Abstract
Feminist researchers focus on work–family conflict and the impact on maternal employment. They find jobs are not structured to allow for work–family fit. Using qualitative data, I examine those unusual circumstances in which work does work in the challenging case of mothers of children with disabilities. Their experiences make clear the problem for all caregivers when employment is based on a male model, and the importance of workplace norms that diminish work–family conflict. I find that with flexibility, paid leave, job security, and health insurance, that is, with jobs that policy analysts refer to as “good jobs,” and Randy Albelda calls “mother-ready” jobs, caregivers can manage work and family. I argue that through a combination of mandatory workplace restructuring and social supports, the state could facilitate the reorganization of jobs so that they are mother-ready and therefore make possible the performance of daily required tasks as care givers and employees.
Keywords
Introduction
At the center of feminist discussions of gender and work is concern about conflict between work and family. Work–family conflict is due, in the main, to the organization of workplaces around masculine norms (Williams, 2010) and notions that ideal workers are unencumbered by obligations to home and family (Acker, 1990). This old-fashioned worker-norm is slow to transform and the masculine gendered organization of workplaces remains typical. Workers are expected to rely on others (historically, unpaid wives or paid service providers) to do the care work. Yet, as Joan Williams (2010) argues, gender equality will require changing these masculine norms so that women and men can pursue careers, or at least decent-paying jobs, while also managing the obligations of family life. The conflict between work and family is not necessary, but rather a product of the gendered way we organize both the workplace and care work. Using qualitative data from interviews with families of children with disabilities, I argue that even in these more extreme circumstances it is possible to reorganize workplaces so that work and family are no longer in conflict.
The male model of workplace organization is a problem for all caregivers. Finding affordable, high-quality child care is nearly impossible (Chaudry, 2004; Presser, 2003; Zigler, Marsland, & Lord, 2009). Children and parents get sick and workers must be able to take time off, yet many (especially low-wage workers) do not have paid leave and cannot take unpaid time off, leave work, or shift their schedules for an urgent family problem without risking their jobs (Collins & Mayer, 2010; Heymann, 2000; Morgen, Acker, & Weigt, 2010). Furthermore, with care work still profoundly gendered labor (Cancian & Oliker, 2000; Coltrane, 1998), the burden of managing the competing demands of wage work and care work falls disproportionately on the shoulders of women. The imbalance of wage work and care work is especially precarious in families caring for children with disabilities. In these families, care can be more demanding and stressful than it is for children who are developing typically (Blum, 2007; Litt, 2004; Parish & Cloud, 2006), and alternative care can be unavailable or too costly (Rosenzweig, Brennan, Huffstutter, & Bradley, 2008).
In this context of a highly inflexible labor market, a privatized system for the provision of care, more extreme care demands, and an overwhelming cultural practice of maternal care, caring for a child with disabilities has negative effects on maternal employment (Home, 2004; Lewis, Kagan, & Heaton, 2000; Porterfield, 2002), which I describe further below. The literature on parenting a child with disabilities examines these negative effects on maternal employment and the differences across class, single- and two-parent families, and disability type. However, few scholars have shifted that lens to consider when and how work works, even in extreme circumstances of caring for a child with special health care needs (SHCN). Here, after analyzing interviews with 40 families of children with disabilities, I look beyond job loss and reduction of hours to examine qualitatively mothers’ experiences in rare workplaces where norms and practices diminish work–family conflict. Although my interviews concurred that the negative consequences for employment were profoundly gendered, affecting primarily the mothers in my sample (Scott 2007 and 2010), I also found stories that pointed to the work conditions that make it possible to better balance work and care.
I consider the employment experiences of families of children with disabilities for two reasons. One, they constitute a significant minority of families in the United States. Estimates vary based on different measures and definitions of disability; however, according to 2009-2010 National Survey of Children with Special Health Care Needs, 23% of households with children have one or more between the ages of 0 and 17 years with a disability and 15.1% of children younger than the age of 18 years living in the United States are estimated to have SHCN. Two, “extreme” cases make important, more generalizable points (Blair-Loy, 2001). Here, the more extreme case of parents of children with disabilities makes clear the imperative of jobs that allow for work–family fit for both men and women if we are to move to greater equality in caregiving in this society (Williams, 2010). If workplaces are not structured to allow for a balance of both wage work and care work, all employees will face the conundrum of this conflict, furthering the probability that the gendered status quo will persist.
Background
Employment for family caregivers of children with disabilities is challenging for a variety of reasons. Children with special needs often require more frequent medical or social service appointments; early intervention and special education programs; time-consuming routines for dressing, feeding, and minding; more frequent school appointments; sometimes hospital trips and stays for urgent care; and time-consuming management of alternative care when parents are employed (Hogan, 2012; London, Scott, & Hunter, 2002; Parish & Cloud, 2006; Rogers & Hogan, 2003). It is not uncommon for parents to develop additional expertise and perform intensive advocacy work to manage a child’s needs (Blum, 2007; Litt, 2004).
The additional costs of time and resources impose difficult trade-offs between providing care or working outside the home and coordinating formal care for children. However, finding alternative care is challenging: child care facilities are unwilling to accept children with disabilities, or they are unable to do so because they lack adequately trained staff. Alternative care is usually expensive and beyond the means of middle- and low-income families, even those with child care subsidies (Brandon, 2000; Brennan & Brannan, 2005; George, Vickers, Wilkes, & Barton, 2008; Rosenzweig et al., 2008).
