Nov 12, 2024 | Advocacy, Appropriations, Federal Government, Grief
With Evermore’s support and encouragement, Congress passed the Consolidated Appropriations Act of 2023, directing the U.S. Department of Health and Human Services to produce a report on the need for bereavement and grief services in the United States. Last week, just prior to the national election, the report was released to the public. To our knowledge, it is the first report by the U.S. and a direct result of Evermore’s leadership.
The report examined the scope of need for quality grief services, assessed the demand for such services, and provided a holistic evaluation of affected populations. This included identifying necessary interventions for specific groups, such as healthcare workers and other impacted demographics, and assessing the prevalence of conditions like post-traumatic stress disorder (PTSD) and complicated grief (CG). Additionally, the role of hospice programs in offering community bereavement support was underscored as essential to addressing these growing needs.
Findings from an environmental scan and interviews with experts, including researchers, advocates, and clinicians, reveal that grief responses are complex and vary widely. Approximately 10% of bereaved adults develop prolonged grief disorder (PGD) or CG, though contributors suggest these figures might be underestimated due to diagnostic complexities and overlapping mental health issues. PGD frequently co-occurs with PTSD, depression, and substance use disorder, posing challenges for treatment. Children, caregivers, veterans, and individuals who experience traumatic loss are among those most affected by PGD. Effective support services span from traditional therapy to music therapy, emphasizing trauma-informed care, while schools and mental health settings serve as critical sites for identifying those in need.
The report highlights hospice as a crucial service in promoting healthy bereavement by offering anticipatory support and post-loss coping mechanisms. However, concerns about access inequities and the shift toward for-profit hospice models were noted. Systemic factors like race and socioeconomic status also influence access to bereavement services, with disparities particularly prominent for communities of color. Although the COVID-19 pandemic has increased awareness around grief and reduced stigma, it has also amplified service demands, especially in underserved communities. Many contributors support a more comprehensive approach to grief that goes beyond medicalization, advocating for a nuanced understanding of grief’s social and cultural dimensions.
The report suggests that current bereavement services are fragmented and inequitable, with a need for a more comprehensive, less medicalized approach to grief support. Recommendations include enhancing healthcare systems, improving access to services, and addressing the inequities in bereavement support.
Resources:
Read the full Report to Congress: An Overview of Bereavement and Grief Services in the United States here.
Oct 27, 2024 | Family, Grief
By Nora Biette-Timons
In November 2021, Viennia Lopes Booth went to visit her dad for the first time in a couple of months. When he opened the door, she was “shocked,” she shared during a death care conference in September. “I hadn’t seen him in two months, and he looked like a dead man walking.”
He told her that it was merely his sciatica flaring up and that it was “getting better,” but that was clearly not the case. After two days of Lopes Booth begging him to seek medical attention, he only relented when she gave him the option of calling an ambulance or family taking him to get care.
What followed is a story far too many people are familiar with. Lopes Booth’s father, Charles “Old Briar” Lopes, was Black and Wampanoag, had a “deep mistrust and fear of the medical institution,” she said. “With a lifetime of negative experiences, coupled with the long, ugly history of violence, disrespect, and utter disregard of Black and brown bodies, who could really blame him?”
Doctors confirmed her worst fears: end-stage prostate cancer. There were no remaining treatment options, and he was given two to 14 days to live. He ended up living 97 days and, thanks to Lopes Booth following through on his wishes, he spent them at home, with her as his caretaker.
“As he lay clinging to life,” she said, “he had an unusual request: He asked me to have a home wake.” Aside from his distrust of institutions, he “didn’t want to be alone in a strange building with strange people, living or non-living.” His own agency had always been important to him throughout his life, “and this was really no exception.”
Lopes Booth—who trained as an herbalist specializing in women’s health—recounted her experience at the Building Bridges in the Deathcare Landscape conference in Seattle. Appearing on a panel addressing Diversity, Equity, and Inclusion (DEI) in death care, she and other experts discussed how the industry often ignores specific cultural practices and death rituals; and may exert pressure on loved ones to forgo traditional practices because they are considered unhygienic (or even just unusual); and can often have a predatory effect on people’s finances during one of the hardest moments of their lives.
