Full Transcript for Planning Ahead With Pride: LGBTQ+ Communities, Chosen Family and the End of Life with Zoe Hinton

00:06:37.700 So it was a real, yeah, kind of moment of, oh, I know that this is the area that I want to be in. 00:06:37.939 --> 00:06:46.020 And then essentially when I finished my masters, it was just at the time that ACON was advertising this position. 00:06:46.259 --> 00:06:54.819 And I think also for a lot of queer people in in New South Wales, anyway, ACON's a bit of a like, you'd want to work at ACON often. 00:06:54.980 --> 00:07:04.259 And so I saw this role coming out, which was funded because of the New South Wales health funding that went out for for palliative care to a bunch of organizations. 00:07:04.580 --> 00:07:08.420 And I thought, oh my god, I've I've absolutely absolutely got to do this. 00:07:08.740 --> 00:07:31.860 So even though I kind of started off with just knowing that I want to work in palliative care in in any way, shape, or form, I've had a huge appreciation in my time here for really understanding kind of the nuances, I guess the differences that our LGBTQ plus community has in accessing palliative care, or even just the kind of conversations that we should be having. 00:07:32.020 --> 00:07:37.540 I think there's kind of this assumption that I had as well of, you know, well, we're all the same when we die, right? 00:07:37.700 --> 00:07:39.620 We all reach that end of life journey. 00:07:39.780 --> 00:07:43.140 But understanding, all right, well, what are some of the differences? 00:07:43.300 --> 00:07:52.100 It's not that one community necessarily needs different medicines, although that can be a part of it, especially for our community members living with HIV, for example. 00:07:52.340 --> 00:07:54.340 What does trauma-informed care look like? 00:07:54.500 --> 00:07:59.140 What are the little legal tips or paperwork things that we need to be extra aware of? 00:07:59.379 --> 00:08:03.780 Why is our community maybe not accessing palliative care early? 00:08:03.939 --> 00:08:06.259 Or what are some strengths that we have as well? 00:08:06.500 --> 00:08:23.620 My role's here to sort of be able to, I guess, bridge some of those barriers that that the LGBTQ plus community might have with accessing palliative care, but also thinking, well, what strengths are we bringing to this and and what strengths are community members bringing in their end-of-life choices as well. 00:08:31.460 --> 00:08:41.779 I'm the only person at ACON I can in this space, while we don't have capacity to kind of be, we're not kind of having clients who are accessing palliative care necessarily. 00:08:41.939 --> 00:08:52.100 It's sort of that health awareness and health promotion, I guess, in being able to spread the health information to community members kind of as a preventative mode of care, I guess. 00:08:52.419 --> 00:09:04.899 Some of the the barriers that there are or those nuances to access is a big one, is kind of what our family structures look like and what this is sort of involved in accessing palliative care. 00:09:05.139 --> 00:09:24.500 So I guess some of the obvious ones are, you know, are people, and this is a pretty round-the-board experience actually to community members I talk to is are you calling up or having conversations with your doctor and automatically asked, you know, what what does your husband, what does your wife think of this and the assumption of having an opposite sex partner? 00:09:24.819 --> 00:09:38.180 But there's also things like, you know, chosen family is a really big kind of focus in our community and has been, you know, in the early days of our community, accessing their own palliative care when, you know, perhaps it wasn't given as as freely. 00:09:38.259 --> 00:09:41.060 I'm thinking kind of specifically in the AIDS crisis. 00:09:41.300 --> 00:09:50.740 So chosen family is a term that is particularly used in the LGBTQ plus community to describe people who are your family by choice. 00:09:50.820 --> 00:09:56.180 And I think lots of us, you know, in the general Australian population as well can kind of relate to that. 00:09:56.259 --> 00:10:01.620 We we maybe have a best friend who who, yeah, of course, they're my family member as well. 00:10:01.779 --> 00:10:08.180 Um, but that term chosen family has really often people have been rejected by their family of origins. 00:10:08.340 --> 00:10:12.420 They might have experienced abuse or, yeah, had to flee for their own safety. 00:10:12.500 --> 00:10:18.019 And those people that become your family are the people who, you know, will show up and and support you. 00:10:18.100 --> 00:10:23.539 And those are often, they can be, yeah, friends, lovers, ex-lovers as well. 00:10:23.700 --> 00:10:29.860 I think that's sort of an interesting one that our mainstream society doesn't assume accesses palliative care with us. 00:10:29.940 --> 00:10:44.899 But I think you talk to any person in the LGBTQ plus community and there's there's an ex that's a really good friend and you'd want involved, you know, is how we're operating in systems that are heteronormative and monogamous normative, etc. 00:10:45.300 --> 00:11:00.899 Our legal structures, our paperwork of, you know, superannuation and things like that, that is operating in a assumption that you have one partner who you're likely married to, who's likely the opposite sex, and you have children who are your dependents. 00:11:00.980 --> 00:11:19.139 And so because we're working in these systems and paperworks and things like that that sort of don't put our family structures or our chosen family structures at the forefront, then there can be little things that I guess disadvantage people that that you may not realize until you're sort of in that situation. 00:11:19.460 --> 00:11:27.139 How common is it, Zoe, that you speak to people that find themselves exactly in those situations because they just weren't aware? 00:11:27.620 --> 00:11:28.899 Oh, it's really common. 00:11:29.060 --> 00:11:47.539 So part of my work with the Love Project, which is run by my

