“It hurt,” my friend told me. “They don’t tell you that it hurts.”
Her voice came heavy through my headphones as I scrubbed the dinner dishes. “Like, I could feel the needle going through all the layers—skin, fat, muscle—and I could feel when it entered my uterus. It just felt so wrong.”
My hands fumbled the dish they had been washing. “Jesus,” I muttered into the phone.
My friend had been nervous to do the amniocentesis. But she had felt a deep and urgent need to know, as she put it, if the baby was “okay.” And several weeks later, she got her answer. Not the one she wanted, but the one she had feared—that the fetus she had tried to conceive for over a year, for whom she had spent thousands of dollars on fertility treatments—this second child for whom she had longed, whose conception she had celebrated, whose impending arrival she had included on the family Christmas card—had a genetic condition. She had two weeks to decide what to do.
The condition wasn’t one of the severe, life-limiting ones. There’d be no lungs missing, no holes in the heart, no shortened lifespan or prolonged suffering. While there were some potential physical impacts, like low muscle tone and feeding difficulties, the main characteristic of the condition was the chance for mild to moderate intellectual disability or autism.
“So college would be out of the question,” my friend said mournfully.
The comment tugged at something in me. I set the sponge down. Carefully, I asked my friend, “But is college the measure of a good life? Do you think it would be possible for this baby to have a fulfilling, meaningful life without going to college?”
“Of course,” she hastened. “But, you know…”
But, but, but…
*
So much of contemporary parenting centers around achievement. From early milestone tracking apps to language immersion elementary schools to cultivating a well-rounded volunteer and extracurricular portfolio, many parents, especially privileged ones, engage in a feverish rush for achievement, itself an inherently normative construct. The chase starts young, with a rug rat race of Montessori toys, organic food, costly soccer camps. Elite college admission has long been regarded as the end goal, the ultimate accomplishment and marker of successful parenting. While the Varsity Blues scandal exemplified the dubious lengths to which some parents will go in this pursuit, the success-at-any-costs mentality is not isolated to the super wealthy: one in four parents admits to cheating in some part of the college admission process. Yet outside of blatant cheating, we tend not to question the fundamental framework or its harmful impacts on parents, children, and society. Instead, we simply call it “wanting what’s best.”
A fetus with a congenital anomaly throws a potential wrench in the entire achievement paradigm.
In the wake of the overturn of Roe vs. Wade, a slew of media stories appeared featuring abortions in instances of severe fetal anomaly. Perhaps unintentionally, these stories helped to further the narrative of anomaly as tragedy, and strengthen an implied division between “justified” and “unjustified” abortions, placing disability among the qualifiers for the former.
However, in cases of less life-limiting fetal anomaly with the potential for disability, repeated studies have revealed inadequate counselling, with a pro-abortion bias, on the part of medical professionals. Termination is often framed as the “responsible thing to do,” citing “worse quality of life” of the fetus and “burdens” on the family and the whole of society.
What this discrimination and stigma amount to is an uncomfortable truth: few things other than disability could turn a wanted pregnancy into an unwanted one.
I have been deeply pro-choice my whole life. So when my friend told me about still feeling the baby move inside her, about how guilty every kick made her feel, I was surprised at the way my breath caught in my throat. Surprised at how I had to steady myself on the kitchen counter.
Selective abortion throws many progressives into such an ethical quandary, as it seems to pit disability rights against reproductive justice—a woman’s right to bodily autonomy against a disabled person’s right to life. It doesn’t help that the anti-abortion movement has recently co-opted disability rights language to advocate for selective abortion bans, with Justice Clarence Thomas infamously likening the practice to eugenics.
Disability rights advocates have pointed out that these same pro-life voices rarely call for increasing services and support for people with disabilities after birth. Motivations behind selective abortion bans thus reveal themselves to be less about helping disabled people and more about restricting pregnant people’s choices and forcing birth.
It’s possible, if difficult, to advocate for the rights of both groups. Disability rights scholars have suggested a framework that includes bringing more unbiased information to pregnant people facing fetal anomaly; increasing supportive services, such as funded therapies and medical equipment, for families navigating disability; and expanding our whole idea of what is “healthy” and “normal” to include genetic variation and difference.
