Making It Work: The Invisible Work of Mothers in Pursuit of Inclusion in School Settings

Abstract

Inclusive education is at the forefront of transnational policy agendas. Yet, normative, deficit-oriented disability discourses and institutional gaps continue to shape how inclusion is enacted in schools, often displacing extensive and unacknowledged labour onto families, especially mothers. Drawing on feminist theories of invisible work, this article critically examines the everyday labour performed by mothers of disabled children as they navigate inclusive education systems in Alberta, Canada. Situated within a broader collective case study, this analysis asks: What forms of invisible work do mothers undertake in pursuit of inclusion within education systems labelled as inclusive? Semi-structured interviews were conducted with nine mothers of disabled children. Reflexive thematic analysis illuminated four intersecting dimensions of invisible work: (1) working within the system, (2) working to fit the system, (3) crafting system workarounds, and (4) working above and beyond the system. These forms of work reveal how inclusive education systems rely on mothers to bridge the gap between policy rhetoric and lived experiences. Findings illuminate how mothers’ invisible work simultaneously sustains, negotiates, and resists systemic ableism, highlighting the need to recognize and redistribute this work and reimagine inclusion as a shared structural responsibility rather than an individual, maternal pursuit.

1. Introduction

Over the past several decades, global and national education policies have shifted away from segregation and integration towards inclusive education (Armstrong et al. 2012; Bunch 2015; Byrne 2022; Hardy and Woodcock 2024). This shift reflects a growing recognition that inclusive education is a fundamental human right (Byrne 2022; UNESCO 1994, 2020; United Nations 2006). The United Nations Convention on the Rights of Persons with Disabilities, Article 24, states that disabled students have the right to education without discrimination or exclusion from the general education system (United Nations 2006). Based on this right, disabled children are entitled to access an “inclusive, quality and free primary education and secondary education on an equal basis with others in the communities in which they live.” (United Nations 2006, Article 24, sec 2 (b)). Increasingly, international policy commitments now position inclusive education at the forefront of disability inclusion strategies and action plans (Byrne 2022; Government of Canada 2022; United Nations 2019). For example, the Canadian Chamber of Commons recently published a report titled “Including Every Child, Benefitting All: International Disability-Inclusive Education,” outlining key recommendations aimed at transforming and promoting inclusive education within Canada and transnationally (Ehsassi and El-Khoury 2024).

Inclusive education frameworks articulate a vision of shared learning environments where students of all abilities and backgrounds fully participate in learning together (Armstrong et al. 2012; Hardy and Woodcock 2024; Porter and Towell 2017). Realizing this vision depends on collaboration among key stakeholders, including parents, children, peers, educators, and community members. In the Canadian context, these global commitments are interpreted and enacted at the provincial and territorial levels. For example, the province of Alberta’s education policy defines inclusion as “a way of thinking and acting that demonstrates universal acceptance of, and belonging for, all students” (Alberta Education 2013, p. 5). This framing positions inclusion as both a philosophical orientation and a practical commitment to ensuring that all children are valued and supported within their educational communities.

Despite the commitments made by inclusive education policies and practice frameworks, many education systems labelled as inclusive fall short in practice (Agran et al. 2020; Byrne 2022; Graham and Slee 2008; Reeves et al. 2022; Turnbull and Turnbull 2020). Provincial and territorial governance of Canadian inclusive education policies leads to varied interpretations and implementations of inclusion across the country (Bunch 2015; Hardy and Woodcock 2024; Reeves et al. 2022). While inclusion and integration are philosophically different, the two are often conflated (Ainscow and Miles 2008; Artiles et al. 2006). Normative and deficit-oriented constructions of disability continue to shape inclusive education policies and practices (Agran et al. 2020; Byrne 2022; Church et al. 2020; Graham and Slee 2008; Reeves et al. 2022; Slee 2013; Turnbull and Turnbull 2020; Underwood et al. 2020; Whitburn 2017). Standardized assessments, deficit-oriented language, and ableist frameworks embedded in individualized education plans and performance-based classroom expectations reinforce ideals of “able bodies,” “able minds,” and “normal” functioning as benchmarks of success (Boyd et al. 2015; Graham and Slee 2008; Kilinc 2022; Phelan and Ng 2015; Tabatabai 2020). Such practices (re)produce ableist logic that inclusion is contingent on a child’s “approximation of ability” (Tabatabai 2020, p. 115).

Neoliberal austerity and structural inflexibility, combined with insufficient training and staffing, have constrained schools’ capacity to implement inclusive policies and practices (Alberta Teachers’ Association 2021; Lyons et al. 2016; Runswick-Cole and Goodley 2018). Together, structural barriers, including inaccessible spaces, limited time and resources, and poorly defined policy frameworks and discursive barriers such as deficit-based, ableist constructions of disability, shape how inclusion is enacted in schools and create additional, often invisible, labour for mothers striving to make inclusion a reality for their disabled children.

Feminist scholars have long documented the hidden, gendered nature of mothers’ care work. This invisible work (Daniels 1987) refers to forms of labour that are unrecognized and undervalued, and that often occur in the private realm. In the mid-1980s, Smith (1987) wrote about the gendered and invisible nature of mothers’ care work. Soon after, Hochschild and Machung (1989) coined the term “second shift” to describe the experience of working mothers who, after a day of work outside the home, began their “second shift” caring for their families. Several decades later, mothers continue to strive to “do it all” and “have it all” in their career and home lives (Tabatabai 2020). Despite social progress, in Western culture, mothers predominantly remain the primary caregivers within heteronormative families (Chung 2020; Ciciolla and Luthar 2019; Power 2020). Gendered societal expectations and structural inequalities, such as the gender pay gap, shape how care is organized, increasing the likelihood that mothers adjust their daily routines to accommodate family care, often sacrificing income, career advancement, and personal time to coordinate and attend medical appointments, school meetings, field trips, and extracurricular activities for their children (Brewer 2018; Sakaluk et al. 2019; Scott 2018). The rise of the nuclear family has further individualized parenting responsibility, disproportionately assigning care work to mothers and intensifying pressures associated with performing the good mother ideal (Hays 1996; Rich 1986).