wonderful manager, Russ, and we have a monthly kind of social gathering at our Akon office on Gadigal Land that older community members come in and frequent and you know can get a coffee and have a yarn and everything. 00:11:47.779 --> 00:11:53.379 And so I have some some friendships in that yeah, in that kind of sphere. 00:11:53.539 --> 00:11:56.980 And yeah, you you hear from people, it it's really common. 00:11:57.060 --> 00:12:18.180 And I think even if you don't know someone yourself, you you all kind of know a story in community that I'm I'm thinking of a particular community member who was active in Akon, you know, had a partner for 20 years or so, you know, for different kinds of circumstances, they weren't kind of out about that person being a partner. 00:12:18.259 --> 00:12:22.019 And that's also really common and can be more common now older community as well. 00:12:22.180 --> 00:12:35.060 You know, I think it's important to remember that it was really only recently until like in in a lot of community members' lifetimes that kind of being gay or or yeah, queerness was illegal, right? 00:12:35.220 --> 00:12:42.740 So it's it's sort of no wonder that it is still quite common to not necessarily be out about a partner. 00:12:42.980 --> 00:12:56.740 But then, you know, the partner dies, you aren't legally recognized anywhere as a partner, you don't have access to, you know, the kind of the superannuation, for example, if there's no kind of history of you being there. 00:12:56.980 --> 00:13:06.100 Then there can be family of origin who perhaps the partner wasn't in contact with for years and years, who then do have more of a legal right to come around. 00:13:06.180 --> 00:13:19.779 And I think I think one of the things that I really try to emphasize in this work is that we are really fortunate to have the same legal rights in Australia, which was, you know, really hard fought for. 00:13:19.940 --> 00:13:26.420 But unless all of those I's are dotted and the T's are crossed, it it kind of slips through the cracks. 00:13:26.659 --> 00:13:44.899 So yeah, people who just haven't done the paperwork and then find themselves sort of shut out, perhaps the house that they've been living in, but hasn't necessarily sort of been all formally documented and things can yeah, kind of come up with really bad sort of consequences. 00:13:45.220 --> 00:13:59.620 I I'm also sort of thinking of the idea of funerals as well, which is quite a common issue that we see in our community as well, is when someone passes away, uh, is their funeral reflective of them? 00:13:59.779 --> 00:14:06.980 And, you know, we kind of, I think maybe a lot of us might have the attitude of, oh, well, you know, do what you want at my funeral. 00:14:07.060 --> 00:14:11.940 I know when I talk to my parents, they always say, Well, it's not for me, do whatever you want, I'll be dead. 00:14:12.019 --> 00:14:13.060 I don't really mind. 00:14:13.300 --> 00:14:22.500 But it can be really harmful for your loved ones and the ones left behind when they attend those funerals and the person they love is being misgendered, perhaps. 00:14:22.659 --> 00:14:38.659 They're a trans person, and then the the funeral comes along and their family of origin is directing, and you're you're watching this person you love be misgendered and represented in a way that you know isn't kind of true to them, or having people excluded from the funeral as well. 00:14:38.740 --> 00:14:54.019 It's it's a story that we've heard really frequently that all the community members will kind of attend, but their partner of 20 years is funeral, but if they weren't necessarily out, there's a real disenfranchised grief there as well, which comes across. 00:14:54.259 --> 00:15:03.940 So, yeah, though those stories are very in detail, but it it's pretty uh you do hear about it pretty commonly. 00:15:05.940 --> 00:15:12.980 So, how do you help people make sure that the I's are dotted and the T's are crossed when it comes to the paperwork? 00:15:13.940 --> 00:15:19.779 Yeah, it's so we have my my first reaction to say is it can be a bit tricky. 00:15:19.940 --> 00:15:36.740 Like I know even even me who's paid to to kind of do this work, I I see the the kind of information fact sheets about your superannuation or your will or your power of attorney, and you just think, holy duly, that is a lot to think about right now. 00:15:36.820 --> 00:15:42.980 And if I'm not kind of feeling like it's immediate, then it's a very easy thing to procrastinate. 00:15:43.139 --> 00:15:54.580 So um I always think it's important for me to give that disclaimer um because you know it it's been a few years of doing this job, and um my paperwork is also still not exactly where it should be. 00:15:54.820 --> 00:15:58.580 So but we do run online events. 00:15:58.659 --> 00:16:04.500 So my role is to put on events to promote the taking control toolkit that we have. 00:16:04.740 --> 00:16:16.420 So this toolkit is our online fact sheet that answers all the different things about what palliative care may look like, what you have rights for, paperwork to get onto, et cetera. 