Prototyping

Mini Caskets

On February 18, I held my first DIY casket workshop session. Participants had 30 minutes to decorate their own miniature caskets. I lasercut recycled cardboard and constructed the caskets using a 3D template I designed.

Pop-up Event

On February 28, I held a pop-up workshop in the NYU Kimmel Center for University Life lobby. Participants could decorate a coloring sheet of either a headstone or an urn.

Collection of color sheets featuring headstone and urn designs

Collection of color sheets featuring headstone and urn designs

Additional Workshops

I held two additional workshops on March 7th and March 28th. Combining elements from both sessions, participants colored their own urns or headstones using markers, crayons, clip art, glitter, and other craft materials.

Further Explorations

Throughout my ideation process, I considered many vehicles to deliver my message, including: a "death spa" where participants are lead through guided meditation sessions; an exploratory installation that invites participants to answer the question "Where will you be when death calls?" (kudos to Merilynne Rush, Lifespan Doulas Association); and, inviting participants to physically create and lay in their own custom deathbed. Other sketches on this page illustrate an AR pin to identify bereaved individuals and share digital memorial pages, and sketches for travel-sized or connectable urns.

“My Good Death” Pinterest Board

As an exercise to contemplate my own death, I created a Pinterest board for my dream funeral. I included inspiration for my funeral dress, suggestions for music, information on how to achieve both organ donation and home funerals, and selected readings. This was surprisingly challenging; I came to the realization that I might not be able to have everything I want, and that being a registered organ and tissue donor might impact or limit my options for funeral proceedings.

Exhibit Space

I envision a gallery space with art, objects, and interactive media to explore. I plan to display objects that have associations with death or the funeral industry throughout history, which might include mourning jewelry (Victorian as well as modern-day designs), urns and burial vessels, devotional candles, death masks, death photography, as well as personal objects that have aided me through my grieving experiences. I am also considering inviting other artists to exhibit their relevant work. I would also love to feature the important work of the end-of-life doulas in the installation, perhaps by displaying video or audio interviews. The exhibit could then be mobilized to be shared in other communities outside of New York City.

Mock-up of physical installation

Next Steps

After prototyping several ideas, and relating my ideation process back to the information gathered in my user interviews, I've decided to pursue a solution through the lens of user experience that helps supports mindfulness and inquiry into death and deathcare preparation.

Through my research, I have discovered that having open, honest conversations about death and involving family and loved ones in the deathcare process can alleviate stressors about the end of life.

My goal with this project is to create an participatory installation to:

  • Prompt individuals to contemplate their own death to reduce fear and uneasiness.

  • Encourage conversations about deathcare preferences with family and friends.

  • Help normalize all reactions to grief - death does not discriminate, and there is no wrong way to grieve.

I also want to explore how ready-made objects perpetuate our funeral traditions and highlight artworks that offer alternative viewpoints about death and grieving rituals.

User Research

Interview with a Doula

End-of-life (EOL) doulas are non-medical professionals who aid individuals at the end of their life, shepherding them into death, advocating on their behalf. EOL doulas are not licensed funeral directors, therefore they cannot perform any deathcare preparation (cleaning, embalmment, transportation). However, they can advise the family how to perform such duties at home and connect them with the proper people to assist in the job. This distinction is important and is directed by state law.

I spoke with three end-of-life doulas: Merilynne Rush, Lifespan Doulas founder and president of the National End-of-Life Doula Alliance (NEDA), Suzanne O’Brien, founder of Doulagivers and vice president of the NEDA, and Chad Lewis, a reiki master, ordained minister, and trained end-of-life doula.

Communities have really necessitated this profession. Merilynne has observed that people are simply dissatisfied with how funerals are conducted; as a response, she also runs a After Care and Green Funeral business in addition to her doula education services, fully injecting herself and her talents into an industry in need of innovation.

Without validation, grief cannot happen. Doula care is based on the client’s values and goals, even if those differ from values cherished by the doula. Chad spoke of his ability to be the person his client needs, providing empathy and understanding to everyone regardless of background or financial status. He and many other doulas strive to work on a healing basis, and take the time to support clients no matter the circumstances. We all deserve someone to help us.

By the time death comes into a person’s life, it’s often too late for preparedness. People panic and are burdened by the difficult decision making and emotional struggle that lies ahead. EOL doulas help families prepare and create a celebration of transition. Consider other important life events­—the birth of a child, a wedding, or even a retirement. All require months of preparation and planning to make each occasion a smooth transition. Why are we not striving to make the most universal and final event of our lives as smooth and comfortable as possible? We cannot control how and when we die, but why not attempt to plan the pieces that we can control? Why not prepare our friends and families by discussing information that could aid or guide them through what might be some of the worst days of their lives?