As a result, primary caregivers struggle to find work that works—what Randy Albelda (2002) calls “mother-ready.” Such jobs are characterized by flexibility, paid sick leave (which can be used for dependents’ or employee’s illnesses), paid vacation days (which can be used to cover school vacation days or illnesses), access to unpaid leave without risk of job-loss, and possibly part-time hours. Indeed, flexibility has been found to be fundamental for achieving work–family fit (Stewart, 2013). Despite their importance, these job-related benefits are typically absent, particularly in low-wage jobs in the United States. All working parents, but especially those of children with SHCN, benefit from “mother-ready jobs” (Heymann, 2000; Pavalko & Henderson, 2006; Williams, 2010).
Certainly, work is important because without it families cannot survive in a society with a very limited public safety net. However, work is also important to positive self-esteem and sometimes as a source of relief from the challenges of care work. This is particularly true for families of children with SHCN—employment often relieves the extraordinary stress of care for children with atypical needs and provides a sense of self that is autonomous from one’s identity as a parent of a child with a disability (Scott, 2010; George et al., 2008).
Because employment is necessary, yet challenging when also juggling demanding care work, families of children with disabilities employ elaborate strategies to achieve work–family fit. Parents, usually mothers, in single- and two-parent families adjust employment duties, seek different jobs with high degrees of flexibility or fewer hours, compromise their expectations with regard to wage work, and seek empathic supervisors (Scott, 2007, 2010; Hogan, 2012; Rosenzweig, Brennan, & Ogilvie, 2002; Shearn & Tdd, 2000). Two-parent families rely on a variety of different employment and care arrangements between them, which sometimes entail one or both earners in part-time and/or flexible jobs, or sometimes divide the wage work and care work into distinct roles (Scott, 2010; Hogan, 2012; Lewis et al., 2000). Families with exceptional care responsibilities experience poorer workplace supports, which significantly affects their likelihood to modify their work patterns in order to manage their care obligations (Stewart, 2013). Even when dividing wage and caring labor is an option, it comes with costs: parents, usually mothers, experience high levels of stress and sleep deprivation (George et al., 2008; Warfield, 2005); they are more likely to work for hourly wages, miss work or cut their hours, resulting in lost income, and sometimes lost jobs (Brennan & Brannan, 2005; DeRigne & Porterfield, 2017; Stewart, 2013). Parents—typically mothers—sacrifice career objectives, which has lifetime wage penalties (Earle & Heymann, 2012: England & Folbre, 2002) as well as social/emotional costs (Scott, 2007, 2010; Gray, 2003; Shearn & Todd, 2000).
Navigating the demands of wage and caring labor is particularly stressful for single-parent families, who are disproportionately female-headed and low-income, and therefore often employed in highly inflexible jobs with no benefits (Povich, Roberts, & Mather, 2014). Concern for these families is heightened by the fact that rates of children with disabilities and chronic illnesses are disproportionately high in low-income families (Fujiura & Yamaki, 2000; Hogan, 2012), and children with limiting conditions live disproportionately in single-parent families (Cohen & Petrescu-Prahova, 2006).
The combination of male workplace models and the gendered organization of care results in particular effects for mother’s labor force participation. There is an immense literature that finds that, compared with mothers of children without SHCN and with fathers of children with SHCN, mothers of children with disabilities diminish their hours or leave the labor force altogether. Although this varies depending on family structure, financial resources, the severity of the disabilities, age of the child with a disability, the presence of other children in the family, and access to alternative sources of care, consistently mothers’ employment is disproportionately affected (Brandon, 2000; Cidav, Marcus, & Mandell, 2012; DeRigne & Porterfield, 2017; Gordon, Rosenman, & Cuskelly, 2006; Hogan, 2012; Leiter, Krauss, Anderson, & Wells, 2004; Lewis et al., 2000; Porterfield, 2002; Powers, 2001, 2003; Rogers & Hogan, 2003).
In this extensive literature debating the negative effects of care work on maternal labor force participation, researchers have paid less attention to the workplaces that facilitate mothers’ ability to manage work and family. In an effort to explore further, the relatively underexamined topic of job quality what good employment looks like in families caring for children with disabilities, here I consider mothers’ often convoluted paths to employment contexts in which better work conditions have allowed them to achieve some modicum of work–family fit.
When work works, the benefits are obvious: employment is more stable and with it family life is also more stable, stress is reduced, physical health and emotional well-being are improved, parents experience a greater sense of efficacy and pride in their work and parenting, and children do better overall (Brennan & Poertner, 1997; Home, 2004; Lewis et al., 2000; Shearn & Todd, 2000). However, to provide the balance necessary for employees to reap these benefits, workplaces must allow parents the flexibility to leave due to illness or necessary and unexpected care-related demands, or to schedule routine appointments without consequence to their employment; they must provide paid leave time and when necessary access to additional unpaid leave time. In short, they must be “mother-ready” (Albelda, 2002), or “parent-ready” in an ideal world where caregiving would be equally shared and not a gendered activity. Necessary as jobs with these kinds of workplace benefits are, they are rare.
Using data from qualitative interviews with parents of children with disabilities, I examine the experiences of the 24 mothers who were employed when I interviewed them (in 16 of the 40 families the mothers were not employed, so those data are not included in this article). I focus here specifically on the 12 who found their way to relatively “good” jobs and did not have full-time stay at home caregivers in their family. I analyze their pathways out of rigid, masculine-gendered workplaces to unusual contexts in which they found more flexible, “mother-ready” jobs in which they are able to manage wage work and care work. These cases tell us something about the importance of work–family fit for all families.
Method
Between summer 2005 and spring of 2008, I conducted open-ended, in-depth interviews in 40 families of children with disabilities (22 single-parent and 18 two-parent, all heterosexual) recruited through four social service organizations, a local school district, and personal contacts in a midsize city in Western Oregon. I relied on personal contacts in the schools to help recruit racial–ethnic minorities to the study. All parents who participated responded to my flyers, produced in English and Spanish, which described the project and informed them they would be paid $25.00 for their time. When interviewing the three Spanish-speaking respondents, I worked with a colleague who is fluent in Spanish and highly trained to conduct interviews. I interviewed 33 mothers alone (both single and married), four couples together, and three fathers alone (one single parent, two married).
