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The State We Are In: Neither Here, There, nor in Heaven

Image courtesy of Madhushree Ghosh. Illustration by Carolyn Wells.

Madhushree Ghosh | Longreads | May 2021 | 16 minutes (4,261 words)

Seventeen years ago, I receive the call most immigrants dread. It is inevitable, and yet. The call announces that my Baba, my indefatigable, extroverted, positively enthusiastic father, was felled by a massive cardiac arrest. On a heart that was the most giving one among all the people I’ve known. Life in America at that second continues without a ripple. Only, my life changes, divided into before-the-call and after-the-call.

I ask my now-ex. “Will you come with me?” — like a child.

Awkwardly, he says, “Do you want me to?” — like he has an option and he could escape this uncomfortable moment. I call him my now-ex for a reason.

“My Baba is dead,” I say mournfully. As if saying it over and over would make it real. It wasn’t real. It still isn’t.

Journalist Aman Sethi talks about the burning funeral pyres that light up India’s cremation grounds in the New York Times. With over 300,000 new daily infections and over 21,000 dead in the last week in April, the pyres are lit in the parking lots of crematoriums. Author Rani Neutill writes about the pyres and her own journey back to cremate her mother five years ago. We both acknowledge these images transport us back to our own trauma of losing our parents, our loved ones. PTSD all over again.

***

On an August evening last year, now Vice President Harris tells the world, “Family is my uncles, my aunts and my chittis.” — as she accepts the Democratic nomination. I — and I am sure, millions of Indians, Indian Americans like me — weep with unbridled joy. To me, this kvelling was surprising, because I didn’t realize the depth of unbelonging I had felt. I have lived in America longer than in India, my birth country. I’m not even Tamil, and yet, that word, “chitti” — younger sister of an aunt, mausi, mashi, moushi in other Desi languages — reverberates in bursts of validation all through our immigrant communities. Two months later, author, host, and activist Padma Lakshmi notes what that ripple effect would be when a woman of color is vice president. Padma articulates what we all felt — we may not agree with everything Vice President Harris said/did, but we do like what she represents. We are hopeful.

As Indian Americans who have lived most of our lives outside our birth country, we abide by unwritten rules. We work hard, we internalize racism by being “model” immigrants. We follow American rules and norms, in effect, we try to create very large waves of “good immigrants.” We sympathize with other people of color but try not to draw too much attention to ourselves, except when we are excelling at academics, Spelling Bees, or inventions. To say we have internalized our colorism and racism is minimizing what we feel — we try so hard to “fit in.”

***

For Hindus, death is the final stage of life, the next journey where the soul travels different levels of earth, the nether lands, and on to heaven. The concept of reincarnation is an idea one grows up on, even if we have moved far away from it.

It takes me almost 36 hours to get to my Baba. A layover in Kuala Lumpur watching a somewhat famous Bollywood star hamming it up for his fans in the lounge, waiting for Didi, my sister to join at the airport connection area, both of us now fatherless, rudderless. I do not remember those 36 hours. I remember every moment of those 36 hours.

In the lounge, waiting for Didi, my sister to join at the airport connection area, both of us now fatherless, rudderless. I do not remember those 36 hours. I remember every moment of those 36 hours.

When we reach Chittaranjan Park, the Bengali neighborhood of middle-class former refugees of the 1947 Partition of India, my Ma is already waiting, eyes swimming in tears, but a hopeful smile on her tired lips. Her daughters are home. She isn’t alone in her grief anymore.

The house is filled with neighbors and strangers. Everyone looks at Didi and me, expecting us to collapse, weep, wail, because only a frantic acknowledgment of loss matters to the neighbors. Didi and I don’t cry, though we hug our Ma despite us not being a hugging family.

The neighbors want to know, “Who will give mukhagni?” — only menfolk are allowed to go with the dead to the cremation grounds. Only sons or designated male family members are allowed to light the pyre, mukhagni (adding fire to the mouth of the dead). Women are second-class, not permitted. Women are to bear children — souls may get attached to them when they return from the cremation grounds — not allowed, not allowed.

Didi tells the crowd and to no one in particular, “Ma will give mukhagni. We will be there with her.”

I hear the collective soft gasp of horror. But no one says anything. The Ghosh daughters are foreign-returned, with Western ideas. They don’t see how wrong this is. How men and women aren’t equal.

We have my father to cremate. We have no time to worry about what the neighbors think.

We have my father to cremate. We have no time to worry about what the neighbors think.

***

In a country that brought in immigrants and slaves for centuries, Indians are the “good” ones, who are still shocked in the ‘80s when the Dotbusters attack them in Jersey City. “We are Americans too,” we say, the hatred is incomprehensible.

Post-9/11, the first immigrant to be gunned down in Mesa, Arizona, isn’t a Muslim but a Sikh. Balbir Singh Sodhi is killed at the gas station he managed by a man who didn’t want “towel heads” in his country. As Indians who give up their birth country’s citizenship when we become U.S. citizens, we gulp down that discrimination, that unnamed fear, to pay taxes, buy property, wave the U.S. flag, vote in elections, because we have earned it. We are model citizens, even when we remain entwined with what our birth country does. What we become is casual observers of what’s happening in “desh,” but very involved in the American way of life. We choose, because we are made to.

***

As the years go by in a country not our own, we spend time teaching non-Indians what India represents. Soon it is descriptions of the festivals, the cuisines, the food, our saris, politics, and minimizing how much cricket is a religion. We minimize because it’s easier to do that than push Americans to explore cultures other than American. We minimize sports, religion, food, life.


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But then, when we interact with Indians in India, our attitudes are of condescension toward those we left behind, mixed with cultural respect for elders as we were taught. We roll our eyes at WhatsApp Good Mornings and rose gifs from family and classmates pinging at midnight. We send back things like Costco cashews, or thick socks for the family, and college advice for future generations. We are stuck in the decade we left desh — for me it’s the ‘90s, the advent of Madhuri, Rani, Shahrukh, and revenge movies.

We still hate the social media forwards, but surreptitiously sign up for Signal because the WhatsApp gang told us to. However, we dare not leave the high school group of middle-aged classmates because they connect us to our long lost childhood. We post pictures of dishes we’ve created during the pandemic, but secretly, we crave the spicy paapri-chaat mix of crunchy goodness from the stall next to the bus stop at Delhi University. We scroll online sites for the Desi dhurrie, spices, fabrics. We’re more up to date with the politics from desh than ever.

After a few decades in America, we miss the things we consider ours. We may return “home,” armed with U.S. citizenship because we have the freedom to do so. But lately, we go home, not because we can afford to but because we’ve reached a stage in life where our people are getting older, sick, or dying. Guilt that we abandoned our parents, our extended family, our home for better lives in America, is what usually guides us back. But even then, we visit for two weeks at most, because work in America beckons like an angry, righteous, and indignant spouse.

But lately, we go home, not because we can afford to but because we’ve reached a stage in life where our people are getting older, sick, or dying. Guilt that we abandoned our parents, our extended family, our home for better lives in America, is what usually guides us back.

***

In 2004 when Didi and I get to the Lodhi cremation grounds, we are part of a handful waiting. The priest and the “body handlers” ask for cash to expedite the services. They speak only with the menfolk who accompany us. When we go in, with Baba — his body clad in a new dhoti and kurta hurriedly bought to make him look good on his last journey on a flat wooden bed covered with marigolds and rajnigandha — Baba looks like he’s sleeping. We sprinkle him with his favorite aftershave, as if we want him to arrive at the heavenly gates like it’s his first day at his new job.

We sprinkle him with his favorite aftershave, as if we want him to arrive at the heavenly gates like it’s his first day at his new job.

The priest says the prayers that guide the soul on its journey. They ask us to throw flowers at the body. They sprinkle ghee all the while chanting shlokas that mean nothing to us. Then they ask Ma to hold a bunch of incense, and place them on Baba. She does, howling, because among the Ghosh survivors, she knows what comes next. They light camphor and place it near Baba’s head. Handing a small fragrant sandalwood piece, they tell Ma, “Isko yahaan lagaaiyeh.” — put this here, pointing at Baba’s chest. I know they mean his mouth. Mukhagni. Fire to the mouth.

Handing a small fragrant sandalwood piece, they tell Ma, “Isko yahaan lagaaiyeh.” — put this here, pointing at Baba’s chest. I know they mean his mouth. Mukhagni. Fire to the mouth.

Ma does that. Didi and I hold her between us. Those cries haunt me. They will haunt me till I die. The wood bier trundles away from us as if he’s on a makeshift train ride. I did not realize that would be the last time I’ll see Baba. The crematorium fire roars like a hungry dragon at the far end. Baba enters the flames, the orange fire taking over our world.

That is the last time my family is together.

***

The Great Pause has thrown that nostalgia out like trash. The vaccines cannot be developed fast enough. Being part of the scientific community gives me the privilege of receiving the Moderna vaccine within the first month of 2021. I haven’t seen my extended family and friends in India for over three years — life, then work, and then the pandemic happened. Staying alive in a pandemic has been the reason to stay put.

My life, as it is for many of us immigrants, revolves around phone calls to India early on weekend mornings. India, roughly half a day ahead of us, is also used to those calls. There were times when those calls were short, maybe 10 minutes, our eyes on the clock indicating the $2/minute price on a calling card. Not anymore. Our privilege is calling our cousin for a masur dal vada recipe. Our privilege is us tweeting anti-Indian government comments without concern for whether our families will be harassed by Modi-bhakts. Our privilege is that we are Americans and our bravado too, is American.

***

India watches us in 2020 grappling with the virus racing through New York, L.A., Texas, and Florida like the California fires usually ravage our canyons, jumping highways, towns, and roads resembling acrobatic dragons.

“Ah, we can’t afford shutdowns. We had the BCG vaccine, we’re immune,” my former classmates say, noting why the TB vaccine may lead to a lower coronavirus infection rate.

The first wave doesn’t phase India. It’s Modi’s India — brash, young, arrogant, and complacent. In May 2021, the Lancet notes the government’s response of “[f]ully opening society with unrestrained crowding, mass gatherings, large scale travel, and lack of personal protective measures such as masks” gave the public a false sense of healthcare and vaccine security — that the pandemic had passed India by, much like the first wave.

Madhushree Ghosh’s high school classmates.

During the first and many waves in America meanwhile, we stay home. “Hunkering down” is a phrase I never want to hear again. Then religious places, movie theaters, stores, and restaurants shut down. The owners and workers protest.

Our Indian families and friends find the outrage amusing, “Ah, you’re all such rule-followers!” The condescension we had shown Indians as green card holders, as Indians who’d escaped to a better life, returns against us with a vengeance. The public, our extended families, and friends laugh at our caution.

“Yes, but this will contain the virus,” I counter.

“Sure, but in India, we’re so many people, nothing will work. We’re done with the pandemic here, Madhu,” my WhatsApp classmates opine.

***

During the first wave, in 2020 at the end of March, a 21-day lockdown is established by the Modi government to curb the virus. Over 120 million migrant workers left stranded, walk back to their villages and homes, making it a migration ten times larger than when Hindus and Muslims moved between British-divided India and Pakistan during the 1947 Partition. The Desis who can stay home are the privileged ones.

Indian-Americans have our own lockdown issues to handle. Beside a few articles, tweets, prayers, and thoughts, we don’t worry about the migrants. A very well-known American activist tells me that Americans get “crisis-fatigued” quickly, and not to expect them to think much about issues outside of America.