My conversations with end-of-life doulas have continued. Merilynne has become a frequent contact of mine who has connected me with many other individuals who work within the end-of-life industry. I will continue using my new-found doula community as expert advisors throughout this project.

Survey Results

I reached out to my own community seeking individuals with stories to share. My goal was to gather insight about the grieving behaviors my social media contacts.

Expression of Grief: Interesting results came from questions surrounding how social media has helped express or process the loss. Participants indicated that social media is "warm" or "real", unlike the coldness of a grave or urn. It's also a way to release sadness, notify other people that a death has occurred, and allow others to "hear" their emotion.

Advocacy: Survey participants also use social media as a platform for advocacy, such as to raise awareness on suicide prevention or gun violence.

Continued Bonds: Participants indicated they use private thought and prayer and talking out loud as primary methods to communicate with their departed loved ones. In this sample, social media was surprisingly not as popular of a tool used to communicate directly to the deceased.

Hashtags: I was interested in the reason behind including hashtags on posts, such as #rip, #funeral, or #grief. Survey respondents indicated that using a hashtag makes it easier to connect with others with similar experiences, increase the virality or spread of the post, and to catalog posts of the same topic for reference.

Background

Abstract

Western funeral traditions have separated life from death, creating rigid timelines and rituals that have stigmatized the discussion of death and mourning. The bereaved are utilizing digital tools to express the expectations dictated by society while also serving personal needs to maintain relational continuity with the deceased. This project seeks to use storytelling and digital tools to resurrect the intimacy and personalization of dying, deathcare, and bereavement to encourage reform in the funeral industry and raise awareness on alternative approaches to expressing grief.

Introduction

The business of dying used to be personal. Prior to the Civil War, most Americans died in their homes, surrounded by their families—an end considered to be “the good death” [2]. Funerals transitioned to be held outside the home during the boom of urbanization in the 1920s [1, 2]. Increasingly, people became distanced from the deceased, and by the 1960s, two-thirds of deaths occurred in hospitals, sequestered and removed from the affected family. Popular American funeral practices often provide little to no time with the body before embalmment or cremation, and immediate friends and family are given only a few hours during visitation to grieve alongside their loved one’s remains, often in the eyes of the “public”. This system creates stress and pressure for the bereaved to act within accepted behavioral norms [2, 3]. In addition to societal expectations placed on the bereaved, studies indicate some bereaved individuals lack an understanding of their personal grieving style, which can lead to anxiety and struggling with their loss because they believe their grief is not normal [5].

In American culture, death is no longer open for discussion, and the bereaved lack the necessary tools and resources for processing death and facing their own mortality. With this project, I seek to create a more intimate, customized deathcare experience to support bereaved individuals, identify digital tools we can leverage to aid the bereaved, and ultimately reduce the stigma of discussing death.

Mourning Behavior on the Internet

Research has confirmed that bereaved individuals are using social media and other computer-mediated communication channels to continue relational bonds with the deceased [3, 5, 6, 9]. This includes building memorial websites, writing on message boards, using Facebook to post on the deceased’s walls, as well as sharing photos of grief and emotion on Instagram. Maintaining relational continuity with the deceased, whether by communication or other means, helps the bereaved make sense of their loss and clarify their identity/place in the world without their loved one [3, 5].

Many studies note that the bereaved use social channels to speak directly to the deceased [3, 5, 6, 7, 8, 9]. This is an example of “transcorporeal communication” (TcC), which is defined as communication directed at the deceased. Researchers posit that TcC is a positive way to continue bonds and manage grief [6]. This opposes the traditional Western thought that grief is a finite experience that one can overcome only when the individual cuts bonds with the deceased and seeks to “move on” [5]. This approach to death fails the bereaved because grief does not progress in a linear fashion; individuals might feel fine one moment and then swallowed by emotional unrest in the next. Using digital tools for remediating grief provides a place for grief anytime of the day and creates space for expressing sudden feelings of sorrow and sadness [3].

Limitations of Research

While there is plenty of literature on the subject of mourning in the 21st century, it is not without its limitations of scope. Research has been done to classify the types of posts being shared on social media, but it is still unclear if continuing bonds with the deceased with social media/technology actually helps during bereavement and further stages of grief [3, 9]. Research that has tested the impact of digital grieving remediation tools focused only on individuals who experienced “expected” deaths (elderly, disease), and those who experienced unexpected deaths (death of children, suicides, fatal accidents) were ineligible for the study [7]. Other studies focused their research only on younger audiences between the ages of 18-32, forgoing the grieving experiences of older social media users [3]. Death is a universal experience, and technology affects more than just millennial audiences, so there is opportunity to expand the scope and focus of research surrounding death and digital tools.