For mothers of disabled children, the good mother ideology is inextricably linked to invisible work, both of which are amplified and complicated by ableist systems. Comparisons to developmental norms, the use of standardized assessment tools, and the endorsement of parent- and family-centred interventions and educational policies permeate mothers’ interactions with health professionals, childcare providers, and educators. Mothers perform ongoing emotional, logistical, and advocacy work to ensure their disabled child’s meaningful participation in education and community life at the expense of their own needs, career opportunities, relationships, and health (Balter et al. 2025; Underwood et al. 2020). Research shows that mothers of disabled children with complex developmental or health concerns report higher levels of stress, reduced sleep, and poorer mental health compared to fathers of disabled children or parents of nondisabled children (Balbo and Bolano 2024; Bhatta et al. 2025; Brekke and Alecu 2023).

Mothers of disabled children not only coordinate services across education and healthcare systems, but also synthesize and translate professional knowledge to educators and clinicians, all while navigating the sociocultural politics of inclusion (Balter et al. 2025; Lagosky et al. 2016; Underwood 2008). These mothers acquire specialized expertise in their child’s educational and health needs by necessity, expertise that far exceeds that expected of parents of nondisabled children (Wilkinson et al. 2021; Woodgate et al. 2015). However, mothers’ specialized knowledge is often minimized or dismissed in favour of professional expertise and institutional authority, even when mothers themselves possess parallel expertise in education or healthcare and can bring their lived experiences as both professionals and mothers to their advocacy (Runswick-Cole et al. 2024).

Although inclusion features prominently in education policy, the daily realities of mothers and their disabled children expose how inclusion is sustained by mothers’ unacknowledged labour, revealing a persistent gap between institutional rhetoric and lived experiences. To interrogate this imbalance, the authors draw on feminist theories of invisible work (Daniels 1987; Hatton 2017; Smith 1987) to examine how inclusion is made and maintained through mothers’ everyday hidden labour and the sociocultural conditions that render this work both necessary and invisible.

2. Methodology and Methods

This research extends a branch of inquiry within a broader collective case study (Stake 2006) exploring how disabled children and families experience inclusion and exclusion in schools in Alberta, Canada (Reeves et al. 2022). This design enabled in-depth exploration of multiple cases connected by a shared phenomenon while also recognizing the unique contextual features of each case (Stake 2006). As data collection and analysis progressed, work—often gendered, behind-the-scenes, or unseen—became increasingly salient in mothers’ stories. We recognized this as invisible work (Daniels 1987; Hatton 2017; Smith 1987), a meaningful and under-examined dimension of mothers’ experiences. The iterative and simultaneous processes of data generation, interpretation, and theoretical engagement led to the development of the research question that guided our analysis: What forms of invisible work do mothers undertake in pursuit of inclusion within education systems labelled as inclusive?

2.1. Participants and Data Collection

Ethics approval was obtained from the University of Alberta (REB #Pro00059985). While the broader collective case study included in-depth semi-structured interviews with both disabled children and their mothers (Reeves et al. 2022), the present paper focuses on the mothers’ interviews, which offered detailed accounts of the everyday work involved in pursuing and sustaining inclusion for their disabled children. Nine mothers participated, each the primary caregiver of a school-aged child (Grades 4–12) with a family- or self-identified disability and/or chronic medical condition, who attended or had attended a school labelled as inclusive. Mothers lived within 200 km of a large urban centre in Alberta, Canada, and had sufficient English fluency to participate comfortably in conversation. Pseudonyms were assigned, and all data were de-identified.

Interviews were conducted by one of two trained research assistants in mothers’ homes or other preferred locations (e.g., a local coffee shop). The semi-structured format encouraged mothers to share stories about their own and their disabled children’s pursuit of inclusion in school, experiences of inclusion and exclusion in school, understandings of inclusive education policies and practices, and the social, cultural, structural, and institutional factors shaping these experiences. The interview guide included broad, open-ended questions with probes to support deeper reflection and was iteratively adapted as interviews progressed. All interviews were audio-recorded and transcribed verbatim by a professional transcriptionist.

Reflexive considerations guided the approach to representing demographic information. Consistent with the study’s feminist and relational orientation, mothers’ self-representations determined which contextual information was shared, rather than systematically gathering and reporting specific details such as ethnicity, disability status, immigration status, sexuality, income, and occupation. Despite collecting select demographic details upon intake, these details were noted only when explicitly mentioned by mothers when describing their families—for example, references to multilingual family life, religious or culturally specific schooling contexts, or caregiving and employment arrangements. This approach provided contextual insight into the social and institutional conditions shaping families’ everyday experiences and their efforts to pursue inclusion, while allowing mothers to direct what family-specific information they were comfortable sharing. The following relational biographies introduce the nine mothers who participated in this study and their families. Drawn from mothers’ own accounts, these narratives are presented in lieu of a demographic table to foreground their contexts, relationships, and lived experiences.

Lisa is the mother of three children: Kayleigh, 10, a spirited and determined girl who was diagnosed with cerebral palsy at birth; a curious six-year-old daughter who, at the time, was being assessed for autism; and a lively two-year-old son who keeps the household busy. She and her husband share the daily work of parenting, though much of the coordination and advocacy for Kayleigh’s inclusion in school and community life falls to Lisa. Lisa works outside the home while also navigating extensive care, appointments, and advocacy demands. Over the years, she has become a strong and knowledgeable advocate, pushing back against systems that have excluded Kayleigh through inaccessible classrooms and missed field trips. She has engaged with teachers, school administrators, and provincial inclusive education advocacy organizations to ensure Kayleigh’s right to learn alongside her peers.

