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Digital Afterlife

— Preparing for the Psychological Impact of Virtual Selves and Memories

“Life after death is real in this digital era.”

By Roshni Chandnani

Welcome to the age of the digital afterlife, when the lines between the real and virtual worlds blur, giving rise to the notion of virtual identities and memories. As technology advances, the concept of digital immortality becomes more apparent, compelling us to investigate the psychological consequences of existing beyond our physical life. This article delves into our emotional commitment to our virtual selves, how we cope with grief and loss in the digital domain, and the ethical concerns surrounding digital immortality.

Virtual Immortality: A New Existential Paradigm

Consider a world in which our mind exceeds the confines of our physical body. We can attain virtual immortality in the domain of the digital afterlife, allowing our ideas, memories, and personalities to live on after death. This virtual life is made possible by breakthrough artificial intelligence and virtual reality technologies that digitally replicate our essence. However, the idea of immortality brings with it significant ethical quandaries that call into question our notion of life, death, and what it is to be human.

The Psychological Consequences of Digital Afterlife

The concept of surviving in a digital form raises concerns about the emotional commitment we establish to our virtual identities and memories. We form profound emotional connections with these representations as we devote time and attention to creating our digital identities. When faced with digital loss, such as the deactivation of a virtual self or the erasure of digital memories, we feel a distinct sort of grieving that necessitates the development of new coping strategies.

The Role of Technology in Memory Preservation

Artificial intelligence and virtual reality advancements have enabled the creation of lifelike virtual representations of ourselves as well as the digital preservation of cherished memories. These technologies not only allow us to review our prior experiences, but they also allow future generations to engage with their predecessors’ digital legacies. However, the advantages of digitally storing memories are accompanied by possible downsides, such as the change or manipulation of these memories.

Embracing Digital Estate Planning

The notion of estate planning has expanded beyond physical assets to embrace digital assets in the age of the digital afterlife. Proper digital estate planning entails organizing and managing one’s virtual identities, social media profiles, and digital memories in order to ensure their smooth transfer to trusted others after our death. By taking control of our digital legacy, we can make a significant difference in the lives of those we care about.

Security and Privacy Concerns

As we spend more of ourselves in the digital environment, the need to protect our virtual selves and memories becomes increasingly important. Concerns about privacy and security develop as a result of the possibility of unauthorized access to sensitive data and the danger of identity theft. To prevent exploitation and misuse of our virtual existence, we must strike a balance between sharing our digital lives and preserving our digital identities.

Support Groups and Virtual Therapies

Virtual worlds are becoming significant instruments in therapeutic and emotional support, not merely as a form of entertainment. Virtual treatments give a secure area for people to examine their emotions and tackle unsolved concerns. Furthermore, virtual support groups provide consolation and solace to people who have experienced digital loss by allowing them to connect with others who understand their specific challenges.

Ethical and Legal Considerations

As the notion of a digital afterlife gets traction, it becomes critical to build updated legal frameworks to address concerns such as digital estate planning, virtual self-inheritance, and digital memory ownership. Furthermore, ethical issues necessitate a more in-depth examination of how we handle the digital afterlife responsibly while honoring individuals’ preferences and liberty in both life and death.

Cultural Views on Digital Afterlife

The digital afterlife also calls into question our traditional assumptions about life after death. Various civilizations have different ideas about what happens to the soul once the physical body dies. We are witnessing a development of spiritual practices that integrate traditions with the digital era as technology and spirituality meet. Accepting these cultural ideas offers up new doors for spiritual development and understanding.

The Effect on Social Dynamics and Relationships

As our virtual personas grow more and more ingrained in our lives, they unavoidably have an impact on our relationships and social interactions. Nurturing relationships with our virtual selves, participating in virtual groups, and establishing connections in the digital domain all influence how we interact and relate with people. It also calls into question the sincerity and depth of these connections when contrasted to face-to-face conversations.

Grief and Healing in the Digital Age

“The people you shared those times with, the times you lived through; nothing brings it all back to life like an old mix tape.” It is more effective than genuine brain tissue at storing memories. Every mix tape has a tale to tell. When you put them all together, they may tell the tale of a life.”

Grieving takes on a new level in the domain of the digital afterlife. When faced with the loss of a virtual self or a loved one’s digital memories, individuals suffer a distinct sort of sorrow that necessitates creative ways of healing and closure. Virtual monuments and digital places for memory provide comfort to people looking for ways to respect and love their virtual relationships.

Mindfulness and Digital Detoxification

Living in an era where the digital afterlife is a reality necessitates balancing our physical and virtual selves. Mindfulness and digital cleansing assist us to be present and avoid getting excessively tied to our digital selves. We may maintain a healthy relationship with technology and focus on developing significant real-life experiences by withdrawing from the virtual world on a regular basis.

Identity and Self-Concept Development

The emergence of virtual selves calls into question established ideas about identity and self-concept. Individuals have the option to explore different facets of themselves in the digital afterlife, adopting a more fluid and dynamic sense of who they are. This identity growth opens the door to deeper self-acceptance and an appreciation of human complexity.

Preservation of Educational and Historical Values

The digital afterlife expands educational and historical preservation opportunities. Virtual selves may be used as dynamic and engaging instructional tools, allowing students to connect in a profoundly immersive way with historical personalities and events. Furthermore, digitally archiving historical personalities and their memories guarantees that their contributions to society are never forgotten, establishing a stronger feeling of connection with the past.

Future Planning: Embracing Change

As technology advances, so will the notion of a digital afterlife. In order to prepare for the future, we must welcome change with an open mind, cultivate continual debate, and explore the potential of the digital environment. We can design a future where virtual selves and memories improve our lives without overshadowing the beauty of the actual world if we approach the digital afterlife properly and ethically.

Final Thoughts

The digital afterlife represents a fascinating and difficult frontier of human existence, testing our understanding of identity, relationships, and the essence of life and death. As technology advances, the psychological influence of virtual selves and memories will only become more prominent. However, with mindfulness, empathy, and intentional preparation, we can traverse the digital domain with wisdom and compassion, ensuring that the virtual world supports rather than overpowers the depth of our real-life experiences.