In practice, the two have been harder for me to untangle.
*
My daughter couldn’t wait to be born. She was conceived early in my relationship with her father, on an implausible day of my cycle. She then arrived three weeks early, barely five pounds and covered in a pustular rash that caused a team of doctors to flock around her, snapping photos and murmuring.
It was February 2020. No one had any idea what was coming, in the world or in her body.
We took her home, rubbed expensive, medicated ointments on her skin and stared into her lake-blue eyes. Her rash alarmed me, the way it blistered and crusted. My daughter didn’t look like the cherubic infant I’d envisioned. There was, I feared, something wrong with her.
When the rash hadn’t cleared up by her two-week check-up, we were referred to dermatology, who in turn referred us to genetics. They told us the rash was a characteristic of a rare genetic disorder. Its wide range of impacts included skin discoloration and rashes, dental and ocular abnormalities, alopecia, nervous system disorders, and learning and intellectual disabilities. We were given a pamphlet and told to watch for seizures.
I experienced this in a haze, the rising pandemic a background noise at appointments with various specialists. From each appointment, I’d carried my daughter back home, carefully and at an ever-so-slight distance. I’m pained to admit now that I wasn’t sure how to love her. She was a hungry mouth that refused to latch, a small blister-covered body I was tasked with keeping alive. Some of my emotional distance was surely the shock of new motherhood, but not all. During late-night feedings, I searched images of children with her condition and stared at their misshapen teeth, whorled skin and bald patches. I cried in the pale light of my phone. In some deep, shameful recess I hadn’t known existed until then, I saw her condition as a defect. There was something wrong with her.
Her father, meanwhile, was head over heels in love. He took her for walks in the garden, played his guitar for her, put her in the carrier while he cooked. When his office sent everyone home in March 2020, then unceremoniously laid him off one month later, my husband and daughter became constant companions. They took long naps together, her small body splayed out on his chest, rising and falling with his breath. It was for him she first smiled, first cooed, first laughed. “I didn’t even know you could be best friends with a baby!” he joyfully exclaimed.
In the glow of his love, she slowly revealed herself to us—the exuberant smile, the language of babbles, the gleeful shriek at strangers and the tender way in which she reached for our faces. My husband’s elation infected me, showed me how to love her.
Privately I hoped that her symptoms wouldn’t be that bad. I was grateful for the isolation of the pandemic, that I didn’t have to see in person the typical, able-bodied babies who populated my social media. The videos of them clapping and sitting, the photos in which their smooth unblemished skin glowed, ignited a deep, ugly envy in me. I wanted to draw up the walls around my small family, stay in quarantine forever and protect my daughter from the world.
Protect or hide?
I couldn’t be sure.
*
Society as a whole reinforces the idea of disability as tragedy. However, published research has shown that with positive adaptive strategies, parents of children with disabilities are often happy with their lives and hopeful about their children’s future. Parents of children living with cystic fibrosis do not report any feelings of guilt or inadequacy as parents. People with Down syndrome report high levels of satisfaction with their lives, while their siblings overwhelmingly feel that they are better people for having had their brother or sister in their life. Contrary to the notion that a disabled sibling “takes away” from the non-disabled sibling’s development, adolescent brothers and sisters of children with physical disabilities score significantly higher in cognitive and affective empathy than their peers.
Even commonly-held beliefs around diminished quality of life grow flimsy when held up to the light. Reports often cite people with autism as experiencing lower quality of life, yet more recent research reveals lived experiences to be more varied, with worsened quality of life resulting from anxiety and depression rather than autism itself. Autistic researchers have presented alternative, neurodiverse perspectives that frame low quality of life around limited resources and access to societal participation, rather than inherent deficits. Discrimination, not disability, is what diminishes quality of life.
“The oppression,” disability scholar Marsha Saxton writes, “is what’s most disabling about disability.”
*
As the weeks went on, I began to notice delays in my daughter’s motor development. She howled mercilessly at tummy time, and by five months, had yet to roll over. She only reached for objects with her right hand, keeping her left locked in a tight fist, thumb tucked inside.