00:16:16.580 --> 00:16:22.980 And then we'll do a number of events throughout the year to promote this and to also specifically look at different topics. 00:16:23.139 --> 00:16:26.899 So I've been hosting online legal workshops. 00:16:27.139 --> 00:16:33.539 We've partnered with Seniors Rights Service and a legal firm that's well known to us called Dows and Turco. 00:16:33.940 --> 00:16:39.460 And they can help lead people through this crash course of what to do with legal rights. 00:16:39.539 --> 00:16:45.620 We've partnered with Advanced Care Planning Australia to host a similar online advanced care planning workshop. 00:17:29.400 --> 00:17:33.160 We also do these kind of in-person workshops. 00:17:33.319 --> 00:17:56.599 So I'll um host grief and bereavement workshops, um, but also when I think maybe slightly more um relevant to

the question, um I've hosted a number of death cafes across New South Wales, which kind of come with the aim to allow people to kind of gently chat about all things death and dying. 00:17:56.680 --> 00:18:03.160 And that can be a really good, effective time, gently lay those grounds and give people the resources and things like that. 00:18:03.400 --> 00:18:18.039 So we do try to make people aware of the kind of issues and and there is a very important piece for all Australians to do, you know, things like your advanced care directive, things like your wills and your power of attorney and everything. 00:18:18.200 --> 00:18:27.720 But being able to kind of make those community-specific information, you know, examples or case studies that make people go, oh, yeah, I'm in that story. 00:18:27.960 --> 00:18:33.319 I I can see where I could be burned if I don't get onto this now. 00:18:35.400 --> 00:18:57.480 And it's interesting when you say about the community stories, which I think is essential because most people, when you fill out an advanced care directive, you may be doing it with your local GP who may not be aware of what those subtleties are when it comes to what your wishes might be, because obviously it's it's looking at things from a medical perspective. 00:18:57.720 --> 00:19:09.080 So, what are some of the things that you you talk about with people about the importance of documenting that are outside maybe that that medical framework? 00:19:09.799 --> 00:19:29.320 And it is an interesting one that we've been having a lot of discussions with, because even when we've done the sort of advanced care planning workshop with uh the wonderful team in Queensland, a lot of people come back with like, well, it's it's uh it can be quite vague to document all of the kind of specificities and things, can't it? 00:19:29.400 --> 00:19:35.320 Like it's at once quite a heavy process in contemplating what can be involved. 00:19:35.480 --> 00:19:47.240 But similarly, I know when I've been looking at the advanced care directive worksheet, you kind of think, well, I might agree with this in some ways, but it's all very contextual and things like that. 00:19:47.480 --> 00:20:03.799 So we do kind of come with that look, we know it's not necessarily just going to be reflect on the documents, but really emphasizing the importance of the documents and the assistance that these wonderful organizations like Advanced Care Planning Australia have. 00:20:03.960 --> 00:20:10.840 They have their helpline where people can kind of chat through some of those things with, you know, trained volunteers. 00:20:11.160 --> 00:20:20.120 We also really emphasize the idea of why it's so important to talk to your family and friends about issues like this, right? 00:20:22.840 --> 00:20:29.880 I guess when we're encouraging people that it's not just about filling in the paperwork and then it's one and done. 00:20:30.039 --> 00:20:37.000 We really try to emphasize the point that all of these to more or less extent are living documents, right? 00:20:37.080 --> 00:20:43.400 They can be edited and changed and reflected to show where you are right now. 00:20:43.559 --> 00:20:56.039 And there's that piece which is so important, but there's also when we think about who we would appoint to make decisions for us when if we go to hospital and we don't have capacity, it's all well and good saying that. 00:20:56.200 --> 00:20:58.120 But have you had conversations with that person? 00:20:58.360 --> 00:21:02.600 Can you trust that they also know um what to do there? 00:21:02.759 --> 00:21:20.840 So we kind of really emphasize, and I think that's the beauty of having those death conversations and the death cafes that we host is uh showing people that talking about death and dying isn't this kind of like taboo scary thing that that we've kind of been led to believe it is. 00:21:21.000 --> 00:21:41.400 And so, you know, I always end those sessions by saying, okay, like you you've been trained up, you can now be the sort of person to go into your friendship group or your next social thing and then or even just that one person that you know is going to be making decisions for you and say, Hey, if this situation came up, this is what I would like or not like. 00:21:41.559 --> 00:21:57.480 So I think really emphasizing that documentation is important, but documentation isn't just the paperwork, it's also keeping people aware of your wishes and preferences as an act, not just for yourself, but for them as well in those crisis scenarios. 00:21:59.320 --> 00:22:00.440 That's very good advice. 