“Are you sure you’re going to be able to do this?” a doctor asked Heather Watkins shortly after she gave birth to her daughter. Watkins, who has muscular dystrophy, had developed preeclampsia and had to be induced at 39 weeks—exhausted after 26 hours of labor, she didn’t give the remark much thought. Years later, a lightbulb went off in her head: some doctors don’t think disabled people ought to have kids.
Even among those who do, training is woefully deficient. Disabled people who become pregnant face a greater risk of complications—including far greater risks of death—at roughly equal rates across very different disabilities, a finding suggestive of underlying medical failures and biases.
Those biases, and that shortage of training, shape the care that health professionals and institutions provide to disabled pregnant people—which new medical training is slowly beginning to change.
“It doesn’t make sense to say, uniformly across all of these different disability types, that none of your bodies work,” National Institutes of Health staff scientist Jessica Gleason, who led a 2021 study that looked at adverse outcomes for disabled pregnant people, told me in December.
NIH researchers examined records of pregnant women with physical, sensory, and intellectual disabilities, finding that any recorded disability led to an approximately equally elevated chance of preeclampsia, hemorrhage, a C-section without clinical indications that it would be appropriate, and other dangers. The study also found that disabled pregnant people were twice as likely to experience severe preeclampsia and eleven times more likely than non-disabled people to die after giving birth.
The NIH study cites “a lack of education at every level of training to support pregnant women with disabilities” as a major problem that could underlie the disparity. That also suggests that those complications may be preventable, at least at the rates they now occur, if disabled pregnant people received better care.
Watkins, who later became involved with a Brandeis University study on disability and pregnancy care, believes that the primary driver is stress, which can exercise a variety of serious impacts on the body—including stress driven by an anticipation of ableist bias among health professionals. Research suggests that stress in pregnant people can lead to problems with endocrine and immune response, elevating preeclampsia risks; and for disabled Black women like Watkins, medical settings always entail the possibility of a triple whammy of racism, misogyny, and ableism.
Nichole Powell-Newman, who is also Black, said that a Boston-area maternal–fetal medicine specialist told her that she “shouldn’t have a baby, and [that she] was irresponsible” for bringing a child to term despite her disabilities. (Powell-Newman switched specialists and welcomed a child in late 2024.)
There are already a plethora of issues with “the way people perceive women of color and the way they are treated” in medicine, said Dr. Jo’Ann Jackson, an obstetrician-gynecologist who practices in the Washington, DC, area—and “then you incorporate some sort of physical difference that complicates the care or requires that provider to stretch…beyond their comfort level.”
Those failures of treatment are symptomatic of a system not made to support disabled pregnant people, and which therefore puts their lives at added risk. A survey of one thousand OB-GYNs—the results of which were published in a 2018 Health Equity journal article—found that fewer than one in five received any training about the health care needs of disabled people, and about the same proportion felt adequately prepared to manage the pregnancies of women with disabilities.
Staff at research hospitals, says Dr. Robert Fuller, a maternal and fetal medicine specialist in Charlottesville, Virginia, may generally have more training in how to treat pregnant patients with disabilities. Patients with more complex needs or risks, Fuller said, are more likely “to be ‘turned away’ or referred to a larger medical practice when seeking care in a smaller community or with a smaller obstetrics practice.”
Medical views around disability and pregnancy have been influenced by the history of eugenics, said Monika Mitra, the director of Brandeis University’s Lurie Institute for Disability Policy. “Historically, disabled people have been marginalized,” Mitra said, “and their rights have always been on the periphery.” Early in the 20th century, the eugenics movement—which, as a step toward a world without genetic undesirables, made it a priority to stop disabled people from reproducing—pushed through a variety of forced sterilization laws in the US. Some of those laws remain in place to this day for people under guardianship, and their legacy remains embedded within health care systems.
“The narrative has to change,” Mitra said, “so that disabled people have the right to be pregnant, and the right to have children—and the right not to have children.”
