Reimagining Death Care with Isabel Knight

Isabel Knight, also known as The Death Designer, operates a unique business focused on end-of-life planning. She employs principles of human-centered design to assist individuals in navigating the complexities of death care. This approach involves co-creating systems and products with users to ensure they meet their needs effectively. 

Isabel emphasizes the importance of making death care more human-centered, aiming to alleviate the stress and confusion often associated with the process. She guides people in obtaining death certificates, understanding funeral options, and initiating difficult conversations about end-of-life preferences.

Isabel acknowledges that her clientele extends beyond those planning for themselves to include caregivers and family members of terminally ill individuals. She observes a cultural reluctance to engage in discussions about death, which she attributes to societal attitudes toward self-worth and aging. Isabel challenges these perceptions, advocating for the celebration of individuals' lives and the recognition of caregiving as a reciprocal act.

In addition to her consultations, Isabel advocates for more sustainable and inclusive practices within the death care industry. She discusses alternative methods of disposition, such as water cremation and natural organic reduction, which offer environmentally friendly alternatives to traditional burial and cremation. Isabel also addresses the need for greater inclusivity in death care, particularly for marginalized communities like the polyamorous and non-monogamous.

Through workshops and collaborative initiatives, Isabel facilitates discussions among diverse groups to identify gaps and biases in existing death care systems. By centering the experiences of vulnerable populations, she aims to create resources that benefit everyone. Isabel emphasizes the collective wisdom of communities in shaping more equitable and compassionate approaches to death care.

https://www.open-love.org/end-of-life-planning

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Transcript

[00:00:00] Isabel: It is truly a gift to allow people to celebrate you for those people who are like, I don't want a big funeral. I don't want to elaborate anything that actually also helps other people with their grieving process. 

[00:00:12] Jill: Welcome back to Seeing Death Clearly. I'm your host, Jill McClennen, a death doula and end-of-life coach here on my show.

[00:00:19] I have conversations with guests. that explore the topics of death, dying, grief, and life itself. My goal is to create a space where you can challenge the ideas you might already have about these subjects. I want to encourage you to open your mind and consider perspectives beyond what you may currently believe to be true.

[00:00:37] In this episode, I talk with Isabel Knight, also known as The Death Designer. Isabel shares her expertise in human-centered design. and how she applies it to the death care industry. We talk about her work advocating for more inclusive end of life practices, sustainable alternatives to traditional burial and cremation, and an end of life resource she helped create for non monogamous and polyamorous.

[00:01:03] people. We discuss how the traditional death care system often overlooks the needs of these communities and how she's helping to bridge that gap. With both of us being non-monogamous individuals, we bring personal perspectives to the conversation, emphasizing the importance of inclusive design and addressing diverse needs within the community.

[00:01:23] Thank you for joining us for this conversation. Welcome to the podcast, Isabel. I'm really excited to have you on because we did meet in person once. Actually, I think we met twice. You came to the death over drafts, but I didn't really get a chance to talk to you. And then we met at a symposium that we were both part of and we had a little bit more of a chance to talk.

[00:01:43] But now this is exciting because now we actually get to just like chat with each other for a little bit. So thank you so much for coming on. Yes, 

[00:01:50] Isabel: of course. Happy to be here. Thank you for having me on. 

[00:01:53] Jill: Awesome. And so you are a death doula, correct? Like that is the title that you go by? 

[00:01:59] Isabel: Yeah, I think a lot of people, I also use the term end of life guide, just because I think that people who are kind of in my target demographic often just like don't know what a doula is.

[00:02:10] I just try to save myself the time of having to explain like, oh, have you heard of a birth doula? Like, you know, it's kind of like a birth doula, but you're advocating for someone who's dying. Like, you know what I mean? Yeah. 

[00:02:18] Jill: Oh, I know what you mean. It is an interesting conversation to have with people that first off, usually don't want to talk about death.

[00:02:25] Yeah. And so you're kind of already starting with a topic that they don't want to talk about and then to confuse them even more by adding in other things. What is your like target demographic? Like who do you really like to work with? 

[00:02:37] Isabel: Well, so, my business is, I'm a designer, at heart. So, one of the things, so my business is called The Death Designer, and so I kind of have two sides of my business.

[00:02:49] I work with both individuals who are doing end of life planning, and I help them build kind of a map for themselves, in a very similar way to the way I would make a journey map for like, Uh, client that's a business and so for those of you who might not be familiar with human centered design, basically the whole crux of it is that you're trying to design systems and products that you're co creating with your users and with your customer base.

[00:03:17] So basically if you've been into like a hospital, in the ER, I feel like People often have this visceral sense of like, wow, like this is a very stressful place to be like, and so that's like kind of the go to example that I use to be like, okay, well, what if you were designing the ER? Right? Like, what would the lighting be like?

[00:03:35] What would the sounds be like? How would you process people? And so I think a lot of times In death care, I always say that death care is expensive, traumatic, and complicated. And so, anything that we can do to try to work with funeral homes, or the medical examiners, or whoever, to make those systems a lot more Quote unquote human centered.