Judy participated in the study alongside her 16-year-old daughter, Claire. They share a lively home with Claire’s father, younger sister, and a kitten who often makes an appearance in their stories. Claire is a Grade 10 student who was diagnosed with autism at age three. She is insightful and creative, with a sharp sense of humour and a love of singing. Much of Judy’s time is oriented around supporting Claire’s participation at school and in her social life, communicating with teachers, arranging supports, and encouraging opportunities that help Claire connect with others on her own terms. Judy’s descriptions of family routines and school schedules suggest a carefully coordinated home life that supports Claire’s learning and well-being.

Christine is a stay-at-home mother of her 11-year-old son, Alexander, a Grade 5 student who has received multiple medical and developmental diagnoses, including anxiety, obsessive–compulsive disorder, sensory processing disorder, fibromyalgia, chronic fatigue syndrome, and apraxia. Christine and her husband live with Alexander and Christine’s mother, who moved from another province to help support the family. Previously employed in corporate training and development, Christine draws on her professional background to navigate and advocate within education and healthcare systems. Throughout her interview, she described the extensive coordination required to ensure Alexander’s educational and health needs were understood and met, from navigating multiple physicians and school systems to engaging directly with teachers and school administrators to advocate for inclusive practices. Christine described herself as “a left-leaning Catholic” and reflected on her experiences within a Catholic schooling context.

Breanne is the mother of three boys and stepmother to a daughter who is attending university. She participated in the study with her older sons, Cole and Blake. At the time of the study, Cole was 13 and in Grade 7, diagnosed with attention deficit hyperactivity disorder and obsessive–compulsive disorder, while Blake was 10 and in Grade 5, diagnosed with a chromosome microdeletion and global developmental delays. Breanne described her early introduction to inclusion through Blake’s participation in an inclusive early intervention programme and how this experience reshaped her understanding of advocacy, belonging, and relationships with schools. She took part in parent learning groups and workshops and became deeply engaged in collaborative efforts to support her children’s inclusion.

Ellen participated in the study with her 12-year-old daughter, Danielle, who was in Grade 8 at the time. Danielle has a genetic metabolic disorder that affects her energy levels, mobility, and participation at school. Ellen and her husband also have a six-year-old son who experiences physical disability. The family endured the loss of an infant daughter to the same genetic condition, a reality that shapes Ellen’s deep understanding of care, vigilance, and advocacy. Both Ellen and her husband work outside the home, while her parents provide day-to-day support, often assisting with school transportation and appointments. Ellen’s reflections reveal the continuous coordination and communication required to support Danielle’s education and health, from developing care plans and collaborating with teachers to advocating for accommodations that enable Danielle’s full participation and inclusion in school and extracurricular activities.

Jennifer is the mother of three children, including her 16-year-old son, Mark, who was in Grade 10 at the time of the study. Mark has received multiple diagnoses, including autism, Tourette syndrome, sensory processing disorder, and delayed language processing. Jennifer also has a younger son and daughter, and both she and Mark’s father work outside the home. The family relies on the children’s grandparents for daily support, including transportation and childcare. Concerned about the safety and lack of protection for her children at school, Jennifer chose to homeschool Mark for four years and her other children for two years. Her reflections reveal the care and persistence required to create safe and supportive learning environments, as well as the relational and practical coordination that sustains family life.

Sarah participated in the study with her eight-year-old son, Akhil, who was in Grade 5 at the time. Akhil, identified as twice-exceptional, has a high IQ alongside learning differences, sensory processing disorder, obsessive–compulsive disorder, and anxiety. He is the eldest of two children and shares a close relationship with his six-year-old sister. Sarah and her husband have navigated multiple school changes in search of an environment that recognizes Akhil’s learning and sensory needs. Formerly self-employed, Sarah now focuses full-time on coordinating Akhil’s care and education, describing the daily work of advocating for appropriate supports and maintaining the structured routines that help him thrive. She brings to this work insights from her own experiences balancing linguistic and cultural values; her family is multilingual, and both parents highly value education.

Anne participated in the study with her 14-year-old daughter, Maddie, who was in Grade 9 at the time. Maddie has been diagnosed with muscular dystrophy and receives daily support from her younger brother, who plays an active role in her care. Anne and her husband balance busy work lives: her husband works in the oil and gas industry, and Anne is a self-employed consultant. In addition to her professional work, Anne serves as chair of the parent council at Maddie’s school, where she shapes inclusive practices and accessibility initiatives. Her reflections highlight the interconnectedness of family, school, and community life, as well as the ongoing collaboration required to ensure Maddie’s meaningful participation and inclusion at school and beyond.

Joan participated in the study with her 11-year-old son, Oliver, who was in Grade 5 at the time. Oliver has received diagnoses of autism and Tourette syndrome and has attended the same inclusive elementary school since kindergarten. Joan works full-time in the education sector and has arranged for Oliver’s care through an after-school programme that he has attended since infancy. She described Oliver as outgoing, confident, and creative; qualities that shine through in his love of music, performing, and sharing jokes with his peers. Joan reflected on the importance of communication and collaboration between families and schools, emphasizing that inclusion works best when relationships are grounded in mutual respect and understanding. Her experiences convey a practical and relational approach to advocacy, balancing her professional insight as an educator with her everyday experience as a parent committed to sustaining her son’s inclusion and well-being.

