It’s 2 a.m. when I turn to my sleeping husband, his golden-brown face stern with sleep, his chest rising and falling slowly. I gently stroke his ruffled beard and begin to negotiate with God. Don’t let me die in childbirth. Let me grow old with him. I rub my slightly protruding belly, pregnant with a tiny person.
In the midst of creating life — growing a heart, a brain, fingernails, and a set of toes — my mind is preoccupied with the haunting truth of who I am — a Black woman — and where I am — America. It sometimes feels easy to avoid the heaviness of the implications these truths hold. Most days, I can distract myself with the bustle and busyness of life. But on still nights like this one, when my baby is the size of a pear and when what I want most is to be this pear’s mother and continue on as this sleeping man’s wife, I feel precarious and fragile beneath the staggering weight of the repercussions of American racism.
I find myself ruminating on the starkness of maternal mortality rates for Black women, who are three to four times as likely to die in childbirth than their white counterparts. Will I, too, be swept up by the wave of racially-related malpractice? I’m not sure. I contemplate talking to my husband about what to do if something happens to me. As I prepare to give birth to life, I resent that I’m forced to prepare to die. So, in that moment, I don’t. I don’t prepare. Instead, I imagine myself old with wrinkles lining my cheeks and the corners of my eyes. I see myself and my husband linking our aged hands at our child’s college graduation. I picture myself an octogenarian on my deathbed, surrounded by my multigenerational family. I imagine myself “dying well.” I imagine myself dying in a way that many Black people have been deprived of.
It feels shamefully platitudinous to say Black people are dying in inequitable circumstances, given the countless studies over the years proving our higher rates of poor health and disease and lower life expectancy compared with our white counterparts. The plurality of ways Black people’s life spans are stunted and the fullness of their lives blunted is now mainstream knowledge. With this looming reality, a rising multitude of Black people and people of color have stepped into the “death work” industry, hoping to effect a radical transformation. Their goal: to ensure Black people are dying well.
DARNELL LAMONT WALKER’S WORK as a death doula — a non-medical professional, sometimes called a death midwife or end-of-life coach — began inadvertently. In the early ‘90s, when he was just a preteen, he found himself fearlessly engaging with the death of a relative. He recalls his cousin, Delancey, “coming home to die” of AIDS. Though it was commonplace at the time to ostracize people with AIDS, Walker and his grandmother made it a point to be utterly close to Delancey during his final days. They shared stories, tended to Delancey’s ailing body, watched television with him, and sometimes simply sat together in silence. After Delancey passed away, this interest in caring for the dying continued to blossom in Walker’s life. Just a year later, he began volunteering at a local hospice center where he would spend time with seriously ill patients as their lives came to a close.
Now, as an adult, Walker has provided care as a certified death doula in Georgia, Florida, South Africa, California, and the United Kingdom. Death doulas sometimes begin assisting clients right after a terminal diagnosis, before they enter hospice care, and can continue after a death. Their multifaceted work ranges from providing spiritual care such as leading rituals, to assisting the dying and their loved ones with logistical support such as funeral planning and medical paperwork. As for Walker, he provides emotional support and guidance, helping to talk through end-of-life wishes.
He’s a zealous advocate for his clients, many of whom he suspects have been discriminated against by the health care system. “A lot of times I’ve had to advocate for folks in the hospital,” he says, adding that many aren’t given the care or comfort they need while there. His concerns are substantiated: A recent study revealed that Black dying patients were 4.8 percentage points less likely to receive opioids for pain management than white patients. “Some of them don’t even know that they don’t have to be [at a medical facility],” he says. “So, in those cases, I fight for them to go home, where they can die peacefully and with dignity.”
Findings in a 2020 medical study further underscore the racial disparities in end-of-life care: Black people were significantly less likely to get hospice services compared to white people, and were more likely to have invasive procedures during their last six months of life.
“Recovering lawyer” Alua Arthur, a member of the National End-of-Life Doula Alliance and founder of Going with Grace, an organization aiming to bring compassion to end-of-life care, is among the most prominent death doulas in the country. In her TED Talk, viewed by well over a million people, she reorients her audience to the phenomenon of death. Her voice is captivating and gentle enough to lull listeners into an otherwise daunting discussion. She illustrates signposts that led her into death work: her bout of depression, her serendipitous friendship with a woman who had cancer, and, a big one — the passing of her beloved brother-in-law. It was then, Arthur explains, that she longed for someone who would lend an ear to her and her grieving family, offer them informative resources, provide comfort, and assist them in sorting through the many administrative logistics that often come with death. There was no one. And so she became that “someone for other people.”
