October: Disability Awareness Month
Written by Uma Alagappan
POint of View:
‘Why am I having to explain this?’: Seven Stories of Barriers to Reproductive Care for Those with Disabilities – STAT News
Published in January 2023, this story centers the stories of seven women with disabilities: Stefanie (27), Leigh (34), Brianne (22), Sydney (24), April (44), CJ (42), and Linda (52) and their experiences of navigating maternal and reproductive healthcare including chronic illness, neurodivergence, and mental and physical health challenges. Their stories highlight the considerable emotional difficulty that comes with not only pregnancy and parenthood, but also with processing health risks and adverse outcomes. The article brings to light the systemic disregard of folks with disabilities as ‘nonsexual’ and ‘incapable parents’, resulting in the striking lack of support and resources shared in provider-patient interactions. This lack of support ranges from failing to provide patients with all of their reproductive care options to a gaping lack of emotional support through a strenuous time. Ultimately, by centering those who live with disability and chronic illness, the women share a myriad of ways in which people with disabilities and chronic illness know their own bodies and the detrimental impacts they experience when providers do not heed their expertise.
Resource 1:
Pregnancy and Motherhood in Women with Disabilities: Information and Opportunities for Local Health Departments
Increasing equitable access to reproductive healthcare for people with disabilities is important.
This brief guide is intended for healthcare providers to mitigate such disparities in reproductive healthcare experienced by women with disabilities– a task that becomes increasingly important as pregnancy rates rise in this population. The guide points to poor environmental accessibility, exclusion from informational resources, inadequate provider training, and social stigma as the primary barriers to quality care and makes the following three recommendations for healthcare improvement:
Improve accessibility and inclusivity of existing facilities, informational resources, and health promotion programming.
Provide staff training the needs of people with disabilities.
Collect data about pregnancy among women with disabilities in your city or county.
Resource 2:
Take Charge! A Reproductive Health Guide for Women with Disabilities
**create free account to access the document**
This guide was developed by The Empowered Fe Fes, a young women's advocacy and peer support group at Access Living in Chicago. Special focus is given to empowering women with disabilities to understand their reproductive rights, self-advocate for those rights, and make informed decisions about their own bodies. Topics include:
reproductive health, rights, and justice
keeping up with reproductive health
violence and abuse
mental health
mothering with a disability.
This guide can be used by people with disabilities, healthcare providers, parents, and community organizations.
News Story:
What It’s Like To Be Pregnant With a Disability
Scripps News follows Brittany King, a soon-to-be mother with disabilities, through the three trimesters of pregnancy. King acknowledges the stigma and ignorance around the sexuality of folks with disabilities with people asking her “Is [sex] a thing for people with disabilities?” Along with social stigma, King navigates severe health risks in her pregnancy. Though the challenges and potential complications arise in high risk pregnancy, typical for folks with disabilities, Dr. LaTasha Nelson, a maternal fetal physician at Northwestern Medical Group, reminds us of the excitement that pregnancy brings. King reaffirms this in sharing how happy she will be to bring the life that has been inside of her into the world. They remind us that we cannot lose sight of the typical nerves, and importantly joy, that comes with pregnancy, with disability or without. The story culminates with a photograph of King’s daughter. Her story highlights the public ignorance and social stigma that surround the sexuality of disabled folks as well as the emotional complexity of high risk pregnancies. Amidst the challenges that pregnancy brings, King centers hope, joy, and excitement. A related article is linked here.
Scientific Publication:
Perinatal Health Risks and Outcomes Among US Women with Self-Reported Disability, 2011-19
This study compared health risks and birth outcomes between pregnant people with disabilities and those without. A key contribution of this study is its use of a self-reported disability measure. With this metric, 19.5% of the study’s respondents have disabilities compared to disability rates based on medical diagnoses (~ 1-6.6%). Using National Survey of Family Growth data (2011–19), pregnant people with disabilities were found to have 24% higher risk of preterm birth and 29% higher risk of low birthweight as those without disabilities and were twice the liklihood of smoking during pregnancy (19% vs. 9%). The significance of modifiable risk factors such as smoking, obesity, and depression underscored the need for preconception care in this population. Since the proportion of pregnancies in which the birthing parent had a disability were substantially higher than in US studies using diagnosis codes to identify disability, it is important that providers collect self-reported disability data in health care settings to better assess patient needs and reduce disparities. It is also important to establish the timing of the onset of disabilities as occurring before the pregnancy in order to assess their potential for impacting birth outcomes.
To learn more about this work from the first author Willi Horner-Johnson, you can turn to the Health Affairs Briefing: Disability & Health Virtual Symposium. Horner-Johnson presents the findings of this paper in the “Disability & Health Video 3” at the 16:18 timestamp.
