An overlooked crisis: Women with disabilities and maternal health inequity

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By Tashi McQueen
AFRO Staff Writer
tmcqueen@afro.com

Black and disabled pregnant women face compounded challenges when bringing a child into the world. They navigate not only racial disparities in maternal care but also systemic barriers against those with disabilities. 

“Black mothers face disproportionately high rates of maternal death and complications, not because of personal choices but because of racism embedded in our health systems,” said Kavelle Christie, a health policy expert. “Their pain is often minimized. Their concerns are more likely to be dismissed. Even when they do everything ‘right,’ outcomes are worse.”

According to a large-scale analysis by the National Institutes of Health, women with physical, sensory or intellectual disabilities faced much higher rates of birthing complications compared to those without them. Women with disabilities faced 11 times the risk for maternal death, a 27 percent higher risk for hemorrhage and four times the risk for cardiovascular events such as a heart attack.

Black mothers faced a mortality rate of 50.3 deaths per 100,000 live births—more than three times the rate for White women, 14.5, and much higher than Hispanics, 12.4, and Asians, 10.7, according to data from the Centers for Disease Control and Prevention’s National Vital Statistics System in 2023.

Rachel Lovejoy, a disability advocate and community activist from Minnesota, shared her experience being pregnant while disabled, shedding a light on the unique struggles women in her position face, the gaps in care and support and how they push forward with resilience. 

Lovejoy shared that she suffers chronic migraines. Throughout a series of health episodes—including numbness, weakness and exhaustion following childbirth—she was repeatedly dismissed by doctors who prescribed antidepressants rather than investigating her symptoms.

“My first child was born in 2000 and immediately after, I lost sensation in my hands and was beyond tired,” said Lovejoy via the Disability Visibility Project. “I slumped and schlepped into parenthood with fingers that didn’t work. My hands didn’t feel heat. I burned my baby’s bottom. I freaked out, but my general practitioner and obstetrician said, ‘You’re just scared of your kid. Take some happy pills.’”

Lovejoy shared how she also felt isolated within her community and the places where she got her medical care because she was the mother of biracial children and a Black woman.

During her second birth, the anesthesiologist refused to give her an epidural saying she was “too fat” for it. She ended up hemorrhaging. 

“I spent 4.5 hours in pain, blacking out and being harassed by a night nurse who said my behavior was exaggerated,” she said. “I had to petition for medical care. My hands were more numb than before and then my feet followed suit. Even though my list of symptoms seemed to be mounting, I left the hospital to care for my newborn and 15-month-old.”

After a long battle of advocating for herself within the healthcare system, she was diagnosed with multiple sclerosis in 2004. She later learned she also had heart murmurs, leukemia, endometriosis and uterine fibroids—compounding her health struggles as both a patient and a mother.

Inspired by her experiences, Lovejoy became a disability advocate, working to amplify the voices of persons with disabilities.

Brooke Shapiro, chief mom officer at Sprinkles Parents, a solutions platform for families with kids under 5 years old, highlighted three critical challenges Black mothers often face when it comes to navigating the healthcare system during pregnancy: medical gaslighting, disparities in access to care and financial burdens.

“Many Black mothers report their pain and symptoms being dismissed. Every mother deserves to be heard,” said Shapiro. “Advocacy—whether self-advocacy or support from a doula or partner—is essential.”

Shapiro recognized that not all families have access to or can afford the newest, safest baby products or high-end care.

A study by Rebecca A. Gourevitch, of the University of Maryland School of Public Health, and colleagues found that Black women paid the highest out-of-pocket costs for pregnancy, delivery and postpartum care, averaging about $2,398. Hispanic women followed with $2,300, Asian women with $2,202, and White women with $2,036.

“That doesn’t mean they shouldn’t receive safe, quality resources,” said Shapiro. “Community donations and safety education are key.”

Christie shared a word of encouragement for Black mothers and their support network.

“These systems were not built with Black mothers in mind, so we have to show up with urgency and clarity,” said Christie.

But she didn’t put the weight of this change on mothers and their supporters, she put it on politicians.

“Black maternal health outcomes will not improve without policies that address racial bias in medical education, expand access to Black-led maternal care models and hold systems accountable,” said Christie. “This is not just about bedside behavior. It is about structural reform.”

States such as Maryland are taking some of those steps in their legislatures.

“Black maternal health, we work to ensure that our birthing hospitals are held accountable, that their outcomes for Black women are transparent, and that they must have specific follow-up with high-risk women,” said Maryland Del. Jheanelle Wilkins (D-Md.-20), chairwoman of the  Legislative Black Caucus of Maryland.

In recent years, the Maryland General Assembly has passed legislation requiring hospitals to adopt policies that allow at least one doula during birth, mandate transparency, ensure continued funding for maternal health programs, and require prenatal risk assessments along with postpartum referral forms within 24 to 48 hours of discharge.