Gretchen Sisson on Inequality in the Adoption System

ARE WE ALL WRONG ABOUT ADOPTION?

“It is so often framed as a “reproductive choice,” but I think it’s better understood as an expression of resourcelessness and constraint.”

By Rebecca CarrollFebruary 29, 202413 Minutes

America loves an adoption story. It’s got all the feel-good elements we love to romanticize: A baby is born to parents unable to care for it, a hopeful family is given the gift of an unwanted child, and everyone lives happily ever after. But the truth, many experts say, is that the institution of private adoption in America is mired in dysfunction, exploitative practices, and systemic inequities—and in far too many cases, almost no one lives happily ever after. 

This dysfunction is what interests Dr. Gretchen Sisson, a qualitative sociologist at the University of California, San Francisco, and author of a new book called Relinquished: The Politics of Adoption and the Privilege of American Motherhood. Through over a hundred interviews with American mothers who placed their children for adoption between 2000 and 2020, Sisson’s book aims to debunk myths around an institution I’ve thought a lot about myself: As a transracial adoptee whose memoir, Surviving the White Gaze, is cited in Sisson’s book, I was eager to sit down to talk with her about the politics of adoption. And so, an adult Black woman transracial adoptee meets a white woman sociologist on Zoom. Here’s what happened. 

Rebecca Carroll: You chose to interrogate the institution of adoption through the experiences of birthmothers—why? 

Gretchen Sisson: The question that brought me to the work in the first place was understanding how women end up choosing adoption. “Choosing” is a loaded term, but how they end up on the path to relinquishing their children, and what the circumstances are around that. 

And what were your main findings?

I think the two most important takeaways are, first, that adoption does not offer any meaningful alternative to abortion access. Not only are people who need abortions generally uninterested in adoption, but people who relinquished for adoption usually wanted to parent their children. Adoption is so often framed as a “reproductive choice,” but I think it’s better understood as an expression of resourcelessness and constraint. Rather than an “empowered option,” it is often a reflection of a lack of power. And, second: that adoption generally does not serve relinquishing mothers well. The grief, trauma, and disconnection of adoption belie the idea that it is unambiguously “beautiful”—and nearly all mothers came to a place of critique and cynicism that acknowledged this, with many carrying complex feelings around regret and loss.

You write in the book about how, in popular culture, birthmothers are generally portrayed as either happily moving on or becoming pathologically dangerous. Were there depictions that birthmothers you spoke with felt accurately reflected their experience?

Many of the mothers were drawn to The Handmaid’s Tale. The entire history of Handmaid’s Tale is very complicated, and I don’t want to gloss over that, but that [book] resonated most for them. That one, this extractive child-taking was acknowledged as a loss within the context of the show. And two, that the forces that were separating [birthmothers from their children] were driven by these regressive, religious, racialized, patriarchal ideas. 

There is a real dearth of stories told from the perspective of adoptees, and so I’m curious to know how and when you chose to include insights from adoptees in a text centered on birthmothers.

The place where I draw the most heavily on the words and work of adopted people is where I’m talking about transracial adoption. And that’s because the white birthmothers of biracial children that I interviewed had so little sense of what their children were going to need as people of color. I needed to account for the fact that I was only telling part of this story. Sometimes, we’d get halfway through the interview, and I’d ask, “Is your child white? Is your child biracial?” And they would say, “Oh, yeah. He is half Latino, but he looks white, so it doesn’t matter.” 

The birthmothers you interviewed for the book are primarily white. Was that a specific choice?

My 2010 sample was almost entirely white women because when you look back at the last set of good data from the ’90s, the people who [were] participating in private adoption systems were white women. There were virtually no Black or Latino women participating in the private adoption system at that timewhich doesn’t mean that they were protected from family separation. Their families were just being separated within foster care and family policing systems. But [as of 2020], we’re seeing far more participation from women of color, and particularly Black women, in the private system than 20 years ago.

Did you discover any glaring differences in feelings around the choice to relinquish between Black women or women of color and white women?

Mothers of color who were relinquishing, particularly Black mothers, thought about race very deeply. They would say they weren’t going to relinquish their child unless they could find Black adoptive parents [and] if they couldn’t find Black adoptive parents, they would need to make other concessions. So it might be, “Well, at least these white adoptive parents have already adopted a Black child, so he is not going to be the only Black child in the household.” 

One story I share in the book is about a woman who was a transracial adoptee herself from Central America, so she’s a Latina. She was raised by white parents. She had a daughter whose birth father was Latino and she ended up placing her daughter with a Southeast Asian, Indian-American family because those were the only non-white parents that the agency offered her. And so, she thought, “This is still a transracial, trans-ethnic adoption, but at least she’s not with white people.”

When it comes to Black children in white homes, it’s white folks choosing the standard of everything—beauty, education, food, acceptable behavior. Were you able to have that conversation with any of the white birthmothers who had relinquished children of color?

When I did follow-up interviews, they were much more aware of it because they’re mostly in open adoptions, and their relationship with their child made them have to be more aware of it. Were they particularly attuned to the extent to which the entire system of adoption is predicated on a racialized idea of family? No. A few of them did, but that was not the norm. There was one mother whose child was Black/white biracial, and she wanted a biracial couple to adopt and couldn’t find one. So she chose a gay couple that lived in New York City. That was her concession, but she was like, “I still feel like I failed him. I wish I could go back and talk to my younger self and be like, ‘No. Don’t give up. Don’t accept this from the agency. Go to a different agency. Fight harder for this.’”

And how do you think celebrities have played a role in marketing transracial adoption?

GS: I think that’s huge. You see Madonna and Angelina Jolie with their well-publicized transracial adoptions in the early 2000s. I think those narratives are important: Yes, we can love people who don’t look like us. [But] it entrenches this idea of transracial adoption as a symbol of progress that wasn’t attuned to what adopted people needed. And it sold the idea of adoption as white saviorism—that the way we’re going to take care of African children is by extracting them from their countries and bringing them here, rather than focusing [freeing these countries] from the conflicts and economic and geopolitical instabilities that drive the exporting of children

Angelina Jolie with some of her children. (L-R) Shiloh Jolie-Pitt, Zahara Jolie-Pitt, Angelina Jolie, Vivienne Jolie-Pitt, Maddox Jolie-Pitt and Knox Jolie-Pitt. (Photo by Karwai Tang/WireImage)

How do you think we got from white folks saying, “Let’s go to Africa and steal Black folks and make them slaves,” to white folks saying, “Let’s go to Africa and buy Black folks and make them our children”? 

I talk about enslaved mothers as relinquishing mothers, and I think their closest corollary and counterpart in modern society are mothers who lose children within the systems of family separation. Because I view child welfare and family policing as a system that is about punishment in a way, similar to what Black women have always faced in the United States. The common thread for me is that we don’t recognize any value in preserving Black families. 

As an adoptee, reading your book was a lot. And I wonder, even in the best-case scenario, is it an institution that we should uphold?

I do talk about people who take a reform approach to adoption, who want to explore the idea of ethical adoption. There are policy proposals out there to change the marketing of adoption. I think that there is value there. I’m glad that there are people working in that space. 

What is ethical adoption? Is that a thing?

As I mention in the book, there are aggressive marketing tactics being used towards vulnerable pregnant people to sell adoption to them. There are unscrupulous players trying to insert themselves into a system purely for making a profit, and regulating that is ethical. But are we reforming the system to make it actually serve people? Or are we reforming the system so that we feel better about it, but it’s still deeply harmful? What’s more exciting to me is thinking about what family preservation looks like. And that’s not just about policies that support families and provide a meaningful social safety net, but it’s about [questioning] the idea that the only way to support and care for children is within these legalized parenting relationships. What advocates are arguing for is a more expansive idea of how we provide care for families and children outside of the legal transfer of parental rights. 


A World Without Exceptions

FEATURED STORY

The devastating consequences of the Dominican Republic’s absolute abortion ban

By Mariane PearlFebruary 6, 2024

Standing on the threshold of her home, Niurki, 18, holds her fussy two-year-old baby boy in her arms and surveys the only landscape she’s ever known. The rusty tin roof on her weathered, pale yellow house barely offers protection against the elements. Niurki lives in San Cristobal in the Dominican Republic, a country that attracted seven million tourists in 2022 alone. But it also boasts one of the highest rates of teen pregnancies in Latin America, a consequence of several factors, including the total abortion ban in effect there since 1884

Niurki didn’t want a baby. Her ex-boyfriend and the baby’s father, Carlos, left her the day that she found out she was pregnant. Niurki says she didn’t consider an abortion because of her Catholic faith. But it wouldn’t have mattered; the procedure was illegal anyway.  So she had the baby, and, like 44% of teen moms in the country, eventually had to drop out of school to raise her now toddler. Today, Niurki is unable to work because she does not have access to childcare. Her ex is forced to pay child support, but it’s a paltry $35 per month. “I depend entirely on him,” she laments. “Most of the time, he’s late, and we’re left with nothing.”  

“The worst,” she tells me, her voice still childlike, “is when I don’t have money for food or milk. I make some fruit juices to calm the baby’s hunger, but he keeps crying. It’s despairing.” 

Niurki and her son. (Photo by Mariane Pearl)

Niurki had never been taught about family planning, condoms, or birth control before she had her baby. Now a mother, she’s stuck at home, unable to make a living or pursue her studies. Today, Niurki supports activists who have been campaigning for decades for what they call “las tres causales,” or the three exceptions—measures that would lift the ban in cases of rape or incest, when the life of the mother is at risk, or when the fetus is not viable. President Luis Abinader had promised to support the three exceptions during his campaign, but he has failed to make good on those promises since he took office in August 2020. In July 2021, the Senate of the Dominican Republic voted 23-3 to support a criminal reform bill stripping out any language about the three exceptions.

The United States is months away from a 2024 election, in which the two leading Republican candidates for president and many of those running for Congress have vowed to pass a national abortion ban if they win. The dire situation for women in the Dominican Republic gives us a window into what that might mean for pregnant people here—including teenagers who are denied authority over their own bodies and their families.

