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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

“People are dying waiting”

TORRENCE, CA - DECEMBER 29: Hospital doctors and nurses treat Covid-19 patients in a makeshift ICU wing on the West Oeste at Harbor UCLA Medical Center on Tuesday, Dec. 29, 2020 in Torrence, CA. The hospital has no open beds for incoming patients and have worked tirelessly to create additional beds for the influx of Covid-19 patients. (Dania Maxwell / Los Angeles Times via Getty Images)

At ProPublica, reporters David Armstrong and Marshall Allen tell the story of 53-year-old Miguel Fernandez, a Latino man from California who contracted the virus last fall. The center of a tight-knit, multigenerational family, Miguel fought for his life in hospital as his loved ones pushed to get him life-saving extracorporeal membrane oxygenation treatment — a specialized therapy that doctors are now in the horrific position of having to reserve for younger patients with the best chance of surviving, as critically ill COVID-19 patients overwhelm a healthcare system stretched far beyond usual limits.

But starting in early November, the daily number of COVID-19 hospitalizations surged in Los Angeles County, rising eightfold between then and the wave’s crest, which arrived just after New Year’s Day. Within weeks, overflowing hospitals faced exactly the types of care-rationing decisions experts had feared. Hospitals set up tents to increase capacity, and ambulances circled for hours as they waited for beds to open. By early January, Los Angeles County emergency medical personnel were directed to conserve supplemental oxygen by only administering it to the neediest patients, and to stop transporting to hospitals cardiac arrest patients who couldn’t be revived in the field. State officials dispatched refrigerated trucks and thousands of body bags to the region.

Miguel didn’t want to go to the hospital. He knew people like him were dying. Latino Angelenos have suffered the highest COVID-19 death rate in Los Angeles County — almost twice the rate of Blacks and about three times the rate for whites.

The separation was especially difficult for Alejandrina, who had been married to Miguel since 1991. Miguel liked to tease her when she watched her Mexican telenovelas: Why do you watch those shows when you have me? On Mother’s Day earlier in the year, Miguel had surprised her by buying a pair of rings, getting down on one knee and proposing again. The couple made plans to renew their vows on their 30th wedding anniversary this summer. When he became sick with COVID-19, Miguel assured Alejandrina he would get better so they could get married again. She promised she would wait for him.

Read the story

Dear Mom & Dad: We Need to Talk about QAnon

Andrew Lichtenstein

“A group of Satan-worshipping elites who run a child sex ring are trying to control our politics and media.” That is the core tenet of the dangerous QAnon conspiracy theory—and nearly one-fifth of Americans think it’s true. A recent poll shows that just 47 percent of the country believe the notion is false. The rest don’t know what to think.

Also baffled: the children of QAnon followers. Jesselyn Cook of HuffPost spoke to nine such people about the confusion and pain that comes with losing a parent to a right-wing cult. “Some are desperately trying to deradicalize their moms and dads—an agonizing process that can feel maddening, heartbreaking, and futile,” Cook writes. “Others believe their parents are already too far gone and have given up trying to help them. A few have made the painful decision to cut off contact entirely, for the sake of their own mental health.”

One of the children, Daniel (a pseudonym), described how his mom, a two-time Obama voter, lost her grasp on reality. He tried to fact check her, but it didn’t work. He tried listening to her calmly, only to find she wouldn’t do the same when the tables were turned. He was stymied:

Daniel used to work in Democratic politics and, years ago, worked directly for one of the members of Congress who had to take shelter in the Capitol as rioters forced their way inside on Jan. 6. It was a difficult day for him on a personal level: He feared for his former boss’s safety and was so distressed by the insurrection as it unfolded live on television and social media that he took the afternoon off work.

When he spoke to his mom about it a couple of days later, she seemed unbothered by what had happened. Daniel couldn’t believe it. So he tried a new way to break through to her: telling her, candidly, exactly how her behavior was making him feel.

“I love you,” Daniel told his mother, “but with your inundation of fake news, you have created a reality for yourself that doesn’t exist, and by doing so, you are actively distancing yourself from your family. It is making it harder for us to connect with you because, unfortunately, we feel that you are just not living in the world that we live in, and it’s frightening for us.” 