2.2. Data Analysis

Data were analyzed using reflexive thematic analysis (Braun and Clarke 2022), drawing on invisible work as a sensitizing concept (Blumer 1954) to explore patterns and meanings within and across mothers’ accounts. Dedoose data analysis software was used to support a flexible yet rigorous process of semantic and latent coding to organize and interpret data while attending to the complexities of mothers’ experiences. Specific instances of invisible work were identified and annotated within each transcript. These instances were then visually organized using concept maps to capture patterns within each case. Concept maps were compared to address key analytic questions: (1) What types of invisible work did mothers engage in? (2) When do mothers engage in this work? (3) Who is involved in the work? (4) How do mothers engage in this work? (5) Why is this work necessary? and (6) What are the effects of this work? A concept table was developed to facilitate case comparisons and theme generation. Themes were refined through iterative cycles of coding, mapping, and team dialogue.

Throughout the analytic process, reflexive dialogue sessions were held among members of the interdisciplinary research team, which included representation from speech-language pathology, occupational therapy, social work, and education. Team members drew on both their professional expertise and their lived experiences related to disability, inclusive education, and motherhood. These discussions deepened analytic reflexivity and supported an interpretive reading of how broader sociocultural and institutional forces shape mothers’ invisible work.

3. Results

When navigating school settings that failed to meet inclusion commitments, mothers of disabled children engaged in invisible, unrecognized, and unpaid work in the following ways: (1) working within the system, (2) working to fit the system, (3) crafting system workarounds, and (4) working above and beyond the system (see Figure 1). In this framework, the system refers to inclusive education systems and the associated health and social service systems that mothers navigated while pursuing inclusion for their disabled children. These systems are conceptualized as multilayered and dynamic, shaped by (a) policies developed by government and school-boards, (b) attitudes, values, and beliefs held by principals, teachers, teaching assistants, therapists, therapy assistants, parents, and students, and (c) environmental and structural elements such as the accessibility of a playground, access to sensory-considerate spaces, and time available to teaching staff to prepare materials or pursue additional training.

3.1. Working Within the System

When faced with challenges or barriers to their children’s inclusion at school, the mothers first sought ways to work within existing educational contexts and structures. This work required mothers to navigate educational hierarchies, interpret policies, and translate clinical knowledge and lived experiences into school-based practices, often assuming responsibilities that exceeded typical expectations of parental involvement.

For example, mothers described investing significant time and emotional energy into meetings with teachers, principals, and health professionals to develop Individual Programme Plans (IPPs, also known as Individual Education Plans, IEPs), plan transitions, and address incidents that had disrupted inclusion. They coordinated schedules, prepared materials, and collected documentation to “get everyone on the same page”. Many drew on their own expertise, including knowledge of their child, familiarity with clinical recommendations from their child’s health providers, knowledge acquired through their own professional experiences and training, and research they had undertaken to fill any gaps in understanding. Ellen, whose daughter has a life-limiting condition, described the annual effort required to educate staff:

Every year, I create a care plan. I go in, and I talk to…the teachers that she’s going to have...Some are receptive, some are not receptive, which is frustrating on my end…And I can tell you who buys in by just the look on their faces when I’m doing the ‘in-service’ every year. So, I can just tell.

Several mothers acknowledged the pressures teachers face, including large classes, limited resources, and students’ diverse health and learning needs. Yet, they found themselves compensating for those pressures by volunteering their own time and resources, work that was not always welcome. For example, Lisa offered to present information to her daughter Kayleigh’s classmates to foster peer understanding, only to have her offer declined. Lisa explained:

I’d asked to come in so we could have an open discussion with the class, because kids ask questions…about Kayleigh and her surgeries, and her chair, and her, you know, like that she’s not diseased. You know, like that kind of thing…Get rid of the fear, right?…And she said no, because ‘children are generally accepting’.

Advocacy for accommodations and resources was a constant feature of this invisible work. Mothers requested supports such as sensory-considerate spaces, assistive technology, modified workloads, and accessible transportation, but often encountered resistance. Jennifer described multiple requests following the recommendations from her son’s sensory assessment:

We asked, could we put him by the window and just turn off the fluorescents over his desk? They refused to do that. We asked if they could…try to keep the volume of the other kids in the room down? They felt… that was unfair, and it was stifling the other children…We asked if he could…be removed from the room and given a quiet place to…write his tests?…That didn’t happen because they just didn’t have the staff to allow him to go to another room.

Ellen had similar experiences when advocating for assistive technology to reduce her daughter’s muscle spasms associated with writing: “The school has always…shut me down on it.” And Sarah recalled a year-long effort to involve a specialist team despite her frequent requests, “I was begging for all last year…’Hey, can you have the Inclusive Learning Team come and look at him?’…Nobody ever came.” Despite their persistence, mothers described how their efforts were often unacknowledged. Working within the system required a balance of expertise, diplomacy, and endurance, work that was essential to their child’s inclusion but downplayed, ignored, or dismissed by educators or policymakers.

3.2. Working to Fit the System

Beyond engaging formal processes and policies, mothers described a distinct form of invisible work focused on adapting themselves to the cultural, social, and relational expectations of the education system. Working to fit the system required mothers to become adept at reading institutional cues and social codes, managing hierarchies, and modifying their communication and interactions with teachers and school administrators to navigate unequal power relations.

Central to this work was the development of institutional literacy: the ability to read, interpret, and speak the system’s language. Jennifer explained that success often depended on understanding the unspoken codes that shaped administrative interactions:

One of the biggest things in helping the kids be included in classrooms is to empower the parents to know how to talk to administration…There are certain ways you speak to them that they understand better than others…If you…talk to them at their level…they understand you much better...Just going in and saying “it’s not working” and getting mad…it doesn’t help…Then you’re just speaking to them at an emotional level, and they don’t really know how to translate that into something factual.