I did not restrict participation by age of child, family structure, family income, or disability type. I used the same broad definition of disability used by the National Survey of Children with Special Health Care Needs: “Those who have a chronic physical, developmental, behavioral or emotional condition and who also require health and related services of a type or amount beyond that required by children generally” (U.S. Department of Health and Human Services, 2013). The disabilities in this sample included autism spectrum and attention deficit disorders, cognitive delays, bipolar disorder, learning disabilities, Down syndrome, and posttraumatic stress disorder, and other medical problems such as hearing, sight and speech impairment, cerebral palsy, velocardiofacial syndrome (a congenital malformation syndrome characterized by a range of symptoms), congenital heart problems, and cancer. For reasons I discuss below, the sample was overwhelmingly composed of families of children with social/emotional/behavioral and cognitive disorders (32/40 or 80%). Thirty-five percent (14) had more than one child with a disability. The families had an average of 2.4 children, with the number ranging from 1 to 6. The average age of the children was 12.5 years and the age range was 1 to 30 years. Fifty-five percent (22) were single-parent families. Fifty-five percent (22) were low-income families, based on the jobs held, hours worked, and income and eligibility for public benefits. Thirty percent of the families (12) were composed of people of color.
The sample overrepresents the population of families of children with disabilities in a number of respects: a disproportionate number of families have children with emotional/behavioral or cognitive disorders, have more than one child with a disability, are single-mother, and live below 199% of the federal poverty level. My sampling technique explains the disproportionate representation in these categories—I solicited voluntary participation, hence people for whom the study questions are particularly salient were most likely to respond. Families of children with emotional/behavioral and cognitive disorders, who have more than one child with a disability, only one parent, and low incomes have more difficulty negotiating work and family and therefore may feel more compelled to discuss their struggles. Furthermore, paying a modest stipend is more enticing for people with very low incomes, which might explain the overrepresentation of low-income families. The community in which I conducted my research is well known for its resources for children with emotional/behavioral disorders; therefore, it may attract families of such children to live there, which may also have contributed to their overrepresentation in my sample.
In my interviews lasting about 2 hours, through open-ended questions, I explored a range of topics, including employment histories and aspirations for the parent I interviewed as well as their account of the employment trajectory of the other parent, if involved with parenting; routines of care and services for the child with special needs; and strategies employed to negotiate the competing demands of employment and care work. In order to analyze the data, I chose to print hard copies of the interviews and code them by making notes in the margins. Initially, I established a set of codes derived from the literature and subsequently I recoded the data with in vivo codes that emerged from the interview data. Coding was an iterative process requiring multiple passes through each interview.
The focus of this article, the contexts and conditions in which work worked, emerged inductively from my analysis of their discussions of employment and balancing wage work and care work. Although it was not a theme I originally coded for in writing a previous article about the emotional costs of work that did not work (Scott, 2010), I realized there were some important lessons to be gleaned from the situations in which mothers found work that allowed them to provide care under the extenuating circumstances of having a child with a disability. For this article, I read closely the cases of those who had more successful employment outcomes to tell their stories in detail and found the two patterns of good jobs described below. In the discussion that follows, I refer to all respondents by pseudonym.
Findings
In my study of families of children with disabilities, “mother-ready” jobs were not the norm. Most of the families I interviewed described gendered caregiving arrangements: mothers were overwhelmingly the primary caregivers. They also described inflexible employment situations for both mothers and fathers, though as primary caregivers the mothers faced greater consequences. Some faced the extenuating circumstances of multiple barriers to work and ultimately could not sustain employment at all. Of the 40 families of children with disabilities I interviewed, only 1 single father but 16 mothers were unemployed for reasons related to care work and sometimes related to additional barriers. Their stories reveal poignantly the high costs of work, the impossibilities of employment for mothers who face multiple barriers including their own health problems, and the classically gendered choices in families where husbands work full-time and women ultimately choose to leave the labor force, even if that was not their plan prior to the birth of a child with special needs.
Among the 24 families in which the mother was employed, almost all described experiencing at some point employment circumstances that made it difficult to provide care. Eleven were still in such circumstances when I interviewed them. In only one family, the mother was able to manage her professional job because the bulk of the caregiving was provided by her spouse who did forego their career after the birth of their son with cerebral palsy. For most of these families, work did not work well but parents struggled to manage the conflicts between wage work and care work.
Rarely did families report work that really worked, with few costs or struggles to find a job where they could balance their family needs. However, in the 12 families in which the mothers had more success in finding employment that allowed them to balance work and caregiving, their experiences tell us something about what “mother-ready” might look like. There were two main sources of the kinds of jobs that better enabled mothers to provide the care their children needed: five interviewees were in professional sector jobs and seven worked in organizations providing services to families in crisis wherein the workplace was structured deliberately around an ethic of care and provided employees with the benefits they knew were crucial for balance and well-being in the families they served. That is, these organizations tried to model work–family well-being in the workplace.
Having a higher degree was a piece of the story of who ended up in these jobs. Except for two mothers, all of those who found work that worked had a bachelor’s degree or higher. However, having a higher degree did not guarantee balanced-worker employment. In four families (two single parent, two married couple) in which the mothers (and one single father) had higher degrees, the parents were unemployed. They all faced severe obstacles to employment—one single parent (the only single father I interviewed) had sole custody of a son with Down syndrome and struggled with substance abuse himself, and the other single unemployed mother had two children with serious social/emotional/behavioral disorders; one couple had a son with severe autism and profound behavioral challenges, and neither parent was employed; one unemployed mother dropped out of a PhD program to care for her multiple children with disabilities because she surmised that her husband, who was closer to finishing his PhD, stood the best chance of getting a stable job given gender bias in academia.