[00:03:57] That's a lot of what I'm trying to do. And so, as someone who has learned a lot with these systems, for people who have gone through a death for the first time, it can be so intimidating. And a lot of what I do with individuals is just help them navigate that process because it's complicated and people don't understand.

[00:04:15] How do I get a death certificate? What do I do with it? Where do I go for information, basically? So that's a lot of what I'm doing with people, is. working with businesses to make their products more human centered and then working with individuals to, and often those individuals, to get back to your target demographic question, in my ideal world I'd be working with people who are planning for themselves, but I think also, you've probably experienced this too, a lot of the people who come to me are the children or caretakers for someone who's dying and I think it's something that If they're having difficulty having the conversation, they might have reached out to someone like me to try to help navigate that conversation, initiate the conversation and be like, Hey, I got you this package for Christmas or for Hanukkah or something, because this is a gift for you.

[00:05:02] But then for the person who's like the child of the gift for themselves, too, it's like, they're merely a gift for them. 

[00:05:07] Jill: That's one of the things that I try to really get people to understand is coming up with a plan. However, you do it for what you want at the end of life is really a gift to give to your family because you talk to people so often they'll be like, I don't care what happens.

[00:05:22] It doesn't matter what happens. Yeah, that's not really true, though. It that puts a lot of pressure on your family members. 

[00:05:29] Isabel: They've gone through it themselves. As you go through it once for your own parents or something, you're like, wow, this is. This is intense, like I don't know what's going on, 

[00:05:38] Jill: right? It is, it's intense, it's stressful, it ends up being very traumatic for a lot of people and it doesn't have to be, but it ends up being that way because we're too afraid to talk about it and plan for it ahead of time, like we should, and yeah, that's, that's a big problem.

[00:05:54] Big project, I think, just getting our culture to be more comfortable having these conversations and to plan a little bit better. Right. But we kind of don't. And it's, it is, it's a shame. 

[00:06:05] Isabel: And it's not just like the death taboo, I think it also ties in a lot with our conception of, like, I also hear a lot of this.

[00:06:14] It's very self deprecating, kind of like, throw me in the dumpster, I don't want you to make a big deal out of my life. And I think it's really tied up into this conception of how we value ourselves as individuals, and I think that's especially something that becomes really relevant once you're sort of retired, and you stop being, quote unquote, like, an economic contributor, or you're not, like, in the workforce anymore.

[00:06:36] And I think once you're in that position, a lot of people start feeling very, like, A burden or like they're worthless or whatever. It's very difficult for us as, I'll say Americans, but I think that's probably true globally to receive care, right? We find that to be very difficult because it feels like this very one sided thing and I think you often feel very powerless as someone who's in the position of receiving care and So I think that that's also something that's really difficult for us to grapple with.

[00:07:07] It is truly a gift to allow people to celebrate you. Like for those people who are like, I don't want a big funeral. I don't want to elaborate anything. It's like, okay, but that actually also helps other people with their grieving process. It's not necessarily this narcissistic thing that's just about you.

[00:07:23] You know? 

[00:07:24] Jill: That's a great point because I think a lot of people do have that idea of, I don't want to be a burden. I don't want to Cost my family too much money. I don't want all of these things. But really, it's not about you at that point. It really is something that helps your family. It helps them through the process of you aging or going through terminal illness and dying.

[00:07:45] And then their grieving process that if we can make the whole thing smoother for everybody, it actually really does help them. Yeah. And it's interesting because I hadn't really thought about it that way because I'm somebody that So much of my identity, it's getting better now, because I'm working on it, but so much of my identity was tied up in my career, and how much I worked, and how hard I worked, and I came from food service, so it was like a badge of, like, pride that we would wear, of, I worked for 14 hours non stop, I didn't even eat the whole time.

[00:08:18] Like, that was always our culture, and so I can already see myself. That when I retire, I don't know if I'll ever retire, so this idea of like, once we're retired, we don't have that benefit to society anymore, and so we don't want people to go out of their way for us. Yeah. Hopefully that'll change, though, a little bit.

[00:08:39] You also do home funerals as well, right? You're the president, still? Is 

[00:08:44] Isabel: that what you were? Correct. Yeah, I'm the president of the National Home Funeral Alliance. Also, just as a side note, one thing I love about the death care space is that people come from every background under the sun. You know, like coming from like food service or engineers, artists.

[00:08:58] I feel like no one ever sort of starts out in deaf care and so everyone is coming from such a different, very cool perspective. I'm coming from design. 

[00:09:06] Jill: And that's it. We all have our backgrounds that we bring with us. I'm very service oriented and so that's why like sometimes I'll say to people I'm like the Ritz Carlton of end of life care.

[00:09:18] It's not going to be for everybody because I have to do private pay. I can't take insurance. I can't take Medicaid or anything like that. But I promise that you'll get the best care possible because I am so service oriented. I, that's just my background. 

[00:09:33] Isabel: Totally. Yeah, for sure. To just go back to what the National Home Funeral Alliance.

