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How Funders Can Increase Disabled Women’s and Birthing People’s Access to Reproductive Healthcare

by Sarah Katz
March 25, 2024

Imagine being repeatedly told to get a hysterectomy by multiple gynecologists for no medical reason. This has been the experience of Robyn Michelle Powell, a white disabled woman and wheelchair user with a condition called arthrogryposis. Powell, who lives in Norman, Oklahoma, is also one of the leading legal experts on the rights of parents with disabilities in the country, a faculty member at the University of Oklahoma College of Law, and a former social worker.

“I don’t know that at first I even recognized it as a problem,” Powell said. “It probably didn’t even really click as a problem until it happened multiple times. But the more it happens, the more frustrated I get, of course, and now I don’t tolerate it at all.”

Stigma is a Barrier to Reproductive Healthcare

In the United States, disabled women and birthing people face numerous ableist assumptions, violations, and barriers when accessing or attempting to access reproductive healthcare. According to a 2021 report by the National Women’s Law Center, 31 states and Washington, D.C. legally permit the forced sterilization of disabled people under some circumstances; two of these states, Iowa and Nevada, passed forced sterilization laws as recently as 2019. Disabled people are also less likely to receive comprehensive sexual education and access to contraceptives due to the widespread assumption that disabled people do not have sex, and are thus more likely to have unintended pregnancies. They may struggle to pay for abortions due to the fact that they are more likely to live in poverty than those without disabilities and because of the Hyde Amendment, which restricts Medicaid dollars from going to abortion services. They are also more likely to experience complications during pregnancy and delivery. A systematic literature review found women with physical disabilities experience numerous barriers to accessing maternity care. The list continues.

But Powell was quick to add that she experiences far fewer challenges accessing reproductive healthcare than those with multiple marginalized identities related to their gender, race, ethnicity, sexual orientation, economic status, education, and other factors. “It’s particularly worrying for me because I’m someone that has privilege and knows my rights.”

Research shows that racism, homophobia, transmisogyny, and other systems of oppression significantly compound the barriers and violations. Black patients are systematically undertreated for pain. Black and Indigenous women are between 2.5 and 3.3 times more likely to die from pregnancy-related causes than white women. Hispanic and Black women experience greater disparities in postpartum pain management than white women. Black disabled women are also more likely to be sterilized than white disabled women, and many transgender people must undergo sterilization to change their gender on their birth certificates and driver’s licenses. This is not an exhaustive list. For these reasons, Powell and other activists advocate that philanthropists support an intersectional approach to increasing the accessibility and inclusiveness of the reproductive healthcare system. 

Navigating the Dangers of Discrimination

Heather Watkins, disability rights advocate, poet, writer, consultant, and speaker in Boston, Massachusetts who serves on various boards that advocate for the reproductive and parental rights of people with disabilities, is also a leading activist in this space. Heather is a peer researcher in a study on pregnancy experiences and outcomes of Black people and Latinx/Latinas who have physical disabilities. She has experienced multiple barriers to reproductive healthcare as a Black woman with a congenital form of muscular dystrophy.

Racism, ableism, and sexism are interwoven in Watkins’ reproductive journey. In December 2005, Watkins experienced an ectopic pregnancy, which is when a fertilized egg grows outside of the uterus, threatening the parent’s life. In her case, as in more than 95% of cases, the embryo was in her fallopian tube. A tubal pregnancy can cause the tube to burst and the person to experience major internal bleeding. But as is common for Black women, her doctor did not immediately address her condition, and as a disabled woman, she was also less likely to receive routine preventative medical care.

“‘Okay, well, you’re definitely pregnant,’” Watkins recalled her doctor said after noting that nothing could be found on her abdominal or vaginal ultrasound, “‘but we’ll have you come back next week, and we’ll perform some more tests and see what’s going on.’”

