Introduction
Family–school collaborative practice is protected by legislation: the IDEIA identifies parents as equal members of the multidisciplinary team in US schools. Despite this, families of dis/abled children remain peripheral to special education processes even as they are required to demonstrate their support for it (Naraian, 2021). Historically, the discourse of parent involvement defined by IDEIA policy and research has defined parental involvement as the way families are expected to interact with schools and suggests that multilingual families need to be encouraged to participate in their children’s education (Nakagawa, 2000). In practice, the policy takes a mechanical approach that narrows family participation to being responsible and accountable to professionals who dominate the decision-making process (Kalyanpur et al., 2000). This is problematic as it continues to perpetuate a deficit perspective and the focus remains the same, that is, families of dis/abled children need policies and programs that are aimed to improve their life chances. IDEIA policy fails to consider the cultural patterns of families of dis/abled children as they consistently support the developmental and academic goals of their children. From the perspective of multilingual families of dis/abled children, this article examines the structural and systemic barriers multilingual families of dis/abled children experience during family–school encounters. This is imperative as deficit-based conceptualizations of multilingual families of dis/abled children are a form of oppression in that the discourse of parent involvement not only represents families to others, but it can also define families to themselves (Holland et al., 1998). Hence, Latinx mothers’ narratives are highlighted as there is a danger that practices will continue to perpetuate perspectives of parent involvement that disqualify family culture and knowledge and silence the potential strengths and contributions of multilingual families (Lareau & Munoz, 2012).
To reframe the deficit-based discourse of parent involvement, a disability studies (DS) perspective is used to interrogate the medical model of disability, which locates disability within individual bodies and minds, rather than in the interplay between individuals’ impairments and environmental factors that either restrict or provide access (Baglieri & Shapiro, 2017). In this article, Latinx mothers of dis/abled children embrace the social model of disability which positions disability as an inevitably occurring form of human variation and a facet of diversity. Critical attention is given to the cultural, ethnic, and socioeconomic background of families as impacting the ways in which they participate in their children’s education (Cobb, 2014). Their agentive moves reveal Latinx mothers of dis/abled children challenging special education processes that perpetuate the ableism, linguicism, and racism that uphold injustices (García & Ortiz, 2013; Cioè-Peña, 2020). In this regard, multilingual families’ navigations of the special education system are understood as sites of negotiating their identities and the construction of the meaning of disability in an ableist society.
In this article, I deconstruct cultural and institutional discourse to expose family–school encounters as instances when Latinx mothers of dis/abled children experience (un)equal influence. Cultural values of familismo are used as an analytical framework to interrogate the discourse of parent involvement and practices in special education (Valdés, 1996). On the family–school landscape, I show how Latinx mothers of dis/abled children draw on their cultural values of familismo to initiate and sustain ongoing communication with their children and school professionals (Morales-Alexander, 2021). In doing so, Latinx mothers of dis/abled children emerge as authentic partners in their children’s education and provide insight into the visible and invisible ways that multilingual families of dis/abled children contribute to the overall success of their children. Weaving their narratives with critical theories that underscore intersectionality, this article positions this group of mothers as creators of knowledge whose experiences are unique and yet inextricably linked with systems of power and privilege. Their critical raced-gendered epistemologies (Delgado Bernal, 2002) have significance in the ways they challenge common assumptions about the origins, cultures, and experiences of Latinx mothers of dis/abled children and in doing so, they emerge from a social, cultural, and political history that is different from the Eurocentric norm (Garcia & Mireles-Rios, 2020).
Theoretical Framework
A DS lens challenges exclusionary and oppressive practices (Goodley, 2014) to examine the meaning attributed to the disability because this response to disability dis-empowers families through the existence of general and special education (Baglieri & Shapiro, 2017). Further, a disability critical race (DisCrit) framework recognizes the importance of a dual analysis of race and ability within this system that seeks to categorize not only disabled children but also their mothers, and this disproportionately impacts those from culturally and linguistically diverse families (Annamma et al., 2013). An intersectionality framework is used to be fully inclusive of Latinx mothers’ experiences and identities at the crossroads of race, ethnicity, dis/ability, class, and language (Hernández-Saca et al., 2018), while attending to time and space (Clandinin, 2013). In spring 2020, as the boundaries of school and home shifted, the COVID-19 pandemic exposed the importance of sharing the stories of Latinx mothers of dis/abled children as embedded in the political, sociocultural, institutional, familial, and linguistic narratives of the time (Osieja, 2021).
Disability critical race theory is expanded to analyze how cultural identity is shaped for Latinx mothers of dis/abled children, and at the same time, how a cultural identity can challenge socially constructed narratives (Annamma et al., 2022). In doing so, this article examines mothers’ navigations of dis/ability, language, and culture to reach across disciplines, geographies, and temporalities. Latinx mothers of dis/abled children provide a “counter-story set against school practices grounded in deficit and inferiority paradigms” (Souto-Manning & Rabadi-Raol, 2018, 203). Culture is defined as “the form of things that people have in mind; their models for perceiving, relating and otherwise interpreting them” (González, 2006, 33). These researchers endorse the concept of funds of knowledge as based on the premise that people are competent and their knowledge bases, gathered from their life experiences, make them so. Thus, the narratives of Latinx mothers of dis/abled children offer “representations of strength, emancipation, and resistance of those who are at the fringes within U.S. schools” (Hernández-Saca et al., 2018, 305).
