I start working with a client named Nancy in June 2016. She’s a ninety-six-year-old white woman—a former librarian with an affinity for cats and succulents—who developed Alzheimer’s fifteen years prior. Nancy’s daughter has hired me to sit with her in the elder care facility where Nancy’s spending the end of her life. Even though the staff is generally warm and understanding, these places often feel like warehouses for people to waste away as they descend into death. Often, they are the best a family can do.
Nancy’s daughter realizes the additional social time my visits give her mother is valuable, even if—for whatever reason—she can’t provide them herself. It is clear, though, that Nancy’s daughter loves her mother, and is trying to provide her comfort.
And so I get to know Nancy over several months. This is not unusual in my death work. Some clients I work with for months, some for weeks, some for days, some just a hurried phone call.
At ninety-six, Nancy wants to be independent, but her brain and body no longer make that possible. She likes to take walks solo, but can’t find her way back. The facility she’s at has a locked unit to keep her from wandering beyond the doors where she will get lost. She can barely remember her daughter, let alone her way home. Each visit, I introduce myself anew and ask her if it is okay if I stay for a while because she has no recollection of our previous visits. With a coy, flirtatious smile, she always says, “Why yes,” touching the barrette on the right side of her head and tucking her short but still-thick gray hair behind her ear.
Nancy’s disease has progressed in the time we’ve been working together. At first, we could have a full conversation: we initially bonded over our mutual love of books. Nancy loved books (Agatha Christie’s And Then There Were None was a favorite), not just reading them but their shape, smell, and physical presence. She could wax rhapsodic about the spine of a particular book in a way that made me love it too. We would stay with a topic for as long as she could before a non sequitur introduced a hard left, and I’d try to keep up.
After six weeks or so, conversation becomes harder; she forgets words, gets frustrated, and shuts down. Sometimes, we look through her books on birds and she tells me about them, or she shows off her photo albums. But at this point, she’s forgotten who most of the people and birds are, again to her frustration. So we sing songs together, or I sit by her as she eats, entering into whatever reality she’s currently inhabiting. Our visits are pleasant, and an exercise in going along for the ride.
About six months into our visits, I arrive to find her visibly agitated, a departure from her normal genteel demeanor. She sits alone at a table in the community room, stuffing balled up newspapers into the pockets on the side of her wheelchair while the corner television blares. Groups of elders sit at tables playing card games, reading, snacking, or staring off into space. Nancy occasionally pulls a sheet of newspaper off a stack on the table and tries to read it, but since her brain has atrophied long past the point of comprehension, she stares at it before angrily ripping it into pieces, which she then shoves back into her wheelchair pockets. She does this over and over again as fast as her arthritic hands will allow, but no one takes notice. Life in a long-term care home goes on around her.
Over Nancy’s shoulder in the stack of newspapers, I spot an obituary for actress and socialite Zsa Zsa Gabor, who gained popularity in the early 1950s and had died just a few days before. Given that Alzheimer’s patients in moderate stages of the disease can sometimes access long-term memory, I point at the picture to try to refocus Nancy’s frenetic energy.
“Yes, yes, I know her!” Nancy says immediately.
I am surprised. “You do?”
“Yes, I do. She’s in the pictures. She’s so beautiful. So sweet.” Nancy looks at the page and smiles affectionately. Her shoulders soften. I feel that maybe we’ve found a connection again through the static, despite her mood. After a minute, she squints at the page then picks it up, putting it right up to her face, as though she’s discovered a secret code on it.
She turns her face up in disgust. “Is she Black?” The question is hurled like an accusation.
“Uhhhhh . . .” I stutter. As far as I know, Zsa Zsa Gabor is Eastern European—in other words, pretty damn white. I can see it plainly in her obituary photo and am surprised that Nancy is confused. I am so stunned that I can’t get out an answer before she slams the paper down then turns her laser eyes on me.
“Wait, are you Black?” Again, the word Black is a dart shot at me.
I am dumbfounded. Speechless.
Of course I am Black.
I am Black as fuck.
