Choosing Motherhood With Disability
"I knew I could do whatever I wanted to do." The role of resilience in pregnant women and mothers with physical disabilities.
Linda Long-Bellil, Serah Nthenge, PhD, Lauren Smith, MPH, Joanne Nicholson, PhD and Monika Mitra, PhD
Summary: This article explores how women with physical disabilities experience pregnancy and motherhood, focusing on resilience as a key factor in successful parenting. Drawing from interviews with mothers across the United States, the article highlights self-efficacy, disability identity, problem-solving, support systems, and responses to stigma as important parts of how women navigate pregnancy, parenting, and societal assumptions.
Introduction
Increasing numbers of women with disabilities, including those with physical disabilities, are choosing to become mothers (Horner-Johnson, 2017; Iezzoni, et al., 2013). They embark upon motherhood despite societal attitudes discouraging them from doing so and knowing that they may experience challenges with some aspects of pregnancy and parenting (Smeltzer, 2007; et al., 2001; Farber, 2000). The question of how these women made the decision to become mothers and how they manage the role of parent has received little attention in the literature. To support the empowerment of women with disabilities who choose to become pregnant and have children it is helpful to identify factors or conditions that promote success in this role.
An important concept relevant to this discussion is resilience. Resilience has been defined in many ways (Denckla, et al., 2020). It has been defined as a characteristic primarily of the individual and also as one that is profoundly influenced by structural and systemic factors (Shaw, et al., 2018; Wright, et al. 2013; Hill, et Al., 2007, Yates, et al., 2003; Masten, 2001). It is frequently seen as the quality that makes it possible for some individuals to navigate particularly difficult or challenging circumstances and “meet the major expectations of a given society or culture” (Wright, et al., p. 229; Hill, et al., 2007). For the purposes of this article, resilience is defined as “as a set of qualities or processes that enable a person to make use of internal and external resources” (Hill, et al. 2007, p.9, Yates, et al., 2003).
Further insight into the qualities and processes that enable women with disabilities to manage pregnancy and parenting can be found in the work of Mitra and colleagues (2015) who outlined a perinatal care framework describing the individual and mediating factors that lead to maternal and infant outcomes experienced by women with physical disabilities in the context of the broader attitudinal, physical, social, and legal/policy environment. (See Figure 1.) In this framework, resilience would be considered a psychosocial factor that serves as a mediator between women’s individual characteristics and their maternal and birth outcomes.
Among the individual qualities that have generally been identified as characteristic of resilient individuals is self-efficacy, i.e., “the confidence in one’s ability to perform a specific task in a particular situation” (Gillespie, et al., 2007, p. 128). Among individuals with spinal cord injuries, self-efficacy has been identified as associated with resilience. (Kilic, 2013) Another aspect of resilience is coping appraisal and style which involves a person’s ability to “objectively evaluate a situation, so that adjustments can occur” and then behaving accordingly (Gillespie, et al., 2007).
A positive sense of self is also identified as a characteristic of resilience (Wright, 2013). And central to the sense of self is identity. Identity has been described as “the self as reflexively understood by the person in terms of her or his biography” (Giddens, 1991. p.53, Giddens, 2023; Shakespeare, 1996). How an individual perceives her disability in relation to her identity can influence her perspective on her role as a mother and either facilitate or detract from her performance of that role. Farber (2000) describes a type of identity relevant to resilience, namely, agentic identity, in which the individual sees herself as proactive in dealing with life circumstances or, in other words, as able to marshal internal and external resources. In contrast, when one has a victimic identity, one sees oneself as merely the victim of outside forces. A woman’s sense that she is or is not “like other mothers” and the impact of her feelings about her disability on that perception contribute to her identity as well (Farber, 2000).
An important aspect of a person’s sense of self and identity is the manner in which the individual conceptualizes their disability in relation to their identity. Research has suggested that the extent of acceptance of one’s own disability is associated with the degree that a person (a) develops a set of values that affirms rather than devalues them due to the characteristics of their disability; (b) deemphasizes those aspects of outward appearance or physical ability that are inconsistent with his or her disabling condition; (c) does not presume that the physical disability affects other aspects of functioning; and (d) emphasizes their own strengths and abilities rather than making comparisons with others with respect to their limitations (Moore, 1998; Wright, 1960; Dembo, et al., 1956))
This article will explore the perspectives of women with physical disabilities and the role of resilience in their decision to become mothers and their performance of that role. Data from in-depth interviews with mothers with physical disabilities allow us to explore and address the research question regarding factors hypothesized as mediators in the perinatal framework (Mitra, et al., 2015) Specifically, this paper focuses on psychosocial factors reflecting or related to resilience for mothers with physical disabilities that promote adaptation during the perinatal period.
