Women and Disability: An Empowered Lady’s Perspective
By: Lacey Lyons, Intro by April Meredith
March is Women’s History Month. In honor of this celebration and International Women’s Day (March 8), we reached out to one of the participants of our Empowered Ladies* peer support group to share her thoughts on womanhood and disabilities. We thank Lacey Lyons, a freelance writer, and editor who teaches at Belmont University, for providing her research and insight into these intersecting identities. As Lacey points out, societal, structural, and attitudinal barriers are still quite prevalent today. She reminds us of how important the work of Centers for Independent Living such as Empower Tennessee is toward cultivating a barrier-free community where people with disabilities are valued equally and participate fully. Below is her perspective.
When given the prompt, “Write a blog for Women’s History Month about women and disability,” the first outline that springs to mind is the obvious one. It tells the stories of famous women with disabilities and the roles they played in history. It calls on us women with significant life-impacting conditions to summon the attitudes of these women as we live our daily lives. The idea for this blog is not necessarily a bad one. However, I was once given a piece of writing advice: Your first idea is never your best. Therefore, I decided to write a piece to which I could personally relate; an essay that outlines mental and physical health issues facing women with disabilities instead. These issues include the importance of peer support, which Empower Tennessee offers Middle Tennesseans like me through its Empowered Ladies group. I also address health issues specific to women and the ways in which they are affected by disability, including breast health and the process of deciding to become a biological mother, as well as the added weight that decision has for women with disabilities or medical conditions. At the end of this piece, questions will have been raised about where advocates, professionals, allies, and the women themselves should go from here.
Researchers at the University of Illinois and the University of Haifa found that, in terms of their involvement in their communities, “women and girls with disabilities are at a particular disadvantage even when compared to men with disabilities,” experiencing lower rates of employment and independent living. Many people experience their first jobs and independent living environments in young adulthood, a difficult time for young women with disabilities. Because of barriers to social acceptance, “they may have difficulty feeling that they belong both in the general community and in the community of all women.” This is where the benefits of peer support groups become evident as these groups broaden their scopes to include not just therapeutic information, but also social support. Because women with different types of disabilities are invited to meet together, the attention shifts from “shared impairment” to the “shared experience of living with a disability regardless of type.” The end results of this model are relationship building, improved self-confidence, and the ability to self-advocate. For some women in the study, their participation in peer support was the first time they had these experiences. “Through the group, women learned that it was not intrinsic qualities about themselves that fostered a negative self-concept, but rather the misguided perceptions of others around them. This led the women to realize that they had a place in the world like everyone else and to focus on fixing others’ perceptions rather than on fixing themselves.” This quote is the kind of abstract language that we seem to hear all the time. To see that it is backed up by academic research can be validating for those interested in self-advocacy and improved mental health in women with disabilities.
Research published in the journal Social Work in Public Health in 2016 found that women with disabilities also faced barriers to breast health screening services, including mammograms and clinical breast exams, due to a variety of factors, including inaccessible equipment and exam room tables, as well as the likelihood of increased age, limited insurance options, and difficulty accessing care. Ten women with various disability types participated in the study, which revealed that “while larger health facilities such as hospitals were more compliant with the Americans with Disabilities Act, these facilities still had issues…including blocked access routes…check-in counters that did not accommodate women using mobility devices, and inaccessible separate changing areas.” The women reported that community clinics were often less accessible than large hospitals. Despite the fact that all the women had health insurance, some were forced to visit inaccessible clinics because those were the ones that accepted their insurance. “Several participants stated that…accommodations like raised lettering at entrances to specific areas within a larger facility are generally not available.” A community resource that could fill the gaps is mobile mammography vans; however, these often lack mobility device lifts, according to the study. These are just a few of the issues faced by women with disabilities attempting to access breast care. The consensus of the researchers was that since women with disabilities and chronic conditions are not often specifically identified as an underserved population, the organizations that promote breast health often fail to tailor their promotional materials to these women. However, the article concludes by suggesting that breast health facilities partner with Centers for Independent Living, like Empower Tennessee, to reach this community.
Another aspect of women’s health that is under-researched is the desire of some women with disabilities and disorders to become biological mothers. Though many initial results for the search terms “women and disability” concern pregnancy and parenthood, most of these results surround the Buck v. Bell case and historical bias against these women becoming mothers, not contemporary issues. “Medical professionals may not have the expertise to work effectively with women with disabilities who are contemplating or experiencing pregnancy, and women with disabilities encounter negative attitudes from strangers, healthcare providers, and even their own families related to pregnancy.” Three researchers at The University of Kansas studied a mixed disability focus group of twenty-two women and found that the women felt misunderstood, both when they expressed the desire for children, and when they revealed they didn’t want children. The women cited factors like the importance of children to their priorities, feasibility, and costs as key to their decision-making processes. The opinions of their health care providers were important to all of the women surveyed. “As medical experts, their…recommendations carried great weight and it was difficult to view pregnancy or motherhood as feasible without their support. In addition to being a primary source of information…their role often included going beyond the facts to give recommendations that reflected their professional or personal biases.” It was all the more harmful when the women valued their doctors’ advice over their desires to be parents. All of the women in the study reported encountering negative attitudes related to potential parenthood from doctors at least once. However, some women chose not to have biological children out of fear of the side effects of their medications, the potential for possible birth defects, and concern for incapacity as the result of a difficult birth, among other factors. “While becoming pregnant was technically possible at some point for all of these women, it didn’t always feel possible; and even if it felt possible, some did not want to ‘pay the price it would take to get there,’ while others were willing to risk their own lives to do it.” In this way, the discussion of motherhood within the disability community mirrors the conversations of typical women. Some choose to be parents; some do not. Issues arise when the medical community does not reflect the attitudes and desires of its patients. When the medical model restricts itself to survival, rather than quality of life, patients don’t feel understood, and all of their communication with their doctors suffers.
I conclude with the question I ask my students to answer in writing classes: “So what?” Given the implications of this research, where can the disability community make improvements? Clearly, doctors can start by listening to the desires of their patients, medical manufacturing companies can explore making and marketing accessible equipment, and Centers for Independent Living can continue to connect us with resources and each other.
LaPierre, Tracey A., Zimmerman, Mary K., and Hall, Jean. “’Paying the price to get there’: Motherhood
and the dynamics of pregnancy deliberations among women with disabilities.” Disability and Health Journal 10 (2017): 419-425. Web. 22 Feb. 2019.
Mejias, Norma J. and Gill, Carol J. “Influence of a Support Group for Young Women With Disabilities on
Sense of Belonging.” Journal of Counseling Psychology 61.2 (2014): 208-220. Web. 22 Feb. 2019.
Saleeby, Patricia Welch and Hunter-Jones, Josalin. “Identifying Barriers and Facilitators to Breast Health
Services among Women with Disabilities.” Social Work in Public Health 31.4 (2016): 255-263. Web.
22 Feb. 2019,
*Empowered Ladies is an Empower Tennessee sponsored peer support group run by and for Mid TN women with disabilities who meet monthly on the 2nd Wednesday. Topics vary. All meetings are free. RSVP preferred. New participants welcome at any time. Contact Empower Tennessee at 615-292-5803 or firstname.lastname@example.org if interested.