During a WhatsApp call, architect and high-school friend Anuj Arya says, “Migrants who I’ve worked with as daily wage construction workers, can’t survive without their wages. If they live in a 20X20 foot space with 10 more people, one of them getting COVID means the rest of them do too.”

He adds, “A COVID QPCR test is 1500 rupees (about $20). It’s beyond their reach.”

***

When the second wave hits India in April 2021, no one is prepared. Not the government. Not the healthcare system. Not the people.

When the second wave hits India in April 2021, no one is prepared. Not the government. Not the healthcare system. Not the people.

A country of 1.3 billion is now gasping for air. By April 21st, 2021, the oxygen requirement is over 8000 metric tons per day. India, as per the government, produces 7127 tons daily. People aren’t dying because of the virus. The COVID-compromised patients are dying of suffocation.

***

We sit outside the crematorium in October, watching Baba’s remains burn at high heat. The chimney above the oven spews out hot carbon air.

“That’s my Baba in the air,” I think, feeling nothing.

A few hours later they call us.

They tell us, “Hold your palms to receive the ashes.”

Didi and I hold the clay matka with the ashes and bones. It is harsh, real, immediate. There aren’t pretty urns priced according to your financial ability. It’s a reddish clay pot, with gray ashes. A priest-helper adds, “Yeh dekhiya, your babuji’s nerves are connected at the nabhi.”

Baba’s nerves are knotted near the navel — which never burns completely. This is why Hindu philosophy says we are connected to our ancestors through our nabhi, navel. This is added to a separate dish, covered with another clay plate. We are to take it to the Ganges, the holy river that will connect my father’s soul to the gods. Much as we don’t believe any of it, we do what we are told to.

Didi and I head to the Yamuna river in her best friend’s car. My father’s ashes rest on my lap. The clay pot is still hot from the crematorium. It is surreal and yet, here we are. Here we are.

We get out of the car close to the Yamuna, a tributary that connects to the Ganges. The river is thick with grease, decaying animal corpses, feces, and industrial effluents. The smell is nauseating and yet, Hindu religion tells us this river will connect Baba to the gods. And who are we to deny that?

The river is thick with grease, decaying animal corpses, feces, and industrial effluents. The smell is nauseating and yet, Hindu religion tells us this river will connect Baba to the gods. And who are we to deny that?

Ma gets out of the other car, her arthritis makes her older than she is. She waits silently for us as Didi and I climb over rocks slick with dirt, shit, and dead animals. Didi looks ahead, one step at a time, no words. I follow. This isn’t what Baba would have wanted. This is all we can give him.

The priest stands next to us, chanting hymns. “Put the ashes here,” he points.

Didi lets the pot float. We have the nabhi in its clay dish. He points at it and tells me to throw it inside the turgid river. I do.

“Walk, walk! Don’t look back,” the priest says like we are suddenly in an adventure movie.

It must have something to do with the soul latching onto live people. I don’t know. I don’t care. I want to look back, but I don’t.

At the car, my now-ex says, “Uff, that river sucks, doesn’t it?” — like a naïve American would.

I ignore him. My Baba is dead.

***

Twelve months after the first wave, before the Hindu festival of Kumbh Mela encourages millions to congregate at Haridwar, near the Ganges river bank, the B.1.617 double mutant is already circulating among the people. The Mela is held every 12 years, but the Hindutva nationalist government appeases Hindu astrologers to allow a super spreader event to happen a year earlier. On April 1st, millions descended. The Mela was stopped two weeks later. A double mutant with an exponentially increased infectivity rate has now taken over the entire country — larger metropolitan cities like Delhi reached a COVID positivity rate of 30% in 12 days. Only 9% of the total population has been vaccinated.

On WhatsApp group messages, I now see posts about where one can buy more oxygen, or how to kill the virus by drinking water. Vaccine hesitancy, and misinformation circulates as rampantly as the virus through uneducated guesses, pro-government media rumor mills, and government silence on the total failure of the hospital and healthcare system. There’s a vaccine shortage which was expected to abate by May 1. It hasn’t.

A month ago, citizens and the Indian government were complacent enough to not mandate masks, nor ban large gatherings. The political rallies to pander to the public and gain votes took place like 2021 was a normal year.

***

On my high-school and middle-school WhatsApp groups, there are no rose gifs anymore, nor are there midnight pings of “Good morning!” The threads are somber, humming with stress, slow panic, and calls for help. The only requests are pleas for oxygen cylinders and hospital beds in Delhi suburbs. We hear of patients gasping for breath in hospital hallways and parking lots, dying in ambulances. Neighbors help neighbors cremate their loved ones.

A relative dies in Hyderabad and his family waits for hours to get the paperwork completed before he is hurriedly cremated. Crematoriums and cemeteries operate beyond capacity. Families wait for hours at cremation grounds in lines snaking through Noida and Ghaziabad to cremate their own. The Noida Hindon crematorium sets 14 funeral pyre platforms on the sidewalk for the COVID-19 dead to perform the last rites there instead. Dead and dying line hospital pathways. There is no respite.

***

Meanwhile in America, for us, India feels like what New York did in 2020. But Modi continues to punt to states to determine healthcare logistics, while he and his administration have created one of the largest humanitarian crises in this pandemic. On Twitter, we watch an interesting trend of the entire world going about their lives as Indians gasp for breath. It’s as if India isn’t a country that needs to be helped. We hear that the U.S. government didn’t allow for vaccine raw materials to reach India but the blame lies with the internal decisions made at the Indian government level.

We see “trauma porn” photos of funeral pyres burning through the night skies in India. The Western world watches those images over and over, and the Western people react to it. This is showing TV ads of malnourished African babies for us to donate instantly. This is Sarah McLachlan’s “Angel” playing for animal shelters and pulling at our heartstrings.

But where does one donate? Does it go to the PM Cares Fund, run by the nationalist Prime Minister with no way of knowing how your money was used? Where there is no guarantee that the money reaches the migrants dying hungry, or the patients waiting for oxygen or Remdesivir?

I wonder if daughters were able to accompany their dead father’s body to the pyre. The cremations are taking place morning through sundown. Overworked priests are charging more. The lower-class Dalit funeral grounds helpers work round the clock, as do the hospital ward workers, the caregivers. Are the family members able to pay their last respects like I was able to? Do they know if the dignity expected of the dead was given to theirs?

***

Hospitals shouldn’t be overburdened. Oxygen supplies should have been available. Vaccines in the world’s largest manufacturing country, should be, well, available. And yet, the latest news cycle asks not to blame but to unite, to blame America for holding the raw materials for vaccine production instead. It’s easier to hate the Western country, hand-wave over the flouting of social distancing rules, because religion and elections are more important than gasping-for-breath Indians.

***

As an Indian who is a U.S. citizen, the guilt I feel is one that paralyzes me. I have abandoned my country of birth to choose the country of citizenship for personal material gain. Of that I am sure. How am I to assuage this guilt? The American way is to donate. But where do I donate? Not to the government that has systematically pushed against unity, religious, and caste freedom creating a Hindutva country. What do I do? How do I amplify this without tokenizing Indian grief?

We hold onto phone calls, reach out to friends, family members, find out ways, or “jugaad” as we call it in India, to make sure our people are safe. Others want to donate, but don’t know how. They See Blue GA circulates a Google doc of places that’ll accept our dollars. We want to do anything, something, something to help. Because if we can’t help, and if we can’t be there, and if we can’t do anything, the guilt we’ve always felt as Indians who became Americans will be fueled enough to rage on further.

As immigrants who love this country, we are grateful for the privilege and we also love our birth country that’s in such hell. Behind the scenes, my group of Desi authors text each other bemoaning the state we are in, neither in desh/home, nor in heaven. COVID is definitely a stark reminder of the choices we made. Feeling guilty is our state of being, besides a state of exhaustion and fear.

It’ll take India decades to recover from this and I am but a bystander, whether I like it or not.

Twitter asks about the use of funeral pyres and how disrespectful it is — do you not rage when they do this to your people, Twitter asks. No, I say, no — because what is disrespectful is how and why Indians are dying.

It takes President Biden two weeks before he does a U-turn and announces millions of AstraZeneca vaccine doses to be routed to India. Two weeks, with thousands dying daily. America and American leaders are silent. Only with social media outrage, behind-the-scenes negotiations lead to Biden behaving like the leader he says he is. Those pyres speak much more than the world’s largest humanitarian country. Are those photos disrespectful? Not if they coaxed my country of choice to act like the leader it says it is.

***

I hope Vice President Harris comments, perhaps shows solidarity with the country her mother comes from. It isn’t her job, but I’d like to think her chittis would be doubly proud of her if she did.

Right now, as an Indian American, the guilt propels me to doomscroll like I did with other Americans last year. Now I call my friends, and I tell them, “Stay safe,” like it’s a mantra that’ll save them all when their government has failed them.

My Baba’s cremation has stayed with me for decades since he left. The families losing their loved ones can’t even touch their dead as they’re whisked to the cremation grounds. COVID-19 has destroyed life in ways unimaginable.

The guilt I feel, buzzes like a loud bee.

***

Madhushree Ghosh‘s work has received an Honorable Mention in Best American Essays in Food Writing. Her work is Pushcart-nominated, and has been published in the Washington Post, The New York Times, Longreads, the Rumpus, Catapult, Hippocampus, Atlas Obscura, Unearth Women, Panorama, Garnet News, DAME, and others. As a woman in science, an immigrant, and daughter of refugees, her work reflects her roots and her activism. Her food narrative, “Khabaar: An Immigrant Journey” is forthcoming Spring 2022 from University of Iowa Press. She can be reached @writemadhushree.

***

Editor: Krista Stevens
Copy editor: Cheri Lucas Rowlands
Fact checker: Lisa Whittington-Hill

 

Out There I Have to Smile

Illustration by Ashanti Fortson

Heather Lanier | Longreads | March 2021 | 16 minutes (4,473 words)

 
A few years ago on a gorgeous June day, I found myself in a windowless bathroom with forget-me-not wallpaper, my butt on a toilet, without any good reason to be there. It was a standard mothering move. Beyond the door, I could hear my two small kids laughing and eating cereal, so I stayed in this little space, smartphone in hand. In an hour, I was headed to a bowling alley with my kids, both of whom could now walk through a doorway on their own. And this was a brilliant new development, not just for the 2-year-old who’d learned to walk at the standard age, but for the 4-year-old, Fiona, who’d spent the past three and a half years in physical therapy striving toward this lofty goal. Forty-five percent of people with Wolf-Hirschhorn syndrome walk, said the report when I first got her diagnosis. Her ability to walk meant I no longer had to consider wheelchair or stroller accessibility. Her ability to walk independently meant she could navigate the tight turns around a bowling ball return without having to steer a clunky walker. So I was taking my kids bowling, as soon as I stopped pretend-peeing and reading on my phone.

I was reading a friend’s blog post about a recent appointment with her counselor. As soon as she mentioned her son, who has the same chromosomal syndrome as my daughter, she began to cry. 

The therapist asked, “Why do you always cry when you talk about him in here?” 

In here was the therapist’s office, maybe a subdued room with sage walls and elephant statuettes. Out there, my friend pushed her 4-year-old son in a wheelchair. 