00:22:00.680 --> 00:22:07.000 And tell me the taking control cool toolkit that you mentioned previously, that is available on your website? 00:22:08.200 --> 00:22:10.759 So it's on our ACON website. 00:22:10.920 --> 00:22:20.360 So when you go to the ACON website, we have the main screen, and then when it says what we're here for, you can go on to palliative care support. 00:22:20.680 --> 00:22:33.799 So that takes you through all things like the basic definitions, your kind of real basic what's involved and things, and then links other community groups or helplines organizations that can be good to link in with. 00:22:33.960 --> 00:22:36.279 Um, and they also go through some stories. 00:22:36.440 --> 00:22:42.759 So that was done in consultation with community members as well, quite an in-depth consultation. 00:22:42.840 --> 00:22:51.720 So there's some beautiful kind of tidbits and words from our older LGBTQ plus community members talking about their experience accessing it and things like that. 00:22:51.960 --> 00:23:00.360 So, yes, it is on the website, and we really encourage people to check that out, but to also check out the different people that we've linked in with. 00:23:00.440 --> 00:23:07.960 You know, Palliative Care New South Wales does fantastic work, as does Palliative Care across Australia, advanced care planning, places like that. 00:23:09.480

--> 00:23:12.440 Tell me a little bit about the Love Project itself. 00:23:13.559 --> 00:23:19.559 Yeah, the Love Project is fantastic, and yeah, Rasculus has been running it fantastically. 00:23:19.640 --> 00:23:22.920 It's been going, I want to say 12 years now. 00:23:23.160 --> 00:23:27.960 So the I guess it's kind of useful to give Acon's history as well. 00:23:28.120 --> 00:23:34.759 Acon began 40 years ago during as a direct community response to the HIV AIDS crisis. 00:23:35.000 --> 00:23:37.640 And then the Love project came about. 00:23:37.720 --> 00:23:45.320 You know, it started specifically looking at that HIV response, but we've since expanded to a number of different kinds of works as well. 00:23:45.400 --> 00:23:48.200 And we try to engage the huge breadth of. 00:23:48.600 --> 00:23:50.519 Of health care necessary for our community as well. 00:23:50.680 --> 00:24:05.480 The Love Project then kind of was a specific response to, you know, answering that our community members are getting older, being able to kind of directly talk about well, what are some of those specific issues and also address some of that social isolation. 00:24:05.799 --> 00:24:17.240 I think it's a an extremely common story, especially with our older community members, where you maybe haven't been necessarily super in contact with community. 00:24:17.400 --> 00:24:20.440 There can be people, especially living regionally or rurally. 00:24:20.680 --> 00:24:24.279 You may have a partner that is your sort of community contact. 00:24:24.360 --> 00:24:32.600 And then if your partner passes away, there can be real intense isolation, both from losing your partner, of course, but also from that. 00:24:33.480 --> 00:24:38.279 Do I share my grief if it then means coming out when I may not be comfortable? 00:24:38.519 --> 00:24:39.160 Things like that. 00:24:39.320 --> 00:24:59.720 So our love project aims to do a huge array of work from health promotion around healthy aging information, what that looks like for people living with HIV, what it looks like for older women, what it looks like for older trans people, and also kind of yeah, just link in that sort of social connection as well. 00:24:59.880 --> 00:25:10.039 So some wonderful events that have been happening across New South Wales is our Afternoon Delight event, which is a free movie screening with a bunch of short films. 00:25:10.200 --> 00:25:11.000 And that's been great. 00:25:11.080 --> 00:25:16.120 It brings together hundreds of community members in those specific areas that we run it in. 00:25:16.279 --> 00:25:21.400 It's a really nice opportunity to be able to say, hey, we're Akon, you may not have engaged with us in the past. 00:25:21.480 --> 00:25:23.320 And, you know, this is what we can do. 00:25:23.480 --> 00:25:26.279 So the Love Project is doing amazing work. 00:25:26.440 --> 00:25:31.240 They've recently been involved with Dementor Australia as well to make resources like that. 00:25:31.400 --> 00:25:43.960 So it really is the first place we hope, anyway, for our older LGBTQ plus community members to get healthy inf aging information as well as that kind of social connection as well. 00:25:45.640 --> 00:25:58.680 We mentioned in the intro about the fears around aged care when it comes to the community and whether there's a possibility of actually being forced back into the closet in that sense. 00:25:59.000 --> 00:26:02.600 Can you talk us through a little bit about those concerns that you've heard? 00:26:03.000 --> 00:26:03.880 Yeah, absolutely. 00:26:04.039 --> 00:26:07.320 And again, it's, you know, the most common thing we hear. 00:26:07.559 --> 00:26:17.880 We in my kind of team, I also am with the ACVIS team, which stands for the Aged Care Volunteer Visitor Scheme, and our community service network as well. 00:26:18.039 --> 00:26:23.400 And that's where volunteers go out and visit isolated older LGBTQ people. 00:26:23.640 --> 00:26:26.759 And yeah, it's just a really common story. 00:26:27.000 --> 00:26:39.640 Though that team, the ACVIS team, will frequently get in contact with aged care homes across New South Wales and say, you know, do you have someone in the community who would like a volunteer from community? 