Oceana Sawyer, a Washington-based death doula whose work is rooted in the “liminal space of active dying and grief,” has organized numerous virtual events dedicated to exploring meditations, movement, journaling, and more as they relate to grief. She has hosted several “Death Cafés” for people of color to engage in group-led conversations about death and dying in their communities.
One group, The Collective for Radical Death Studies, comprises scholars, funeral directors, death doulas, activists, and students of death studies, all of whom view death work as a form of antiracism. Among their many projects, the collective established an ever-evolving literary canon consisting of source materials that decenter traditional Eurocentric notions of dying and, instead, examine “how people of different cultures and backgrounds acknowledge deathways and participate in death work that is by and of their own cultural understandings.”
While many of these transformative “death workers” mainly focus on the dying, a Boston-based church sets a radical precedent in the city: It gathers its predominantly Black congregation members to discuss and plan their visions for their lives and their deaths. The Rev. Sabrina Gray, a pastor at Bethel AME, spearheaded her church’s ministry called Planning Ahead, a program designed to equip congregants with the skills, knowledge, and peace to discuss their end-of-life care plans. In the initial phases of the ministry almost nine years ago, people were not keen on talking about dying.
“When I first started Planning Ahead, after church I would go around to ask people to sign up for a session,” Gray says with a chuckle. “And when people saw me coming, they would go to the other side of the church and say, ‘Here comes the death lady!’”
Much has changed since then. Now, hundreds of the congregants, ranging from younger members in their 40s to older members in their 70s, have attended a Planning Ahead session, and Gray hopes to attract younger people to the ministry (“Death is no respecter of age,” she says). At Bethel, it has become increasingly normal to confront the reality of the brevity of life. Behind the pulpit, the lead pastor preaches about human mortality and the importance of planning for one’s life and death. Congregants have grown to understand how empowering it is to have a say in their end-of-life plans and the freedom that comes with a level of autonomy in regard to their final days. During sessions, congregants are taught effective language to use to advocate for themselves when they feel unheard by their health care providers, and a funeral director and a lawyer are invited to talk about options and necessary documents.
In classes she teaches and as a funeral director, Atlanta-based Joél Simone Maldonado, who’s known as The Grave Woman online, addresses the care of deceased Black bodies to ensure that even in death they are respected and properly cared for. Through her Black Death, Grief, and Cultural Care Academy, she educates funeral professionals and others about cultural competency, racial inclusion, and diversity at the end of life and within grief care. She focuses on the seemingly minute details of death, such as tending to the hair care of the dead by properly detangling textured hair and grooming locks. She also makes sure makeup and skin tone match through “restorative art that focuses on the nuances of black skin.” What may seem minor makes a world of a difference for the grieving families when they view their loved ones for a final time.
In a culture where the untimely and unjust deaths of Black people have become commonplace, the death work movement is forcefully pushing against the status quo and bringing a new vision to life. It is proposing that Black people ought to do the audacious: Imagine a world where their race does not affect the timeline of their life nor the way they die. It implores Black people to envision themselves in their ideal final moment.
As Alua Arthur stood in the center of the stage during her TED Talk, her bright orange ensemble contrasted the darkness of death. “After spending the last decade supporting people as they think through their lives and prepare for their deaths,” she said, “I trust that the real gift of being with our mortality is the sheer wonder that we live at all.”
Now that my daughter, my sweet pear, is born, Arthur’s words continuously reverberate through my mind. My contemplations of my mortality bring me to a state of utter gratitude. It truly is a sheer wonder that my daughter, who once lived within me, is alive and it is a sheer wonder that I get to live this life as her mother. One day, I’ll have to talk to her about the cost of being a Black woman in America, but for now, I’ll simply bask in the wonder of our existence.
Naomi Fedna-Thompson is a communications specialist at Stanford University School of Medicine and a former project coordinator at The Conversation Project in Boston. Send comments to email@example.com.