My friend looked up at the ceiling a moment and thought. Why do I always cry when I talk about him in here? The answer hit her, and she sobbed. She managed this sentence, eked out between heaving breaths: “Because … out there … when I’m talking … about him … I have to smile.”

I put my hand over my mouth. The windowless bathroom. The forget-me-not wallpaper. I burst into tears. 

* * *

For bodies that don’t fit into a certain mold, for bodies we call disabled, out there can be a treacherous space. Out there has steps where you need a ramp. Out there has strobe lighting that could make you seize. Out there writes stories over your body (she’s sad, broken, wrong) when you just need toilet paper. 

For parents of kids with disabled bodies, out there can be exhausting. It maintains chipper myths about babies that your child breaks. What’s with that feeding tube? It tosses questions at your feet like it’s throwing you something between flowers and rotten fruit. Why’s she so small? What happened? What’s wrong? You answer with a smile, or you answer with fatigue, or you turn your head because none of your business

Out there is risky. Your son might sit in a classroom led by a teacher who doesn’t believe he can learn. Or your daughter might need medical care from a doctor who thinks she’s a tragedy. 

Out there is inconvenient. The doorway isn’t wide enough for your adaptive stroller. The wood chips of the town’s only playground are terrible for wheelchairs. The librarian concludes public story time with a craft that requires scissors, and you must now serve as your child’s occupational therapist, back hunched, palms sweaty, enabling the arduous work of cutting paper.

Out there is not exactly designed for your kind. 

* I use both person-first and identity-first language in this essay. As a nondisabled person, I don’t have a right to claim an identity for someone, so I err on the side of identity-first language until I know a person’s preference — and my daughter hasn’t indicated one. I also use identity-first language to stand with disability activists who argue that linguistic acrobatics to avoid the word “disabled” are a manifestation of our culture’s ableism. We do not say, for instance, “I am a person with femaleness.” #saytheword

As a white, straight, cisgender, non-disabled woman, I must imagine how this sentiment holds true for other bodies. My experience as a caregiver to a kid with disabilities* has put me in the closest relationship to this truth. Out there is not designed for many. 

Which is why in here spaces are so delightful. And it’s why, especially in early parenting, I often lingered in them for longer than I needed. Idling in the bathroom. Struggling to leave the house. In here applies little pressure. In here asks no questions. In here often lets you and your kin be as you are.

In preschool, my daughter Fiona walked stiltedly. Her gait was not the smooth coordination of typical preschoolers. She slapped her right foot down, and her left foot followed pigeon-toed, afterthought more than intention. She sometimes held her arms out, and because she was nonverbal, she said, “Ahh, ahh,” plowing toward whatever caught her eye. When we were out there, people sometimes looked at her because she was adorable and magnetic and thrilled by life. And sometimes people followed her with a calibrating gaze. I could tell that they weren’t admiring the cuteness of youth but instead trying to answer the question, What’s wrong? 

“You’re lucky,” a pediatrician said to me during a routine checkup. “At least you know what’s wrong. Some parents don’t even know that.” He looked up from my kid, his eyes sharp with intensity, and nodded. “You know what I mean?” But it wasn’t a question. 

Nothing is wrong with my girl, I wanted to say.

No, of course not, the doctor might have corrected. Inside he’d likely think, Yes, of course there’s something wrong, and then he’d recite the long list of diagnoses in her medical file: epilepsy, hypotonia, hydronephrosis, scoliosis, developmental delay….

Things her medical file has never listed: loves coloring, loves cheese, rocks a Converse sneaker, appreciates jalapeños, finds the beat, will increase speed tenfold for a turn at the swing.

Wrong can slide too quickly into another concept: tragic. There’s a prevalent Hollywood cliché (which bears no resemblance to real-life statistics) that disabled people wish to die. I didn’t need a child with Wolf-Hirschhorn syndrome to spot this cliché; I’d noticed it years before I had Fiona. Million Dollar Baby: a female boxer triumphs in fight after fight only to break her neck, end up quadriplegic, and ask her coach to help her kill herself; he obliges. Me Before You: a grumpy guy in a wheelchair is hell-bent on committing suicide, then falls in love with his caregiver who tries to show him that life is worth living. He kills himself anyway, because, well, you know, wheelchairs. The films are dramatic expressions of the old, ableist assertion that I’d rather die than live like that. 

What I didn’t realize until having Fiona is that if a person is intellectually disabled, a parent’s feelings often become a barometer for their kid’s worth. What my friend and I have known, without ever knowing we’ve known, is that our culture judges the worth of our kids by judging our contentment. I hadn’t named this until I sat in the bathroom and read my friend’s blog post on my phone, but along with all the obstacles to surmount or circumnavigate or abandon, out there obliges us to offer our cheer. Are we happy? If so, then maybe the lives of our children aren’t tragic. Out there I have to smile. 

* * *

In The Spirit Catches You and You Fall Down, Anne Fadiman tells the story of Hmong child Lia Lee, who has severe epilepsy. It’s a highly lauded book, and for good reason. But midway through, Lia suffers a massive seizure, nearly two hours long, and goes from a happy, hyperactive child to a  mostly unresponsive quadriplegic. “Vegetative state,” the doctors said, and I cringed, eager for Fadiman to take the phrase to task. Because Fadiman had thus far done a beautiful job revealing the cultural biases of both the Hmong family and their Western doctors, I figured she’d unveil the ableism inherent in ever likening a human to a carrot or a beet. I thought of Martin Pistorius, who spent 12 years in an unmoving body that doctors assumed was also “as good as not there, a vegetable,” but as he says years later in his TED talk, “I was aware of everything.” 

Fadiman fails here. She doubles down on the doctors’ sentiment, offering this description of patients in so-called “vegetative states”: “pasty-skinned carcasses with slack mouths, hair like straw, bodies that smelled of urine even after they were bathed.” Carcasses. The word cuts. It describes shells in which humans once lived. It should not be used to describe actual humans, still living. Fadiman agrees with the family when they think Lia’s soul is gone.

At this point in the story, Fadiman pivots to the mother, oh the mother, and how she adapts to her child’s altered life. Fadiman paints some beautiful portraits. The mother lovingly washes her daughter once or twice a day. The mother wears her daughter in a hand-embroidered cloth carrier. The mother feeds her daughter spoonful after spoonful of rice and then kisses her rice-covered face. “Sometimes I thought: this is not so terrible,” writes Fadiman. Mid-page, I thought Fadiman might lean toward valuing Lia’s new, altered life. Admittedly, she’d do so through the trope of Lia’s gifts to nondisabled people. Look at how much love she brings her family. But gift is certainly better than carcass. 

Instead, Fadiman pivots: “But whenever I began to be lulled by this relatively rosy picture, I was drawn up short by an explosion of rage from [the father] or, more frequently, by a sudden seepage of grief from [the mother].” The parents’ feelings tip the scales. Fadiman can’t see the value of Lia’s life if it brings not just love but suffering, if caring for Lia is not just a tender and physical act of love, but also a grief-stricken, arduous job.

Out there we all have to smile. 

* * *

Happiness is an encouraged performance in America whether you’re disabled or not. By analyzing photographs, Stanford psychology professor Jeanne Tsai found that U.S. leaders are over six times more likely to display “open, toothy smiles” than Chinese leaders. This same smile, what Tsai calls “the sign of American happiness,” also appears more frequently in American children’s stories and women’s magazines than in East Asian counterparts. “A lot of immigrants have talked to me about how exhausting it is being in the United States,” she told NPR reporter Maiken Scott of The Pulse, “because you have to smile all the time.” 

But the stakes of that performance are higher for disabled people and their caregivers. Princeton ethicist Peter Singer has kept his job even after arguing that parents of disabled babies should have the right to kill their kids. Because people with disabilities cause too much suffering, he says. 

The birth of a child is usually a happy event for the parents. …  It is different when the infant is born with a serious disability. Birth abnormalities … turn the normally joyful event of birth into a threat to the happiness of the parents and of any other children they may have.

Parents may, with good reason, regret that a disabled child was ever born. In those circumstances, the effect that the death of the child will have on its parents can be a reason for, rather than against, killing it.

Singer, whose book Practical Ethics is in its third edition, at one point suggests that his argument about murdering babies applies to disabilities that make a child’s life “so bleak” that it’s “not worth living.” (How would anyone determine a life “not worth living”? And who gets to decide such a thing?) But then he argues that hemophiliacs too could be justifiably killed in infancy because a woman will only have so many children, and the hemophiliac child might prevent her from having another, healthier baby. “It is … plausible to suppose that the prospects of a happy life are better for a normal child” than for a hemophiliac, he writes. 

I think of my college roommate, a gregarious extroverted gay man who competitively roller skated and also had hemophilia. While he blasted Latin pop through our kitchen and danced with joie de vivre and sang into a spatula, I, the “normal” non-hemophiliac person, brooded in my room to the tune of melancholy female artists like Tori Amos, while writing poems about romantic angst. Certainly, disability doesn’t determine happiness. 

What I didn’t realize until having Fiona is that if a person is intellectually disabled, a parent’s feelings often become a barometer for their kid’s worth.

But the bigger issue is this: Why should a person’s happiness — or lack thereof — be used in proving their right to live? And it’s not just Singer who delivers this message. Here’s disabled writer Nancy Mairs on the subject, from “On Being a Cripple”: “In our society, anyone who deviates from the norm had better find some way to compensate. Like fat people, who are expected to be jolly, cripples must bear their lot meekly and cheerfully. A grumpy cripple isn’t playing by the rules. Early on I vowed that, if I had to have MS, by God I was going to do it well. This is a class act, ladies and gentlemen. No tears, no recriminations, no faint-heartedness.” 

You’ll hear parents of kids with disabilities negotiate this pressure to be happy all the time when they describe their children. “He has Down syndrome, and he’s nonverbal,” a father will say, “but he’s happy!” Or a mother will say, “She has cerebral palsy, and she doesn’t walk, but she’s brought us so much joy!” We can’t fault the parents. They add this caveat of happiness because they know it carries necessary currency. 

But this can be exhausting. It turns happiness into a rhetorical strategy, and makes the faces of disabled people and their caregivers a walking argument that should never have to exist in the first place. 


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* * *

During Fiona’s second year, I started a blog called Star in Her Eye. I wrote it because my child’s eyes were bursting with divine luminescence, and yet an unsmiling pediatrician called her a “bad seed.” I wrote the blog because parents at playdates were talking about babyproofing their outlets, and I was talking about the interesting sculptures at the cardiac unit of the children’s hospital. I wrote it because my girl was coming up with ingenious ways to communicate despite her verbal limitations, and yet because she didn’t babble, an early interventionist declared her “at zero.” I was in a very different field of parenting than the baby books described, and I needed to find my people. I also needed to write about ableism — how I was encountering it, how I was exhuming it from myself. A deep and abiding ethics guided my decisions about what to write and how, but I always wore the weight of my words. Tell too much of a certain kind of a truth, and I could risk further deepening the pervasive story that kids like mine were the B word: burden. 

In December 2015, three years into the blog, the disability-themed online venue The Mighty published a satirical article called “Introducing: Meltdown Bingo.” In it, an autistic parent of an autistic child used a bingo card meme to make light of her son’s meltdowns. Readers were rightfully outraged, blasting the article for objectifying a kid’s suffering. (It was eventually taken down.) Critics also noted The Mighty’s slant toward publishing, as blogger Savannah Logsdon-Breakstone put it, “warrior mommy blogger content … focused on bemoaning how hard it is to parent a child with a disability. … This is a dangerous narrative.”  