In two single-parent families and one married couple, the mothers had high educational attainment but were employed only part-time and felt they were not fulfilling their career potential. They experienced diminished aspirations in the context of caring for their children with social/emotional/behavioral disorders and in one case an intellectual disability. All three obtained work that works by compromising their aspirations (Scott, 2010).
Below, I explore in detail the experiences of the mothers who found jobs in either the professional sector or in a service organization that modeled work–family fit. Their experiences reveal much about what is possible when workplaces are structured to support families. They also reveal the challenges of parenting children with disabilities even with the best of the work supports and flexibility necessary to provide the care required. From their stories, we see how few and constrained are the pathways to jobs that enable a balance of work and care, and also how extraordinarily important these rare spaces are as a model all workplaces should strive for. All of their stories are riddled with examples of the challenges of work–family fit in families of children with disabilities: altered perspectives on the future, a diminished sense of efficacy as an employee, and children’s needs that exceed the flexibility of the workplace and force parents to seek alternative employment. Many found work that works only after very long and difficult employment trajectories involving many jobs that were not “mother-ready” and where they were expected to be “unencumbered workers” before they found work that allowed them to be more balanced.
Professional Sector Employment
In three of the families I interviewed, the parents all had PhDs and were employed in university settings. Their experiences were mostly positive relative to those of many parents I interviewed—they described having “everything they needed,” including resources, autonomy and flexibility at work, decent insurance, supportive employers and coworkers, and involved co-carer spouses. The mothers in these families all maintained their employment in the university settings. In one two-parent family, both parents were employed on the faculty; in another, the father abandoned his goal to find employment in academia in order to provide full-time care and thereby allow the mother to focus on her career as an academic. In the story detailed below, a single mother manages to juggle wage work and care work. As jobs went, the university setting was more flexible and supportive than most.
Pamela was a single mother who worked in a university-based research center with children with disabilities. She provided foster care for years before formally adopting the children, whom she met through her work. As she put it: “I kind of got an idea of what I was in for.” Both children were born drug addicted, premature, and low birth weight; one experienced a traumatic birth and had cerebral palsy. In order to care for them, initially Pamela took leave without pay but was paid through the foster care system. After a few months, the program she ran at work “started suffering, so my whole staff said, ‘You really need to come back here.’” Running her own research and services program, Pamela’s schedule was very flexible, and she could bring her children in to work when she needed to. As the years went on and her children’s needs shifted, the flexibility continued to benefit her as a single parent of two very high-need boys. When schools called her, she could leave. There were times when Pamela reported she had to be at the school three times a week. Despite the job security, Pamela experienced extraordinary stress caring for her children: she had little respite from the extreme behaviors they exhibited, she did not expect that they would ever live independently so she began investigating adult group homes when they were still fairly young, and her entire life was consumed by either caring for her children or organizing and providing transportation to services. Friends would ask, “How are you doing this?” She told me: I don’t want to think about how I’m doing it. That I am is good enough for me. It is tough. When my friends ask, “Isn’t it just exhausting?” I’m not going to think about that. Because I can’t.
With a flexible and supportive work environment, and with the background and knowledge acquired from working with children with disabilities, Pamela was surviving, but barely, given the absence of any support or respite services for her as a single parent.
Other mothers professionally employed were in government, nursing, social work, and journalism. Only Julie’s employment in government had been stable in the context of caring for a child with special needs. Julie’s story reveals most clearly what work supports can mean to a parent dealing with the special needs of a child. Her workplace allowed her to provide care and continue in her job. For Julie, the employment was not just financially critical but also crucial to her sense of self and stability in the context of having a child with a terminal illness. Julie’s 13-year-old daughter had been fighting end-stage cancer for 4 years. Julie said it was a full-time job providing care, chasing medical bills, and dealing with insurance, and then she worked full-time in her paid job. Her daughter’s illness required Julie to spend many days and weeks living at the children’s hospital in another city, or driving 2 hours there so her daughter could receive daily treatment. Julie was able to manage these extremely stressful circumstances and maintain her job because she was a government employee who could cobble together an array of personal and work supports, including sick and vacation time, overtime work when her daughter was not in an acute phase, leave time donated by her coworkers, and short-term disability leave. As a professional with highly valued skills and empathic employers and coworkers, she did not fear being fired, a privilege she valued enormously.
Despite job security, it was still hard to cope: I have everything I need. I have two great health care plans, the support of family with resources, a supportive husband, an amicably divorced dad involved, a kiddo who is really high functioning . . . I have the most supportive work environment with the best benefits possible, and donated time-management . . . I have everything a person could want to handle this, and I still feel like falling apart, that I can’t do it.
It is hard to imagine the conditions in which one could handle the fact of a daughter’s end-stage cancer. For Julie, work worked not just because she had job security but also because it gave her a sense of self and purpose, even while the care work inspired work-related guilt: I have a career that is wrapped up in my identity. The kind of work I do reflects who I am . . . It feels really sucky to not be able to do everything that you’re assigned to or that you’re capable of, or to continue to work but at a capacity where you know people are going, “Oh well, we’ll cover just in case. . . . Don’t worry about it,” Well no, I just want to be here and reliable and dependable, but you’re not. You’re just not dependable.
However, the bottom line for Julie was, “I still need this other me, the worker me.” In all likelihood, Julie’s daughter would not live to see her late teen years, and Julie needed to retain her identity through work. Many of the mothers I interviewed had lost this sense of self entirely; as one mother put it, “I feel as if I’m the one who is disabled” (Scott, 2010). They were unable to retain, or even recall, the competent, productive workers they had been before their struggles to manage wage work and care work in the context of parenting a child with disabilities. In this instance, work worked because Julie could do it while also performing the care work for her daughter, and it provided her with a positive sense of self, something very dear to Julie.