[00:09:38] So as an organization, we educate people about community death care and doing a funeral with or without the help of a funeral director, but not necessarily in a funeral home. If you have a home, it could be in your home. It could be in another space because one of the things we're trying to work on is being more inclusive people who might not have homes, for example.

[00:09:59] And we've really been going through this incredible evolution over the past few years since I've been part of the organization. We just last year in May, we released it. The the newest iteration of our Home Funeral resource, the Home Funeral Guidebook. And it's a free resource. It's pay what you want donation based.

[00:10:18] And we worked so hard on that resource to try to make it as inclusive as possible. It really came out of an effort that I started even before I joined the organization back in 2020, like a lot of different organizations. After George Floyd, I think we're examining their equity and access. And so we had an equity and access committee and we're really committed to co creating the Home Funeral Guide with our members and having it be truly this community built resource.

[00:10:46] We had illustrators from the community, we had people contribute photographs, and like so many people worked on drafting it. So it was truly this very huge endeavor, but now anybody who wants to to be able to learn how to do things like take care of a body at home, which involves things like washing or shrouding.

[00:11:05] And it goes into these really nitty gritty details of, okay, what do you do with the eyes? It teaches you how to do like a dental tie to keep the mouth shut after someone has died and things like that. So it goes kind of into those technical details for people who want to be able to figure out how to do some of these things at home because our whole premise of our organization is that this is, death care is something that's legal for anyone to do at home in all 50 states.

[00:11:27] And It is for everyone. Anybody can do this. A lot of people will be doing it for the first time, and that's totally fine. Obviously, it's not for everyone. Not everyone wants to care for someone's dead body, but for some people, that's a really, really intensely beautiful and healing experience for them.

[00:11:45] And it's also a much more affordable thing. One other thing that I do is I volunteer for the Funeral Consumers Alliance of Pennsylvania, and so I'm really involved in this advocacy around trying to make funerals more affordable. The average funeral, according to the most recent National Funeral Directors Association study, is about 7, 800, and in a lot of places it's more like 13, 000, 15, 000.

[00:12:07] That's not something, especially if you're having unexpected death, that people just have sitting in the bank. Right? So that's one thing. Another reason why people might turn to home funerals is that you still have to pay for a disposition method, the cost of burial, or the cost of cremation, but it definitely lowers some of those costs in terms of needing to work with a 

[00:12:28] Jill: funeral home.

[00:12:28] Yeah, and most people don't realize that that's even an option. Absolutely. Because all we've seen is, I grew up Catholic, so it's like you would go to the Catholic church and the body would be there, and then we would move them. There was a lot of transporting and moving around, and then to the cemetery.

[00:12:43] The cost of those things. It is very expensive and you hate to be like, I don't want to say that all funeral directors are this way because of course that's not the case, but there's definitely some that it really is just a business and so the most expensive of everything is going to be what is recommended to people.

[00:13:03] Even though that's not always what they necessarily need or want, but they're in a vulnerable position because their loved one just died and so if they're getting sold a casket that's 5, 000 when really they could just buy one for 1, 000, but they're too emotional to ask about it. They end up buying the 5, 000 casket that they can't afford and don't even want.

[00:13:26] Isabel: And we have so many funeral directors that I know and love that are really trying to make the space a lot more progressive. The mortuary schools are increasingly People who are much more interested in race transparency and helping people to, like, allow them to be with their own dead and things like that.

[00:13:46] And so I think that the industry is getting better in that regard, but it is something where we haven't created a culture of shopping around. Like, if you just ask the average person on the street, back in September of 2023, I was One of the panelists at this workshop that was hosted by the Federal Trade Commission, which is the regulator of the funeral industry, because right now they are basically looking at revising and updating the funeral rule, which is the Bain legislation that governs the funeral industry.

[00:14:17] And one of the things that they are considering is, like, figuring out whether or not funeral homes should pose their prices online, because that would be a huge step towards helping people to shop around. Like, we just don't have a culture of people shopping around for funerals right now, and that is wild because, as I mentioned in that workshop, your funeral is the third most expensive thing that the average consumer buys after A house and a car and people I think generally have more of a sense of what houses and cars cost, right?

[00:14:47] You can just go on Zillow and like look up house costs like in your area like wherever, right? You can figure out how much a car costs. If you can't even go online to a funeral homes website and get their price list, how would anybody know what a funeral costs? Right? Like that's just not something the average person is going to know.

[00:15:04] So when they just go to a funeral home, they have no idea how much prices can vary for something, especially if they're just getting cremation for something that's ostensibly a commodity, right? One cremation at one funeral home is probably going to be the same as a cremation somewhere else, but they can vary from less than 1, 000 to 5, 000 for pretty much the same 

[00:15:24] Jill: thing.

[00:15:24] It's not like you say to somebody after their mom dies, like, oh, how much did you spend on all these different things? So you're right. People don't have any. Real idea of what it cost and I know for us We just always went to the same funeral home because that's just the one that our family used and there was no shopping around There was no thinking about it.