She shared her particular story to detail the institutional hurdles she ran into while caring for her father at home in his final weeks and creating the at-home memorial he asked for, but also to make clear that though these are both deviations from the norm, they are possible—and can (even should) become more common.
After he died, Lopes Booth’s family kept her dad’s body at home for a four-day vigil, celebrating his life. Throughout, they “kept a ceremonial fire going for the four days from his passing until we carried him away for cremation, and folks helped tend to the fire as a way to show love and honor my dad.” During the vigil, the door to his southeastern Massachusetts home was open: Friends, family, and even the hospice social worker visited whenever they wanted, some multiple times.” “We sang to him; read to him; played his favorite card game, Spades, in his room with him; played music for him; spent time in silence with him; shared food in honor of him. He was never alone,” she said.
“We honored him, his body, and his life and helped his spirit fully leave his body in a gentle way surrounded by family and friends in the home he loved,” she said. “He would be happy with his sendoff.”
When it came time to bury his remains, they honored him with “ritual and love in a sunrise ceremony,” laying “his shrouded body on the land he held a deep connection with near his beloved garden.” On the way to cremate him, Lopes Booth played a song in their native language that translates to, “Creator, help us. Help us to grieve, help us to heal, strengthen us.” A few days later, they held a small family funeral where they “laid him to rest in power on tribal land next to his brother and father,” marking his grave with a stone they found on his favorite beach.
“Our elders say that ceremonies are the way we remember to remember,” Lopes Booth said, quoting Braiding Sweetgrass author Robin Wall Kimmer, who is a member of the Potawatomi Nation. “Ceremony is a vehicle for belonging to a family, to a people, and to the land. Through this initiation, this last request, I was able to experience the power of ceremonial remembering at every turn. I felt the whisperings of my ancestors guiding this process.
“Having the space and time to be with us in this very intimate way helped me to feel deeply connected to another way, my ancestral way…reconnecting in this liminal space to all that has been taken from our family and my people,” she continued. “My kin were beaten, shamed, killed [and] conventional death care feels like another form of forced assimilation.”
Demonstrating that a different way was possible had profound effects on her family. After her father’s funeral, Lopes Booth said her in-laws “completely changed their death plan,” and her “cousin, who’s a tribal medicine man, asked me how he could do this for himself.”
She recalled seeing her nephews attending her dad’s services and realized how valuable it would be to have your first experience in a death situation be so respectful and culturally specific, while also normalizing a different method of post-death care.
“To know that that option exists is really important,” she said. She later elaborated: “When the gates were open, my family and our community were able to honor my dad in a way that was true to him, and that was true to us…that was a powerful experience.”
Lopes Booth describes the experience of “caring for my dad at the end of his life and after death” as “one of my greatest life achievements. In some ways, I think this was my dad’s last gift for me, to allow me to wrap him in some much love and to have this space to understand the fullness of his being.”
But getting to this beautiful, rewarding point “felt like I had climbed Mount Everest. But the thing is, I didn’t need to feel like I climbed Mount Everest.”
She detailed the “serious gatekeeping” she encountered “along every part of this journey.” What was hardest about the process was the “resistance from the people necessary to get them on board. The knee-jerk reaction from people was like, what? No, no, no.” (The easiest part? Taking care of her dad’s body, Lopes Booth said. “We used techni ice,” and it “worked beautifully over the four days.”)
“The town clerk was the first person I had to visit to figure out how to go about doing this. And it took me several visits to her”—plus mentioning her father’s status as a Vietnam veteran—before “she finally [softened] to the idea of being willing to help me,” Lopes Booth said.
“Funeral directors…resorted to scare tactics. One said this could turn into a really bad science experiment, and another said, I can’t really sell you a cremation container because what happens if your dad’s body rolls out of it”—which added “a little flare to the scare,” she said, a bit tongue-in-cheek. She had to prove to various professionals repeatedly that she was acting on her dad’s behalf—and could plan this unconventional death way so safely and responsibly. “Overwhelmingly, the consistent message was, this is not how we do things, and what you’re trying to do is literally impossible.”