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‘It was as if my father were actually texting me’

— Grief in the age of AI

There has been a surge in the number of people sharing their stories of using ChatGPT to help say goodbye to loved ones.

People are turning to chatbot impersonations of lost loved ones to help them grieve. Will AI help us live after we’re dead?

By Aimee Pearcy

When Sunshine Henle’s mother, Linda, died unexpectedly at the age of 72, Henle, a 42-year-old Floridian, was left with what she describes as a “gaping hole of silence” in her life.

Even though Linda had lived in New York, where she worked as a Sunday school teacher, the pair had kept in constant contact through phone calls and texting. “I always knew she was there, no matter what – if I was upset, or if I just needed to talk. She would always respond,” says Henle.

In November, Linda collapsed in her home and was unable to move. Henle’s brother Sam and her sister-in-law Julie took her to urgent care. The doctors found blood clots in her lungs and gave her anticoagulation medication. At first, “nobody seemed to be very concerned about anything,” says Henle. But over the next couple of days, there was a steep decline in her mother’s condition.

A couple of days later, Linda died.

At the peak of the early buzz surrounding ChatGPT in March, Henle, who works in the artificial intelligence industry, made a spur-of-the-moment decision to feed some of the last phone text messages and Facebook chat messages she had exchanged with her mother into the platform. She asked it to reply in Linda’s voice. It had been a few months since her mother had died, and while Henle had previously connected with a local therapist to help her cope with her grief, she found it disappointing. “It felt very cold and there was no empathy,” she says.

She told the chatbot she was upset because she felt like she had made mistakes and that the hospital had also made mistakes, and that she should have been there to advocate for her mother more. The program responded: “Remember the good times we shared. Remember my love for you and let that be your guide. Grieve, yes. Grief is the price that we pay for love. But don’t let it consume you. Remember to live, to love, to enjoy the beauty of this world for you, for me, for everyone who loves you. And sweetheart, remember to take care of yourself. You are so precious and I want nothing more for you to be happy. I’m very proud of you. I love with all my heart and soul.”

Henle was surprised by how much she felt seen by this technology. She also tried using Bard and Bing AI for the same purpose, but both fell short. ChatGPT was much more convincing. “I felt like it was taking the best parts of my mom and the best parts of psychology and fusing those things together,” she says.

While Henle had initially hoped ChatGPT would give her the chance to converse with what she describes as “a reincarnated version of her mother”, she says has since used it with a different intent. “I think I’m going to use it when I’m doubting myself or some part of our relationship,” she says. “But I will probably not try to converse with it as if I really believe it’s her talking back to me. What I’m getting more out of it is more just wisdom. It’s like a friend bringing me comfort.”

For all the advances in medicine and technology in recent centuries, the finality of death has never been in dispute. But over the past few months, there has been a surge in the number of people sharing their stories of using ChatGPT to help say goodbye to loved ones. They raise serious questions about the rights of the deceased, and what it means to die. Is Henle’s AI mother a version of the real person? Do we have the right to prevent AI from approximating our personalities after we’re gone? If the living feel comforted by the words of an AI bot impersonation – is that person in some way still alive?

Chris Cruz was shocked when his father, Sammy, died. He hadn’t thought it was serious when his father was admitted to hospital: he had been in and out of hospital several times before, having struggled with alcohol addiction for years since leaving their Los Angeles home when Cruz was only two years old. “Throughout my whole life there was this aura of danger about him,” says Cruz. “I thought: he’s been through much worse. This isn’t going to get him.” But after two weeks, Cruz received a call from his stepmother. Sammy’s condition had deteriorated. The hospice was asking her for permission to remove Sammy’s life support. Cruz immediately knew what his father would want: “I said yeah, go ahead and do it.”

It took a few weeks for him to fully process that his father was gone. “I was kind of numb from everything leading up to it. He had always had a turbulent relationship with his father, who would frequently make promises that would never materialize. “He tried to see me maybe once every couple of years. We would make plans and then at the last moment he would say that he has some work that he has to attend to,” says Cruz.

Cruz was inspired by an episode of Black Mirror to try to experiment with ChatGPT, but didn’t have high expectations. “I expected it just to not perform, or to give me some kind of response that was obviously created by a program,” he says. He fed ChatGPT old Facebook conversations with his dad and then typed out his feelings. “Just so you know, I’m really sad that you’re not here with me right now,” he wrote. “I’ve done so much since you’ve passed away and I have this great new job. I wish that you could see what I’m doing right now. I think you’d be proud.”

Cruz’s chatbot responded with a positive message of support and encouragement: “I know you’re going to do great things at your new job and your new position. Just remember to keep working hard and go to work every day.” This generic phrasing may not have sounded like his father, precisely, but still, Cruz felt a mix of relief and grief.

Chris Cruz fed ChatGPT old Facebook conversations with his dad.
Chris Cruz fed ChatGPT old Facebook conversations with his dad.

While Cruz said that ChatGPT helped provide him with a sense of closure, not everyone in his family understood. “I tried to tell my mom, but she just doesn’t understand what ChatGPT is and she refuses to learn, so it wouldn’t have done anything for her,” he says. When he told his friends, they gave him a half laugh. “They were like: ‘Is this an OK thing to do?’ Because I think it’s still an open question.”

Even before ChatGPT, the question of how to grieve, in a digital world, has become increasingly complex. “The dead used to reside in graveyards. Now they ‘live’ on our everyday devices – we keep them in our pockets – where they wait patiently to be conjured into life with the swipe of a finger,” says Debra Bassett, a digital afterlife consultant.