When I Googled these behaviours, I saw the words “cerebral palsy.” I felt a knowing, heavy as grief, settle over me. I hoped I was being dramatic, but her geneticist confirmed that hemiplegic muscle weakness can occur in people with her condition.
We were already in the process of starting physical and occupational therapy when the seizures started. They didn’t look like seizures—they looked like small jolts, similar to the startle reflex but with an exaggerated, dizzying eye roll. A trip to the ER and a twenty-four-hour EEG revealed that my daughter was having infantile spasms, a “catastrophic” form of seizure that disrupts brain development.
We were warned that the one-month course of high-dose steroid treatment would be intense, that she would spit up, be angry, not sleep, eat constantly and then not at all, that her body would swell and her face moon. We were also warned that the treatment might not even work—infantile spasms can be hard to control, with one in three children experiencing relapse.
I slid down the Google rabbit hole, a vortex of damning prognoses: over half of kids with infantile spasms have intellectual disabilities, and up to seventy percent go on to develop other seizure disorders. Please don’t let this be her, I thought.
During the month of treatment, the light went out in her eyes. She was lost somewhere inside herself, the medications dulling her, puffing her into a marshmallow version of herself. Her developmental assessments at the time showed delays in all domains. Below average. Far below average. Globally delayed. I asked her neurologist if this was a result of the medications or the seizures. He diplomatically replied that we couldn’t know yet, but it was possible that there was “cognitive decline.”
Cognitive decline. The phrase rattled inside me. I searched her eyes for a spark, tried to coax her lips into a smile, desperately practiced her hard-fought milestones to make sure there was no regression, no loss of skills. Please let her recover.
I did this for the first week of her treatment, tailspinning between Google, my daughter’s swollen face, and my own private prayer, which was more of a desperate plea for her to be close to the able-bodied daughter I’d envisioned than anything spiritual. As such, it brought me no peace, just a sinking, frantic sense of doom.
Then one day, holding her puffed-up body while she howled, something shifted in me. I realized I’d been saying the wrong prayer. It couldn’t be, Don’t let my child have differences, don’t let her have cerebral palsy, please stop her seizures, make her condition mild.
The prayer had to be, Help me to accept my daughter exactly as she is, in the body she is in.
I couldn’t wish one part of her away; I had to accept all of it, even the parts that were painful and terrifying to me. Especially those parts.
The earth inside me shook; the boulders began to move.
Help me to be the mother she needs, I asked.
And asked and asked.
*
“We have an appointment with a genetic counselor,” my friend told me. “To discuss options.”
My friend wanted answers, some kind of certainty or assurance about the fetus inside her, a clear course to take with the pregnancy. She didn’t have a lot of time. In the state where she lived, elective abortion was legal until the twenty-fourth week of pregnancy. She was at twenty-one weeks.
“It sounds crazy,” my friend said, “but I’m jealous of those moms where it’s super cut-and-dry, like the baby has a fatal heart defect and will die a few hours after birth. This is just like, ‘Your baby might have all these problems, or she might be totally fine.’”
“That must be hard,” I said vaguely, staring into the dishwater.
“I just don’t know if it’s a chance we can take,” she said.
She talked about her cousin who was autistic, about how much her aunt struggled to care for him and how isolated the family was. She talked about visiting a Facebook group for parents of children with the genetic condition, about how “bleak” the posts were. She talked about how hard managing the child’s care would be on her husband, the stay-at-home primary caregiver. Though she didn’t say it, I wondered if she thought of me, of all I’d gone through with my daughter.
“I just don’t think we could handle it. It’s already so hard with one kid, let alone another who has… stuff.”
*
She was right, of course. In a country where raising children is already difficult, so-called special needs parenting can be even more expensive and challenging.