I use this approach to examine the meaning given to disability during family–school interactions and special education processes in US schools and to center Latinx mothers’ voices at the intersection of ableism, linguicism and racism. Their voices emerge as personal and unique cultural scripts grounded in familismo and show how these individual cultural identities engage in cultural resistance in relation to school processes. To expand DisCrit theory, this article reveals Latinx mothers’ critical raced-gendered epistemologies to bring new understandings of how the intersection of culture, language, and dis/ability constrains the inclusion of certain children in schools.
Conceptions of Parent Involvement and Participation Within Legislative Policy
The body of scholarship on the discourse of parent involvement promotes the myth of the uninvolved parent by positioning families as not able to play an active role in their child’s education. This widespread belief has been institutionally upheld in school practices imposing family–school relations (Nakagawa, 2000) and then resisted through literature targeted to preservice professionals (Naraian & Schlessinger, 2017). In recent times, families of dis/abled children have offered their lived experiences in participating in special education during the evaluation and planning process (Lalvani, 2015); however, they continuously describe these interactions as negative experiences (Reiman et al., 2010). The prevailing definition of parent involvement rests on families when they are asked to agree to eligibility and placement decisions made by school professionals in special education. Despite changes in professionals’ understandings of the familial experience of having a child with a disability, professionals’ beliefs about parent involvement continue to position family’s interests and concerns against institutional practices (Waitoller & Pazey, 2016) and in contradiction to the Eurocentric norm (Souto-Manning & Rabadi-Raol, 2018), and this renders other forms of parent participation as ignorant or invisible (Lopez & Stoelting, 2010).
Latinx Mothers’ Engagement
While research continues to privilege school-centered conceptions of parent involvement, it has left out attention to culturally appropriate definitions and family-centered practices among culturally and linguistically diverse populations (Cobb, 2014). To disrupt these disparities, recent research explores the experiences of multilingual families of dis/abled children who speak languages other than English to show them as sustaining conversations with school professionals; particularly during special education processes (Kim & Kim, 2017). In this article, I intentionally move away from the term parent involvement and instead use family engagement to describe the practices of Latinx mothers of dis/abled children. The word engagement means a commitment and implies that the person who is engaged is an integral part of the process sustained through acts of care (Pushor, 2010). Notably, research does not frame family engagement as a cultural practice; ignoring the significance and centrality of culture in family’s lives (Doucet & Adair, 2018). Nonetheless, Latinx mothers repeatedly expressed interest and commitment to their children’s success through the transmission of cultural and linguistic values rooted in familismo (Valdés, 1996) in support of their children’s social-emotional and academic development.
Methodology
Recruitment and Setting
This article expands the analysis of the dissertation qualitative study: (Re)framing the discourse of parent involvement: Calling on the Knowledge of Latinx Mothers (Osieja, 2021) It is designed to investigate the meaning Latinx mothers of dis/abled children give to their communication with school professionals during formalized family–school encounters at a high school in an urban public school district. Site selection and sampling began with criterion sampling (Patton, 1990) and study participants were considered only if they identified as having a dis/abled child who attends the high school. Twenty families were invited, and three families agreed to participate. One mother and father were interviewed, and two mothers chose to be interviewed alone and all took place in participants’ homes. Thus, my collaborators were three Latinx mothers of dis/abled children: Meri, Tresa, and Lina (pseudonyms) whose children attend one of the special education programs (Autism class, Inclusion class, Resource Center class) at an urban public high school. The city represents an area with a long tradition of immigrant arrival and cultural transformation.
Participants
The three Latinx mothers of dis/abled children; Meri, Tresa, and Lina (pseudonyms) represent a range of citizenship statuses; Indigenous Mexican and Puerto Rican ancestries, and socioeconomic backgrounds. All women were married and took care of the dis/abled children in the home. Meri shared that she emigrated from Veracruz, Mexico, and left school because her family expected her to work on the farm as their family business. She plans to travel to Mexico to attend to her undocumented citizenship status; however, she and her husband Carlo worry that new regulations around immigration will prohibit her from reentering the United States. Tresa shared that she was from Ponce in Puerto Rico. She has fond memories of time when her maternal grandmother and extended family members lived together in the same residential building. Lina let me know that she emigrated from Azucar de Matamoros, Puebla, Mexico, and how she had to leave her daughter in Mexico for a time while she worked in the US. Now they all live together in their home, where she cares for her two daughters with dis/abilities.
Data Collection and Analysis
Data was gathered using semi-structured interview protocols that were recorded, translated, and transcribed by this bilingual (English–Spanish) researcher and author. Data collection occurred over six months, just before and during the onset of the COVID-19 pandemic. The primary source of data collection and analysis in this study was a four-series interview protocol conducted in Spanish or English (Part 1 – Focused Life History, Part II – Current Life and Familial Experiences and School Interactions, and Part III – Reflections: Past, Present, Future), consisting of questions to explore stories as raw data. I open-coded each of the mothers’ interviews, by using inductive coding measures to examine relationships that emerged from the data as artifacts (i.e., IEP document, student projects) and in-depth conversations with the purpose of searching for words, phrases, and patterns of behavior to gain analytic insight (Bogdan & Biklen, 2007) from the family’s perspectives.
