In the introduction to their book Rebellious Mourning: The Collective Work of Grief, queer Jewish anarchist Cindy Milstein writes “Our grief—our feelings, as words or actions, images or practices—can open up cracks in the wall of the system.” I was inclined to revisit this book after working on this Queering Death series, both because Zena Sharman, writer of the series, writes about death itself as a collaborative experience, and because the series pries open the idea that queer death can, too, expose such cracks in the system.
Death, for better or worse, is not limited to the bodied act of leaving this form of existence. When we discuss it here, we’re also talking about grief, mourning practices and rituals, end-of-life, the death-care industrial complex, and even seemingly pragmatic aspects like bereavement leave policies. Then we add in the element of queerness, and not “queer as in ‘Love Is Love,’” but queer as in chosen families, non-traditional relationships and leather community, to name a bit of it. And queer as in not always accepted by society or our families of origin, queer as in systematically disadvantaged and so on.
Add to this the intersecting oppressions many queer and trans people face, and it’s no real surprise that the conventional ways of thinking and dealing with death under white supremacy and capitalism do not work for many within our communities. But what do we do with this knowledge? How do we challenge the norms around death? What are our options? And can we think beyond alternatives—dream ways not only of tolerance or accommodations, but truly dying authentic deaths, as we live authentic lives? How do we, and our loved ones, aspire to experience deaths as queer as the lives we live?
These are some of the questions posed in the series. Its six parts cover reimagining how we die and mourn, queering end-of-life planning, reclaiming death care, bringing pleasure and eroticism into the end-of-life experience and challenging dominant ideas of how we grieve. These pieces are empowering, challenging and joyous, and they allow us to imagine ourselves fully into our dying days and beyond. In advance of the series’ launch, I sat down with Sharman to talk through how this series came to be, its importance and why, ultimately, we should be talking about this.
What are some of the ways queer and trans people and communities experience death that are different from the run-of-the-mill cishetero experience? Why are the intersections of queerness and death important to be talking about?
When I was first thinking about this question, the phrase that came to mind was “We’re all going to die.” And there’s simultaneously the universality of that, but also really recognizing that when and how LGBTQ2S+ people die—as well as the ways in which we experience and relate to death—are not universally the same as cishet folks. We don’t experience equitable access to knowledgeable and affirming end-of-life or funeral care providers, for example. And, as is so often the case for our communities, these inequities and barriers to access are exacerbated for folks who might also be BIPOC and/or disabled and/or living in poverty—basically anybody who’s bearing the brunt of systemic oppression.
I also think queer people are experts at breaking silences around topics that might carry stigma or the sense that they’re culturally off-limits. We’re really brilliant and wildly creative as a community in articulating our needs and our desires and navigating systems and institutions not designed for us. These skills are applicable to death, too.
What do you mean when you say “queering death”? What exactly is “queering death,” in your opinion?
When I think about queering death, I think about it as a way to challenge dominant ideas, practices and narratives that often get in the way of or limit our ability to express who we are at every stage of our lives, including when we die. So when I think about queering death, dying and mourning, I notice the ways in which they can become sites of creativity, collective care, self-determination and resisting oppression.
To me, queering death is part of a larger liberatory project aimed at transforming the conditions that inequitably cut short queer and trans people’s lives, while simultaneously working to create the conditions under which more of us can die as queerly as we live.
You write about personal and professional inroads to this topic; do you want to share some of the different perspectives you approach this subject matter from?
When I think about my own perspective on death, dying and grief, I think about the profound influence of the experience of being a family caregiver to my mom while she was dying 10 years ago. That experience as a caregiver for my mom at the end of her life showed me how confusing and overwhelming it can feel to deal with death.
One of the ways I coped with that experience and my grief from it was to start seeking out more knowledge about death, dying and grief. By virtue of that, and by virtue of my experiences, I became an informal go-to person in my circles for this kind of information and support, especially as my peers and I have gotten older and more people have experienced the death of loved ones. I also started writing about death and dying in relation to queerness.
I did death doula training in the summer of 2022, which I sometimes describe as being akin to first aid training. It’s not something I want to do as a job, but it was a way to go deeper into gathering the kinds of knowledge and skills I want to bring back into the queer and trans communities I’m a part of so that I can be of greater service to folks around death and dying.
Reading the pieces in this series, I often thought about the topics of rights over liberation. In my mind, these are two very different things: one feels like advocating for legal and societal rights to essentially live like straight people—and one feels like the freedom to live subversively. Do you think this applies when we’re talking about how we die, too?
I think a key distinction is something I’ve learned from Patty Berne of the disability justice performance project Sins Invalid: rights-based strategies often look at the symptoms of inequities, while justice-based approaches aim to understand and transform the root causes of those inequities.
When I apply this kind of thinking to death, dying and grief, it becomes about reckoning with the systems and institutions we’re interacting with. Where did they come from? Who designed the hospice care system? Who designed the funeral industry? Who are they for? And so often the answer is, not for us.
