and you'd want to honour sort of whatever that person's story is in the most sensitive way. Well, that's that
difficult thing about dementia too. There's such a spectrum of sort of how people are going to be in that space. You can have the calmest people through life and then they kind of get really aggressive and vice versa. So it's a really difficult place, but I think one that we really need to do a lot
more work and there is a lot more work and projects happening for our communities in that space, knowing as we've talked about the difference in that lens that we put across everything. But yes, absolutely. Even more so for the dementia space.
Anthony Levin
What role do ACON and the Love Project play in improving the safety of these environments? Do you go out and talk to, you know, aged care facilities, hospitals, healthcare workers?
Russ Gluyas
Not necessarily go and speak to them, but there's a couple of programmes within, under the ACON umbrella. So there's Pride training and they develop training kits for organisations like Aged Care that help upskill the staff in that lived LGBTQ experience. So there's one specific to Aged Care, so
that can be rolled out to an organisation and reach 100 people if necessary. So they can buy that package. And it's a minimal, it's sort of a benchmark, it's a starting point, but at least it might be something that they can include in induction for new staff, so they get an understanding of what
queer experiences are all about. The other option that people can access through ACON is the Pride inclusion programmes. So they work with organisations to support them, to become more inclusive in all of their policies and the way they run their organisations. So they're there to sort of they
become members and they get a quota of sort of time with the Pride inclusion teams to work on what it means to be an inclusive, safe organisation for everyone.
Nadine J. Cohen
I wanted to talk about dead naming, if you could explain what it is and how it relates to the community, but also how it manifests in end of life, in funerals, in gravestones, in memorialisation.
Russ Gluyas
So dead naming is something that happens or can happen in the trans and gender diverse communities. So someone has transitioned to the person they authentically know they are and want to live their life and walk through life as, and they may have changed their name. Dead naming is the old name, so
it can be very offensive and very hurtful. If you've made a clear decision to transition, to be that person and you're owning that person and you have a new name, the dead name can be very offensive. How that plays out, I guess, in stories of death and dying, is if that dead name is brought back in
for whatever the reason, the biological family might not have accepted the person for who they are and they just insist on using the dead name. That can be really cruel and hurtful, but that can play out, I guess, through whoever organises that end of life or funeral part of that person's life. If
they bring that name in, same thing. It's not who that person is. And I just, this is one thing, I just don't get that, why people insist on thinking that the person is who they want them to be rather than just embracing them for the person they are.
Nadine J. Cohen
And it's not just the funeral and say, gravestones, it's. If a family is responsible, whoever's responsible for someone in palliative or in aged care and that person says their name is this.
Russ Gluyas
Well, that can happen. And people not being identified as the gender that they are living as and the name that they want used. So, yeah, that can be problematic, for sure. If you're gonna go in and sort of see someone and assume that they're something when they're living their life as something
else, then, yes, it's an ongoing. Again, it's training, it's education, is people having a solid understanding of what the community is all about and all the different facets of who we are. But, yeah, the trans dead naming is not a good thing at all.
Nadine J. Cohen
No, no, I heard. I did hear one situation when I was reading about all of this, that it was a situation where a younger person died. And I don't know how young, but a younger person who had transitioned and was living their truth and the parents couldn't. Like, one of the parents wanted the
gravestone to be in their dead name.
Nadine J. Cohen
And one of the parents wanted it to be. So they have two memorials for this person.
Anthony Levin
Two headstones.
Nadine J. Cohen
Two headstones in different places, different sites.
Russ Gluyas
Right. Yeah. Look, I think there's still a way to go with sort of everyone understanding what the trans experience is. But at the end of the day, I always sort of come back to, it's not about you, it's about the person. This person has chosen to be in the world and walk through the world and walk
outside every single day as this person. So to be called someone else or to have that experience happen. Yeah. Is not kind at all. There's a lovely story about one of the palliative care teams that was working with a younger trans identifying person with a disability and them working so hard to
honour a bucket list for this person before they went. And it was just so gorgeous that this palliative care team did so much to really honour all of the requests of that person and one of them was for them to be at Mardi Gras. So I think it was two years ago that they did make it to Mardi Gras
before they passed away, but they were living their transness, they were living with a disability, they were queer and having a fabulous time.
Nadine J. Cohen
Oh, look. Shout out to palliative care workers. we've worked before. We both had experiences in the hospital and with that home palliative as well. Best people you'll meet. We wanted to go back to ACON's foundations and their HIV AIDS crisis. And obviously the people who lived through that in the
80's are. A lot of them are elderly now. And ACON was founded as a direct response to the crisis. And your organisation continues to strive to be a global leader in community health, which it has established itself, community health, inclusion and HIV responses, and still striving for an end to
transmission entirely. What legacies of the AIDS crisis are still shaping how LGBTQ communities think about death, grief and care?