00:26:39.720 --> 00:26:40.840 It's a great initiative. 00:26:41.080 --> 00:26:45.160 And, you know, we we hear the same thing again, which is that sounds like a great initiative. 00:26:45.400 --> 00:26:49.640 We don't have anyone at our residential aged care that is part of the community. 00:26:49.960 --> 00:26:54.120 And we all think, as queer people, we go, well, we know that's not true. 00:26:54.279 --> 00:26:56.759 I mean, we make up 10% of the population. 00:26:57.000 --> 00:27:02.840 And of course, there are people there, but you you go in and you don't feel safe to come out. 00:27:02.920 --> 00:27:04.759 And that can be for a variety of reasons. 00:27:04.920 --> 00:27:09.799 It can be from maybe not necessarily trusting that you'll get the best care from staff. 00:27:09.960 --> 00:27:14.360 There is an extremely high turnover of staff in aged care homes as well. 00:27:14.440 --> 00:27:18.519 And this is something that we've talked about with the wonderful staff members there as well. 00:27:18.840 --> 00:27:26.279 But there can sometimes be difficulty in getting that kind of training or getting that training really embedded in different aged care homes. 00:27:26.440 --> 00:27:35.480 And it can also be, you know, that fear of my, especially again for our trans community, do they know how to necessarily take care of my body? 00:27:35.640 --> 00:27:40.440 Will I be experiencing more discrimination if I am out to people? 00:27:40.600 --> 00:27:46.759 But then there's also the fear of, you know, coming out to your kind of fellow residents as well. 00:27:47.000 --> 00:27:57.160 I think we kind of all know from listening to the brave Australians who come out and talk about conditions in aged care home, we know that it can

already be a really isolating place. 00:27:57.400 --> 00:28:10.759 And so you kind of have no guarantee that the people that you're going to be surrounded by, perhaps they've grown up and think that they've never met a queer person and maybe have some of those harmful stereotypes that haven't been challenged yet, you know? 00:28:10.920 --> 00:28:22.279 And so there's it's really common that you kind of think, well, I'm already feeling terrified to enter residential aged care for all of the reasons we kind of know exist. 00:28:22.600 --> 00:28:29.799 I don't want to be the outcast, and I don't want to be the person who's going to experience even more troubles when I'm in there. 00:28:29.960 --> 00:28:39.799 It's really common, and we hear community members just say flat out, you know, I won't be entering into care as well, which we know sometimes we can't help. 00:28:39.960 --> 00:28:42.600 So it is something that we're really trying to work on. 00:28:42.759 --> 00:28:45.240 I think it's a really interesting direction. 00:28:45.320 --> 00:29:01.480 And I know that ACON is really dedicated, not just our love project team, but we really know that that's kind of a growing percentage as well, especially when we think, you know, our kind of initial advocates like the 78ers are kind of in that age group to be entering into aged care. 00:29:01.640 --> 00:29:06.680 I think we all think our rights are on the shoulders of those really amazing activists. 00:29:06.920 --> 00:29:13.240 We need to do our bit as well and really recognize that there can be a lot of danger in coming out in aged care. 00:29:13.320 --> 00:29:14.840 And so how can we help that? 00:29:16.519 --> 00:29:18.120 And how can we, Zoe? 00:29:19.320 --> 00:29:43.320 I think a lot of it is about the general kind of education, and I think I'm trying to to work out how to say this in the like palatable sort of activism sense, but I think it wouldn't surprise a lot of us, I think, when I say that we're living in a pretty scary time in the world. 00:29:43.400 --> 00:29:50.920 I think a lot of us are feeling it, but I know that a lot of our LGBTQ plus community are feeling it as well. 00:29:51.160 --> 00:29:59.000 Trans people have been used as a political scapegoat for people in a way that is incredibly dangerous and and harmful for them. 00:29:59.240 --> 00:30:06.279 I think a lot of our community members know that there's something quite frightening in the air at points. 00:30:06.360 --> 00:30:16.920 Um, and you know, even um things that we've sort of maybe taken for granted for a while as sort of feeling frightening, I guess. 00:30:17.080 --> 00:30:22.360 Um so I think it is a kind of lesson in the broader. 00:30:22.759 --> 00:30:43.480 We really need community solidarity across Australia to really understand that these, you know, these kind of political messages that have been coming out are not acceptable and that our LGBTQ plus community is, you know, part of our wonderful community. 00:30:43.559 --> 00:30:49.160 They're our they're our, you know, siblings, they're our our children, they're our friends, they're our colleagues. 00:30:49.400 --> 00:31:05.160 So I I think one point of that is really recognizing the unified solidarity that we all have as Australians to kind of stand up when something's wrong and to be able to sort of challenge those opinions and things if and when we hear them. 00:31:05.320 --> 00:31:18.519 And then that's sort of the hope that that osmosis sort of happens to all aspects of our lives, not just residential aged care, but you know, to to the hospitals that we're accessing, to even grocery shopping. 