The outrage fueled important conversations about disability representation (#CrippingTheMighty). But articles also popped up admonishing parents for writing about their kids at all. In an article published soon after, the advocacy website Ollibean suggested that parents should not write about their children if they aren’t able to offer consent, a principle that would eradicate the stories of certain intellectually disabled people, pushing them and their caregivers — disproportionately women — to the unwritten, invisible margins. During the years that I wrote the blog, Fiona could not offer me consent, and one of the things I often wrote about was our very efforts to help her communicate so she could loudly disagree with me. But that took time — many years with therapists and a speech device.

The challenges of parenting a disabled child — “the prejudice and ableism, fighting systems for an equal education, equal and accessible medical care, accessibility, insurance coverage for a new wheelchair or communication device,” the Ollibean article noted — are injustices built into a system that needs to change. This is 100% true. But the quote fell under the subheading, “It’s Not Your Disabled Child, It’s the System.” In other words, parenting a kid with disabilities isn’t ever hard because of the inherent difficulties of a disability. 

It was not hard, for instance, taking my infant daughter to a swallow study (to make sure she wasn’t dying from her own spit) and two kidney reflux exams (to make sure these vital organs weren’t at immediate risk of failure). It was not hard spending four years helping her learn to walk, or three years helping her tiny, fine-motor-limited fingers navigate a robust communication device so she could tell us what she wanted to eat. Likewise, it was not hard when my husband and I hovered over her body as she jerked in convulsions, her eyes pried open by erratic brain synapses, and it was not hard to check the clock while we did this. More than five minutes, and a seizure can cause brain damage. 

Of course it was hard. Or, it was not hard because hard is the word we use to describe cellophane-wrapped candy, while this is blade-sharp, a knife slicing through the gut. 

But if we can’t say it was hard, then how can we affect any change that would help people in power understand what kind of support we might need?

And yet, if I do say it was hard, then I am fueling, as Logsdon-Breakstone put it, “a dangerous narrative.” I’m risking the chance that people will see my kid, my glorious beautiful curly-haired feisty stubborn rascal of a kid, and think, That mom’s unhappy; that kid’s life is tragic

Tell too much of a certain kind of a truth, and I could risk further deepening the pervasive story that kids like mine were the B word: burden.

My facial expressions out there are territory over which ideologies are fighting. My emotions out there have rhetorical power. And I will use everything I have to argue that my kid’s life has equal value to anyone else’s.

So I’ve smiled. Especially in those early years, I smiled at the nurse who called my kid’s name in the waiting room. I smiled as she led us to a room for X-rays. How cute, she said to my 38-inch 5-year-old in purple hospital jammies. I smiled after I unfolded Fiona’s walker with a loud click at the library, eliciting stares, and I smiled while the teacher talked me through Fiona’s low report card scores. 

It wasn’t a conscious thing, the smiling, until I read my friend’s story while sitting in the forget-me-not-wallpapered bathroom. But when happiness becomes a rhetorical move, it’s a lot less fun than regular happiness. “The freedom to be happy,” writes Sara Ahmed in The Promise of Happiness, “restricts human freedom if you are not free to be not happy.”

* * *

In “Special Olympics and the Burden of Happiness,” Lawrence Downes of the New York Times argues that Special Olympics doesn’t give itself the freedom to be unhappy either. Downes describes the hours-long medal ceremony at the 2015 World Games as a “cascade of triumphant moments” and a “carefully thought-out strategy” where music swells and the crowd cheers as athletes receive their awards. According to Downes, the organization intentionally uses joy as a rhetorical strategy to advocate for the healthcare, education, and other rights of people with intellectual disabilities. The article acknowledges the global plight of people with intellectual disabilities, many of whom are denied an education, sequestered in institutions, and suffer abuse and neglect. If Special Olympics is trying for a revolution of sorts, “its revolution is televised, happily,” writes Downes, “on ESPN.”

But Downes subtly critiques the efficacy of this strategy, calling Special Olympics “an organization so good at making its athletes and the public happy, so bursting with good will and smiles, that nobody has to take it seriously. It has waged a nearly 50-year battle for inclusion and acceptance for people with intellectual disabilities, and people still think it’s a track meet.”

In March 2009, President Obama told Jay Leno of The Tonight Show about his recent bowling score of 129. “It was like Special Olympics or something,” he said with a laugh. Before the show even aired, he was on the phone, apologizing to chairman Timothy Shriver. According to Shriver, Obama invited the athletes to the White House to school him in the sport and “help him improve his score.” If the silence in news reports is any indication, the match never happened.

* * *

Our bowling match did happen. I eventually wiped my tears and left the in here space of the forget-me-not bathroom. I drove my kids to the bowling alley, parked the car in a blue-painted spot, and hung the handicapped placard on the rearview mirror. One by one, I hauled my kids out of their car seats. I held their hands as we crossed the parking lot. I opened the glass door for them, and in they walked. Right through the door.

When we got into the lobby, my heart sank: The lanes about 50 meters ahead were dark like a nightclub. Red and blue and yellow laser beams flashed across the floor, the ball returns, the scoreboards, and the seats. Pop music blasted from above.

From the shoe rental desk, my friend Kristy, Fiona’s godmother, came to us with a worried expression. “I’m sorry,” she shouted over the music. “They just turned them on.”

I exhaled. Kristy had called in advance to be sure, and the guy on the other end had said no, they didn’t do laser bowling during the day. 

I paused, standing near the entrance, trying to figure out what to do. “It’s not like she’s had seizures from strobe lights before,” I said, recalling the EEG where a technician flashed a light in Fiona’s face and measured her brain waves. “It’s just … it’s a risk.” Further inside, I watched the laser lights spin around, casting erratic, broken-up rainbows. New seizure triggers can emerge without warning in people with Wolf-Hirschhorn syndrome.

We rented our shoes and paid for a lane. The red and blue and yellow beams swirled around us. Miley Cyrus blared. “You wanna go first?” Kristy shouted two feet from my face. Any farther and I wouldn’t have heard her. Her teeth glowed white from the blacklight. I went after Fiona, who was toddling down the lane, ready to walk its length. The bottoms of her Converse sneakers glowed. 

The place was mostly vacant. Had anyone seen us in the dark, they would have seen two adults and two kids having a leisure afternoon. They would have seen the adults center a kiddie ramp at the top of the lane and help the kids push their balls down the ramp. They would have seen the balls make their slow-rolling treks toward the pins and knock a few down. Yay! the onlookers would have heard Kristy and me say as we clapped. The kids sometimes clapped too, and sometimes turned around unfazed, heading for another spot in the darkness.

These onlookers probably wouldn’t have seen my furrowed brow, or my eyes, straining in the dark, to assess whether my daughter was having myoclonic blinks or jerks. They wouldn’t have seen me silently curse this bowling lane for turning a fun outing into a shitty, stressful event. 

Neither would they have seen Fiona seize, because — thank God — she didn’t. And they probably would not have seen me smile much, either. But if I had smiled that day, it would have glowed bright as an incandescent bulb. 

* * *

In the summer of 2020, I published a memoir, Raising a Rare Girl. How could I write a book about Fiona that avoided the trap of the “my kid’s so happy” narrative? Because it turns out, my kid is happy — often exceedingly so. Fiona, now age 9, has way more joie de vivre than me. Though not yet a swimmer, she plows her body into ocean waves and screams with delight. She yawps for joy at the mention of Kit Kats. She is really, really stoked to go for walks around the block. She and my old college roommate would get along smashingly. And yet a story that emphasizes the “look, my kid is happy!” narrative would lodge her right into the very pressure Nancy Mairs identifies: “In our society, anyone who deviates from the norm had better find some way to compensate.” 

And how could I write a book that also avoided the “my kid is so hard” narrative? Because that’s true, too.

I tried to write a book that showed my daughter’s inherent value — and our culture’s denial of it — whether she was happy or not. I ended up writing a book about what it means to be human. “This belief in the virtue of the ‘happy’ and suffering-free life sterilizes and shrinks us,” I wrote toward the end, “minimizing what makes us most beautifully human: our tenderness, our vulnerability, the profundity of our capacity for heartache, the risks of which deliver us into immense joy.” What I tried to do was show, honestly, the joy and the grief, the hard and the beautiful, and say: It all belongs. 

* * *

You ask: Am I happy? I say, sometimes less than before. Because she wakes six times a night. Because regular trips to pediatric specialists are no strolls through the park. Because special educators sometimes see her as broken, in need of fixing. Because her needs often exceed my energy. Because every time I’ve hovered above her convulsing body at night, counting the minutes, I might have gained something like courage or “life experience,” but I also felt gashed  in a bodily place that I can’t find, I can’t name. 

Because loving someone has never been so hard.

You ask: Am I happy? And I say, sometimes ten times more than before. Because her fine, blondish-brown hair brushes my cheek when we snuggle. Because her sapphire blue eyes seek out mine every day. Because at age 5, after three years of speech therapy, she at last made a hard C sound. Come, she said, and I did. Because when she was 4 and I asked which hat she wanted to wear, this one or that, she pointed and said “gamma!” (meaning “that one”) with such high-pitched glee that it felt like I held not a red wool ski cap but a lifetime supply of joy. Because the stress of a swallow study, the labor of an orthopedist’s appointment, and the fear of EEG results make the good news of a clear airway, an unchanged scoliosis curve, and an unworrying set of brain waves all the more glorious. 

Because loving someone has never been so hard.   

What I ask is that my answer doesn’t matter in determining her worth.

* * *

Heather Lanier’s memoir, Raising a Rare Girl, was a New York Times Book Review Editor’s Choice. Her recent essays appear in The Atlantic, The Wall Street Journal, and Off Assignment. She is an assistant professor of creative writing at Rowan University. You can find her on Instagram at @heatherklanier

Editor: Cheri Lucas Rowlands

Illustrator: Ashanti Fortson

Fact-checker: Nora Belblidia

The Top 5 Longreads of the Week

This photo taken on June 4, 2019 shows a facility believed to be a re-education camp where mostly Muslim ethnic minorities are detained, north of Akto in China's northwestern Xinjiang region. - As many as one million ethnic Uighurs and other mostly Muslim minorities are believed to be held in a network of internment camps in Xinjiang, but China has not given any figures and describes the facilities as "vocational education centres" aimed at steering people away from extremism. (Photo by GREG BAKER / AFP) / TO GO WITH AFP STORY CHINA-XINJIANG-MEDIA-RIGHTS-PRESS,FOCUS BY EVA XIAO (Photo credit: GREG BAKER/AFP via Getty Images)

This week, we’re sharing stories from Ben Mauk and Matt Huynh, Katie Engelhart, Devon O’Neil, Ariel Saramandi, and Tananarive Due.

Sign up to receive this list free every Friday in your inbox.

1. Inside Xinjiang’s Prison State

Ben Mauk, Matt Huynh | The New Yorker | February 26, 2021 | 28 minutes (7,000 words)

“Survivors of China’s campaign of persecution reveal the scope of the devastation.”

2. ‘We Are Going to Keep You Safe, Even if It Kills Your Spirit’

Katie Engelhart | The New York Times | Februaary 19, 2021 | 15 minutes (3,794 words)

“For the millions of Americans living with dementia, every day during this pandemic can bring a fresh horror.”