The first year of my daughter’s life, I missed countless hours of work in my job as a teacher to take my daughter to therapies and appointments. While these hours and days away from work were protected under FMLA, the US’s federally-protected work leave for medical and family reasons, the time was unpaid. Although my daughter’s seizures resolved, she still required ongoing therapy, so the following school year, I went down to part-time and the next after that, took an indefinite leave of absence. While my family is privileged enough to be able to make ends meet on the one income of my husband’s new job, it hasn’t come without sacrifices. We live in my in-law’s basement; I’ve had to defer my student loan payments. Then there are the co-pays, the out-of-pocket and annual deductible, the unexpected $500 orthotic bill that came right at Christmas. The hours spent arguing with insurance companies, filling out paperwork, securing doctor authorizations, waiting on hold, pressing five to speak to an agent—navigating the maddening bureaucratic maze of half-funded public programs and for-profit health care providers.
I’m far from alone. Parents of children with disabilities have a harder time securing childcare and are three times more likely to experience job disruptions in order to provide care, leading to career sacrifices and lowered household income. The latter is particularly painful, considering the increased costs of raising a child with special needs in the United States. Caring for a child with intellectual disabilities can cost four times as much as a typical child, upwards of $2.3 million, while costs for a child with cerebral palsy are closer to $1 million. This is part of what people mean when they talk about the “burden” of having a child with special needs—which, to be clear, is a structural hardship created by a society that underinvests in all families. The burden is not the child with disability, but rather the society that doesn’t fully support them.
Constructed as they may be, these burdens have real and costly impacts. But if anyone is going to face them, who better than a college-educated, financially stable, two-parent household, equipped with comprehensive (albeit American) health care coverage and located in a major city, within driving distance of some of the best doctors and hospitals in the country? I am comfortable using medical terminology; I am conversant in laws that entitle my daughter to services; I have a reliable car to take my daughter to her appointments. As a white parent of a white-passing child, I don’t experience the medical or educational racism that families of colour do. Doctors believe me. Teachers and therapists and social workers assume the best.
Who better, in short, to be a special needs parent in America than me?
Who better than my friend?
*
I haltingly tried to say all of this on the phone to my friend. Yes, raising a child with a disability is difficult, but it’s less difficult for you or me than it would be for pretty much anyone else. Or, The doctors you talked to might have some ableist biases. Or, Who the fuck cares if your fetus goes to college?
But the words jumbled and failed me. Because I was trying to be a good friend, to listen, to be supportive. You haven’t been in her position, I told myself as I stared into the suds in the sink. Don’t try to convince her of anything, I thought. Just listen.
“I just don’t think it would be fair to our older daughter.” As though disability were a curse, a burden, a tragedy.
“I think your daughter is amazing.” As if disability were okay for other people, just not her child.
“If I could just know her condition would be mild, like your daughter's.” As if there were a hierarchy of disability, as if proximity to typical bodies and minds were a measure of how successful, joyful and worthy one’s life was.
“The hardest part is not knowing for sure if she’s going to be okay or not.” As if we could ever really know if our children are going to be okay; as if this one tweak on this one twisted strand of DNA could tell the whole story of who this child was going to be; as if I haven’t known a dozen heartbreaking, able-bodied geniuses who lived tragic lives and died untimely deaths.
“The hardest part is not knowing.” As if we could ever really know these people, these mysteries we bring into the world, under our care—our children.
I had a hundred responses but said none of them. I hmm-mmmed and bit my lip and didn’t stand up for my daughter or all that being her parent has taught me. Because I was trying to be a good friend. But perhaps in doing that, I wasn’t being an honest friend.
Perhaps I wasn’t being a good mother.
*
Prenatal genetic screening promises parents “peace of mind,” the opportunity to avoid the worst of chromosomal tragedy. At least that’s what the marketing tells us.
Backed by a powerful biotech industry with sophisticated advertising and lobbyists, the non-invasive prenatal screening (NIPS) market is currently valued at $3.8 billion and is growing rapidly. Yet the industry is largely unregulated. Despite being covered by most major US insurers as well as Medicaid, and being taken by up to a third of pregnant Americans, no NIPS tests have been FDA-approved. Their high false positive rate—up to 90 percent for some rare conditions—has led to an FDA warning, but no actionable restrictions or fines. While these tests merely screen for the potential for chromosomal abnormalities, invasive diagnostic tests, such as the amniocentesis my friend received, are more than 99 percent accurate. The rise in prevalence of both tests has outpaced the availability of genetic counsellors, especially those of diverse backgrounds, leading to an alarming shortage of people qualified and informed enough to help parents make sense of test results and determine next steps.