[00:15:42] There was no having a discussion. This is where we go and this is where everybody goes I'm gonna be like, there's other things that I could spend that money on. I don't have disposable income So to say if my mother were to die if I was going to take seven thousand dollars That's a lot of money that could go towards my child's education My Putting my mom in a box to put her in the ground.

[00:16:04] Right. Sounds like now, too, we're running out of places to bury people. I know somebody that works in funeral care in New Jersey, and she said she's heard of at least one cemetery that has now stopped taking people because they don't have any space. So eventually, that might not be an option anyway if we continue to go down the path we're going down.

[00:16:24] But I know there's a lot of things that I think if we continue to go down the path we're going down, we're just not. gonna be in the same place anyway. Life changes anyway, but it seems like we need some major changes in the next few years in order for humans to continue to exist at all. But we'll see, we'll see how that goes.

[00:16:43] Isabel: To speak to that, to that issue of sort of burial spaces. Here in Philadelphia, a lot of people will ask me what's the most sustainable way for me to dispose of my body. Is it burial? Is it cremation? There's a lot more disposition methods that are starting to be legalized in other states, and I would love to see that come to Pennsylvania here as well, called water cremation or alkaline hydrolysis, which is essentially where you get put in a chamber that's full of hot water and lye, and it requires about a third or a quarter of the amount of energy as a flame cremation.

[00:17:19] And then another one is natural organic production or body composting, and that is also supposed to sequester a lot more carbon than other disposition methods like or burials. And so here in Philadelphia, we do have green burial legalized. Green burial is something that you can do in all 50 states, but it varies how much availability there is in your particular state.

[00:17:43] But we have about two green burial grounds here in Philly, and they vary vastly in price. One of them is about 1, 000 and one of them is about 14, 000. The one that's cheaper, obviously there's more demand and that one is also going to be filling up in the next five to seven years. And I think from this space perspective, I would love to start a green burial ground here in Philly to try to maintain an affordable option for people who do want to do green burial.

[00:18:08] But another thing that we don't talk about enough is that even when you do green burial, a lot of those green burial grounds The whole point of green burial is that you're supposed to be able to basically treat the body like it's really going to decompose, right? You're only supposed to use biodegradable materials, so like a wicker casket or even just a shroud that's going to break down.

[00:18:31] And people, I guess, are more or less purist about it, but the whole idea is like we're really taking seriously this notion that you're going to decompose. And yet, a lot of cemeteries still don't reuse those grave spaces. Right? Like, there's very few cemeteries, I think there might be some cemeteries in, like, New Orleans that do reuse grave spaces.

[00:18:50] And then the only other one that I know of in, like, all of North America is a cemetery in Canada that reuses grave spaces. But after two to three years, people do decompose, and you could hypothetically reuse those graves. So, like, that's something I would love for us to be talking more about when we talk about sustainability, right?

[00:19:07] We could be reusing grave spaces, and we are just not. Even for places that are green burial grounds. Yeah, 

[00:19:13] Jill: there's one in Jersey, Steelman Town, that I've visited, and it's such a beautiful space. But you're right, even there, there's only so much room. Eventually, they're not going to have anywhere, and I would love to see some of those alternative methods as well in New Jersey.

[00:19:30] My husband and I have said, maybe in our long term plan, human composting. We're really big gardeners. I have my own compost, not for humans, not for bodies, but I have my own compost in the backyard. It's interesting because some of the places that do it, and then they spread some of that compost, how it's like regenerating these forests.

[00:19:48] And it seems to me like that would be a better Option, but then it's funny because Thanksgiving, we were having a conversation with some friends and her concern was with aclamation, even though I can't say the word, she was like, but then I'm going to end up in the Delaware. And we were like, wait, what?

[00:20:04] And she was like, what else are they going to do with the liquid? It's just going to end up in the Delaware. And I was like, well, there's probably bodies in the Delaware already that we just don't see, but I hadn't really thought of that either of this than what happens to the liquid because I know they say it can also be.

[00:20:20] put out onto the land, but I don't know, like I hadn't really thought about that idea. For some reason, it's more comforting to people to know that their body is in this little box in this place, even though the body's pumped full of chemicals and it's not really a body anymore. But there's this idea that if the body is just like broken down, it seems scarier to people, and I just hadn't really thought of that, but it made me laugh when she was talking about the Delaware, and I was like, eh, it's not really a big concern, but I don't know, I guess to some people it is a concern, and that's okay too.

[00:20:56] People can worry about what they want 

[00:20:58] Isabel: to worry about. Totally. I do think that that's a really legitimate concern when somebody is in bombs because formaldehyde is like a very toxic carcinogen and that's what they use in embalming and most of the time the real main concern around the formaldehyde, the use of formaldehyde is to the person who is embalming so it's mainly a health risk to the funeral director or the embalmer but When we talk about acclimation, the chemicals that they use are basically lye, like the stuff that's in soap.

[00:21:28] That's basically something that is in all of our drains all the time. And technically, even though I know this definitely grosses people out as like an ick factor, it's like safe to drink at the end. The water or the effluent that comes out of water cremation is 100 percent safe. It's not toxic. in any way.