Connie and Kayla both had higher degrees and professional employment, but their pathways to work that worked were long and convoluted. Both single parents, they struggled within the confines of their original workplaces to manage their work–care obligations. They both eventually left and made their way to new employment. Connie ultimately found a job connected to her prior work as a nurse, and Kayla entered a field new to her.
Connie had a BS and a nursing degree. She was the single parent of two daughters. Her youngest, 11 years old when I interviewed her, was born prematurely and suffered an intracranial bleed and breathing problems when she was a week old. At the time of her birth, Connie was a charge nurse in ICU. She intended to continue to work but ended up taking a 4-month leave to be with her daughter in the hospital. When she returned to work, she did 12-hour shifts 2 and 4 days each week, keeping the other days free for her daughter’s appointments. The ability to take a leave and to rearrange her schedule on her return to accommodate the demands of the care work were privileges of her profession and employment as a high-skilled nurse in an ICU unit of a hospital.
When her daughter was about 18 months old, they found she had both cerebral palsy and cognitive delays, probably due to oxygen deprivation. Connie could not manage all the appointments for the services her daughter required, even with some weekdays free to do so. She said, I had to cut back on my hours at work for [my daughter’s therapies]. I took another part-time job where I would work graveyard shift on a weekend so that weekdays, which were optimal days that OT/PT would be available, I could take her to the visits. I cut to part-time at the hospital, which increased my insurance costs; things just continued to not really balance real well.
This was the beginning of a very long period of juggling many different part-time jobs with part-time nursing, at the cost of higher insurance and tremendous financial strain.
Eventually, she left nursing altogether and with it the patchwork of part-time jobs. Because of her expertise as an ICU nurse and a parent of a child with disabilities, she found a full-time, flexible position with the state helping families with medically fragile children provide care in-home: The really good thing is that the state has a precedence of making you say family is your priority, so [the job] is flexible . . . [So you can schedule your own hours?] Exactly. As long as I do my forty hours a week, Sunday to Saturday, even evening hours . . . I kind of pulled my nursing experience, brought in my parental experience, and . . . [now I] work with kids that would live in a hospital. That’s where my ICU experience came in, because easily half of these kids are on ventilators at home. [I help] parents learn how to let nursing agencies, medical suppliers in their home, help them learn how to organize . . . so their house has to now be their hospital, and that is home so the kids do so much better.
Connie worked with families, counseling them on everything from what questions to ask medical professionals to how to provide care in the home. She had been in the job for more than 4 years when we talked. Finally, stable in employment that worked for her family due to the enormous flexibility it offered, she also loved the job that drew on her dual experiences as an ICU nurse and the parent of a medically fragile child.
Like Connie, Kayla’s story also illustrates both the privileges and limitations of professional employment. Kayla had an MA degree in social work and was the long-time director of a tribal social service agency. Her youngest of three sons was born prematurely and medically fragile. He was later identified as having cognitive delay and learning disabilities. She took a leave from work, but when her son was a few months old she returned for financial reasons. She said that it was difficult to return to work—she had the flexibility she needed, but emotionally it was difficult: Even though my employer tried to work with allowing me flexibility in my work schedule, I think that [my son] stayed on my mind a good part of the day. I never could just kick it into high gear and focus on the things that I really needed to focus on in my career. . . . When you’re running a child abuse investigation, from a caseworker’s point of view, I really felt that my workers were at their best when they had guidance or support from me. And if I wasn’t there when those decisions had to be made, I felt that I was short-changing them. So, there was flexibility, but for me personally and professionally it wasn’t flexible . . . I really felt that my credibility or competence was sort of being questions by my staff.
With a strong support system through her family, she managed to sustain that job another 5 years, but the feelings of inadequacy and the emotional conflict she felt between providing good care and being a good worker were too much for her.
Kayla left her job and moved to a city from a rural part of the state in order to access more services and a school where her son was not the only biracial African American/Indian child. While settling into a new home and city, Kayla took a year off from work and then returned to a full-time job as a health educator for American Indians. The ensuing years entailed multiple challenges for her son: traumatizing placements in classrooms for children with disabilities, struggles with self-esteem, identity, and learning, and finally he dropped out in ninth grade. Her days were filled with her full-time job and doing the advocacy/support her son needed. They tried many different programs, and were seeking alternative high school programs for him when I interviewed Kayla. She also moved back to part-time work. She reflected as follows: He’s a bit more stable, but he has his good days and his bad days. My decision to move from full- to part-time is all about, I need to stabilize this boy. I also am relieved that I’m not full-time. A lot of my time is spent just managing and controlling my own son.
Despite the financial costs, part-time work was worth it to Kayla because it allowed her to handle her son’s needs and to consider a new career track for herself: A year ago I considered the need to get my graduate degree. I thought, I’ve got to do Masters of Education, emphasis special ed. . . . Combine that with my social work experience, and combine that with my advocacy [for her own son], and then combine that with my being culturally sensitive. My heritage is American Indian. I’m really proud, even though I know the historical trauma of our culture.
Although her story of career transitions was long and not yet over when I interviewed her, Kayla reveals how her professional training and educational attainment, and her personal and political experiences as an American Indian and parent of a son with disabilities, allowed her to seek employment in which she was able to balance work and care satisfactorily.
Caring Organizations, Caring Jobs
The other common source of work that worked was in organizations in the field of disability services. A number of the mothers I interviewed told stories of extreme difficulties balancing work and care, moving from job to job, but finally becoming employed in organizations that understood their predicaments because they provided services to families of children with disabilities, or in one instance victims of domestic violence. In these sites, the managers and employees knew firsthand through the families with whom they worked the extraordinary difficulties of balancing work and care in jobs structured on male models of unencumbered workers. To the extent possible, they created workplaces that reflected the ethics and values inherent in a mother-ready approach to wage labor. These were caring jobs. With one exception, none of the mothers I interviewed were on an intentional path to this work; they arrived there after long and difficult journeys through many other jobs. Their expertise as parents of children with disabilities was key to their entry into organizations that offered them the possibility of work–life fit.
