This article presents three critical case studies that explore the relationship between income and parental involvement in the education of children with developmental disabilities. Interviewed as part of a larger study on mothering children with developmental disabilities, Joy, Jackie, and Maya 1 are low income mothers of children with severe developmental disabilities living in New Hampshire. These women describe carefully planned parenting practices designed to foster child development, which yield both engagement with and strategic disengagement from formal bureaucracies. This is a decided departure from previous theorization on low income mothers' approaches to child development. Grounded analysis of these interview cases suggests that emotion management may be a critical factor in both structuring parental involvement with educational systems as well as enacting class differences within the special education system.
Parenting behavior has long been the object of social scientific research. Though varied, most theories translate into social imperatives for parents to be increasingly involved with complex institutions on behalf of their children (Hays 1996; Lareau 2003; Blum 2007; Landsman 2009; Sousa 2011). As children's educational needs intensify with the presence of developmental disabilities, the expectations placed upon parents, particularly mothers, are intensified as well. Mothers of children with disabilities are deemed vigilantes (Blum 2007) and warrior-heroes (Sousa 2011), battling social systems to gain services and support for their children. However, these heightened expectations often serve as reproaches to low income mothers who are viewed as having less involvement with educational processes than their middle class counterparts (Lareau 1987; Fruchter et al. 1993; Simoni and Adelman 1993; Epstein 1995).
Whether ascribed to unfavorable personal attributes or a lack of cultural capital, discussions of low income mothers' perceived lack of involvement with educational decision-making has emerged as a literature of its own; yet, few researchers and practitioners have questioned the universality of these assumptions. Even when viewed through the lens of structural inequality, researchers have described low income mothers as favoring "natural development" processes (Lareau 1987) or as placing demands on children (Maccoby and Martin 1983) rather than engaging in strategic or systematic parenting practices that advance child development.
This article presents extensive, ethnographic interview data with three low income mothers of children who experience severe developmental disabilities. These women articulate many of the challenges noted in previous research in which race, class, education, and culture present barriers to advocacy within legalistic institutions. However, each of these mothers also conveys a thoughtful process of engagement with and strategic disengagement from educational bureaucracies and alternative resources to advance child development. Decisions about engagement are informed primarily by mothers' self-perceptions of their abilities to balance knowledge and emotion in public spaces in exchange for services.
Specifically, three ideal types of low income maternal advocacy are explored: (1) the warrior-hero battling against bureaucrats to obtain resources, (2) the surrogate advocate serving as an educational decision-maker in place of parental presence at school, and (3) the disengaged parent removing herself from the adversarial educational system and positioning herself as a home-based support for her children. These ideal types are a significant departure from previous theorization about low income mothers' cultural predisposition to avoid child development expertise entirely. Instead, the parenting practices of these women offer poignant examples of underexplored advocacy efforts of working class women on behalf of children with developmental disabilities. Likewise, these case studies serve as critical counter-examples to current parental involvement theories.
INTENSITY AND ABSENCE: EXPECTATIONS OF MIDDLE CLASS AND LOW INCOME MOTHERS
Scholars and policy makers agree that parental involvement in education is the fundamental attribute of an academically successful child (i.e. Fan and Chen 2001; Hill and Taylor 2004; Jeynes, 2003, 2005). Yet, the phrase "parental involvement" is often used ambiguously to describe myriad and sometimes divergent activities, including helping children with homework, attending parent-teacher meetings, and taking part in institutional policy making and governance (Cotton and Wikelund 1989). Despite conceptual vagueness, programmatic emphasis continues to promote school-based parental involvement in academic skill building as the paragon of child development. As a corollary, there is a relative disregard for parental dedication to emotional and motivational home-based activities (Hoover-Dempsey and Sandler 1997). Ironically then, good parenting behavior is measured largely by bureaucratic activities performed outside of the home and in the absence of the child.
Despite previous cultural dictums relegating parenting to the private sphere, contemporary expectations of parents, particularly mothers, 2 reinforce an external focus of parental involvement in child development and add an aggressive dimension to the endeavor. "Good" mothers are obligated to parent with "intensity" (Hays 1996), accessing professional advice and services to advance children's development and engaging in concerted efforts to cultivate desirable outcomes (Lareau 2003). Educators, physicians, and psychologists guide the child-rearing process, steering parents through a maze of seemingly arbitrary child development milestones with handbooks, manuals, and professional checkpoints designed for parenting "perfect" children (Landsman 2009). Failure to adhere to these normative standards brings adverse consequences, including maternal stigma and professional predictions of undesirable child outcomes (Hays 1996; Caplan 1998; Rapp 1999; Blum 2007; Landsman 2009; Sousa 2011).