When I identify myself, one of the first words I use is Black. I don’t use the term African American because in its strict definition, it does not apply to me. My lineage is Ghanaian, and so the legacy of American slavery is not mine to claim. My ancestors were the ones whose villages were pillaged and burned, whose loved ones were beaten and stolen, and who were left to weep over their fates in West Africa. Technically, I am of a third culture—born African, raised in America, my family mixing the two to create our own.
Yet, when a white woman grabs her purse when I walk too fast around a corner, she does not know, nor does she care, that I am Ghanaian. Neither do I. It does not matter. She and I are both privy to her perception of me as a threat. Each of us with highly melanated skin living in the United States of America lives under that same cloud of racism, whether Ghanaian, Jamaican, African American, or Afro Brazilian.
Am I Black? she wants to know. Hell yeah I’m Black.
My mind races at the implications of Nancy’s question. I want to ask a doctor if Alzheimer’s can make people appear more hateful or simply unveils their true feelings, like alcohol unveiling desire and decreasing inhibition—Alzheimer’s beer goggles. I doubt it. Thus far, Nancy’s been pretty sweet with me, but I am aware that mood and personality changes are a symptom of the disease. Is Alzheimer’s causing a kind of race blindness in this woman, revealing race as the false construct it is, or is it allowing her racist flag to fly freely?
Before I can figure out how to answer Nancy’s question, she picks up the paper again and furiously starts tearing it to bits. My mind swirls with conjecture and fear. Nancy was born in 1920, which means her formative years happened during the Jim Crow era. For all I know, she may still believe Black people pollute swimming pools and come from monkeys. When she was growing up, lynchings were still common, as were sanctioned race-based violence and overt segregation. When Nancy was a girl, Black people were not even a full generation past slavery.
Up until that moment, I’d made a conscious choice to feel safe around her. She was ailing, and she needed my support, so I gave her the benefit of the doubt. It should not come as a surprise to me that as her mind regresses, she might say some wild shit. But it is the first time something like that has happened in my death work.
Among many things, what strikes me about this encounter with Nancy is that the inequities she lived through and benefited from would follow her into her death. I think not enough people realize this. I am exasperated that people believe death is the great equalizer. Yes, we all die, but we die of different causes at different rates in different ways. There is nothing equal about death, except that we all do it. Death and dying are culturally constructed processes that reflect social power dynamics—they are unequal. How we die is wrapped up largely in the intersections of our identities.
To adequately support people who are dying, we must be willing to look at their complex set of identities. White women live longer than Black women. Men die earlier than women. Straight people live longer than queer folks. Poor people die earlier than wealthy ones.
These are facts. We are not all born the same, and we do not live or die the same.
On average, Black American babies are born into a different set of circumstances than white American babies. The gap between the two continues through life and into death. Black bodies bear the deep scars of medicalized racism, systemic brutality, and intergenerational trauma.
There’s also the added basic stress of living Black in America, which is created by trying to assimilate into a world which fears Black bodies. In tense moments, I know I stand a better chance of surviving conflict if I make myself small and unthreatening, and if I quiet myself down so that I am not deemed rowdy or scary.
This happens in personal, public, and professional settings. Before I worked for myself, I stayed quiet when work wasn’t distributed fairly because I didn’t want to seem angry. I don’t go for walks at night when I have pent-up energy because I don’t want to provoke neighborhood attention. To this day, I’m scared to get pulled over by the cops. The sheer number of ongoing stressors, big and small, that come with existing in this skin are too numerous to recount.
Yet here I am, a Black death doula, hoping to ease the difficulties we all face in death. My presence in this field is important, because when deathcare is done without awareness of difference, privilege, and bias, it can be used as a weapon, further marginalizing communities and people at one of the rawest, most excruciatingly painful moments of their lives.
This matters. It matters. In the same way people want their identities validated in life, they want that in death too. And it’s crucial that their loved ones see it happen, as a sign of their beloved being seen, respected, and honored.