Next, I used narrative inquiry to analyze how participants construct stories and narratives from their own personal experience (Clandinin, 2013). Each case study tells what was learned by inquiring into experiences where a Latinx mother’s “lived stories” crossed with school stories (Clandinin, 2013, 51). I attended closely to the three-dimensional narrative inquiry space and used narrative inquiry as a method and phenomenon to consider temporality (places, things, events), sociality (feelings, desires, hopes), and place (school, home, country). By coming alongside, myself as a researcher and a Latinx mother of a child labeled disabled, together we unpacked stories and the meanings derived from these experiences. At the center, this study allowed a closer look at what a story does – to enable each Latinx mother to become who she is because of her story (Clandinin, 2013).
I build on this narrative inquiry approach and use pláticas (cultural exchanges) as a conversational strategy that reflects Chicana-Latina feminist theories to gather “family and cultural knowledge through the communication of memories and new interpretations” (González, 2001, 647). Latinx mothers of dis/abled children embraced our pláticas grounded in “confianza (trust) and respecto (respect) that comes from the community culture of familalism” (Vásquez et al., 2013, 12) By cultivating trusting relationships with Latinx mothers of dis/abled children, I understood these mothers as collaborators.
Then, I used narrative data analysis to develop an understanding of the meaning participants gave to themselves, to their surroundings, to their lives, and to their lived experiences through storytelling (Kim, 2015). I reviewed transcripts exhaustively and began to attend to actions that took place in a particular setting at a specific time; focused on the events, actions, and happenings put together in a plot. I wanted to understand why and how things happened in the way they did, and why and how the participants acted in a way they did to extract a core story. In doing so, I highlighted the words used by Latinx mothers and used direct quotes as crucial in understanding their perceptions and meanings given to their communication with school professionals. I learned how mother’s tensions were portrayed and how judgments were conceptualized during these encounters. This process allowed for within-case analysis (Merriam, 1998) aiming to keep individual narratives intact. In the next phase, I was able to conduct cross-case analyses and theorize across cases to identify common thematic elements across all research participants, the events they reported and the actions they took (Miles & Huberman, 1994). Data was coded across all three mothers’ data to examine the tensions and connections they experienced during family–school encounters with school professionals around their child’s education.
Finally, this analysis was deductive as key constructs in the literature grounded in the traditional discourse of parent involvement were brought to light as part of accepting or rejecting deficit perspectives that define a multilingual family’s participation in the education of their children. To ensure credibility, I triangulated data by gathering data from multiple families, used multiple data sources (i.e., interviews, field notes, artifacts) and used member checking to ensure that my understanding of interviews was correct (Creswell & Miller, 2000).
Researcher Reflexivity
Data analysis combined reciprocity, vulnerability, and researcher reflexivity as interpretive work mediated by both my experiences and those of each Latinx mothers to reveal their ways of thinking (Fierros & Delgado Bernal, 2016). I drew on my own cultural intuition (Garcia & Delgado Bernal, 2020) to co-create cultural knowledges informed by my Spanish ancestry, language and values grounded in familismo. This means that I drew on my own lived experiences, as a Puerto Rican mother of a child labeled as dis/abled who has navigated special education processes. As a scholar and teacher-educator, my work focuses on disability rights and in advocating for the support needs of dis/abled children. I bring decades of experience in an urban public school district where I worked closely with school professionals in support of children’s academic and social-emotional development. These work and life experiences had a positive effect on the Latinx mothers’ interest in the study over the course of the interviews. Together we were building on community knowledge about the influences that come from the home, grounded in Latinx values of familismo that is shared among Latinx families through various modes of storytelling and scholarship (Vásquez et al., 2013). By uncovering Latinx mothers’ oral histories of navigating special education systems, our pláticas (cultural exchanges) revealed agentive moves and similar paths that others have traveled (González, 2001). During nearly 25 years as a special education professional, I have come to understand these pláticas (cultural exchanges) as moments of critical reflection and liberation from the medicalized special education practices I once promoted.
Findings
The Family–School Landscape: Multilingual Families Challenge School Barriers
This article uncovers the ways Latinx mothers navigate family–school interactions during special education processes within an urban public school district. IDEIA legislation promises a free and appropriate public education for disabled children, access to the least restrictive environment, and specifies the need to engage in collaborative planning and practice. However, research and practice continue to reveal family–school collaboration as obstructed given disparate definitions of disability. From the standpoint of perspectives offered in DS, Latinx mothers of dis/abled children challenged school barriers and institutional beliefs that uphold the medical model of disability, which conceptualizes disability as a problem to be fixed that resides within individuals (Bagleri & Shapiro, 2017). Together deficit perspectives and student underachievement translate into complicated processes in the US educational system – for example, the disproportionate representation of emergent bilinguals in special education (Artiles et al., 2011). The mild to moderate learning disabilities that some bilingual children experience are often medicalized and interpreted as being situated solely within the individual child. Researchers describe that labels often denote “a child who does not ‘fit’ into the existing education system” (Annamma et al., 2013, 496), and linguistic multilingual students labeled with disabilities tend to be placed in more restrictive environments than their white counterparts (Losen & Orfield, 2002).