No choices; devastating consequences

Niurki and her son in their home. (Photo by Mariane Pearl)

In the Dominican Republic, the responsibility for every aspect of reproduction—from preventing it to raising children—falls entirely on women. “Less than one percent of men use condoms,” Dr. Lilliam Fondeur, a gynecologist and activist, tells me during a conference on reproductive rights in Santo Domingo, the country’s capital. Sexual education in schools is practically nonexistent because, doctors say, even talking about sex is perceived as encouragement. And while contraceptives are theoretically available, 46 percent of women either don’t know about them, can’t afford them, or are reluctant to ask because they fear people in their communities will find out. However, sterilization is a common method of contraception in the Dominican Republic, particularly among women who are married or in domestic partnerships (30.5 percent), but 25 percent of women who opt for sterilization don’t understand the procedure is irreversible. “On the one hand, the government tells you not to abort,” Dr. Fondeur says. “On the other, it doesn’t provide the means to avoid pregnancies.” 

And the punishment for trying to end an unwanted pregnancy is severe: In this fervently Catholic and conservative country, which bears a Bible on its flag, women risk six months to two years of jail time. Meanwhile, for health professionals like Dr. Fondeur, the punishment for helping someone terminate a pregnancy is between five and 20 years of imprisonment. “Professional secrecy isn’t worth a damn,” Dr. Fondeur says. “You can go to jail even for only providing information. You don’t want the woman to die, but you have no alternatives.” As a result, she says, “twenty percent of teenage girls, mostly from rural and lower-income populations, are mothers. [In too many cases], they have babies with men up to 50 years older who tend to abandon them by the time they’re 18.” 

But bans on abortion do not reduce the need for them. The Dominican National Health Institute estimates at least 100,000 illegal procedures occur per year. At least eight percent of all maternal deaths are estimated to be the result of those who tried to terminate their pregnancies but died from infections and bleeding, and around 25,000 more women are hospitalized every year as a likely result of unsafe abortion. 

“Professional secrecy isn’t worth a damn. You can go to jail even for only providing information. You don’t want the woman to die, but you have no alternatives.”

And as in the U.S., the consequences of criminalization are also dire for those with wanted pregnancies. Damaris, a 31-year-old Dominican woman of Haitian descent, experienced terrible pain in her abdomen 16 weeks into her third pregnancy. Her sister Juliana told me she took Damaris to more than five different hospitals and clinics—all of which claimed they didn’t have the means to perform a sonogram, something Juliana later learned was not true. In an apparent effort to avoid abortion, “they went as far as to pretend the baby was still alive when she was, in fact, dead,” she says. With the dead fetus inside her for several days, Damaris went septic and ultimately died in great pain. “She left a son who, because of her death, has refused to go to school ever since, a daughter who tried to cut her veins and survived but still has no friends,” Juliana says, “and a father who succeeded in committing suicide after various attempts.”

Those stories are everywhere in the Dominican Republic. When Rosa Hernandez’s daughter, Rosaura, began suffering from high fevers and getting bruises all over her body at 16, Rosa brought her to Santo Domingo hospital. There, on July 2, 2012, she was told that her daughter was four weeks pregnant. What she wasn’t told was that Rosaura had a deadly and fast-moving form of leukemia and needed urgent chemotherapy that was denied to her because of her pregnancy. She was suffering but wasn’t prescribed painkillers—also allegedly to protect the fetus. “Get me out of here! They’re going to kill me!” Rosaura told her mother. Rosa begged the doctors. “I humiliated myself. I went on my knees,” she remembers. Rosaura was only given chemotherapy on July 26—three weeks after her diagnosis—and died less than a month later on Aug. 17. 

There is only one organization in the countrythe Colegio Médico Dominicanothat, alongside other mandates, protects women inside hospitals where this kind of obstetric violence is rampant. Francisca Peguero, an advocate for the Colegio Médico Dominicano, told The Meteor that if women arrive bleeding because they tried to provoke an abortion or have an infection, hospitals treat them without painkillers. “They are guilted and singled out in the eyes of the community,” Peguero says. “When a woman dies giving birth, there are no investigations; it’s simply filed as internal bleeding.” She tells me about one of the most painful cases she’s seen in her 30-year career: a 14-year-old girl with a banana stuck in her uterus, the only method she had thought of to abort. The girl had been reported to the authorities by her own mother, and when she was taken to the hospital bleeding, policemen were waiting for her in the next room. Later, Peguero found out the girl had died from her injuries and that her pregnancy was the result of incest.

Francisca Peguero (Photo by Mariane Pearl)

In Estebenía, a couple of hours west of the capital, Dr. Jaime Calderon runs a modest, rural health clinic. Dr. Calderon, a bold, bespectacled man in his 40s, doesn’t like to discuss abortion, but he admits to treating girls who have tried to end their pregnancies. “They use ancestral herb beverages to induce abortion, or they introduce objects in their uterus, give blows to their abdomen, or take harmful medications,” he says. 

Clandestine clinics practicing safer abortions charge 500 US dollars—an exorbitant fee when the monthly minimum wage here is 250 US dollars. The safe abortion drug misoprostol is available on the black market (and, because it’s prescribed to fight ulcers, in select pharmacies), but it is also cost-prohibitive. “Meanwhile, the church keeps preaching abstinence,” Dr. Calderon says. “Imagine that! Abstinence in the DR!”

Performing a miracle

Nonetheless, advocates continue to push for change. And, as a young mom, Niurki joined Conamuca, The National Confederation of Country Women, in San Cristobal, the region with the highest rate of teen pregnancies and child marriage. The feminist NGO strives to teach and give a voice to girls 13 to 17. “On average, they start their sexual lives at age 12 without information about planning or sexually transmitted diseases,” says Lydia Ferrer, one of the program leaders.

At the Conamuca Center, a large group of Black teenage girls sit in a circle under a thatched roof and a single fan hanging from the ceiling. A green banner in support of women’s health has been set on the floor, surrounded by offerings of bananas, beans, tomatoes, onions, squash, and carnations. Ferrer nods proudly as she listens to “her” girls presenting their research on the prevention of domestic violence. Indeed, everyone here sounds assertivejoyful, even.  “Teaching feminism is like performing a miracle,” Ferrer says. “Educating these girls about reproductive rights and their integrity in general is saving their futures.” 

At the CONAMUCA Center. (Photo by Mariane Pearl)

Ariana, 18, considers herself lucky: Ferrer is her mother.  As a young girl, she went with her to visit vulnerable communities. She heard stories of incest pregnancies in which the girls didn’t even know that what was done to them was wrong. Most households were managed by single women, and it was often mothers who sold their daughters into forced marriages or unions out of poverty. It still is. “The man goes and promises a cow, a truck, or money, rarely more than 500 USD. But they never deliver; they say she’s not a virgin anymore. What is the community going to say?” Ferrer says. “The new family turns them into maids. When they get pregnant, they can’t have an abortion, so they are sent back to the parents who sold them in the first placewithout an education, with one or two babies, and without a penny to their names.” Ariana witnessed how difficult it is to convince grown-up women that educating their daughters is a better investment than selling them off. “But to induce change,” she points out, “it’s easier to educate ten-year-old boys than to change the mind of fifty-year-old women. ” 

It’s 4 p.m., and the baby finally falls fast asleep in Niurki’s arms, despite music blasting from a neighbor’s stereo. A drunken pair in their 40s is dancing Bachata at a makeshift bar next door. Niurki puts the baby down, and her mother, Yeimi, tells me that she, too, had her first baby at age fifteen. “What Carlos, Niurki’s ex-boyfriend, did was pure evil,” she says, barely containing her indignation. “In our patriarchal society, it’s a brag to get a teenage girl. He had no intention to stay with her or the baby. He defiled her. Like we say here, a fly doesn’t eat the meat, but it wastes it. The idea is that no one else will be her first.” Outside Niurki’s house, a truck swivels its way around the giant potholes on the unpaved road with two large stickers that say God loves you and Jesus is coming. Niurki waves to a girl who lives across the path from her. “She’s sixteen,” Niurki says.  Sitting on a red plastic chair, the girl is holding her own baby. She wears a fitted bright pink dress. She looks bored and annoyed, as if she was meant to go to a dazzling prom and was left to nurse a baby instead. 

But Yeimi smiles, displaying a gap between her two front teeth; she is hopeful. Thanks to Conamuca and the education Niurki receives there, Yeimi is now confident her daughter will make it. Niurki currently attends school on Saturdays and vows to become a psychologist.  Yeimi, too, is in school, training to graduate as a nurse; she wants to inspire her daughter. Right now, she works as a health promoter, climbing mountains and crossing rivers to spot potential teen pregnancies in remote communities. “I tell girls we have immense weaknesses, but we also have immense strength because we have suffered…we have weathered so much injustice, now we can stand strong. We’re studying, we’re rallying, demanding information, and getting economically independent. We are a new generation of feminists for the Dominican Republic.” 

Yeimi, Niurki’s mother. (Photo by Mariane Pearl)

With municipal elections scheduled for February 18th and Congressional elections in May, Dr Fondeur stresses that in the Dominican Republic, violence doesn’t only come from patriarchy and machismo. “The worst and deepest violence is structural,  it comes from the government politicizing abortion without consideration for women’s rights or for our health.” In watching the recent turn of events regarding abortion in the United States, Dr. Fondeur says, “ If the U.S. votes for a total abortion ban, we stand no chance of changing the law here,” she says. “We’ve always looked up to our neighbor, and now we’re scared.” 


Mariane Pearl

Mariane Pearl is an award-winning journalist and writer who works in English, French and Spanish. She was most recently the managing editor of CHIME FOR CHANGE, and is the author of the books A Mighty Heart and In Search of Hope.


“I Didn't Feel Like a Mother. I Felt Like a Criminal.”

FEATURED STORY

All over the country, in the aftermath of Dobbs, pregnant people are being prosecuted for their behavior. This is the story of one woman, Lauren Smith, who’s facing a ten-year prison sentence—and fighting back.

By Neda Toloui-Semnani

November 9, 2023
GREENVILLE, SOUTH CAROLINA

Lauren Smith thought she knew what to expect as she was rushed into the operating room. At 26, it was her third cesarean section. 