3. The Final Descent of Dean Cummings

Devon O’Neil | Outside | February 22, 2021 | 44 minutes (11,327 words)

“‘This isn’t a tale of savagery,’ said former H2O lead guide turned Cummings nemesis Will Spilo. ‘This is a tale of mental illness.'”

4. Death Takes the Lagoon

Ariel Saramandi | Granta | Febuary 8, 2021 | 16 minutes (4,066 words)

“Ariel Saramandi on the sinking of the MV Wakashio off the coast of Mauritius.”

5. “Dr. Lecter, My Name Is Clarice Starling”

Tananarive Due | Vanity Fair | February 23, 2021 | 19 minutes (4,811 words)

“The movie is so scary because it seeps into people’s consciousness through fears. It really works on fear more than anything else.”

Binders Full of Men

Jennifer Berney | The Other Mothers: Two Women’s Journey to Find the Family That Was Always Theirs | Sourcebooks | February 2021 | 18 minutes (4,976 words)

 

Becoming Family,” Jennifer’s 2019 essay exploring traditional notions of heredity and paternity, is a nice companion to this piece.

A manila envelope from the country’s largest sperm bank arrived in my mailbox only three days after I had called to request it. I tucked it under my arm and looked around me before returning to my front porch, as if one of my neighbors might catch me—as if there were something forbidden inside. I sat on the step and ran my finger through the envelope seam to unstick the glue. California Cryobank, the catalog said at the top, in white letters on a royal blue background. My wife Kellie and I had already spent months trying to line up a community donor, but no one had come through with a yes. In contrast, this thing in my hands had come to me so easily. I had asked for it and, with the snap of a finger, there it was. Below the company’s name, there was a photograph. I’m not sure what I had expected—maybe a classic image of a baby growing in utero, maybe a mother looking into the eyes of her newborn child. But this photo featured two teenage boys wearing backpacks and smiling at the camera. They stood beneath a tree. It looked like an image I’d expect to see on a college brochure.

Kellie pulled into the driveway with her window rolled down. “Hey, lady,” she said and stepped out of her truck.

“Hey,” I said. My heart sped. I wanted to show her the catalog, but I didn’t want to overwhelm her. I tried to hide my grin.

Kellie sat down next to me. “What’s that?”

I handed it to her. “It’s from that sperm bank in California,” I said. “I called them.”

Kellie didn’t open it. She just held it in her lap.

I reached over and laid a finger on one of the faces on the cover. “Who is this supposed to be?” I asked her. “Are these the babies, all grown up?”

Kellie cocked her head and looked at me to make sure I was serious. “They’re the donors,” she said.

Shit. She was right. My excitement for the packet fizzled. These boys weren’t what I had in mind. Whoever designed the cover must have hoped to convey that these were young men at the peak of their health, but all it highlighted for me was that many of these donors were too young to be making decisions of permanent consequence. They looked like boys, not men. Staring at the picture made me think of factory farming, of dairy cows hooked to milking machines, of chickens dropping eggs in chutes. Were these boys ready to commit to a lifetime of knowing there were children out there that they had helped create? I suspected that most of them just wanted the money for textbooks or beer.

Kellie lifted herself from the step to go inside. I propped the catalog on my knees. Moisture from my skin condensed on the back cover. I flipped through the pages aimlessly, my hope dim.

* * *

My position on sperm—my insistence that a sperm bank was our best and easiest option—was in part based on an assumption I had held since childhood when I first learned of the existence of assisted reproduction. I assumed that the fertility industry wanted to help me, that sperm banks had been designed with lesbians in mind.

I understood that straight couples and single women used sperm banks too, but I had always figured that lesbian couples would make a large share of their clientele, that sperm banks would welcome us, and that our needs would be built into the design of their operation.

I was wrong about this. Sperm banks were not designed for lesbians.

California Cryobank, one of the first commercial sperm banks, opened in 1977 with a very specific purpose: to offer men a way to store their own sperm for future use. This meant that, for instance, a man undergoing treatment for cancer could store vials of semen before starting chemo and radiation, and in doing so could hang on to the option of fathering children someday. Sperm storage was originally envisioned as a niche market for men, available mainly as a safeguard against future infertility. Male sterility, the founders believed, had the potential to be psychologically “shattering”—devastating to a man’s ego.

Few were talking about male infertility as a widespread phenomenon. “Barren” was—and still is—a term applied only to women. Male infertility was seen as so profoundly emasculating that doctors barely mentioned it, even to each other. In the era predating the commercial sperm bank, if a couple had no luck conceiving a child, and if the microscope revealed that the husband’s lack of sperm was at fault, doctors simply recruited one of their male students or staff to donate fresh semen. Sometimes the doctor himself was the secret donor. The arrangement was casual. In many cases, there was no documentation or paperwork. No STD testing. No legal safeguards. No washing, freezing, or quarantining. Just sperm from a source that would always be anonymous to the couple that received it. The prevailing attitude was: Just fix the problem. The less said the better. This approach allowed the husband and wife to carry on as if they’d conceived the child unassisted. Many couples never spoke of the procedure again and never told their children.

It’s worth noting that both this hushed approach to donor insemination and the vision of preemptive sperm banking centered the male experience and ego. It took some time for established sperm banks to identify and fill what now seems like an obvious role: to provide a menu of options to straight couples in need of donor sperm. It took even longer for physicians to cede control and retire the practice of recruiting their own donors.

Commercial sperm banks adapted to help propagate more traditional families—to replace one man’s nonviable semen with another man’s viable semen, and in doing so, fulfill the promise of the normal: a husband, a wife, and children—the American nuclear family.

I assumed that the fertility industry wanted to help me, that sperm banks had been designed with lesbians in mind.

As I was coming of age as a lesbian and considering my future, it had never once occurred to me that the medical industry could legally withhold services from me or anyone else, that they could say yes to straight couples and no to queers, but in fact they did just that. Most sperm banks and fertility clinics turned away any woman who wasn’t conventionally married. Sperm banks weren’t made for lesbians.

It turns out lesbians didn’t need them. Instead, while sperm banks were growing, lesbians were developing networks to support each other. The idea that lesbians could become parents on their own terms was, at the time, revolutionary and connected to the larger feminist goal of giving women full control over their reproductive health. Lesbians and allies organized groups for queer women who wanted to become parents, either as partners or single mothers. They passed out instructions on how to perform inseminations with turkey basters, diaphragms, and needleless syringes. They found clever ways to source sperm.

One way completely avoided any doctor’s office. Several mothers of now-grown children have explained to me how it worked in Seattle in the 1980s.

If you were a lesbian who wanted to get pregnant by an anonymous donor, you needed to find yourself a go-between, a friend who would make things happen for you. The go-between would ask around and find a donor—often a gay man in the larger community. The donor could be a close friend, or a friend of a friend, or a colleague from work. The go-between would know him, but he would be anonymous to the recipient.

In these networks, there was paperwork involved: a survey that asked for basic medical and personal history, not unlike the donor files available to sperm bank clients. The go-between collected this and shared it with the recipients. She kept a separate file with personal information—the donor’s name, his social security number, the recipients he’d been paired with. In theory, this could be shared with the recipient family when the child turned sixteen, and the family could decide if they wanted to track down the donor and contact him. In practice, this exchange didn’t always happen quite like that. Through the course of the interviews I conducted, I heard anecdotes about forms being lost due to illness, death, and human error. However, community and memory are living things, and in some cases those who wanted to find their donors could do so by simply asking around.

Hopeful recipients charted their cycles with the same tools I used to chart mine: a basal thermometer, a chart, and a pen. When it was time to inseminate, the go-between was the emissary. She picked up the ejaculate (two women mentioned artichoke jars as the container of choice) and kept it warm as she transported it to the home of the woman who was trying to conceive. At that point the go-between helped, or bore witness, or got out of the way, but her role wasn’t just functional—it was spiritual. Her presence conveyed the blessing of the larger community.

Someone who was a go-between once would likely be a go-between multiple times. She would have a list of men who were ready and willing and who already knew the drill.

As I learned about these networks one generation later, I was amazed by their efficiency and by how many problems they solved. The network system outsourced the difficult legwork of finding a donor to the go-between, a person who, because she lacked direct personal investment, could more comfortably manage those negotiations. If Kellie and I had employed this approach, it would have spared us some pain. We had just spent two months waiting for an acquaintance to decide whether or not he’d be our donor, and he had ultimately ghosted us. If, say, our friend Dee had been our go-between, then the acquaintance could have delivered his no to Dee without feeling the pressure of our hopes. We wouldn’t have been hurt by his no, because we wouldn’t have even known about it. Instead, we would have simply sent our friend on a mission, and we would have heard back from her once she was successful.

What’s more, the network system preserved anonymity while allowing the would-be parents to rest easy knowing the sperm wasn’t coming from an unknown stranger but a community member who had ties to mutual friends. This system was free and spared recipients from having to medicalize the practice of babymaking.

They passed out instructions on how to perform inseminations with turkey basters, diaphragms, and needleless syringes.

Others have told me stories that capture another mode of conception that was common to lesbians in the ’80s: insemination via feminist health center. These centers—connected to the larger women’s health movement—were established and run by women who sought to empower their peers. This was the generation of feminists who got together in groups and learned how to view their cervixes using a speculum, a flashlight, and a mirror.

Olympia, where Kellie and I lived, had one of these centers, founded by a woman whose name is still legendary among locals: Pat Shively. Pat was a lesbian herself and a mother of three children from an early marriage. (It’s worth noting that heterosexual sex—often the byproduct of a youth spent in the closet—is the oldest form of conception available to lesbians.) When Pat opened the Women’s Health Clinic in 1981, she didn’t do so with the vision of helping fellow queers conceive but with the broader mission of serving diverse populations of women. Her clinic offered abortions, and she made herself available at any hour of the day or night to administer rape kits to women who had been sexually assaulted. I imagine that it must have been a small comfort to those women, in a moment where small comforts mattered, to be seen by someone who was capable of hearing and believing them, by someone who knew how to be tender and also how to fight.

Pat’s role as the local abortion provider made her vulnerable to death threats, and she took to carrying a Glock and wearing a bulletproof vest. In the photos I’ve seen of Pat, she has a small frame, short unkempt curls, and she is always actively holding something: a phone, a pen, a small child’s hand.

So, while Pat Shively may not have set out to make a clinic for the explicit purpose of helping lesbians conceive—while it may not have even been part of her original vision—it’s not hard to see how she wound up filling this niche.

Pat’s inseminations were in some ways similar to the informal inseminations that took place in doctors’ offices behind closed doors before the era of sperm banks. But Pat Shively didn’t have a range of male residents to recruit from. Instead, she looked for college-age men who didn’t smoke pot (studies showed that marijuana use interfered with sperm motility) and paid her donors $30 per specimen. By some accounts, she charged her clients $50 for the inseminations. By other accounts, she did it for free. Either way, it’s clear that she wasn’t getting rich on the practice.

In this arrangement, Pat acted as both medical professional and community member, a variation on the go-between. She taught her clients how to chart their ovulation and timed the inseminations accordingly. Since hers was a small-scale operation, her donor sperm was fresh, not frozen, and she often performed the insemination on the recipient’s sofa.

In both of these systems—network-facilitated insemination and women’s clinic insemination—family-making became a community act not limited to a bedroom or a clinic. Instead, they combined, to varying degrees, personal and clinical elements: the living room couch as the site of insemination, the needleless syringe as the conduit, the friend or partner as the inseminator, the documents that may someday be lost. Both methods centered the humanity of the recipient and allowed her to feel she was the agent rather than the patient.