There is a sort of fake colorblindness that runs rampant in wellness spaces (“I don’t see color” or “I forgot that you are Black”) that sadly has found its way into the death and dying community as well. I can’t trust or believe anyone who says they don’t see color—unless they are actually blind. Their refusal to see me in all my glory serves as a refusal to acknowledge and appreciate my individualism and rich history. It’s an oppressive erasure which does not acknowledge, among other things, that Black people’s strength is evidenced by the ability to surrender without being broken. If I don’t catch myself, it’s easy to feel invisible in a field dominated by white people and stuck in systems that don’t consider the privileges, prejudices, and biases that exist in every other place. If I had a dollar for every time someone said “I don’t know what race has to do with how we die,” I’d pay cash for a pimped-out G Wagon with rims.
As I said above: I am Black. As fuck. It is at the core of my identity. When everything else is stripped away, I’ll still be proudly and loudly Black. I want that acknowledged when it’s my time to go.
As a kid, I didn’t have much of a concept of race. I could see the visual differences in humans, since we’d done a fair amount of traveling in my young life and I was exposed to a wide range of skin tones. When I was six, we moved from Orange, California—where my father was finishing up seminary—to Nairobi. My father had taken a position as the African director for Prison Fellowship International, opening up prison ministries in different countries in Africa. The apartment building we first moved into in Nairobi had Indian families, Irish families, other East Africans. I learned to judge people based on how giving they were. The Indian families were generous with cookies. Other families—the British, Ethiopian, and Ugandan—had children my age who would play with me and my sisters. One American family had rubber balls in every size, which we could take outside while the adults talked about adult things. Race was a foreign concept. The only yardsticks were generosity of spirit and snacks.
My parents enrolled my three sisters and me into one of the best schools in Nairobi, which included lots of the children of various missionaries in Kenya. They were also overwhelmingly white. (Apparently, the ability to leave your home country to travel and spread Jesus is a privilege.)
The classes at Rosslyn Academy were small and mostly segregated by age, except in music class, where younger and older students mixed. The music teacher assigned instruments every week, and competition for drums was fierce. I imagine that most of the students picked drums because they couldn’t be that noisy in their homes. That included me. I only raised my hand for the drums. From one of the back rows, I’d jump up and down with my little hand in the air, hoping to be seen. One day, the teacher finally selected me. My heart did a little backflip at my good fortune.
I walked proudly (read: boastfully) toward the front of the room to claim my rightful place at the drums. As I did, I heard some whisperings. “Why her?” “She’s Black.” “Can she even play the drums?” Slowly, shame flooded in to replace my excitement. It started to dawn on me: my very existence made me different. I am not like them. And what I am is something they don’t like. And they think there is something wrong with me. I wanted to cry in confusion, but beat my pain out on the drums instead.
Because of my parents’ mission work, we never stayed in one place for long. Wherever we touched down, I learned that my Blackness meant something different. We returned to Ghana for a short stint a few years later, where race as a construct does not exist. In Ghana, everyone is Black, so no one has to be Black. There is nothing else to compare it to. I’m glad I had that experience before my family made the permanent move to America years later. It gave me a strong sense of myself before the complicated tentacles of racism began to prick my skin in ultraconservative, evangelical, terribly white Colorado Springs. I felt growing pride in my skin, lips, cheekbones, resiliency, and audaciousness.
And yet.
In my first week in school in sixth grade at Howbert Elementary, I was called a jungle bunny, an African booty scratcher, a monkey, and a fudgesicle. My sense of being the “other” was sharpened, and I grew arrogant to mask my hurt. It’s hard enough to be the new kid halfway through a semester. It was almost unbearable to be one of the only Black kids, chubby, coming from a continent most of my peers looked down upon, while also being in the throes of puberty. My classmates asked if I rode elephants to school and if this was the first time I’d worn clothes. My mom still made our clothes. I liked it that way. I thought I was stylish, but hadn’t yet learned how uncool it was not to have the newest Reeboks or Hammer pants. How dare they call me names when I’d seen more of the world by eleven years old than they would probably see in their lifetimes? They had never even been on a plane to leave the state, let alone travel the world. They didn’t know of the skyscrapers, the toll roads, the electricity, the joy, the history, and the regality of Africa. I said nothing, but I knew they were the ignorant ones. It was humiliating.