Diane, Suzie, and Karli were single mothers who worked part-time in organizations for families of children with disabilities. All three had other sources of financial support (supportive parents and/or child support) that allowed them to work part-time in these organizations. The road there, and the experience in the job, was more difficult for Karli than it was for Diane and Suzie, but they all expressed gratitude for their work in organizations with employers who “got it” and were willing to grant them some of the flexibility their lives demanded.
Diane was the single parent of a 9-year-old with autism who struggled with violent rages. His needs required that she have a job with complete flexibility. She found the flexibility she needed in a research firm that produces educational materials for people with disabilities. She said, The reason I work part time is that I fit my schedule into [my son’s] needs so that I can be present with him after he’s out of school. I can do his homework with him, like if he had OT or any other needs, I’m there.
She worked for an hourly wage with no other workplace benefits: “I just have the flexibility and that in itself is a benefit and their support. I could not ask for a better place to work.” With the combination of child support, subsidized housing, and Food Stamps Diane managed on the low income from her earnings.
Diane had her own health problems: I have chronic fatigue and fibromyalgia. I did have a high blood pressure crisis where my blood pressure raised to 200/100 and ended up in emergency. You know, I think it’s just years of ongoing stress and not exercising and taking care of myself since the focus has been on [my son]. There’s been no focus on me. Except for working and coming home and taking care of [my son].
This was not uncommon—in many of the families, the parents also had health problems themselves (18 of 40 families, 14 mothers), often preventing them from working at all or causing them to work intermittently. Given her own health problems, Diane felt lucky to have found a job in which she could provide care for her son and manage her illnesses. Diane was able to take time off when she or her son got sick, or during the summer when her son was out of school and she could find no alternative care. Recounting a time when she missed work for weeks, she remarked: “Where I work, they are very supportive and understanding. I was worried, am I going to lose my job, but they like me so they are very flexible.”
Susie, the parent of a 5-year-old son with cerebral palsy, relied on her part-time work in an early intervention classroom. She, too, was grateful to her empathic employer for her ability to focus her attention where she thought it belonged, on her son. She said, I missed quite a few days and there were no concerns on my review. They knew when they hired me that my son has disabilities . . . so they understood that I’m a single parent and if I’m sick or he’s sick, I’m going to miss work. It’s an ideal work situation, but it’s tough. I work with kids with disabilities all day and then I come home to my son, and I get pretty tired. But I love it. I do love it. Things are stable and I like that for right now.
Although Susie only worked part-time, she had full benefits in addition to her hourly wage.
Karli was finishing her master’s degree in early childhood intervention when her son’s doctor raised concerns about her son’s development. She described his increasingly erratic and disruptive behaviors, which were difficult to negotiate while also establishing her own career in the field. Reflecting on her 3 years in a classroom for children with social/emotional/behavioral disorders, she said: “Total burnout . . . I don’t know if I can ever do it again, teaching kids with autism and severe disabilities, all the same age as my kid.” She moved on to a full-time position in another organization working with “really hard kids.” At the same time, her son’s challenges increased: “I’m being called to pick up [my son] who’s suspended for a period of time, and I’m having trouble time-managing.” Even in an organization working with children with disabilities, the disruptions due to her own child’s needs meant that she only lasted a year in that job: “I’m skilled, but I could not hold it together. Everything was falling out from under me.”
After a period of unemployment, she got another job with an organization serving the families of children with disabilities. With financial assistance from her parents, she worked 30 hours/week. In order to work full-time, she either needed to hire someone to care for her son after school in their home, which she could not afford, or she needed to put him in an after-school program, which did not work for him. Though not her dream job, it worked for now. Karli said, I need to stay here for a little while. I like this work, I like the people here, and I think this is the first job where I’ve felt like I can give the insight I’ve learned. . . . I come across a lot of moms like me. . . . It’s appropriate at times to say, I have a situation similar going on with my son’s school. . . . You understand better with the connection.
After the loss of her last job, Karli did not take this job for granted. She did not want to “get in trouble” for taking time off, and concluded our interview by acknowledging the stress in her life, still. Although she had more flexibility at work than she did before, it was still limited and she struggled to manage her child’s unpredictable needs even in a sympathetic workplace.
Darcy also described a highly erratic, unstable employment history, including periods of welfare receipt, despite having a BA and being married. The demands of care work for her children and her husband drove her exits from various jobs. Initially, she left the labor force to care for her four young, apparently typically developing children. Her husband was able to support them at the time. Like many mothers, she returned to work when her children entered school. Although three of four of her sons had social/emotional/behavioral disorders, it was the problems of one son in particular that forced her to leave her job despite her boss’ willingness to negotiate a flexible schedule. When she started work again it was for an organization serving families of children with disabilities. First, she volunteered and subsequently she got a part-time paid position. Then, her husband’s disabling condition forced both of them to leave the labor force for a period of time during which the family received welfare. When Darcy was forced to work in the welfare employment program, she cycled through a series of low-wage retail jobs. She even tried to make ends meet by working two jobs at one point, one of which was again in the organization for families of children with disabilities, but juggling two jobs was “killing her,” as she put it. Finally, she was hired full-time at the service organization. There, she felt fully protected from the unpredictable exigencies of her son’s needs: It’s an agency where they “get it.” I could call in and say I’m not coming in, he’s having an issue. Pretty much anything, I could call in and I wasn’t going to lose my job. [And] I could do my work, get it done, and be able to go home [to care for her children].