For middle-class mothers of children with disabilities, the intensive mothering paradigm is exacerbated. These mothers are not only encouraged to seek out professional resources, but to fight for cutting edge therapies to mitigate the impact of disability on their children no matter the cost (Blum 2007; Sousa 2011). But for low income mothers, cultural and political expectations are presented differently. Low income mothers are portrayed as being less involved in and more resistant to formal child development activities than their middle- and upper-class counterparts (Lareau 1987; Fruchter, et al. 1993; Simoni and Adelman 1993; Epsteian 1995; de Carvalho 2001) even as they are cited frequently in social research as being more likely to parent children with impaired cognitive and language development, behavioral challenges, and poor health (Fujiura and Yamaki 2000; Emerson 2004; Fujiura and Parish 2007; Shannon, 2009). The literature also cites a dearth of school involvement among parents of ethnic and racial minority groups (Finder and Lewis 2006).
Some researchers attribute the absence of low income parental involvement in educational institutions to individual parenting styles or to ill-suited behavioral control mechanisms, perhaps, derived from neighborhood and cultural influences (Darling and Steinberg 1993; Payne 2003). Other scholars, such as Annette Lareau (2003), argue that structural factors are at play: systemic class bias impedes low income parents' involvement in homework, participation in school-based events, and compliance with school standards by assuming extensive leisure time and a priori knowledge in the structure of such activities. Under either rationale, the implication is that low income and working class mothers are ill equipped to sustain meaningful participation in an educational environment and, by extension, to serve as educational advocates on behalf of children with developmental disabilities.
Instead, low income parents are said to rely on children's "natural development" in which youngsters have limited access to structured activities beyond the walls of mandatory public schooling (Lareau 2003). Low income children are left to invent pastimes, which enhances their creativity, but provides less experience in contending with formal social systems, negotiating with authority figures, and advancing strengths in academia. These differential experiences ultimately place low income children at a competitive disadvantage when vying for academic and workplace success.
Despite the ample research on the minimal parental involvement of low income mothers, the working class mothers interviewed in this study were engaged substantially and strategically in cultivating their children's cognitive, social, and emotional development even when absent from school-based interventions. This suggests that some low income mothers may, in fact, apply concerted cultivation strategies, but may not be recognized and viewed as engaged parents. Instead, mothers' advocacy efforts are often dismissed and, as a result, these low income mothers are further alienated from systems designed to support their children with developmental disabilities.
RESEARCH DESIGN AND METHOD
Used as framework for ethnographic fieldwork, case studies introduce the potential for deep, qualitative refinement of existing theoretical propositions or outright challenges to prior theorization (i.e., Liebow 1967; Duneier 1994). The case study data analyzed in this article comprise one aspect of a multi-method study on mothering within modern disability bureaucracies. Low income mothers of children with developmental disabilities volunteered to participate in ethnographic interviews regarding their interactions with social systems. Advertisements were posted in community-based, disability service agencies; parent information trainings; and statewide disability advocacy email lists of parents in New Hampshire. The participating mothers engaged in multiple intensive interviews ranging from forty-five minutes to three hours per session. In addition, they offered pictures, blogs, email communications, home visits, and interactions with family members to describe their experiences of raising children with developmental disabilities. Prior to the interviews, mothers filled out a short questionnaire detailing biographical information, including, but not limited to, data such as household income, number of children, and children's diagnoses.
Interview questions were open-ended and designed to uncover the nature and context of low income mothers' interactions with disability bureaucracies, specifically schools, healthcare providers, and social service networks. Interviews elicited information about mothers' relationships with their children as well as examining their perceptions of cultural parenting expectations, interactions with professionals, and experiences with accessing disability service systems. Interviews were audio-recorded and transcribed by the author. Using a grounded theory approach to discourse analysis, the transcripts were coded and categorized (Glaser and Strauss 1990 and 1998; Charmaz 1995; Wilson-Scott 2004). Emergent themes developed throughout the data collection and analysis with the role of emotion management in educational decision-making being one of the most prominent trends across the interviews. Over the course of the interviews, mothers spent minimal time describing what services were provided to their children and which of those services was most helpful. More often, the narratives focused how mothers felt about the experience of interacting with educators and how those feelings translated into advocacy, social interaction, and personal behaviors within bureaucratic contexts.
Three participants were selected as sources of case study data. Joy, Jackie, and Maya are unique among the women interviewed in their adherence to a primary strategy of interaction with disability bureaucracies rather than varying approaches. However, these women describe behaviors and emotional explanations of those behaviors, which are found in various aspects of all of the participants' interviews. Like all people, Joy, Jackie, and Maya exhibit variations and contradictions in behaviors that create ambiguity in analysis; nevertheless, their narrative emphasis on one of these postures indicates a clear presentation of ideal types. By closely examining the interactions of these three women as ideal types, nuances of their struggles and strategies become more evident, particularly when juxtaposed with systemic expectations of low income mothers' parental involvement.