His mom’s response laid bare the degree to which QAnon had warped her worldview: “Oh, honey,” she said. “That’s how I feel about you.”

Read the story

“A Series of Small Collapses Caused by Continual Neglect”

CLEVELAND, OHIO, UNITED STATES - 2020/09/29: Protesters wearing masks march through University Circle while holding up placards and banners during the protest. In reaction to the presidential debates being held in Cleveland, protesters gathered to protest against President Donald Trump and show support to black lives. The initial protest began with speeches at Wade Lagoon, and proceeded with a march throughout University Circle that ended at Wade Lagoon. Stragglers from the initial protest went downtown towards the intersection of 105th St. and Chester Ave. where police were stationed. (Photo by Stephen Zenner/SOPA Images/LightRocket via Getty Images)

In this deeply moving essay at The Baffler, Hanif Abdurraqib reflects on the protests of last summer and the ongoing fight for equality with a mix of grief and pride. As he considers those who protest systemic racism in America, he says “… yes, it is thrilling to see a generation that has harnessed their firsthand knowledge, their resources, their steadfast care for each other, and their rage, and channeled it into multilayered action.” But he yearns for a day when the time and energy and fortitude required to protest can be “freed up not only for other fights but for other endeavors that make newer uses of their time.”

What pushes people out into the street and what pushes them to organize might be sparked in a single moment, but before that moment, and often stretching on long after, is a series of small collapses caused by continual neglect.

A series of small collapses is how they come to be radicalized.

We were there because it was necessary that we be there. Because someone we loved was in the streets and they needed protection or care or simply someone else they knew to add to the long braid of someones blocking traffic and holding the line when cops descended with their sprays or their horses or their hands on their weapons.

The grief of this moment, this life, is torrential. More for some than others, of course. But in the midst of it, one small, distinct grief that I have been focused on is the grief that sits alongside the immense pride and excitement I feel watching young activists step fully into themselves and realize they are entirely unmoved by and unafraid of power. I had that inside of me when I was a teenager, and a lot of the people I lived with and hung around did too. But so few of us actually knew what to do with it. We knew we hated that cops were in our schools and in our neighborhoods—their primary function to inject fear into the day-to-day movements of largely marginalized kids from largely marginalized communities. But it didn’t seem like there was much to do with that rage except funnel it back into our own ecosystems, our own selves. We knew our anger but not our capacity to organize.

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Justin Townes Earl: The Saint of Lost Causes

Justin Townes Earle (Photo by Erika Goldring/Getty Images)

We saw him live once, almost exactly two years ago. Just one guitar, one man, and his heart, laid bare for all to see through his songs. Justin Townes Earle’s singular, percussive playing style was both rhythm and harmony to the melody of his voice at that small venue in the middle of a cold Canadian winter. When a string broke on his guitar on the first song, there was no tech to do the fix, no second guitar to reach for. Earle rummaged through a case, grabbed a spare string and made the change, chatting amiably with the audience the whole time. It felt like you could get to know him. We knew he’d struggled hard. You could hear it in his entire song catalogue. But of course, there was so much we didn’t know, couldn’t know, don’t deserve to know.

In this tribute for Rolling Stone, Jonathan Bernstein interviewed 30 people, including friends, former bandmates, and Justin Townes Earle’s widow, Jenn Marie Earle, who share what Justin meant to them, six months after his death. They paint a portrait of a generous and loving man, who was not able to offer that same generosity and love to himself.

Onstage, Earle was an electrifying presence: six-foot-four, dressed in vintage suits, playing in a fiery style of finger-picking he’d picked up listening to the bluesman Mance Lipscomb. He assumed the public persona of a world-weary troubadour, one worthy of his cursed namesake, the self-destructive country-folk genius Townes Van Zandt, a friend of his father.

Justin was locking himself inside a dark room off the basement for hours to write, communicating with Jenn Marie through a grate connected to the kitchen upstairs. “If you need me,” Justin would shout, “just stomp your hoof, my little dear.”

“I’d seen him starting to become more distant, in many ways,” Jenn Marie says. “That song, to me, was an admittance, of choosing the fate of being locked away from what means the most to you.” The album Justin was writing in that unlit basement study, the last album released while he was alive, would be called The Saint of Lost Causes. “I think he was admitting that he was defeated, in a lot of ways,” Jenn Marie says.