My parents comforted me by modeling resilience. When it came to hurt and disappointment, my family’s unspoken mantra was Don’t let them get to you. Tears were allowed, but not indulged. The one time I remember crying uncontrollably was when a kid called me a “fat ugly brown cow” during a game of red rover. My mom told me he didn't understand my beauty, patted my back, and told me not to cry. I couldn’t stop the tears. She let me cry it out.
We were the only Black family on our block, in our neighborhood, in the city, it seemed, so our home was an oasis. We spoke Fante there and almost exclusively ate Ghanaian food. No matter where we went, on Saturday afternoons my mom would line all four of her daughters up and do our hair: blue Ultra sheen pomade, hair baubles in every conceivable color tangled in with rubber bands. Combs of every size littering the floor. We’d sit between her legs, one by one, and she’d tug and pull, detangle, oil, condition, part, then braid us to Black girl perfection to get us ready for church on Sunday.
Meanwhile, school administrators tried to hold me back a grade given my lisp and the continent where most of my education happened. When my parents insisted that I be tested to see how I fared, the evaluators suggested that I skip two grades. I was considered “gifted,” a label that followed and haunted me. How’s that for an African booty scratcher?
Prioritizing my social development, my parents declined to skip me. Praise Yahweh. I felt like enough of an outsider as it was. I wasn’t into what a lot of the other kids were into. Not feeling like the others hurt. I hurt a lot in those years.
Today, I see that being an outsider prepared me for my life in death work in ways that the girl in the “Out of Africa” spotlight in the yearbook could never have predicted. The dying, after all, are outsiders. They are on their way out of this life while the rest of us are steeped in it. We regard them as if through a pane of glass. I’m drawn to get close to it, to the place where people turn away because it is too frightening, too different, too scary. I don’t think it’s an accident that in my Going with Grace doula training classes, white cisgendered and heterosexual folks are sometimes in the minority. I can only remember three straight white guys in thousands of students who are otherwise queer as folk, inhabit many intersections, and celebrate their difference. Those who sit on the fringe in life can more easily get close to the fringe in death.
Still, there were bright spots in my adolescence. For every teacher who could only see my skin color and suggested I strongly consider becoming a secretary (even though I was in Advanced Placement English classes), there was someone like my choir teacher, Mr. Craig Ramberger, who encouraged me to apply to conservatories because he thought I had a lot of talent. I made friends, joined the cheerleading team, made homecoming court and MVP of the soccer team, and enjoyed music classes—early drumming experiences be damned.
Music provided a safe outlet for the big, messy emotions I’d already intuited were a little “too much” for the outside world. In choir, I could sing my feelings and let them go: Pachelbel’s Canon in D made me feel so deeply I hid in the bathroom to cry, embarrassed by the depth of my emotional experience.
As much as I loved it, music as a career path was a no go. My parents instilled the belief in my sisters and me that we could be anything . . . as long as it was a doctor, a lawyer, or an engineer. Something prestigious and high-achieving, in other words, but nothing creative. Creativity didn’t make money—always my father’s biggest concern even though he played the clarinet and bought us recorders to practice on. He wanted to know that we’d be able to take care of ourselves as adults and take care of him when he got old.
After being accepted to a number of prestigious colleges—no thanks to my guidance counselor—I chose Wesleyan University, where my dad got his Ph.D. and where Bozoma was already enrolled. A small part of me still wonders who I would have become had I chosen Oberlin Conservatory. I might be a maestro living in Madrid sipping espressos all day, smoking skinny cigarettes and wearing faded skinny black jeans. I wonder if I also would have eventually found my way to death work. Different paths, same destination?
I chose Malcolm X House, the Black dorm, for my on-campus freshman-year housing. I wanted that feeling again from Ghana, where everyone was Black. The classes and students were a crash course in every piece of Black American culture I had missed in lily-white Colorado Springs—like bell hooks, dance hall reggae, and Spades. (I suck at Spades but stand on the side talking shit.)