All Latinx mothers of dis/abled children experienced family–school encounters as sites of unequal influence and believed school professionals made all the decisions about special education eligibility and placement. They wanted professionals to listen to their lived experiences in order to develop a whole portrait of their child, their desires, and needs in school. Similar studies into families’ perceptions of interactions in special education evaluation and planning meetings, highlight common sources of families’ negative feelings are related to the use of professional jargon, power imbalances, and limited knowledge of systemic processes and rights (Cobb, 2014). This tells us that multiple contextual factors impact the experience of multilingual families in schools, particularly when they speak a language other than English because they lack the social and cultural capital needed to participate in ways that schools expect (Trainor, 2010).
Latinx mothers of dis/abled children experience other barriers related to language and race during family–school encounters in schools. Scholarship demonstrates that children who speak a language other than English at home, often identified as English language learners (ELLs) or emergent bilingual children (García et al., 2008) at school have often been portrayed from deficit perspectives that are rooted in, but also promote, underachievement (Martínez-Álvarez, 2017). Such perspectives depict ELLs as arriving to school without the skills needed to learn, or as having the problem of being bilingual. Drawing on DisCrit and Raciolinguistic scholarship, Latinx mothers’ roles were recognized as diminished because they lacked the English proficiency needed to navigate English-only spaces and to support their children’s learning at home (Cioè-Peña, 2020).
Another barrier to family–school collaboration emerged at the intersection of culture, language, and dis/ability. The cultural value of familismo – as feelings of identification, commitment, loyalty, and interdependence – is especially pervasive among Latinx people (Maldonado & DiBello, 2012; Valdés, 1996). Latinx cultures suggest that the entire family assumes responsibility for the development and care of their children. As such, the ideals of the family unit are made central to all family engagement efforts, and it is with these firmly established convictions that Latinx families of dis/abled children hope to engage in special education processes (Morales-Alexander, 2021). For example, when translators were not provided for IEP meetings and other school conferences, Meri and Lina, as immigrant Latinx mothers of dis/abled children experienced school practices as tied to racist and ableist ideology. In our pláticas, Meri contested the use of language describing her child as abnormal and Lina experienced professionals’ actions as discrimination given her race. In response, all Latinx mothers used consejos as nurturing advice (Delgado-Gaitán, 1994) to help their child navigate their self-contained placements as Alec, Natalia, and Delia negatively experienced being separated from their peers. Other research explains immigration policy as tied to racist and ableist ideas which construct immigrant bodies as undesirable (Migliarini & Cioè-Peña, 2022). Upon arrival, immigrant bodies continue to be considered as less “abled” and less “human” reinforcing the ideology of “perfect” functioning and assimilation into societal Eurocentric norms (Dolmage, 2018). To fully understand the disabling and racializing force of anti-immigration rhetoric and its violent reproduction in schools via suspensions and bullying (Annamma et al., 2018; Losen & Skiba, 2010), the process of labeling ELLs as disabled must be challenged.
The family–school landscape reveals that rather than accepting interpretations of disability implicit in dominant discourses, DS can be used to critique labels given to students such as Autism (Alex), Learning Disabilities (Delia), Communication Impaired (Natalia) to understand that these are not absolute categories, but rather, ones that are culturally defined and that reflect a differential balance of power and privilege in society (Baglieri & Shapiro, 2017). This language of pathology influences school professional viewpoints because when difference is conceptualized as deficit, it produces a particular way of thinking about and responding to disabled children (Valle & Connor, 2019). Attention is needed to understand how these identities are constructed because Latinx families and dis/abled children are already experiencing these complexities, as consequences, within schools during special education processes (Lalvani & Bacon, 2019). In the next section, DisCrit is expanded to show Latinx mothers of dis/abled children resisting special education processes at the intersection of culture, language, and disability.
Mothers Enacting Agency to Reveal Critical Raced-Gendered Epistemologies
This article highlights the voices and knowledge of Latinx mothers of dis/abled children as a way to uphold their ways of knowing and emerging identities at the intersection of race, gender, class, (their child’s) disability, and culture. Our pláticas (cultural exchanges) revealed critical raced-gendered epistemologies that allows the experiential knowledge of Latinx mothers of dis/abled children to be viewed as a strength. It permits a different interpretation of family–school encounters when mothers are positioned as creators of knowledge. From this position, Latinx mothers show the value they place on cultural values of familismo: convivencia (spending time with others), confianza (mutual respect), comunicacion and consejos (communication and nurturing advice) to construct meanings of disability and family–school collaboration (Maldonado & DiBello, 2012). This is important because researchers must recognize that conceptualizations of disability not only represent families to others, but it can also define families to themselves. Latinx mothers of dis/abled children show capacity for self-direction, which reveals both their domination by social relations of power and their possibilities for liberation from those forces (Holland et al., 1998). This means that Latinx mothers of dis/abled children enact agency by considering their options and pursuing purposeful ends when faced with conditions and constraints out of their control. They resist school spaces that position families by legitimizing some acts but not others, by assigning different values and functions to families’ cultural and linguistic repertoires, and by constraining some families’ options differently in those spaces (Fecho & Clifton, 2017).
