The Disability Community Deserves Inclusive and Accessible Doula Care

On May 2, 1927, the Supreme Court decided that the state-sanctioned forced sterilization of people with disabilities in public institutions is constitutional. Ninety-seven years later, the horrific precedent set in Buck v. Bell remains the law of the land. Due to ableism, sexism, racism, and other mutually reinforcing systems of oppression, people with disabilities face innumerable barriers to sexual and reproductive health equity. These include refusals of care and other health care discrimination, Medicaid eligibility and service gaps, reproductive coercion, and accessibility barriers. In this blog post series, the National Health Law Program highlights current barriers and opportunities for change.

Doulas can improve the birth experience for people with disabilities. Doulas are birth workers who provide non-medical health education, advocacy, and physical, emotional, and social support for pregnant, postpartum, and post-pregnancy persons. Doulas provide this support during the prenatal period, labor and delivery, postpartum period, and during and after miscarriage, stillbirth, and abortion. Doulas’ advocacy role makes them uniquely positioned to help pregnant and birthing people who are experiencing health care access issues and health inequities. Community-based doulas provide culturally appropriate support to people in communities at risk of poor outcomes. Community-based doulas are often adept at supporting people with diverse identities and health care needs. Many doulas are also more likely to have experience with medical institutions that do not always attend to patients’ unique needs.. Further, community-based doulas often have similar lived experiences to their clients and can share first-hand knowledge and solidarity.

About 10% to 12% of women^[1] of childbearing age have a disability and are as likely to want a pregnancy as those without disabilities. People with disabilities have about the same rates of pregnancy compared to people without disabilities but are more likely to experience health inequities and have a greater risk of birth complications and death during pregnancy. There are also barriers that disabled pregnant people experience in their prenatal, birth, and postpartum care. The Centers for Disease Control outlines that a disabled person may experience a lack of physical access to health care equipment and facilities, negative attitudes, stereotypes, and misconceptions about people with disabilities, lack of provider knowledge on their disability, and inaccessible education material, among other barriers. One systematic literature review of studies focusing on the experiences of physically disabled women during childbirth found obstacles like provider inexperience, negative attitudes of medical staff, non-cooperation between health care settings of clinicians, inadequate equipment and facilities, and the absence of a birth plan.

To attend to this crisis, a growing group of doulas share information and experiences as disabled doulas and as doulas providing care for pregnant people with disabilities. Metropolitan Doulas, a doula collective, writes about exploring accessibility in the postpartum period, such as exploring options for seating when feeding an infant, tips for using pillows if a new parent lacks mobility in their upper body, and how postpartum doulas can support new parents with disabilities.

More research is needed to understand the outcomes of doula care for pregnant people with disabilities and their experiences with doula care. In the expanding body of research on doula care, it is important to note that research on community doula care should include community-based doulas throughout the process. The University of California, Berkeley’s S.H.A.R.E Program partnered with community doula leaders to create guidelines on ethical and equitable research on community doula care. This research is invaluable as doula care is further investigated as a powerful maternal health intervention.

Inequities in maternal health exist across intersectional identities. As with other communities who can benefit greatly from doula care but are less researched, like the Lesbian, Gay, Transgender, Queer or Questioning, Plus (LGBTQ+) community, it can be difficult to find disability-informed doula care. Many doula training programs do not specifically cover disability-inclusive care and to my knowledge, no large directories exist that allow a user to filter by disability-informed care. The doula workforce, training programs, and policies must take into account the wide spectrum that birthing people encompass.

Overall, more doulas are needed to support the births of all marginalized communities and more training programs should incorporate disability-informed care. Individuals from marginalized communities like the disability community should be encouraged and supported in becoming community-based doulas, as they know the needs of their communities best. As people with disabilities are more likely to have low incomes, Medicaid coverage for doula care is an important step in increasing access to doula care for everyone.

^[1] NHeLP strives to use gender inclusive language to accurately reflect the scope of people with various reproductive and sexual health care needs and related experiences. We employ “women” in limited instances when necessary to accurately reference legal terms or cisgender women-centered research and to honor how advocates or groups self-identify. More inclusive policy language and research is needed to better service the needs of all people who need equitable access to reproductive, sexual, and all health care.