Materials and Methods
Mothers with physical disabilities were interviewed in the context of a larger, exploratory mixed-methods study that aimed to systematically examine the health needs and barriers to care around the time of pregnancy for women with physical disabilities. In-depth interview data provided for the exploration of characteristics or factors related to mothers’ identity and capacity to access internal and external resources, and cope effectively with the challenges of motherhood.
Participants
Twenty-five women with physical disabilities from across the United States were interviewed for this study. To be eligible, women must have had a physical disability or health condition that affected their ability to walk or to use their arms or hands. Additionally, they must have delivered a child within the last 10 years and be age 55 or younger at the time of the interview.
Recruitment was conducted through a variety of methods including email lists and social media of disability-related organizations and local community-based organizations, and individuals’ social media postings. Ultimately, twenty-five women were able to be contacted and found to be eligible for the study.
Data Collection
Two researchers with lived experience of disability conducted semi-structured interviews, informed by the literature on pregnancy and parenting with a disability and a preliminary focus group with women with physical disabilities, in English over the phone at a time convenient to participants. The interviews lasted a maximum of two hours. The interview included questions regarding details of the woman’s disability or health condition, her attitudes towards pregnancy and disability, the attitudes of others towards her pregnancy, prenatal care, the childbirth experience, experience with physical accessibility, the first few months postpartum, and the woman’s recommendations to other women and to health care professionals.
Each participant was provided with a written informed consent document prior to the interview and was required to sign and return the document prior to the interview. Interviews were audio-recorded and transcribed by a professional transcription company. Participants were given a $50 gift card to a major retailer as compensation for their time. Study procedures were approved by the university’s Institutional Review Board.
Analysis
Complete transcripts were uploaded into Atlas.ti software to facilitate coding and analysis. We conducted content analyses of interview transcripts in an iterative, interpretive process (Lincoln & Guba, 1985) Codes were continuously revised and clarified using a constant comparative method, as themes and patterns emerged. This content analysis was intended to be descriptive, not to generate theory. The investigators reviewed transcripts and identified an initial set of themes, which evolved into a codebook as additional transcripts were reviewed. One primary coder coded all the interviews and met repeatedly with the research team throughout the coding process to discuss and clarify codes and develop a shared understanding. A process for assessing reliability and consistency of coding across data was established based on Kurasaki’s method and a subsample of transcripts was examined for reliability (Kurasaki, 2000).
Results
Participant Characteristics
The average age of the women at the time the youngest child was born was 32. Nearly half of the women had children between the ages of 5-10, while the others were equally distributed between younger age categories and two were also currently pregnant. Fourteen participants had only one child. Fifteen women had a planned pregnancy and ten were unplanned. Twenty had fathers present in the lives of their children and five fathers were not present. Seven women had a child with a disability.
The study participants reported a wide range of disabling conditions including dwarfism, muscular dystrophy, osteogenesis imperfecta (OI), spinal muscular atrophy (SMA), cerebral palsy, amputations, spinal cord injury, spina bifida, and multiple sclerosis. Eighteen of the women used some form of assistive technology to facilitate mobility and seven ambulated independently.
Themes
The interviews yielded data demonstrating characteristics of the participants that were consistent with the concept of resilience. We organize this data under the themes of internal and external resources.
Qualities
Many of the women exhibited a high degree of self-efficacy, obtained through practice with other challenges that they had encountered in life and had learned to manage in their own way. There were several comments that demonstrated an ability to realistically appraise a situation, taking into account their disabilities and the demands of the parenting task at hand. This, in combination with an agentic sense of identity, enabled the women to adapt their way of caring for their children. As one mother commented, “I’ve always had this ability, ever since I got sick, is if I couldn’t do it the way I used to (before becoming disabled), I need to figure out a new way to do it.” Similarly, another woman commented, “I have always come up with my own way to do things. And it’s going to be a little bit different than a normal person could do, but I’ve always been able to do it.” One woman described the “different” way that she calmed her daughter at night, saying,
“It was very hard for me to hear her cry and not be able to go and grab her. And all I had was really my voice. And so, we kind of accommodated to that where she did start to learn my voice and I would sing to her a lot. So, I started to kind of do other things to bond with her and to make her feel loved and care for her how I could.”
Another woman described how she learned to diaper her child using only her stronger arm.
“It took me a minute to figure how to do it one-handed . . . I had to sit there and say OK, . . . you just got to assist over here. It’s just a matter of getting the process in my head. You’re going to assist with this arm here, and this is how you’re going to do this. It took me probably the first two diapers just to figure it out.’”