The “peace of mind” advertising language suggests parents take NIPS to gain an assurance of normalcy, a promise that they’ll get a perfect child, as though babies themselves were products. Disability scholar Marsha Saxton referred to this as a kind of human quality control. Bioethics professor Chris Kaposy points out its capitalistic, neoliberal focus on children as units of productivity and economic potential—the earning power that lies at the end of that race for achievement.
Limited data suggests that unequal access to NIPS may relegate chromosomal abnormalities to poorer families, effectively ghettoizing disability and exacerbating inequality. UN Special Rapporteur Catalina Devandas takes it a step further, warning that, left unchecked, the prenatal testing industry could give rise to a new eugenics movement. While the US maintains no national registry of fetal anomaly, one study found that abortions of fetuses with Down syndrome are highest in the West and Northeast, among mothers holding a college education—people who are statistically wealthier than other parents—which is to say, the people most likely to have access to prenatal testing, and also the people best positioned to raise a kid with a disability.
These are also the people most likely to vote Democratic and presumably hold progressive views. Similarly in Denmark, a wealthy country with nationalized health care, robust special education services, and outwardly progressive attitudes towards disability, the abortion rate for Down syndrome fetuses is close to 97 percent. Although each of these terminations represents a private, individual decision, gathered together they create a shape, the outline of a chasm between our professed values and our actual actions.
Perhaps we all have such a chasm inside. We support workers’ rights, yet order from Amazon; we fret about climate change, yet drive gas-powered cars and fly in planes; we profess to care about racial equity, yet send our children to segregated schools. Perhaps the privileged among us merely have the resources to most indulge these contradictions.
Yet if the most privileged people are the ones pursuing prenatal screening and subsequent selective abortion, perhaps it’s less about negating “burdens,” and more about ensuring a child who can achieve, go to an elite university, conform to societal markers of success.
Maybe it’s more about getting the baby you want.
*
When I was pregnant with my second child, I, like many parents of children with disabilities, opted not to do prenatal screening for my subsequent pregnancy. And while I was at it, I opted not to find out the sex.
Of course, family, friends, and even complete strangers would ask me “what I was having.” (“A human!” I’d cheerfully reply.) Again and again, I’d hear the same response, phrased so succinctly by the dental receptionist who warmly assured me, “Boy, girl, it doesn’t matter. As long as the baby is healthy.”
Though well-intended, the expression would ignite a fierce mama-bear defensiveness in me. “And what if the baby isn’t healthy?” I’d be tempted to ask. Was I supposed to leave the child at the hospital, as parents in previous generations did? Allow the doctors to withhold life-saving treatments, as was legal until 2020? Or murder the “defective” baby, as moral philosopher, Princeton professor, and ardent vegetarian Peter Singer argues is ethical?
This is not theoretical for me. These are real lives, real bodies I have carried inside my own. This is the daughter I’ve had to fight for, use all my privilege to advocate for, whose disability shook apart the bedrock inside me and built something new.
Now four years old, my daughter is considered a success story, the kind of kid who, when I post on various closed Facebook forums, gives other parents hope.
My daughter has been seizure-free for over three years. She walks independently, climbs stairs, feeds herself (often with her hands). She attends a typical preschool, is socially integrated, has lots of friends. At a passing glance, a casual observer might not know she has a disability. Other parents have said as much, brightly remarking that they “never would have known” she has cerebral palsy—as though passing as able-bodied were the goal, invisibility an achievement. It’s nearly the outcome I had hoped for, as close to those desperate first prayers as I could have gotten.
And yet, that’s not really the success. Sometimes I don’t think there’s even such a thing as “success” when it comes to my daughter, to anyone’s daughter—our children and the journey of parenting them. There is only acceptance and the unknown.