[00:21:45] The point is that I totally get people's concerns around effect on the environment when it comes to embalming fluids, but I think that's less of a concern for 

[00:21:53] Jill: acclimation. Yeah. And actually, fun fact, soft pretzels are dipped in a lye solution before they are baked. That's what keeps them soft on the outside.

[00:22:03] And it's used in drain cleaners and it's used in hair straighteners and lye is used a lot everywhere, different places. Yeah, definitely. But yeah. It will actually break down a body. So that is pretty fascinating. When you do pretzels, you need to wear goggles and gloves because if it gets on your skin, it does burn it chemically.

[00:22:21] But in the oven, it bakes off and it is no longer toxic. Sometimes people are so grossed out. They're like, wait, pretzels are dipped in lye? What's in like drain cleaner? I'm like, It is. But this is food grade, I promise. But yeah, but we just dump the liquid down the drain, and it goes away, and it's fine. All right, so before we get too close to our time, I really want to talk about your guide that you created with Open Organization for Polyamory and Ethical Non Monogamy.

[00:22:48] Non monogamy and death care, an end of life resource for the non monogamy community. It's a mouthful, but it's being polyamorous. I hadn't really thought about it, you know, like my husband and I, we've been technically, I guess it was more like open relationship when we were younger, because like, we didn't know the term.

[00:23:06] But when I was in my 20s, I didn't think about long term of what is this going to look like if we have multiple people in our lives, multiple partners, people are going to be aging, people are going to be getting sick, who's going to take care of who, it was a lot of things I hadn't thought about until I became a death stroller.

[00:23:23] And then all of a sudden, I was like, Oh. I actually need to think about these things. And so when we met and you said you were creating this, I was like, that is amazing. It's such an important resource. I know a lot of us don't want to think about it. We don't want to think about our partners and our spouses dying.

[00:23:41] I get that. But the reality is, is we're going to have to face it. And in some ways being polyamorous, I think is going to be really helpful. but then it's also going to have its own challenges because it is a different relationship dynamic. So how did you get into this work? I just want to hear all about it because I think it's a great resource.

[00:24:02] Yeah, 

[00:24:02] Isabel: totally. This is part of the work that I do is helping to create resources through various organizations to help populations for whom the current death care system was really not designed for. And I think that the polyamory and non monogamy community is totally one of those communities. And so.

[00:24:19] The process that I use is basically like a very straightforward human centered design process that usually involves a workshop. And so what we did was we had open, put a call out to their members, you know, their newsletter, and like they have a discord channel and things like that to say, Hey, have you either yourself had an experience where you.

[00:24:41] had somebody who was one of your partners, someone in your polycule. There's a lot of like, open slash like poly terminology that I'm happy to explain for people, but it is really something that we don't think about very much. How often grave spaces are only sold in pairs most of the time, right? The assumption that you're only going to have one partner, or a lot of financial elements where you might be able to collect as a spouse on their, like, on their life insurance, on their 401k, all of those different accounts.

[00:25:17] Like, how many of those counts are able to be split up to go to multiple people? Things like that. And so that's something that you really have to think about as a non monogamous person. I'm also a non monogamous And so that is something that when we talk about One of the central tenets of human centered design is this concept called inclusive design.

[00:25:38] And the idea is that instead of designing, human centered design kind of came about as part of the tech world in terms of designing apps and things like that. And so In the tech space, you have this real sense of like, Oh, you have to fail fast. And you hear all of this rhetoric, but usually what that means when they're trying to scale, they just got a bunch of venture capital funding and they're trying to scale their app or whatever to millions of people.

[00:26:03] The people they test with are so often the exact people that every other system is usually designed for is cis white men, right? Often they're designing for themselves because a lot of people in the tech space are those people. And what that. results in is that so often the systems that we have, there's infinite examples, right?

[00:26:24] How nutrition labels were not designed for women. And so the calories are all based on men, right? And seat belts are super uncomfortable because they were designed for men and things like that. And so the idea behind inclusive design is that instead of designing for who you think The quote unquote average person is because often if you're a tech company, you're designed for the quote unquote average person that's going to look like you as opposed to designing for people who might know different languages, like things that are going to slow your project down, right?

[00:26:54] And the idea behind inclusive design is that instead of designing for the quote unquote average person, whoever you think the average person is. It's designing for the most vulnerable people. And the perfect example of this, are you familiar with OXO? Sort of like the kitchen appliance. I think their most iconic thing is they have these peelers that are very grippy.

[00:27:13] It's like a bicycle handle, right? But they also have these rubber bottom bowls and things that are just a lot more ergonomical for people to use. OXO. started out basically designing all of their products for people with arthritis and other mobility conditions, and that's the population that they were testing with.

[00:27:31] And because of that, they came out with this super grippy peeler that was, you know, very, like, chunky. People were using these tiny, like, metal peelers that are very uncomfortable to hold, right? And so, So that's a really good example of how designing for the most vulnerable populations actually results in a better result for everyone.