“My father and our people have suffered extraordinary levels of institutional oppression. He wanted to be free of institutions in death. He wanted agency. He wanted family. And ritual is an art of remembering, to remember, and my journey with my dad and this family-led post-death care really awakened a ceremonial reconnection to my ancestors.”
Lopes Booth called on “folks in the death care industry to consider the ways in which” contemporary institutional gatekeeping operates akin to historic oppression, and “to realize that we are forcing people into death ways that lack personalized meaning and are driven by power, consumerism, and the status quo.”
She ended her speech with a hopeful challenge to conference attendees: “How can we be more conscious of that gatekeeper mentality, and how can we stop perpetuating it, to invite access, empowerment, and agency and to really build bridges to our people, to our land, and to our cultures?”
Sep 13, 2024 | Community, Family, Grief
By Nora Biette-Timons
Earlier this summer, throughout the month of June, we celebrated the joy of queerness, the joy of embracing one’s authentic self and sexuality. We hold this love and delight in our hearts throughout the year—but we also remember that public Pride celebrations did not come easily: Queer existence has a painful history, and the fights for equality and recognition are far from over.
Throughout these fights, queer widows and widowers have told stories of the saddest moments of their Flives: They were even more helpless than straight people facing the loss of a spouse, because as their partners were dying, they had no legal rights to make decisions. They were helpless in the face of death, as we all are, but also in the face of discrimination, which was legal until all too recently.
Though queer acceptance has come a long way in the past 25 years, and the scale of these problems has lessened — sometimes significantly — after the Supreme Court upheld Obergefell in 2015, they do still exist. Social and cultural attitudes remain prejudiced, and, as a result, many bereaved queer people experience disenfranchised grief; “grief that is not seen as legitimate or meaningful by society or others in their social network,” says Dr. Kailey Roberts, a psychology professor whose research specializes in bereavement and palliative care. This can show up as dead partners being referred to as “friends”; families leaving same-sex partners out of the mourning process because they disapprove; or workplaces not recognizing these kinship ties and refusing to grant time off.
This lack of being seen by and understood exacerbates loss for bereaved LGBTQIA+ individuals, Roberts says. As a man named George Seabold wrote in Gay Widowers: Life After Death of a Partner, an anthology published in 1997 specifically to help bereaved gay men, his grief over the death of his partner was further isolating because, at the time, he was not publicly out.
For many reasons — from historic marginalization to community bonds — the concept of “chosen family” is particularly strong for LGBTQ+ people. As Roberts puts it, “‘family’ includes not only biologically or legally related kin, but also [people] who are highly meaningfully connected and closely involved in each other’s lives but not bio-legally related.” An essay in ColorBloq, an online journal by and for queer and trans people of color, notes that “chosen family” is especially salient for LGBTQ+ people of color, who face disproportionate rates of social and economic isolation. Chosen family, “built on kinship with intentional demonstrations of love, shared history, material and emotional assistance, and enduring solidarity. [It] encompasses a network of social support, intimacy and identity.” These kin relations “are at the center of the activities that sustain a family built on social and cultural connections rather than legal and biological.”
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Older generations, in particular, carry the scars of the AIDS crisis in the 1980s, which was for far too long largely ignored by governments, public health officials, and society writ broadly. While those memories do not exist for younger generations of queer folks, the horror of them has not disappeared. “The collective trauma of the HIV epidemic has been passed down through generations, but we rarely contend with it as a community,” researcher Alexander McClelland writes in Between Certain Death and Possible Future, a collection of essays analyzing the legacy — and current reality — of HIV/AIDS. “The grief and deaths of thousands of gay men, trans women, injection drug users, sex workers, immigrants, people of color, and other marginalized people were not taken seriously then, so how can the grief and fears of subsequent generations be taken seriously now?”