00:31:18.680 --> 00:31:33.160 So I I think that's kind of one key point is is really listening and really resisting some of the messages of hate that we're being fed globally, as well as in Australia, about our LGBTQ plus community. 00:31:33.400 --> 00:31:50.120 But I also think, yeah, there's there's something about kind of questioning, you know, even as an ally, if you are, you know, maybe have parents going into residential aged care and you're already having those discussions, asking the question, you know, you'd probably ask, what's the the way you handle complaints and what's this and what's that? 00:31:50.360 --> 00:31:56.519 Just dropping the question in there of, and do you have a LGBTQ plus um safety policy specifically? 00:31:56.680 --> 00:32:01.320 Or, you know, is there training that staff do, yeah, specifically to support these communities? 00:32:01.480 --> 00:32:02.840 I think is a really big one. 00:32:03.000 --> 00:32:12.680 I think there's something about the shared recognizing that it's a scary moment for a lot of us in the world, you know, as as just human beings. 00:32:12.840 --> 00:32:21.480 And so resisting those messages of scapegoating or or just yeah, messages that that try to drive us apart from our shared connection. 00:32:22.680 --> 00:32:34.200 I love the fact that you you talk about asking that question about what their policies are and what their safeguards around the community within the workplace and within the aged care organization. 00:32:34.360 --> 00:32:45.480 I think that that is a really good place where we can all help being a good ally by asking those questions and raising the importance of those organizations having those policies and that staff training in place. 00:32:45.720 --> 00:32:49.160 We haven't really touched about palliative care so much. 00:32:49.400 --> 00:32:52.519 So we've talked about advanced care planning. 00:32:52.759 --> 00:33:00.039 Where have you seen perhaps some misconceptions around palliative care within the community with the conversations you've been having? 00:33:00.759 --> 00:33:11.320 I think it's a pretty shared misconception amidst the kind of broader Australian population about what is palliative care. 00:33:11.400 --> 00:33:26.039 And I think there's still that sort of misconception that palliative care is something that you

are linked in with when you have a month left to live after having a very long and drawn-out kind of illness. 00:33:26.360 --> 00:33:30.600 And yes, that that is also when you should be accessing palliative care. 00:33:30.680 --> 00:33:45.480 But I think a lot of people are surprised to hear that you're allowed to access palliative care and get a support team and access that for years, you know, or you're allowed to access it and then get better and then not access it anymore. 00:33:45.559 --> 00:33:55.240 Like it's not necessarily, you know, the the medical team giving up on you or saying that you're, you know, moments away from dying. 00:33:55.480 --> 00:33:58.680 So we kind of do try to change that. 00:33:58.920 --> 00:34:03.559 And you hear that there's also kind of a problem with that early referral. 00:34:03.640 --> 00:34:08.840 And so I think that that education for wonderful medical teams as well is really important. 00:34:09.000 --> 00:34:17.239 But I kind of tried to say, you know, your relationship with your doctor, even, you know, just GP, is a shared relationship. 00:34:17.400 --> 00:34:29.480 Like you can bring up and say, hey, is this something that I'd love to get, you know, a physiotherapist involved, or I'm I'm would like to experience a bit more comfort in my day-to-day life? 00:34:29.639 --> 00:34:33.079 Is this something that I can get LinkedIn with the palliative care team about? 00:34:33.239 --> 00:34:43.400 So yeah, something that we try to say to change that kind of misconception that I think a lot of us do have is sort of saying, well, have a conversation about it, you know. 00:34:43.559 --> 00:34:50.279 Maybe your doctor says, oh, to be honest, no, the palliative care team, you know, is not needed at this time. 00:34:50.360 --> 00:34:51.799 You just need some antibiotics. 00:34:51.880 --> 00:34:53.159 And that's also great, you know. 00:34:53.400 --> 00:34:57.400 But being able to kind of raise it and have that discussion, I think is really important. 00:34:57.480 --> 00:35:14.279 And sort of, I think something that I'm struck by in all of the attendances at conferences or talking to community organizations and even clinicians as well that I've chatted to is what a fantastic space, so much palliative care is. 00:35:14.440 --> 00:35:26.920 I think that it's surrounded by awesome, awesome people who have this, you know, a really unique view of the world who understand the importance of allied health and and things like that. 00:35:27.079 --> 00:35:50.920 And so I kind of think that we're, and you know, I kind of don't know if I should give the disclaimer of like, I know that not everyone experiences that in palliative care, but also trying to say to people, like, loads of palliative care clinicians I talk to understand the importance of social workers and would be more than happy with, you know, clients linking in with a social worker to kind of say, hey, this is part of my gender expression. 00:35:51.000 --> 00:35:53.400