Mothers also spoke about the transactional nature of relationship-building in school settings. Christine explained:

If you can’t…put yourself on that team, you need to force your way in there…You have to buy the teachers coffee cards…You have to kiss their ass. I know it doesn’t make sense from like a very, you know, basic perception, but if you want…a working relationship… you’re going to get it through these avenues.

These strategies required mothers to balance assertiveness with likability and professionalism with emotion to avoid being perceived as “difficult.” Christine reflected on this tension:

And so, I’ve always approached it that way. Like you buy the secretaries a coffee, everyone in the office is like, “Oh, where’d you get a Starbucks?” So they go, “Alexander’s mom.” And now people know you in a different light, other than just the ‘special needs mom’…You can get tagged as the ‘crazy mom’ so easily, so you have to be very careful how you approach things.

Similarly, Breanne, reflecting on years of advocacy, emphasized relationship management as the key to progress: “Relationships, relationships, relationships. I need them more than they need me. Right, I always tell myself that. That no matter how mad I am at any one teacher or leader in the system, I need them.”

Mothers also described challenges navigating inconsistent attitudes toward inclusion, which often resulted in exclusionary effects. These inconsistencies were particularly evident in how policies were interpreted and applied at the discretion of individual school administrators, educators, or staff members. For example, Ellen recounted how the rigid application of a school policy failed to take into account her daughter’s medical needs:

They have a policy at the school that if you’re leaving for vacation…you’re expected to have everything done when you get back…He [teacher] basically clipped it out of the newsletter and pasted it into the email…But I was like, this is medical, this has nothing to do with that… It had to go to the principal. Last year, she ended up having surgery over finals…and so she did miss two finals, and one of the teachers was like, “Absolutely, it’s fine, don’t worry about it.”…And the other one was like, “No, she’s got to come and do it.”…So, she failed the final.

In this context, working to fit the system required mothers to perform ongoing emotional and relational labour, including managing impressions, suppressing frustration, and aligning themselves with institutional norms. Their success depended less on formal policy or procedures than on their ability to navigate the implicit sociopolitics of inclusion.

3.3. Crafting System Workarounds

To navigate school-specific attitudes and beliefs, financial constraints, and policies and practices that excluded disabled children, mothers described crafting system workarounds. These workarounds emerged when working within and to fit the system failed, requiring mothers to identify alternative routes to legitimacy, funding, and support.

A frequently described workaround involved leveraging diagnostic codes as a form of institutional currency to establish legitimacy and access resources. Mothers described the extensive effort required to obtain diagnostic codes that could unlock access to supports. This work often involved initiating, coordinating, and following up on assessments that schools were unwilling or too under-resourced to pursue. Jennifer described a long and exhausting process to secure recognition for her son’s needs:

In grade two, we finally got him in to see a child psychiatrist...He [psychiatrist] thinks he has Tourette’s, …some suspicion of ADHD, and…anxiety concerns. [We said] there’s still something missing. We took him back twice more to that psychiatrist, and he says… “He has rigidity issues. He has speech and language issues.”… Just calling them ‘issues’...We weren’t satisfied with that, cause there’s no support for him. If it’s just, oh, he has an ‘issue’ with this, there’s no coding, there’s no support, and he desperately needed it...Around about grade four,…we gave up trying to work through the system, and we just pulled him from school.

While coding was often necessary to access services, some mothers expressed discomfort with the labelling and pathologizing processes attached to it. Breanne described her frustration after completing an extensive multidisciplinary assessment:

We did the eight-hour multidisciplinary assessment for autism… They diagnosed him with severe ADHD and mild OCD…I brought him back to the school with that diagnosis, and the principal that year told me that that diagnosis wasn’t going to give what they needed to support him. So, one day Cole came home with…a letter in his backpack from a…privately hired psychologist that said that he has oppositional defiance disorder…I was livid, like, because he had just gone through really good testing… They said, “Don’t worry, Breanne, it’s just a funding letter.” Once he had a diagnosis of ODD…we were in a push against the school…They were just constantly trying to provide examples for why he shouldn’t be in a regular classroom.

Despite completing assessments and obtaining codes, mothers found that resources and accommodations varied widely across schools and individual teachers. The work of navigating these inconsistencies often fell solely to them.

Another common workaround involved what several mothers described as “school shopping.” This process involved researching school programmes, attending tours, and contacting school administrators to identify schools that would best meet their children’s needs. Jennifer shared: “We trolled every special needs website we could get our hands on. We joined every Facebook group…We asked questions. We did research. We looked at service levels in different cities.” Barriers such as zoning restrictions, funding disparities, and outright rejection made these efforts even more difficult. Anne described attempting to enrol her daughter in a mainstream programme after a family move:

I actually called…the week before school…The principal told me, “No, all the special needs kids go to this other school.” And I said, “No, no she’s in the inclusive programme.” And he said, “No, that’s not the way it works.”

When school-level efforts failed, mothers escalated their concerns to higher authorities, including school boards, government representatives, and disability advocacy organizations. Anne explained:

So, I actually had to go to the school board and say, “Listen, this is what the situation is, I can give you her full education history, I can give you all the report cards, all of her IPPs”... We ended up getting the school that we wanted her to go to.

Mothers also leveraged relationships and community networks to bypass institutional barriers. For example, Christine recalled discovering her son’s exclusion from a therapy list and intervening:

They kept saying she [therapist] was coming in, but he was never on the list. And I kind of did my back channels. Like, through relationships. And found out that he wasn’t actually on the list…And so then, when I advocated enough, he made it on the list.

Similarly, Lisa worked around the system by using her insider knowledge as a school bus driver to mobilize resources for equitable access to her child’s neighbourhood school:

They couldn’t provide busing because they didn’t have a wheelchair bus…in this area. I’m like, “That’s garbage cause I have a spot on my bus and I’m in this area”…So, we fought with the school board…and lo and behold, all of a sudden, a bus showed up a few weeks later.