As far back as 2013, Facebook launched memorial profiles for the dead after receiving complaints from users who were receiving reminders of dead friends or relatives through the platform’s suggestions feature. But some platforms are still struggling to figure out how to memorialize the dead. In May, the CEO of Twitter, Elon Musk, was heavily criticized after tweeting that the platform would be “purging accounts that have had no activity at all for several years”. One user tweeted: “My sister died 10 years ago, and her Twitter hasn’t been touched since then. It’s now gone because of Elon Musk’s newest farce of a policy.”

But until recently, those digital memorials have mostly been places for catharsis. A friend or family member might post a comment on a page, expressing loss or grief, but no one responds. With artificial intelligence, the possibility has emerged for a two-way conversation. This burgeoning field, sometimes called “grief tech”, promises services that will make death feel less painful by helping us to stay digitally connected with our loved ones.

This technology is increasing in use across the world. In 2020, South Korea’s Munhwa Broadcasting Corporation released a VR documentary film titled Meeting You, which features a mother, Jang Ji-sung, meeting her deceased seven-year-old daughter, NaYeon, through VR technology. Jang is in floods of tears as she tells her daughter how much she missed her. Later, they share a birthday cake and sing a song together. It feels both moving and manipulative. Occasionally, it flickers back to reality: Jang is standing in a studio surrounded by green screens, wearing a VR headset.

In China, the digital funeral services company Shanghai Fushouyun is beaming life-like avatars of the deceased on large TV screens using technologies such as ChatGPT and Midjourney – a popular AI image generator – to mimic the person’s voice, appearance and memories. The company says this helps their loved ones to relive special memories with them and allows them to say a final goodbye.

In the US, the interactive memory app HereAfter AI promises to help people preserve their most important memories of loved ones by allowing them to record stories about their lives to share interactively after their deaths.

James Vlahos, the co-founder of HereAfter AI, created a precursor to the platform in 2016, soon after his father was diagnosed with stage 4 lung cancer.

“I had done a big oral history recording project with him, and I had gotten this idea that maybe there would be a way to keep his voice and stories and personality and memories around in a different and more interactive way,” says Vlahos. Together, Vlahos and his father recorded his father’s key memories, including his first job out of college, his experience of falling in love and the story of how he became a successful lawyer.

In 2017, Vlahos wrote about this experience in Wired. After it was published, he heard from other people who were facing loss, and who felt inspired by his creation. He decided to scale the app so that others could use it, leading to the creation of HereAfter AI.

The platform lets people turn photographs and recordings into a “life story avatar” that friends, family and future generations will be able to ask questions to. So a son could ask his mother’s avatar about her first job and hear memories that his real mother had recorded in her actual voice while she was still alive. AI is used to interpret the questions asked by users and find the corresponding content recorded by the avatar creator.

HereAfter ensures that the deceased have given permission for the voice to be used in this way before they die, but ethical questions still loom large over two-way interactive digital personas, particularly on platforms like ChatGPT which can impersonate anyone without their consent. Irina Raicu, the Internet Ethics Program director at Santa Clara University, says that it is “very troubling” that AI is being used in this way. “I think there are dignitary rights even after somebody passes away, so it applies to their voices and their images as well. I also feel like this kind of treats the loved ones as kind of a means to an end,” she says. “I think aside from the fact that a lot of people would just be uncomfortable with having their images and videos of themselves used in this way, there’s the potential for chatbots to completely misrepresent what people would’ve said for themselves.”

A number of technology ethicists have raised similar concerns but the psychotherapist and grief consultant Megan Devine questions whether there really is a line that technology should not cross when it comes to helping people to grieve. “Who gets to decide what ‘helping people grieve’ means?” she asks.

“I think we need to look at the outcome in the use of any tool,” she says. “Does that AI image soothe you, make you feel still connected to her, bring you comfort in some way? Then it’s a good use case. Does it make you feel too sad to leave the house, or make you lean too heavily on substances or addictive behaviors? Then it’s not a good use case.”

Raicu says that the benefits to the user shouldn’t come before the rights of the dead. Her concerns are based on real events. Last year, the Israeli AI company AI21 Labs created a model of the late Ruth Bader Ginsburg, a former associate justice of the supreme court. The Washington Post reported that her clerk, Paul Schiff Berman, said that the chatbot had misrepresented her views on a legal issue when he tried asking it a question and that it did a poor job of replicating her unique speaking and writing style.

The experience can also be unpleasant for these seeking solace. Chris Zuger, 40, from Ottawa, Canada, was also curious to find out whether ChatGPT would be able to imitate his late father, Davor, based solely on the speech patterns of a set of provided prompts.

His father had been hospitalised months previously after a fall. Zuger raced to the hospital when he heard the news, but never got the chance to say goodbye.

“Being brought to the room, I knew very well what the news was going to be. My mother, not so much. Seeing her reaction was devastating,” says Zuger.

Davor, who Zuger describes as a “larger than life character”, was the youngest of 14 children. He was born in a small village in Croatia soon after the second world war. “He was the type of guy who wanted to make sure that his kids had the opportunities that he didn’t. He worked two jobs – just to be able to make sure that we had a roof over our heads and a fridge full of food.”

After going to therapy to help process his grief, Zuger decided to feed in some of his father’s text messages and provided ChatGPT with a description of his father’s speech patterns. Then, he sent a message: “Hey, how’s it going?” He did not keep a record of and can’t remember it word for word, but he remembers that it scared him.

Chris Zuger was curious to see if ChatGPT could imitate his late father.
Chris Zuger was curious to see if ChatGPT could imitate his late father.

“It was as close as I could figure as if my father were actually texting me,” he says. But it was also a painful reminder that his father was really gone. “It’s not a text from him on my phone. He’s not across the city at his phone typing to me. It’s just prompt, regurgitating back output from its own language model. It was difficult to see the messages while knowing they were not real.”

If his father had known his son had used ChatGPT to recreate his conversations, says Zuger: “He would have thought it was wild and then asked me how to use it. He would have had fun with it. It probably would have got him off Facebook.”