Gradually, I understood that Blackness could look and sound like anything. It could mean my hilarious freshman-year roommate and forever best friend, Magda Labonté, a Haitian American Brooklynite actress and Libra who loved Mr. Cheeks from the Lost Boyz and wouldn’t take an ounce of perceived disrespect from anyone. It could look like the Bay Area premed students who threw around the word hella and stressed about organic chemistry. It could look like Nigerian art students and Brazilian athletes. I could be a Black weirdo hippie and everybody was cool with it. Björk, plantains, and Biggie Smalls—all were my lanes.
So was activism. In 1998 I pledged a historically Black sorority dedicated to sisterhood, scholarship, and service—Delta Sigma Theta Incorporated Pi Alpha Chapter—and studied abroad in Ghana, where I was freshly enraged by the ravages of colonialism. Upon my return, I was elected student body president, running on a platform to support financial aid for students of color, to reduce the loan burden we carry after graduation. We graduate tens of thousands of dollars in debt, and then we spend decades trying to outrun the interest rates, barely touching the principal. We cannot buy homes or amass wealth even with our education, which is meant to even the playing field. We start in the red. The system is not set up for us to win. It shows up in different aspects of how we live, and it also shows up in how we die.
My anger continued, and my formal education gave me the tools to make people finally pay attention. I started to understand my power and supplemented it with my outward appearance. Black combat boots, camouflage pants, an African-print shirt I’d likely sewn, and a cowrie shell necklace were all in heavy rotation. Then I cut my hair off.
The “big chop,” which rids a Black woman of all chemically processed hair, didn’t become popular and mainstream until twenty years later. But years of trying to fit into a white beauty standard had exhausted me. Instantly, the barber was unhappy with my request. “That haircut will make you look ugly,” she observed. Internalized racism is a bitch.
She asked if I’d had my heart broken. I said yes but not the way she was suggesting. My heart had been broken by Amy in seventh grade, who told me my worst features were my lips, my butt, how dark my skin was even though she frequented tanning beds. My heart was broken by Seventeen magazine’s models, by teachers who refused to see my intelligence because of my skin. My heart was broken by America. I told the barber, again, to cut it off. My hair was going to grow out of my head just as it came in. Coiled. Thick. Beautiful. And brazenly Black as fuck.
There is almost no education about caring for Black people in the deathcare industry, but on the slim chance some exists, it usually comes in the form of “Black hair care.” This segment focuses on caring for a tightly coiled hair pattern—as if this is the only “Black” hairstyle, and not one of about fifteen different hairstyles that I alone have had throughout my life.
How we define a good death is largely impacted by our identities. In conversation with a trans death doula student at Going with Grace, they mentioned that they don’t know what a good death could be for them because they are scared to envision it for themselves. The rate of violent death for trans folks is staggering, and this student just doesn’t want to be murdered. Yet when imagining what a “good death” could be for a cisgender, heterosexual, white person, it can come effortlessly.
We are conditioned to think of a “good death” as one that happens at an old age, in our own home, surrounded by our loved ones, after full peaceful lives, having our humanity acknowledged and honored at the end of life. Most of the good deaths we think of are those in which the body slowly shuts down.
Historically, however, Black people have died a great number of “bad” ways—at the hands of those that kidnapped and captured them, in the dungeons packed upon each other, in the transatlantic slave trade, at the hands of slave owners; through beatings, government experimentation, street violence, police brutality; in childbirth, in the carceral complex; and from a host of other conditions in the body, as a result of systemic racism. These epigenetic traumas take root in the family tree, passing down from generation to generation. But generational joy is also our birthright.
Many of the attributes that we think of in the “good death” are the same attributes that create a good life. But everybody is different. Every body. The myth of a Black monolith, in death, as in life, robs us of our quirks, our humor, our loves, our obsessions, our individuality, and our intersections. I think it’s an attempt to make Blackness easier to understand and digest. But you cannot reduce us. How do you generalize about a race of people that has endured centuries of brutalization and still refused to have their joy suppressed?
Acknowledging this truth is the best way to achieve that elusive good death, which is based on who we were as individuals, and not as a monolith.
We all deserve that.