For some mothers, crafting workarounds meant extending advocacy beyond the school system altogether, including joining advocacy groups or engaging directly with policymakers. Breanne described how her growing advocacy experience led her to participate in consultations and meet with government officials:

I’d never even sat on a school board…I wasn’t into politics…I wanted to be a mom…It felt like I was going to have to become a politician to include my kids…A couple of months ago, I met with the Minister of Education with [Provincial Advocacy Organization]…to talk about…inclusive education…I started attending consultations for this pilot that was coming up, and the principal that year signed our school up for the pilot.

These experiences often provided mothers with insider knowledge and influence that proved useful and effective in advancing their advocacy efforts.

Crafting workarounds was time-intensive and emotionally demanding work often undertaken in response to systemic failures. For some families, relocation or homeschooling became the final workaround to protect their child’s well-being when inclusion could not be secured through formal systems or informal workarounds. Jennifer recalled:

After so many years, I’m tired of fighting. I’m tired of constantly coming in and telling [them], “No, this isn’t going to work. You need to actually work with him instead of just throwing him in there and expecting him to do it.”… We sold our house that we’d had for 12 years.

3.4. Working Above and Beyond the System

Beyond navigating, fitting, and working around the education system, mothers also undertook extensive labour that extended above and beyond the system. Unlike earlier forms of work, this labour often reflected the complete displacement of institutional responsibility onto families.

In the absence of clear pathways, mothers often turned to informal networks, such as social media groups, local family connections, and other parents, to identify resources. For example, Sarah joined an “Autism Moms” Facebook group and reported she “was lucky to get help from other moms.” And Breanne connected with another family who had similar difficulties navigating the system:

I connected with a family who has a daughter in a wheelchair and asked them if they’d ever heard of anything. And, lo and behold, they had the same issue entering their community school in kindergarten, and the district bought a [mobility equipment]…It helps a wheelchair climb stairs.

Some mothers extended their work to others, using their accumulated knowledge to support other families navigating similar challenges. Anne explained, “I try to point them [another family] in the right direction…There’s a couple families here in [suburb]…that I’ve tried to help, or said,…this is what’s worked for us.”

Working above and beyond the system also required mothers to source, privately fund, and coordinate services when school-based or publicly funded supports were unavailable or insufficient. Judy described the challenge of locating programmes and information:

Those companies, they hold their information close… I just wanted them to say, here’s what’s available to you…Nobody would do that…It’s me just trying to research some stuff. But even then, I always felt like I was coming up short…cause I didn’t know what I was looking for…Type in “What services are available for a kid with autism in [Province B]?” and…it just doesn’t work.

Mothers frequently paid for private occupational therapy, physiotherapy, speech-language therapy, behavioural therapy, tutoring, or educational supports. Christine explained: “I even paid for our private therapist…because it was cheaper for them to use therapists that already knew Alexander…They could just come in and give strategies and leave.” Others hired tutors or literacy coaches to address their child’s learning needs and gaps in educational supports. For example, Joan sought additional literacy support for her son, who was struggling to read: “I ended up hiring…a private literacy coach for him…He went from not reading at all…to reading chapter books.” Mothers also described how they went above and beyond the system by taking on the role of educator or therapist at home, spending evenings coordinating between professionals, implementing home therapy programmes, and spending evenings tutoring their children. The mothers viewed these efforts not as optional but as essential to sustaining their child’s progress in systems that offered incomplete or inconsistent support. Some mothers also enrolled in parent education programmes to better support these roles at home. Breanne described how one programme transformed her approach:

I took a programme through the [local inclusion programme]…where I learned how to communicate with him through play and understand him. That really deepened our relationship and my understanding of how to advocate for his needs.

When adaptive equipment or technology was unavailable through schools, some mothers purchased their own. Christine reflected:

We bought him a modified chair, we bought him a laptop, and an iPad. Like everything that they could need, we will provide in order to make it easier. I’m not going to fight with the school to buy him an adapted chair; they’re not going to do it [laughs].

However, institutional policies sometimes prevented children from using such equipment outside of school, over the summer, or between academic years. Anne described purchasing a laptop for Maddie to support her learning at school, only to discover that copyright restrictions prevented her from accessing required educational materials on her own device. Compatibility requirements or changing needs as the child transitioned to a new grade or school often necessitated replacing or upgrading technology, including laptops and software. Anne explained, “Then it was, oh, she needs another laptop. Okay, we’ll purchase her one…Then we weren’t allowed to take it with us when she left.” The financial strain of supplementing school services was a compounding factor. Ellen described the difficult trade-offs her family faced:

So, we have paid for some stuff out of pocket, but it gets really expensive…really fast…And there’s just a certain point where you just can’t pay for it anymore. And you feel horrible, cause I mean, I would do everything that I could for my kids…But unfortunately, like, Danielle’s medications, and [my son’s] supplies, and her supplies, they come first before being able to understand everything that my six-year-old says, or whatever…You have to prioritize.

Working above and beyond the system, mothers assumed responsibilities typically held by educators, therapists, and school administrators to compensate for the systemic shortcomings in school settings. In some cases, the expectations to go above and beyond originated directly from school representatives. Mothers described being asked to volunteer in classrooms or accompany field trips to ensure their child’s inclusion. Lisa recalled a school trip where her sister volunteered to make her daughter’s participation possible: “My sister went with them. And she actually carried Kayleigh throughout the entire field trip, just so she could go.” Others described being asked to assume institutional responsibilities in ways that enabled school staff to manage their workloads. For example, Christine described being asked to keep her son home for half a day each week to give his teacher additional time to prepare materials for him: “I looked at the principal and I said, ‘You wouldn’t be asking me that if I wasn’t a stay-at-home mother.’…I’m sorry that doesn’t fly with me.” This work was extensive and ongoing, shaped more by the absence of viable institutional alternatives than by choice. In relying on mothers to fill these gaps, schools effectively displaced responsibility for inclusion from the system to mothers.