Given my daughter’s diagnoses and history, she has a likelihood of developing another seizure disorder. We won’t know until she is school-aged whether she has any of the learning disabilities associated with her genetic condition. She still attends multiple occupational and physical therapies each week. Though the blisters on her skin have long since crusted over, they’ve evolved into prominent patches and swirls of discolouration, which are at times relentlessly itchy, requiring special ointments and the ongoing use of a four-foot-tall blue light therapy panel.
Perhaps closest to my heart, my daughter is only just beginning to realize she has differences from her typical peers. Kids her age have begun to ask why her skin is “dirty,” or why she wears an orthotic foot brace, if she’s hurt. I see in these instances the way my daughter shrinks into herself, turns her head away, fumbles for language she doesn’t yet have—the way she sobbed at a picture book about bullying. I read all the parenting blogs, tell her all the validating and empowering platitudes, yet I think we both know, deep down, that it isn’t enough.
We’re not in the clear, is what I’m saying. There are no guarantees or protections from pain, is what I’m saying—not our children’s or ours. There are mysteries locked inside my daughter, inside all of our children—a shrouded future from which we can’t protect them, can hope only to guide them with some sort of grace or strength or love—a feeble flashlight, when you think about it.
I have found a way to live with that mystery, and to hold two truths—that my daughter is an ordinary little girl who has some extraordinary differences. She goes to therapy, dances with her dad, wears a leg brace, loves the beach, laughs uproariously at Peppa Pig, falls down a lot, doesn’t clean up her toys, hates getting her hair washed, has whorls of discolouration on her trunk and limbs, wakes up at 6 a.m. singing Frozen songs, tells poop jokes. She is a whole world, she has planets inside her, and disability is only one of them. Her differences are part of the normal, healthy genetic diversity of our species. There is nothing “wrong” with her. She is just her.
Being a parent makes us confront parts of ourselves we hadn’t known existed, and in my case, one of those parts was a deeply rooted, unconscious ableism. My daughter has given me the opportunity to bust apart that bedrock, to build something new, to understand the human condition in a different and expanded way. To love radically and fearlessly.
My friend was being offered the same opportunity.
“I don’t mean to sound like some crazy eugenicist,” she said.
Then give me another name for it.
*
Perhaps it’s not fair to throw my friend under the bus like this; perhaps it makes me a bad friend, or something even worse, to write this. It would be unrealistic to expect someone to unpack a lifetime of learned ableism in such a high-stress, time-sensitive situation. It’s taken me years to break down my old implicit beliefs as much as I have, and I still catch myself talking about how “good” my daughter is doing, as though less progress towards her goals would somehow mean she was doing “bad.”
I’ve never been in my friend’s shoes, never had the experience of finding out a fetus I was carrying had a genetic disorder. And perhaps that’s who I’m talking to in this essay, more than her—to the old person I was, to the part of myself that might have made the same decision, had I known.
A mother’s love is supposed to be unconditional. It’s supposed to be a lot of other things too—patient, devoted, single-minded. I don’t want to heap more on this moralistic pile of expectations. I do truly believe in a pregnant person’s bodily autonomy—in both defending the right to terminate a pregnancy, and respecting that decision whether we personally deem the reason to be “justified” or “unjustified.” Whether it breaks our heart or not.
I also believe we have a responsibility to interrogate the context in which that choice is made, to challenge the oppressive stereotypes and unexamined biases that motivate such a choice.
On the phone, I told my friend none of this. Because I didn’t have the words yet—because it took me months to pick it all apart, to examine each rock, to understand the new geography inside me and why her words filled it with such heavy sorrow.
She had the abortion a week later. I didn’t call or text after, though I did say my own private prayer for the fetus. I haven’t called her in the months since. I don’t know how to talk to her without talking about it, without facing my own reflection, the prejudiced beliefs she holds and that I used to as well, and the pain it took to bust them apart.
“I have to go,” is what I said instead on the phone that night.
“Hey,” she said, perhaps sensing my urgency. “I’m sorry if I’ve said anything to offend you.”
Of course she had.
Of course I couldn’t totally blame her.
Of course I could have been her.