The privileging of family voice during family–school encounters represents a paradigmatic shift by positioning Latinx mothers’ knowledge, values, beliefs, and experiences as the foundation of every family–school interaction (Ferguson & Nusbaum, 2012). Their counter perspectives emerge as Latinx mothers of dis/abled children enact agency in the home and in school to define disability, set against professionals’ jargon used to describe their children as having (ab)normal mind and body reified by special education processes (Valle & Connor, 2019). Researchers highlight voices as essential parts of the knowledge base about the meanings of disability across cultures and classes, categories, and contexts to undo ableism (Baglieri & Lalvani, 2019). In this regard, Latinx mothers of dis/abled children make agentive moves as a way to talk back to the special education system while amplifying their strengths and values grounded in the Latin values of familismo (Valdés, 1996). Research shows that Latinx families experience a sense of responsibility to prepare their children for a better life (Garcia & Mireles-Rios, 2020) and ultimately, Latinx families play a crucial role in their children’s cultural knowledge as a way to prepare them for future opportunities (Acevedo-Gil, 2017).
In the next section, I reveal the epistemic narratives of Latinx mothers of dis/abled children an asset-based approach to uncover individual stories to refute the barriers they experience during family–school encounters. This way of knowing to uncover cultural identity and knowledge tells us that we can focus, not just on what Latinx mothers of dis/abled children do, but also on how and why they participate in their children’s education and how that engagement relates to their history and experience in and outside of the school. As collaborators, our pláticas, as rich cultural exchanges, uncover the following themes and definitions: ability (as competence), linguistic diversity (as an asset), and culture (as values) constructed by Latinx mothers of dis/abled children and offered as a path to equitable family–school collaboration.
Mothers’ Meaning of Ability As Competence
Latinx mothers of dis/abled children talked about learning as occurring both in school and in the home. They described their family engagement as embedded within the cultural values of familismo to support their goal of preparing their child for the future. In this regard, all mothers spoke about their child as competent and as having access to future opportunities and a better life than they had. Believing in Alec’s capacity to learn, Meri described,
Alec has always exceeded the goal; he is intelligent. I want to see Alec as accomplished, have a girlfriend, have a child, be a professional. I want him to develop in front of the world, as a normal child. For me, my son is normal, although for others they only see Autism, the word normal hurts.
In Meri’s reference to wanting her child to be seen as normal in the eyes of the world, I recognized that for her, a disability category (e.g., Autism) is not real on its own; rather, it is what people make of it (Annamma et al., 2013). Abilities are constructed based on institutional practices guided by ableist perspectives, which compare all children to the ideal of a learner who fits within a bell-curve shape (Valle et al., 2011). Meri and Carlo believed that anything is possible and described that Alec would grow to achieve what he desires in the future; highlighting his strengths and the ways he is like other children his age. Meri and Carlo voiced their goal of ongoing comunicacion (communication) with professionals to support Alec’s social/emotional and academic development. This communication also served as the way by which confianza (trust) was developed and nurtured between the family and school professionals. I learned that Meri maintained ongoing communication to develop a trusting relationship with school professionals to share information about Alec’s sleep, nutrition, and affective development. In turn, Meri also wanted to know how Alec was attending, learning, and socializing with others in school. I had a strong sense that Meri had learned to live a story of attending to Alec’s development as a student, but, more importantly, as a person. Meri’s experience is recognized by researchers that offer a “body becoming theory to speak back to biomedical diagnostic criteria that describe atypical movement and communication as autistic deficit” and instead highlight new possibilities for being/becoming autistic (Douglas et al., 2021, 618).
Tresa described her daughter, Delia, as competent and biracial. Delia loved to read and learned to speak the Korean language, compete on the track team, play the tuba, and was preparing to attend college. Tresa interrogated special education processes that labeled Delia as disabled and required her to attend a separate special education class. DisCrit theories help us understand how race and disability have been used in tandem to marginalize particular groups when “normative cultural standards such as whiteness and ability lead to viewing differences among certain individuals as deficits” (Annamma et al., 2013, 12). To describe Delia’s experience at school, Tresa let me know: “Delia feels her self-contained class is separate, she feels segregated, and feels bad when her friends see her in a small class”. Tresa believed Delia was experiencing her race and disability as marginalizing. Tresa described that she talked to Delia each day and used consejos (nurturing advice) to help her understand the value of graduating from high school. Also, she called on extended family members to encourage her to think about her future as related to her strengths. Researchers argue that how students think of their “intelligence, potential and academic learning is a product of social relationships that are constantly in motion” (Baines, 2014, 68). Therefore, thinking of the future, Tresa worried that being biracial and in special education classes would tell Delia what she is able or not able to do, thus limiting her opportunities. I learned that this experience was tied to earlier times in Tresa’s life; described as experiences of “racism and the discrimination in Oklahoma”. In relation to the COVID-19 pandemic and the Black Lives Matter protests, Tresa emphasized: “I tell Delia, pray for your sister in the military, the cops and the Blacks fighting for their lives”. Tresa described these priorities as grounded in her cultural values of familismo to argue that her daughter needs to learn more than what is taught in her self-contained classes, particularly about her ethnicity and race in relation to politics and the world.