Some women described how taking risks earlier in their lives enhanced their sense of self-efficacy and agentic identity. One mother with an orthopedic condition commented, “I rode a bike. I mean, I fell off that bike and broke bones, but I always got right back on it. . .. I knew I could do whatever I wanted to do, even if I would break a bone.” Another woman explained,
“We see fracturing as like something that you plan for but it's so likely. The odds are it will happen . . . and something that obviously it sucks, it's not pleasant, but it's not a reason not to do something.”
The reciprocal relationship between this willingness to take risks and self-acceptance was also demonstrated in the women’s willingness to have children who might have their same disabilities. For example, one woman stated, “And we had talked about possibility of adoption and things like that. But I just --I really wanted my own children. And so, we just kind of took the risk.” Another echoed similar sentiments and explained, “We just decided to just let things be and put it all in God’s hands.”
For many women, a positive sense of self as a person with a disability enhanced their willingness and ability to take on the parenting role. One woman commented that, “my life wasn't something I feel like I would have wanted to avoid, and I have led a happy life with my OI, not just in spite of my OI . . . I don’t believe in like overcoming OI. I just feel like that it's a part of me.” An agentic sense of identity in some instances reinforced their acceptance of their disabilities and the challenges of parenting that these posed. One woman whose leg had been amputated earlier in life commented that,
“One morning I realized that I put on a lot of weight. Like 120 pounds. And I realized that I was having one of those poor me moments. And I looked at my little boy . . . and I realized that I can’t do anything about him having a one-legged mom. But I can certainly control if he has a one-legged fat mom. And I started working out and that really helped me.”
Processes
Several women were also adept at the process of enlisting external resources such as family support when needed. One woman mentioned, “Hilary Clinton said, ‘It takes a village’ and I’m extremely grateful for the support I received.” Another noted that, “I think I built myself up with a good support system.” Having had a history of positive support from family seemed to lend itself to enlisting their support in a constructive manner. The woman who had described riding a bike and falling off just as anyone else would note that she took that risk, “because of the way my mom and dad were with me and raised me.” This sentiment was echoed by another woman who said, “I was thinking my disability was not a death sentence to me. I had a very normal upbringing. My parents encouraged me all the way . . . they didn’t let me use it really as an excuse for most things.”
On the other hand, when necessary, women were also resourceful at setting boundaries with people offering to help to give themselves the space they needed to figure things out on their own and adapt. One woman explained, “We had told our family that we welcomed visitors, but we didn't want anybody staying with us, which was mostly like my family from out of town, the first week. We wanted to figure out how to take care of her on our own the first week.” Another mother described a conflict she experienced with her in-laws when her twins were infants. Her in-laws were insistent that she must bathe the twins every day, which was difficult for her. Although she initially felt inadequate due to the difficulty she had in performing this task on a daily basis, as her children grew older, she ultimately rejected her family’s belief that this was important, saying, “Now I just kind of realize that I’ m doing the best I can. . .. I’m sure I’m making mistakes. . .. But as long as my kids say please and thank you and stay healthy and know right from wrong, then I think I’m OK!”
Important to the discussion of participants’ resilience is their responses to stigma and discrimination as expectant mothers with disabilities. A majority of participants (about two-thirds) reported experiencing some form of negative response to their pregnancy, desire to become pregnant, or to the possibility of them having a child with a disability. Sources of negative responses included participants’ own family, their partner’s family, healthcare providers, or strangers.
Some families’ negative reactions came from their fear of the participant having a child with the same disability. One participant, whose husband has the same disability as she does, described how a member of her husband’s family described the experience of growing up with him as a person with a disability. The participant recounted,
“[My husband’s] sister was talking about how it was so hard to watch him suffer and it's frustrating to hear that because you're the one who experienced it and if you don’t feel like you suffered then -- Yeah, you had painful moments and it was hard (but) . . . if you as the person who went through it are OK with it then it seems to me then you who watched it should be at least OK with it too... I mean I'm sorry if that was their experience and I kind of wish they would get help for their own, you know, their own challenge.”
The ability to set boundaries demonstrated by his participant reflected an appraisal and coping style consistent with resilience because it showed an ability to “objectively evaluate a situation” and resist taking on responsibility for or acquiescing to other people’s perspectives and emotions. Some women experienced negative reactions from providers. In some cases, providers used scare tactics to try and influence participants not to have a baby. One woman stated:
“The first couple preconception appointments I had, the OBs were very negative. They, of course, did not really understand [my disability], so they were coming in just seeing the disability, with some preconceived notions. I had one tell me that I would automatically deliver at 26 weeks and my child, if it lives, would be mentally and physically disabled.”