[00:27:53] Because if you design a death care system to be more inclusive of the non monogamous population, or of trans and non binary people, or of people in the queer community, like all of these things will actually result in a better death care system for everyone. right? Because trying to lessen the assumptions that go into the conversation that a funeral director is having with a family, where the funeral director is going to assume that maybe you as a child only have two parents, not only is that going to help people who might have four or six parents if they were brought up in a co parenting unit of more than a non nuclear family.

[00:28:32] That's not just going to help monogamous people. That's also going to help people with step parents. It's going to help people with all kinds of other situations that are not necessarily just that vulnerable population. But just lessening the assumptions of that a family is going to look a certain way is going to help everybody, right?

[00:28:49] It's just going to cause the funeral director to ask more questions and not make assumptions. And that's something that anyone would benefit from, right? That's sort of the central premise behind the creation of guides like this, is if we design for the most vulnerable populations, you're designing a better system for everybody.

[00:29:08] So, we went through this workshop, and the premise of all these workshops is that, like, I, as a polyamorous person, can think of the various ways that I know of that the death care system privileges monogamy and mononormative family structures, but at the same time, Doing a workshop like this where you have 30 people come in and contribute their experiences, I know I'm never going to be able to think of everything.

[00:29:30] And so using processes like that that includes everyone and allows everyone to contribute their experiences allowed us to create such a better resource because there's so many things that I would never have thought of. And so it's really coming at it from this perspective of even though I'm the one creating the resource, I'm not.

[00:29:46] the quote unquote expert. It's kind of just utilizing the hive mind to allow everyone to contribute their experiences and create these resources that are so rich in different stories and that are like basically produced in such a way that the community really has an ownership over it. And that's the kind of work that I 

[00:30:02] Jill: love doing.

[00:30:03] Yeah, it's a great guide. And you're right that we all have different experiences. And so some of the things that I would worry about and think about might not be the things that you would worry about and think about. But there's other people out there that are worrying about the same things as me and other people that are worrying about the same things as you.

[00:30:21] And so we need to kind of Include all of that because I had done a workshop once because partially I wanted the information with a lawyer and I was like, so if I'm in polyamorous, what do we need to know? And there was quite a few people that showed interest and signed up and that's the hard part. For me, at least there's still part of me that I don't always, it's not like I walk around with a sign on that says, Hey, I'm polyamorous, but I also don't hide it.

[00:30:49] And especially now, obviously with the podcast, I'm talking about it more now because I want to help. normalize it. And one of the big things that I hear so much is people are so worried for my children, but what about your children? And I'm like, well, there's a lot of studies that actually say children that grow up with polyamorous parents, multiple people, they're actually really well rounded.

[00:31:13] They have a overall good life. The only people that they ever hear anything negative from is people that are judging it. And I can't save my children from everything, but it's more normal than people. think it is. Just I think a lot of us still don't really talk about it. You're not necessarily going to see people out in public talking about it.

[00:31:34] Or even if I am with my partner and my husband, like we all went to Ikea together, the kids and my partner, my husband, it's not like people would look at us and be like, Oh, that's both of her partners. It just looked like I was there with maybe my brother and another man, right? I mean, it didn't look like anything out of the ordinary.

[00:31:52] So I guarantee you're seeing people all the time, you just don't realize what's going on. And that's okay too, but it is an important resource because I think there's going to be more people, and I'm sure the internet helps with that too, in the Philly area. There's, there's quite a community of polyamorous people that I've met and made some really amazing friends, even if they're not people that are partners.

[00:32:15] They're people that we've become very close friends with and I think we will all be there to support It's like we've kind of created this Unusual family but family nonetheless and so when somebody needs the help We will all step in and do what we can but it's great that now there's a guide to help us along the way.

[00:32:37] Isabel: One of the things that really comes up in that conversation is that on the one hand, it's a little bit like, as you mentioned, being poly is a little bit less visible than say, being queer, right? That is something that kind of, I feel like a lot of people associate sort of non monogamy with greyness, partially because there's a lot of overlap, but also because the marginalization that happens in our society kind of happens in similar ways.

[00:32:59] But there is. Actually, quite a lot of privilege that comes around being non monogamous because you're right, a child who benefits from even more than two incomes is almost certainly going to be better off financially than someone who is a single parent or just a dyad of parents, right? And so, There was a lot of ways that I think things would come up and it's like so nuanced and it's so interesting to think about these things because in a lot of ways, you assume that a married partner would be a lot more sort of privileged societally than a non married partner, but there are a lot of things that came up in this workshop where it's like, well, actually, from a financial standpoint, if your married partner has a lot of debt and then you as a spouse inherit that debt, you're actually kind of worse off than the non married partner, right, who might not be inheriting that debt.

[00:33:47] And how would that play out if you were to die suddenly, right? Things like that. There's just so many, there's so many different things that once you start thinking about how the world is designed that come up in very interesting nuanced ways. Right? One of the people that we spoke to for this resource was a lawyer based out of Texas and she gave us this idea to put in the guide of this freedom fund that's just like a fund that you put together just in case, with like six months rents or something so that even if you're living with a partner, for example, like they don't feel like they are.

