By Clarissa Donnelly-DeRoven
In her regular life, Asheville resident Tiffany Grzankowski lives with a lot of pain. She has Ehlers-Danlos Syndrome, a cluster of genetic disorders that impacts connective tissue. For Grzankowski, in addition to chronic pain, EDS means her blood pressure and heart rate rise and fall without much warning, she breaks bones easily, and she feels nauseated often due to a paralyzed stomach.
All those symptoms worsened when she became pregnant.
“I was throwing up every day for the entire pregnancy,” she said. “If I stood up for too long, like, say I was grocery shopping or something, I’d have to use one of the scooters because I would faint.”
She asked her doctors for advice, but they didn’t have much.
“They were just like, oh, you know, drink some stuff with salt in it,” she said. “I was left to figure out everything on my own.”
It’s an experience “that’s unfortunately very common,” explained Willie Horner-Johnson, a professor of public health at Oregon Health and Science University who co-authored a recent study examining health disparities for pregnant people with disabilities.
Horner-Johnson and her team found that nearly 20 percent of all people who give birth in the U.S. identify as having a disability.
“It’s pretty consistent with the proportion of disability in the population,” she explained, but it’s a massive increase from previous estimates.
Earlier studies suggested that between just 1 and 6 percent of people who gave birth had a disability. Those numbers were gathered by analyzing medical claims data and diagnosis codes. But this new study analyzed responses from the National Survey of Family Growth, which thanks to a provision in the Affordable Care Act, now collects data on health disparities.
Horner-Johnson’s study also found that compared to their non-disabled peers, disabled people were more likely during their pregnancy to be younger than 20, un-partnered, without a college degree, and to have lower incomes. They also were more likely to smoke during pregnancy, experience delays starting prenatal care, have a preterm birth, and have children born with lower birth weights.
“The disparities that we’ve found were actually pretty consistent with prior research that was based on diagnosis codes,” Horner-Johnson said. “But now we know that those disparities are much more widespread than it appeared to be from those studies.
“It’s really clear that births to people with disabilities are not that rare,” she said.
A history of restricted reproductive rights
Those well-documented disparities, experts say, are tied to this country’s long legacy of eugenics practices, which often deprived disabled people of their reproductive rights.
“Reproductive rights of people with disabilities have not been a priority — I think that’s the most gentle way to say it,” Horner-Johnson said. “Generally, if people were thinking about parenting and people with disabilities at all, it was from a prevention point of view.”
Those narratives have led people with disabilities to be thought of as desexualized, incapable of parenting, “and so therefore unlikely to carry a pregnancy to term,” said Corye Dunn, the director of public policy at Disability Rights North Carolina.
That was certainly Grzankowski’s experience. She said during her second pregnancy, once she learned her daughter would be born with Down Syndrome, multiple doctors pressured her to have an abortion.
“They said that I had no business being a disabled, single woman having a disabled child,” she said. “And it wasn’t just one doctor, it was like two or three doctors.” She said doctors lectured her about how having a child with a disability would be a lot of work, and she shouldn’t assume that she’ll be able to give her child to her parents if things got too tough.
“I’m like, ‘would you be saying this stuff if I had no health issues? I don’t understand why me being disabled has anything to do with my ability to care for a child,’” she said. “I’m not against abortion at all, but it’s not in the cards for me. I’m having this baby, no matter what. And no one’s gonna stop me. And I remember the doctor said something like, basically, the decision I was making was a dumb decision.”
Lack of education
Because clinicians and other caregivers are just as likely to have the same biases about people with disabilities as the general public, the kind of reproductive education disabled people receive can be clouded and incomplete.
“We don’t do a great job of teaching our clinicians about the humanity of people with disabilities,” Dunn said, “So it’s not surprising that folks don’t get prenatal care until later if they have a cognitive disability. It’s not surprising that people with multiple disabling conditions engage in smoking or another contra-indicated activity — not because they’re bad people or don’t want to do well for their potential child, but because they don’t get the information.”
Also feeding into this is the reality that there’s very few requirements in medical school that teach clinicians how to give thoughtful and competent health care to people with disabilities.
“A lot of medical programs have none. Maybe there’s an hour-long presentation somewhere,” Horner-Johnson said. “It’s really piecemeal. There aren’t accreditation requirements. There’s no standard requirement that a certain amount of disability-related instruction be included. It’s just as somebody with an interest has the capacity to create something at one particular center. There are a few of those that are scattered around, but nothing systematic.”
Moreover, medicine has historically treated disability as a “negative health outcome,” not a demographic group, Horner-Johnson explained. Clinicians might feel more comfortable trying to “fix” the disability, rather than learning how somebody lives with, and around their condition and attending to their other medical needs.
A shifted burden
This leads many patients to feel as though their clinician isn’t actually the one with expertise. Rather, they feel that the pressure to explain their disability and how it’s impacting their pregnancy falls squarely on their shoulders.
“It shouldn’t be a patient’s responsibility,” Dunn said, “And yet, every single patient with a disability knows that if they don’t take some ownership of that they are at risk because providers don’t do it well enough.”
For Grzankowski, not having a supportive or knowledgeable medical team made her pregnancy — which was already an exhausting physical experience — into an emotionally stressful period as well.
“When I think about everything that we went through, I feel grateful that I knew what to do,” Grzankowski said. But, she added, not everyone can do that. “So, there needs to be a lot of changes across the board for pregnant women.”