What Death Positive is NOT

Movements are defined by the change they create– what they are.  But our founder Caitlin Doughty wants to dispel myths about the term death positive, further defining the movement by what it is not.

For the first few years I was an advocate for reform in the death industry, I used phrases like “death awareness” and “death acceptance” to describe the movement I was a part of. After all, these were the terms used since the 1970s by scholars and practitioners.

I became “death positive” almost by accident. It started with a tweet, asking why we had movements like body positivity and sex positivity, but we couldn’t use that same umbrella to be forward thinking about our own deaths. People began to respond to the tweet, and the term took off. As an advocate, you go where the enthusiasm and momentum take you, and the term death positivity was challenging and necessary.

I would never tell you to self-identify as death positive. Even if you share all of our principles (laid out here), and support our advocacy, that may not mean you want to align with the movement. That’s fair! But I’ve noticed some misconceptions about the movement’s purpose and values lately, and I want to make sure our stance is clear.

Art by Erin Hancox http://www.erin-hanx.co.uk/epitaphs

Myth One:

The movement is driven by people sharing their hashtags and goth fashion on Instagram.

First of all, if you’re implying that if a person styles themselves in darker, alternative fashion this makes them less serious of an intellectual or advocate, I’m gonna stop you right there. That assumption is outdated and sloppy. Must everyone wear tweed and elbow patches to prove their bonafides as activists? Spoiler: Many of the people wearing too much black for your sensibilities are the same folks on the front lines as hospice nurses, lawyers, archeologists, etc. As our director Sarah Chavez says, this line of thinking is a convenient way to “dismiss and diminish the voices of women in the movement by labeling them ‘goth.’”

The other hypothesis here is that death positivity is #slacktavism, a movement of slacktavism, a movement of art and visuals with no real world implications. Au contraire. Death positivity has always put the needs of the family and the dead body first. That means fighting for real change at the legislative and regulatory levels, as well as in the trenches in the funeral and hospice industries.

Our movement has lobbied for laws like AB-967, legalizing aquamation, the emerging greener death technology, and the End of Life Option Act, allowing terminally ill people to end their lives on their own terms.

Our movement lobbied against bills like the one before the Virginia house that would have made it almost impossible for families to keep their dead loved ones at home for more than 48 hours. This would have violated religious rights as well as the basic rights of the family to choose their own style of funeral.

Opening and running funeral homes that fundamentally change the way the business of death is handled hasn’t been easy (or lucrative, or glamorous), but members of our movement are making it happen all around the world. There are also thousands of people who don’t work in the death industry, but educate and make choices at the local level that re-shape the death industry.

People from all over the world are in constant contact, describing the ways they are engaging their own communities on rituals and empowerment that are meaningful to them (which may look entirely different than what is needed in America– and that’s the point!)

The strength of our movement is in its diversity, and you are welcome no matter how you dress or identify. We have a lot of work to do to change how death is handled and regulated– come with your enthusiasm and skills, and come as you are.

From the campaign for the End of Life Option Act.

Myth Two:

The movement lionizes the ideal of “the good death,” ignoring the many who suffer bad deaths.

For me, this is the concern that needs, and deserves, the most unpacking.

Yes, our organization is called The Order of the Good Death, and we encourage discussion on how to achieve the good death. But a huge part of that discussion is the structural inequality that makes it more difficult for certain groups to obtain the death or funeral they might desire. Not all deaths are created equal. Openly acknowledging this allows us to place our focus on this reality, and work to change it.

A “good death” is personal. A person defines it, a family defines it, a community defines it, a culture defines. My good death may look nothing like your good death. We are not here to define a good death, only support you in achieving yours. If you don’t achieve my good death, or someone else’s good death, this does not mean you have failed. There is no failure, only the timeless human attempt to leave this world on your own terms.

If you’re only exposure to the death positive movement is an article in a major newspaper about a man who took his last breaths as his daughter played acoustic guitar, before his body is carried by his family in a gorgeous wicker casket to a grave dug on the property, you might not always see your own experience reflected. That’s ok, a lot of people feel that way. That’s why there are so many incredible people in our movement writing, advocating, and speaking out about trans rights in death, the devastating mortality rates of black mothers, the strain funerals create for low income families, the impossible hurdles created by dying as an immigrant.

We don’t believe that we should accept bad deaths, especially in our current political climate, as a fixed condition. We should be allowing communities to define what a “good death” means to them, the very real barriers that exist to realizing a good death, and examining and dismantling those barriers. This discovery is a key part of the death positive movement.

19th century Japanese print of last offices being performed on the dead.

Myth Three:

I cannot be afraid to die, or be in the midst of grief, and still be death positive.

If someone tells me they’re not afraid of death, completely free of fear, I’m skeptical. Death is messy and complicated, and your relationship with it is ever-changing. Death positivity isn’t about cultivating a zealous cult like mentality, it’s about meeting people where they are. There is no end goal in being death positive, where if you get enough posi-points you are awarded the golden skull of death acceptance. There is only the process of living as a human with the incredible burden of death.

Louise Hung, who works as a writer with the Order, said this: “what the movement has done for me is allow me to function within, in spite of, and through my monstrous mortality fears. I try to explain this to people all the time. And it’s what shocks people most about this work. That it’s not about being fearless, it’s about finding a way into that fear and through some alchemy, turning it into something valuable in life. Even if that fear never goes away.”