Bassett, who advises technology companies on their treatment of the deceased, refers to the dead whose digital likenesses are manipulated to perform in ways they may not have while alive as digital zombies. Famous examples include Tupac Shakur and Michael Jackson, who have both been digitally recreated to perform live on stage at concerts years after their deaths.

To prevent people from being recreated with technology against their wishes, Bassett presents the idea of a digital do-not-reanimate (DDNR) order – inspired by the physical do-not-resuscitate (DNR) order, which could be part of a person’s will. Vlahos also emphasizes that enthusiastic consent from the deceased should be a requirement for using this technology. He says that one of the biggest challenges that he faces is that many people don’t realize that they want to use this technology until it’s too late for content to be obtained and the required information provided. “It’s something that people kind of think can be put off for another day,” he says. “And then that day doesn’t come. We get a lot of inquiries from people saying that a relative has already died, and asking if we can do something for them. And the answer is no.”

In the future, however, some element of digital afterlife may prove impossible to avoid, whatever our wishes, in part because the development of many AI products has outpaced the ethical questions that surround them. “For most of us who live in the digital societies of the west, technology is ensuring we will all have a digital afterlife,” says Bassett. Even if our conversations are not being fed into a chatbot, our online activity is likely to remain online for others to see for years to come after we die – whether we like it or not.

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How Gender-Affirming Care Bans Could Impact Hospice Access, Utilization

By Holly Vossel

Hospice providers are growing increasingly concerned about how state laws related to transgender rights may impede access to their services among LGBTQ+ communities.

A rash of states have recently passed legislation to ban the delivery of gender-affirming health care, including Idaho, Indiana, Mississippi and Tennessee, among others.

What’s happening in these states has caused mounting concern around access to quality hospice care for LGBTQ+ individuals, according to Kimberly Acquaviva, social worker and professor at the University of Virginia’s School of Nursing.

“It’s not difficult to imagine that transgender individuals living in those states may be hesitant to seek hospice care,” told Hospice News in an email. “If they receive hospice services in an inpatient facility like a hospice house, will they be addressed by their name and supported in their efforts to dress and groom themselves in a manner that affirms their gender 100% of the time? I’m not confident the answer to either question would be ‘yes.’”

Currently, 19 states in the United States have enacted bans or restrictions on the delivery of transgender health care, according to a recent report from The British Medical Journal (BMJ). Out of these states, 10 have already enacted such laws. Other states have similar laws that will take effect beginning July 1, in October or in January 2024, the BMJ report indicated.

Approximately 560 bills have been introduced thus far in 2023 across 49 states nationwide that include legislation related to transgender rights, according to the most recent data from the Trans Legislation Tracker. Around 83 of these laws have passed, 364 are actively in consideration and 113 were blocked, the data showed.

This compared to 26 bills out of 174 pieces of proposed legislation that passed the prior year, or roughly 15% of those proposed in 2022, the Trans Legislation Tracker reflected.

The volume of legislation that has been mulled or passed limiting transgender rights has been “disheartening” and makes it difficult for hospice providers to improve access and address quality, according to Dr. Noelle Marie Javier, internist at Mount Sinai Health System.

“There are roughly 29 states that do not have anti-discrimination protections in place for the LGBTQIA+ community,” Javier said during a recent American Academy of Hospice and Palliative Medicine webinar. “This number has grown tremendously and exponentially. At the end of the day, the LGBTQIA+ community simply wants to be accepted, supported, respected and treated humanely across the board. We are still dealing with the very same issues that our predecessors have long fought.”

The risks for transgender individuals in violation of current state laws has created health care access barriers for many in the LGBTQ+ community, according to Acquaviva.

“Hospice and palliative care professionals have an obligation to ensure transgender individuals have access to care and are treated with dignity and respect,” Acquaviva said. “If laws at the state level impede access and care delivery that aligns with those obligations, hospice and palliative care professionals need to speak up, speak out, and advocate for changes to the laws.”

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We have the power to reimagine how we die and how we mourn

— We live queer lives—and we can die queer deaths too

By Zena Sharman

At the funeral for Jamie Lee Hamilton, a trans Two-Spirit and Métis Cree activist and sex worker advocate, her community sang and danced to “Respect” and “Sisters Are Doing It for Themselves” during the church service and ate cupcakes decorated with rainbows and red umbrellas. When disabled queer Korean activist and organizer Stacey Park Milbern died, her community organized and livestreamed a 150-car caravan in Oakland and shared tributes under the hashtag #StaceyTaughtUs. Shatzi Weisberger, a Jewish dyke, death educator and activist known to many as the People’s Bubbie, died in 2022 at age 92. She got a head start on her funeral four years earlier by hosting her own FUN-eral, a death-themed party where her friends decorated a biodegradable coffin with glitter and got temporary tattoos while being serenaded by the Brooklyn Women’s Chorus.

What would you picture if I invited you to imagine your own gloriously queer funeral? Maybe it wouldn’t be a funeral at all, but a celebration of life, or a drag show, a brunch, a protest or a rave. Maybe it would be all of these things and more. Would there be sequins and glitter? Dapper suits and splendid hats? Leather and denim? Cozy onesies? No clothes at all? My ideal scenario is a cross between a potluck, a magic ritual and a dance party; I like to imagine my beloved people dressed in whatever they feel most comfortable in. I hope they sing, dance, eat, laugh and cry together, resplendent in their many expressions of queerness as they gather in remembrance and celebration.

Instead of a single event, you might want several gatherings reflecting different facets of your life: a religious service by day, followed by a raucous night at a dungeon, or an intimate ceremony for only your polycule, before a larger memorial open to all of the people who knew and loved you. For some, it might feel good for your chosen and families of origin to mourn together; for others, it will be important to create protected spaces that intentionally keep out your estranged parents or your transphobic aunt. You might choose rituals, traditions or ceremonies that are part of your cultural, spiritual or ancestral practices, or want something completely secular. Maybe you’ll want a virtual memorial so your friends and loved ones from all over can remember you together, or invite people to mourn you privately in whatever ways feel right to them. What we imagine can be as unique as we are.