Darcy noted in our interview that she credits her son with her new career: “I wouldn’t be doing what I’m doing right now, had it not been for my son and his disabilities.”
I conclude with Marla’s story, which reveals the extraordinary challenges some women face on the path to work that works. Marla’s daughter, who has attention-deficit disorder, was 4 years old when Marla gave birth prematurely to a son with severe congenital heart defects. He had five heart surgeries before the age of 6 years. Separated from her husband when her son was born, Marla lived in extreme poverty while caring for a very sick baby. She entered an abusive relationship, partly due to the desperation created by her financial circumstances and her care work obligations.
The first couple of years, we didn’t even know if [my son] was going to survive. It consumed all of our life . . . I had no time to deal with [my daughter’s] needs. I was trying to get out of this abusive relationship. I had to focus on [my son].
Unemployed when the kids were young, Marla got Supplemental Security Income for her son and received cash welfare and Food Stamps, but she knew this was time-limited: I saw the writing on the wall about what was going to happen with the welfare system . . . and realized that I wasn’t going to be able to stay at home with him much longer. So I started going to [a community college] and got financial aid. Back then financial aid was more and with lower interest, so we were able to get enough to supplement our income.
In college, she became involved with a program for returning women students, where they helped her get Section 8 housing assistance that allowed Marla “to get away from my partner.”
School was something Marla could manage. When Marla had to miss school due to medical emergencies she did not have to drop out, nor was she fired. In her last terms in school, she was cut off of cash welfare entirely when the PRWORA (Personal Responsibility and Work Opportunity Reconciliation Act) was passed and school activities were no longer approved for welfare recipients. Marla noted the irony of the welfare system’s “active hostility,” as she put it, toward higher education. She said, They called me and said “You are not being personally responsible, and you need to drop out of school and make thirty job contacts a week or we are cutting your assistance.” And I said, I’m graduating in 4 months; why would I do that? That’s really stupid. Wouldn’t you want me to graduate and get a job so I won’t have to get back on welfare?
She lost all assistance, including Food Stamps, rather than quit school at that point.
With a son with severe cognitive delays in addition to the heart/lung disease, and a daughter struggling with attention-deficit disorder and other learning disabilities, Marla devoted herself to advocating for her children. Despite school loans and credit card debt, Marla could only look for part-time, flexible work so that she could be available to her kids: “I felt like I had to make the sacrifice of being poor so that I could raise my kids so that they can make it in this world.”
After some job losses, Marla found a part-time job in a service organization working with victims of violence. Between the willingness of the organization to grant her flexibility, and her ability to use sick time and vacation time to cover her absences for her kids’ health emergencies, she held on to the job. The longer she was in it, the more devoted she became. She began to work hours exceeding those she was paid for and to take on greater responsibilities. That they accommodated her needs “makes a huge difference,” Marla reported.
I don’t know that a lot of jobs are flexible enough for someone like me, but the fact that I found a place where I like the job and it’s meaningful work and it’s a feminist agency, where they care that women have lives and kids, that you are human, and they can make room for that.
Marla was rewarded for her commitment to the agency—she became the director of the agency. Landing in a feminist social service agency was both serendipitous and the result of her life experiences and persistent, hard work. This was a workplace that recognized and accommodated her as an “encumbered” worker with other substantial responsibilities at home. Marla found new meaning in wage work and a new sense of possibility through her job at this feminist agency.
Discussion
The spaces in which jobs are more mother-ready are currently rare. In my study, only those in professional settings (like universities) or social service and activist organizations built on an ethic of care had some of the workplace supports necessary to begin to balance employment and caring labor. Most of the mothers I interviewed who found more supportive, flexible family–friendly workplaces, did so after long periods moving in and out of jobs in which the male model of work and caregiving made it difficult to achieve work–family balance. Most of them had a college degree or higher, and though about 25% of the mothers in my sample identified as women of color, only 1 is among the 12 who found work that worked. These rare “mother-ready” workplaces provided extensive sick or vacation leave which could be used for care work; granted autonomy and the ability to set one’s schedule or work odd hours and split shifts; and allowed workers to leave early, come in late, skip a shift, and manage children’s needs over the phone. As Pavalko and Henderson (2006) also argue, I found that workplace policies are key to the success of all caregivers in managing wage work and care work. Policies that create more workplace flexibility are particularly critical for single mothers who have no one else on whom to rely for household income or contributions to the care work.
Mothers I interviewed developed expertise in the field of disabilities through their experiences parenting and were able to exploit that expertise in jobs they never dreamed of, indeed jobs they were not qualified for prior to their personal experience raising a child with disabilities. In these jobs, they reported enormous satisfaction both in being able to balance work and family, and in their experience of competence and skill which made them valued workers. These mothers described benefiting from their employment in ways researchers find to be common when there is work–family fit: feeling as if they are productive, capable employees as well as good mothers; relief from the constancy of care work; and time for interaction with other adults (George et al., 2008; Shearn & Todd, 2000). Through their children, a lucky minority in my sample were able to thrive as employees in rare organizations that approached the status of “mother-ready.”
While the stories of finding work that works offer the hope that it is possible to structure workplaces to foster work–family fit, the tales of what it took for most mothers to find such spaces also remind us of how far most workplaces are from this model. In a male workplace model, jobs appear gender neutral but rather are organized by masculine norms that require unencumbered workers to rely on the presence of a homemaker to perform all of the reproductive labor (Acker, 1990; Williams, 2000, 2010). Economic necessity has meant that poor and working class families, many of them people of color and/or single parents, have not had this privilege. Because of the gendered organization of care work, overwhelmingly mothers incur the costs of juggling incompatible obligations. Since the 1970s, White women’s labor force participation across class has increased and male employment in stable working-class jobs that pay family wages has decreased. Given the pervasive masculine workplace model and gendered organization of care, the elusiveness of work–family balance persists (Albelda, 2002; Collins & Mayer, 2010; Heymann, 2000; Stone, 2007; Williams, 2000, 2010).