Despite the benefits, case studies raise important methodological questions, notably in regard to replicability and generalization (Chen 1999). Clearly, this small sample study is not designed to be representative; these cases may, however, help to refine concepts surrounding parental involvement, contributing to formulation of testable hypotheses in future work. In addition, these three distinct cases of low income women, who are heavily involved in child development activities, indicate something greater than the unique situation of an outlier. Instead, the cases contest conventional theories on low income mothers' parental involvement and yield subjugated knowledge of working class women who are intensely and strategically involved in the development of their children with disabilities.
STRATEGIC INTERACTION WITH EDUCATIONAL BUREAUCRACIES
The mothers interviewed for this study demonstrated three postures of parental interaction with educational systems, which defied class expectations: (1) the warrior-hero battling against bureaucrats to obtain resources, (2) the surrogate advocate serving as an educational decision-maker in place of parental presence at school, and (3) the disengaged parent removing herself from the adversarial educational system and positioning herself as a home-based support for her children. Most of the mothers interviewed for the larger study described behaviors from two or even all of the categories. For example, a mother could fiercely advocate for evaluative services, seek out an educational advocate to support the development of an individual education plan (IEP) in place of maternal advocacy, and then disengage from her child's progress meetings and clinical observations throughout the school year. Three of the mothers, however, tended toward sustained behavior within one of the typologies and serve as subjects for the following case studies.
Many studies describe the exhaustive efforts of affluent mothers battling social systems to attain resources and supports for their children with developmental disabilities, often identifying these mothers with militant labels such as "warrior-heroes" and "vigilantes" (Sousa 2011; Blum 2009, Landsman 2009, and Hays 1996). These same studies challenge intensive mothering ideals as elitist constructions of upper-middle class parents and caution against the impact of such ideologies on low income women. Yet, the working class women interviewed in this study offer extensive examples of warrior prowess as they advocate within bureaucratic systems using the dominant, middle class mothering ideology. One mother, in particular, epitomizes the approach.
Joy is a conventionally attractive, white, stay-at-home mother with long blonde hair that she tousles frequently during conversation. She talks fast and rarely takes a breath for air when speaking about her eldest child, Conner, who was born with an atypical genetic makeup that caused facial deformities, brain malformation, club feet, mental retardation, and other significant impairments. Joy's husband is self-employed and supports a family of six on an annual income of $28,000. Joy and her family live in a single family house in suburb of New Hampshire's largest city.
During our first conversation around her kitchen table, Joy speaks for nearly an hour about Conner before being asked a single question. Her narrative about Conner's complicated medical history is well rehearsed. She recounts how her son was fed through a G-tube, had a tracheotomy, and was unable to walk, speak, or use the restroom up until his death last year. She uses genetic terminology like "cerotype," "transposed chromosomes," "break points," and "de novo" effortlessly as though they are part of common, colloquial conversation. Likewise, she demonstrates relative command of other professional disciplines. For example, in the 20 years of Conner's life, Joy filed due process complaints against her local school district and won; flew her son to Philadelphia and Tennessee for rare and highly controversial surgeries against medical advice; and was appointed to the state advisory committee on special education.
Yet, when asked about how she acquired the vociferous advocacy skills she wields for her son, Joy is often lost for an explanation. She simply "knew" that she had to take on the role of the warrior-hero, relying on her own strong intellect to "fight" social systems and obtain medical and educational resources for her son. Joy believes that this advocacy is her mission in life, referring to it as an unanticipated "career" with only a high school diploma and on-the-job training. After probing, she attributes her advocacy success to an innate ability to communicate in a knowledgeable and professional manner:
If somebody will say something to me, like doctors, and the words they say, I can learn it and repeat it back and understand what they're saying. If you can repeat back to them what they say in the way they say it, even if it's not medical language, it's just the way they talk, then you will be up a step and communicate better.
Joy's perception of professional communication is decidedly positivist, in which subjective and emotionally charged opinions are deemed unsuitable for public consumption. This approach to emotional expression is the result of an "epiphany" that occurred when her son was in the neo-natal intensive care unit. Shortly after giving birth, Joy was told that Conner was "grossly deformed" and "unlikely to live." Upon hearing the news, Joy cried; but then she saw a doctor's face. She perceived his expression to be one of "disgust" with her emotional state:
I don't know if it was imagined, or if it was real, or just my interpretation of his look, but it looked like contempt. Like, 'Oh my God, you're so pathetic,' you know, 'get a grip.' And that, I can remember clear as day as though I was still in that hospital bed. I had an epiphany. I said, 'God if I ever do this again it is not going to help him. I will never cry in front of anyone ever, ever, ever. For him, for [Conner].' It was an actual epiphany moment when I said to myself, 'No one else is going to fight for him.'
