Women with learning disabilities (LD) face persistent and deeply rooted health inequities, including poorer overall health and a shorter life expectancy than the wider population. For those who become mothers, these disparities are often intensified: both they and their babies are at greater risk of complications during pregnancy, childbirth, and the postpartum period. Recognizing these realities is not about defining women by risk, but about recognizing the urgent need for compassionate, inclusive, and well-coordinated care that supports their health, dignity, and right to thrive.
Modern maternity care often falls short in providing the steady, attentive support that birthing women need and deserve.
Doula services provide expectant mothers and their families with compassionate, continuous support, comfort, and advocacy during one of life’s most vulnerable and transformative periods. For many women in marginalized communities, however, access to clear information about these services remains limited. This lack of awareness and availability can result in the absence of supports that have the potential to meaningfully influence birthing experiences, sense of safety, and overall well-being. Expanding access to information about doula care is therefore not only a matter of service provision, but an essential step toward more equitable, respectful, and person-centered maternity care.
They have often reported lower satisfaction with their maternity care than non-disabled women, with particular concerns centered on the interpersonal dimensions of care, especially the quality of their interactions with healthcare staff. Existing research, though limited, consistently highlights experiences of unmet needs, including access to clear and understandable pregnancy information, continuity in caregiving relationships, and meaningful opportunities to participate in and maintain control over decisions affecting their care. These findings highlight the importance of maternity services that are not only clinically competent but also relationally responsive, respectful, and empowering.
Education and Emotional Support
Doulas provide accessible, culturally attuned information about pregnancy, birth, and postpartum health, including risk factors and warning signs. They also offer emotional support during periods that may be characterized by fear, uncertainty, or previous traumatic experiences. During labor and birth, they help ensure that a woman’s preferences remain visible and respected within the clinical decision-making process.
Affirmation and Advocacy
For women experiencing ambiguous or concerning symptoms, particularly those whose concerns have historically been minimized or dismissed, doulas offer validation, helping ensure that these concerns are addressed by clinicians. Advocacy is especially vital for populations who experience persistent disparities in maternity care, including inequitable treatment, dismissal of pain, and limited autonomy in care planning.
Navigation
Doulas help families navigate the complexity of both the health care and social service systems. This form of support is particularly important for individuals managing chronic conditions, those engaging with the health care system for the first time, or those who must overcome structural barriers such as transportation challenges, limited insurance coverage, or a lack of familiarity with available services.
Women with learning and intellectual disabilities are often faced with strong social and professional disapproval when they disclose their pregnancy, and are more likely than other mothers to have their children removed and permanently placed outside the family home due to child protection or welfare concerns.
Community Doula Support has made a significant impact on the birthing experience. During the prenatal period, mothers with intellectual disabilities consistently described their doula as a helpful, reliable source of information about pregnancy and birth. Many women reported that doula support felt like a vital means of preserving their role as the child’s primary caregiver. In the postnatal period participants described a trusting, emotionally attuned relationship with their doula that helped them weigh options and make informed care decisions. Doulas, in turn, emphasized that they adjusted their practices using individualized, flexible, and respectful approaches to meet the specific needs of mothers with intellectual and developmental disabilities.
Women of color continue to bear an unequal and deeply painful burden within maternal health care. Far too often, they face higher risks of poor outcomes, traumatic birth experiences, excessive medical interventions, and preventable maternal mortality. These realities are compounded by a health care system that can feel overwhelming and difficult to navigate, particularly for those whose voices and advocacy have been historically suppressed. For women who also experience disability, the intersection of race and disability further restricts access to compassionate, responsive support, intensifying inequities at moments when care, dignity, and understanding are most needed.
Triple Jeopardy
The Initiative on Triple Jeopardy: African American Women with Disabilities by Stokes and Scott, the intersecting realities of race and disability often referred to as “double jeopardy” are further compounded by gender, resulting in a “triple jeopardy” that intensifies vulnerability and marginalization within healthcare systems. Participants in the Triple Jeopardy initiative emphasized the importance of intentionally developing and connecting women with disabilities to community-based support groups that reflect their lived experiences. They also highlighted the critical need for culturally responsive and disability-informed training for service providers. Central to these recommendations is the ethical and compassionate imperative for providers to listen attentively to African American women with disabilities, honoring their voices, concerns, and expertise about their own bodies and experiences.
Every person deserves to experience pregnancy and childbirth in an environment that is safe, affirming, and grounded in dignity and respect. For many individuals who face discrimination within medical settings, doulas offer a deeply compassionate form of harm reduction, providing steady advocacy, emotional reassurance, and informed support when it is needed most. Their presence has been shown to reduce the risk of mistreatment during labor and birth, while helping birthing people maintain agency over their bodies and their choices.
For LGBTQ+ women and birthing people, doulas can play a particularly vital role in ensuring that identities, relationships, and needs are honored in the labor and delivery room. As with community-based doula models that have long supported Black, Brown, and Indigenous women, having access to doulas who share lived experience can foster trust, understanding, and a sense of safety. When LGBTQ+ birthing people are supported by doulas who also identify as LGBTQ+, they are more likely to feel seen, respected, and genuinely understood—strengthening the partnership between families and their care teams and contributing to more humane and affirming birth experiences.
Despite growing attention to disability-inclusive maternity care, gaps in the evidence persist across all categories of impairment. These gaps reflect a long-standing underrepresentation of pregnant and postpartum individuals with disabilities in research. Continued, thoughtful inquiry is therefore essential to identify interventions that are not only effective, but also respectful, accessible, and responsive to the lived experiences of disabled patients. Advancing this evidence base is a crucial step toward ensuring that maternity care systems can provide equitable, high-quality support that affirms the dignity, autonomy, and diverse needs of all birthing people.
The UNH Institute on Disability has developed a collaborative research initiative with colleagues from the Georgetown National Center for Cultural Competence and the Lurie Institute for Disability Policy at Brandeis University. Grounded in respect, inclusion, and lived experience, this project seeks to strengthen and humanize maternal care for women with intellectual and developmental disabilities (IDD) through the development of a compassionate, practical toolkit for doulas and healthcare providers—one designed to support dignity, understanding, and equitable care throughout the perinatal journey.
More research is needed to deepen our understanding of the outcomes of doula care at the intersection of race, gender, disability, and pregnancy, while centering the lived experiences of pregnant women and people with disabilities who receive this support. As the body of doula-related research continues to expand, it is especially important that studies of community-based doula care are carried out in genuine partnership with community doulas themselves—respecting and valuing their expertise, their trusted relationships, and the knowledge they hold through lived and professional experience.
About the Author: Jackie Pilgrim is a fellow with The Loreen Arbus Accessibility is Fundamental Programa fellowship created with Women’s eNews to train women with disabilities as professional journalists so that they can write, research and report on the most crucial issues impacting the disabilities community.