I I want this to be a chief part of my care. 00:35:53.559 --> 00:35:58.920 And so also trying to get that message of like a lot of people want to do the right thing, right? 00:35:59.000 --> 00:36:05.639 And a lot of people want to make your care, if you're in hospital or at home or whatever, really great. 00:36:05.800 --> 00:36:08.119 But sometimes they may not have the knowledge of how to do that. 00:36:08.280 --> 00:36:11.800 So yeah, having that conversation with people that you trust. 00:36:11.960 --> 00:36:21.559 And I think that also brings up the importance of for hospitals or or medical practices as well, those small visual signifiers that you are a safe person to talk to. 00:36:21.720 --> 00:36:37.000 Like I always encourage, you know, a a little rainbow pin or whatever on your lanyard like does go a long way for queer people to kind of say, okay, if I if I I feel like this person has a basic understanding of, you know, accepting me. 00:36:37.159 --> 00:36:39.880 So yeah, that that's sort of a mixed response. 00:36:40.039 --> 00:36:48.920 But the yeah, the misconception that we can't access palliative care until everyone's sort of washed our hands of us is not at all true. 00:36:49.480 --> 00:36:56.599 So it really highlights the importance of those documents in making sure that we have those in place. 00:36:56.760 --> 00:37:02.039 So when we can't speak for ourselves, we've appointed someone who can speak on our behalf. 00:37:02.280 --> 00:37:06.200 And you've talked about advanced care directives, wills. 00:37:06.840 --> 00:37:22.519 So when we look at the role of when someone dies and we're wanting to honour them in their funeral, obviously that sits with the executor who's outlined in the will. 00:37:23.000 --> 00:37:39.720 But where have you seen people being able to use ritual to celebrate that person that they know personally that may not be the one that's reflected in the official funeral put on by the biological family? 00:37:40.360 --> 00:37:55.240 And it is something that we kind of talk about as well is you can have a funeral service for someone that you love who, you know, you you don't need to legally register or whatever that you are going to create a ritual. 00:37:55.320 --> 00:38:00.440 And it's something that I think the rainbow community is really great at. 00:38:00.599 --> 00:38:07.159 I think that we are no strangers to having a party to, you know, commemorate people with. 00:38:07.320 --> 00:38:11.559 And I I think, you know, and I I even kind of get a bit emotional thinking about it. 00:38:11.639 --> 00:38:23.720 But, you know, you you think about the the all of the people who died through the AIDS crisis and the blankets that were sort of made by community members as commemoration. 00:38:23.800 --> 00:38:40.440 Um, so for um, yeah, those who may not know when someone would pass away um during that terrible time, um, it was community members who'd come together and stitch like a blanket with their name and these beautiful artworks that you can look up. 00:38:40.519 --> 00:38:43.720 So I think something like that is a perfect example. 00:38:43.880 --> 00:38:59.480 Those were loved ones and friends who died so tragically, who sometimes weren't talked about in their entirety in their funerals, and who were horrifically neglected in many ways by policy, and there was that real disenfranchised grief. 00:38:59.639 --> 00:39:09.880 And what happened was loved ones came together and that idea of a shared kind of you'd stitch together, you'd be making art together while you cried, while you listened to some music. 00:39:10.280 --> 00:39:13.400 I think things like that are really, really important. 00:39:13.559 --> 00:39:17.559 And I think it comes back to, like you said, um, that idea of ritual. 00:39:17.720 --> 00:39:25.079 I think a lot of us um need, I think ritual is a really, really important way in moving through grief. 00:39:25.320 --> 00:39:34.679 And I think that we have the idea that ritual can only be one way, and especially when we're in those moments of like someone's died. 00:39:35.000 --> 00:39:38.360 I just feel so paralyzed and I don't know what to do with it. 00:39:38.519 --> 00:39:43.400 You can think, oh, the funeral is the ritual, and that's just because that's the thing that we always do. 00:39:43.559 --> 00:39:50.519 And I think I'd really encourage people to think get some friends together, have a dance, light a candle, think of that person. 00:39:50.840 --> 00:40:09.960 You can write something beautiful and burn it, you can do anything that you feel can create that kind of connection with the person who's died because that that relationship still lives on and you have any ability to yeah, move through that grief in a way that you feel represents them as well. 00:40:10.200 --> 00:40:20.440 I would encourage people who perhaps go to a funeral and and feel a bit funny walking out with, you know, some things that were said or not feeling as involved or whatever. 00:40:20.519 --> 00:40:27.159 And it's a really beautiful and important part of grief, I think, to be able to do that yourself. 00:40:29.400 --> 00:40:42.599 And just expanding on grief, and you've talked about disenfranchised grief uh and also anticipatory grief that that comes with a lot of the the after you've been diagnosed with a life-limiting illness. 00:40:43.800 --> 00:40:49.159 How can we support ourselves in that? 00:40:51.240 --> 00:41:11.240 It's it's a very I often find that when we talk about supporting ourselves in grief, and you know, sometimes you look up the sort of the health information or whatever, and it's the go for a walk, make sure you're eating enough, make sure you're, you know, staying socially connected and things. 00:41:11.320 --> 00:41:27.240 And I think for any of us who've experienced grief, we probably think, yeah, well, when I I was in that intense grieving process, I maybe read that and went, I don't have capacity to be acting like a perfect human