“I don’t remember much before or after because everything moved so fast,” she says. “I remember crying. I remember being cold and being wheeled in there, and then, laying back, and then, I remember looking at the clock. It was at an angle.” The surgeon cut her open and pulled out a squirming infant, a baby girl Smith would name Audrey. Delivered a month early, she was a strong, healthy, kicking-screaming, six-pound, five-ounce newborn.

Smith thought she knew what would come next. But like a character in a Kafka tale, her world had shifted while she slept. 

The same day she delivered—February 18, 2019—a urine drug screen confirmed that she had used marijuana during her pregnancy. The next morning, Audrey’s meconium, the first stools voided by an infant, tested positive for THC, a compound found in marijuana.  

Three nights later, as Smith, who is Black, prepared to leave the hospital, a case worker and a lawyer from the Department of Social Services told her that because she had tested positive for THC, she could not take her new baby home.

That’s when she started to scream.

She was alone in the hospital room, the phone to her ear, sutures across her abdomen. She kept asking for someone—anyone—to explain what was happening. “I just remember nobody was there to speak for me,” Smith recalls. “I couldn’t even really speak for myself.” 

“I didn’t feel like a mother,” she says, “or a person who just had a baby. I didn’t feel like a victim. I felt like a criminal.” She said goodbye to her baby that night.

Lauren Smith is still waiting for trial. (Image via The Meteor)

Six months later, Smith would be arrested and charged with felony child neglect for using marijuana while she was pregnant with Audrey—a crime that, in South Carolina, carries a penalty of up to 10 years in prison. Through a complex sequence of events, the charge also led to her losing custody of her second child, Aiden, for two years. Smith’s trial has been pushed back again and again; as of publication, it is set for February 19, 2024.

Smith is one of the hundreds of women in the U.S. who have been arrested—and, in many cases, had their children taken away—for behavior during their pregnancies, including the use of controlled substances both legal and illegal. These cases all hinge on fetal personhood, a legal precedent granting fetuses rights, often from the moment of conception. 

In the year since the U.S. Supreme Court handed down Dobbs v. Jackson Women’s Health Organization, which ended federal protection of abortion, at least 27 states have included fetal personhood language in their anti-abortion laws. But some states were taking action long before Dobbs, often by using “chemical endangerment statutes”—originally enacted to protect children—to prosecute women like Smith.

Smith’s story shows how the same governments breathlessly passing abortion bans are using related legal theories to police pregnancy—and how the same laws that purport to protect unborn life can destroy families in the process, leaving parents, grandparents, and caregivers to navigate the complex web of social service agencies, law enforcement officers, prosecutors, and medical staff alone.

“WHEN YOU MAKE PLANS, GOD LAUGHS”

Lauren Smith, 31, had big dreams. In high school, she was one of the top three runners on her track team in Deerfield, Illinois. But in her last season, she went in for a physical and learned that she was pregnant. At 16, she chose to have the baby.

Her second pregnancy, in her mid-twenties, was equally fraught; she spent much of it in a shelter for pregnant women in North Carolina. Smith used marijuana during both pregnancies. 

After she gave birth to her son, Aiden, she moved to Greenville, South Carolina, to be closer to her mother, Toni, and her eldest daughter, Aniyah. Aniyah had chosen to live with Toni full-time years earlier, so now Smith hoped to reconnect with the child she had had so young. 

In Greenville, she found a job waiting tables and planned to finish her G.E.D. and go to school to study nursing or maybe law. Then, she met a man and fell in love; they moved in together. Within a year, she was pregnant. They celebrated by going out for tacos.

“I had never really been excited for a pregnancy,” Smith says. “They’ve always been surrounded by turmoil and shame and just sadness, so to speak. So it was nice to share it with a partner. I was excited; I was happy.” 

Smith’s son Aiden with his older sister. (Image via The Meteor)

The couple thought of sweet ways to tell people their good news. For his mom, they gave her a gift: an ultrasound picture tucked into a tiny onesie. 

“I had it all planned out,” Smith says. “‘I’m going to plan a baby shower, finally, for once. I’m going to be celebrated, and the baby’s going to be celebrated, and we’re going to get married.’ I just had all these plans and visions,” Smith says. 

“They say when you make plans, God laughs.” 

Over the course of her pregnancy, Smith’s relationship with her partner turned volatile. Their fights became increasingly intense, and then violent, according to Smith. Greenville’s Department of Social Services (D.S.S.) got involved when Smith was about six months pregnant after she ended up in the hospital with a severely dislocated shoulder. She spent a week in a domestic violence shelter with her 18-month-old son in tow. She says that the stress of D.S.S. scrutiny, an unstable relationship, and the physical demands of working in the service industry made a tough pregnancy even worse. 

“It was morning sickness, afternoon sickness, night sickness,” she recalls. “It was miserable to the point where I would drink water, I would eat crackers, and it would just come up. There’d be times where I couldn’t even eat at all.” She was diagnosed with extreme nausea and vomiting, along with chronic dehydration and anemia. She had to go to the hospital to receive intravenous fluids and was advised to try to gain weight. 

Smith’s mental health also suffered. She had prenatal depression and suicidal ideation, according to her medical charts. Her doctor prescribed Zoloft—which is safe during pregnancy—but it didn’t work for Smith. Her hair fell out while her anxiety and depression remained.

“I’M VERY OPEN WITH MY DOCTORS” 

Whether or not Smith’s decision to self-medicate was safe is more a matter of opinion than indisputable science. The effects of marijuana on pregnancy and fetal or childhood development are uncertain. This is largely because it’s difficult to get Schedule I drugs—drugs the federal government claims have no medicinal value—approved for research and even harder to study their effects on pregnancy. “Most of our understanding is speculative and inferential,” says Peter Grinspoon, M.D., an instructor at Harvard Medical School and the author of Seeing Through the Smoke: A Cannabis Expert Untangles the Truth about Marijuana. (This August, the U.S. Department of Health and Human Services recommended recategorizing marijuana as a Schedule III drug, which would shift it from being lumped in with heroin and cocaine and put it in the same category as drugs like ketamine and testosterone.)

What research does exist is limited and, at times, contradictory. A 2020 survey by the National Institute on Drug Use shows that there is “no human research connecting marijuana use with miscarriage,” and a 2019 Columbia University study went further, concluding that cannabis by itself will not harm a fetus or impede its development. However, other evidence shows that, in rare cases, cannabis use could result in low birth weight and abnormal fetal brain development. There is no research on what the threshold is for these risks or whether there is a safe or therapeutic amount of cannabis a person can ingest while pregnant.

“If I needed to roll a joint and hit it a few times to be able to still take care of my other children and work and live, that’s what I did.”

This dearth of research has led medical associations, including the American College of Obstetricians and Gynecologists and the American Academy of Pediatrics, to recommend that patients abstain from using cannabinoid products while pregnant or breastfeeding. 

At her second prenatal appointment, Smith told her OB-GYN that she was using marijuana medicinally. “I’m very open with my doctors,” she explains. “I feel like the only way they can help you is if you tell them everything. So I informed my doctor when they asked—I said I do smoke marijuana because it definitely helps with certain pregnancy symptoms that are hard to deal with.

“It wasn’t like I was doing bong rips or anything,” she says. “If I needed to roll a joint and hit it a few times to be able to still take care of my other children and work and live, that’s what I did. And I didn’t get any medical advice advising to steer away from it, or that it would cause any issues to the baby or to me, ever.” According to Smith, her doctor told her only that she should stop smoking marijuana 30 days before her due date to avoid a positive drug test.

Here, accounts of what happened differ. Smith’s medical chart states that someone “discussed the risks of [marijuana] use in pregnancy” with her, and both her medical chart and her social services files also note that she was advised to stop using cannabis and that a positive drug screen could have implications for her open social service case. Prisma Health, which owns both the clinic and the hospital where Smith was a patient, and the Department of Social Services did not respond to repeated requests for comment.

But Smith’s choice to self-medicate was not unusual: Marijuana is, in fact, the most common illicit drug used during pregnancy. A 2019 study by Kaiser Permanente Northern California found that more than seven percent of pregnant women reported using marijuana to treat depression, anxiety, stress, pain, and nausea, a jump from just four percent who reported doing so three years earlier. Young women were especially likely to have used marijuana during pregnancy—almost 1 in 5 of those ages 18 to 25 reported doing so. And race and economics are also a factor, with a higher percentage of Black, low-income women historically reporting cannabis use during pregnancy.

That makes sense to Amanda Williams, M.D, an obstetric-gynecologist, maternal care expert, and instructor at Stanford University’s School of Medicine. “When people have limited access to services,” she says, “then sometimes using something like THC to help manage their symptoms is a pathway that people choose to take. [There are] other means of managing depression and anxiety, like therapy, counseling, meditation, exercise—all of those things are possible. But if one doesn’t have access, especially someone with a psychosocially complex life, one can understand why they would seek other options.” 

Lauren Smith is still awaiting the fate of her family. (Image via The Meteor)

By the end of her seventh month, Smith says she had stopped using cannabis. On February 14, 2019, she arrived at the clinic for her OB-GYN appointment with her heart racing. The nurse took her vitals and told her that her blood pressure had spiked. At first, Smith thought it was because of stress: She had been fighting with her baby’s father on the way to the doctor’s office and had been experiencing preterm labor even while she worked long hours as a bartender, setting up and breaking down the bar. (“I have a high tolerance for pain,” she says.) 

Now, at the clinic, the doctor was telling her she had extremely high blood pressure. She would be diagnosed with gestational hypertension. “If we don’t get this baby out,” Smith remembers the doctor saying, “you could die.”

What she says she did not realize was that that day, the medical center collected her urine for a drug screen. That drug panel, analyzed at Greenville Memorial Hospital’s lab, came back negative for everything except THC, the main psychoactive compound in cannabis. 

The baby went through two rounds of drug testing. Her urine came back negative for all substances, so the hospital tested her meconium, which includes the remnants of materials ingested throughout the pregnancy. That test came back positive.

Marijuana testing is famously imprecise. Sources in both Greenville Memorial Hospital and Quest labs confirmed that the numerical results of THC tests simply show that Smith had used the drug at some point while pregnant but can’t reveal when the drug was ingested.