The painful history of HIV/AIDS echoes today as many older queer adults who lost partners and chosen families during the crisis in the 1980s and 1990s enter their later years. The “ongoing societal stigma associated with LGBTQIA+ identities” and the “lack of tailored and affirming resources can contribute to suffering and loss” in this community, Roberts says.
This missing support has real, tangible health effects. Beyond disenfranchised grief, elderly queer patients, on average, face more health issues (mental, physical, and cognitive) and, on top of that, encounter barriers in healthcare settings that sometimes can lead to them avoiding treatment, thus hastening or worsening end-of-life outcomes. An analysis published earlier this year titled “Health disparities among LGBTQ+ older adults: challenges and resources, a systematic review” reported that, in comparison to their heterosexual counterparts, older lesbians and bisexual women have “heightened rates of overweight and cardiovascular disease” and gay and bisexual men have higher rates of angina, cancer, and diabetes.
This report said that evidence overwhelmingly suggests that these health issues are caused by the stigma (including internalized stigma) and isolation older queer people faced throughout their lives—and still face today. These problems can be worsened when they seek healthcare, where heterosexuality is the presumed norm, and doctors are often untrained on the specific issues LGBTQ+ elders face.
Some lawmakers have recognized this reality, and their efforts to solve it are ongoing. Sen. Michael Bennet co-sponsored legislation in 2017 to establish a National Resource Center on LGBT Aging, and in 2021, asked the Department of Health and Human Services for a briefing on the issues facing this population and urged the agency’s leaders to issue culturally competent guidance “to support LGBT older Americans receiving palliative and hospice care.”
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The lack of full social acceptance and recognition also makes the grieving process more difficult, and forces the bereaved to grieve in private or to mask the full extent of their grief.
But when the death of a queer person is able to be marked and mourned in public, the way the deceased would want, it is something to be celebrated. The funeral for Cecilia Gentili — a trans woman, actress who appeared on “Pose,” sex worker advocate, and stalwart of New York City’s LGBTQ community — was a perfect example of the progress that’s been made, and the hurdles queer folks still face. Gentili died in February at age 52, and her funeral drew more than 1,000 mourners to St. Paul’s Cathedral, the same cathedral where gay activists once staged protests against the Catholic Church. While planning the service, her family kept her full identity “under wraps,” according to the New York Times, out of concern that the archdiocese would object to holding a funeral for a trans woman (and the archdiocese did indeed condemn the funeral after the fact). But the memorial itself celebrated Gentili’s true self, out in the open: Her family and chosen family attended — many in outfits described as more likely to be found at a fashion show than a funeral and it functioned, as the Times put it, as “a celebration of her life and an exuberant piece of political theater.”
May 14, 2024 | Advocacy, Community, Grief
Advancing Bereavement Leave for All Students in Higher Education
Each year, over 4 million students in higher education
are socially and academically impacted by bereavement
Losing a loved one at any juncture can alter the course of a life; navigating grief is a fraught and difficult process in the best of times. But for students in higher education—from trade schools to elite universities—it can be particularly overwhelming and cause them to abandon their studies.
According to some experts, nearly a third of college students who lose a friend or loved one while enrolled in higher education will fail to obtain their degree.
Douglas with his family.
Beyond the emotional ramifications, failing to get a degree has lifelong effects, and many grief experts argue that institutions should offer students bereavement leave and grief support. Sydney Rains and Red Douglas were two students who would have benefited from bereavement leave and grief support: Both lost their fathers when they were undergraduates, and now they are working to ensure future generations of students receive the critical support they did not.
Collaborating with Evermore and members from public and private institutions from across the country, Rains and Douglas are leading Evermore’s Higher Education Leave Policy (HELP) campaign. Their goal is to bring awareness that students, from trade schools to universities, are being severely impacted by grief and more can be done to support them.
Rains with her father.
Rains was finishing up her junior year at Gonzaga University when her father died, and she struggled to complete assignments when she returned to school. Amidst her grief, she successfully led a student-specific bereavement policy campaign at Gonzaga, and she’s now working with the Evermore HELP campaign to advise colleges interested in implementing similar plans at their own institutions.