Russ Gluyas
Look, it's a great question. I think it's really important because I think having lived through the epidemic, and I was diagnosed also in 89, so I've lived more than half my life with HIV and was one of the lucky ones that made it through. But having lost so many people during that time,
particularly sort of 85 to sort of 95, I think we were reacting to a situation that was devastating and we needed to have as much knowledge and as much choice as we could to support people and for also people to make choices in their end of life. And that's why we have always been sort of active and
advocating in that VAD space as well. It wasn't available back then, but it was certainly something that people wanted to have the option for
Anthony Levin
By VAD RUS means Voluntary Assisted Dying, a practise that allows certain people to choose to end their life with medical assistance. As of November 2025, VAD will be legal in all Australian states and territories except the Northern Territory, though with strict eligibility criteria. We'll get into
that more in the next episode.
Russ Gluyas
So I think just with that whole environment of extraordinary loss and extraordinary numbers of losing people, that's a legacy of death and dying that we've taken with us. And I think people understand. Well, look, we've all had a friend that we've needed to sit in a room and have that death and
dying conversation with, especially older community members that I work with. So I think that bleeds into the work that we do now in death and dying. It bleeds into our strong advocacy for VAD right up until the point that it was made legal, but also now in regards to choice and how we go out, how
do we have the best end to our life? What knowledge do we have to make it better or easier for ourselves and for our families of choice and people around us? So I think, yeah, it's bled into the work that we do now, particularly palliative care, end of life stuff that we're doing. But it's a strong
historical generational trauma, death and dying story that is just part of the picture that you can't deny.
Nadine J. Cohen
Did Covid perhaps educate a lot of the greater community about what happened in the 80s in a pandemic sense, and in the fear and in the reactions of the health community and of various communities. Like, was there any benefit in terms of education of us going through that?
Russ Gluyas
Oh, look, I think definitely, I can't speak academically to it, but my observation and my understanding is that because of the incredible response to HIV and we're very lucky to have two governments that stood together in that time to create a space where community could come together and they were
supported to get one of the best outcomes, even though it was traumatic and devastating, one of the best health responses to HIV in that time. And I think they solid templates for how we do things as we move forward. So I think when Covid hit, there was models that were already there for how the
Ministry of Health work and keep people safe and educated and treat people the best way possible.
Anthony Levin
What role does chosen family play in death and dying? And how can our systems better acknowledge those relationships?
Russ Gluyas
Oh, look, they're incredibly important for our communities. So many of us are disconnected from biological families, so we, we have chosen families. We have people that we gravitate to, not to generalise, but many of us have moved away from perhaps small towns, come to cities. These are the people
that we move forward with in life. So they're our chosen family. So it's incredibly important at all stages of life. But can you imagine, sort of at the end of life, you want all of those people around you, want those people to be supporting you, you want your partner of choice to be in there? So,
yeah, I think it's incredibly important that everyone understands that it's not all about biological family. Some of us are lucky to still have that biological family in our journeys, but many aren't. So people that we've chosen and moved through life with are really important, particularly at the
end of life. I think that probably needs to be also more understood by all services when it comes to end of life palliative care choices and that period of your life that it won't necessarily be the mum and dad that step in or the brother.
Nadine J. Cohen
Well, that's where things like advance care directives and guardianship plans really can come in, of saying, this is the person that I want to make all my decisions Like they're not next of kin. Yeah, but that's my person. This work is hard.
Nadine J. Cohen
We both do advocacy work in different areas and we know that, you know, it can be challenging at times. It can be, you know, it can be really frustrating and depressing.
Nadine J. Cohen
At times. And there. But then there are the. The wins, which are incredible. What keeps you going in this work? You know, what gives you hope?
Russ Gluyas
Look, I think even from a young child, I've been a bit interested in death and dying.
Nadine J. Cohen
One of our people.
Russ Gluyas
Yeah. Yeah. I don't know what it is, but I've always been fairly candid and I have great conversations, even with my mum, about death and dying. When I re educated as a counsellor, my practise was sort of existential focused, so there was a lot of kind of meaningfulness and death and loneliness in
that sort of construct of how I work with people. Just having the opportunity to work with, particularly the older community. I know this is for everyone, but particularly with the older community, that gives me a sort of a sense of purpose and joy and I'm a little bit behind them, but that's
probably good too, that I'm just not as old as them. But it's given me great perspective on what it is to be an older person and how you are in the world as an older person. And don't get me started on ageism and all of that topic, but I think it's easy to be in this space and being very relational
in my approach too. You can't not be affected by someone's story or not touched or a little bit sad. That's just, That's the nature of life and what we do and hopefully I know I have processes to step away from it and debrief and have supervision and just get away. So, yeah, I think it's a real joy
to be moving even deeper into this space as I get older. And hopefully by the time I go, I'm going to be really comfortable with all of this, but also be able to sort of translate it to other people too. So, yeah, look, I think it's a joy to work in this space.
Nadine J. Cohen
Amazing. Okay, so looking at when you're a little bit older.
Nadine J. Cohen
A lot older, hopefully.
Nadine J. Cohen
And it's wonderful and amazing that you are still here. You're on your deathbed.
Nadine J. Cohen
What little confession do you throw out there?