THE NEXT FRONTIER OF ANTI-ABORTION LAW

Fetal personhood laws have been a rallying cry for anti-abortion activism since long before the fall of Roe v. Wade

Indeed, the legal theory was pioneered 26 years ago—in South Carolina, in fact—with the landmark 1997 Whitner v. State of South Carolina decision, which found that not only did a fetus have all the rights and privileges of a person under the age of 18, but that it was in the state’s best interest to protect them. 

The case hinged on the experience of a woman from Easley, South Carolina, named Cornelia Whitner, a Black woman. In February 1992, she delivered her third child, a boy. Her urine and his came back positive for trace amounts of crack cocaine.

It was the time of the so-called War on Drugs, and South Carolina required hospitals to drug test every pregnant person at delivery—a law the U.S. Supreme Court would rule unconstitutional, but not until 2001, too late for Whitner. She was charged with felony child neglect and went on to serve eight years in prison. 

Whitner appealed her conviction; a lower court overturned it, but then the state’s Supreme Court, in a three-man majority, ruled that a viable fetus had the same rights as a child and the conviction should be upheld. Fetal personhood had become legal precedent. 

South Carolina’s then-Attorney General Charlie Cordon was the driving force behind the state’s argument. He had built his career prosecuting pregnant women who were struggling with addiction, and he also prosecuted health care workers, social workers, and drug counselors who didn’t report a mother’s drug use.

The effect of the court’s decision was immediate. In the year after the Whitner decision, The New York Times reported that 23 pregnant women who tested positive for crack cocaine in South Carolina had been charged with child neglect. Of those, 22 were Black. “I can’t help the fact that [crack cocaine] is the drug of choice for Blacks,” Cordon said at the time. 

For the next decade, largely because of Cordon and Whitner, South Carolina led the country in pregnancy criminalization cases, according to a review of national data by Pregnancy Justice, a nonprofit that advocates for pregnant people caught in the criminal justice system. In hindsight, the Whitner decision and its legal champion Cordon were an early bellwether for where the anti-abortion movement is now. A new report from Pregnancy Justice found that between 2006 and 2022, as abortion protections began to atrophy across the country, cases of pregnancy criminalization tripled. Although they happened everywhere—in 46 states and territories—the vast majority can be traced to five states—Alabama, Tennessee, Oklahoma, and Mississippi, alongside South Carolina. In a few cases,  women who experienced stillbirths and miscarriages were charged with homicide and jailed, but most cases, like Smith’s, involved women who were charged with felony child neglect or abuse after they or their infants tested positive for a controlled substance. Most of these cases were brought forward by medical and/or social service professionals, including doctors and case workers.

And since Dobbs, legislators around the country have been writing fetal personhood into law, making these cases easier to bring. Because of the legal concept of fetal personhood, “pregnant people have fewer rights than people who aren’t pregnant,” explains Trip Carpenter, a legal fellow with Pregnancy Justice. “If you are pregnant and you do something that allegedly puts your fetus or your pregnancy in harm, you could be charged with [a] crime. 

“If you’re pregnant and you fall down the stairs, you could be charged with a crime,” he says. “If you’re pregnant and you drive without a seatbelt, you could be charged with a crime. If you’re pregnant and you have a glass of wine, or you use drugs, you could also be charged with a crime.”

Trip Carpenter of Pregnancy Justice (Image via The Meteor)

And balancing the rights of a parent and a zygote or fetus isn’t straightforward, either. “Let’s look at extreme morning sickness,” says Robert Ianuario, a criminal defense attorney in Greenville who specializes in marijuana laws. “The mother can’t keep food down; the child’s not getting properly nurtured. If the mother smokes marijuana, doesn’t have the nausea, and can eat, then the child’s getting more nourishment. How do you balance that?”

Expanding fetal personhood has far-reaching implications. It could limit people’s ability to undergo IVF treatments or take needed prescription drugs. Also, as fetal personhood takes hold nationally, it falls to the discretion of individual prosecutors to decide which cases should be pursued to the full extent of the law and which ones should not. That level of discretion means that pregnant people are more vulnerable to criminal prosecution than ever before. 

Child neglect is a catchall to catch all of these people we consider throwaway people or people we don’t like,” says Carl Hart, PhD., one of the authors of the Columbia University study on cannabis and pregnancy and the author of the book Drug Use For Grown-Ups: Chasing Liberty in the Land of Fear. “You don’t have to say you don’t like them. You just put them under this category.”

A FAMILY TORN APART 

Even after losing custody, Smith tried to breastfeed Audrey as she had her older children. For the first six weeks of Audrey’s life, she would wake up early—around 4 a.m.—and drive to the home of the paternal grandmother who has custody of Audrey to feed her daughter. 

It was on one of these mornings in April, when Smith was holding Audrey, that Detective Robert Perry of the Greenville Sheriff’s Department called. Smith’s case had been referred to the police on March 21, 2019. She didn’t know she was under investigation. Perry recorded the call without her knowledge, a practice that is legal in South Carolina.   

The Meteor acquired a copy of the recording and has reviewed it. 

Perry asked if she had used marijuana recreationally, and she said no. She had been using it therapeutically and detailed her symptoms. “Well, that doesn’t sound like a wonderful trimester for you,” he said. “You poor thing.” 

Perry acknowledged that the science is not clear about whether marijuana is harmful to the fetus or not. 

“I’m not trying to give you a hard time,” he said, “but I’m also trying to be real plain with you, too. You could be facing criminal charges, and you might not be. A lot of parents, especially parents of kids are born with heroin or meth in their system, there’s no mercy for them. They get charged. Marijuana’s a little bit different.” As long as the parent cooperates, he explained, the state will work with them. 

“I will touch base with you again,” he said, “I promise.” Smith never heard from him again. 

Smith did not realize that on the basis of that phone call, a warrant would be issued for her arrest in May. It claimed that “the defendant placed her unborn child at risk of harm by exposing the child to marijuana while still in the womb. By exposing this child to this illegal drug, she affected the child’s life, health, and safety.” The charge: unlawful neglect of child or helpless person—a felony.

“Pregnant people have fewer rights than people who aren’t pregnant.”

Greenville’s Sheriff Department would not comment on the specifics of this case, but said that Detective Perry acted appropriately and within the law.

The police came for Lauren Smith on August 19, 2019. She remembers the sound of police cars screeching to a stop in front of the small townhouse—lights on, sirens blaring. She remembers officers and K-9 units—dogs—pounding up the short stoop, banging on the door. She remembers an officer swooping down to pick up her baby, who woke up screaming. 

Initially, officers said they were there because Audrey’s paternal grandmother, who has custody of the child, thought there was a chance Smith would leave the state with the baby, which would have been considered custodial interference. Once Audrey was located, the paternal grandmother declined to press charges—but instead of leaving, officers executed the open warrant for marijuana use and arrested Smith. They handcuffed her. They handcuffed her aunt. An employee with social services took Audrey back to her paternal grandmother, and Smith was held in jail for three days.

On the third day, she was driven to family court for a hearing concerning the emergency removal of her son, Aiden. In cases of alleged unlawful conduct toward a child, all of the children are at risk of being taken from their homes and being placed with relatives, family friends, or into emergency foster care. That day, a worker from social services showed up at Aiden’s daycare and drove him away, placing him in care.

For weeks, Smith’s mother, Toni, says, the morning Aiden was taken from her replayed in her mind. Aiden “didn’t want to go to school,” she recalls. “I finally convinced him to go, and we got in the car, and I dropped him off. I didn’t know he wouldn’t come home for almost three years.”

Eventually, Aiden was placed in foster care, and for two years, the state pushed to end Smith’s parental rights. She had to have supervised visitation not just with her baby girl, but with her son as well. But she and her mother fought back. 

Toni cleaned houses, and Smith managed a Domino’s Pizza; both pulled together money to pay for lawyers and for Smith to undergo state-sanctioned treatment plans, including what felt to her like an endless series of mandated programs: drug treatment, parenting classes, and both domestic violence victim and perpetrator classes, even though she had never been accused of violence against her children. 

During this period, Smith was in and out of a tumultuous relationship with Audrey’s father. She says she felt trapped in their cycle—he promised to change, and she wanted her family together, especially as his mother had custody of Audrey. She says things would be okay for a while and then become toxic again. She struggled with her mental health and suicidal ideation.

Eventually, however, Smith was able to complete her treatment plan, and, in 2022, a family court judge ordered Aiden to be returned to his mother and their family. “He still hasn’t recovered,” Toni says.

Lauren Smith with her son. (Image via The Meteor)

In the meantime, Smith’s criminal trial has been delayed over and over. 

At one point, Smith also was offered a plea deal—her charge would have been reduced to misdemeanor cruelty to a child—but she rejected it. “I don’t believe in pleading to something I didn’t do,” she says. According to data collected by the public defender’s office of Greenville County, at least 35 women across South Carolina have been charged with unlawful neglect of a child for cannabis use while pregnant. Smith’s is the rare case to go to trial.

“A lot of these cases start by prosecutors taking laws that already exist and applying them in ways that the legislator do not intend, or even sometimes applying laws that don’t exist at all to prosecute pregnant people,” explains Carpenter of Pregnancy Justice. “These cases are really driven by prosecutorial discretion. 

“Even in a state like Alabama,” he continues, “which prosecutes these cases at a higher rate than any other state in the nation, over half of the prosecutions happen in one county, [Etowah]. They’re driven by one prosecutor wielding their discretion in a really aggressive fashion. So it’s really important to keep an eye on that granular level.”

But in July, Smith’s prosecutor left the office, and another was assigned to replace her. (A spokesperson from the 13th Circuit Solicitor’s Office declined to comment on this case.)

“I just want this to be over,” says Smith. “I just want whatever life I have left back.”

FIGHTING THE LAW, YEAR AFTER YEAR

By the time the judge evaluates the merits of Smith’s criminal case, it will have been five years and a day since Smith gave birth to her youngest. 

Smith and her family—especially her children, Aiden, Aniyah, and Audrey—have each paid a steep price for the state’s commitment to her criminal prosecution. Smith sometimes lapses into serious depressive episodes, especially after visits with Audrey.

“I feel really guilty because I have kids and a son that I fought for, but I’m tired of feeling stuck. I’m tired of being unhappy,” Smith says. “I’m angry and I’m mad because—I don’t know. I’m angry at myself, at the circumstance, at the situation, at all of it.”