The HELP campaign was developed after Dr. Heather Servaty-Seib, who played a critical role in establishing the Grief Absence Policy for Students (GAPS) for students at Purdue University in 2011, connected Douglas with Evermore. He’s a Ph.D. candidate at Oakland University in Rochester, Michigan, studying ways higher education administrators can provide support for bereaved students, and said he was “frequently citing Servaty-Seib’s findings… so I reached out and she quickly replied, connecting me with Evermore,” Douglas said. Evermore “embraced my work and proposed the idea of developing a nexus for higher education professionals advocating for students on this topic.”
Douglas’ dad reading the sports page, which includes Red’s statistics.
One of the primary issues facing advocates and experts creating these policies is a straightforward data question. According to research conducted by various scholars over the past two decades, the prevalence of grief among higher education students is dramatically underestimated. Reports indicate that 20 to 35% of undergraduate students are within 12 months of losing a loved one; upwards of 40% are within two years of a significant loss.
Despite this reality, as of 2019 only 44 institutions of higher education in the United States had student-specific bereavement policies. Sevaty-Seib argues this is surprising when considering such policies exist at the K-12 level, and are also extended as workplace benefits to faculty, staff, and administrators at most colleges and universities.
Such policies address the risks that are specific to students in higher education, which boil down to these major factors:
Disruption of Academic Performance
The death of a loved one can significantly disrupt a college student’s academic performance. Grieving individuals may struggle to concentrate, meet deadlines, or attend classes regularly. Symptoms can manifest as lethargy, changes in appetite, insomnia, loss of interest in hobbies, and social isolation, all of which negatively impact grades and may result in dropping out. It’s essential for students to communicate with professors and academic advisors about their situation to explore possible accommodations and support systems.
Emotional Turmoil
Grief is a complex and intense emotional experience. Students mourning the loss of a loved one may feel overwhelmed by a range of emotions, including sadness, jealousy, anger, guilt, and confusion. These emotions can affect every aspect of their lives, from relationships with friends and family to their sense of self and purpose. Douglas said that felt “a strange jealousy toward my friends who still had both parents.” Seeking support from campus counseling services, support groups, or trusted individuals can provide a safe space to express and process these emotions.
Social Isolation
While research indicates social support is key, in the midst of grief, students often withdraw from social activities and isolate themselves from their peers. “When I lost my father, it was a very isolating experience,” Douglas said. “I never wanted to bring it up, so I had no idea how many other students were going through something similar.” Higher ed administrators can help grieving students by facilitating connections with their peers in similar situations.
Financial Stress
The death of a loved one can also bring financial burdens, such as funeral expenses, medical bills, or loss of financial support from parents. Students may find themselves grappling with these financial stressors on top of their grief, leading to heightened anxiety and uncertainty about their future. However, data on exactly how dire these situations become for grieving students is hard to find. Indiana University graduate and HELP contributor Malhar Pagay sought to find the number of bereaved students who dropped out due to financial stress, but discovered “the data is nearly impossible to find.” Colleges and universities are not keeping data on whether leaving is related to grief or bereavement. But if they did ask these questions, Pagay said, it would help them “make data-informed decisions about policies related to student grief and bereavement.”
Apr 29, 2024 | Family, Grief
Who Owns Our Stories?
The Fever Pitch and the Harm of True Crime
By Nora Biette-Timmons
There doesn’t appear to be one singular moment when America went true-crime crazy. In the 1990s and early 2000s, tabloids and popular magazines published what they considered salacious details of violent crimes that captured their readers’ imagination. NBC’s Dateline premiered in 1992, and has spent the last three decades reporting out crimes week after week, and remains a major success: In 2023, 125 million people watched Dateline, and it was the number one most popular TV newsmagazine program, according to Nielsen data.