And, in both of these scenarios, sperm was mainly a means to an end. Between the go-betweens and the recipients, between the clinician and her clients, there was sometimes discussion about what health issues they wanted to avoid or what aspects of someone’s ethnic or religious background they might prefer their donor mirror. Parents-to-be often sought donors who shared their religious or ethnic heritage. But in general no one had the leeway to insist on blue eyes, or a certain height, or an engineering degree, and it seems that no one obsessed over these details. The attitude that drove these systems was that DNA mattered a little, but not a lot. For the most part, women wanted to make a baby, and they wanted sperm from a donor who was reasonably healthy. That was all.

And, in both of these scenarios, sperm was mainly a means to an end.

Contrast this approach with that of the typical sperm bank customer in our current climate. Today’s commercial sperm banks exclude potential donors not just for issues like low sperm count or heritable diseases, but also for height (donors that are five foot eleven and over are strongly preferred, and many banks won’t accept donors who are under five-nine) and weight. Gay men, who were so essential to the lesbian insemination networks of the 1980s, are to this day effectively banned from donating at all commercial sperm banks—a policy that is ostensibly to protect recipients from an increased risk of HIV, but makes little sense when one considers that all donors are tested and retested over a six month period while their sperm is quarantined and that there are no bans on other high-risk sexual behaviors. Straight men can engage in unprotected anal and vaginal sex with multiple female partners and still qualify as donors, while gay men—even those in long-term monogamous relationships—need not even apply.

Most banks actively recruit on college campuses and require their donors to prove that they have earned, or are in the process of earning, a degree from a four-year college, and some banks charge an extra premium for sperm from donors with an advanced or Ivy League degree.

Sociologist Amy Agigian points out that clients are the ones demanding this approach, citing a study where women “placed the highest value on the sperm donor’s education, ethnicity and height.” Agigian goes on to point out that any belief that a donor’s college education is somehow “transmissible through a man’s semen is further evidence of magical thinking about semen that abounds in our culture.”

To put it another way, sperm banks aren’t simply optimizing their samples for the potential child’s future health. They are optimizing to meet demands for children who will conform to societal norms around race and attractiveness. What’s more, they are selling a myth that an advanced degree confers heritable traits, that the Ivy League can be encoded into a child’s DNA.

Lesbians are now among the consumers driving these demands, and yet I can’t help but think back to the early days of lesbian low-tech inseminations and how, for the most part, they were driven not by eugenic ideologies but by personal connections. When it came to alternative insemination, lesbian recipients weren’t focused on making genius babies or maximizing genetics. They simply wanted families, reached out for community support, and received it.

I didn’t know any of this as I sat on my front porch, holding the Cryobank brochure. I didn’t know it, but for the first time, I sensed that Kellie wasn’t wrong—that buying sperm was complicated, that it was fraught with ethical dilemmas, and that the story behind the sperm we were getting was actually a story that mattered.

* * *

That night, as Kellie slept, I went online. When I Googled “sperm bank,” California Cryobank topped the list, and the rest of the first page was filled with companies that looked nearly identical to the brochure I’d already viewed. Their web pages featured chubby, smiling babies, welcomed by straight couples who looked more like J. Crew models than actual families.

I tried variations. “Sperm bank small” and “sperm bank gay friendly.” I didn’t get anywhere. With each search, the same corporations showed up. It was just before midnight when I finally added the word lesbian to my search and, bingo, the top result linked to a website that featured a woman, alone, holding a baby. She wore a hooded sweatshirt and a loose ponytail; she looked less like a J. Crew model and more like a person I might actually know in real life. Just above the picture was the tagline: “A trusted resource for women planning alternative families.”

Pacific Reproductive Services, it turned out, was a lesbian-centered cryobank founded by Sherron Mills in 1984. Mills, like Pat Shively in Olympia, had been helping lesbians get pregnant out of a community-run clinic. But as demand for inseminations grew, and as the AIDS crisis swelled, Mills wanted an actual donor insemination program that would meet FDA standards—no more fresh ejaculate on demand from a couple of handy donors.

The issue with mainstream sperm banks, as Sherron Mills saw it, wasn’t just that they refused to serve lesbians. Mills also believed that lesbians deserved medical care tailored to their specific needs. In a world where the medical model so often assumed heterosexuality, lesbians deserved a place where they could be at the center of the practice, not floating on the periphery.

Over twenty years later, I hadn’t known I would need this. I had expected, always, that so long as I lived in a progressive community, I’d be effortlessly folded into the larger system. But here I was, already longing for inclusion, seeking a place that had been designed with me in mind.

In a world where the medical model so often assumed heterosexuality, lesbians deserved a place where they could be at the center of the practice, not floating on the periphery.

As I clicked through the site, I learned that PRS was a comparably small operation and that, besides their alternative demographic, they distinguished themselves from larger commercial sperm banks by offering a catalog of what they called “willing to be known” donors.

“Willing to be known” didn’t mean what Kellie would have wanted it to mean. We couldn’t take these guys out for coffee and interview them about their life histories and their politics. We couldn’t even learn their names. But they did come with a promise—an unenforceable promise—that when our future child turned eighteen, they could access their donor’s name and contact information. It struck me as uncomfortable—a little scary even—that my child upon turning eighteen could make a call and add a stranger to our family. But in other ways it seemed preferable to a closed-door policy, our baby’s DNA a mystery that could never be unlocked. My personal stance on secrets was this: I only liked the ones that included me.

I didn’t know it at the time, but the “willing to be known” program was a variation on the Identity Release Program, which was developed and trademarked by the Sperm Bank of California in 1983. Today, in the era of DNA testing, all major sperm banks offer a similar open identity option, and many argue that it’s unethical to offer donors the anonymous option, since it is likely that any donor can now be tracked down, with or without their consent.

PRS was based in San Francisco where, coincidentally, I would be traveling soon. In just a few weeks, my mother would be attending a work conference there, and I planned to join her to visit a city I’d never seen before and eat good food, walk through neighborhoods, and shop for books.

Oh, and visit a sperm bank. Is that something people actually do? I wondered. I recognized the feeling of getting swept up in my own excitement and leaving my level head behind. I tried to talk myself down. There was no reason to make sperm the focus of the trip. Before this moment, I had been looking forward to San Francisco as a distraction from all of this. As I climbed into bed and spooned against Kellie, I could hear my own pulse where my ear pressed against the pillow. People typically ordered sperm online, I told myself, trying to settle my brain towards sleep. There was no real reason for an in-person visit. Certainly I shouldn’t let it become the focus of my trip. Maybe I wouldn’t even visit it while I was in town.

* * *

“I’m thinking of visiting a sperm bank while we’re here.” I said this within ten minutes of greeting my mother in the hotel lobby. Within an hour, we were searching for the address on a map. She wanted to come too. Her eagerness fed my own.

My mother, when traveling, resembled Big Bird; already tall, she seemed to gain another two inches and hover above any crowd we moved through, taking in the sights with a kind of transparent awe. Like Big Bird, my mother was trusting and curious, and would start conversations with anyone we came into contact with. By this, I don’t just mean that she made small talk with the hotel clerk or the cab driver, although she did. But I mean that she also sought chances to chat with the family standing outside the native plant exhibit and the couple seated at the neighboring table.

The sperm bank was less than two miles from the hotel where my mother and I stayed. Together, we walked through a neighborhood of restaurants and bookstores, and then took a left down a hill and descended into a district that was gray and industrial. I kept my eyes fixed on the numbers, and stopped when I spotted the address, 444 De Haro Street, outside a monstrous building built of concrete, glass, and steel. It was a Friday afternoon, and there was no one in sight, though the corridor was vast, with high ceilings and potted palm trees. I felt like an interloper in the corporate world, snooping around with my mother, looking for sperm. I was afraid that a roaming security guard might stop us and ask what we were doing.

But eventually I found it, up one flight of stairs and tucked around the corner. Inside Suite 222, the decor changed dramatically, from bank lobby to massage therapist’s office. The hall smelled of essential oils, of lavender and eucalyptus. A long-haired receptionist sat just beyond the entrance and greeted us. In an effort to keep my mom from talking first, I introduced us right away. “I called last week about visiting,” I explained. “I’ve been trying to settle on a sperm bank, and I just figured since I’m in town—”

“Of course,” she said, nodding. “You might want to spend some time in there,” she suggested, indicating a private room that featured houseplants, a round table, and two wicker chairs with floral-print cushions. “That’s where we keep the donor profiles.” She explained that there were two special binders that held childhood photographs of every willing-to-be-known donor. Each photograph had a number that corresponded to a profile in a separate binder. “Settle in, take as long as you want, and let me know if you have any questions.”

I reached for one of the photo binders first, and my mother took the other. They were wide three-ring binders stuffed with crisp sheets of plastic that shined beneath the light. Each page held two photos, one above the other. On blank sticker labels, someone had handwritten each donor’s number. Some of the photos featured newborn babies, red-faced and swaddled in blankets. Those weren’t so helpful. Others were school-issued photos from first or second grade. They had big smiles with missing teeth, or corduroy jackets, or Afros.

My mother and I sat side by side, studious. Each time one of us turned a page, there was the soft sound of plastic unsticking. Occasionally my mother would chuckle and tap my arm. I’d crane my neck to view her binder. Her choices were different than mine: boys with tidy hair, bow ties, and sparkling teeth. I liked the boys with the shaggy hair and awkward smiles.

What struck me about the binders was this: throughout my twenties I’d been paying attention to my feelings about individual children. Though I liked children in general, and though I was sure that I wanted to have my own, there were plenty of kids whom I could take or leave. They were the boys with buzz cuts and truck T-shirts who begged for toy guns at Target or the girls in faux-fur coats belting out pop songs I barely recognized. Certainly these children were adorable to someone, but they sparked nothing for me. There were plenty of adults I had no interest in or didn’t connect with. Why should kids be any different?

Then there were the kids I wanted to take home with me, the girl with long brown hair and freckles who leaned off the side of her father’s shopping cart. Or the boy with the wide eyes and gap between his teeth who drew pictures while waiting for his food to arrive in the restaurant. After recognizing one of these kids, I always told myself: my kid will be one of the loveable ones. As I looked through the binder of photographs, I had an instantaneous reaction to each one. Some of the photos didn’t interest me at all, but others tugged at my heart. It may have all been an illusion—a crooked bow tie or a Snoopy shirt may have signaled to me, erroneously, that this child felt like kin. The photographs in all likelihood could not predict how I would have felt about the donor as a grown man. But even if my intuitions were illusions, I appreciated them. The photos gave me a sense of control, a sense that I was choosing a person rather than a number.

I felt like an interloper in the corporate world, snooping around with my mother, looking for sperm.

My mother lost interest in the photographs eventually and let herself out of the room. As I pored over donor questionnaires that matched some of my favorite photos, I could hear her chatting with the receptionist, explaining that I had a partner, Kellie, who lived with me in Olympia. “You must get quite a few lesbian couples here,” she said. When she began offering the details of our lives, I hurried to join my mother at the desk.

As I approached, my mother put her arm around my waist. “I was telling her about your situation,” she said. I felt my cheeks grow hot.

The receptionist laid her hands on her desk, as if she had no other tasks to attend to. “Do you have any questions I can answer?” she asked me.