Participants who received ableist responses from their providers responded by finding more supportive and respectful providers who did not inappropriately jump to conclusions about the women’s decision to become a mother as in the instance of one participant who anticipated pressure from providers to terminate and therefore “lined up… a psychiatric social worker who I knew would support the decision to not terminate the pregnancy but to carry through the pregnancy” to support her during interactions with providers.
Some participants experienced negative reactions from strangers. While some responses were passive, such as stares or not acknowledging the pregnancy, others were overt. One participant said she heard people say things like “I’ll pray for you,” and another said someone told her, “How dare you.” Some participants said they saw people taking pictures of them or reaching into the stroller to see the baby without asking permission. Two participants reported feeling discriminated against, one by other moms in a play group and one by another mom in a babysitting group. Participants handled these reactions in various ways. One way participants responded was simply by ignoring the behavior, particularly with strangers. One participant said when, “…you’re disabled, the world feels like they own your belly… they can make comments about you,” but she stated, “I don’t say [anything back].” One woman described setting boundaries with strangers by saying “No” when asked to take a picture and removing herself from the situation.
Discussion
The interview participants demonstrated a strong sense of agentic identity, and this was a critical factor in their ability to be resilient, i.e., to marshal both the internal and external resources necessary to achieve their goal of effective parenting. This sense of agentic identity had developed over the course of these women’s lives as they learned to draw upon their internal and external resources to deal with various disability-related challenges. They took this experience of gathering their resources to meet the challenges of living with a disability and applied it to the tasks of parenting. The confidence in their own competence that evolved from their previous experiences in successfully navigating the hurdles imposed by their disabilities, rather than a focus on their limitations, empowered them to move forward successfully and meet their goal of being effective parents.
Some women identified the support of their own parents during childhood as an important factor in helping them to develop their ability to strategize and devise their own unique ways of performing parenting tasks. They described how their parents supported them in participating in the kinds of activities that children are typically expected to participate in and how this was beneficial in helping them develop the confidence needed to develop strategies needed to carry out the tasks of parenting – a role that is typically expected of most adults.
In some instances, the activities their parents permitted them to participate in involved some degree of risk, such as riding a bike. The ability to take the ordinary risks that one takes in a “normal upbringing,” as one woman put it, contributed to their sense of agentic identity and self-efficacy, which enhanced their willingness and ability to take on what some might perceive as the “risk” of the parenting role. It exemplifies the concept of the “dignity of risk” (Perske, 1972) which posits that “there can be healthy development in risk taking” (Shogren, 2006) and that people with disabilities must be able to take risks just as others do (Perske, 1972).
The interviews also demonstrated that many women had integrated disability into their identities in a way that reinforced their ability to take on the parenting role by deemphasizing those aspects of physical functioning that contradicted their disabling conditions. In several instances, they rejected social pressures to perform the tasks of parenting in the same manner as nondisabled parents perform them and instead embraced “the normality of doing things differently” (Hansen & Philo, 2007). Again, having previous life experiences in which they had gained practice in and learned to be comfortable with doing things differently than other people seemed to bolster these women’s ability to accomplish the tasks of parenting in a way that they found effective and satisfying.
Conclusions
These data provide important lessons for people with disabilities, along with parents, clinicians, and those involved in special education and rehabilitation. They underscore the point that resilience develops over a lifetime and can be fostered by ensuring that women with disabilities have opportunities to participate in typical life activities and that it is important that this include “(c)reating conditions where children can engage in risk-taking while parents can still feel secure in the safety of their children, (which) is an important component of supporting the development of psychological empowerment”.26,p346 Similar lessons apply for those who acquire disabilities in adulthood. Supporting individuals with disabilities in taking typical life risks and ensuring that they have opportunities to develop the skills necessary to manage everyday life provides can lead to the resilience necessary to manage pregnancy and parenting. Concomitant with this effort is supporting the development of a positive sense of self that encompasses a comfort with “doing things differently,” rather than feeling that one must perform tasks in the same way as nondisabled persons. Parents, school systems, clinicians and rehabilitation providers should collaborate to ensure that individuals with disabilities have these opportunities to develop these skills to support them in building a sense of self-efficacy and comfort with their own unique ways of marshaling their internal and external resources to fulfill their life goals, including pregnancy and parenting.20,24
About the Author
Linda Long-Bellil, PhD, JD, is an Assistant Professor at Commonwealth Medicine/University of Massachusetts Medical School. She conducts research and policy analysis on issues related to health care, including reproductive health care, and long-term services and supports as they pertain to people with disabilities. She also teaches in the Shriver Center’s Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program and educates current and future health professionals about providing quality care to people with disabilities.