4. Discussion

Current enactments of inclusive education continue to fall short of policy commitments, constrained by inadequate definitions, normative assumptions, and insufficient resources. In response to these systemic shortcomings, mothers of disabled children engage in four types of invisible work: (1) work within the system, (2) work to fit the system, (3) crafting system workarounds, and (4) work above and beyond the system. These forms of labour illuminate the systemic inequities embedded in ostensibly inclusive school settings by revealing how systems rely on families, particularly mothers, to bridge the gap between policy rhetoric and lived experiences. Rather than functioning as supportive structures, “inclusive” schools often operate as sites of exclusion (Kilinc 2022; Reeves et al. 2022) and conditionality (Slee 1996), where access to support depends on a child’s ability to meet normative expectations, a parent’s capacity to advocate or maintain relationships with staff, and the availability or willingness of educators to implement inclusive practices. Inclusion thus becomes something to be earned, negotiated, or justified, rather than an unconditional right. The labour of making inclusion work is not structurally enabled or collectively shared but displaced onto mothers, whose unpaid and often invisible efforts uphold systems that claim equity while reproducing ableist and gendered practices.

4.1. From Access to Exclusion: The Conditional Nature of “Inclusion”

For many mothers of disabled children, gaining access to a chosen school represents the first hurdle in realizing the promise of inclusive education (Blackmore et al. 2016). Although inclusion is embedded in educational policy discourses, its enactment in practice often remains conditional and exclusionary (Reeves et al. 2022; Slee 1996). School administrators and programme directors often view accepting a disabled child as a burden or a task for which they are not adequately funded or resourced (Turnbull and Turnbull 2020). These attitudes expose the enduring normative biases and ableist logics that sustain exclusion within school settings that claim to be inclusive.

Mothers in this study both encountered and resisted such discourses. They described overt acts of exclusion, such as a principal stating, “All the special needs kids go to this other school,” or being asked to keep one’s child home for a half day each week to ease the teacher’s workload. Other forms of exclusion were more insidious, such as failing to provide wheelchair-accessible transportation or planning field trips to inaccessible locations without necessary accommodations to enable participation. These practices undermine families’ trust in educators and signal that disabled children are not valued members of their school communities. Confronting, working around, or adapting to fit these conditions created significant emotional labour for mothers. Some moved residences to access different schools or chose homeschooling to ensure their children’s educational and emotional safety. Others joined school councils and engaged in discussions with policymakers. In doing so, mothers became both advocates and architects of their children’s inclusion, often initiating systemic change at the school or district level. Navigating conditional inclusion also required mothers to read and respond to the unspoken rules, hierarchies, and expectations of schooling, labour that extended into the emotional and relational work of fitting the system.

4.2. Navigating Hierarchies and Institutional Expectations

Once children gained access to the education system, mothers described the ongoing work of learning how to navigate complex hierarchies, institutional scripts of conduct, and relationships with the key players involved in their child’s care. Developing positive relationships with teachers and school administrators was often essential to their children’s inclusion, yet doing so demanded emotional labour to ensure they presented themselves calmly and diplomatically in the face of ableist attitudes and practices (Phelan and Ng 2015; Runswick-Cole and Goodley 2018; Underwood 2008). In under-resourced systems, mothers often shoulder the responsibility of determining what the system needs from them to ease the perceived burden of their child’s “disability,” rather than educators and school administrators asking how they might adapt their practices to better include disabled children (Balter et al. 2025; Runswick-Cole and Goodley 2018; Underwood 2008). As Balter et al. (2025) describe, mothers’ advocacy is shaped by classed, gendered, and racialized expectations; mothers must conform to an institutional mould to gain access to resources.

The mothers in this study described the work they engaged in to fit the system, including bringing coffee to front-office staff, volunteering in their child’s classroom as much as possible, presenting “facts” rather than emotion when advocating, and “picking their battles” carefully. Mothers were astutely aware of institutional hierarchies and strategically adjusted their interactions accordingly to advance their children’s inclusion. Some mothers described tension and dissonance they experienced when expected to prioritize teachers’ comfort or needs above their child’s. These relational negotiations reflect deep power imbalances between parents and professionals, in which mothers’ efforts to maintain positive working relationships further expand their invisible workload (Hodge and Runswick-Cole 2017; Runswick-Cole et al. 2024; Woodgate et al. 2015). This constant negotiation of institutional relationships and expectations blurred the boundaries between the roles of the parent and the school. As mothers stretched their roles to fill gaps left by under-resourced systems, the gendered expectations and personal costs of their invisible labour were amplified.

4.3. The Gendered Costs of Making Inclusion Work

When the mothers’ work went above and beyond what schools provided, the ways in which ableist constructions of disability intersect with the moral expectations of the good mother ideal (Hays 1996; Rich 1986) became apparent. Coordinating private therapies, purchasing adaptive equipment, and acting as tutors or support workers, sometimes at the expense of their relationships with their children, were common strategies mothers employed to compensate for systemic shortfalls. Yet these acts of care, framed as maternal responsibility, reinforced the invisibility of mothers’ labour and the social expectation that they alone ensure their child’s success (Balter et al. 2025; Underwood et al. 2020).

When care work is cast as a mother’s moral duty, a child’s development and success become reflections of her competence. Striving to “do it all” to uphold ideals of the “good mother” while engaging in “intensive mothering” (Hays 1996; Rich 1986) further entrenches the invisibility of mothers’ work. When mothers skillfully and seamlessly fill the gaps of an under-resourced system, this essential work remains invisible and taken for granted, obscuring the systemic failures that necessitate them. While the emotional and material costs of this invisible work were considerable, mothers also transformed these experiences into collective resistance, challenging exclusionary practices, building alliances, and envisioning radical inclusion (Phelan and Reeves 2022) as a practice of relational justice and shared responsibility.