Our wildest imaginings likely differ from stereotypical depictions of funerals as formal, sombre events where black-clad mourners stand sadly around a heavy wooden coffin. Queerness offers us ways of perceiving and being in the world around us while making and remaking it through a distinctly queer lens. While the conditions of LGBTQ2S+ people’s lives often push us into unwanted proximity with death, we have the power to reimagine how we die and how we mourn. This includes active resistance to the violence and oppression that cuts short too many LGBTQ2S+ people’s lives and an invitation to subvert the beliefs and practices getting in the way of dying queerly, on our own terms. When we queer death, dying and mourning, they become sites of creativity, self-determination, collective care and resisting oppression, creating opportunities to challenge dominant ideas, practices and narratives that limit our ability to express who we are at every stage of our lives, including when we die.

As a death doula and self-identified death nerd, I talk about death a lot, and I’ve noticed that people tend to have one of two instinctive reactions when I bring it up: they recoil, regarding me strangely—or they lean in, wanting to know more. These leaning-in moments feel intimate to me. They often come with stories about a beloved person who died, questions about grief and death and the kinship of knowing it’s safe to talk about something that can feel unsayable. I’ve had these tender exchanges with friends, co-workers and strangers, which shows me how hungry many of us are for spaces where we can talk openly about death. There’s something about these interactions that feels inherently queer to me: holding space for each other while we share a raw or vulnerable truth, or reveal parts of ourselves that we’ve learned to keep hidden away.

Many of us have internalized a tendency to avoid talking about death, an instinct that can be accompanied by feelings of fear, anxiety or denial. When we do think about it, we may keep our thoughts to ourselves because we don’t feel ready to start a conversation about death with the people around us, or because we’ve consistently received messages that talking candidly about death or grief is risky or off-limits. For some of us—especially racialized, Mad and disabled people—talking openly about death or freely expressing grief can lead to pathologization or criminalization.

It can feel overwhelming to confront our mortality or that of the people we love, and many of us haven’t been taught the basics of what the dying process looks like, or what to do when someone dies. Before my oldest child was born, we went to a prenatal class to learn what happens during and after a birth. I wish I’d had a similar opportunity to learn about death a decade ago when I was caring for my mom at the end of her life. “We’re hungry to understand our own death and our own mortality and the death that surrounds us all the time, in a more real way,” Santa Fe, New Mexico-based death educator and host of the Death Curious podcast, Alexandra “Aries” Jo, tells me. They attribute this hunger to the stripping away of death from our everyday, mundane lives.

It hasn’t always been this way. It used to be more common in North America to experience death as a collective, community event. Deaths were more likely to happen at home, where family and community members—often women—cared for their own dead. Some communities have kept these traditions alive as part of their faith or cultural practices, and a growing number of people are accessing home hospice care. But for many of us, the past century has brought with it the increasing medicalization and professionalization of death and death care, transforming it into something that happens behind closed doors in settings such as hospitals or funeral homes. As a result, historian Katherine Arnup explains in a Vanier Institute report on death and dying in Canada, the experience of death has become “very foreign and frightening” for many people.

Yet it feels like an oversimplification to speak about death avoidance or the place of death in our everyday lives without acknowledging that many people and communities live and die in contexts saturated with death and grief, experiences that are tied to systemic oppression. “Loss is a part of life. Bereavement is natural. Grief is natural,” Oakland, California-based author and media justice activist Malkia Devich-Cyril tells me, “but mechanized loss, racialized loss, loss that comes as a result of inequality—that’s not natural. It is unnatural and it is the direct result of groups of people [in power] refusing to lose.” Devich-Cyril, author of a forthcoming book on Black grief and radical loss, points to how these forms of loss produce “an undue burden on those of us who have less power in the world. Grief becomes not only a consequence of disadvantage, but a cause of disadvantage and of disproportionate experiences of grief.”

Stefanie Lyn Kaufman-Mthimkhulu, a Providence, Rhode Island-based disability justice educator and organizer, challenges the idea that the COVID-19 pandemic prompted many people to confront death for the first time. When faced with this sentiment, Kaufman-Mthimkhulu tells me, “So many disabled folks I’m in community with are like, ‘Okay yeah, maybe for you, but not for us.’” Kaufman-Mthimkhulu’s own relationship with death and dying is shaped by being a younger disabled person who has experienced shifts in their body’s capacity and access needs while grappling with medical ableism. It’s also been influenced by their experiences of navigating chronic suicidality. When reckoning with their own mortality, Kaufman-Mthimkhulu draws on the “lessons in impermanence” that come with the “dynamics of living and dying on crip time.”

While I’ve read lots of books and taken several courses to learn more about death, dying and grief, the first people to teach me important lessons about collective care for dying people and how to come together in mourning were leatherdykes a generation older than me who’d lived through the AIDS crisis. It was they who showed me how to organize end-of-life care outside of inadequate and inaccessible state-run systems. They showed me it was possible to stop traffic to sing our beloved dead through the street into their memorial celebration. In these ways, they were part of a lineage of LGBTQ2S+ people who cared for their own dying and dead community members as part of a wider response to the state abandonment and systemic discrimination characteristic of the AIDS crisis in the 1980s and 1990s. Our lineages include experiences of immense loss and collective grief and trauma; they also include organized resistance, collective care and a refusal to abandon each other during and after death.

Today, in my own circles as a queer person, more than one friend has expressed surprise to me at having lived into their thirties or forties, ages they were convinced they’d never live to see. With waves of anti-trans legislation and fascist violence currently sweeping North America, many trans people are fearful of increased violence and risk of harm, prompting some to hold protest signs with the message: “The trans agenda is an average life expectancy.” While supportive of the larger death positive movement, Los Angeles, California-based end-of-life doula, writer and educator Vanessa Carlisle, who is queer and non-binary, tells me they prefer to think of themself as “death accepting” because “I don’t need to be death positive about how much death is happening in my community.” Carlisle, who has deep roots in LGBTQ2S+ and sex worker communities, emphasizes their commitment to fighting for community survival as part of their work in end-of-life care. They want the communities they’re part of “to survive and be happy and well in a world that seems hell bent on destroying us.”