Audrey still lives with her father’s mother. By all accounts, she’s well cared for and deeply loved, but she wants her mother. After every visit, Smith says that Audrey asks if she can leave with her. Smith has to tell her daughter that she cannot. 

To date, there is no evidence that Audrey has suffered developmentally or physically because of her mother’s marijuana use during pregnancy. “Her baby was healthy at birth,” Carpenter points out. “Her baby is still healthy. Her toddler, I should say, is still healthy.” The state’s behavior, however, has tormented Smith, and her mother, Toni, is witness to her daughter’s pain. “I’ve long stopped sleeping,” she says. “I wake up in the middle of the night, scared of what Lauren might do—to herself. She’s undone by this. I’m worried about what this has done to her.”

“Her baby is still healthy. Her toddler…is still healthy.”

Carpenter believes Smith’s case could have broad implications, both on a state and national scale. “If she were to be convicted, it would tell pregnant people in South Carolina and pregnant people in other states that prosecute these types of crimes, you are right to be suspicious of your healthcare providers, and you should think twice before you go to the doctor, which is horrifying.”

But Smith is determined to see this case through. “It just enrages me how, as a woman, as a woman of color, as a human being, carrying a baby—and to be treated like nothing, like a criminal,” Smith says. “I am telling you, I didn’t go through this for no reason.” 

She says that telling her story and having it heard has given her purpose—a reason to endure what has otherwise felt like a hopeless and neverending reality. 

“I want to prove that just because you are scared, it doesn’t mean that you give up. You have to push through the fear,” she says. “I’ve been afraid of a lot of things, but I wouldn’t be here today if I wasn’t afraid and persevered through that.”

 

 

If you or someone you love is thinking about suicide, you can call or text 988 for confidential support.


 

Neda Toloui-Semnani is an Emmy-winning journalist. Her work has appeared in numerous publications including VICE News, The Cut, and The Washington Post, among others. Her first book is They Said They Wanted Revolution: A Memoir of My Parents. Please visit www.nedasemnani.com for more information. 


Harm and Hope in Post-Roe America


My Pregnancy vs. the State of Texas

FEATURED STORY

The loss of my daughter was inevitable. What happened next was not.

BY AMANDA ZURAWSKI

I was 18 weeks pregnant when I knew something was wrong. My body was leaking thick and yellowish discharge, and my pelvis felt what I could only describe as abnormally “open.” 

A shockingly brief examination later, I was diagnosed with an “incompetent cervix”—a condition in which the cervix prematurely dilates, usually during the second trimester of pregnancy and often leading to premature birth. 

The loss of my daughter, I was told, was inevitable. What happened next was not. 

It was evident from the moment my doctor saw my bulging amniotic sac that this was not a question of if I would lose my baby—the baby my husband and I wanted so badly and had worked for 18 months with the help of science and medicine to conceive. It was a question of when.

If we had conceived the previous year when we began our journey with infertility, or if we lived in a different state, my healthcare team would have been able to treat me immediately and end my doomed pregnancy as soon as possible, without risk to my life or my health. I wouldn’t have had to wait in anguish for days for the inescapable ill fate that awaited. But this was August 23, 2022, in the state of Texas, where abortion is illegal unless the pregnant person is facing “a life-threatening physical condition aggravated by, caused by, or arising from a pregnancy.” Somehow, any medical help to make the horrific inevitability of losing my beloved child 22 weeks early less difficult qualified as an illegal abortion. 

My doctor outlined the roadmap in no uncertain terms: I could wait however long it took to go into labor naturally, if I did at all, knowing that my baby would be stillborn or pass away soon after; I could wait for my baby’s heartbeat to stop, and then we could end the pregnancy; or—most alarmingly—I could develop an infection and become so sick that my life would become endangered. Not until one of those things happened would a single medical professional in the state of Texas legally be allowed to act. It was a waiting game, the most horrific version of a staring contest: Whose life would end first? Mine, or my daughter’s?

I knew I was going to lose my baby. And I knew it could be days—or weeks—of living with paralyzing agony before we could move forward. 

Amanda and her husband Josh on their wedding day. (Image courtesy of Amanda Zurawski)

People have asked why we didn’t get on a plane or in our car to go to a state where the laws aren’t so restrictive. But we live in the middle of Texas, and the nearest “sanctuary” state is at least an 8-hour drive. Developing sepsis—which can kill quickly—in a car in the middle of the West Texas desert, or 30,000 feet above the ground, is a death sentence, and it’s not a choice we should have had to even consider. But we did, albeit briefly.

Instead, it took three days at home until I became sick “enough” that the ethics board at our hospital agreed we could legally begin medical treatment; three days until my life was considered at-risk “enough” for the inevitable premature delivery of my daughter to be performed; three days until the doctors, nurses, and other healthcare professionals were allowed to do their jobs. 

By the time I was permitted to deliver, a rapidly spreading infection had already claimed my daughter’s life and was in the process of claiming mine.

I developed a raging fever and dangerously low blood pressure and was rushed to the ICU with sepsis. Tests found both my blood and my placenta teeming with bacteria that had multiplied, probably as a result of the wait. I would stay in the ICU for three more days as medical professionals battled to save my life. 

Friends visited every night. Family flew in from across the country. I didn’t realize until nearly a month later that my doctors, nurses, and loved ones feared I was going to die. 

We still don’t know the extent of damage the wait or the infection had on my body. I’m facing months of procedures and tests to know whether my eggs or my reproductive system were permanently harmed. In fact, later this week I’m having surgery to remove the massive amount of scar tissue plaguing my uterus as a result of the infections. We don’t know yet whether the baby we want more than anything will ever be possible.

Everything that happened after my cervix dilated was avoidable, and it never should have happened. What’s worse is I’m not the only one. This will happen to many women—of all races, all ethnicities, all ages, all across the country—if we don’t fight back. 

When the six-week abortion ban in Texas passed last year and Roe vs. Wade was overturned this year, I was furious. But as someone who was then desperately trying everything I could to have a child, I never imagined it would impact me personally. I didn’t realize then the extent to which these laws would truly restrict a woman’s right to make the right decisions for herself, her body, and her future children. I didn’t realize the laws I was angry about would soon prevent me from safe access to healthcare. I didn’t realize these laws would directly prevent doctors from being able to protect their patients in so many ways. 

But it’s not just me, and it’s not just Texas. As more states pass similar laws—let alone if members of Congress enact a federal ban on abortion—my story will become the norm. The number of people who will be hurt will be too much to bear, and we have to do something to stop it. 

Being angry isn’t enough. To enact change, we must vote and make sure our elected officials know that this is not okay and we will not allow it.

We named our daughter Willow—after the tree that’s known for its ability to withstand adversity and fight against harsh conditions. With our Willow, we’ll show our strength and we will fight. 


Amanda Zurawski lives in Texas with her husband, Josh, whom she met in preschool in their home state of Indiana, and their dogs Paisley and Millie.

Stay tuned for more United States of Abortion Stories. And read more here about the medical facts in Amanda’s case. 

For abortion access resources and to create a voting plan for the 2022 midterm elections, visit iwillharness.com/abortion.

Video Credits

Director: Amy Elliott
Editor: Ellen Callaghan
DP: Pat Blackard

Camera: Tony Lopez
Audio: Chris Kupeli
Field producer: Karen Bernstein
Music: “Come On Doom, Let’s Party”
Written and performed by Emily Wells
Courtesy of Thesis & Instinct
By arrangement with Terrorbird Media


This film is a project of The Meteor Fund, and produced in partnership with Harness; with support from Pop Culture Collaborative.


"You Can't Just Tell Someone to Go Home and Pass an 18-Week Fetus. That's Not Safe."

FEATURED STORY

The doctors behind Obstetricians for Reproductive Justice break down the medicine behind Amanda’s case—and what should have happened

BY MEGAN CARPENTIER

Amanda’s case highlights a key problem about being pregnant in an anti-abortion state in post-Roe America. Vague laws that prioritize the “life” of even a non-viable fetus above the health or life of the person carrying it prevents doctors from providing crucial care in dangerous and life-threatening situations. 

That’s because, until September 2021, there was one red line in the law that even the most anti-abortion state legislators could not cross: There had to be exceptions to any and every abortion restriction, even after fetal viability, “for the preservation of the life or health of the mother.”

But last year, when the U.S. Supreme Court allowed the state of Texas to implement its ban on abortions after six weeks—10 months before it overturned Roe v. Wade—it allowed the state to set a new standard. 

Under Texas’ S.B. 8, the only time an abortion might be allowed after cardiac activity is detected would be in the case of a “medical emergency”…which the statute does not define. (Another section of the state’s abortion law does define a medical emergency as a condition that “places the woman in danger of death or a serious risk of substantial impairment of a major bodily function,” though medical providers and lawyers say it’s unclear whether it applies to S.B. 8 and notes that a woman’s health is a better standard.) But because S.B. 8 created a private right of action, even a doctor who can absolutely prove there was a medical emergency would still have to go to court to make their case if sued.

These legal burdens made the situation for Amanda’s doctors untenable. Her condition was likely to cause a “medical emergency,” but they couldn’t treat it as one until it became much more dangerous for her.

Drs. Jenn Conti, Heather Irobunda, and Jennifer Lincoln of Obstetricians for Reproductive Justice have spent time with Amanda and her husband. They sat down with The Meteor to explain the medical facts, and what patients are facing.

Tell us more about Amanda’s diagnosis. What is an “incompetent cervix” and how common is it?

Dr. Heather Irobunda: Cervical insufficiency (or incompetency) happens in about 1% of all pregnancies. However, it happens in about 20% of people who end up having miscarriages [in the second trimester]. 

Dr. Jennifer Lincoln: By definition, this is a painless cervical dilation, as opposed to typical preterm labor or labor, where you have contractions and it hurts. With cervical insufficiency, you don’t know, or there might just be these vague symptoms like Amanda had, where she’s like, “Something just doesn’t feel right.”

Dr. Irobunda: Sometimes a patient will come in for a routine ultrasound around 20 weeks, and then we may notice that their cervix is shortened or is dilated. 

