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 That assumption is outdated and sloppy.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.
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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.