Busting Taboos

Jessie Williams, a founder and executive officer of Australia’s Groundswell Project, and one of the instigators behind the death literacy movement, is fantastically articulate. So when she connects death and grief to love, there’s no wondering if she’s said exactly what she means.

“I’m on a mission, to invite people [...] to be a part of the experience of grief, be a part of the experience of loss, be a part of the experience of dying. Because it is such a privilege and it’s just—you know, there’s just so much love there. And that’s what I think life is about, really.”

But you don’t get the love part out of the death experience if you’re standing too far away from it, or somehow tangled up in your feelings of not quite knowing how to react when faced with death and dying—and definitely not if you’re second-guessing yourself. Which is exactly why she launched The Groundswell Project. Her ultimate goal is to create a more death-literate society, one in which death is a community experience, shared and helped along by many. Or, as Groundswell’s mission plainly puts it: “Our vision is that when someone is dying, caring or grieving, we all know what to do.”

Jessie recently sat down with Amy Malden, creator of the podcast “Asking for It,” to talk about that vision, and that invitation she offers. You can listen to the full podcast here—and we recommend you do, because it’s packed with gentle but profound insights—but here are a few snippets of Jessie’s wisdom (answers have been edited to create brevity for reading):

Creating a death-literate society

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AM: What is it you are asking for?

JW: I’m asking for people to have a relationship with their mortality. For 200,000 years of human history we have taken care of our dying, in our families, in our communities, and in our friendship groups, and we’ve actually done it quite well. And yet something seems to have happened in the last few generations where we’ve lost the skill. I’d like those skills to come back, and I don’t think it’s a matter of training people. More likely it’s a matter of us just being present to the fact that we’re here, we’re alive—how wonderful!—and most likely we will experience a dying phase of our life. And that’s about recognizing that we are mortal creatures.

Stumbling through Loss

AM: Have you always had this kind of articulate relationship with mortality?

JW: God no. In my 20s and 30s, I was just achievement-oriented. Like many women in my 30s, I got pregnant, and then my my baby died during labor. We had a three-day vigil at home with his body, and everybody came to meet him. And people told me years later that that really kind of shifted their view on themselves and their view on their life. And I didn’t recognize the impact of that experience until years later.

What I and my community were able to do, is we were able to grieve together and share compassion with each other really well.

AM: It’s the importance of rituals and gatherings...

JW: Ritual is something that we often, as westerners, see as something that happens overseas or in other cultures. And the heart of our western democracy is notions of privacy and individualism, right? So knocking on your neighbor’s door and saying ‘Are you okay, how can I help?’ is actually kind of a weird thing to do, in a western democracy.

So then to actually take a further step, to say actually we’re going to stop work, we’re going to lay down our pens and lay down our busy and we are going to sit in the presence of  loss—holy shit, that’s weird! That’s really weird. And actually how do you do it? Is there a formula? Is there a guide?

We didn’t know how to deal with our son’s body. We didn’t know how to invite people. We didn’t know how to set up the room. We just stumbled through it, but that’s the art of living. And the experience of not knowing what to do, and having permission to stumble through was is incredibly empowering I think.

Disrupting Death's Taboo

AM: Tell me a bit about Groundswell Project.

JW: We’ve been around for eight years now, and we set out to, I suppose, disrupt the taboo around death and dying, and so we ran about 60 arts projects across Australia with young people, and working with theater projects and so forth just to get the topic on the table. And about two years ago there was just this explosion in consciousness in Australia around death and dying—a culmination of the baby boomers going into their twilight years, we kind of had that big year of celebrity deaths, and then the politicians and the policy people got interested.

And so Groundswell really got on the map at that point. We created a public-health campaign called Dying to Know Day where on August 8 we invite Australians to hold an event: it can be friends in your lounge room, or it can be a theater piece, or it can be a film night, or it can be a death café. And we just decided that death needs a day. It needs a day just like everything else needs a day and so what are you “dying to know?”

We’ve had more than 400 events across the country, and that’s really cool.

Building Compassionate Communities

JW: The other major body of work we have is a model called compassionate communities: its central tenet is that everyone has a role to play in death and dying, that actually the way to do dying is to do it with that village mindset. And so we do research with Western Sydney University where we look at how do we turn friendship networks into care networks, and social networks into care networks?

Research shows that actually you need 16 people to help you die at home. When you think about that it’s like, ‘Oh, who’s going to be my tribe? Who are going to be my peeps?’ And we think that’s a pretty awesome conversation to have when you’re alive, when you’re well, and when you’re productive. It brings your focus to the quality of your relationships—which is kind of cool.

So you know death is a powerful catalyst for community building, it’s a powerful catalyst for your relationship building, it’s a powerful catalyst for your wellness. It’s kind of weird when you think about it because most people think it would be a morbid conversation to have—but we find it’s anything but.”