At that moment, Joy made a "pact" with herself that she would never cry in front of a professional again. It was her job to protect and advocate for her son and "crying doesn't work." Instead, Joy's "emotionality was superseded by….resistance" (Todd and Jones 2003). She went to work for her son seeking out every available service and support to help him live a healthy, happy life. With no savings or personal income, Joy developed a patchwork of public funding, private grants, and pro bono services, which she spent up to 40 hours per week filing and managing. Family contributions and a heap of credit card debt made up the difference. Meanwhile, Joy managed her son's medical conditions relying on instinct and training she acquired through an emergency medical technician licensing program.
Conner's life was "a crash course in advocacy" and "social services was totally useless." If she "had enough money" Joy would buy him all of the technology, wheelchairs, and speech equipment he needed; but without the money, she had to "push hard" to get what was needed. "People would think I was crazy…I was constantly writing letters and complaining about something." She even carried around "fire cards" to discontinue professional services she deemed unresponsive. If professionals said "no" to something Joy requested, she would stage a sit-in:
I finally said, 'If you don't give us a consultation, I'm going to come down there and sit in your office every day.' Not that I was making threats. I just, 'I'm going to sit there. And it's going to be really miserable because [Conner] has to be suctioned, and changed, and I've got to give him his food through a tube and it's going to be a scene.'
In reflecting upon her success, Joy is clear that she learned advocacy "the hard way". She opines that social systems, schools in particular, tend not to initiate "big ticket items" for students. But, Joy always wanted "big computers and major things," which ultimately she received. She credits this success to her stamina; she would keep pressing forward, writing letters, and fighting with leaders until they got "tired of coming to the meetings."
This kind of sustained advocacy effort is generally associated with upper and middle class mothers who have access to cultural and material resources as well as time. Yet, Joy was able to fulfill elevated parenting standards associated with the warrior-hero cultural construct (Sousa 2011) on a limited income, with the support of a stable, two parent household in a homogenous suburb. While many of the mothers interviewed in this study exhibited persuasive advocacy skills and a desire to "fight" for what is needed, few were able to maintain such efforts over a long duration as Joy describes.
Professional advocates are becoming commonplace in educational settings (Rosenbaum 2005). Generally, advocates are expected to have an understanding of the processes of the professional setting as well as the particular needs of the child for whom services are being directed. The advocate then works with parents to obtain the best possible systemic outcome that serves the child's needs. Yet, advocacy services do not necessarily involve a professional relationship. Family members and friends can serve as supports for mothers as well as sources of information. Several of the interview participants affirmed the importance of maternal grandparents and extended kinship networks as integral sources of advocacy, care, and financing for grandchildren with developmental disabilities. For Jackie's family, grandparent support extends well beyond casual involvement. Jackie's mother, Sandra, functions as a surrogate educational advocate for her grandson at Jackie's request.
Jackie is a biracial employee of a retail chain store who adorns her short, sturdy frame with bold, colorful accessories and a natural afro. She frequently talks about her son's athletic prowess with pride and only sporadically mentions his difficulties with reading, writing, and speaking, which are considerable. Diagnosed with pervasive developmental delay, Jackie's son, Sam, is unable to have a meaningful conversation with those outside of his immediate family and "has never had an actual friend." At age nine, Sam is beginning to develop pre-reading skills at the kindergarten level. Jackie is a single mother supporting a family of three on an annual income of $22,000 without any physical or financial assistance from her children's father. Jackie and her two children live in an apartment in an urban area of New Hampshire walking distance from her childhood home.
Over the course of six informal meetings, Jackie remains ambivalent about educational programming for her son. At times, she is complimentary, indicating that her son is receiving exceptional speech and occupational therapy services through the school district. Yet only moments later, Jackie's manner is best described as exasperated as she repudiates the special education system, punctuating her remarks with heavy sighs and vigorous hand gestures. She confesses that she "just can't deal with these people" because she "loses it." When urged to define "losing it," Jackie says she gets "worked up" and "too defensive," which limits her ability to process the information being provided at Sam's IEP meetings. According to Jackie, special educators talk about her son as though he is a list of deficits rather than "a human being" and she is unwilling to tolerate their demeanor: "I just can't sit there and listen to them." "Besides," she says, "when I go in there with my big hair and bling, they don't listen to me, anyway."