According to Lina, her daughter Natalia did not have a disability. As early as preschool, Lina knew Natalia was able to learn and described Natalia as making steady progress in acquiring academic skills in the English language. She described Natalia as capable, having earned good grades, participating on the swim team, attending the culinary arts program, and getting accepted to a college. However, when school professionals required Natalia to enroll in a program where instruction was provided in Spanish only, Lina believed Natalia was being separated from others given her race and ability. Lina believed Natalia’s ability to speak and learn two languages (Spanish/English) was evidence of Natalia’s intellectual abilities. Overwhelmed by special education processes that followed, Lina said, “Natalia was labeled as learning disabled and this decision was made by school professionals”. Lina’s words remind us that in schools, race and perceived ability continue to be linked, and a disproportionate number of students from non-dominant racial and ethnic origins continue to be referred, labeled, and placed in special education classes (Annamma et al., 2013). As a monolingual Spanish speaker, Lina consistently requested translators in order to participate in all school and special education meetings. Lina disclosed, “Although we fought hard for help, the truth is, there wasn’t much help, the social worker that was supposed to help, the teachers and the principal, all of them did nothing to help Natalia”. She shared that the confianza (trusting relationship) that she had developed with a particular professional was broken. Lina shared, “I did not trust her because she worked with me in the past, but she did not speak Spanish at the IEP meeting or help me argue for the services that Natalia needed”. Lina’s story reveals a school’s fixed construction of race, ability, and language to substantiate their response to difference from the norm. In tears, Lina shared that she agreed to be interviewed because she wanted to expose the school’s practices of working with Latin families of disabled children. Lina shared; “Natalia says it’s our fault that she was placed in special education”. She wondered how she could have fought harder for Natalia. Lina’s feelings of failure as a parent were reflective of the ways in which systemic deficit framing often leads the family to internalize these ideologies and fault themselves for their own oppression (Urrieta, 2010). Ultimately, Lina believed these family–school interactions had a profound significance in their lives because once Natalia was labeled as disabled, it continued to justify the segregation of her daughter when compared to her peers.
In this section, epistemic narratives revealed Latinx mothers’ way of knowing their child as having capabilities that will prepare them for their future endeavors. They experienced their collaboration with school professionals as moments of tension, particularly as confianza (trust) and comunicacion (communication) did not seem to be equally valued by school professionals. Latinx mothers of dis/abled children embraced disability as a positive difference and a part of natural variance of life; to be accepted and not cured (Baglieri & Lalvani, 2019). To expand DisCrit theory, Latinx mothers knew their children’s experiences at the intersection of their race and culture meant their children’s disability was a resource and not an obstacle (Annamma et al., 2020). These findings are aligned with Harry (2020) who turns an analytical gaze to question what competence means across the range of human capabilities and who possesses rights. This researcher draws attention to Indigenous knowledge from the Caribbean islands of Trinidad and Tobago to capture the historical, cultural, and personal journeys of families of children with disabilities.
Mothers Enacting Agency Around Language and Culture
An analysis of the experiences of Latinx mothers of dis/abled children showed how they constructed the meaning of disability at the intersection of language, immigration and culture. It is important to recognize what it means to be an immigrant parent of a disabled child in a new country. Two Latinx mothers identified as having Indigenous origins, an undocumented status, and being multilingual. Their immigration status exposed a power differential; experienced as struggling to communicate with school professionals and accessing knowledge as needed to advocate for preferred school programs. They experienced linguistic and ethnic powerlessness because their dominant language was Spanish. Nonetheless, drawing on their cultural values of familismo, these Latinx mothers defined linguistic diversity as a strength in the way it led to confianza (trust) and comunicacion (communication) between Latinx families and some professionals. For these reasons, Latinx mothers consistently requested a translator and a cultural broker (Mortier et al., 2020) to bridge family–school interactions.
Meri expected that professionals would translate the information presented by teachers, therapists, and other school professionals. However, she shared, “I had to ask my husband what are they saying, and I lost much when they translated quickly”. At the IEP meeting, Meri valued information from teachers and therapists in order to support and enhance Alec’s learning at home. Thus, when all assignments were provided in English only, Meri shared, “I am helping him develop his math facts and handwriting skills, and his father, who speaks English, helps him with the reading and writing assignments”. Drawing on DisCrit and Raciolinguistics, researcher Cioè-Peña (2020) argues that Latinx mothers’ roles are often diminished because they lack the English proficiency needed to navigate English-only spaces and to support their children’s learning at home. Meri also disclosed that none of the therapists working with Alec spoke Spanish, and so she relied on translators to tell her about the skills they are working on. Meri’s words represent school decisions regarding the language for instruction that are often made by school professionals with little input from the family and often results in a monolingual placement. This procedure not only “impacts the linguistic practices of students in school but also at home, often leading to a decline in home language use for the child” (Cioè-Peña, 2020, 1). For Meri, English-only assignments meant she had a limited opportunity to support Alec’s academic development. Most troubling was that Meri’s limited English proficiency was positioned as a problem instead of multilingualism as an asset. Amidst these barriers, Meri and Carlo drew on their cultural values of familismo to develop a relationship built on confianza (trust) with Jennifer, a cultural broker, to assist them in navigating the special education processes. Cultural brokering means individuals work together to make plans that are shaped by intersecting structural forces; race, ethnicity, immigration, gender, and poverty (Mortier et al., 2020). These school liaisons reflect a conceptualization of family–school collaboration that explicitly acknowledges the expertise of families with the purpose of making decisions that will directly benefit students and their families.