[00:34:20] Obligated to sort of, you know, like people, people might find themselves in situations where they stay in a relationship because they don't have the financial security to leave, right? And so she's like, this Freedom Fund idea is something that you could implement in order to try to alleviate that pressure and allow people to have the autonomy that they might need if they did need an out, right?

[00:34:40] And it's sort of like that. Freedom Fund idea would also be super helpful in a lot of cases around dealing with death care expenses like a funeral, but it's also super helpful even in the case of having roommates. Like, how is your roommate going to have to cover your rent if you're someone who dies unexpectedly and you have six months left on your lease or something like that?

[00:34:59] So there's just so many ways in which thinking of these particular applications can be helpful to so many other people as well. 

[00:35:07] Jill: Yeah, because even if you don't If you get really sick and you can't work, not only is it going to be the medical bills, but then it's also the loss of income. And now, in our country, it's only going to be getting worse, but we don't have necessarily the funds to care for people, so it's not like if my husband were to get sick, I could easily be like, oh, no problem, I'll hire a nurse to come in every day.

[00:35:31] I can't afford that. Right. So who's going to take care of him? That's going to be me. So now we're losing his income. We're losing my income because I need to take care of him. And we're going to start to see more and more of that. And so yes, having a fund off. To the side, I think we have one and we just call it our oh shit fund.

[00:35:51] Yeah. You know, like, like, oh no, things, things got bad, but we have this money put aside. In case something does happen, because I mean, the reality is, it's probably not an in case it's more of when, when something happens. And ideally, we're going to be a lot older. But I don't know that we're both in our 40s.

[00:36:11] I like to think my husband, my partner, his partner, her husband, we're all in our 40s. Potentially, we're all going to be really healthy and live another 50 years, or we could start one by one over the next 40 years, having to deal with different health problems. And it's the reality, whether we want to admit it or not.

[00:36:33] That's why we just need to talk about it. We need to have the conversations. I talked to my husband all the time. We were at a party the other day and he walked up and I was like, guess what we're talking about? And he's like, let me guess death. And I was like, of course we are. He's like, I love bringing you to parties.

[00:36:46] I'm like, thanks, honey. I love you too. But it's the truth. Him and I talk about it openly all the time, but it's not the case with everybody. There's other people in our bubble that are still a little bit more resistant to it and talking about it. And, but we have to, we have to think about it and talk about it and having a guide to kind of follow along.

[00:37:08] really helps even as a death doula. There's again, there was things that I hadn't really thought about until I read the guide. I was like, Oh, yeah, I guess we need to think about these things too. I guess I need to talk about these things. So I'm definitely going to put a link in the show notes. So everybody that needs the guide or even just wants to look at it out of curiosity because you're right, whether you're monogamous, straight relationship, like you check all the boxes of heteronormativity.

[00:37:33] I don't have to run. I can't say that word either. heteronormativity. Thank you. Yeah. Thank you. Even if you check all those boxes, this is still a guide that if you wanted to read through it, it will give you other things to think about that maybe you hadn't already thought about. So definitely check it out because it's awesome.

[00:37:52] You did a great job. It's definitely well planned and well researched and resourced and all of that. So really, it's awesome. You did a great job on it and it's free. Which is amazing. So thank you so much for providing that for a community that I care a lot about. Of 

[00:38:11] Isabel: course. And thank you because you were one of the readers on it.

[00:38:14] So I appreciate all of your help with that as well. 

[00:38:16] Jill: Yeah, I appreciate having the opportunity because it's something that there's so many things that I would love to do. I have a million things I could do and I could do them for free and I would love to do them all. But I also need to balance it with Having two children and still trying to make an income and at this point that income is coming from a couple of different places, like I'm still partially in food service, I still teach a little bit and I read tarot cards and I do get some money from death duel work and so I'm trying to pull it all together and it was really awesome to be able to read through it and give some feedback and be a little part of a project that is something I would have done, but I definitely can't at this point, so.

[00:38:56] Yeah, totally. 

[00:38:57] Isabel: Yeah. 

[00:38:58] Jill: So I'm glad you did it. Is there any last things you want to leave us with in the last couple of minutes that we have together? The thing 

[00:39:05] Isabel: that I have been thinking about most recently as one of the things that I'm doing this year is turning 30. And a lot of my sort of end of life planning clients, when we talk through our celebration of life or a funeral planning session, so many people say to me, Oh, like, is it that super morbid the work that you do?

[00:39:25] And I'm like, Oh my God. Talking about what you want at your funeral is literally just thinking about your favorite people, and your favorite food, and what songs you like. It's an incredibly life affirming thing to do, and so I really encourage people not to shy away from it. The fear of death is one thing, for sure.