As the years passed, Earle’s insecurities grew. “There was a huge part of Justin that didn’t believe in himself,” says Jenn Marie. “He saw the music business changing. . . . When his [2014 and 2015 albums, Single Mothers and Absent Fathers] came out, he was disappointed they didn’t do so well. I think that’s where a lot of his darkness, his struggles with substance abuse and addiction, started to come to the surface in the last few years: him feeling like he wasn’t good enough.”

“We have for so long looked at people who had addiction problems … we ask them the wrong questions,” he said in 2018. “We say, ‘What is wrong with you?’ The problem is, they hurt. So you don’t ask them, ‘What’s wrong with you.’ You ask them, ‘Why do you hurt?’”

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Getting Up When You Fall From the Sky

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Mountains can hold a great allure, and for some, the pull is so strong that they build their whole lives around them. This was the case for Erin Tierney, who left her family and friends to pursue a career as a heli-ski guide. It was a job that came with sacrifices and risks, but for Tierney, the feeling of “floating down the mountain through widely spaced trees, smashing through pillows of snow, and dropping into a bottomless white room without another track in sight” was worth it. That is until she fell from the sky. In this personal account for Outside, Tierney details the trip that ended in disaster — when the helicopter she was flying in with her group crashed onto the mountain. 

Time seemed to stop. I was suddenly in a dream state, suspended, watching myself stare open-mouthed at Jim. He allowed his training to take over and skillfully put the machine into an autorotation to prevent a catastrophic nosedive into the mountain. I didn’t speak. I felt like I was floating on a cloud and watching a film strip of green, white, and gray unravel before my eyes. I thought, “This isn’t so bad.”

Then, in an instant, I felt the hardest impact I’ve ever experienced. A jolt of pain and energy spiked through my back, traveling up my spine. My hands flew up like I was on an amusement park ride, momentarily suspended in the air while they fought gravity. The clipboard I’d been holding in my lap bounced up. I tried to catch it with my hands. The metal edge of it grazed my pinky finger, drawing blood. I slammed down in my seat.

Everything was white. Then dark. And silent. Except for the voice inside my head wondering if this was the moment I was going to die.

Tierney had three compression fractures in her thoracic spine from the crash. That explained her pain, but what was not explained were the other symptoms she continued to experience: her exhaustion, her anxiety. Tierney’s accident occurred at the brink of a new awareness of the complicated nature of concussion and PTSD, but it still took a long time for her to obtain this diagnosis, and many more years for her to understand the intricacies of this hidden trauma — and what it would take to ever get back into a helicopter. 

 My body and nervous system were in a constant state of fight or flight, running constantly from the “what-ifs” and “almosts” that consumed my thought patterns. I craved sleep, but it only made me more tired. I wanted silence, but the pressure in my head felt so loud. Quiet walks in the woods should have been healing, but the visual overload of colors and patterns made me dizzy and stumble. There were no casts, no crutches, no evident reason for my state. My injuries were invisible, except for the fading scar on my finger.

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The Ballad of Justin Townes Earle

Longreads Pick

“He was a brilliant songwriter who built his own legend but couldn’t outrun the darkness that came with it. Earle’s wife, friends and collaborators recall his magnetic personality, the real-life stories behind his songs, and his heartbreaking final days.”

Source: Rolling Stone
Published: Jan 15, 2021
Length: 22 minutes (5,506 words)

A Young Cartographer’s Mission to Map the Catholic Church — and Fight Climate Change

Molly Burhans, known at the Vatican as the “Map Lady,” has a vision: to map the Catholic Church’s land around the world in an effort to battle climate change. The environmental activist uses G.I.S. software, which organizes complex data and presents it geographically so it’s easier to analyze and understand, to build a clearer picture of all the assets of the Church.

Owning an estimated two hundred million acres of land, the Catholic Church is “probably the world’s largest non-state landowner,” writes David Owen in a fascinating New Yorker profile of Burhans. The Church’s properties aren’t just cathedrals and convents, but forests and farmlands (and, interestingly, 21 oil wells, some of which have made nearby residents sick from fumes). Through more effective and morally responsible land management, Burhans sees an incredible opportunity for the Church to be at the forefront of climate action, putting its land to better use and protecting vulnerable populations from the effects of global warming. Burhans’ organization, GoodLands — whose mission is to mobilize the Catholic Church to “use land for good” — has also tracked sexual abuse cases involving priests, so there are other massive benefits of mapping the Church via G.I.S.