Lina described, “When Natalia was in Kindergarten, she spoke well in English and understood everything well and even her teacher said she was learning well”. Lina understood that Natalia had developed proficiency in English as expected. However, Lina shared that school professionals used language screening results to place Natalia in a school where instruction was provided in Spanish only, without her consent. Lina regarded school professionals as misleading and excluding her from decisions regarding program placements linked to language proficiency. She explained, “My husband and I met with the principal many times, but he would not change her placement saying the language tests showed she was not ready and must receive her instruction in Spanish”. Over time, Lina argued for a monolingual English placement as she believed it could lead to positive outcomes in school and in the future. Unfortunately, when Lina connected English only as the path to Natalia’s success, it told Lina that her home language, Spanish, was of less value. School curricular practices that categorize each child as having a singular dominant language and conceptualizing language that creates English–Spanish binaries, fails to recognize the ways children are drawing on their entire linguistic repertoires instead of abiding by sociopolitical boundaries of named languages such as English or Spanish (Ghiso, 2016). To upend linguistic hegemony, translanguaging offers an approach to language that affirms and leverages students’ diverse and dynamic language practices in teaching and in learning (Vogel & García, 2017). In this article, DisCrit theory is expanded to reveal interactions around cultural values and language as instances of ethnic tension and hierarchies of power during family–school encounters (Annamma et al., 2013).
Taken together, as Latinx mothers of dis/abled children navigate special education processes at the intersection of culture, language, and immigration, it is important to attend to how these family–school interactions tell mothers what is possible for their children. While school professionals view disability labels as guides to educational planning, Latinx families of dis/abled children viewed these labels as problematic (Lalvani, 2015). Thus, Latinx mothers of dis/abled children developed ways of knowing when faced with school practices and processes that expose tensions around language and preferred program placement. Families expressed a desire to be more involved while feeling ill-informed and lacking support from schools. Further Meri and Lina’s lived experiences as immigrant families of dis/abled children provide an understanding of what it means to be an immigrant parent of a dis/abled child in a new country. Critical disability studies and migration research can help us understand the mutual processes of exclusion and marginalization when immigrants experience language barriers in schools (Egilson et al., 2020).
Latinx Mothers Define Family Engagement as Tied to Communication
The participants described engaging with their children in a variety of ways, both at home and as related to school. Their family engagement processes and practices were not discrete strategies that correlated to school activities or motivated by school-driven expectations. Instead, family engagement practices were directly tied to comunicacion (communication) efforts that supported the families’ goals for their children’s academic and social-emotional development. Consequently, Latinx mothers of dis/abled children emphasized the value of ongoing communication, rooted in their cultural values of familismo, as essential in connecting their child to family, community members and school professionals.
Communication as consejos (nurturing advice) was the way in which Latinx mothers developed a trusting relationship with their children in order to connect their child to family. At home, to connect their child to family, Meri talked to Alec to help him understand his emotions and adapt to changes in home/school environments by continuously talking with Alec during activities such as cooking, shopping, and visiting family. Meri explained, “I know how to teach and motivate him, we are talking all the time, about everything, his lessons and his feelings. When he feels anxiety, he tells me, and we do exercises and activities to help him understand his emotions”. Similarly, Tresa talked with Delia about choosing friends and drawing on the advice of family members who encouraged her to finish high school. Also, recognizing Delia’s experience as a biracial child, labeled as disabled, and expected to take medication at school, Tresa talked about the medication prescribed for her inattention during classroom instruction. In response to Delia’s words, “I don’t want to be on the pills no more”, Tresa said to her, “I will always talk to you, just tell me, and we will get you off the medication. I know you only need it in school to keep your focus”. Comparably, Lina prioritized her talks with Natalia to address the challenges Natalia was experiencing at school because she was resisting special education services. Lina shared that she talked with Natalia about applying for college and how these special education services would help her prepare for college. At the same time, Lina talked to Natalia about the importance of maintaining a relationship with her sister with significant disabilities.
Communication also served as the way by which confianza (trust) was developed to connect their child to community members. Latinx mothers came alongside their child to meet with community members: psychiatrist, pediatrician, home therapist, instructional aide, sports coach, private counselor, and church friends. During these mother–child–community interactions, Latinx mothers listened and valued community knowledge. For Meri, “Alec’s aide is also our family friend, we have dinner together and she brings presents to both of our children”. Meri’s relationship with the home therapist and instructional aide was valued because these community members conveyed perspectives, insights, and similar cultural beliefs about Alec’s future from working closely with him. Similarly, Tresa and her daughter, Delia described comunicacion (communication) with community members who came to know them personally, such as the sports coach, pediatrician, and psychiatrist. Tresa described “Delia’s coach listens to her like a mother would, also, her pediatrician always talks to us, like friends, not rushing us”. Comparably, Lina and Natalia developed trusting relationships with Natalia’s private counselor and families from their neighborhood church. Jointly, these stories show Latinx families drawing on their cultural values of familismo to cultivate trust with others akin to family members who can make decisions regarding what is best for their child.
Ultimately, communication also served as a platform for their child to develop advocacy skills. To connect their child to school, all Latinx mothers taught their child to maintain ongoing communication with school professionals. For instance, Meri prepared Alec to communicate with his teachers and therapists and quoted Alec’s words, “Ms. Jessica, I love her so much, she helps me at school and at home”. Similarly, Tresa guided Delia in fostering communication with school professionals to advocate for herself and gain access to particular classes. Tresa shared,
Delia is shy, she has to learn people skills to communicate with others, especially during her IEP meetings. I make sure she goes because she wants to take the Psychology class, but they say it’s not offered to students in special education.
Lastly, Lina let me know that together with Natalia, they were attending meetings with the Division of Vocational Rehabilitation (DVR); and “Natalia practices talking to professionals because their help is provided until age 21; for transportation or money for college or job counseling”.