The podcast boom of the last decade can in part be attributed to Americans’ existing obsession with true crime: The This American Life spinoff Serial’s first season investigated the 1999 murder of Hae-min Lee and the subsequent prosecution of her former boyfriend Adnan Syed. Its explosive popularity—it was downloaded 100 million times within a year of its release—brought renewed attention to the case, and in 2022, Syed’s murder conviction was thrown out. However, it was later reinstated in October 2023—because Lee’s brother had been unable to attend the hearing at which it was overturned.
This oversight is indicative of a larger reality. When true crime stories garner the sort of frantic, fever-pitch level of attention of Serial, the lived experiences of those actually hurt by the crime go under the radar—if they’re not outright ignored.
As Lee’s brother told a court in 2022, “This is not a podcast for me. It’s real life that will never end — it’s been 20-plus years. It’s a nightmare.”
The commercial success of true crime means that for far too many people, the worst thing that’s ever happened to them has been turned into entertainment, regardless of whether or not they and their loved ones have received justice of any sort.
For Laura Freeman, that moment came in late June 2022, when a popular TV network aired an episode focused on the case of her mother, Virginia, who had been murdered in College Station, Texas, more than 40 years previously, when Freeman was 14 and her brother, Brad, was 12. Virginia was a realtor, and volunteered at church helping immigrants whose spouses moved to town to attend Texas A&M. Laura Freeman remembers the camping trips her mother would plan; Virginia helped build a very happy, stable family.
It had taken investigators 38 years to determine who violently killed her mother. A former sheriff’s detective who worked the case appeared as an expert on the episode, telling intimate, gruesome details about the case.
A friend of her cousin told them about the show, warning Freeman’s family against watching it. Freeman told Evermore that she only watched a preview of the episode—and saw a picture of her mom’s hand wearing a ring that she now has.
“I felt frozen when I first viewed the picture of my mother’s hand,” she said.
Maintaining the dignity of victims’ stories, even without consent, is possible. An ABC News report on the discovery that led to solving Freeman’s mother’s murder exemplifies how to report crime victims’ stories responsibly. It doesn’t include unnecessary salacious details, for example, in the same fashion that many true crime platforms do, or tease the idea that Freeman’s father may have done it, a common trope in true crime storytelling.
The ABC report also recognizes that this crime had lasting effects on her loved ones, and clearly sought to include their perspective: “While it’s too painful for her children to talk about the case, her son said earlier this year that he’s grateful investigators never lost interest in his mother’s case,” the last paragraph reads.
In an interview with TIME Magazine, Mindy Pendleton said she also felt re-traumatized when she found out that another popular network documentary team was reporting on the murder of her stepson, Robert Mast. In February 2019, they asked her and her family to participate in the show. Pendleton was vehemently opposed to the idea.
“As a parent, a fellow human being, I beg you not to do this,” she wrote in an email to the documentary team, which she shared with TIME. “PLEASE don’t do this!”
Though a producer told Pendleton he’d never faced such a “moral dilemma,” the show moved forward despite her pleas, and Mast’s murder was recounted in the first episode of the second season of I Am A Killer, which premiered in April 2020. While the episode did not include input from Mast’s family, it did paint the woman who killed him “in a relatively sympathetic light,” as TIME reporter Melissa Chan put it.
I Am A Killer has gone on to have two more seasons, and a fifth is coming later this year—proving that the true crime craze has not dissipated.
Besides its exploitative focus on peoples’ most harrowing memories, true crime consumption often comes with another downside, according to Stacey Nye, a clinical professor of psychology at UW-Milwaukee: victim blaming.
Even those who “do everything right” can become victimized, Nye said in an interview with WUWM, an NPR station in Milwaukee, Wisconsin. She also highlighted another problem with true crime: its over-emphasis on white women: “There’s a huge number of women of color, Indigenous women, and trans women who are targeted, and that’s talked about much less.”
No victim deserves to have their story told without their permission—or that of their loved ones. But, like any other media representation, it’s important to be aware of the inequalities that true crime narratives may perpetuate.
It may be hard to determine a comprehensive solution to the exploitative side of true crime, given just how massive the industry is now.
But at least on an individual level, true crime content producers can make amends with victims and/or their families.