I had just one. I wondered where their donors came from. “Are they all in college?” I asked.

“We get some college students,” she said. “But, actually, we advertise on Craigslist. That’s how most of our donors come to us.”

I let out a laugh. I wasn’t quite sure what to do with this information, that the sperm at this clinic came from the place I associated with free couches and unwanted cats. It seemed that I could have chosen to be troubled by this. But, more than anything, I liked it. I liked the idea the donors were invited rather than recruited, that the call for them went out to the community at large.

“We get a better range of donors that way,” she explained. She was right—from the profiles I’d looked at, most of them listed actual professions rather than majors; I’d seen a doctor, a fireman, an electrical engineer.

That night, in the hotel room, my mother and I each sat on our own bed, each with a bedside lamp on, reading. As she read the book she brought, I spread open the folder that the receptionist had sent me home with. The files didn’t contain much information that was new to me. There was a FAQ page, a handout on how to chart your cycles, and some specifics on shipping and ordering, but I read every word carefully as if I were studying blueprints for a home I would soon build. 

This chapter has been adapted for publication on Longreads.

* * *

Jennifer Berney writes to explore the human state of longing. Her essays have appeared in Tin House, The Offing, Brevity, The New York Times, The Washington Post, and many other publications. You can find her on Twitter at @JennBerney.

Editor: Cheri Lucas Rowlands

The Top 5 Longreads of the Week

This week, we’re sharing stories from Elizabeth Weil, Amirah Mercer, Jason Motlagh, Esmé E. Deprez, and Michael Paulson.

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1. The Climate Crisis Is Worse Than You Can Imagine. Here’s What Happens If You Try.

Elizabeth Weil | ProPublica | January 25, 2021 | 17 minutes (4,374 words)

“A climate scientist spent years trying to get people to pay attention to the disaster ahead. His wife is exhausted. His older son thinks there’s no future. And nobody but him will use the outdoor toilet he built to shrink his carbon footprint.”

2. A Homecoming

Amirah Mercer | Eater | January 14, 2021 | 23 minutes (5,810 words)

“The imagery of veganism propagated by the wellness industry erases the long — and often radical — history of plant-based diets in the Black diaspora.”

3. Highway to Hell: A Trip Down Afghanistan’s Deadliest Road

Jason Motlagh | Rolling Stone | January 22, 2021 | 28 minutes (7,027 words)

“The $300 million Kabul-Kandahar road was meant to be a symbol of the new Afghanistan. Today it reveals everything that has gone wrong in America’s longest war.”

4. How I Helped My Dad Die

Esmé E. Deprez | | January 27, 2021 | 22 minutes (5,600 words)

“His body wrecked by ALS, my father insisted that his death, like his life, was his to control.”

5. ‘Moulin Rouge!’ Was Their Ticket. Then 2020 Happened.

Michael Paulson | The New York Times | January 21, 2021 | 18 minutes (4,540 words)

It was a smash Broadway hit, then 25 company members got sick and the shutdown put everybody out of work. An oral history of a tumultuous year.

I Will Always Love You: A Dolly Parton Reading List

Dolly Parton attends the 61st Annual GRAMMY Awards at the Staples Center on February 10, 2019, in Los Angeles. (Photo by Axelle/Bauer-Griffin/FilmMagic via Getty Images)

Central Florida doesn’t do glamour. I know because I was born and raised in Lakeland, Florida, the birthplace of Publix supermarkets and where Ernest Hemingway’s first wife, Hadley Richardson, died in a nursing home. Growing up, my sister Abby and I had a never-named game where we’d see a figure skater, Vanna White, anyone, wearing a pretty dress on television, and then we’d passionately bicker over who got to have the rhinestoned, beaded, or sequined costume. We knew what glamour looked like, and we wanted it. By the time I’d graduated high school, I knew glamour in real life. I’d seen it in person three times.

My high school band competed in an annual competition up in Gatlinburg, Tennessee. Each year, when the music part of the trip was over, we’d go to Dolly Parton’s dinner theater show one night, and spend a day at her theme park, Dollywood. And inside Dollywood, inside Chasing Rainbows, a museum dedicated to telling Dolly’s life story, was my pilgrimage: a collection of Dolly’s rhinestoned, beaded, and sequined costumes, more beautiful and breathtaking than anything I’d ever bickered over in the never-named game of my childhood.

Two years after high school, I moved to New York City and dug my heels into culture shock. Five years in, I got into a Dolly Parton-themed holiday party put on by a fancy New York PR firm. I glided through the night among the well-dressed and well-heeled. I sipped moonshine and peach iced tea with a party-themed name like it was mother’s milk. I danced to Kylie Minogue performing Dolly covers. And I held my head up high all night because I’d long already seen the installation in the front room, a sparkling display of Dolly’s costumes on loan from Dollywood.

I won’t say Dolly Parton changed my life. I’ve only just read her 1994 memoir “Dolly: My Life and Other Unfinished Business,” loaned it to three people, gave it as a wedding present, and have the first and only edition in paperback and hardcover. I recently got the first Christmas album Dolly recorded with Kenny Rogers, “Once Upon A Christmas.” I’m pretty proud of that. I don’t own any Dolly T-shirts or anything like that (maybe I should), I just think she’s a gift to humanity — a living, breathing embodiment of dreams. Maybe you agree, maybe you don’t. Dolly would say, “It’s hard to be a diamond in a rhinestone world.” Maybe she’s not for you, even though she’s for everyone. But, hey, don’t take my word for it.

1. “Outta That Holler” (Sarah Smarsh, Slate, October 2020)

In this excerpt from her 2020 book, “She Come By It Natural: Dolly Parton and the Women Who Lived Her Songs,” journalist Sarah Smarsh describes Parton’s brand of implicit feminism. By harnessing the value of economic agency and sexual power to overcome the poverty that defined her childhood — born the fourth of 12 children, “wearing dresses made of feed sacks” and “dyeing her lips with iodine from the family medicine cabinet for lack of lipstick” — Parton has shaped the person she is today.

She reminds her audiences that, no matter where they came from, everyone can identify with being shamed one way or another, and no one deserves it. Never be ashamed of your home, your family, yourself, your religion, she says, and adoring crowds applaud. One need look no further than her immense LGBTQ following to know that Parton’s transformation from a slut-shamed, talented teenage bumpkin to entertainment superstar contains a universal struggle that has less to do with being Appalachian than with being human. If her presence and the appreciation it instills in people could be whittled to a phrase, it’s “be what you are.”

2. “The Grit and Glory of Dolly Parton” (Emily Lordi, T: The New York Times Style Magazine, November 2020)

The person and brand that is Dolly Parton did not just happen overnight. Emily Lordi provides an overview of Parton’s decades-long career, illustrating how it’s been furthered not by reinvention, but through the reintroduction of Parton and her music, all while Parton herself engages with the times. Lordi first interviewed Parton over the phone, then in person after providing a negative COVID-19 test.

People want her gifts, her glow, her time; and Parton, who, as she says, “loves everybody and wants everybody to love me,” is often happy to oblige. She can’t sit still anyway — and early on in the pandemic, she decided to keep working, as long as her team could do so safely. Last May, she released “When Life Is Good Again,” a song of reassurance that justifies the journalist Melinda Newman’s claim, in Billboard, that, during the coronavirus crisis, Parton seems to have appointed herself America’s “comforter in chief”: “When everything is on the mend, / I’ll even drink with my old friends, / Sing and play my mandolin … And it’s gonna be good again.”

3. “Dolly Parton Steers Her Empire Through the Pandemic — and Keeps It Growing” (Melinda Newman, Billboard, August 2020)

The daughter of an industrious sharecropper father and a musically inclined mother, Parton is a savvy businesswoman whose earliest and latest decisions in the music industry are only the core of her empire. As Melinda Newman writes, “Her legendary body of music is just the start of what makes her Dolly. …”

She sounds surprisingly giddy as she talks about the next chapter of her career as if it’s her first. “I’m touched and honored that I’m still around and that I’m able to still be important in the business,” she says. “I honestly feel like I’m just getting started. I know that sounds crazy but I really feel like I might have a big music career, record career. Who knows?”

4. “Dolly Parton on How to Be More Like Dolly Parton” (Anna Moeslein, Glamour, November 2019)

In an interview with Parton, Anna Moeslein and Parton review “Heartstrings,” a Netflix series in which each episode is based on a different Parton song. They also discuss emotions and Parton’s position on what people can do to bring “a little Dolly in their own lives,” as well as fashion and beauty.

Well, I think it’s always important for us to be allowed to be who we are, all that we are, and appreciate that. And I know being a woman in this world…I’ve always been proud that I was born a woman, and I’ve joked that if I wasn’t, I would have been a drag queen. That’s my favorite line, but it’s probably true. I love being able to express myself, and I want to be seen and appreciated for who I am. So I’ve always appreciated and loved people for who they are. Because we don’t need to all be the same.

5. “Is Dolly Parton the Voice of America?” (Rachel Riederer, The New Republic, December 2020)

Citing Jad Abumrad’s Radiolab podcast (“Dolly Parton’s America”), Parton’s Netflix series, shoutouts from Nicki Minaj and Drake, and even a history course at the University of Tennessee, Rachel Riederer discusses the latest Dolly Parton renaissance. And, given the political landscape of the U.S., Riederer wonders if there’s a place for Parton’s enduring position to sidestep politics — which Abumrad refers to as “Dollitics.”

You cannot talk about sharecropping without talking about politics, and to say more would not be her style. She was not shy about her desire to sell books or to present her life as a fairy tale, and you sell a fairy tale by focusing on the romance and adventures of the rising princess, not the conditions that made her a scullery maid.

6. “Springtime for the Confederacy” (Aisha Harris, Slate, August 2017)

When I mentioned Dolly’s “dinner theater show” above, I was intentionally vague. Despite my setup, I know Dolly is human. And humans are complicated. Dolly’s dinner show seems complicated, too, but really, it’s not. The show, known until 2018 as “Dolly Parton’s Dixie Stampede,” is performed before an arena split into the “North” versus the “South,” where the audience, feasting on a four-course dinner eaten without cutlery, cheers on white-washed narratives of colonization, then the Antebellum South, then a performance competition between the North and the South. As a high schooler attending the show, I sat and watched from the North side, not fully grasping how problematic the programming was. I suppose I could do what Parton did in the Billboard article above: plead “innocent ignorance.” As an adult, I know better.

The last time I saw the show was in 2006. Aisha Harris reviewed the show in 2017, after watching it the same week as Unite the Right, a white supremacist rally, descended on Charlottesville, Virginia. At the rally, a neo-Nazi intentionally drove into a crowd of counter-protesters, killing an innocent woman, Heather Heyer, and injuring others. (The president notably remarked in the aftermath that there “were very fine people, on both sides.”) Harris recorded the experience of the dinner show from start to finish, without holding back.

While the show makes zero mention of slavery, that’s not to say there were no references to the Civil War. The war was alluded to both in the overarching North-versus-South conceit and through details both subtle (the gray and blue color schemes on each side) and blatant: The racing piglets were named after Abraham Lincoln, Ulysses S. Grant, Robert E. Lee, and Scarlett O’Hara. Dolly says that the show is about bringing back “those good old times,” referring to her childhood, but of course she wasn’t around during the days of Grant and Lee.

Harris wrote a follow-up to this piece after the show responded to her initial review, and again in April 2018, when the show dropped “Dixie” from its name.