Dr. Lincoln: Sometimes what we’ll see is a cervix that is so completely shortened that it’s non-existent anymore, and it’s also dilated. Or, when we look in the vagina with the speculum, all we see is the amniotic sac because it’s basically prolapsed down past where the cervix is. That was the case for Amanda when she went in.

Dr. Irobunda: It can happen so quickly: You can evaluate a patient a week or a few days before and everything looks fine. And then all of a sudden, your patient comes back in and is like, “I feel, like, a lot of pressure. Things feel weird. Can you check me out?” And then their cervix can be completely dilated and there’s no real reason. 

Dr. Lincoln: But, as you can imagine, the term “cervical incompetence,” like many obstetric terms we have, is a really terribly guilt-producing word.

What is the normal course of treatment?

Dr. Irobunda: What we can do depends on how long the cervix is. If the cervix is just shortened and not open, we can do something called a rescue cerclage, which is a stitch we basically put in the cervix to try to keep the cervix closed until term. But if there’s pretty much nothing left and it’s dilated, unfortunately, there’s not much that we can do to close the cervix back up or prevent it from dilating more.

Dr. Lincoln: Sometimes part of the fetus is even in the vagina. Or it’s not possible to treat with cerclage because they’re showing other signs of infection, and if we were then to put a stitch in their cervix and basically sew in an infected bag of water and placenta and fetus, they would be at a much higher risk of having complications and going on to be septic.

Dr. Irobunda: In these cases, this is going to, unfortunately, end up with a baby that will not be alive. Depending on when, there may be the option of waiting and seeing how long it takes for your body to kind of kick the rest of this into gear and deliver the fetus that had passed on (which is called “expectant management” and is more common in earlier miscarriages).

Dr. Lincoln: But you can’t just tell somebody to go home and expectantly wait to pass an 18-week size fetus. That’s not going to be safe for anybody. The risk of infection is so high, especially with an exposed membrane and bag of water in the vagina. And then Amanda’s ruptured.

Dr. Irobunda: In my state, New York, there’s also the option that we can help induce this miscarriage by giving you medications in the hospital while we are monitoring you. Then it would come out of the vagina and we can give you as much pain medication as you need to get through that. And then the other option is to do a procedure called a dilation and evacuation, in which we would sedate you and then we use various instruments to remove what’s left of the pregnancy.

Dr. Lincoln: What should have been done without all these laws is not a difficult question. In a case where you’ve got somebody who has no cervix left, their bag of water was exposed in the vagina for days, now their bag of water is broken, every OB-GYN is trained to know that all of our patients look very stable until the moment they fall off that cliff and they’re not.

You’re talking about sepsis?

Dr. Lincoln: Yes. Patients can go from being healthy and fine to being septic in a matter of an hour. If you walked in like she did, we would say, “We need to move forward with delivery. You are stable now, this could very much change, and so we need to get the infection out of you, which unfortunately means the placenta and the fetus.” And it’s hard because these are people who want the baby. Sometimes you just wish you could leave people alone or say, “Let me give you a few days to decide.” In this particular situation for Amanda, I don’t think any OB-GYN would have felt comfortable doing that.

Dr. Irobunda: The longer that person remains pregnant, number one, it increases the risk of bad outcomes in terms of things like infection, sepsis, bleeding, and hemorrhage. But it also does a lot mentally to that patient and the family, just knowing that this pregnancy is a miscarriage and that it is not going to end well. We need to minimize the suffering of those involved. It’s not right.

What do you see as the long-term effects of these laws that prohibit or inhibit doctors from performing abortions?

Dr. Lincoln: These laws are tying our hands and, eventually, will end up killing patients. When these people say, “Well, there’s an exception so that’s OK,” well, actually, there’s not. The bottom line is that when somebody can go from being healthy to dead in 30 minutes, how are we supposed to wade through all of that with lawyers who have no clue? I guarantee you they are not awake at 2:00 AM. 

Dr.  Irobunda: It’s really hard to make sweeping laws about things like abortion because all these cases are different. The medicine is not black and white, [and] these laws don’t give anybody any wiggle room. We’re putting people in danger.

Dr. Jenn Conti: These laws affect every aspect of how women’s healthcare is handled from here on out. Once you start criminalizing doctors for doing their jobs, no one is safe—because there’s this paralyzing fear amongst healthcare providers that, if anything goes wrong involving pregnancy, someone somewhere could accuse them of illegal activity. And that’s all that matters in states like Texas: an accusation of guilt.   

What would your advice be for other women in these circumstances? 

Dr. Conti: If you’ve experienced post-Roe harm, I first want to offer my sympathy to you, because you didn’t deserve that. 

If you want to share your story as a way of giving yourself a voice and fighting back, you can head to our website and use the contact form at the bottom of the page to either share anonymously or indicate that you are interested in becoming part of future ORJ storytelling projects.

You can read Amanda’s full story, in her own words, here. Stay tuned for more United States of Abortion stories. 

For abortion access resources and to create a voting plan for the 2022 midterm elections, visit iwillharness.com/abortion.


Megan Carpentier is currently an editor at Oxygen.com and a columnist at Dame Magazine. Her work has been published in Rolling Stone, Glamour, The New Republic, the Washington Post, and many more.


I Asked 61 Colleges If They Would Pay for Students to Travel for an Abortion. Only Five Hinted That They Might.

BY TALIA KANTOR LIEBER

On the morning that Roe v. Wade fell, I turned to my father and declared I would not be attending college in a state where I could not legally have an abortion. 

Strikethroughs began to appear on my running list of potential schools, a document that is growing and shifting as I enter my junior year of high school. I knew I was in a position of privilege: If I did go to college in one of the 14 states where abortion was banned, I’d have the financial means to travel if I needed to. But that isn't true for many of my friends and classmates. And even with the ability to pay, there are so many students—myself included—who don’t want to take that chance. In fact, a recent survey found that over a third of students seeking higher-ed degrees say the Dobbs decision will affect which institution they attend. 

So an idea occurred to me. After the Supreme Court’s ruling, many private companies promised to cover the travel expenses of employees seeking out-of-state abortions (much to the chagrin of some state lawmakers). Why couldn’t colleges do the same? After all, shouldn’t the aim of any school be to support its students, and rid them of any obstacles disrupting their education? 

I decided to compile a list of schools in states where abortion is banned (or at high risk of being banned) and ask them one simple question: Would they cover the travel expenses of students forced to seek an out-of-state abortion? 

Here’s what I found.

Of the 61 schools I surveyed, only five gave me anything close to a yes. The College of Wooster, Kenyon College, Oberlin College, the University of Idaho, and Vanderbilt University referenced “emergency” or “Student Success” funds that students could potentially access for abortion care or abortion-related travel expenses.  

Twenty-one schools—mostly smaller, private institutions—gave ambiguous answers, either saying they were still developing plans or simply stating their commitment to their students. 

Nine schools—mostly large public universities—said that they would not pay for travel or had not discussed the topic. 

And 26 schools, almost evenly split between public and private, did not respond to repeated requests for comment, even as their students began to set foot on campus. 

All in all, the vast majority of the schools I called (which, by rough calculations, are attended by at least 480,000 students who could become pregnant) were not ready to help those students access crucial abortion care. 

Read the full list of schools’ responses here.

SO WHY ARE SCHOOLS NOT STEPPING UP THE WAY PRIVATE COMPANIES DID?

Schools are scrambling to create policies around abortion travel, and the reasons are complex. First, there are legal fears, especially for public universities whose budgets are controlled by the same legislatures that banned abortion in the first place. States such as Missouri have laws in place that prohibit the use of public funds for “performing or assisting abortion.” A public institution’s money may very well fall under that category. Other states’ abortion laws are too in flux, or not definitive enough for schools to create concrete policies.

Some states have even begun to explore legislation that outlaws crossing state lines for an abortion. According to Kimberley Harris, a constitutional law professor at Texas Tech University School of Law, “there is supposedly a constitutional right of interstate travel, or at least there has been in the past, but we’ve kind of seen what can happen with constitutional rights.” Bans such as these could even prohibit private schools from supporting abortion-related travel. 

And colleges must not only consider the question of where students may go, but the details of their abortions as well. Harris notes the case of Sidley Austin, a law firm that promised to pay for employees to go out-of-state to acquire abortion pills. The firm is facing legal threats from a group of Texas Republicans who claim that Sidley Austin facilitated “illegal” abortions. In a letter to the firm, they argued that “criminal prohibitions extend to drug-induced abortions if any part of the drug regimen is ingested in Texas, even if the drugs were dispensed by an out-of-state abortionist.” If a school were to pay for a student’s abortion travel, says Harris, it could leave the institution susceptible to a similar legal threat. 

These questions of liability, Harris explains, may prevent many schools—especially public institutions or those with religious affiliations—from paying. “A lot of colleges are very risk-averse when it comes to this,” she says. “There is a whole lot of fear.” Paying for students’ travel could fall under the category of aiding or abetting abortion, an action that civilians can now be rewarded for reporting in certain states. 

That fear may also affect a college’s medical providers or counselors. Telling students abortion is legal in neighboring states has little risk, but Harris believes that providing a direct referral could be riskier. “I think it will be more hinted at,” she said. In other words, a pregnant student could ask their school for support and be turned away—not only without medical care or travel funds, but without any clear advice.

University of Kentucky, one of many institutions yet to clarify whether it will help students. (Image by Michael Hickey via Getty Images)

THE CHAOS IN STATE ABORTION LAW—AND HOW IT AFFECTS SCHOOLS

As the answers from schools came in, I felt outraged thinking about the students who would have no institutional support if they needed an abortion. But I also noticed that these schools were just as confused as the students applying to them. Many gave me unclear or placeholder statements, likely because this is uncharted legal territory for them. Beyond travel, colleges are facing an onslaught of questions about abortion in a post-Roe world: How will they protect students' privacy given that, as Jessica Valenti has reported, college students are often not covered by medical privacy laws? Will lack of access to abortion impact other reproductive or medical care at college health centers? And will health centers themselves understand how to respond to the new laws? (A Chronicle of Higher Education survey implies they may not.)

Even the use of emergency funds raises questions about records left by financial transactions, which could serve as legal evidence. And it’s unclear whether students on campuses with funds are even aware those resources exist; colleges generally have an alarming track record when it comes to helping their students put emergency funds to use.  