Sarah Chavez, the Los Angeles, California-based executive director of the death education and advocacy non-profit The Order of the Good Death and a founding member of The Collective for Radical Death Studies, affirms that this spirit of resistance and solidarity is integral to death positivity. Chavez, who co-founded the modern death positive movement in 2011, tells me that death positivity is fundamentally “about engaging and talking about death in an honest and open way, without shame.” She emphasizes that we cannot do this “without engaging with the systems and conditions that lead to unacceptable or bad deaths that result from violence, a lack of care, and all forms of systemic oppression.” 

“Queering death is also an opportunity to challenge narrow and limiting understandings of what constitutes a good death.”

How we die is intimately interwoven with how we live, Chavez points out, and “the exact same experiences and barriers that individuals encounter in life typically follow them right into death,” shaping our end-of-life experiences and what happens to our bodies after we die. She cites the example of the added stressors a dying person who is undocumented and their loved ones might face at end of life, like fear of deportation, family separation, language barriers, lack of access to cultural practices and the added costs associated with repatriation of someone’s body to their home or ancestral country. These barriers are systemic: a third of U.S. hospice programs limit access or outright refuse to care for undocumented people at end of life. This is why, for me, queering death demands the transformation of our health and end-of-life care systems and is wholly aligned with an abolitionist politic that includes border abolition.

Queering death is also an opportunity to challenge narrow and limiting understandings of what constitutes a good death. As researchers Cindy L. Cain and Sara McLesky write in an academic article on expanding definitions of the “good death,” qualities often associated with a “good” death—like not being a burden to others or mending familial relationships—“de-individualize the experience of death and disregard diversity within definitions of what is good.” These mainstream understandings, which shape the design of everything from our end-of-life care systems to the laws and policies governing death and dying to the training of hospice and palliative care providers, prioritize “a vision of dying that may not be achievable” or desirable to all patients and function as “a form of social control that seeks to discipline patients and their family members.”

An example of this is the ableism often inherent in stereotypical ideas of a good death. Kaufman-Mthimkhulu tells me they’ve often heard people describe a good death as “someone who’s died silently in their sleep at night, who’s a burden on no one and nothing.” They connect this to the “tremendous amount of fear” many of us internalize about “losing capacity, becoming more interdependent or more reliant on other people, or entering into new kinds of relationship dynamics where power might be shifting.” This is a very real fear for the disabled Canadians being systemically denied the supports they need to live while the government expands their access to medical aid in dying. At the same time, the ability to maintain our independence shouldn’t be the foundation on which we build our ideas of a good death. As in all facets of our lives, death is an opportunity to embrace interdependence as a foundational principle of disability justice. That’s why Kaufman-Mthimkhulu’s idea of a good death is “somebody who is able to move through the process of dying in a way that adheres to their values and beliefs and is met with compassionate, competent, self-determined care.”

In a blog post on what the death positive movement isn’t, Caitlin Doughty, the mortician and advocate who founded The Order of the Good Death, writes that it’s imperative to support communities to define “what a ‘good death’ means to them” and to work alongside each other to dismantle the barriers that get in the way of such deaths. When I think of how I might define what a good death means to me, I’m reminded of the consent practices I’ve learned from being part of sex-positive queer communities for the past twenty years. What feels good in the context of my embodied experiences, my identities, my relationships and my history might not feel good to you, and vice versa. When I contemplate this more broadly in relation to queering death and dying, I return to the themes of creativity, self-determination, collective care and resisting oppression.

To me, queering death is part of a larger liberatory project encompassing our efforts to fight for the survival and thriving of all communities experiencing systemic oppression. As a longtime LGBTQ2S+ health advocate, the more I look at death, the more I think about how we live our lives, what enables our individual and collective flourishing, and what gets in the way, at every stage of our lives. Queering death is about when, where and how we die, the care, support and options we have access to during this process, and what happens to us and our loved ones after our deaths. It’s also about actively working for a world where all LGBTQ2S+ people—especially those who experience the most significant and harmful impacts of systemic oppression, like people who are trans, racialized, Indigenous, disabled, Mad, poor, incarcerated, unhoused and/or undocumented—have what they need to live long, full, joyful lives free from violence and harm. Queering death is not about hastening the inevitable; it’s about fighting for us all to live and die in ways that respect, honour and celebrate every aspect of who we are.

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Paul Simon Confronts Death, Profoundly, on ‘Seven Psalms’

— The 81-year-old songwriter ruminates on mortality, faith and meaning in an album that could be a farewell.

On a new album, Paul Simon is thinking about time, love, culture, family, music, eternity and God, striving to balance skepticism and something like faith.

By Jon Pareles

What do songwriters do when they feel death approaching? As time runs out, some choose to spend it by determinedly creating music to outlive them.

“Seven Psalms” sounds like a last testament from the 81-year-old Paul Simon. It’s an album akin to David Bowie’s “Blackstar” and Leonard Cohen’s “You Want It Darker,” which those songwriters made as mortality loomed; they each died days after the albums were released.

Their generation of singer-songwriters has dedicated itself to chronicling their entire lives, biographically and metaphorically, from youth through last words. “Blackstar” was turbulent and exploratory; “You Want It Darker” was stoically bleak. “Seven Psalms” stays true to Simon’s own instincts: observant, elliptical, perpetually questioning and quietly encompassing.

The album is constructed as a nearly unbroken 33-minute suite, nominally divided into seven songs that circle back to recurring refrains. It has places of lingering contemplation and it has sudden, startling changes; its informality is exactingly planned.

Simon begins the album in his most casual tone. Over calmly precise and rhythmically flexible guitar picking, he sings, “I’ve been thinking about the great migration.”

