It has been more than 20 years since clinical psychologist and polio survivor Rhoda Olkin issued an urgent call for more research on parents with disabilities: “It is as if families have children with disabilities and then these children disappear from the face of the earth,” she wrote in 1999.
We are now reiterating that call. With advances in medicine and changing policies and societal attitudes, more children with disabilities are reaching adulthood and having children of their own. In Canada, there are nearly 1 million parents with disabilities with one or more children living at home. More than half of those parents are women.
Women with disabilities are becoming pregnant at increasing rates. We recently found that in 2017, women with physical, sensory and intellectual/developmental disabilities accounted for 13 per cent of all pregnancies in Ontario, an increase from 8.5 per cent in 2003. Thus, in our conversations about Mother’s Day and in research and clinical practice in a year that has been made particularly difficult for pregnant and parenting women due to COVID-19, we must not overlook this growing maternal population.
Pregnant and parenting women with disabilities experience significant social and health disparities. Our recent review of the literature revealed that women with disabilities are at increased risk for complications in pregnancy and delivery such as gestational hypertension and cesarean delivery and their newborns have an elevated risk for preterm birth and low birth weight.
Over the past decade, several American health authorities, including the National Institutes of Health’s (NIH) Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), the American Psychological Association, and the American College of Obstetricians and Gynecologists, have initiated efforts to bolster research on disability and pregnancy and educate health care providers. Of note, since 2011, NICHD has funded several studies documenting barriers to care and high rates of adverse outcomes among women with disabilities in pregnancy, delivery and the postpartum period. In 2018, NIH announced it would support the collection of data from women with disabilities who give birth to supplement an existing national survey. As part of its 2020 strategic plan, NICHD identified women with disabilities as a priority population. To our knowledge, there are no equivalent initiatives in Canada.
If we don’t count (them), they won’t count
To better understand the perinatal health of women with disabilities in Canada, we need to build our evidence base. Surveys need to include disability and perinatal health variables. While there is some qualitative research on the pregnancy care experiences of women with disabilities in Canada, with the exception of a 1988 community-initiated survey and a 2006 Master’s thesis, we know of no national surveys that include both disability- and pregnancy-related items. The Public Health Agency of Canada’s now-dated Maternity Experiences Survey did not include measures of disability and the Canadian Survey on Disability does not include reproductive health. Statistics Canada’s newly formed Centre for Gender, Diversity and Inclusion Statistics may offer opportunities to better understand and address health disparities experienced by stigmatized populations like women with disabilities as well as the diversity of these populations. Indeed, as the DisAbled Women’s Network of Canada’s 2019 report More than a Footnote reminds us, women with disabilities are not just a large population (24% of women in Canada have a disability) but also a diverse population with factors such as race, socioeconomic status, and place of residence impacting their health.
The lack of disability-focused pregnancy research has real-life consequences that can perpetuate health disparities. Clinically, there is some good news. In 2017, Sunnybrook Health Sciences Centre in Toronto opened an accessible clinic to provide pregnancy care to women with physical disabilities and in Ottawa and Vancouver there are clinics that attend to the unique needs of women with disabilities. Disability-focused clinics and research institutes have existed in the U.S. for much longer, however. While it may not be feasible to have specialized clinics for women with disabilities in all communities, the lack of disability-specific pregnancy, delivery, and postpartum services and supports across Canada is worrisome. We are nowhere near being able to address the needs of women with disabilities clinically. Indeed, a recent study found that most obstetrics and gynaecology residents in Canada receive no formal training on women with physical disabilities. We must commit to training these and others who provide perinatal care about the unique needs of women with disabilities. In doing so, we must draw on the social model of disability and the lived experience of women with disabilities.
Nothing About Us Without Us
The COVID-19 pandemic has highlighted how people with disabilities are marginalized in health care and other settings as well as the necessity of social and other supports for pregnant and parenting women generally. As the world returns to a post-pandemic normal, we must commit to supporting the health of Canada’s growing population of pregnant and parenting women with disabilities. This includes research investment, education of health and social service providers, enhanced community supports and changes to clinical care and policy. Fundamental to this is the meaningful inclusion of women with disabilities in the direction of these activities.