The Lurie Institute, which conducts research on the medical treatment of disabled pregnant people, is unusual in directly involving disabled people (including Heather Watkins) in that research. A 2016 study by the institute, for instance, found that women with hearing loss were more likely to have preterm births and children with low birth weight—which hearing loss on its own does little to explain.
“When you look at the statistics,” Gleason said, women with disabilities “get pregnant at the exact same percentage as people who don’t have disabilities, but they’re not getting offered the same reproductive care options.”
An OB-GYN’s first lessons about treating disabled patients often come on the job and on the fly, Mitra says. That was the case for Jackson, some of whose patients have come to her after leaving other OB-GYNs over a lack of disability competency. Jackson calls it crucial to treat disabled patients as experts in their own experiences: “They don’t need me to tell them what to do,” she said, “they just need me to figure out how to get them the care that they need”—offering, by way of example, providing exam rooms accessible to little people.
Clinicians, Mitra says, “have pointed to the need for training” and “appropriate, adequate, quality perinatal care to people with different disabilities”—illustrating that, for the most part, it’s not an issue of disabled patients vs. uninterested clinicians, but of a lack of comprehensive education.
But it’s not clear just how many medical schools provide training on disability and pregnancy, and those that do face another challenge: the offerings can still be broad relative to the challenges physicians encounter on the job. “Since disabilities are highly variable—intellectual, physical, communicative, et cetera,” said Fuller, who is also an associate professor in obstetrics and gynecology at the University of Virginia School of Medicine, “this training is not highly specialized to address the needs of individuals for specific forms of disability.”
In April, the American College of Obstetricians and Gynecologists released updated clinical guidance on how OB-GYNs can better treat disabled patients, both during routine care, like pap smears, and during pregnancy: speaking directly to a disabled person instead of a caregiver, ensuring that offices and medical equipment are accessible, including information about patients’ access needs in their charts.
Dr. Beth Cronin, the author of the new ACOG guidance and the associate director of Brown University’s OB-GYN residency program, believes that inaccessible offices may deter disabled pregnant patients. “If they don’t come for prenatal care, they’re not going to have a safe pregnancy,” she said.
Brandeis University’s Lurie Institute also received an active NIH grant, so far unaffected by sweeping cuts to the agency, to study improvements to disability training for current OB-GYNs, the first step in a plan for an online continuing education program.
Complications can, of course, happen regardless. While pregnant in August, Syanne Centeno-Bloom, a disabled Latina woman, experienced new, unfamiliar pains and felt something was terribly wrong. Having already had a miscarriage earlier in the year, Centeno-Bloom visited a local hospital in Maryland. She was mistrustful of the facility, where a provider had earlier written cannabis addiction into her chart after she acknowledged using cannabis to manage pain from endometriosis and Ehlers-Danlos syndrome. The first doctor to treat her at that hospital told Centeno-Bloom she was probably fine; another who she briefly saw raised the possibility of an ectopic pregnancy. Ultimately, she was given only Tylenol and told that her pain was the result of her previously diagnosed chronic illnesses. She was not, in Jackson’s terms, treated as an expert on her own body. “When my husband asked for the patient advocate, the nurse came in and said, ‘You’ve been discharged,” Centeno-Bloom told me.
A day later, Centeno-Bloom went to a second hospital—a Catholic one that had treated her well prior to her pregnancy. There, a OB-GYN acknowledged the possibility of an ectopic pregnancy but refused to recommend its removal. “She said she thought I could have multiples,” Bloom said, one of which “could be in the wrong place.”
A heterotopic pregnancy, which the clinician at the second hospital suggested Centeno-Bloom had, “is an extremely rare condition where there is a second embryo implanted normally within the uterus,” explained Jackson, the Washington-area OB-GYN. Even in such a case, she said, “Treating the ectopic [pregnancy] should still be the priority in order to save the patient’s life.”
Centeno-Bloom remained an inpatient for three days, and after requesting a different doctor—who disagreed with her colleague’s assessment—received the surgery she needed. There was never a second embryo. But one of her fallopian tubes had to be removed due to the delay in treatment, and in a meeting with the chair of that hospital’s obstetrics department, Centeno-Bloom said she received an apology. “I’m feeling it’s not enough,” Centeno-Bloom said. “What are they doing for education?”