The National Center for Victims of Crime has sought to create more understanding among true crime fans, too.
“We have focused on trying to encourage ‘ethical’ true crime consumption—meaning that viewers are mindful of what they are watching and hold the producers/creators accountable for being victim-centered and including victim voices,” Renee Williams, the center’s executive director, told Evermore. “We always advocate for the inclusion of victims in telling their own stories in true crime and media coverage.”
To that end, her organization has created guidelines to help people stay thoughtful as they watch true crime shows or listen to true crime podcasts. Among them are reminders for people to ensure they’re consuming content from legitimate sources and to prioritize content that elevates victims’ perspectives.
So, the next time you scroll through your phone to pick a podcast, or see promo for the latest murder documentary splashed across your TV, take a beat. Remember that, no matter how this content may be packaged—whether it has Hollywood high production values, or uses a crime story to illustrate a salient political point—it is telling a story that belongs to someone else. Real people’s pain is behind these narratives, and it is important to remember and center that.[/vc_column_text][vc_separator border_width=”3″ css_animation=”fadeInRight” css=””][vc_column_text css=””]
We welcome readers to share their experiences with true crime — positive or negative, confusing, frustrating, or supportive. If you have a story to share, email us at hello@stagingevermore.dbdodev.com.
Mar 18, 2024 | Community, Family, Grief
PAUSE: Producing Safe, Culturally-Specific, Expert-Informed Grief and End-of-Life Resources Across America
How three Black-led grief organizations are building resources for communities of color through education and conversations.
By Nora Biette-Timmons[
In the summer of 2020, after the police killing of George Floyd sparked nationwide protests over entrenched racism and inequality, Alica Forneret paused to make a decision. Her career was already focused in grief spaces; after her mother’s sudden death in 2016, Forneret faced further difficulty when she returned to work and received little in the way of institutional support, something she set out to change through education, conversations, and community building.
But following the massive outcry over Floyd’s unjust, public death, she pivoted her work to focus on typically underserved demographics, and founded PAUSE with the mission of creating “spaces that produce safe, culturally-specific, and expert-informed grief and end of life resources serving Communities of Color.”
Black and other historically-marginalized or excluded communities in the U.S. face additional burdens when it comes to grief and the grieving process. “For many people of color, the fear, exhaustion and constant grief that all come from regularly dealing with various forms of discrimination are compounded when additional trauma piles on,” Forneret wrote in a HuffPost article about a year after launching PAUSE.
On top of that, Black folks disproportionately face experiences that cause grief, especially at a younger age: Compared to whites, Black Americans are 20 percent more likely than whites to lose a sibling by age 10; 50 percent more likely to lose a sibling by age 60; and three times more likely to lose a child before 70.
It’s these facts, and the further difficult realities that individuals face after losing a loved one, that Forneret wanted to respond to.
She told Evermore that her organization is exploring the tough questions: “Why [are] end-of-life-related outcomes and experiences different for people of color — and more importantly, how do we enhance that experience by centering identity?”
When drilling down into specifics, she said that PAUSE is seeking answers to queries like, “Why isn’t hospice as utilized by certain communities? Why do terms like palliative care not resonate with, alienate, or turn off certain communities? Why aren’t folks in healthcare settings currently making more culturally-specific referrals? Why are certain professions nervous about referring to doulas, healers, or creatives in the deathcare space?”
“These aren’t new questions, issues, or challenges,” she noted, but said that PAUSE is “hoping to achieve [new] ways of tackling them with different voices and perspectives at the forefront.” The end result, the changes, “come after asking those questions—it’s our hope to create new types of containers to not only have the discussions, but to also create sustained collaborative projects to address the answers.”
So far, PAUSE has developed an incubator of sorts for grief workers to pool their brain trusts and expand their reach. The Starlight Business Development Residency centers “people who are already doing the work in the community. We don’t want to recreate the wheel or take up space where others are already making impact,” Forneret told Evermore. The residency seeks to meet the needs of people of color who work in the deathcare field, who reported that most of the trainings and resources they had access to “were majority white-centered or highlighting western practices that didn’t fit with that didn’t fit with their way of thinking about the ways they wanted to run their business or serve their clients.”
