Lesley A. Tarasoff
There is very little research concerning pregnancy, labour, birth and motherhood among women with physical disabilities and women with disabilities more broadly. While most women face a variety of social and emotional pressures to have children, research has found that women with disabilities have a very different experience, as they are often pressured not to have children. Many of these girls and women experience “training against motherhood” as soon as they are diagnosed as having a disability. Despite these pressures, there are many women with physical disabilities who are also mothers. Although in Canada it is difficult to determine just how many women with physical or mobility-limiting disabilities are mothers, data from the United States suggests that they are becoming mothers at similar rates to women without disabilities.
As part of a long-term project, a diverse group of women with physical or mobility-limiting disabilities in the Greater Toronto Area have been interviewed about their experiences during the perinatal period – pregnancy, labour, birth and early motherhood. Drawing on other research studies and preliminary findings from this project, this article looks at some of the unique experiences of women with physical disabilities during the perinatal period.
While most women face a variety of social and emotional pressures to have children, research has found that women with disabilities are often pressured not to have children.
There are many misconceptions about women with physical disabilities, including the idea that they cannot or should not become mothers. Women with physical disabilities are often on the receiving end of disability and reproductive “microaggressions.” Initially conceptualized with regard to racial and ethnic minority groups, microaggressions refer to “the brief and commonplace, daily verbal, behavioral, and environmental indignities, whether intentional or unintentional, that communicate hostile, derogatory, or negative … slights and insults on the target person or group.” Disability or ableist microaggressions include things such as exclusion, messages of undesirability, messages of burden, assumptions, pity and astonishment (e.g., the realization that a person with a disability is capable of achievements).
For women with disabilities who are pregnant or who are mothers, these ableist beliefs and patterns of behaviour are often compounded with what some call reproductive microaggressions. These can be direct, such as denying privacy by asking when a woman will have a baby, or indirect, such as expressions of gratitude for having a “healthy child.” Underlying many reproductive microaggressions is reproductive privilege (i.e., the traditional idea or ideal of which women should be mothers [read: white, middle-class, heterosexual, women without physical disabilities]), together with the idea that motherhood is the most exalted form of identity for women.
Jane, one of the research project participants – a married and employed mother of two with a spinal cord injury – shared her thoughts about her perinatal experience. While it was positive overall, largely thanks to her strong advocacy skills and a great team of health care providers, she still experienced a number of negative social interactions commonly experienced by women with physical disabilities in the perinatal period. Sometimes these interactions were overtly discriminatory and negative, such as when a stranger on the sidewalk told her she “shouldn’t be allowed to have children.” Other times, the microaggressions were less explicit. Like many women with physical disabilities, Jane found that many people didn’t see pregnancy as a possibility for her or recognize her as being pregnant as they might have with other women. She often encountered subtle reactions of surprise (astonishment) to her pregnancy and status as a mother while in public spaces such as waiting rooms. Sometimes the microaggressions she described took the form of differential treatment, such as the time she was asked in a grocery store whether she had her daughter “naturally” – noting that it’s unlikely a mother without a disability would have been asked the same question.
Research suggests that women with physical or mobility-limiting disabilities are becoming mothers at similar rates to women without disabilities.
Microaggressions at the intersection of disability and reproduction can also take the form of denying identity or personality by asking a mother without disabilities “Is that your baby?” or of desexualizing women with disabilities through comments such as “I can’t believe you have a baby.” These comments were occasionally directed at Jane, who said that many people she encountered assumed that she had adopted. Microaggressions sometimes take on a patronizing form, such as when people say they feel “inspired” by women with disabilities who decide to have children. Finally, microaggressions also include assumptions of helplessness and infantilizing remarks directed at these mothers, such as asking “Do you need help with your baby?”
Despite the assumption that spinal cord-injured women are able to give birth only via Caesarean section, research reveals that they can have vaginal births. “Everyone still thinks that I had a C-section,” says Jane, acknowledging this misconception.
Indeed, a growing body of research indicates that many women with physical disabilities experience fertility no differently than their counterparts without disabilities and they are capable of becoming pregnant and experiencing vaginal delivery. Though limited, there is some research concerning the pregnancy outcomes of women with physical disabilities. Some of this research suggests that expectant mothers who have physical disabilities may experience common symptoms of pregnancy more severely, and that pregnancy can temporarily or permanently “alter the course” of the disability.
Perinatal outcomes among women with physical disabilities vary depending on the type and severity of their disability. “As much as I want to say that my pregnancy was the same as everyone else’s,” Jane says, “I do admit that there probably were higher risks of complications with mine to a certain degree.” For instance, she noted that her mobility worsened during the course of her pregnancy – a change that she says wasn’t fully recognized by care providers. Indeed, studies reveal that health care providers generally do not know a great deal about the interaction of pregnancy and disability. Jane cited an example of her nurses not knowing a lot about the different catheter options.
Likewise, many of the women with physical disabilities who were interviewed, including Jane, reported feeling frustrated with the lack of perinatal information available to them and often experienced feelings of isolation because it was difficult to find others to share their experiences with. “I found it very frustrating that there is so little research. So any question I had, nobody could give me an answer,” she says. “It was always like, ‘We don’t really know. We’re not really sure.’” In addition to informational barriers, many women with physical disabilities report encountering inaccessible care settings. Jane cited examples such as places with bathrooms or showers she couldn’t access or fit her wheelchair into.
Disabled or not, at one time or another, everybody needs assistance, and it is rare that someone really, truly raises a child single-handedly.