Instead, Jackie designated her mother, Sandra, as an educational surrogate for Sam. Sandra attends evaluations, medical appointments, and IEP meetings making decisions for Sam in place of Jackie. "My mom makes great decisions under pressure." She goes on to say,
Not to put myself down or anything, but, I just don't have…that kind of knowledge. I can't help my son in those meetings. My mother does it better because she doesn't take it personal.
But, Jackie does not abdicate parenting responsibilities to her mother. At home, Jackie and Sandra discuss the school district's proposals, research terminology online, and "make pro-con lists." Ultimately, Jackie says, Sandra's instincts are "99 percent right;" but, they go through the process of decision-making together and Sandra conveys the result to the school district in "a way they can understand, you know, with their fancy cars and fanny packs."
The subtext of Jackie's comments reveals tension between the middle class, white professionals who provide educational services for Sam and Jackie's working class, African American heritage. But, Jackie explains her absence from academic meetings in terms of emotional control rather than race or class. After all, she sees the same "coifed," "fanny-pack-wearing" mothers and teachers at Sam's soccer games. She can "handle them" in that context. But, when making decisions about Sam's future, she "just can't keep it together."
For Jackie, an educational surrogate is a strategic tool to help her become more involved in the educational process. Professional advocacy services of this nature are available in New Hampshire with hefty price tags. Sandra's services are not only free, but she is trusted as well. Her presence at the meetings allows Jackie the opportunity to have a spokesperson for Sam and the family during decision-making meetings, meanwhile, Jackie is able to think clearly and critically about the proposals in an environment that does not inflame her passions or anxieties.
Despite this effort to calm her nerves, Jackie frequently becomes "irritated" by comments on the soccer field. Teachers often "whisper" and occasionally confront her with comments such as, "If you only spent more time with your son, he'd be better." Jackie is incredulous:
What does she mean, 'if I spent more time with him?' I'm his mother; like, I'm not involved?!? Who makes his bed, drives him to 13 practices a week — soccer, basketball, swimming, camp? [Sighs and shakes her head.] Does she buy his Nikes? Who picks the dirt and grass out of his nappy hair [after soccer practice]? …He kicks and bites. He won't to go to bed… Where's the damn teacher then?
Sam's teachers have very little contact with Jackie off of the athletic field and, thus, no reference for her dedication to parenting. Instead, they rely upon cultural perceptions of parental involvement and, by extension, grandparental involvement to form opinions about Jackie's family life.
Significant scholarly attention has been focused on custodial grandparents serving as primary caretakers of grandchildren in the absence of parents and as supports for adolescent parents (i.e. Burton 1992; Kelly 1993; Dowdell 1995; Henderson and Cook 2005). This myopic view of grandparents' custodial role in kinship care is reinforced in black families by racialized perceptions of drug addition, domestic violence, and child maltreatment (Roberts 2002; Fluke, et al. 2003). However, the majority of US households that include both a grandparent and a grandchild under the age of 18 also include at least one of the grandchild's parents (Casper and Bryons 1998; Pruchno 1999). Grandparents are commonly recruited to perform routine care for grandchildren with disabilities (Green 2001), including tasks such as respite care, transportation, and attendance at therapy sessions. In addition, grandparents can serve as a source of significant emotional support for parents raising children with intellectual disabilities leading to lower rates of maternal depression (Heller et al. 2000) and parental stress (Trute 2003).
Despite the positive impacts of grandparental involvement, lingering cultural bias may lead many to misconstrue Sandra's presence at Sam's IEP meetings as a surrogacy of last resort rather than as a strategic support for school-based familial involvement used to reinforce Jackie's home-based educational efforts for her son's development. While Jackie finds herself frustrated by the misperception, she believes herself unable to manage her emotions in a manner that would adequately convey her investment in Sam's future.
Professional expectations of low income parents' lack of involvement with school officials are derived from plentiful data; yet, few scholars have considered disengagement from educational systems as a strategic means to support positive child development (Cassiman 2011). Instead, the "uninvolved" label is often applied without context beyond the schoolhouse doors. However, several of the working class mothers interviewed for this study demonstrate that disengagement from formal systems does not necessarily equate to antipathy toward child development activities. Maya, in particular, exhibits highly concerted efforts to advocate for her son's well-being outside of the boundaries of formal education.
Maya is a petite, unassuming woman who emigrated from Latin America eight years ago. She speaks fluent English woven with incisive political references. Maya's son, Frank, was born in the United States and was diagnosed with autism six years ago at the age of two. Frank is "nonverbal," communicating through gestures and emotional expressions and is prone to agitation, which can keep him "awake screaming for days" on end. Maya quit her low wage job shortly after Frank was born, but recently returned to part-time work after separating from her husband. Maya lives in a rented multifamily unit in a New Hampshire suburb. Maya and her estranged husband support a family of five on an annual income of $25,000.