PAUSE’s initial Starlight Residency welcomed 12 end-of-life entrepreneurs for six months; its second iteration, which launched in February, is getting even deeper: For 12 months, the residency will bring together six Los Angeles-based deathcare workers—from a variety of backgrounds, including the arts, coaching, and healing work—to connect, strengthen their skills, and expand the ever-growing community of BIPOC-focused grief facilitators and counselors.
That, she said, is her ultimate goal in her work. “My favorite person to talk to at a conference or a workshop is the person who says, ‘I had no idea I could find a Black, queer, LA-based death doula to refer my client to—can you make an introduction?’” Recognizing the intersectionality of the bereavement process is crucial, she said. “The most incredible impact we can make will come from being open to expanding our networks and acknowledging who can serve our clients best even if it’s not us.”
Dr. Julie Shaw, the founder of Hello I’m Grieving, participated in the inaugural Starlight Residency, and cites Forneret’s work as a guiding light and an inspiration: It “played a pivotal role in both my personal and professional growth,” she told Evermore. Each partner in PAUSE’s work “brings unique expertise to the table, making them invaluable resources within” the death and grief community.
“A crucial form of support” for this type of work “lies in fostering partnerships,” she said, highlighting the importance of PAUSE bringing people together. “This involves not only collaborating with fellow leaders in the grief space but also engaging with professionals from diverse industries who can contribute to the elevation and transformation of death and grief conversations.”
Shaw’s own journey in this space began when her sister died of Lupus in February 2020 but, she told Evermore, “It was only after months of introspection that I finally acknowledged my own grieving process. Taking a moment to ‘say hello’ to my grief, I wanted to extend that acknowledgment to others who may be experiencing similar pain.” To do so, she made T-shirts with the simple statement, which “became conversation starters wherever I went,” Shaw said, “prompting individuals to share their own stories of loss.”
These connections prompted her to train as a grief counselor, and now she works with companies to “help cultivate empathetic leadership, provide resources for supporting grieving employees returning to work, and offer guidance for grievers navigating their professional and personal lives after loss.”
In her practice, Shaw rejects “the idea that discussions of grief must always be somber,” and “draws from my background in athletics to offer motivation and coaching for individuals to navigate their grief journey while striving for personal growth.” As a gay Black and Filipino woman, Shaw told Evermore that she recognizes “the significance of…the intersectionality of grief with our identities” and how these inform “the way we experience and express grief, as well as how it’s perceived by others.”
The perception—or lack thereof—of grief is a subject that’s close to the heart of Nefertiti Moor, the founder of Dearly Bereaved. “Within the Black community…our grief is often swept under the rug and meant to be forgotten,” she told Evermore. “Most jobs don’t give bereavement leave, so a lot of us are ‘sucking it up’ and proceeding with life as if we are okay and we usually are not.”
Her work focuses primarily on “alternative deathcare” for the Black community, which she describes as “a more natural and aligned approach to what our ancestors did for our loved ones” that is rooted in “connection, love, and comfortability for the dying.” A large portion of this requires bridging the gap between many “alternative” practices that are often “whitewashed”; Moor makes sure she is in “more deathcare spaces” to offer outreach to grieving people who may not “feel very comfortable connecting with someone who doesn’t look like them or cannot connect culturally.”
Beyond her services like living funeral planning and grief meditation, Moor also offers guidance about navigating home funerals and green burials. These tools not only allow loved ones to grieve in spaces that are comfortable and familiar, they can cut down on the often-shocking expense of dying in America.
Like many burdens in America, the impact of grieving disproportionately affects communities of color—and, as Forneret expressed in her writing, these traumas are compounded by other, existing, ongoing injustices. That’s what makes work like her’s, Shaw’s, and Moor’s so important: It speaks to the specific needs of these communities, which are often pain points, but as Shaw told Evermore, can be infused “with empathy and even moments of fun” as the bereaved remember their late loved ones.
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