Global Death Rituals

There are examples of continuing bonds within non-digital death rituals around the world. Consider Dia de los Muertos, where families create elaborate altars to honor the dead to welcome their spirits back home [2]. Another example is the after-death care practiced by Torajans in Indonesia, where funerals are often delayed for weeks or months and the deceased’s bodies are regularly exhumed, cleaned and redressed [2]. Grief over the loss of a loved one still exists in all these cultures, but death is not the end to a connection or relationship. These are only two examples of global death rituals, but they inspire me to ask, what customs could we adopt to help create the Western response to death more positive?

In Pursuit of a “Better” Death

Despite the constraints that exist among Western mourning rituals, there is evidence that attitudes toward death are shifting. The market for “death doulas”, non-medical professionals who prepare the terminally ill for death, has grown in recent years, suggesting that Americans are in search of a more personalized, end-of-life journey [4]. Death doulas provide companionship and spiritual guidance to those who are dying as well as their families. The doulas not only assist in wrapping up their client’s personal affairs and documents, but may also arrange deathbed vigils, help with funeral arrangements, and provide deathcare such as cleaning and dressing the body after their client has expired.

Cremation has outpaced burials in popularity for the last three consecutive years in the United States, and the National Funeral Directors Association predicts the national cremation rate will be 80% by 2035 [10]. There has also been a rise in requests for “green funerals”, where bodies are not embalmed and buried in biodegradable shrouds directly in the ground, and home funerals, a return to what was once considered normal and expected for deathcare [1]. Home funerals present unique challenges as certain state laws require the involvement of a licensed funeral director to provide death certificates, and some hospitals prohibit releasing the body to the care of an immediate family member. Proponents of reform in the funeral industry help families in conducting home funerals, transporting the body from the hospital and ultimately to its final resting place, and assisting with the cleaning and preparation the body for a home viewing without the use of embalming chemicals [1, 2].

Building off of these examples of reform, this project intends to dispel myths about deathcare in America and raise awareness on alternative ways to honor the dead and continue relational bonds with the deceased. My primary research questions include:

  • How can approaching death differently change our grief experience?

  • What kind of tool or resources do individuals need to understand their grieving style?

  • Does using computer mediated communication channels to continue bonds with the deceased help reconcile grief?

  • Would end-of-life planning and death meditation reduce anxiety about one's mortality?

While I continue to refine my medium, my project will be rooted in storytelling; I want to pull focus onto deathcare rituals and mourning styles by illuminating alternative approaches and creating opportunity for honest dialogue about the isolation and obscurity that shrouds death and grieving. This may be through experimental documentary or an immersive, exploratory experience. One idea I want to pursue is an experimental grieving space that rejects the limitations and stress the funeral industry places on the bereaved at their most vulnerable time. Pulling from the services provided by death doulas and practices of other cultures, this space will provide therapeutic release for individuals experiencing anxiety about death or those processing a recent death of a loved one.

Challenges and Considerations

Culture, heritage and religious beliefs can influence how a person reacts to death, and although these are important factors to consider, they are currently out of scope for this project. I plan to focus on secular matters of the death industry, though I may choose to fold in certain rituals or traditions from other cultures and religions in and outside the United States into my solution.

Due to the sensitive nature of this project, it is also of the utmost importance to take extra care in my research and leverage external expertise on deathcare and grief in order to provide the right tools and advice for my target audience.

References

1. Libby Copeland. 2015. Who Owns the Dead? New Repub. (2015). Retrieved from https://newrepublic.com/article/122130/who-owns-dead

2. Caitlin Doughty. 2017. From Here to Eternity: Traveling the World to Find the Good Death (First Edit ed.). W.W. Norton & Company, New York.