This was a “big mistake” that led to her emergency surgery the following Monday. Her left fallopian tube soon burst and had to be removed, and she was in the intensive care unit for a few days afterward. Shortly after she returned home, Watkins developed an infection that required another hospital stay, followed by three months of rehabilitation with nurses coming to her home to pack the wound area. 

“To say that that was a harrowing experience would be an understatement,” Watkins said. 

Robin Wilson-Beattie, a Black disabled activist in Oakland, California who was recently named the 2024 Carrie Buck Distinguished Fellow by the Lurie Institute for Disability Policy at Brandeis University, which came with a $25,000 award funded by the Ford Foundation, said that such experiences are preventable through intersectional systems change that can be supported by philanthropy. (Carrie Buck was a disabled, low-income, white woman who was forcibly sterilized in 1927 under Virginia’s eugenics program while living at the Virginia State Colony for Epileptics and Feebleminded. That year, the U.S. Supreme Court endorsed her sterilization in its majority opinion in the Buck v. Bell case which was signed by Justice Louis Brandeis, after whom Brandeis University is named. As the Lurie Institute explains on its website, the fellowship is designed to “honor Carrie Buck’s memory and to take steps to rectify the injustice to which she and thousands of other people in the United States have been subjected.”)

What Can Philanthropy Do to Support Access to Reproductive Healthcare?

An important first step philanthropy can take toward shifting this paradigm is recognizing that people with disabilities need reproductive healthcare. Echoing this, Wilson-Beattie, who has multiple non-apparent disabilities and acquired a spinal cord injury in 2004 after surgery to remove an arteriovenous malformation when she was six weeks pregnant, explained: “You cannot separate disability from any causes because disability is just … [a] natural part of … the human condition.”

Wilson-Beattie said that the Carrie Buck program is an example of a philanthropic effort that can create systemic change, and can also attract candidates who may not be academics but are still qualified and committed to the cause. “To be honest, I learned about a world that I didn’t know existed because of the Carrie Buck Fellowship,” Wilson-Beattie said. “I thought that fellowships were only for people who were … academics and doing … research, or … grad students … I didn’t know those kinds of things were out there, and I consider myself quite knowledgeable.” 

Dana Huber, a white disabled woman who lives in New York City and is the Director of Programs and Strategic Learning at the New York Women’s Foundation, adds that philanthropic work requires collaboration between the disability justice and reproductive justice movements. “Being in a space together to talk about both the history of challenges that our movements have had in collaboration, but also to think of a pathway forward, particularly as there are so many attacks on individuals’ reproductive rights and freedoms” is key, she said. (In 2023, The New York Women’s Foundation released a report on the state of women and girls in New York that delves deeper into this subject.)

Some legal efforts are also underway that could improve disabled people’s access to reproductive healthcare, and philanthropy can support them by funding lobbying and advocacy. On March 18, President Joe Biden signed an executive order to increase funding for women’s health research, including for conditions such as endometriosis, rheumatoid arthritis, and chronic fatigue. In July 2023, Congresswomen Ayanna Pressley, Senator Patty Murray, Representative Cori Bush, and Senator Tammy Duckworth reintroduced the Reproductive Healthcare Accessibility Act, which would establish grants and programs that would provide “training for healthcare providers who offer sexual and reproductive health care to individuals with disabilities, and [education for] individuals with disabilities about sexual and reproductive healthcare.” (The bill has been read twice in the Senate and referred to the Committee on Health, Education, Labor, and Pensions; in the House, it has been referred to the Subcommittee on Health.)

What is the ultimate outcome that philanthropists should strive for in supporting the reproductive justice and disability justice movements? “Reproductive happiness,” said Wilson-Beattie—a term she “accidentally” invented during her Carrie Buck Distinguished Fellowship keynote at Brandeis on March 7. 

Reproductive happiness for all women and birthing people, including those with disabilities, looks like, as Wilson-Beattie shares, enjoying “the right to have a child, the right to not have a child, and the right to parent your child in a safe and healthy environment.”