You write about other marginalized communities—and the intersections of those and queer and trans communities—also requiring changes to how death care happens. What is it about traditional death care that makes it not work well for many systematically oppressed people?
I think that mainstream death care is really built around a cis, heteronormative, mononormative, white, abled, economically privileged ideal, and that ideal doesn’t align with the identities and experiences of many communities, including LGBTQ2S+ folks. That influences the way end-of-life care providers are trained, for example, or the way funeral directors might be taught or not taught at all about how to care for our communities. And then there’s also the huge barriers so many folks face in terms of being unable to afford or access care, full stop.
In queer, feminist and activist circles, the idea of bodily autonomy comes up a lot—in relation to reproductive rights, consent, transition, size, sex work, all kinds of things. Do you think there’s an element of this in how we should be thinking about end-of-life and beyond?
Absolutely. I think the experience of being cared for at the end of our lives, for many people, is an experience where we might be receiving bodily care in sustained and intimate ways. This might include support with things like bathing, toileting, eating and drinking—while we’re still eating and drinking—and also care for our bodies after death. What does it mean to actually have your body cared for by funeral providers, or folks in your community or maybe both? Just really thinking about how deeply embodied those experiences are, I think bodily autonomy and also self-determination are salient concepts here.
I think about things like, for example, how trans and gender-diverse communities and people can feel empowered to take action to help ensure that their gender identities and expressions are respected while receiving hospice care and funeral care. Thinking about that in relation to taking steps to make sure that the folks who count as family to you are the ones who get to make decisions for you if you’re not able to, and are able to be present with you during and after your death—all of these are ways in which we can enact that kind of bodily autonomy and self-determination.
In Part 3 of the series, you talk about making death a more collaborative experience—can you speak to that?
Part 3 of the series is fundamentally about what our own planning looks like around end-of-life.
Typical models assume that there’s only one person who executes that planning: your spouse or a single immediate family member. I love the idea of being able to pull back and say, who in our circles is really good at particular things? Who do I trust to make certain decisions for me? Maybe your triple Virgo best friend is the person who wants to be your executor because they’re super organized and really good at paperwork. And maybe your cool-headed and really compassionate chosen sibling is the person who’s your healthcare decision-maker. And then maybe your partner actually gets to just have the space that they need to be fully present with you during and after your death. I like that opportunity to think about how we might come together more collaboratively, and be intentional about who we might ask to help us, and how.
More broadly, I’m interested in how we might build on the skills and practices we already have in LGBTQ2S+ communities to be even better at showing up for each other around death, dying and grief. I explore this topic in the series, too, in relation to end-of-life and funeral care and grief support.
In this series, you also talk about calling a local funeral home to find out about their inclusivity policies, and you mention that experience made you nervous. Can you tell us a bit more about that?
I would say some of that nervousness is rooted in a history of experiences that I’m sure will be familiar to most, if not all, queer and trans people: physically and emotionally bracing ourselves for potential discrimination when we’re outing ourselves to some kind of care or service provider.
I do genuinely believe that people in the funeral industry are deeply committed to bringing dignity and sensitivity to the folks that they care for. But, simultaneously, a lot of them lack the knowledge, skills and training they would need to be able to provide culturally competent care to LGBTQ2S+ people. My anxieties about this were also compounded by being someone who’s newer to living in a smaller community where I haven’t yet got a clear read on who tends to be more queer-friendly.
I did think it would be unlikely that I would be met with outright hatred or overt discrimination, but it’s important to acknowledge that this does happen. There’s a case in the U.S. that Lambda Legal is fighting currently that was brought forward by a gay man named Jack Zawadski, who was suing a Mississippi funeral home that refused to cremate his husband, Robert Huskey, when they found out he was gay. They basically said, “We don’t serve your kind here.” And it was the only funeral home in their small community.
So, thinking about all these kinds of things, I was conscious that I might be met with a lack of knowledge and understanding. At the basic level, just potentially an awkward phone conversation. It can feel anxiety-making a cold call to anyone, full stop. Let alone to be like, “Hello, funeral home, do you know how to care for queer and trans people? What about my four-parent family? How about my non-binary partner?” But I was pleasantly surprised to find out that the one I called happened to be owned by a lesbian couple, which I definitely did not expect.
Part 5 of the series talks about pleasure and eroticism as part of end-of-life. I remember this feeling particularly radical when you first ran it by me. Do you think this is a particularly progressive, or even contentious, idea?
I would say it probably depends on who you ask. There are ways in which sex and death are symbolically tied together in certain aspects of culture, including as topics that can both be off-limits. But I started thinking about pleasure and eroticism in relation to end-of-life during my death doula training when we were having an important conversation about strategies for reducing pain at end-of-life. In my class, I asked, “And also, how might we increase pleasure at end-of-life?”