Grief is also an ongoing process. Sarah Chavez, our director, experienced the death of a child several years ago. She says that “just because someone is death positive, doesn’t mean they don’t struggle and aren’t terribly afraid. It’s just that taking responsibility for those fears, picking them apart, and not allowing them to control you, can save you or someone else.”

Again, there is no hierarchy of emotions here. A person can feel in full control of their fears one day, and lose a friend or family member the next. I love using humor to engage death. That doesn’t mean I won’t be crying the next morning. Death contains multitudes, just as humans contain multitudes, just as emotions contain multitudes. Life is a wild journey, and death positive means riding the never ending waves, not climbing a single peak.

*~*~*~*

These myths are baffling to me, as they stand so opposed to the origins (and current work!) being done with death positivity. However, I have faith in the intellectual honesty of the people who believe them. They are not willfully misrepresenting death positivity for their own gain, it is that we are somehow not making our work clear and accessible enough that everyone feels welcome. I hope we change that as the work continues in 2018.

I can see the challenges on the horizon, the challenges that plague every movement attempting to enact genuine good. Flippant press pieces mischaracterizing death positivity, tweets saying death positivity has changed, blogs saying that it’s become too commercial. Can you already see the headlines?: the life-cycle of social movements can be predicted almost to the letter. So why persevere? Because we’ve seen, again and again, the impact this dialogue can have of people’s lives and deaths. I am proud to be a part of this movement, and am eternally grateful to the inspiring and genuine people around me that push me to be a better advocate and person.

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  • Thank you.

  • Anik Gypsy

    This is such a good read and I, in my own way have dealt with some misconceptions about death positivity as well. I haven’t particularly thought about the ones mentioned here. Glad to be made aware and have your insight on them.

  • Lavina of Rome

    I support everything you do except advocate for euthanasia. It seems even otherwise progressive minded folx do not give a shit about disabled people concerns on this issue because they are too scared of becoming like us, the ultimate monsters.

    • Whitney Kerr

      I have family with degenerative disease that inhibits their mobility. I advocate for euthanasia because I want them to have the choice to go out on their own terms. What would be even better is having greater support in LIFE that allows them to thrive, that doesn’t cause further damage, but that is not the system in Canada, or as I understand, in the US.
      I understand the fear that euthanasia could be used against people whose ability is limited, but I sincerely believe that that is something that can be legislated, protected, worked around. The idea of euthanasia is not to determine who gets to live, but to give the individual the ability to choose their own dignified end of life.

    • Matteo Romano

      I like to think that if you take a moment to reflect on how much suffering can some diseases bring, and how nothing can be done about it to improve the patient’s condition, you’d change your opinion pretty quickly

      • brighter

        I think that if you take a moment to reflect how many times a disabled person has been told, “I don’t how you do it; I couldn’t live like that,” you’d understand that the fear that someone else might find our lives not worth living and seek to end them for our own good. We are the only people who can decide if or when our lives are intolerable.

    • I completely disagree. I don’t see it as having to do with being disabled, and I say that as a disabled person. It’s about terminal illness, people who are going to die anyway wanting to die a dignified death. They know that they’re only going to get worse and they don’t want to keep lingering until they’re no longer themselves. As long as the legislation ensures that only terminal patients are able to be euthanized, I don’t see the problem.

  • Lavina of Rome

    I agree the claims of movements becoming too commercial can be so dismissive. It is good that progressive ideas, products etc. have a market at all. And that market just proves we can use the market economic system in a positive way. It will never fully be ethical until it’s fully worker owned but that is just my socialist opinion.

  • Lavina of Rome

    Co-op funeral homes are good. Death pos/alternative funeral co-ops would be even better!

  • Badriya Al-Badi’a

    Death positivity getting “too commercial” would be a good thing, wouldn’t it? Because then it would have penetrated the mainstream and have influenced the entire death care industry. Great piece.

  • Jean de Oliveira Quevedo

    I’ve been following The Order of The Good Death for more than a year, I think, manly because my views of death were changing. Now I can understand how much Death is a struggle among my relatives and in the culture I was born. I don’t want to change people and make them see death as I see, but I want to be there to find new ways to help people in their grief, to accept the departure of their beloved ones and maybe to understand the mystery of death in this life.

    So thankful for your words and your work, as the work of several people un this same way. I’m looking for a way to engage and help as well

  • Larry Meyers

    I’ve learned so much about death but also about life from you Caitlin. Thank you!
    Why not get into the t shirt business and sell death positive t shirts ( up to 5 xl in a quality shirt, thank you very much! Lol)
    Seriously though, wearing one would certainly start a lot of dialogue between people.

  • Lavina of Rome

    My kingdom for the MAiD fanatics to stop taking advantage of the death positive movement.

  • Hayley Prychun Rodgers

    I see death positivey as being very similar to understanding my anxiety and depression. I spent well over a decade of my life not realizing I had anxiety and not understanding my depression. But once I came in to an understanding of it I was better able to deal with it when it came along. I still deal with anxiety, I still have depression, but I can better address my reactions to it when it happens. Same with death positivity. I still have my fears, my grief, my pain, but by better understanding death and grief and fear I am better able to address those concerns and able to be mentally healthier for it

    • Ana

      Exactly my thought. There are many points death positivity and dealing with mental illness (or loss, fear, stress in general) have in common. It helps me too, to deal with things and reflect what’s behind it.

  • Allen T Coffey

    Excellent points all. Thanks.

  • Karen Pielke Santos

    This is just perfect, and reposted on a day that I m getting my own stuff together for a talk and presentation coming up ion the 10th. Excellent timing and excellent wording.