at this point. 00:41:27.480 --> 00:41:39.400 So I think that one big part of grief is recognizing that it just so dramatically alters you in and you are a new person from it, right? 00:41:39.639 --> 00:41:47.880 You are a new person having to navigate this world without this physical relationship that you had with someone. 00:41:48.119 --> 00:41:49.480 And that's big. 00:41:49.720 --> 00:42:06.599 So on one part of navigating grief, I think it is important to say go for walks and recognize that even if you're not feeling hungry, it is important to keep your strength up because it's a big process that you're doing and to keep connected to community and things like that. 00:42:06.760 --> 00:42:12.679 But I also want to kind of give the the off-scripted answer of that does look different from everyone. 00:42:12.760 --> 00:42:28.599 And again, thinking of the queer community specifically, we are big ones for letting it out on the dance floor and the you know pamphlets that you'll sometimes see saying, don't drink or use drugs or whatever, and uh in this time. 00:42:28.760 --> 00:42:35.800 And yes, that can be a thing that can make our grief feel more intense and perhaps in a way that doesn't serve us. 00:42:35.960 --> 00:42:55.159 But I think recognizing like, do what you need to do to move through that grief, whether that's partying and dancing through the grief, whether that's creating your own ritual, whether that's just saying, I, you know, I can't quite deal with this in the way that the brief pamphlet says. 00:42:55.400 --> 00:43:01.000 But I also really think remembering to bring people into that as well when you can. 00:43:01.079 --> 00:43:08.760 I think loads of people want to be there and to support and help you when you're grieving. 00:43:08.920 --> 00:43:16.920 And I think we probably all know the feeling of seeing someone in grief and kind of going, oh, is there anything I can do to help? 00:43:17.079 --> 00:43:25.400 And I think also like remembering that there are usually so many people who would want to hold space for that. 00:43:25.480 --> 00:43:46.039 And I think it also calls on us as people when we're not in grief to remember if you know someone who's going through that, you know, hold that space, don't expect things to be perfect, don't expect them to be packaging up their answer in a neat way or getting over it in five stages, which we all know is not accurate now. 00:43:46.440 --> 00:43:48.280 Which I think represents grief, right? 00:43:48.360 --> 00:43:53.960 How can we just say in a succinct three-minute soundlight how to, you know, go through it? 00:43:54.039 --> 00:43:58.519 It's messy and it sucks, you know, and it's okay that that's the case. 00:43:58.760 --> 00:44:04.599 No one's expecting you to be, no one should be expecting you to be your normal put-together self. 00:44:04.679 --> 00:44:07.240 You are a person changed completely anew. 00:44:07.960 --> 00:44:12.840 I think that's so true that you are a person changed once you've actually had someone close to you die. 00:44:13.159 --> 00:44:16.760 I can't thank you enough for spending time with us today, Zoe. 00:44:17.159 --> 00:44:18.920 I've really appreciated our chat. 00:44:19.159 --> 00:44:20.119 Thank you so much. 00:44:20.519 --> 00:44:21.960 Awesome, thank you so much. 00:44:22.200 --> 00:44:25.480 We hope today's conversation gave you something to think about. 00:44:25.720 --> 00:44:33.800 If it brought something to mind that you haven't organised yet, talked about, or decided on, don't try to do everything at once. 00:44:34.039 --> 00:44:36.760 Start with one simple step. 00:44:37.159 --> 00:44:47.000 We've created a free three-minute critical info check to help you see what you've already got covered and what your next step could be. 00:44:48.920 --> 00:44:57.639 And if this episode has brought up feelings for you of grief, loss, or bereavement, please note that you don't have to navigate that alone. 00:44:57.960 --> 00:45:07.079 We have an after death guide to support you, and you can find grief and bereavement support organizations through the Critical Info Resource Hub. 00:45:07.559 --> 00:45:14.760 The links are in the show notes, and remember, you may not be ready to die, but at least you can be prepared. 00:45:17.400 --> 00:45:19.880 What if something happened tomorrow? 00:45:20.200 --> 00:45:27.720 A sudden hospital stay, an accident on an overseas trip, or something happening to someone you love. 00:45:28.280 --> 00:45:31.320 Do you know where the important documents are kept? 00:45:31.639 --> 00:45:34.760 Can someone speak for you when you can't? 00:45:35.159 --> 00:45:37.800 Do you know your loved one's wishes? 00:45:38.119 --> 00:45:41.400 You don't need to organize everything today. 00:45:41.720 --> 00:45:45.800 Take our free three-minute critical info check. 00:45:46.039 --> 00:45:51.000 It helps you see what you've already got covered and what your next step could be. 00:45:51.320 --> 00:45:53.960 Three minutes, one next step. 00:45:54.200 --> 00:45:55.960 The link is in the show notes. 00:45:56.200 --> 00:46:00.920 Critical info is your backup plan for life's unexpected moments. 00:46:01.400 --> 00:46:07.000 If someone came to mind while you were listening to this episode, why don't you send it to them? 00:46:07.240 --> 00:46:14.280 Sometimes the easiest way to start a difficult conversation is to actually start with someone else's story.