The outlook is grim. But as I spoke to representatives from the schools surveyed, I began to feel sympathetic toward each party involved. Administrators are creating plans with incomplete legal information and an unclear sense of what the ramifications could be. College students are coming to campus unsure of where their school stands or what to do if they or someone they know needs an abortion.

But one thing is clear: This fall, in every state, students will show up on campus and they will, for a variety of reasons, seek out abortions.

What is less clear is what colleges will do to protect them. 

WHAT THE SCHOOLS SAID

The 61 colleges and universities in this list are located in 21 states which have either enacted abortion bans or are among those considered likely to do so.. (We also included Florida, which constitutionally protects abortion but has enacted a 15-week ban likely to impact students.) These schools are a mix of the most highly attended schools from each state and smaller, highly-ranked liberal arts schools. Like the American college landscape in general, they include public, private, and religiously affiliated institutions.

I asked each school: Will you pay for the travel expenses of students who need to seek abortions out of state? (Note: I categorized as a “yes” any school with a fund or support that would allow this travel, even if the school itself stopped short of explicit support of abortion travel or made clear that its policy is not to inquire about how the funds are used.)

 

Agnes Scott College

Decatur, Georgia

No comment.

A spokesperson from Agnes Scott College stated that “there is no comment at this time.” 


Arizona State University

Tempe, Arizona

No. 

If abortion were to become illegal in the state, Arizona State University told us it will not pay for the travel expenses of students who seek access to abortion.


Auburn University

Auburn, Alabama

No response. 

Auburn University did not respond to requests for comment.


Baylor University

Waco, Texas 

No response. 

Baylor University did not respond to requests for comment. 


Berea College

Berea, Kentucky

No response.

Berea College did not respond to requests for comment. 


Brigham Young University

Provo, Utah

No response. 

Brigham Young University did not respond to requests for comment. 


Case Western Reserve University

Cleveland, Ohio

Under review. 

Case Western Reserve has not stated whether it will cover students’ travel expenses. A university spokesperson stated that the school is “carefully assessing the situation and has convened a task force to assess all aspects of the decision and its implications for our faculty, students and staff.”


Centre College

Danville, Kentucky

Under review. 

A spokesperson for Centre College said the college is “studying the legal restrictions and requirements, and they are in flux until the courts in Kentucky make final decisions on what bans are actually in place.” 


Clemson University

Clemson, South Carolina

No response. 

Clemson University did not respond to requests for comment.


College of Wooster

Wooster, Ohio

Yes, through an emergency fund. 

A College of Wooster spokesperson stated that “if a student needs health care services that are not available locally, the College will support them in accessing care as nearby as possible. For some types of reproductive health care, such as abortion, that may mean assisting a student in accessing care in another state, for example. As for all medical care, students are eligible to apply for emergency funds from the Dean of Students’ office to support urgent reproductive healthcare, including abortion.” In a follow-up statement, ​​the spokesperson said, “Students are able to request emergency travel funds from The College of Wooster for any reason. We will not require documentation of the specific need out of respect for the privacy of the individual.”


Cornell College

Mount Vernon, Iowa

No response. 

Cornell College did not respond to requests for comment.


Denison University

Granville, Ohio 

Under review. 

Denison University has not explicitly stated whether it would cover students’ travel expenses. A spokesperson stated, “We are still assessing both our existing resources and potential new resources. We do anticipate expanding our resources to ensure our campus community members have access to the health care they need.”


DePauw University

Greencastle, Indiana

No response. 

DePauw University did not respond to requests for comment.


Earlham College

Richmond, Indiana

Under review. 

An Earlham College spokesperson said that the school is “evaluating all of our options to support a woman's right to reproductive healthcare” but could not provide an answer yet on whether it will reimburse students for travel expenses.


Emory University 

Atlanta, Georgia

Unclear. 

Emory University has not explicitly stated whether it will cover students’ travel expenses. A spokesperson pointed to a statement by Student Health Services, which reads,Students should contact EUSHIP [Emory University Student Health Insurance Plan] directly to learn what support resources are available when a medical procedure is not available locally.”


Florida State University

Tallahassee, Florida

No response. 

Florida State University did not respond to requests for comment.


Furman University 

Greenville, South Carolina

Unclear. 

Furman University has not stated whether it would cover students’ travel expenses. A spokesperson for the school pointed to a statement from President Elizabeth Davis, which says, “For our students, Furman will continue to provide education about and access to contraception and other healthcare services, as well as counseling for students who have pregnancy concerns, including providing information about prenatal care and available options for terminating a pregnancy.”


Georgia Institute of Technology 

Atlanta, Georgia

No response. 

Georgia Institute of Technology did not respond to requests for comment.


Grinnell College

Grinnell, Iowa

No response. 

Grinnell College did not respond to requests for comment.


Hanover College

Hanover, Indiana

No response. 

Hanover College did not respond to requests for comment.


Hendrix College

Conway, Arkansas

Unclear.

In July, a Hendrix College spokesperson said the school could not give an answer because the “policy review/revisions relating to the coming semester will take place over the next several weeks, as they do every summer.” They did not reply when asked for a follow-up comment in August.


Indiana University-Bloomington

Bloomington, Indiana

Unclear. 

“Until state legislation is passed, it’s too premature for us to determine if or how IU might be impacted,” said a spokesperson for Indiana University-Bloomington in July. The state has since enacted an abortion ban, but the university told us in August that it is “still assessing the impact and assessing any steps we may need to take for our employees.”


Kenyon College

Gambier, Ohio

Yes, through a "Student Success Fund." 

A Kenyon College spokesperson sent us a statement that the school’s senior staff had made addressing reproductive health. It reminds students of a "Student Success Fund that offers financial assistance to students for a range of circumstances. Students may apply for these funds if they are experiencing hardship of any kind, whether or not they qualify for other forms of financial aid.


Louisiana State University

New Orleans, Louisiana

No response.

Louisiana State University did not respond to requests for comment.


Oberlin College

Oberlin, Ohio

Yes, through the use of emergency funds.

In a statement on reproductive health, Oberlin College President Carmen Ambar said: “We will also continue to work with the Oberlin Doula Collective, which provides support and community for those seeking abortions. And while we have never inquired about the exact purpose of a student’s use of emergency funds needed for health procedures, these funds will still be available to those who meet its criteria.”


Ohio State University

Columbus, Ohio

Unclear, implied no. 

Ohio State University “remains deeply committed to the health, safety and well-being of our students… and is closely examining the decision from the Supreme Court and changes in state law,” said a university spokesperson. “If necessary, Ohio State and the medical center will make adjustments to services, course offerings or resources to be in compliance with the law…” The spokesperson also mentioned the University's health care plan for its faculty and staff, which cites the Ohio law that public funds can not legally be spent on elective abortions—amounting to an implicit, if not explicit no.


Ohio Wesleyan University

Delaware, Ohio

Under review. 

Ohio Wesleyan University has not explicitly stated whether it would cover students’ travel expenses. A spokesperson said that the school is “considering options to assist students, faculty, or staff who need access to women’s reproductive services that may be more inaccessible as a result of the recent court decision. We will be providing more information to our community when it is available.”


Purdue University

West Lafayette, Indiana

No response. 

Purdue University did not respond to requests for comment.


Rhodes College

Memphis, Tennessee 

Under review. 

Rhodes College has not stated whether it would cover students’ travel expenses. A spokesperson said, “President Collins has assembled a task force to help the college address critical issues and questions resulting from the Supreme Court’s June 24 decision. They will begin meeting soon.”


Rice University 

Houston, Texas

Under review. 

Rice University has not stated whether it would cover students’ travel expenses. A university spokesperson highlighted a statement that former President David Leebron had made, which says that the school is “exploring how we can best continue to appropriately support the reproductive rights of our community, including access to abortion services. We…will share relevant information in as timely a manner as possible.


Southern Methodist University

Dallas, Texas

No response.

Southern Methodist University did not respond to requests for comment.


Southwestern University 

Georgetown, Texas

No.

Southwestern University told us that the school will not pay for the travel expenses of students seeking access to abortion.


Spelman College

Atlanta, Georgia 

No comment.

Spelman College declined to comment on whether it would cover students’ travel expenses. A university spokesperson stated that the school is “closely monitoring the Title IX proposed rules and will make necessary updates based on the final regulations. Title IX has always provided protections regarding pregnancy and parenting. We will continue to assist our community members in accordance with the Title IX regulations and the values of Spelman College.”


Texas A&M University 

College Station, Texas

No.

Texas A&M will not pay for its students’ travel expenses when seeking access to abortion. According to a spokesperson for the university: “Student Health Services does not supply funding for travel or medical care outside of our health center. It is only for on-campus medical needs; no surgeries are performed there (nor have they ever). So, for example, if a student had cancer, they would have to seek treatment elsewhere.”


Texas Christian University

Fort Worth, Texas

No comment.

Texas Christian University has not stated whether it would cover students’ travel expenses. A spokesperson told us they did not have information to share.


Transylvania University

Lexington, Kentucky

No comment.

A spokesperson for Transylvania University said that, to their knowledge, the school has “not held any discussions on the topic.”


Tulane University 

New Orleans, Louisiana 

No response.

Tulane University did not respond to requests for comment.


University of Alabama 

Tuscaloosa, Alabama

No response.

The University of Alabama did not respond to requests for comment.


University of Arizona

Tucson, Arizona

No response.

The University of Arizona did not respond to requests for comment.


University of Arkansas

Fayetteville, Arkansas

Unclear.

The University of Arkansas has not stated whether it would cover students’ travel expenses. A spokesperson for the university stated, “The Pat Walker Health Center on campus is dedicated to supporting the health and well-being of the campus community and will abide by state and federal law.”


University of Florida

Gainesville, Florida

No.

Asked whether it might cover students’ out-of-state travel, a spokesperson for the University of Florida said that they were “not aware of any such plans.”


University of Georgia

Athens, Georgia

No response.

The University of Georgia did not respond to requests for comment.


University of Idaho

Moscow, Idaho

Yes, though only through the use of donated (not school-provided) emergency funds.