Even women I interviewed who were employed in the professional sector, experienced difficulties balancing work and family; some women were forced to leave their jobs, and sometimes their careers. The departure of professional women from the labor force to provide care—the realization that we “can’t have it all”—has been the focus of much media attention in the United States in the past 10 years. In mainstream news, this is framed as a choice, even a natural gendered preference to provide care. Feminist sociologists argue rather than choosing to leave the labor force because they want to spend time with their children, women are leaving because the structure of the workplace forces women out of jobs. Employers are inflexible, or, worse, women are fired in egregious expressions of workplace bias against mothers (Stone, 2007; Williams, 2010).
If most families, including but not exclusively families of children with disabilities, need jobs in which they can manage both employment and care, it is imperative that we continue to examine and promote workplace policies that enable us to create the conditions for better work–family fit. In the United States, we do not mandate workplace supports and benefits that make possible work–family balance. Those that exist are a far cry from what can be found in other industrialized nations. With these jobs difficult to find for those with higher degrees, and virtually nonexistent for those without, I join organizations such as The Center for Law and Social Policy (CLASP) and The Working Poor Families Project, among others, in arguing the imperative to advocate a vision of employment organized around the norm of employed caregivers.
CLASP takes the position that job quality is critical to the health of both the economy and the family: “Jobs—particularly good jobs—are the core of the American economy. Good jobs allow workers to meet their families’ needs and save for the future” (Ben-Ishai & Lower-Basch, 2014). They argue that the postrecession economy is characterized by diminished job quality—that is, more jobs that pay poverty wages, provide few benefits, offer little stability in hours and schedules, and few opportunities for advancement. In other words, growth has occurred primarily in jobs that are the antithesis of the mother-ready jobs that worked for the women I interviewed. Consistent with the data from my interviews, CLASP also argues that the elements of a good job include employer-sponsored health insurance, access to paid leave for short-term or long-term family care, advance notice of schedules, and a modicum of flexibility. Alarmed by the economic transitions in which job quality is declining, organizations such as CLASP, the Economic Policy Institute, The Working Poor Families Project, and more, are promoting a host of new policies and making the case to strengthen existing policies to support “a labor market characterized by full employment and high-quality jobs” (Ben-Ishai & Lower-Basch, 2014).
Workplace practices that allow for greater flexibility, protect jobs when workers are forced to take family leave, and financially support workers when they do have to take leave through paid family leave and job protection are feasible and good for the economy. For evidence of this, we can look to other industrialized nations or we can look to best practices in the United States (Williams, 2000). For example, in her review of the strategies in high-level professional organizations and in manufacturing, Joan Williams (2000) found that in both settings flexibility can be attained. Leaves, part-time work, telecommuting, job sharing, flextime, compressed work weeks, stable schedules, on-site child care, subsidized child care are all strategies that have proven useful in allowing employees to parent and be dependable workers. There is no one size fits all solution for workplaces, hence there must be a measure of flexibility in what is expected to restructure jobs. In this restructuring, employers also gain: worker turnover is reduced, saving employers considerable costs of retraining workers and allowing them to retain valued employees; worker productivity increases and absenteeism decreases; employees are more dedicated and loyal, which contributes to their productivity; and finally, with these benefits, employers can attract the highest quality workers (Williams, 2000).
Although low-wage employment is overwhelmingly characterized by the qualities of bad jobs, through a return to an era of greater government regulation our society could have the power to do what individual workers cannot do—impose standards for good jobs and reward the employers who cooperate (Ben-Ishai & Lower-Basch, 2014). Furthermore, with the expansion of the precarious worker in the U.S. economy—“the precariat is everywhere” (Heller, 2017)—some are arguing for restructuring workplace benefits such that they be attached to the state, rather than the employer, and follow the worker. Enforcing better workplace practices and the creation of good jobs by corporations, or improving universal benefits for all workers, are not mutually exclusive strategies. However, both require government intervention. Workers in precarious low-wage jobs and jobs emerging in the growing gig economy particularly could benefit from the idea of a 21st-century social compact that ties workplace benefits like health insurance and paid leave to the employee through state support rather than the corporation (Heller, 2017).
Finally, how might we convincingly argue that the state has a legitimate role in mandating the benefits of good jobs and providing worker supports? By making explicit the relationship between good jobs and necessary family work, and fostering the understanding that care work is a public good. Care work is both an economic necessity and ethical imperative (Duffy, Armenia, & Stacey, 2015). Through the labor of care, we create the next generation of workers and families, as well as tend to the needs of the elderly and others with compromised independence. The benefits of care work reach far beyond the individual recipients of care by contributing to the economic and general well-being of the entire society (Duffy, Albelda, & Hammonds, 2013). Care, Duffy et al. (2013) argue, should be considered a fundamental social responsibility and a public good.
As a public good and a social responsibility, the state’s involvement in care provision makes sense. Through a combination of mandatory workplace restructuring and social supports, the state can facilitate the organization of jobs to assure work–family fit. In this context, people would have a right to the resources and time to provide care. Furthermore, for those incapable of achieving work–family balance due to the extraordinary demands of their care work obligations, we should recommit the public resources necessary to support their labor as care workers. Recognizing the collective imperative and benefit of care work, labor markets should be required to institutionalize family–friendly practices that enable workers to remain employed, and public spending ought to be directed at supporting those providing the care from which we all benefit. In this context, perhaps all families might thrive, even those who bear the challenges of caring for children with disabilities.
Footnotes
Declaration of Conflicting Interests
The author declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author received no financial support for the research, authorship, and/or publication of this article.