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The Death and Dying Movement: A Change in Attitudes is Underfoot

The Death and Dying Movement: A Change in Attitudes is Underfoot
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When I wrote Death Cafes: Tea, Cake & Conversations about Dying for FITNF in 2015, the death and dying movement was only about four years old. It was fascinating to me, a good story idea, and I enjoyed talking to the people I encountered researching it.

What made me want to revisit the topic was The New York Times Modern Love column by Amy Krause Rosenthal, who is dying of ovarian cancer. Her piece, You May Want to Marry My Husband was basically a personal ad for her husband. The way the author acknowledged her impending death had the Interwebs buzzing. Her article ‘went viral’ and I sensed a renewed interest in talking candidly about death and end of life care.

Today, death is a “huge movement all of a sudden,” according to Nina Thompson, Executive Director of the Vermont-based Wake Up to Dying Project. “Four years ago, there were only Death Cafés and advance directive projects.” Now, she says “the movement is a huge story and there is a lot of interest in things such as multiple day public end of life festivals such as those that have taken place in San Francisco and Kentucky as well as London and Sydney.

Sarah Wambold, a Texas-based mortician and writer on the topic of green burials and eco funerals, echoes Thompson when she says, “Since I got into this field 10 ago, when a community didn’t really exist, a very weird thing has happened. I now have a solid community to go to if I don’t have necessary information about something or need support.” She continues, “This is where Death Cafes are helpful, people can be pointed to a community of peers to help them answer their questions about death.”

“I find interesting the different streams within the movement,” says Sarah Chavez, Executive Director of the Order of the Good Death, a community of artists, activists, academics, and funeral industry professionals who want to educate a death-phobic public that death is part of life. “Everyone is going to die,” says Chavez, “and it’s often only when something affects people directly, such as when a loved one dies, that they get involved with it.”

Chavez cites privilege as playing a part in death. She says the vulnerability of various communities, including communities of color, women and poor communities, are often involved in what she terms “bad deaths’, which is death that is out of our control and includes violence such as police brutality, high rates of murder among transwomen, the high murder rate of women in El Salvador and Mexico, and trans people being misgendered and/or having their identity recognized in death. What Chavez terms “good death” is death within our control. “That is when families are able to provide or arrange for home care for a loved one, having the ability to pay for hospice, and the privilege of having loving families and friends surrounding a dying person.”

According to Wake Up to Dying’s Thompson, who has worked as a hospice volunteer, a volunteer chaplain and also holds a certificate from the Zen Center for Contemplative Care, with end of life festivals, “such as the one IDEO, a design firm, sponsored last year, the movement has gone hi-tech. Along with books and TV shows addressing the issue of death and dying, there are apps for care planning, which is very important and critical to doing this work,” says Thompson

Wambold says, “‘Popular’ might be the wrong word, but the common ground of the topic of death is becoming more and more accessible. I think, especially with younger people embracing it in their careers and even as a sort of an identity, creating virtual and physical space to talk about it and also moving the conversation forward, taking it a step further and going deeper, they are getting other people to talk about death, too.”

Another perspective, from peer advocate Jen Padron, who works with people with severe mental illness, is that the decision to die is an honorable one. She believes people with illnesses who are in so much pain they no longer want to live should be able to choose to end their own life. Padron’s is a different spin on the whole death and dying conversation. One that pushes the envelope and puts the issue of death, chosen, into the hands of individuals and not only outside of the medical establishment, but also independent of the funeral industry and even most of the death and dying movement.

Chavez cites Ernest Becker’s 1974 Pulitzer Prize-winning book, Denial of Death and Order of the Good Death founder Caitlin Doughty’s 2014 Smoke Gets in Your Eyes & Other Lessons from the Crematory as watersheds for the death and dying movement. Meanwhile Padron recommends Canadian author Dr. Stephen Jenkinson’s books Orphan Wisdom and Die Wise: A Manifesto for Sanity and Soul as stark, honest discussions of the right to die with dignity.

These two different threads, the right to die with dignity through suicide or euthanasia and the death and dying movement, might seem somewhat removed from each other. But, choosing to die versus open discussions of natural ‘positive death’ and a hastened ‘bad death’ seem, to me at least, informed by the same impulse: to illuminate and alleviate in some manner the dread, fear and despair of death.

Certainly, keeping the conversation about death alive is good for everyone.


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