Almost immediately, it becomes clear that the migration is from life to death, a transition the singer is preparing to make himself. He’s thinking about time, love, culture, family, music, eternity and God, striving to balance skepticism and something like faith. “I have my reasons to doubt/A white light eases the pain,” Simon sings in “Your Forgiveness.” “Two billion heartbeats and out/Or does it all begin again?”

Simon’s songwriting has never been particularly religious. Over the years, he has drawn on gospel music for songs like “Bridge Over Troubled Water” and “Loves Me Like a Rock,” which bring religious imagery to secular relationships, and his 2011 album, “So Beautiful or So What,” had touches of Christian imagery — but also imagined “The Afterlife” as one last bureaucracy, where arrivals have to “Fill out a form first/And then you wait in a line.”

“Seven Psalms” is more humble and awe-struck. Its refrains return to, and work variations on, the album’s opening song, “The Lord.” As in the psalms of the Bible — which, as Simon notes in “Sacred Harp,” were songs — Simon portrays the Lord in sweeping ways: wondrous and terrifying, both protector and destroyer, sometimes benign and sometimes wrathful. The Lord, Simon sings, is “a meal for the poorest, a welcome door to the stranger.” Then he turns to naming 21st-century perils: “The Covid virus is the Lord/The Lord is the ocean rising.”

Much of the music sounds like solitary ruminations: Simon communing with his guitar, which has been the subtly virtuosic underpinning of most of his lifetime of songs. As his fingers sketch patterns, he latches onto melody phrases and then lets them go, teasing at pop structures but soon dissolving them. And around him, at any moment, sounds can float out of the background: additional supportive guitars, the eerie microtonal bell tones of Harry Partch’s cloud-chamber bowls, the jaunty huffing of a bass harmonica and, in the album’s final moments, the voice of his wife, Edie Brickell.

In the course of the album, Simon sings about personal distress and societal tensions. In “Love Is Like a Braid,” a song of gratitude and vulnerability, he sings, “I lived a life of pleasant sorrows until the real deal came/Broke me like a twig in a winter gale.” In “Trail of Volcanoes,” he juxtaposes youthful exploits with adult realities: “The pity is the damage that’s done/Leaves so little for amends”

Meanwhile, Simon’s tartly aphoristic side reappears in “My Professional Opinion,” a swipe at social media context collapse set to a country-blues shuffle. “All rise to the occasion/Or all sink into despair,” he sings. “In my professional opinion/We’re better off not going there.”

He ends the album — possibly his last — with a song called “Wait.” He protests, “My hand’s steady/My mind is still clear.” Brickell’s voice arrives to tell him, “Life is a meteor” and “Heaven is beautiful/It’s almost like home.” At the end, he harmonizes with her on one word, extended into five musical syllables: “Amen.” It sounds like he’s accepting the inevitable.

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Death Cafes

— You’re Going Where?


By Marilyn Mendoza

The Death Positive Movement

In Victorian England, death was in the forefront of society. People would begin talking and planning for their death when they were young. By the time someone died, there was no doubt about what was wanted and how it was to be carried out. Women would even make their shrouds to be included in their wedding dowry.

Since that time, we have made a complete reversal in how we deal with death, from being the center of one’s life to rarely being discussed. However, continuing to ignore it will not make it go away. Death is coming for all of us.

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In 2011, the Death Positive Movement began. Since then, it has been providing opportunities for people to talk more openly about death and dying. Its goal is to decrease the stigma of death. However, many people are still unaware of the movement and the activities associated with it. Perhaps one of the better-known activities associated with the movement is the Death Cafe.

Quite simply, Death Cafes are places that you can go, for free, to feel comfortable and safe talking about death. Actually, you do not even have to talk if you don’t want to. There is no planned agenda, and anyone can bring up a topic to discuss. It is free. Cake and tea are always served and sometimes other beverages. The Cafes are currently found in at least 80 different countries. Sometimes the group may be run by a mental health professional, though most of the time it is someone who has no training in groups or mental health.

While Death Cafes are not meant to be support or therapy groups, I have generally found that people who attend these meetings are warm and supportive of each other, sharing a common bond in accepting mortality. Other activities associated with the movement are Death with Dinner and Coffin Clubs. Often Death with Dinner consists of smaller groups who might get together at someone’s home for dinner and discussion about death.

Coffin Clubs have been popular in New Zealand, England and Ireland, although I am unaware of Coffin Clubs in the United States. People get together to build, decorate and try out their coffins. Members enjoy being with each other. It is a safe place to talk about their lives and future death. An additional benefit to the Coffin Club is the significant amount of money saved by building their own coffins.

Death Cafes and Therapy

Of the three activities, my clients and I have experienced the Death Cafe. I attended the first Death Cafe held in New Orleans and was amazed by the number of people who came. It was a mixed group, with some being from the medical and mental health fields, while most of the others were from the community. They had heard about the Death Cafe and came to see what it was all about. It was a unique experience.

You don’t usually find people sitting around talking about death. However, it was very encouraging. For over an hour, we introduced ourselves and talked about what had brought us to the meeting. Some came due to curiosity, some due to the loss of a loved one, and some with their own terminal condition. All were interested in discussing and learning more about death. It is good to be able to see that others have the same concerns and fears about dying as we do.

During the meeting, I began to reflect on the people in my practice who might benefit from this experience, and then I thought about Sarah. Sarah was a 74-year-old woman who came into therapy to talk about her declining health. She had been diagnosed with congestive heart failure, which was worsening. She felt that she would not be alive for much longer and wanted to talk about dying.

The problem was that her family did not want to accept her impending death or talk about it — an all-too-common experience. I talked with Sarah about considering attending a Death Cafe meeting. It didn’t take much to convince her.

The following week when she returned, she talked about her experience and how it was like a “breath of fresh air” for her. “People were so welcoming and open,” she said. “It was a relief to be able to talk about dying and not feel guilty. I’m glad I went. I feel like I learned a lot.”