[00:39:43] But the actual planning piece is sort of like planning any other thing. And one of my clients recently had this idea to do a living funeral where she has a photo booth confessional sort of thing going on. She's gonna have an open mic session where people can all talk about the ways in which she's impacted their life, but then also if there's something they don't want to say in public, they can go into this little photo booth thing.

[00:40:08] And they can write her a letter, or they can actually record a video of themselves saying whatever it is they need to say to her, and save it on a computer. And that was something that made her really think like, wow, I really would love to have those videos sooner rather than later. So I think I'm gonna maybe do this even for, uh, I don't remember exactly how old she is.

[00:40:28] She's like either in her 40s or 50s. So she's like, maybe I'll do this for my 50th. birthday party instead, you know? And so that really inspired me to be like, wow, I should have a super big 30th birthday party where I can do a similar thing and just really have it be an opportunity to reflect on the relationships that we have in a really intentional way.

[00:40:48] I think that's the kind of thing that you often see at a wedding, for example, when people take some really intentional time to compose their vow, compose their speech and things like that. And I am just always looking for more ways. For people to do that and give people an opportunity to do that because I don't think it's narcissistic I think that all the people who really that I know who like make a big deal out of their birthdays For example, I love getting the opportunity to celebrate them.

[00:41:10] That's why we have celebrities We actually love celebrating people, you know, and so I would just really really encourage people not only Obviously, obviously, I think keep everyone should plan the funeral and do all the end of life stuff. But also Part of the reason I love working in death care is just because I think that people who work in death care and think about death are living really intentionally.

[00:41:30] And I just encourage everyone, no matter where you are in your life, no matter what your relationship with death is, regardless of whether you make your funeral plan, to just create those spaces in your life. Where you can really bring your community together and do some intentional meaning making in your life because it's so important and no one ever regrets it.

[00:41:48] You know, it's such an important thing to do. So I'm throwing a huge party for my 30th birthday this year in the Woodland Cemetery in Philadelphia. So you're invited, Jill. Yes! 

[00:41:57] Jill: I will be there. I love that cemetery. It's so beautiful. 

[00:42:00] Isabel: I know! I love it! That's the way that I'm trying to make that space for intentional reflection on how my life has gone and what it's going to be.

[00:42:08] And I just think that everyone should do that. I agree, 

[00:42:11] Jill: everybody should do that, and you're right, it's not morbid, but we have this idea that talking about our death, or what it's gonna be like when we're not here, is morbid, and I understand. It makes my daughter really sad, she's ten, and so it's like, the idea of me not being here one day makes her sad, and I'm like, of course.

[00:42:30] They will be sad and that's okay, right? It's okay to be sad. We can't have happiness if we don't have sadness. We need everything in life in order to feel good. We also unfortunately need to feel bad sometimes or else we wouldn't know what good actually feels like. We need it all. Yeah, this was amazing.

[00:42:47] Thank you so much. I'll put in the links. So again, this resource that we've been talking about, I'll put your website. Do you have any other social medias or anything you want people to hop onto? What do you want to have people go to, to find you? 

[00:43:01] Isabel: So if you want to find me, my main social media channel is on Instagram and my handle is just at the death designer on Instagram and that's where you can find out all the things that are going on with me.

[00:43:12] So thanks so much. 

[00:43:14] Jill: Yeah. Yeah. Thank you. It was a pleasure and I'll have to have you on again sometimes. I feel like there's so many other things that we could have talked about. Oh, I 

[00:43:22] Isabel: know. Totally. Awesome. 

[00:43:24] Jill: Well, thank you again for being my guest 

[00:43:28] Isabel: today. Yes, of course. Thank 

[00:43:30] you 

[00:43:30] Jill: for having me. Thank you for listening to this episode of Seeing Death Clearly.

[00:43:35] In next week's episode, I talk with Dr. Kim Harms, author of the book, Are You Ready? How to Build a Legacy to Die For. Kim shares her journey of overcoming unimaginable loss. including the suicides of her mother and her son, and then her husband's death. Through her grief, Kim explores the societal taboos surrounding death.

[00:43:58] Advocating for a more open and accepting approach. She emphasizes the importance of embracing joy amidst sorrow and cherishing moments with loved ones. Kim's book delves into legacy building, conversations about death, and practical preparations for the end of life. Kim inspires listeners to confront grief with resilience, forgiveness, and reconciliation.

[00:44:22] Join us next week to hear more about Kim's insights into life, loss, and the journey towards healing. If you enjoyed this episode, please share it with a friend or family member who might find it interesting. Your support in spreading the podcast is greatly appreciated. Please consider subscribing on your favorite podcast platform and leaving a five star review.

[00:44:41] Your positive feedback helps recommend the podcast to others. The podcast also offers a paid subscription feature that allows you to financially support the show. Your contribution will help keep the podcast advertisement free, whether your donation is large or small, every amount. is valuable. I sincerely appreciate all of you for listening to the show and supporting me in any way you can.

[00:45:02] You can find a link in the show notes to subscribe to the paid monthly subscription as well as a link to my Venmo if you prefer to make a one time contribution. Thank you and I look forward to seeing you in next week's episode of Seeing Death Clearly.