7. “Living with Dolly Parton” (Jessica Wilkerson, Longreads, October 2018)

Jessica Wilkerson, who grew up in East Tennessee, where Dollywood is located, confronts the worldviews of her upbringing with those acquired as an adult after moving away from home for graduate school in New York. Weighing the socioeconomic implications of Dollywood’s hiring practices and confronting “Dolly Parton’s blinding, dazzling whiteness,” Wilkerson strikes a reluctant balance, compartmentalizing more than one version of Dolly Parton.

But the aftermath of Dollywood left me low-spirited. I was nestled into a cozy room in the log house my dad built on top of a ridge, where we lived. From the peak of that ridge, I could stand and see the Smoky Mountains, where Dolly Parton grew up and where she built a simulacrum of her mountain childhood. Hers felt more real than mine. I was sad, but jealous, too. I lived in the real world of Appalachia. A world of layaway stores and packaged foods, bleary-eyed workers and stressed-out mothers. I longed for the simulation.

Alison Fishburn is an American writer living in Paris, Ontario.

The Top 5 Longreads of the Week

WASHINGTON, DC, JANUARY 9: Two National Guards are seen through the fence where roses are left and which now now surrounds the US Capitol building three days after it was stormed, invaded and vandalized by Trump rioters in Washington, D.C., January 9, 2021. (Photo by Astrid Riecken For The Washington Post via Getty Images)

This week, we’re sharing stories from Timothy Snyder, Austin Carr, James Murdock, Myriam Lahouari, and Brian Hiatt

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1. The American Abyss

Timothy Snyder | The New York Times Magazine | January 9, 2021 | 18 minutes (4,500 words)

“A historian of fascism and political atrocity on Trump, the mob, and what comes next.”

2. The Cruise Ship Suicides

Austin Carr | Bloomberg Businessweek | December 30, 2020 | 18 minutes (4,587 words)

Cruise crew members experienced a “more extreme version of the household lockdowns that have sent people tumbling into depression.”

3. Orange is the New Peach

James Murdock | The Bitter Southerner | January 5, 2021 | 15 minutes (3,947 words)

“Southern winters have been getting warmer. Ten years ago, Joe Franklin started growing citrus on his farm in Statesboro, Georgia — a place where no one expected oranges to grow. Now, Franklin’s citrus groves teem with life and might actually help, in a very small way, to combat climate change.”

4. The Catch

Myriam Lahouari | BBC | January 7, 2021 | 9 minutes (2,427 words)

“The men call up to Sofiane, telling him that he and his brother have to jump. Guelord shouts that the younger boy needs to go first. Sofiane should throw him down.”

5. The Spirit of Neil Peart

Brian Hiatt | Rolling Stone | January 7, 2021 | 26 minutes (6,674 words)

“Rush’s virtuoso drum hero lived by his own rules, to the very end. For the first time since Peart’s passing, his bandmates and widow discuss his legacy and his final years.”

‘No Single Machine Should Be Able to Control So Many People’

Photo illustration by Jakub Porzycki/NurPhoto via Getty Images

Adrienne LaFrance has come to realize that Facebook is not a media company — it’s a doomsday machine, one operating above ground, in plain sight, just east of Highway 101 in Menlo Park, California. At the Atlantic, LaFrance traces the history and growth of the web giant, whose early mission was focused on making the world more open and connected. In its quest, it built “community” at an unprecedented global scale, but along the way stripped away all the good. As we’ve seen, Facebook is a government propaganda machine; a place for hate and terrorist groups to organize; a space for harassment, manipulation, and social experiments; and so much more. Today, its highly personalized, algorithmically powered informational environment is increasingly challenging to moderate — thus incredibly dangerous — and “no one, not even Mark Zuckerberg, can control the product he made,” La France writes.

I recalled Clinton’s warning a few weeks ago, when Zuckerberg defended the decision not to suspend Steve Bannon from Facebook after he argued, in essence, for the beheading of two senior U.S. officials, the infectious-disease doctor Anthony Fauci and FBI Director Christopher Wray. The episode got me thinking about a question that’s unanswerable but that I keep asking people anyway: How much real-world violence would never have happened if Facebook didn’t exist? One of the people I’ve asked is Joshua Geltzer, a former White House counterterrorism official who is now teaching at Georgetown Law. In counterterrorism circles, he told me, people are fond of pointing out how good the United States has been at keeping terrorists out since 9/11. That’s wrong, he said. In fact, “terrorists are entering every single day, every single hour, every single minute” through Facebook.

In previous eras, U.S. officials could at least study, say, Nazi propaganda during World War II, and fully grasp what the Nazis wanted people to believe. Today, “it’s not a filter bubble; it’s a filter shroud,” Geltzer said. “I don’t even know what others with personalized experiences are seeing.” Another expert in this realm, Mary McCord, the legal director at the Institute for Constitutional Advocacy and Protection at Georgetown Law, told me that she thinks 8kun may be more blatant in terms of promoting violence but that Facebook is “in some ways way worse” because of its reach. “There’s no barrier to entry with Facebook,” she said. “In every situation of extremist violence we’ve looked into, we’ve found Facebook postings. And that reaches tons of people. The broad reach is what brings people into the fold and normalizes extremism and makes it mainstream.” In other words, it’s the megascale that makes Facebook so dangerous.

In the days after the 2020 presidential election, Zuckerberg authorized a tweak to the Facebook algorithm so that high-accuracy news sources such as NPR would receive preferential visibility in people’s feeds, and hyper-partisan pages such as Breitbart News’s and Occupy Democrats’ would be buried, according to The New York Times, offering proof that Facebook could, if it wanted to, turn a dial to reduce disinformation—and offering a reminder that Facebook has the power to flip a switch and change what billions of people see online.

The decision to touch the dial was highly unusual for Facebook. Think about it this way: The Doomsday Machine’s sensors detected something harmful in the environment and chose not to let its algorithms automatically blow it up across the web as usual. This time a human intervened to mitigate harm. The only problem is that reducing the prevalence of content that Facebook calls “bad for the world” also reduces people’s engagement with the site. In its experiments with human intervention, the Times reported, Facebook calibrated the dial so that just enough harmful content stayed in users’ news feeds to keep them coming back for more.

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Longreads Best of 2020: Essays

All Best of Longreads illustrations by Kjell Reigstad.

All through December, we’re featuring Longreads’ Best of 2020. This year, our editors picked and featured hundreds of beautifully written and poignant essays published on the web. Because of the wide range of writing across many topics and themes, it was a challenge to sift through them all over the past several weeks to compile a definitive Best of Essays list. As I shortlisted stories, I realized there could be many different versions of this list, but, in the end, these eight reads really spoke to me.

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Mississippi: A Poem, in Days (Kiese Makeba Laymon, Vanity Fair)

Kiese Makeba Laymon was on a book tour when the pandemic hit in the U.S. In this stunner of a piece that unfolds over 14 days, the author writes on fear, racism, death, and home amid a moment of awakening. We follow along on the journey, from event to event in Ohio and West Virginia, with Laymon’s observations and thoughts interspersed with daily COVID-19 death counts and the latest words or orders from Donald Trump and Mississippi Governor Tate Reeves. It’s a powerful meditation, one that will stop you in your tracks.

We are awakened, I want to believe.

75 miles from the armed confederate statue in Oxford, Emmett Till’s childish body was destroyed. 70 miles from that armed confederate statue, Fannie Lou Hamer was nearly beaten to death. 160 miles from that armed confederate statue, Medgar Evers was murdered as he enters his home. 80 miles from that armed confederate statue, Martin Luther King was murdered in Memphis.

It took way too much Black death to get here.

I am wandering around the spiritual consequences of materially progressing at the expense of Black death. I want to be courageous. I wonder, though, when courage becomes contagious—when courage is credentialized, subsidized, and incentivized—if it is still courage at all.

Today, as I prepare to push send, and I lather my hands in sanitizer, it feels a bit too much like cowardice.

Maybe I’ll wait to send tomorrow. Maybe I won’t send at all.

The Lafayette County Board of Supervisors, a group of white men, unanimously vote to keep the armed confederate monument in the middle of Oxford, the town where I live, teach, and write.

Humiliation, agony, and death, are what I feel.

It could all be so much worse, is what the worst of white folks want us to recite.

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Longreads Best of 2020: Arts and Culture

All Best of Longreads illustrations by Kjell Reigstad.

All through December, we’re featuring Longreads’ Best of 2020. In an unprecedented, strange, and chaotic year, we’ve leaned on writers’ reflections and commentaries on the world around us to help us make sense of moments, of our lives. We revisited a wide range of arts and culture stories featured by the team this year and selected eight favorites that resonated with us.

If you like these, you can sign up to receive our weekly Top 5 email every Friday.

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I’ve always loved how Teju Cole observes and moves through our world: a flâneur of modern life, always with a notebook or a camera in hand. Here, we follow Cole on a pilgrimage to Italy as he chases the life of Caravaggio, an artist (and fugitive and murderer) whose emotionally charged, often violent scenes and chiaroscuro technique I studied closely in my AP Art History class. In Rome and Milan, Cole revisits Caravaggio’s paintings “to learn the truth about doom” — to sit with unease, and to experience the artist’s pain and turmoil (“I would find in him the reprieve certain artists can offer us in dark times”).

Cole then travels south, to Naples and along the coast of Sicily, and later to Malta, to the places where the painter spent his exile; he captures both the mundanity and intimacy of encounters with guides and strangers, like his meeting in Syracuse with D., a young migrant who arrived by boat from Libya eight months earlier. (They share a silent, beautiful moment with “The Burial of St. Lucy.”) Part-travelogue, part-profile, part-art criticism, and part-commentary on the ills and horrors of our world, it’s a stunning piece with masterful scope, but also turns inward — a read you’ll likely sit with quietly long after you’ve finished.

I sat on a bench in the middle of the room, the two paintings set at a right angle to each other. I was awe-struck, out of breath, caught between these two immensities. The very act of looking at an old painting can be so strange. It is an activity that is often bound up with class identity or social aspiration. It can sometimes feel like a diverting, or irritating, stroll among white people’s ancestors. It can also often be wonderful, giving the viewer a chance to be blessed by a stranger’s ingenuity or insight. But rarely, something even better happens: A painting made by someone in a distant country hundreds of years ago, an artist’s careful attention and turbulent experience sedimented onto a stretched canvas, leaps out of the past to call you — to call you — to attention in the present, to drive you to confusion by drawing from you both a sense of alarm and a feeling of consolation, to bring you to an awareness of your own self in the act of experiencing something that is well beyond the grasp of language, something that you wouldn’t wish to live without.

He was a murderer, a slaveholder, a terror and a pest. But I don’t go to Caravaggio to be reminded of how good people are and certainly not because of how good he was. To the contrary: I seek him out for a certain kind of otherwise unbearable knowledge. Here was an artist who depicted fruit in its ripeness and at the moment it had begun to rot, an artist who painted flesh at its most delicately seductive and most grievously injured. When he showed suffering, he showed it so startlingly well because he was on both sides of it: He meted it out to others and received it in his own body. Caravaggio is long dead, as are his victims. What remains is the work, and I don’t have to love him to know that I need to know what he knows, the knowledge that hums, centuries later, on the surface of his paintings, knowledge of all the pain, loneliness, beauty, fear and awful vulnerability our bodies have in common.

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