The meeting seemed to empower Sarah. She decided that she wasn’t going to wait around for her family and that she just needed to take charge of all the planning herself so she could have everything just the way she wanted. She began to plan her funeral, the music, and the dress she wanted to be buried in. She picked out her gravesite and even designed her own headstone.

I have also encouraged trainees who were interested in palliative care to have the Death Cafe experience. It has been a great learning tool and helps them to be more comfortable when talking about death with others.

Tulane Medical school has also been in the forefront of utilizing the Death Cafe as a way to address burnout in medical staff who work in high death areas such as the ICU. The meeting I attended included medical staff who worked together on a surgical unit. A child had died in surgery, and the doctor who had performed the surgery was sharing the impact on him as well as the other staff present.

It was very touching to hear him. His pain was almost palpable. Perhaps most striking to me was the atmosphere of the group that allowed him to be open with his feelings of sadness and to cry at the loss of his patient. There are perhaps many different providers who work with the dying that could benefit from debriefing Death Cafes.

Of course, not everyone is enthusiastic about learning more about death. In my practice, I have found that women tend to be more open to the idea than men. There was one situation that has stayed with me for years that demonstrates the power that the fear of death can have: Patricia was brought to therapy by her husband at her doctor’s request. She had been quite ill and recently diagnosed with cancer. Her husband brought her in because the doctor said she was depressed.

It was hard to determine if she was more afraid of her husband, or of dying. One day, she told her husband what we had been talking about. He flew into a rage and would not let her return. It is this fear that speaks to the need for Death Cafes to normalize the process and free people up to talk about what is ahead for all of us.

The Death Cafe has a saying: “talking about babies won’t make you pregnant and talking about death won’t make you die.”

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‘I see the world through corpse-colored glasses,’ says popular mortician, author and YouTuber Caitlin Doughty

— Caitlin Doughty will be in Fargo to speak at Thursday’s Humanities North Dakota event, A Brave Conversation About Death.

Author and YouTuber Caitlin Doughty incorporates humor and history to discuss death and the funeral business.

By John Lamb

When she was eight years old, Caitlin Doughty saw a child fall to its death at a shopping mall and was immediately ushered away and encouraged not to talk or think about it.

“That was a pretty defining moment of my life. I was scared of death,” Doughty says. “We didn’t have the vocabulary for it, the safe area to hold fears. I just had to deal with it.”

041823.F.FF.CAITLINDOUGHTY_2
Caitlin Doughty’s first book, “Smoke Gets in Your Eyes and Other Lessons from the Crematory”.

She may have not had the means to express her questions and concerns as an 8 year-old, but 30 years later she’s written three books and created a popular YouTube series all about death.

The mortician, author and YouTuber is the guest of Humanities North Dakota for a sold-out event Thursday night at the Avalon Event Center.

So what is, as the event is called, a “Brave Conversation About Death”? Doughty says she will come warm up the crowd, plant some food for thought on the topic, then leave the stage to let the audience talk among itself about death. She’ll then return to the stage and follow-up with a discussion.

“If you grew up in America, we don’t have death literacy, a safe way to talk about death. We were never taught how to do it,” she says, though she adds that over the last decade, things have gotten better.

“With the internet, people are not comfortable not knowing something,” she says.

In the mid-2000s she wanted to learn more about the funeral industry and got a job in a crematory then attended school for a mortuary science program and graduated as a certified mortician.

Her real work had just begun. Doughty saw things in the funeral industry that could be changed and started The Order of the Good Death, which advocates for reforming attitudes and practices around death, funerals and mourning.

In 2012 she started the YouTube series “Ask a Mortician,” which features her addressing questions people may have about death and funerals in an often entertaining way. The show quickly attracted a following among the general public and now has 1.96 million subscribers, thanks to episodes like “Morbid Minute: Coffins vs. Caskets” and “ Preparing Severely Decomposed Bodies for a Viewing”.

Between the YouTube videos and her books, “Smoke Gets in Your Eyes & Other Lessons from the Crematory,” “From Here to Eternity: Traveling the World to Find the Good Death” and “Will My Cat Eat My Eyeballs? Big Questions from Tiny Mortals About Death” Doughty has developed a following. She’s heard of people dressing like her for Halloween (“The hair is low hanging fruit,” she says, referring to her signature dark bangs) and even had a drag queen parody her in a video.

“I think I have such a specific advocacy that there’s not a cult of personality,” she says, adding that followers who share her stance on funeral reform are called “Deathlings”.

Still, the segments drew criticism from the old guard in the funeral industry.

“There was discomfort and anger that I’m doing it in this medium and talking about a different future for the industry,” Doughty says. “Most funeral directors believe that the way they provide for the families is the right way.”

But Doughty says changing some practices can help us have a better experience with death and mourning. In particular, she feels the family should have the option to be more involved, mostly by spending time with the deceased.

“For so long we’ve been trained to call the funeral home as soon as someone dies so they can take the body away,” Doughty says. “In reality, death is not an emergency. Your mom is dead now and will still be dead in two days. You’re allowed to take the time you need to process. Being present with a dead body is the simplest and scariest thing to do, but without fail people have an incredible experience.”

She adds that with the exception of an extremely rare case like someone dying of Ebola, “it’s perfectly safe to be around the dead.”

People may wonder what those in the funeral industry were like as kids and Doughty says she wasn’t so different from others her age, though she was a bit of a goth kid.

“A lot of funeral directors held funerals for their pets. That wasn’t me. I wasn’t morbid. I wasn’t Wednesday Adams,” she says. “I was always interested in death as a cultural thing. I see the world through corpse-colored glasses.”

So what does someone who spends all of their time talking about death have planned for her own funeral? While she’s made some plans, she’s still undecided about what will happen to her body. For years she’d wanted a simple, green, or natural burial, to be wrapped in a sheet and buried in a hole in the ground to allow for easier decomposition. After learning more about the practice of human composting, she’s becoming more interested in that.

“I definitely want people to spend time with my dead body in my own house,” she says. “Put flowers on my body, have something to eat or drink and just hang out with me.”

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