Let’s Talk About Death, Baby
Meet some of the leaders of the growing "Death Positivity" movement
By Katja Vujić
On a lazy Sunday afternoon, the local coffee shop in your town is a bit busier than normal. A group of people sit in a makeshift circle – in armchairs, and on stools, sipping warm drinks and munching on baked goods. After eavesdropping, you realize it’s not a group therapy session, but a cluster of people discussing death. It’s what is better known as a Death Café.
The number of Death Cafes is dwarfed by the number of Starbucks, but they are part of a growing movement commonly referred to as “death positivity” or “death acceptance.” The movement encourages people to talk about death, plan for death, think about death, and most importantly, accept death as a reality. The idea is that by accepting death you make room for a happier, more satisfying life.
Gail Rubin, A Good Goodbye
Gail Rubin, 60, hosted the second ever death café in the US in Albuquerque, NM in 2012 and has slowly built a career of death education endeavors, even trademarking the moniker “Doyenne of Death.” Rubin, a cheerful Baby Boomer, approaches death with a comedic lilt. When giving talks, she regularly references funny TV shows and movies, like an episode of the Mary Tyler Moore Show titled “Chuckles Bites the Dust.” Her focus is on planning for death; she wants to ensure that as many people as possible can experience what she calls “a good goodbye.” Primarily, a good goodbye is knowing what you want and being able to communicate that to your loved ones, so they can grieve without the stress of planning a big event or worrying about what you might want in the end stages of your life.
The first Death Café, however, was held in the UK in September 2011 by Jon Underwood of Hackney, East London. It’s a simple concept: a group-led discussion about death, accompanied by food and drink. Underwood and fellow originators created a guide for starting and running a Café and today, 6639 Death Cafés have been held in 56 different countries by a growing roster of “death pioneers,” including amateurs with an interest in the topic and professionals whose work centers around death and dying.
“People are very often more comfortable talking about death with strangers than they are with their own family members,”
Rubin says Death Cafés are a low-pressure way to give people a safe, supportive environment to talk about a highly emotional issue, one that many people have trouble discussing or even thinking about. “People are very often more comfortable talking about death with strangers than they are with their own family members,” she says.
In addition to the Death Café movement, Rubin also helps plan and host the Before I Die festival in New Mexico; this year’s upcoming festival is set for October. Events in the festival include daily Death Cafés, as well as movie screenings, cemetery tours, a booth at the Dia De Los Muertos festival, and more. Such festivals are popping up around the country, and most include a “Before I Die” chalkboard – maybe you’ve seen one in your own town. First created in New Orleans, LA, by artist Candy Chang, the chalkboards ask a simple, fill-in-the-blank question: “Before I die, I want to ______.”
Justin Magnuson, Before I Die Festival
Justin Magnuson, a cofounder of the Before I Die Festival in Louisville, KY and veteran Café host, disagrees with the term “death positivity,” – after seeing a close friend lose a child, he feels that death isn’t something that should necessarily be associated with a spirit of positivity – but his goals align with those of the movement. He’s seen firsthand the growing interest in the topic, as well as the slow acceptance of the movement by local health, hospice, and palliative care organizations. Such organizations are clustered in Louisville, and many were at first resistant when Magnuson started suggesting Death Cafés. “We have sick care, but I think there’s a lot of people in that sick care model that don’t want to include death,” says Magnuson.
But you can’t argue with results, and the effectiveness of the Death Café model has helped to change some minds. In fact, Magnuson’s supervisor in his job at the UofL Institute for Sustainable Health & Optimal Aging, who has a background in palliative care, was skeptical of the concept when he first told her about it. But after attending an event with Magnuson, she changed her tune and is now involved in Death Café events. “Basically, I recruited her,” says Magnuson. And many of the same people who were resistant when Magnuson first started telling them about Death Cafés have become supportive after seeing them in practice.
It’s not always easy to draw a crowd for the larger Before I Die Festival in Louisville, but some of the most popular events have been author talks, art shows, and an interfaith panel. “Everyone has a slightly different way into the conversation,” says Magnuson. He and his team work to plan events that will appeal to the most people.