When she met with the Pope, Turkson acted as her interpreter. She gave Francis a map that showed the percentage of Catholics in every diocese in the world, and explained how that map related to the bigger projects she envisioned. Francis seemed interested, she told me; he said that he had never seen anything like it. Still, their conversation was brief, and she didn’t think anything would come of it. Shortly before she flew home, though, she received an e-mail saying that Francis was interested in establishing a Vatican cartography institute, on a six-month trial basis, with her as its head.

Burhans was elated: this would likely be the first female-founded department in the history of the Roman Curia. Still, she knew that she had to turn him down. The offer came with no budget, other than a small stipend for herself. “If I’d said yes, it would have been a total failure,” she said. So she returned to the United States, and went to work on a blueprint for the kind of cartography institute that she believed the Church needed. When I first spoke with her, in late 2019, the United Nations had recently named her its Young Champion of the Earth for North America, a prize for environmentalists between the ages of eighteen and thirty. She was also working on a proposal for the Vatican which included a seventy-nine-page prospectus for a ten-month trial project, the cost of which she estimated at a little more than a million dollars. The prospectus included her outline for the environmental mission she believed the Church should undertake, as well as explanations (illustrated by interactive maps and graphs) of how G.I.S. could be used to support and coördinate other ecclesiastical activities, among them evangelization, real-estate management, papal security, diplomacy, and ongoing efforts to end sexual abuse by priests. She submitted her prospectus to the Pope’s office, and booked a return to Rome for April, so that she could attend a conference and, she hoped, negotiate a final configuration for the cartography institute with Vatican officials.

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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 Team of Scientists Behind Moderna’s COVID-19 Vaccine

Photo by RADEK MICA/AFP via Getty Images

As David Heath and Gus Garcia-Roberts report in their gripping story at USA Today, credit for the swift development of the COVID-19 vaccine goes to an unheralded team of scientists and a series of pivotal discoveries in the last 15 years, all of which paved the way for the Moderna vaccine. Barney Graham is the deputy director of the Vaccine Research Center at the National Institutes of Health. He’s dedicated his career to studying viruses and developing vaccine candidates, most recently for the mosquito-borne Zika virus, which reached the U.S. in 2016, and later Nipah, the virus spread by bats that broke out in India in 2018 (and inspired the movie Contagion). It’s Graham’s years-long effort  — and the work of “a constellation of unsung scientists” including Jason McLellan and Kizzmekia Corbett — that put the pieces in place for Moderna’s rapid turnaround.

Not only is Heath and Garcia-Roberts’ piece a compelling read, it’s very accessible in its explanations and illustrations on how SARS-CoV-2 attacks and infects the human body, and how the Moderna vaccine actually works.

As Graham got word through back channels that the new virus in China was probably a coronavirus, he reached out to Moderna’s CEO, who was vacationing in France. We should scratch the Nipah plan, he urged Stephane Bancel in a Jan. 6 email, in favor of a different proof of concept related to the Wuhan outbreak.

“If it’s a SARS-like coronavirus, we know what to do,” Graham wrote. “This would be a great time to run the drill for how quickly can you have a scalable vaccine.”

Graham later laid out the idea for Fauci, his boss’s boss, in a conference room at NIH. Fauci is no micromanager; he hadn’t even been aware until then how confident Graham was in his ability to make a coronavirus vaccine.

There had been two other novel coronaviruses since 2003, although neither SARS nor MERS were terribly contagious and neither became pandemics. In early January, there was no reason to assume COVID-19 would be any different. Yet Graham already had his team diving into how to defeat the new coronavirus just to prove it could be done. Fauci was sold.

“Let’s go full-blown,” he said. “Let’s make a vaccine.”

Fauci had already set aside $5 million for the small Nipah demonstration project. Graham asked if there would there be millions more available.

“Barney, let me worry about the money,” Fauci replied.

If everything went perfectly, Graham said a vaccine could be ready within 12 to 18 months – the prediction Fauci would soon make public.

Read the story