Russ Gluyas
Oh, I was thinking about this.
Nadine J. Cohen
What are you gonna say?
Russ Gluyas
Some of my friends won't think this is surprising, but I remember there was a time that I used to like to get dressed in mum's dresses. So when they were out. This is so gay. But there was one dress in particular was like a satin royal blue.
Nadine J. Cohen
How old were you?
Russ Gluyas
I guess I would have been about sort of 13 or 14. And it was like a satin royal blue miniskirt with ostrich feathers around the base of it. And it was just kind of everything. And I think that was the start of my kind of dress up sort of phase. But it was like I was doing something so foreign that I
thought it would always have to sort of stay kind of suppressed.
Nadine J. Cohen
And were you aware, like, had you thought about your sexuality?
Russ Gluyas
Not this, not really. I think I didn't have language for it. I wouldn't have had sort of vocabulary back then to sort of know what it was like. I think from a very early age I realised I was same sex attracted, but didn't know what that was really. But it was always there, common experience. It
wasn't something that sort of emerged later in life. It was always there. So I don't know if that's a confession or not, but I dressed in one of my mother's dresses and loved it, Absolutely loved it.
Anthony Levin
I love that you said it was everything. It sounds like everything.
Russ Gluyas
It was everything.
Anthony Levin
It was everything.
Nadine J. Cohen
The dress sounds fabulous and I want to wear it.
Russ Gluyas
It was the simplest thing and she kept it for a long, long time. And then when I did start to do a little bit of kind of dress up, draggy sort of stuff, I thought about that dress and I got it back from it. I was too big. I couldn't fit into it.
Nadine J. Cohen
A final question. What would you like your friend and family and chosen family and your tribe to say about you at your funeral?
Russ Gluyas
I'd like to think that they were able to say everything before I went because that's another interesting thing about funerals is people stand up and say, this person was this. And I noticed even with this friend's funeral this week, there were some really beautiful things about Faith said that I
kind of knew because I knew the person she was, even though I wasn't that close to her. But these people did say those things about her and that just sort of reassured me that, yes, she was that really beautiful human being that everybody loved and this is how everyone felt about it. So, look, I
don't care what they say, really. I'd hope that we can say all of that before I go and there's nothing left and just have a party, just enjoy. Yeah. I grew up in food. I was a chef for the first 40 years of my life and had restaurants and cafes and stuff. So I love sort of food. So I kind of want
mud crab and champagne and people just to enjoy themselves and for it not to be too standard and to be free to say whatever they want.
Nadine J. Cohen
Excellent. Well, Russ Gluyas, thank you so much for joining us.
Russ Gluyas
Thank you for inviting me on and I'm pleased that I could bring the queer experience.
Nadine J. Cohen
So that was Russ.
Anthony Levin
Yeah, I really enjoyed that conversation.
Nadine J. Cohen
Me too. Thoughts? Feelings?
Anthony Levin
My thoughts. I learned a lot about dead naming and I confess I did not know much about that before we spoke to Russ. It seems to me that for a long time trans rights have been ignored and excluded. So it's really good to hear that there is growing awareness about that issue and death is difficult
enough and entails enough emotional upheaval that you don't need the added trauma of dead naming when someone passes. So I really hope that in having that conversation that people can become more aware about it too and that it stops happening.
Nadine J. Cohen
Yeah, absolutely.
Anthony Levin
What about you?
Nadine J. Cohen
I completely agree with you. I've been mulling over just this idea of aged care workers and healthcare workers more general having to be educated and sensitive to every trauma that a person can possibly have in a facility that they're in. And that's not possible. We can't cover every single, single
trauma that every single person has. So. Yeah, then how can we create a dignity centred health system, which I think is what's happening, that allows for people's individual traumas to be cared for in a general way. So, yeah, that's something that I've been, you know, I think I've been thinking
Anthony Levin
Thanks again to the wonderful Russ Gluyas. In our next episode, we talk to controversial physician and advocate Dr. Philip Nitschke about the history of voluntary assisted dying. The future of end of life choices and pissing off the Swiss.
Dr Phillip Nitschke
We got members all around the world of our organisation, a lot of them in Australia, and they say, look, thanks for the laws that have come in, but we want control. I want something in the cupboard that I can go to and take and die and I control it. Now that's a very, very, very common request by
Nadine J. Cohen
If this episode has raised issues for you and you'd like to seek mental health support, you can contact beyondblue on 1300-22-46 36 or visit beyondblue.org au also embrace multicultural mental health supports people from culturally and locally linguistically diverse backgrounds. Visit
embracementalhealth.org for 24. 7 crisis support. Call Lifeline on 13 11, 14 or in an emergency, please call Triple Zero.
Anthony Levin
Grave Matters is an SBS podcast written and hosted by me, Anthony Levin, Nadine J. Cohen and produced by Jeremy Wilmot. The SBS team is Joel Supple, Max Gosford, Bernadette Fung, Namuyen and Philip Solomon. If you'd like to get in touch, email audiobs.com au follow and review us wherever you find