The Order of the Good Death, a nonprofit based in Los Angeles, has been the primary propeller of the death positive movement; the term originated with the Order’s cofounder, mortician Caitlin Doughty. Its membership consists of academics, artists, death professionals, and others who are doing interesting work around death. They are a nonprofit organization, and one major branch of their work is the Death Salon. Held at least once a year in various locations, Death Salons are more intellectually-minded discussions about history, culture, and ideas surrounding death as opposed to personal experience or death planning.
Megan Rosenbloom, The Death Salon
The first Death Salon, in Los Angeles, CA, was founded by Doughty and current director Megan Rosenbloom, a medical librarian. Salons have been held in London, San Francisco, Seattle, and the next one will take place in Boston at the end of September 2018. A Death Salon is set up like an academic conference, with talks given during the day, but includes evening events that are more lowkey and social. Attending a death conference might seem like kind of a bummer, but Rosenbloom says that’s not the case; in fact, attendees are generally happy and excited to be there. “That’s been really cool, to see how people become friends and share info and then go off and do their own projects,” she says.
Rosenbloom’s own interest in death grew from her involvement with the Order of the Good Death, and it’s changed the way she lives her own life. Truly accepting the fact that her life is finite, that she won’t live forever, has allowed her to value each moment of it more fully. She compares it to water; as a child growing up in Philadelphia, Rosenbloom regularly let the water run while brushing her teeth. She never really thought about the importance of water, because it was always there and seemed like it always would be. But after moving to LA, where water conservation efforts are more widespread, she has been able to recognize and appreciate water as the precious, limited resource that it is.
The same thing is likely to happen when you accept your mortality, she says. “I think I’m a more present and grateful person because of my orientation [towards] thinking about death all the time,” says Rosenbloom. The knowledge that her life is finite allows her to value every moment of it more than she did before, to pause and appreciate experiences that she might have just rushed through before.
Jullian Tullis, Order of the Good Death
Jillian Tullis, an associate professor of Communication Studies at the University of San Diego and a longtime member of the Order of the Good Death, has experienced a similar effect, both with Death Salon and in her own research into death communication. “Especially if I’m doing research with dying people, or I’m just [hospice] volunteering, there are days when I’m like: Man, this shit is sad. You know? This is sad,” says Tullis. “But I also end up picking up the phone and calling people I care about, and telling them that I care about them and that they’re important to me.”
“I am concerned that, if people don’t know that they’re dying, how do they live out their last days?”
In her research, Tullis has seen that healthcare providers and physicians sometimes don’t know how to speak clearly about death. Even in hospice care, it’s rare to see people having direct conversations about it. Outside of hospice care, this avoidance can lead to a bad death. “Some of the physicians that provide care assume that their patients will figure [out that they are dying], or that the patient will ask,” she says.
That doesn’t always happen, and a lack of clear communication can lead to a miscommunication about the severity of an illness. “I am concerned that, if people don’t know that they’re dying, how do they live out their last days?” she says. Often, the realization that one will die soon is a major motivator to check things off the bucket list, or make basic preparations for the funeral and legal arrangements.
Ultimately, death positivity – which, for members of the Order of the Good Death, means actively engaging with and thinking about death – is a social justice movement. All humans die, so this intersects with every issue confronting humans during life. Ultimately, the goal aligns with that of all other social justice movements: to give all people agency and empower them to have control over their own lives…and deaths. “We’re all about having choice”, says Rosenbloom. “You should have it the way that you want it, to the best extent that you can.”
Talking about death is hard. Experiencing the death of a loved one is harder. Grief isn’t going to disappear just because you talked about it first. But it’s kind of like when people in California nail down their furniture and take other preparatory measures in the case of an earthquake. Nobody wants it to happen, but it eventually will, and the experience will be improved for everyone involved if they are physically and emotionally ready for it. As Rubin always says, talking about death doesn’t make you any closer to dying. But it’s possible that becoming more death positive will bring you closer to truly living.
About the Writer
Katja Vujić, 22, was born in Zagreb, Croatia, and raised in Nashville, Tennessee. She is a writer interested in stories that dig into the complexities of human life. “And” is one of her favorite words because it is the bridge between realities that seem to contradict one another. She loves cats, books, intersectional feminism, and bread, among other things. She was the editor in chief of Your Magazine, and has been published in the Boston Globe and the Improper Bostonian. You can find her on twitter @katja_vujic and on Instagram @kv.jpg.
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