It was a line of inquiry inspired by my queer perspective on death and dying, as well as by my learnings from Black queer feminist works like Audre Lorde’s essay “Uses of the Erotic: The Erotic as Power” or adrienne maree brown’s book Pleasure Activism: The Politics of Feeling Good.
In asking these questions, I’m mindful that pleasure and eroticism are integral to the lives and identities and relationships of many LGBTQ2S+ people. So, if we want to work from the assumption that queering death involves creating the conditions for us to die in ways that reflect how we’ve lived our lives, then it makes sense to me that for some people, this will encompass pleasure and eroticism.
You write about a lot of alternative funerals in this series and it made me curious about the potentially joyful ways you’d want to be mourned: when you think about your own loved ones and/or community gathering for you, do you imagine a dress code, signature cocktail or mocktail, a specific party favour?
I sometimes imagine having a living funeral where I come together with my community while I’m still alive, an idea inspired by queer elders like Shatzi Weisberger, a Jewish dyke, death educator and activist who had what she called a FUN-eral when she was 88. Four years before she died, she got people together for a big living funeral party. I like imagining doing something like that with my chosen family and community.
I also think about my own experiences, in particular the experience of attending the memorial gathering that was held for Catherine White Holman in Vancouver in 2009. Catherine was a queer femme, leatherdyke and a social worker who did work around queer and trans health, and she died really suddenly. The community came together in mourning around that loss. I remember being at that gathering when there were hundreds of queer and trans people who stopped traffic. We didn’t have any permits; we just lined the road and stopped traffic so that an opera singer and a femme honour guard and her pallbearers could carry Catherine’s coffin into the community hall that they had rented for her memorial. It was the same community hall where she had gone to and also helped organize play parties, and it was a space where people gathered and sang and told stories and cried and laughed and sat with her in that space of memorialization and celebration. That was a really, really powerful experience for me of queer collective mourning, and seeing what is possible when we can come together around the death of a beloved person in our community.
When I think about queer grief and death, and particularly of visual and media representations of that, I always think about the early part of the AIDS epidemic. Do you think the way queer people advocated for each other in hospitals and death care in AIDS organizing changed how queer people talk about and organize around death?
I feel like it’s important to acknowledge that I answer this question as someone in my mid-40s who was a young person and not an out queer person at the height of the AIDS crisis, and so unlike folks older than me, I don’t have the lived experience of going through what I think of as an experience of such immense death, and the profound collective trauma and collective grieving that accompanies it.
I think that the AIDS crisis was a formative experience for queer and trans communities and continues to be in many ways, including through the formation of community care practices around death and dying. Whether that’s about forming hospices or other community care practices to care for people who are dying and who might be excluded from or not able to access care through dominant systems, or through activism around things like appointing healthcare decision-makers and making sure that people’s chosen kin were able to care for them at end of life, and also to be recognized as their family members after their deaths.
I also look to the politicization of queer death, dying and grief through the work of groups like ACT UP and the political funerals they held where they were literally carrying the bodies of their dead through the streets of cities like New York and Washington, D.C. Or through things like the Ashes Action, where in an act of politicized, collective grieving they gathered together in a procession through the streets of Washington and threw the ashes of their dead loved ones on the White House lawn.
I think of those examples as part of these lineages and histories that we can look to and learn from. Just like we can look at things like the origins of the Trans Day of Remembrance, which also was an act of politicized, collective mourning and collective grieving that lives on and feels so very salient in these times. There are many ways in which many people in LGBTQ2S+ communities have learned to care for each other around death and dying, just as we’ve learned to care for each other and have developed incredibly sophisticated care practices in the face of systems and institutions that so often abandon us, intentionally exclude us and in some cases, are outright seeking to eradicate us.
My preoccupation with queering death is fundamentally about learning from and remembering my responsibilities to these lineages of resistance, creativity, self-determination and collective care. Fighting back against the conditions that cut short too many LGBTQ2S+ people’s lives is integral to queering death. So is ensuring that every one of us is respected, honoured and shown love and care during and after our deaths. Queering death is about how we live as much as it’s about how we die.
Inside the Queering Death series…
1. Xtra senior editor, politics, Tara-Michelle Ziniuk interviews series writer Zena Sharman on the scope of the series, introducing readers to the topic and upcoming themes
2. We live queer lives, and thus should die queer deaths. Find out what exactly this means, and about some of the people who have already done so.
3. End-of-life planning doesn’t have to be the beige and bureaucratic; it can be “wonderfully queer,” and we explain how.
4. The death care industry wasn’t created for us, our families or our relationships—but we can take matters into our own hands and away from these institutions.
5. It might sound taboo, but it is possible to bring pleasure and eroticism into the end stages of life. And why not increase queer joy whenever we can?
6. Dominant narratives of grief don’t suit our realities, so let’s turn them on their heads and figure out what grief looks like from an LGBTQ2S+ perspective.
Next up: What does it mean to die queerly? What does it mean to mourn queerly? In part two of our six-part series, Zena Sharman writes about what it means to really queer death—our understanding of it, and the real thing.