Many women with disabilities want to have children. Pregnancy often brings great joy but it also brings with it social, financial, and medical issues. There are some particular issues that are distinctive for women with disabilities. We, at Different and Able have created a series of pregnancy-related articles that we will be sharing over the next few weeks that will begin to identify some of the concerns and offer some recommendations for addressing them. We hope that the series will be helpful to you and that you will give us feedback in terms of whether this series was helpful and for you to recommend other issues that you would like us to write about.
Women with Disabilities – The Challenge of Becoming Pregnant
You’ve decided that you are ready to have a baby. You are excited and hopeful and looking forward to making your dream come true. You are imagining cute baby moments, decorating their room, and all the potential that the future holds. When you are living with a disability, sometimes challenges arise when you least expect them. 10 to 12% of women in the United States of childbearing age have a disability. (Signore et al 2021). While you may have been dreaming and planning to have a family, you may find that just getting pregnant is a challenge. You may need to find a medical specialist to help you, but you have the added challenge of finding one who is not only experienced with women who have a disability but who are also supportive of your dream. Unfortunately, everyone may not be as excited to support you as you might hope.
For women with disabilities (WWD), pregnancy can be an extraordinary journey. However, finding a healthcare provider who truly understands their unique needs remains a significant hurdle. Many physicians lack the training or experience to address the intersection of pregnancy and disability, often leading to miscommunication or inadequate care. Specialists who cater to pregnant women with disabilities are scarce. This scarcity forces many to travel long distances or compromise with less-than-ideal care providers. Even well-meaning doctors sometimes fail to grasp the complexities of having a disability. This can result in misconceptions, such as underestimating fertility or assuming higher pregnancy risks without proper evaluation. Additionally, language or accessibility barriers can impede effective communication between patients and providers, leaving critical concerns unaddressed. “…present-day WWD still perceive that their pregnancies are met with disapproval and biases from their care providers, experiencing what the American College of Obstetricians and Gynecologists describe as ‘insidious barriers to health care for women with disabilities…ignorance, social prejudice, and pervasive negative attitudes about life with disability’.” (Signore 2022).
Women should prioritize finding a healthcare provider with expertise in both maternal health and disability. “People with disabilities, especially women, face significant barriers to receiving proper reproductive health care.” (NCD study 2012). Recommendations from advocacy groups, social networks, and peer-reviewed directories can be invaluable. Organizations like the National Research Center for Parents with Disabilities offer directories and resources to help women connect with qualified providers. Support groups can also provide firsthand insights. Self-advocacy plays a crucial role. Women should feel empowered to ask questions about accessibility, experience, and approaches to handling disability-related needs during consultations. Your voice is key. Vocalizing your needs is vital in what may be a fight to get the care that you require. In reality, it can be hard to find your voice and speak up for yourself. Having an advocate to help speak for you is a valuable alternative. Find that person who has that vocal superpower to help you if you need it.
Many women with disabilities have successfully navigated pregnancy and childbirth with the right support. Stories of resilience and adaptability highlight the importance of advocating for one’s health. Look to success stories like Paralympian, Mallory Weggemann. She successfully navigated the challenges of pregnancy and gave birth to her daughter in 2023. (Our founder Alexandra Nicklas interviewed Mallory. Check out the interview here). Finding the right doctor may seem daunting, but it’s achievable with the right tools and persistence. Women with disabilities deserve to dream big and receive care that supports their journey into motherhood.
Resources:
Special thanks to Director Connie Lam
NYU Langone Orthopedic Hospital
Initiative for Women with Disabilities
Elly and Steve Hammerman Health & Wellness Center
Becker, H., Andrews, E., Walker, L. O., & Phillips, C. S. (2021). Health and well-being among women
with physical disabilities after childbirth: An exploratory study. Women's Health Issues, 31(2), 140-
147. https://doi.org/10.1016/j.whi.2020.10.007
National Council on Disability. (2019). Quality-Adjusted Life Years and the Devaluation of Life with
Disability: Part of the Bioethics and Disability Series. Washington, DC: National Council on
Disability. Retrieved from http://www.ncd.gov
National Council on Disability. (2012). Rocking the Cradle: Ensuring the Rights of Parents with
Disabilities and Their Children. Washington, DC: National Council on Disability. Retrieved from
http://www.ncd.gov
Powell, R. M., Mitra, M., Smeltzer, S. C., Long-Bellil, L. M., Smith, L. D., Rosenthal, E., & Iezzoni, L.
I. (2019). Adaptive parenting strategies used by mothers with physical disabilities caring for infants
and toddlers. Health & Social Care in the Community, 27(4), 889-898.
https://doi.org/10.1111/hsc.12706
Signore, C. (2022). Pregnancy in women with disabilities: Past, present and future. Paediatric and
Perinatal Epidemiology, 36(6), 769-770. https://doi.org/10.1111/ppe.12897 https://www.access-board.gov/mde/
New York Times: These Doctors Admit They Don’t Want Patients with Disabilities
https://www.nytimes.com/2022/10/19/health/doctors-patients-disabilities.html
The Doctor Won’t See You Now: Why Do Barriers to Healthcare for Women with Disabilities
Persists?
https://womensenews.org/2024/06/the-doctor-wont-see-you-now-part-two-why-do-barriers-to-
healthcare-for-women-with-disabilities-persist/