Exploring how women with physical disabilities experience the perinatal period will provoke an interrogation of the self, of what is “normal” and what accessibility is, as well as what independence looks like. Parents with disabilities, like all parents, are creative and adaptable. In many cases, formal resources and supports are not available or accessible, and so some parents with disabilities may rely on unconventional resources and other supports to fulfill their roles effectively. At one time or another, everybody needs assistance whether they have a disability or not, and it is rare that someone really, truly raises a child single-handedly.
Moreover, for some mothers with physical disabilities, becoming a parent takes focus away from their disability and places it on other aspects of their lives, such as the new bond between parent and child as well as the child’s imagination and creativity. As Jane puts it, “Becoming a mom is probably the best thing that I did because it totally lessened … my focus or other people’s focus on my disability. My parents ask way less about my own health; they ask more about the kids.”
In particular, Jane talked about how her physical inability to do certain activities with her young son has led to opportunities to bond and play with him in other ways:
“[My son] knows that I do all the creative stuff with him, so I do all the artwork… he kind of sees us [my husband and me] as having those different [roles] … I love doing imaginative things and I think that’s important for his growing and learning … so for me what’s really boosted my confidence in parenting is that I have that ability or that gift to do that with him and the daycare has commented that he’s such a really imaginative kid…”
A number of other mothers who were interviewed shared similar stories about their relationships with their children and talked about how becoming a mother enhanced their confidence.
Many of the mothers also worried about how their children might be treated in school when other children found out that their mother has a disability: “Kids can be mean… I don’t want people to make fun of him because of me.” One mother with a congenital condition that often limits her mobility, as well as causes hearing and vision problems, arthritis and chronic pain, noted, however, that she uses her disability as a learning opportunity for her young son: “I don’t want him to make fun of anybody. I am trying to tell him that everyone is different.”
The experiences of women with physical disabilities during the perinatal period, including their parenting experiences, provide learning opportunities for all families and their children. This ongoing research project will help to develop resources for women with physical disabilities and health care providers and shed light on some of the positive experiences that they have during the perinatal period. Listening to and documenting the stories and experiences of women like Jane will be integral to this process of providing support.
Lesley A. Tarasoff is a Ph.D. candidate in Public Health at the University of Toronto. She conducts research in the area of women’s sexual and reproductive health, with a focus on women with physical disabilities and sexual minority women. For more information about her research, visit www.latarasoff.com.
Lesley A. Tarasoff, “We Don’t Know. We’ve Never had Anybody Like You Before”: Barriers to Perinatal care for Women with Physical Disabilities,” Disability and Health Journal 10:3 (July 2017). Link: http://bit.ly/2fmk65C.
Lori E. Ross, Lesley A. Tarasoff, Abbie E. Goldberg and Corey E. Flanders, “Pregnant Plurisexual Women’s Sexual and Relationship Histories Across the Life Span: A Qualitative Study,” Journal of Bisexuality (August 11, 2017). Link: http://bit.ly/2wfhZaN.
Lesley A. Tarasoff, “Experiences of Women with Physical Disabilities during the Perinatal Period: A Review of the Literature and Recommendations to Improve Care,” Health Care for Women International 36:1 (July 2013). Link: http://bit.ly/2hqbiQE.
Update: In September 2017, a community report was published based on this research into the experiences of women with physical disabilities. “Becoming Mothers: Experiences of Mothers with Physical Disabilities in Ontario” is now available to download on Lesley’s website.
Judith Rogers, The Disabled Woman’s Guide to Pregnancy and Birth (New York: Demos Medical Publishing, 2006).
Corbett Joan O’Toole, “Sex, Disability and Motherhood: Access to Sexuality for Disabled Mothers,” Disability Studies Quarterly 22:4 (2002).
Lisa I. Iezzoni, Jun Yu, Amy J. Wint, Suzanne C. Smeltzer and Jeffrey L. Ecker, “Prevalence of Current Pregnancy Among US Women with and without Chronic Physical Disabilities,” Medical Care, 51:6 (June 2013).
Alette Coble-Temple, Ayoka Bell and Kayoko Yokoyama, The Experience of Microaggressions on Women with Disabilities: From Research to Practice and Reproductive Microaggressions and Women with Physical Limitations. Presentations at the American Psychological Association Annual Convention (August 2014).
Derald Wing Sue, Jennifer Bucceri, Annie I. Lin, Kevin L. Nadal and Gina C. Torino, “Racial Microaggressions and the Asian American Experience,” Cultural Diversity and Ethnic Minority Psychology, 13:1 (2007).
Ayoka K. Bell, Nothing About Us Without Us: A Qualitative Investigation of the Experiences of Being a Target of Ableist Microaggressions (2013 doctoral dissertation), retrieved from ProQuest Dissertations and Theses (dissertation/thesis number 3620204).
Heather Kuttai, Maternity Rolls: Pregnancy, Childbirth and Disability (Fernwood Publishing, 2010).
Caroline Signore, Catherine Y. Spong, Danuta Krotoski, Nancy L. Shinowara and Sean Blackwell, “Pregnancy in Women with Physical Disabilities,” Obstetrics & Gynecology, 117:4 (2011).
Suzanne C. Smeltzer and Nancy C. Sharts-Hopko, A Provider’s Guide for the Care of Women with Physical Disabilities and Chronic Health Conditions (2005).
Published on December 3, 2015
Updated on September 25, 2017