A spokesperson from the University of Idaho said that the school “does not provide money specifically for students to travel for an abortion. The university does have emergency funds available to students. These small allocations of donated dollars (typically a couple hundred dollars) are given out without verification of need or use. While it is possible a student could use it for this, the university does not get involved in the medical decisions of our students….We provide information and resources that allow students to make informed and independent decisions.”


University of Iowa

Iowa City, Iowa

No response. 

The University of Iowa did not respond to requests for comment.


University of Kentucky

Lexington, Kentucky

Unclear. 

A spokesperson stated, “UK’s insurance plans do not cover elective abortions. We are in the process of analyzing the impacts of the Supreme Court’s decision as we move forward in compliance with state law.”


University of Miami

Miami, Florida

No response. 

The University of Miami did not respond to requests for comment.


University of Mississippi 

Oxford, Mississippi

No.

The University of Mississippi will not pay for the travel expenses of students seeking access to abortion.“The university only covers travel expenses for students when they are traveling on university-related business,” said a spokesperson.


University of Missouri 

Columbia, Missouri

No. 

The University of Missouri will not pay for the travel expenses of students seeking access to abortion. A spokesperson provided further context, explaining that “prior to the Dobbs decision, Missouri state law that was already in place prohibits university funds, employees and facilities from being used in any way to perform abortions.”


University of North Dakota 

Grand Forks, North Dakota

No.

The University of North Dakota will not pay for the travel expenses of students seeking access to abortion. The school “does not have any policies in place to cover the cost for travel,” said a spokesperson.


University of Notre Dame

Notre Dame, Indiana

No response.

The University of Notre Dame did not respond to requests for comment.


University of Oklahoma

Norman, Oklahoma

Unclear. 

The University of Oklahoma has not stated whether it would cover students’ travel expenses. A spokesperson said the school’s “top focus is supporting the needs, aspirations, and well-being of our students. While the university must and will comply with all applicable laws, we remain unwavering in our commitment to serve our students to the fullest extent possible.”


University of South Carolina 

Columbia, South Carolina

No response.

The University of South Carolina did not respond to requests for comment.


University of South Dakota

Vermillion, South Dakota

No response.

The University of South Dakota did not respond to requests for comment.


University of Tennessee 

Knoxville, Tennessee

No. 

The University of Tennessee told us that it will not pay for the travel expenses of students seeking access to abortion.


University of Texas at Austin

Austin, Texas

Unclear.

The University of Texas at Austin has not stated whether it would pay the travel expenses of students seeking abortion care. A spokesperson noted that University Health Services “does not dispense abortive medications, provide abortion services or obstetrical/prenatal services.”


University of Texas at Dallas

Dallas, Texas

No response.

The University of Texas at Dallas did not respond to requests for comment.


University of Utah

Salt Lake City, Utah

No.

The University of Utah told us that it will not pay for its students’ travel expenses when seeking access to abortion.


University of Wyoming

Laramie, Wyoming

No response. 

The University of Wyoming did not respond to requests for comment.


Vanderbilt University 

Nashville, Tennessee

Yes, through a “Student Critical Support Fund.”

A Vanderbilt University spokesperson pointed to a statement from the school, which explains that students will have the opportunity to apply for financial support from the “Student Critical Support Fund, formerly the Student Hardship Fund, that aids with unexpected expenses, including costs related to any medical procedure not available in Tennessee. Details on how to apply will be shared in the coming weeks.”


Washington University at St. Louis

St. Louis, Missouri 

No comment. 

Washington University at St. Louis declined to comment beyond a statement made by the school’s Chancellor Andrew Martin and Dean David Perlmutter, which reads that “we must keep our focus squarely on the mission of the university — research, education, and patient care.”


Wofford College

Spartanburg, South Carolina

No response. 

Wofford College did not respond to requests for comment.


Don’t see your school on this list, but wondering what its policy might be? Call the Dean of Students—or the department in charge of student life—or the President and ask. Here’s the wording I used: Will [insert college] cover travel expenses for students who travel out of state to seek an abortion? 

If you do reach out to your administrators, send us an email at [email protected] and let us know what they say. As abortion laws change, we’ll be updating this list—with more states—this fall.


Emily Ladau: Disability is part of the human experience

I was born in 1991—just a year after the Americans with Disabilities Act became law—with a genetic joint and muscle disorder called Larsen syndrome. My mom has it, too. My disability has always been part of my life—a natural state of being.

As the only kid with an apparent disability in my elementary school, I learned quickly what it meant to exist in a body that’s considered “wrong.” I’d often shy away from talking about my disability, and the biggest compliment you could pay me was that you didn't think of me as disabled.

But at age 10, I found myself heading in the complete opposite direction, beginning to embrace myself and opening up about my experience as a disabled person in a very public way: by appearing on “Sesame Street.” Hanging out with Big Bird, Elmo, and Oscar the Grouch was a whole lot of fun, but the best part was beginning to find my voice as an advocate. The experience of educating about disability on a national platform showed me the power of storytelling and communicating as a way to break down stigma and debunk stereotypes.

Though I’d planned to become a high school English teacher, the sparks of disability advocacy that started when I was young began to turn into flames. Midway through college, my plans began to shift as I realized that I wanted to pursue advocacy as a career. So, a week after graduation, I went to Washington, DC, to complete an internship program led by the American Association of People with Disabilities. But I gained so much more than work experience. I gained an understanding of disability as an identity and a sense of belonging to something so much bigger than just me. In finding the disability community, I began to find myself.

As my passion for activism grew, so too did my realization that if we want the world to be accessible to the disability community, we must make disability accessible to the world. That's not to say I believe disabled people exist simply to be teachable moments, but rather that I believe in meeting people where they're at in a world where disability remains so unfamiliar to so many.

But the disability experience isn’t just my story, or my mom’s story, or any one person’s story. It’s the story of one billion people around the world. And for so many of us, our stories are steeped in ableism, in a lack of acceptance of who we are. My hope is that my new book Demystifying Disability: What to Know, What to Say, and How to Be an Ally, will help to shift the paradigm to a more inclusive world.

To do this, we first need to understand and recognize ableism and how it manifests in the world.

SO WHAT IS ABLEISM?

Ableism is discrimination and prejudice against people with disabilities, though that’s not quite enough to convey its full weight. So here’s the definition I use. “Ableism is attitudes, actions, and circumstances that devalue people because they are disabled or perceived as having a disability.”

To most of society, ableist beliefs and behavior don’t raise any red flags because they’re woven into the fabric of everyday life, simply accepted as the norm. For disabled people, though, ableism is always there—a part of our lives that never disappears, manifesting in endless forms ranging from broad, systemic discrimination to individual interactions.

HIDDEN DISCRIMINATION EVERYWHERE

Here’s an example. Less than 25 percent of New York City subway stations have elevators. This qualifies as systemic ableism, because the lack of accessibility limits the freedom of disabled people to get around. I do occasionally brave the subway, but it’s not uncommon for me to be the only wheelchair user on the platform. Strangers will express surprise, making individual ableist comments such as, “Wow, it’s amazing how you get around in that chair.” Of course, if every subway station had an elevator, it wouldn’t be considered anything special to see wheelchair users on the train. But many people operate on the assumption that disabled people don’t have full lives that might require public transportation. And if this assumption weren’t embedded in society’s thinking, making sure every subway station has an elevator would be more of a priority. See what I mean? Ableist assumptions lead to systemic ableism, which lead to further discrimination.

Think about it. There are still laws on the books that explicitly discriminate against disabled people. The nearly century-old Fair Labor Standards Act was created to be supposedly “fair” for everyone, but people with disabilities are the only population, as named in the law, who can legally be paid far less than the minimum wage. Even worse, this happens in segregated work environments known as “sheltered workshops” where disabled people are paid a few cents per hour to do repetitive tasks—the same tasks that nondisabled people would be paid at least minimum wage to complete in a regular workplace.

Advocates in favor of sheltered workshops and subminimum wages argue that such things are necessary because the disabled people who work in these conditions would otherwise have no job prospects. Organizations that run sheltered workshops (like Goodwill—sorry, thrifters) think they’re doing a good deed while getting a good deal on labor. But pennies for piecework isn’t acceptable just because the workers are disabled. It’s ableist. Instead of having such low expectations for disabled people, what if we finally left the past behind and demanded fair pay and inclusive workplaces for all?

THE WORLD I WANT

Fighting back against ableism in its many iterations feels like playing a never-ending game of whack-a-mole. Most of the time it’s nondisabled people who take issue with my anti-ableism advocacy. If I speak up about a place that I can’t get into because I use a wheelchair, I’m called a complainer. If I mention that a line in a play I’ve just seen was, in my opinion, ableist, I’m told I’m overthinking things. If I think that a news story about a disabled person overcoming an obstacle is condescending and then comment on it, I’m accused of being bitter and coldhearted. But it’s not bitterness that drives me; it’s my passion to move toward a more accepting, loving, equitable world.

If you’re just starting the journey of figuring out accessibility, there will be a learning curve. After all, accessibility can take many different forms—handrails to hold on to in a bathroom; transcripts for a video or podcast; a website that can be navigated with software that reads text on the screen; using plain, clear language in a document. But I promise it’s not that complicated. A good first step is to do some research: Two of my go-to resources for finding answers are the ADA National Network and the Job Accommodation Network (JAN).

If you’ve been ableist, I don’t want you to feel dismissed for that out of hand. I agree with filmmaker, consultant, and streamer Dominick Evans, who tweeted about ableism: “It’s embedded in our culture, and I had to learn to be better, so how can I expect nondisabled people to know how to be better? What gets me is when people learn the harm they’ve caused, and double down about it.”

I believe that you can do better. We all can.


Emily Ladau is a disability rights activist, writer, and speaker. She is the editor in chief of Rooted in Rights and co host of “The Accessible Stall" podcast and her writing has appeared in The New York Times and HuffPost. A founding member of The Meteor collective, her new book, Demystifying Disability: What to Know, What to Say, and How to Be an Ally, is out now.

Excerpt from DEMYSTIFYING DISABILITY: What to Know, What to Say, and How to Be an Ally.
Copyright © 2021 by Emily Ladau.
Published by Ten Speed Press, an imprint of Penguin Random House.

Illustrations by Bianca Alvarez