3. Jocelyn M. Degroot. 2012. Maintaining Relational Continuity with the Deceased on Facebook. OMEGA - J. Death Dying 65, 3 (2012), 195–212. DOI:https://doi.org/10.2190/OM.65.3.c

4. Kristen Fischer. 2018. How ‘Death Doulas’ Can Help People at the End of Their Life. Heathline. Retrieved from https://www.healthline.com/health-news/how-death-doulas-can-help-people-at-the-end-of-their-life#1

5. Melissa D. Irwin. 2015. Mourning 2.0-Continuing

Bonds between the Living and the Dead on Facebook. Omega (United States). DOI:https://doi.org/10.1177/0030222815574830

6. Michael J. Egnoto, Joseph M. Sirianni, Christopher R. Ortega, and Michael Stefanone. 2014. Death on the Digital Landscape: A Preliminary Investigation into the Grief Process and Motivations behind Participation in the Online Memoriam. OMEGA - J. Death Dying 69, 3 (2014), 283–304. DOI:https://doi.org/10.2190/OM.69.3.d

7. Sally A. Dominick, A. Blair Irvine, Natasha Beauchamp, John R. Seeley, Susan Nolen-Hoeksema, Kenneth J. Doka, and George A. Bonanno. 2010. An Internet Tool to Normalize Grief. OMEGA - J. Death Dying 60, 1 (2010), 71–87. DOI:https://doi.org/10.2190/OM.60.1.d

8. Tony Walter, Rachid Hourizi, Wendy Moncur, and Stacey Pitsillides. 2012. Does the Internet Change How We Die and Mourn? Overview and Analysis. OMEGA - J. Death Dying 64, 4 (2012), 275–302. DOI:https://doi.org/10.2190/OM.64.4.a

9. Erin Willis and Patrick Ferrucci. 2017. Mourning and Grief on Facebook: An Examination of Motivations for Interacting With the Deceased. Omega (United States) 76 (2), (2017), 122–140. DOI:https://doi.org/10.1177/0030222816688284

10. 2018. Cremation on the Rise: NFDA Predicts the National Cremation Rate Will Climb by a Third Within 20 Years. Natl. Funer. Dir. Assoc. (2018).

Moving On

This project begins on the worst day of my life, the day I told my friend Heather that Eric was dead. We sat on her couch together, and after a few deep breaths I was finally able to move my tongue and create the sounds that would tell her our friend was gone. I will never forget her expression. I can only describe it as absolute, inescapable horror. Our mutual anguish filled the room like a dense fog. She didn't want to sit on the couch anymore. We fled to her bedroom, as if changing rooms had some power to undo the wreckage. I remember feeling mad when her roommate came home and didn’t have the same tortured reaction when we shared our news – but how could she? The grief was ours to bear.

And I did bear it. And I managed to say the same words to many other friends. A phone call in the mall while shopping for a black dress. A text when I could finally look at the words in tiny digital print. It felt like spreading poison. Eventually the news started to move faster than me, which I was thankful for. His funeral was well attended. Afterward, we ate Mexican food.

I feel it's important to note that I'm an empath and a Pisces—overly sensitive at worst, possibly magical, but most simply attuned to my friends' emotions. I felt I had to be the one to support the others. As if there had been a secret vote among my friends that named me everyone else's counselor. Chief of grief. I didn't fight this imaginary role, but I also did not know if I was capable of providing such support to my friends when I was hurting so deeply.

Somehow I emerged from that shadowy place, the underbelly of a friendship lost. I graduated college. I moved to Atlanta, and then to New York City. And still this loss would hit me again, a sudden and overwhelming wave of sadness. Never as all encompassing as when I first saw Heather's pained face, but I still felt chained to his death, drowning in it. One time I threw flowers into the ocean, attempting a new ritual in his memory, or perhaps as a peace offering; maybe if I appeased the beast I would be spared further suffering. Maybe I would learn the secrets of “moving on”.

But now that he’s been gone longer than I even knew him, I no longer believe moving on is in my best interest. Why would I want to forget the joys of our friendship? Why would I want to stop sharing memories? It makes me happy to look at his photos, to read old messages, and even to reread my own emotional posts online. Revisiting his memory in these ways makes me feel connected.

I want to leverage my experience and urge more open, honest conversations about death to help normalize all feelings and reactions. No one should be told to “get over it already!”

I knew I wanted to jump into this space after I learned that Facebook had created a way for its users to designate a "Legacy Contact". Your Legacy Contact receives restricted access to your Facebook account in the event that you die. They are able to change your profile picture, accept new friend request, and post important information about your funeral to your public profile. Legacy Contacts can also download or delete your Facebook data.

This both excited and disturbed me. Do I need a Legacy Contact? Who would I pick? Would my choice impact the friendships I left behind? Is this the ultimate Myspace Top 8 selection?

Outside of my own small universe, observing Facebook's quiet implementation of the Legacy Contact feature made me question what happens (or should happen) to our data when we die. Is it important for my Facebook account to be memorialized? Do I want traces of myself floating around the Internet for eternity? I reflected back on the loss of my friend Eric, and how I devoured his social media in an attempt to absorb everything about him that was publicly accessible. I never before thought about how our grieving and mourning practices have changed as a result of social media. I began my inquiry here.