Another Maryland woman I spoke with, Myisha Malone-King, was told in 2006 that her severe uterine pain was a consequence of her previously diagnosed Crohn’s disease. That didn’t line up with her understanding of the disease. But the possibility that she was pregnant, which she had been told her Crohn’s made impossible, was not on her mind.
After a week in hospital, a physician had the idea to examine Malone-King’s reproductive anatomy—finding not only that Malone-King was pregnant, but that she had an ovarian cyst. Damage from the cyst meant that Malone-King, like Centeno-Bloom, had to get one of her fallopian tubes removed, which not only ended her pregnancy but made future ones more challenging. “I felt as though no one was actually taking my needs and the things going on with me” into account, she told me. Fortunately, in her case, the odds were still in her favor: Malone-King is now a mother of two.
Those accounts did not surprise Kate Nicholson, the founder and executive director of the National Pain Advocacy Center, which in part advocates for better pain relief options. “There is such a normalization of women’s pain in general,” Nicholson said, “but also normalization around anything reproductive, where we’re told we’re supposed to have painful periods, pregnancy is supposed to be painful, [that] this is just all normal—when, in fact, it isn’t.”
Working from expectations shaped by non-disabled people, health care providers may also misjudge how much pain a disabled person is in: patients in chronic pain may not appear to be suffering as much as they are, and people who are neurodivergent may also express pain in different ways.
That was the case for Torri Blue, a poet who was based in Tennessee when she gave birth in 2020. Blue’s OB-GYN, whom she liked, was unavailable when she went into in labor, but other doctors still had her birthing plan—which included epidural anesthesia for pain control. Blue, who has since been diagnosed as autistic, essentially becomes mute when in pain.
“I think that that is often what’s expected of people in distress during labor, the ability to scream and be mean and be mad and demand, and I just couldn’t do it,” Blue said. “So I just laid there like a little cocoon.”
It wasn’t until Blue was dilated to nine centimeters—one centimeter away from when she would be pushing, after already experiencing extensive pain—that she received the epidural. Her providers “were not reading my distress at the level that I was experiencing it,” Blue said. Some research suggests that many autistic people are hypersensitive to pain, making the dismissal of their ectopic and delivery-related pain, respectively, even more consequential.
At the University of Michigan Medical School, students can take a two-week elective, launched in 2020, which places them with disability-focused physicians with accompanying coursework. Other electives on disability and medicine are offered by the University of California, San Francisco, the University of Illinois College of Medicine, and a handful of other medical schools that have made efforts to provide medical students with better training in disability. Most have sprung up in the last five years, offering a mix of fieldwork and classroom instruction; Michigan’s is run by Dr. Michael McKee, a family physician; as a medical student, McKee recalls, “I got more training in incredibly rare conditions that I have yet to see [in practice] than on patients with disabilities.”
McKee, who has hearing loss, is also part of the University of Michigan’s Deaf Health Clinic team. He tries to accommodate students’ specific interests: “We might have a doctor that is working mainly with patients with cerebral palsy, so it’s exciting to see medical students that want to learn more about that,” said McKee, “versus not engaging directly with these individuals.”
“Training in the clinical setting” around disability, says Fuller, of the University of Virginia, “exposes all medical students to individuals with disabilities”—which he sees as a valuable step. Mitra, of Brandeis University, expects broader changes to medical curricula to “take 15 years.” Even McKee’s training doesn’t focus on reproductive care specifically.
“What we try to do is get them to think about that, but engage patients in a cultural, humble way, so that becomes more patient-centered,” McKee said. That may better equip disabled parents like Watkins; as the disabled author Jessica Slice wrote in Unfit Parent, a book on disability and parenting, “for disabled people who have confronted internalized ableism…the failures or uncertainties during the first week can feel less dire.”
This story was published with the assistance of the Journalism & Women Symposium (JAWS) Health Journalism Fellowship, supported by the Commonwealth Fund.