Maya cries quietly throughout the interviews, expressing her deep sorrow over her "failure" to obtain the services Frank needs to be successful at school. Frank was only one year old when Maya first noticed signs of atypical development. The pediatrician rebuffed Maya's observations of Frank's withdrawal and lack of communication as being "normal" and similar to her family's reserved disposition. By the time Frank was nearly two, Maya was concerned deeply about his lack of communication and lack of interest in family members. She got Frank on a waiting list to see a pediatric neurologist for a second opinion, but was unwilling to wait a year to see the physician. Maya and Frank flew back to their country of origin where Frank was "diagnosed with autism five minutes after meeting the neurologist." Upon returning to the United States, Maya was told that Frank was about to "age-out" of early intervention; he would start school instead.
Maya's first experiences with special education were positive—and short lived. Within nine months, Frank was moved to a different school for more intensive programming. She recalls that there was tension among the IEP team members:
So as soon as Mrs. "X" came on board they'd start like a fight. It would be like a tug of war because she would point out to us what the school was doing wrong and then the school didn't like that. I was always trying. I felt like I was Jimmy Carter, always trying to negotiate peace between them. It was very hard, very hard. But, it's not like I could fire the whole team… I had no choice but to negotiate.
Maya feels like her son lost out because of these battles. She used to drive by the school to check on her son until she found that the school staff was not abiding by the agreements made in the IEP meeting. Maya, like many other disenfranchised mothers, now feels as though her contributions to Frank's education are devalued or ignored entirely by educational systems (Turnbull and Turnbull 1997; Sanchez 1999; Shapiro, et al. 2003). As a result, Maya stopped interacting with school officials beyond signing the annual IEP, which she perceives as a meaningless document.
Instead, Maya spends her time focusing on non-traditional methods of supporting her son, such as swimming and visits to the animal farm to calm his nerves and encourage him to talk. She wishes that she could "find a way for [educators] to work together for the good of the child;" but she "didn't succeed." "At that point, I was so stressed; I had given up and gone with emotion." When pressed about what happens when she "goes with emotion," Maya responds, "I think they pretend to listen to you but they don't act on that….nothing changed."
After two years of not communicating with public school educators, Maya removed Frank from school mid-year and sent him to live in Latin America with his father and extended family. She believes that the warm climate, supportive family network, and naturally gluten free diet will help Frank to relax, sleep better, and make more social connections; but, he will not attend school as it is summer there.
Meanwhile, Maya reads books about autism, attends a parent support group, and recently completed advocacy training for parents. But, she does not believe these things will help her son receive better services in the school district should Frank return to the United States. "They just don't listen to me…I don't know if it's like that for you, being from here, but, for me, maybe they don't understand me." When told that her English is not only intelligible, but beautifully spoken, Maya responds, "I'm constantly at the library, reading and working on my English. I think that, like, if I speak better, they will hear what I am saying and help my son." But, Maya is not willing to talk with school officials just yet. She will "figure that out when the time comes."
Assignment of the "uninvolved" label carries a stigma and is determined by professional institutions, not by direct observation of parent-child interactions, parental time management, or extended advocacy efforts within informal settings. Like the warrior-hero mothers, Maya expends exhaustive efforts to help her son communicate and develop; however, Maya's activities are no longer within the context of a formal educational environment. Rather than take an uncomfortable confrontational or adversarial posture on behalf of her educationally neglected child (Shapiro, et al. 2003), Maya redirects her energy to home-based endeavors that emphasize Frank's "health," "happiness," "fulfillment," and "independence." "My son is my life," she says. "If he's happy, I'm happy."
FEELING OUT THE SYSTEM: SPECIAL EDUCATION BUREAUCRACIES AND EMOTION MANAGEMENT
The conflict between mothers' views of their children's needs and professional assessments of student weakness elicits powerful emotions in mothers. These intense "expressions of positive and negative affect" evolve from momentary expressions of feeling, to "long-lasting sentiments" for other actors, and ultimately, become the foundation for social structures "and associated performance expectations" (Shelly 2004:141-2). In this manner, emotions may be elicited through an interaction; but, only certain emotions may be displayed according to the role expectations of the educational system. In such circumstances, emotion norms or "feeling rules" must be respected, necessitating individuals to craft means of emotion management to conceal internal discrepancies between personal feelings and the rules of expression (Hochschild 1979, 1983). Those who fail to negotiate this process adeptly or who demonstrate extreme emotions will endure social reprisals (Denzin 1985; Koole 2009).