4.4. Invisible Work as Resistance

Although the invisible work of navigating systems carried significant personal costs, mothers’ engagement in this work simultaneously challenged, reframed, and resisted the system’s constraints and oppressive forces. Through their interactions with teachers, school administrators, and policymakers, mothers called out exclusionary practices and advocated for systemic change. Their efforts extended beyond individual problem-solving to acts of quiet disruption.

Mothers found solidarity and strength in informal networks of other mothers and advocates. Within these communities, they exchanged knowledge about policies, shared strategies for navigating bureaucracy, and supported one another through experiences of exclusion and “institutional gaslighting” (Runswick-Cole et al. 2024). These relationships not only enhanced their confidence and sense of agency but also transformed private acts of invisible work into collective forms of resistance (Runswick-Cole et al. 2024). This reframing of invisible work as collective resistance positions mothers as critical agents in shaping inclusive education. Their efforts illuminate how resistance can emerge from within systems, often through relational and care-based practices that challenge dominant epistemologies of professionalism and expertise. By making the political dimensions of invisible work visible, we can recognize mothers not as passive recipients of policy but as active co-constructors of inclusive futures.

4.5. Toward Collective and Structural Responsibility

Although situated in a Canadian context, these findings contribute to transnational critiques of inclusive education by illustrating how ableist service logics, rooted in Western ideals of independence, normalization, and individual responsibility, manifest in everyday educational practices. They also demonstrate how mothers’ invisible work becomes a mechanism through which these globalized systems are sustained, negotiated, or resisted at the local level.

Recognizing this invisible work demands more than acknowledgment; it requires a redistribution of responsibility. Inclusive education must be understood not as a set of individual accommodations to be negotiated by families, but as a collective, structural, and justice-oriented commitment embedded across educational, health, social, and policy domains. This shift aligns with the principles of radical inclusion (Phelan and Reeves 2022), a vision that redefines inclusion as the ongoing work of dismantling ableist structures and redistributing relational, material, and epistemic resources. Such a transformation calls for reflexivity among educators, school administrators, health professionals, policymakers, and families to confront how ableist and gendered assumptions shape current policies and practices. By reframing inclusion as a collective and structural responsibility rather than an individual, maternal one, we can begin to repair the inequities that make invisible work necessary. Doing so opens possibilities for systems that value relational expertise, redistribute care, and advance epistemic justice by recognizing mothers and disabled children as legitimate knowers and co-producers of knowledge (Hultman and Hultman 2023; Mladenov and Dimitrova 2022).

5. Limitations and Future Directions

This study evolved from a larger project focused primarily on disabled children’s experiences of inclusion and exclusion in school settings labelled as inclusive, with parent narratives offering complementary insight into family perspectives. Consistent with the study’s feminist and relational orientation, demographic information was not systematically collected or analyzed; instead, it was represented through mothers’ self-descriptions and contextual narratives. This approach privileged how mothers chose to represent themselves and their families, though it limited our ability to examine patterns across intersecting social locations such as race, class, disability, immigration status, or sexuality, to name a few. Future research that attends to the invisible work of mothers, fathers, and children through an explicitly intersectional and relational lens could deepen understanding of how social position shapes experiences of inclusion, exclusion, and epistemic injustice (Fricker 2017). Additionally, an examination of inclusion policies through an invisible work lens, in combination with an exploration of the (invisible) work of educators, school administrators, and health professionals supporting inclusion in school settings, could illuminate how institutional structures distribute or obscure responsibility for inclusion. Such inquiry would help reveal not only who performs invisible work, but why systems are designed to depend on it.

6. Conclusions

This study makes a critical contribution to feminist, childhood disability, and inclusive education scholarship by demonstrating that inclusion in school settings, as it is currently enacted, is structurally dependent on the invisible, gendered labour of mothers. Rather than being upheld as a shared institutional responsibility, inclusion is routinely displaced onto “good” mothers through unpaid advocacy, emotional labour, and epistemic work involving the production, translation, and mobilization of knowledge about their children and the systems they must navigate (Hultman and Hultman 2023; Lagosky et al. 2016; Mladenov and Dimitrova 2022). This invisible work compensates for systemic gaps while simultaneously obscuring institutional shortcomings and reinforcing gendered expectations that mothers will “make it work,” often at significant personal, professional, and relational costs.

Importantly, mothers’ invisible work is not only compensatory but also generative and resistive. Through persistence, strategic navigation of institutional hierarchies, and the cultivation of informal relationships and networks, mothers challenge exclusionary practices and expose the conditional nature of inclusion. Their labour reveals how access to inclusive education is frequently contingent upon families’ capacity to advocate, adapt, and absorb institutional burdens, rather than guaranteed as a human right (Byrne 2022; Kilinc 2022; Kovač and Vaala 2019; UNESCO 1994, 2020; United Nations 2006). At the same time, these acts of resistance illuminate alternative possibilities for inclusion grounded in relational expertise, collective responsibility, and epistemic justice.

By conceptualizing mothers’ efforts as invisible work, this research reframes parental advocacy as a structurally produced phenomenon, illuminating the mechanisms that sustain ableist and gendered systems in inclusive education. Recognizing invisible work as epistemic and relational knowledge that challenges dominant assumptions and redefines who is valued as an expert marks a necessary step toward systemic transformation. Inclusion, therefore, demands the redistribution of not only resources but also responsibility and epistemic authority, affirming mothers and disabled children as co-producers of knowledge within inclusive school settings.