Building on their cultural values of familismo, Latinx mothers’ epistemic narratives define family engagement as fostering trusting relationships with their child, community members and school professionals, from home and at school. Although these Latinx mothers of dis/abled children were not able to complete high school themselves, they all shared their view of learning at home and at school as ways to prepare their child for life and future opportunities.
Discussion
This article (re)framed family–school relations beyond traditional discourses of parent involvement that position Latinx families of dis/abled children as uninvolved in their child’s education. DisCrit theory was expanded to analyze how cultural identity is shaped for Latinx mothers of dis/abled children, and at the same time, how a cultural identity can challenge socially constructed narratives (Annamma et al., 2022). In doing so, this article examined mothers’ navigations of culture, language, and disability to show a counter-story set against school discourses and practices based on deficit paradigms within US schools. Holding firm to their cultural identity rooted in familismo, Latinx mothers of dis/abled children show how family–school relations can be defined as family engagement, to represent their commitment to communication as an integral part of special education processes. Regardless of being positioned opposite school professionals’ goals and priorities in special education, Latinx mothers produced meanings of ability (as competence), linguistic diversity (as strength), and culture (as an asset) with their child and with community and school professionals within the cultural contexts of home and school. By initiating and sustaining comunicacion (communication) with school professionals, Latinx mothers of dis/abled children came to define themselves as advocates during family–school interactions. Expanding DisCrit theory, Latinx mothers’ agentive moves are recognized as critical raced-gendered epistemologies that represent their strength and resistance at the intersection of ableism, linguicism, and racism. Latinx mothers of dis/abled children emerged as knowledge experts, fostering their cultural values of familismo as pedagogies of the home (Delgado Bernal, 2002). For this reason, this article has significance as it presents Latinx mothers of dis/abled children as engaged in the continuous work of (re)defining parent involvement as family engagement that is grounded in comunicacion (communication).
Implications for Teacher Education
All Latinx mothers identified their children as bilingual (Spanish–English). Research shows consequences for emergent bilinguals with a dis/ability include being placed in more restrictive environments than their white peers with a dis/ability (Losen & Orfield, 2002), receiving limited language support (Artiles et al., 2011), or having fewer opportunities to learn bilingually (Martínez-Álvarez, 2020). When working with emergent bilinguals, many of whom may come from low-income backgrounds and immigrant family origins, it is essential to explore their funds of knowledge, or existing cultural and linguistic assets, and integrate these resources into instruction (González, 2006). Teachers need to develop expertise in the complex set of knowledge, skills, and orientations needed to teach culturally and linguistically diverse (CLD) students. Learning to be linguistically responsive should begin during their preservice preparation and continue throughout their teaching career (Lucas & Villegas, 2013). To address educational inequities and improve the learning experience of bilingual dis/abled students, there is a need to continue to explore ways in which both bilingualism and biculturalism, as well as dis/abilities, can be conceptualized as the assets they can be for learning (Martínez-Álvarez, 2020).
This tells us that teacher educators can play a decisive role by designing courses that expose teachers to critical frameworks (e.g., DisCrit) to understand how systemic inequities are experienced at the intersection of culture, language, and disability. Coursework that uses narratives and biographies can help teachers contextualize their own beliefs and attitudes toward individuals with disabilities and understand how these impact their work as teachers. Teachers can come to recognize the importance of a dual analysis of race and ability within a system that seeks to categorize children as normal and disabled and how this disproportionately impacts those from culturally and linguistically diverse families who embrace other conceptualizations of disability (Annamma et al., 2013). This has significance because it calls educators to interrogate their own perspectives and practices asking “critical for whom” to question whose knowledge is valued in schools (Souto-Manning, 2013, 202). Emerging out of the US, Third World Feminisms in the 1960s to 1970s, Chicana feminist scholars (Delgado Bernal, 2002) have challenged invisibility in the household and in schools. In this article, critical raced-gendered epistemologies emerge to embrace difference and use an individual’s lived experience as a point of strength to resist. While traditional oral histories have often focused on Western and Eurocentric narratives in the United States, the narratives of Latinx families of dis/abled children in relation to schools have not been the foci. Suppressing Indigenous knowledges results in the nonrecognition of cultural, gendered, familial, and raced knowledges that can foster community (Harry, 2020). In this regard, Latinx mothers’ epistemic narratives provide a history from the margins that sheds light on the multiple realities and voices of Latinx mothers of dis/abled children making agentive moves as collaborators and advocates. These understandings can allow teachers to acknowledge ways of knowing more self-consciously that are not counted within normative understandings within schools. This tells us that both multilingual families of dis/abled children and educators’ identities can emerge as an iterative process; each coming to “understand oneself as emerging, intersecting, unfolding, across contexts over time” (Fecho & Clifton, 2017, 94). I propose that by positioning mothers’ critical raced-gendered epistemologies alongside, and equal to professional knowledge, this article calls teachers to embrace family engagement in the way that it sustains Latinx cultural values. This process of understanding can lead to adopting new meanings of disability as competence, linguistic diversity as a strength, and recognition of culture as foundational for family–school partnerships. In doing so, this article can serve as a catalyst for a disability justice approach to highlight Latinx mothers of dis/abled children’s agency and advocacy as valued raced-gendered assets-based knowledge.