Even with substantially different cultural backgrounds, Joy, Jackie, and Maya interpret the feeling rules of special education interactions similarly as social exchanges: mothers must exhibit appropriate parental demeanor in exchange for special education services. In their estimation, parents are expected to be "good" participants in the educational process by attending meetings, carrying out the recommendations of professionals, and "playing nice." Parent-initiated goals for children should be prioritized only if the educational "team" agrees to the importance of such activities. Disagreement with a method or discomfort with a staff member may be indicative of a parent's ignorance rather than concern:
Like, my son is still nonverbal. And, I think he desperately lacks speech [services]. He only had like two thirty minute sessions per week. And the way…the day I went to observe and he was just not happy. The way they were doing it wasn't right. And I tried to suggest and they said I had no background, no knowledge to suggest.
Furthermore, disagreement is perceived as inappropriate parental behavior subject to punitive action, such as refusal to abide by previous agreements for service. When Maya kept "pushing" for more speech services, she found her son isolated from Frank's educational team. He was bounced around to new speech pathologists whose tolerance for Maya's questions quickly waned. Maya became distraught and pulled back her involvement from school. She worried that if she applied too much force, Frank would "get worse." Now she cries over her "failure" to get what Frank needs.
Joy, on the other hand, moved full steam ahead against opposition knowing well that she was perceived as being "too aggressive" by professionals:
They would say to me, "Joy, we don't know what you want." And I'd say, "This is what I want: I want somebody at this table to tell me something I don't already know. That's what I want." And then there was silence. I already know he had difficulty communicating because he didn't have a voice box. And I already knew he couldn't walk because he was in a wheelchair. So they would go through all of this and, um, the goals had been on there for two years. I would say, "I need someone in this room to come up with something else, to try something different. Not to just say what we already know." And that would be aggravating for them.
Joy is often credited with being a "pit bull" as parents laud and professionals fear her tenacity. Her advocacy efforts are praised by fellow mothers and highlighted by parental advocacy groups. She was even nominated to sit on the state's parent advisory board. But Joy paid a price within the school system for her refusal to comply with unofficial standards of parental behavior. Joy describes intense retaliation after winning a due process legal claim against her son's school:
…at the mediation table the school started going after me. The mediator separated the parties. He said for the record that the school is extremely offensive and completely out of line by making this about the mother with the son sitting right there. It's not going to happen… Their lawyer was just as obnoxious. We won everything…I remember bringing [Conner] to school after that and his teacher said to me, "Try and make us do it." [She said] to my face: "There's no court around here."
Joy was perceived as "greedy" by some educators who believed the services she won for her son were "luxuries" to which she and her son were not entitled. Like Maya, Joy made a calculated decision to retreat, albeit temporarily, from her involvement with the school. Her disengagement was brought on by "anger" over the audacity of Conner's teachers:
I pulled him out of school. He had nurses and started a home school program. I said, "They're never going to do it [abide by the court ruling] or they're going to take so long that he'll be 19 by the time they start." I made them perform all his secondary services at home…because I wanted to know if they were showing up. I have never been so angry.
Conner's doctor agreed to the homeschooling plan and drafted a letter of medical necessity for home-based, educational services. At that moment, Joy needed a break from the "anxiety" and Conner's doctor was willing to give her one. "I couldn't even look at them," she says. Eventually, Conner went back to school and Joy regained her momentum. She was at school advocating for a new assistive communication device the night before Conner died.
These mothers have found that they cannot always abide by the rules, nor is complete compliance desirable. Yet educational bureaucracies hold considerable power over them as services for children with disabilities are within the control of bureaucrats not mothers. For Jackie, this power means that the rules must be followed by someone who can "handle the situation" rather than someone "like me" who gets "wound up." Even as she talks about the special education process, her breath quickens and her voice is raised to the point of yelling: "I need my mother to do this. It's just not an option. [Sam] depends on these services…he depends on me to be cool. [sighing] I just can't…" There is a clear logic to Jackie's approach to interaction with educational bureaucracies; yet, she is aware that her distance comes at a price. To bureaucrats, Jackie is an uninvolved mother rather than a concerned parent abiding by the feeling rules of the institution as she understands them.
DISCUSSION: CONFLICTING EMOTIONS AND EDUCATIONAL BUREAUCRACIES
Special education is governed extensively by law and regulation; however, any consideration of these edicts must take seriously the subjective experiences of the system's consumers. Every aspect of families' lives is subject to formal and informal surveillance of special education systems and judgments are made to support requests for increased services at great costs to the bureaucracy (Lipsky 1980; Cassiman 2011). A mother's inability to maintain performance expectations, coupled with inequalities in income, race, language, and education, can yield passive determinations about the worthiness of both mother and child for enhanced services. It is not surprising, then, that low income mothers conceal both ideas and emotions from educational bureaucrats (Ridgeway and Johnson 1990; Cassiman 2011) and sometimes disengage from interaction entirely.
At the same time, public rhetoric about parents being their children's best advocates has permeated cultural notions of parenting children with special needs, inspiring legions of books, blogs, and advertisements heralding the virtues of strident and confrontational advocacy (Sousa 2011). According to the precept, mothers must act with intensity and seek out every resource aggressively to mitigate the impact of disability on children. These concentrated advocacy efforts not only contrast with bureaucratic expectations of low income mothers' compliance with institutional mandates, they also conflict with traditional expectations of mothers to be inwardly focused and perform household "emotion work," giving comfort, care, and support to children (Hochschild 1979, DeVault 1999). The result is role confusion for mothers attempting to adhere to competing ideologies of mothering, in which the emotionally expressive caregiver, the vigilant advocate, and the compliant service recipient are intended to be integrated seamlessly by a single individual. The strain of discrepant roles is exacerbated further by a lack of material resources and a sense of personal urgency to obtain services for a child with disabilities resulting in an emotionally charged environment.
Despite the mounting odds against low income women advocating for children with disabilities in the educational system, these case studies highlight how conflicting and, sometimes, negative emotions may compel some low income women to create alternative means of interacting with systems that may yield some positive results. During instances in which emotions come bubbling to the surface, creating distance is not a function of "natural development processes;" instead, parental distance from educators is a carefully considered, strategic investment in obtaining better services for children with disabilities, without institutional reprisals for expressing unwanted emotions. Educational surrogacy offered Jackie with an opportunity to access speech services for her son and concomitantly enabled her to focus on physical aspects of her son's development on the soccer field and skills of daily living at home. Maya, on the other hand, separated herself entirely from the school environment and committed herself to home-based efforts supporting her son's emotional development, which was excluded almost entirely from his school programming. Joy, too, practiced situation selection when her frustration and anger emerged, homeschooling her son for nearly a year.
Each of these mothers describes carefully crafted efforts to modify or avoid situations in which scrutiny of maternal affect would impact children's development negatively. Yet, all concede that even after thoughtful and extensive efforts to nurture their children's talents outside of formal educational settings, they remain unhappy with the outcomes of service. They continue to want more from educational institutions to support their children with disabilities, which, again amplifies the emotional impact of interacting with special education bureaucracies. The result is continued antipathy for educational systems that undermine these low income mothers' efforts to cultivate their children's development.
The sociology of emotion and the psychology of affect management examine the reciprocal relationship between emotion and self-identity with particular emphasis on how individuals' affective responses differ from emotion norms and the resultant labeling processes (Stryker 2004; Koole 2009). Likewise, at the heart of the parental involvement debate is the assignment of "good parent" label on those who participate fully in sanctioned child-development activities within educational bureaucracies and who are rewarded with praise and the promise of positive child outcomes. These intersecting fields of study elucidate varying forms of labeling theory; yet often, theorists assume that role negotiation begins and ends with emotion regulation rather than extending to creative non-compliance with emotion rules to satisfy children's needs.
For Jackie, Joy, and Maya, challenges to emotion regulation and affect management within the context of special education inspire alternative behavior that technically complies with cultural mandates of maternal intensity in many ways but, to some extent, sidesteps engagement with institutions and insulates mothers from emotional reprisals from those institutions. In each case, mothers defy traditional expectations of low income parenting in favor of a high level of engagement in structuring and following through with child development activities. As such, the three women in this case study not only initiate examination of affect management, but, contribute to a more robust picture of strategic parental involvement activities in low income women raising children with developmental disabilities, which has been substantially neglected in the literature.
These case studies also suggest the need to refocus scholarly attention on low income mothers' involvement with educational institutions to include the compensatory strategies working class women use to meet the needs of their children. Critical examination of these strategies may shed light on the role emotional coercion plays in structuring parental participation and limiting viable options for educational goal setting. Finally, this redirection may present opportunities for minimizing structural barriers to accessing mainstream educational services for a broader range of children and families.
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Author note: This research was funded by a fellowship award from Boston College.
- The names of the interview participants and children have been changed to
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- While the terminology of parental involvement may appear to be constructed as gender
neutral, women continue to do the majority of household care-giving and
childrearing work (Hochschild and Machung 1989; Home 2002). As such, Fineman
(1995) cautions against using the term "parent" in place of the word
"mother" because proscriptions and
admonishments to parents are often covert instructions to
mothers specifically (Garey and Arendell 1994).
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